1. Check it out :
What makes a good web design course ? How do you judge ? Check out the accreditation . is there a money back approval ? Is there a personal tutor service ? Does the course offer a thorough grounding in HTML and CSS ?
I have just finished and passed my final assignment , Assignment 10 , see- "www.stonebird.co.uk". Webstart has given me the tools I need to bring together so many aspects of caring full-time for my wife who has very severe ME and use them as a powerful campaigning tool.
Not only am I intensely proud of my new skills, I now qualify for a NCFE Level 3 award in Web Design from UK Open Learning : a Diploma in Web Design.
As someone who has an MA, a Nursing qualification and Post graduate qualifications in Education and Training and Development, I had no idea of how rigorous this course would be. Perhaps I even thought it a bit below me, an easy ride. Wrong. Webstart reminds me very much of my nursing training , the exact same emphasis upon professionalism and good practice. In terms of challenging myself, it's right up there with the MA, not in academic content perhaps, but in sheer hard work. I am still reeling.
You will not get the Diploma without putting yourself on the line.
2. Apply :
Make a commitment. Take the step. Apply. Do it.
There was perhaps a certain naivety about my application.
I had no idea what I was letting myself in for . Don't be misled by promises of 10 easy lessons ! Yes, they ARE easy , once you've done them. But the simplest things like basic page structure, not getting your HEAD and BODY tags all mixed up, while easy to read about and understand took some ingraining, I found.
Some say you don't need to do a Course to learn HTML, well they are right, it is not that complicated - in theory. But in practice, I doubt I would be anywhere near the level of professional competence that I am now, without the discipline and the rigors of this course behind me . There is just no way I would have challenged myself to same sky-high standards. I am proud to validate all my work, to code strictly in accordance with international standards.
3. Take the Risk
..of not being able to do it / understand it / complete it / being freaked out by it / becoming obsessed by it / exposing yourself to new ideas and challenges.
You will be challenged !
However tutor support is always on hand; I've emailed at all kinds of unsociable hours and often had a reply back almost immediately; you WILL find your way through !
Remember, the basics are easy enough, it's the putting them into practice : the unclosed tag, the missing quotation mark, the dreaded DIV's , that threaten your sanity (over and over again..)
How many times did I feel I had hit an absolute brick wall in my learning ?? There was no way I could make this page work....
Looking back, those were the breakthroughs in disguise that took me to the next level.
4. Knuckle down
..bite the bullet, take your medicine. It is hard !!! It is easy !! Either way get started on Assignment 1 .
5. Be prepared to face your inadequacies, weaknesses and vulnerability
Who would thought that a web design course would bring up such deep-rooted issues ?
How was your school experience ? Be prepared to relive it all, as you anxiously submit your assignments and receive your written feedback . I would rather not, thank you very much, receive (constructive) criticism of my work.
Sometimes I just felt so stupid, so annoyed with myself. It is not always that easy to pick yourself up of the floor and attend to all the issues that you have missed . To feel stuck forever on a particular Assignment because you have tried everything and you still can't make it work. Would I have been this disciplined on my own ? I tell you....
it's a lesson in humility !!!
6. Be willing to ask for help
I have discovered that I would rather do anything than ask for help. Those times I did, in desperation, I did with unruly hair and a wild look .....Yet the help is always there, always helpful, always kind. Eventually it all falls into place, eventually HTML becomes second nature . Give me nothing more than a basic text editor my friend and I will knock you up a fully functional web page in five minutes. Some learning, though, some awful moments along the way has gone into being able to do that !!
Accept the help that is on offer.
7. Be willing to research widely.
The Course material, comprehensive though it is, is probably not enough to get you through. It is test of your enthusiasm, excitement, I think, to read and research, as widely as you can. There is so much help online, but always, always, it was good to bring it all back to the safe confines of the Course to apply my learning to each assignment and learn good practice.
Be prepared to make quantum leaps in your ability; I was light years away from being able to create a site like Stonebird just nine months ago, when I started. However, in my experience, expect each leap to be hard-
won ! You might just get a bit battered and bruised along the way, especially your ego !
8. Be prepared to go backwards.
..in order to go forwards.
All was Spring-like, until I hit the Cascading Style Sheets (CSS) section .....talk about being turned upside down, upon my head. It was only the discipline of the early HTML sections, the knowledge that I CAN do this, that got got me back up , off the floor, where I lay confounded.
9. Be prepared to be perfect.
Nothing less is acceptable. The tutors are not tyrants; they understand we are beginners. However your HTML and CSS must be the best, must reach every standard of excellence. That is what is so good about Webstart , I believe. Good practice is drilled into you, from page one. My final feedback report remarked upon how I had observed "good practice" throughout Stonebird. That meant everything to me.
As a Nurse I observe the highest standards of professionalism, thanks to my tutors, long ago, and now it is the same as a fledgling web designer. I swear I will always validate everything I do to international standards.
This course will challenge you on deeper levels, especially your values, than you would ever have considered possible. Are you content with shoddy practice ?
Are you completely congruent ? You will find out.
10 Be prepared to grow as a person
Being a web designer, I have discovered, is fulfilling, enriching, stimulating, exciting, complex. It is definitely not a simple task.
Web Design brings up a lot of issues, not least is how to work with someone else - that is why the discipline of submitting regular assignments and dealing with feedback is such a useful one along the way. Web Design is a lot more complicated than it seems, on every possible level. I have so much yet to learn in terms of the creative process with a client.
I have learned, above all, that you have to be bold, at the end of the day. You won't do it, if you are not. Dare to be confident.
Be brave and enjoy it !
You would think after all those YouTube videos I would have so much to say. Except I don't. Nothing touches the grief, the loss, the pain. Words, I have discovered, do not come easy these days.
Emotions, though, are screaming for attention.
Comes a time, when words run out.
On a cold, bleak day, bleak with pain, with tedium - see Linda's poem yeterday, I came across Sir Michael Rawling's reply to Malcolm Hooper on CoCure. In this post I have tried to put what Rawling's said in context of the upcoming Guideline Review as well as NICE's intimidatory tactics, as demonstrated at the Judicial Review.
Letter to Sir Michael Rawlings (Chairman of NICE) 19 Feb 2010
Despite the vast amount of biomedical literature (some 5000 papers) going back to 1934 and the classification of ME as a neurological illness by the WHO (ICD-10 G93.3) since 1969, the official UK attitudes as demonstrated by the MRC, DWP, Department of Health, and to some extent your own organisation NICE:
a. ignore all this evidence
b. show an ideological commitment to a psychosomatic/behavioural model of the illness which is no longer tenable
c. recommend only cognitive restructuring techniques (CBT and GET) that are “not remotely curative” and have been shown to be of no lasting value and in the case of GET to be positively harmful (Peter White’s assertion that this is because the interventions have been incorrectly administered has been shown to lack credibility)
d. proscribe any investigative tests to identify the disorder, leading to missed diagnoses and misdiagnosis
e. support cruel, even vicious, actions that lead to patients being wrongly sectioned and parents, particularly mothers, accused of Munchausens’-Syndrome-by-Proxy, MSBP.
f. the result is that essential benefits and insurance payments to support patients and their families have not been paid or have been granted only after protracted and expensive legal action. All this adds to the burden of the illness for patients and for those who care for them.
The psychiatrists’ argument that what they refer to as “CFS/ME” is substantially different from past epidemics of ME does not withstand scrutiny in the light of current knowledge. It is beyond question that ME is associated with a severely disrupted immune system which renders patients more susceptible to both further viral and chemical challenge and reactivation of latent viruses and persistent viral-specific symptoms.
For the psychiatrists to amalgamate 25 different disorders (Holgate, RSM July 2009) and to focus on “medically unexplained fatigue” whilst ignoring cardinal symptoms of ME is a travesty of medical science."
....To rely on only a few studies, showing very modest efficacy, all of which having been shown to have very serious flaws (as is the case with the PACE Trial) and enshrine this inadequate information in official directions, publications and statements from authorised bodies, including NICE, is utterly unacceptable and dishonours the name of medicine as well as being destructive of lives of sick people and those who care for them.
Response from Sir Michael Rawlings 2nd March 2010:
You are obviously aware that NICE has, in the recent past, been involved in defending an action for Judicial Review over the ME/CFS guideline we published a couple of years ago. Although judge found in favour of the Institute the legal costs were considerable. I am afraid, therefore, that I am not prepared to enter into any correspondence on this matter.(http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm)
. Less than 48 hours before the case was to be heard, NICE ambushed the Claimants’ legal team with the threat of a significant wasted costs application. When the hearing began two days later, many observers both lay and legal, were puzzled by the lacklustre presentation of the Claimants’ Counsel, Mr. Jeremy Hyam. The commanding performance he had given at the preliminary (permission) hearing before Mr Justice Cranston was now conspicuously absent.
There was a reason for Jeremy Hyam’s change of demeanour. He and his instructing solicitor Jamie Beagent of Leigh Day & Co had just been threatened with a career-damaging subsidiary legal action by NICE. This threat was subsequently made good. In July 2009 Mr Justice Simon (the same Judge who dismissed the Claimants’ challenge) ordered Leigh Day & Co to pay NICE £50,000 in wasted costs, as compensation for improper conduct of the case..... NICE’s intimidatory tactics had the desired effect. Lacking the advantage of a pharmaceutical company’s deep pockets, the Claimants’ lawyers became thoroughly unnerved. In a seemingly desperate attempt to salvage their own position, they abandoned a substantial part of the Claimants’ case. They did this in mid-hearing, without their clients’ instructions or knowledge. The first clue the Claimants had of this development was when it was announced in court before lunch on the second day. It would be an understatement to say that their case was by then in some disarray. The failings of the Claimants’ lawyers are now the subject of a complaint by the Claimants to the Bar Council Standards Board and the Solicitors’ Regulatory Authority.
On behalf of Fraser & Short, Jeremy Hyam presented a limited argument (a) that the composition of the NICE Guideline Development Group (GDG) was biased, to produce a predetermined result, and (b) that the random controlled trial evidence base produced by the York Review was too weak to support the recommendations of CBT & GET.
From Magical Medicine (Feb 121 2010):
The intention to use the outcome of the PACE Trial to inform a revision of the NICE Guideline
Referring to a future revision of the NICE Guideline (CG53), the PACE Participants’ Newsletter Issue 3 of December 2008 robustly forecast that the outcome of the PACE Trial “will enrich the guidelines in 2009”. This is curious, given that the same Newsletter states on the same page: “We will be very busy analysing the main results of the trial in the spring of 2010”, so it is unclear by what transparent process the unpublished PACE Trial results will inform the forthcoming revision of CG53 that the PACE Participants’ Newsletter says is to take place one year before the PACE Trial results are to be published.
The pronouncement may, however, be taken to support the belief of the ME/CFS community that the outcome of the PACE Trial is – as was the outcome of the NICE Guideline on “CFS/ME” – a foregone conclusion.
For the avoidance of doubt, the PACE Participants’ Newsletter was incorrect. A Written Answer to a Parliamentary Question tabled by the Countess of Mar states: “The National Institute for Health and Clinical Excellence will consider in August 2010 whether there is a need to review its clinical guideline on Chronic fatigue syndrome / myalgic encephalomyelitis” (Hansard: Lords: 5th May 2009).
with severe ME
and even though
there are things to do
and endless possibilities
for the physically well
I cannot access them
Even if they are right before me
How can I convey
tedium of hours spent
constantly in pain
body throbbing endlessly
marking the seconds
as they flow away
utterly beyond me
and all my creative potential.
9th March 2010
5th March 2010
From the literature, here are 16 good reasons to be very suspicious of Action for ME (AfME).
The case against the National Institute for Health and Clinical Excellence (NICE) is generating considerable interest among the 250,000 people in the UK who have M.E., as some patients hope the legal proceedings will lead to the withdrawal of the guideline.
However, Action for M.E., the country's biggest M.E. charity, supports the guideline. "
National Charity Supports NICE: Judicial Review 11-12/02/09, UK
It is noteworthy that Action for ME, a charity that was set up by ME sufferer Sue Findley as a self help group for people with ME, has been so influential in supporting and working on a trial that assumes membership of a self help group to be a predictor of poor outcome of teeatment ( Trial identifier, section 2.3)and with a trial whose investigators believe AfME's members to be mentally ill.
AfME's membership might wish to consider why a charity that was formed to support people with ME should now work so closely in the PACE trial with those who chose to deny that ME exists, including attendees at the Malingering and Illness Deception Meeting in Woodtsock, near Oxford , on 6th-8th Novemebr 2001.
Malcolom Hooper Magical Medicine p.235 http://www.meactionuk.org.uk/magical-medicine.htm
It is not only Professor Pinching who is closely involved with Action for ME: Professor Michael Sharpe is (or was) an ad hoc Medical Advisor to the charity, and on 22nd January 2004 in a debate on ME/CFS in the House of Lords, the Health Minister, Lord Warner, confirmed that Professor Wessely had worked closely with Action for ME, to which the Countess of Mar responded: “Such is that man’s influence that when faced with ME patients, clinicians now collude with each other to ensure that patients receive no investigation, support, treatment, benefits or care – in fact, nothing at all. Patients are effectively abandoned. They have been badly let down by Action for ME. It is now supporting the Wessely ‘management’ programme and is, I see, to be actively involved in the development of the new treatment centres” (Hansard: Lords: 22nd January 2004:656:27:1180).
Malcolom Hooper Magical Medicine p.236 http://www.meactionuk.org.uk/magical-medicine.htm
Action for ME: the other main UK patients' charity, Action for ME (AfME), has had a chequered history. In September 1993 it changed its name and logo to "Action for ME and Chronic Fatigue". Complaints were made to the Charity Commission and the charity subsequently dropped "Chronic Fatigue". On 24th July 2003, in a statement approved by its Council of Management, the charity announced that it is funded by the Department of Health.
Psychiatrist Michael Sharpe (infamous for his "undeserving sick" comment quoted above) is one of its medical advisers, though his name does not appear on the charity literature. It is well-known that in UnumProvident's Chief Medical Officer's Report (Trends in Disability, December 2002) Sharpe wrote: "Functional symptoms are not going to go away. Privatised doctors will collude with the patient's views that they have a disabling and permanent disease. An increase in insurance claims is to be therefore anticipated. It will be imperative that social policy addresses this problem. This will not be easy. However, there are glimmers of progress. One of the major patient charities, Action for ME, is aligning itself with a more evidence-based approach. If this convergence of rehabilitation-orientated clinicians and a patient's advocacy group is successful, there could be very positive implications for insurers".
This liaison is encapsulated in the statement by Lord Turnberg (the former Sir Leslie Turnberg, President of The Royal College of Physicians): "The largest patients' charity, Action for ME, is working closely with Wessely and his colleagues on new research initiatives funded by the MRC and the NHS" (Hansard [Lords]: 22nd January 2004: Vol 656: No. 27:1186). It was under the auspices of Turnberg that the biased and highly flawed 1996 Joint Royal Colleges' Report CR54 on "CFS" was produced with his full support (see below).
Professor Anthony Pinching is currently AfME's Principal Medical Adviser. He is lead adviser on "CFS/ME" to the Department of Health and was responsible for allocating the £8.5 million grant from Government for the new "CFS" Centres that deliver only psychotherapy. His views on "CFS/ME" were set out in his article in Prescribers' Journal in 2000:40:2:99-106, published when he was Deputy Chair of the Chief Medical Officer's Working Group on "CFS/ME" ("CFS is not related to on-going exertion"; "the Oxford criteria are too narrow for clinical use"; "over-investigation can [cause patients] to seek abnormal test results to validate their illness"; "complementary therapists sometimes introduce or reinforce unhelpful illness beliefs"; "the essence of treatment is activity management and graded rehabilitation").
In March 2001 AfME produced an excellent report, Severely Neglected: M.E. in the UK. This report was the result of a membership survey of 2,338 respondents, making it the biggest survey ever done on ME in the UK. Its confidential Preliminary Report of 28th February 2001 stated: "graded exercise was reported to be the treatment that had made most people worse" but in the published version, this was changed to reporting that graded exercise made 50% of respondents worse. This makes it all the more surprising that AfME "is working closely with Wessely and his colleagues on research initiatives funded by the MRC and the NHS" when those "initiatives" are based on graded exercise.
AfME's report found that 77% of respondents experienced severe pain because of ME; nearly two out of three had received no advice from their GP on managing the illness; 70% were either never able, or were sometimes too unwell to attend a doctor's clinic; 80% of those who were bedridden by ME reported that a request for a home visit by a doctor had been refused, and that many people did not receive State benefits to which they were clearly entitled and desperately needed in order to survive.
By aligning itself with the Wessely School, who have a 20 year published track record of denigrating patients with ME, AfME has done patients with ME a massive disservice and may well have devalued the charity's own important report.
Michael Sharpe has a similar published track record to that of Wessely: he asserts that in "CFS/ME", personality factors have been shown to perpetuate disability; that no immunological, virological or nuclear imaging tests should be carried out on such patients; that "the label of CFS avoids the connotations of pseudo-diagnoses such as ME"; that "change in belief is an important factor in recovery"; that psychosocial factors are important in "CFS"; that his own view has long been "the issues around CFS/ME are the same as those surrounding (patients) who suffer conditions that are not dignified by the presence of what we call disease".
Psychiatrists Paid by Outside Interests
Extracts from “CORPORATE COLLUSION?” by Margaret Williams
If M.E. sufferers and their families do not wake up and confront the forces ranged against them now, the ‘conflict’ they will face at the 12 new (psychiatric) ‘M.E. treatment’ centres in the near future will be diabolical by comparison. The proverbial writing is well and truly upon the wall. The well-intentioned but wholly misplaced attempt to dialogue with and influence these corporate-backed psychiatrists has not only failed to secure progress, it has led to the extremely dangerous situation now at hand.
All this pussyfooting about has been tried for years by the ME Association and Action for ME and has been pointless and damaging to our cause. Members have said as much for years, but their ‘representatives’ have not been listening. It is the view of many that this has led to the corruption of these two organisations, both of which emphatically do not now represent the best interests of true M.E. sufferers.
The situation is analogous to that of Neville Chamberlain’s appeasement of the Nazis. Chamberlain wasted years trying to negotiate with Hitler when any cursory reading of Hitler’s copious words would render it obvious that conflict was unavoidable. Chamberlain’s time wasting was doubly foolish because it gave the Nazis time to gather strength and gain allies.
Some in the M.E. community may find such an analogy distasteful. In response I would direct them to just a cursory reading of the equally copious words of ‘Wessely-School’ psychiatrists (for example, Dr Michael Sharpe’s statement that: “Purchasers and Health Care providers… are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition [and who] are in this sense undeserving of treatment.” [Hooper – op cit. page 75.]).
I would also add this: what is really distasteful is that, as were the Nazis, Wessely-School psychiatrists are hell-bent on using pseudo-science to persecute physically ill people because they are a costly inconvenience. Such persecution is causing untold misery and has, in the opinion of many, contributed to the desperate suicide of physically ill M.E. sufferers. I for one am very angry about this scandalous situation and plan to do something about it. What are you going to do about it?
I would solemnly caution the M.E. community to beware of people attempting to persuade us not to confront and politic against corporate-backed psychiatrists. Carefully examine the motives, loyalties and sponsors of these foolish souls. History most definitively shows that human-rights and justice are never given; they have to be fought for against powerful vested interests.
The M.E. community are not the instigators of politicised conflict, the Wessely-School are. These people are not open to reason, they are the enemy of good science and they are the enemy of M.E. sufferers. Enough already, the time has come to sadly disassociate with MEA, AfME and other appeasers – they are part of the problem not the solution.
M.E. and Political Conflict http://twentysixsoldiersoflead.wordpress.com/category/action-for-m-e/
Unfortunately, while many advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in most cases. Very nearly all of these groups which started out determined to fight against the bogus 'CFS' propaganda and the abuse of science and ethics, are now actively SUPPORTING it. They have sold patients out to the highest bidder. Thus information provided by almost all so-called advocacy groups in this field should not be trusted or assumed in any way to be useful or accurate or in the best interests of patients. This particularly applies to information given by AfME and the MEA in the UK, the two largest CFIDS groups in the US, and each of the state 'CFS/ME' or 'ME/CFS' societies in Australia, for example. For more information see: Problems with 'our' M.E. (or 'CFS' 'CFIDS' or 'ME/CFS' etc.) advocacy groups, Problems with the so-called "Fair name" campaign, On the current (worrying) state of Australian 'CFS/ME' societies and M.E. advocacy and 'CFS' advocacy are not the same.)
Research which is funded by the NIH or CDC in the US or the MRC in the UK is virtually always irrelevant to M.E. The same applies to research involving Wessely, Sharpe, Cleare, Aylward, White, members of the Nijmegen group, Lloyd, Hickie, and their colleagues and collaborators. (See: Who benefits from 'CFS' and 'ME/CFS'?)
A warning on 'CFS,' 'ICD-CFS' and 'ME/CFS' research and advocacy, By Jodi Bassett and co-authored/ edited by Lesley Ben
Professor Malcolm Hooper Margaret Williams
Regrettably, there is now evidence that Wessely School views and aims have been adopted whole-heartedly by one of the major ME charities (Action for ME), and for many years there has been evidence that the other major ME charity (The ME Association) has also been compliant with certain of the Wessely School aims (specifically the view published in its magazine that ME might indeed be a psychiatric disorder – see below). This presents potential problems for the ME community as there is evidence that the influence of the Wessely School has permeated the All Party Parliamentary Group on ME (APPGME), for which these charities have succeeded in providing the secretariat and over which they have undisputed influence. Despite the inevitable denials, the evidence speaks for itself and has been collated by Paul Davis of RiME (Research into ME), who has also collated many moving case histories (see: http://www.erythos.com/RiME/ ).
Wessely’s role in all this cannot be denied: see “The Mental Health Movement: Persecution of Patients? A Consideration of the Role of Professor Simon Wessely and Other Members of The “Wessely School” in the Perception of Myalgic Encephalomyelitis (ME) in the UK”. M. Hooper et al, December 2003; online at http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm
ME: WHY NO ACCOUNTABILITY ? A synopsis for the UK Parliamentary Inquiry
Professor Malcolm Hooper Margaret Williams 18th August 2005
Eileen Marshall Margaret Williams
The recent campaign by Action for ME (AfME) to engage Members of Parliament in a candle-lit vigil to save the Government “CFS” Centres by securing more funding for those Centres would seem to be a case in point, given that the Centres support the psychiatric fallacy about the nature of ME/CFS by imposing compulsory and often inappropriate behavioural modification strategies such as cognitive behavioural therapy and graded exercise regimes, even though the evidence continues to mount that these Centres are causing actual harm to unknown numbers of those they are supposed to be supporting (see Research into ME [RiME] information on Co-Cure, 18th August 2006: “RiME latest – NHS Clinics Condemned – Part 4” and see also www.erythos.com/RiME ).
ME Exists: True or False?
Eileen Marshall Margaret Williams 18th August 2006
The Countess of Mar
Many of those who are severely affected feel let down by the apparent capitulation of the two major ME charities, which appear to accept the bio-psychosocial model of ME/CFS.
The Countess of Mar
House of Lords Debate, April 16, 2002
Critique of the Chief Medical Officer's Report
and Indictment of Simon Wessely
So, AfME then (1997) was thanking ME patients for challenging the work of Simon Wessely and Michael Sharpe - CR 54 contains 27 references to Wessely, 14 to Sharpe, many of them about GE/CBT and 'functional somatic syndrome'. Now AfME is working directly with Wessely and Sharp, promoting GE/CBT . . .
Action for ME - not long after the Judicial Review was over - announced a conference in April...
CFS/ME Clinical & Research Network & Collaborative (CCRNC) 2009 Conference
AYME and Action for ME in collaboration with the CCRNC
Milton Keynes 23rd - 24th April 2009
This is the second national conference for specialist services and health professionals working with people with Chronic Fatigue Syndrome/ME.
Thursday: Keynote Speaker Professor Mansel Aylward, Director of UNUM Centre for Psychosocial and Disability Research
..As you can see, the insurance company UNUM Provident is yet again at the heart of the agenda - the vehicle being driven by Action for ME linked nicely into the Pathways to Work scheme promoted by our UK Government.
Of course the Insurance Industry are laughing all the way to their offshore banks because there will be a greatly enhanced ability for any insurer to decline policy claims when a victim or a customer gets labelled as suffering from a functional mental illness that a bit of CBT will sort out – enough for them to return to work for a few months before those victims end up losing their jobs.
Why the CISSD Project MUST fail
28th February 2009
“Action for M.E., the country’s biggest M.E. charity, supports the guideline.”
Action for M.E. has around 9,000 members. Many of the estimated 250,000 ME sufferers in the UK lost confidence in Action for M.E. years ago and have terminated their memberships; this is reflected in falling membership figures. They have become disillusioned with the way in which Action for M.E. operates, with its lack of transparency and are critical of the charity’s relationship with government and with bodies such as NICE and the MRC. They do not believe that Action for M.E. properly represents their needs as sufferers of a disabling and debilitating illness.
Membership of this patient organisation carries with it no voting rights and therefore no ability to participate in trustee election processes; no ability to put oneself forward for election as a trustee through a ballot of the membership at an AGM, or to nominate others to stand for election in AGM elections; no rights to attend AGMs or EGMs held by Action for M.E. and no rights to make proposals at AGMs or to call for an EGM. Although Action for M.E. issues occasional invitations for expressions of interest from prospective trustees, via its magazine, trustees are selected by the existing trustees, not via a ballot of the membership through a democratic election process.
So although Action for M.E. claims on its website that “…our direction and policies are informed by the voices of people with M.E.” it is only those voices to which Action for M.E. chooses to listen, since the membership, itself, plays no part whatsoever in the selection of its trustees who “…guide, advise and support the Chief Executive to implement the charity’s strategy”.
When Action for M.E.’s members become disillusioned with the organisation’s policies, with its lack of transparency and with its general view of ME as a biopsychosocial condition as opposed to a physical neurological disease, as defined by the World Health Organisation and that it continually fails to represent their best interests, they are disenfranchised from influencing its governance, its policies and its direction because they have no vote. All they can do is vote with their feet.
Action for M.E. statement: High Court challenge against NICE is dismissed
I resigned my membership from AFME because they no longer represent the best interests of their members. They are ever increasingly joinging forces with those who support the theory that ME is a psycho-social disease and favour psychiatric treatments for it. This is unacceptable when there are over 4000 respected medical reports proving the physical existence of ME. There is also now proof that some 88 different genes are malfunctioning in people with ME and they deserve better. Because of these people they do not receive proper care or support. I deliberately left out the word treatment as the MRC steadfastly refuses to fund anything that could lead to treatment for ME sufferers and has confirmed under the freedom of information act that so far several million pounds has been spent on psychiatric treatment research. They say, AFME included, that there are no tests for ME. This is a lie. There is no simple blood test yet granted but there are a range of tests which conducted together can physically prove the existence of ME in a patient. These tests include Spect and PET scans, now ok these are expensive but compared to keeping people unwell and on benefit (once they have fought to get them) they are cheap. Not one person with ME wants to live the life they do yet they are mis represented and portrayed as skivvers who are simple 'tired.' The abuse is staggering - can you imagine what would happen if someone with cancer for example had to endure this and were told to 'talk' themselves better? Outrageous. And this is what AFME are aligning themselves to. For the record, they never gave me the decency of a response.
I just thought I should inform you officially that after a long
andhappy association with AYME I have decided to resign as their
Patron.Without going into too much detail I would say that over the
last couple of years I have become aware that they have changed their
position on several areas and that our views have accordingly diverged.
In particular AYME seem to have become more willing to collaborate with
the medical and psychiatric establishment in order to appear
respectable. This appears to have been the cause of AYME's relative
enthusiasm for the NICE Guidelines, which most of us feel involve an
overemphasis on CBT and GET. This compromise seems to have helped the
psychiatrists to get a new lease of life.
The result of all this is that AYME appear to have alienated
themselves from most of the other ME charities (with the exception of
AfME who appear to be taking a similar position). In this controversy I
feel more in sympathy with the rest of you. I have gained the
impression that AYME no longer appreciate my opinions and prefer my
status as their figurehead to be a largely silent one. It is a
combination of all these factors that has caused me to resign and I am
sure you will all understand.
With Best Wishes
Sadly AFME have failed sufferers for many years and displayed a lack of interest in engaging with sufferers about important issues.
This page exists so patients can have easy access to facts so they can make better informed choices about which organisations are representing them. People are free to choose who they support but I hope this page is useful to them. In fact I am very sad that this page needs to exist at all, it exists becuase AFME are just NOT representing sufferers views and have contributed to the mess we are in currently with CBT/Graded exercise clinics etc.
I am a patient who has suffererd with this terrible illness for the last 10 years and have been through the mill of the NHS clinics etc. Like many sufferers I want the situation in the UK to improve and I am sad to say I think AFME are stalling this goal, and I beleive many people would agree, there are good organisations though, so there is hope, I list some of these below. Sadly AFME are the most uneffective charity but also have seemingly the loudest voice, its just a shame often they have had the opportunity to create a positive change in the UK but instead they have opted to support the PACE trials etc and generally support the NICE guidelines which are widely damned by researchers.
25% ME Group resigns from Forward ME*
This is to inform the general ME community that the 25 % ME Group has withdrawn its membership from ‘Forward ME’.
Why, well we are no longer going to work with any organisation that supports the NICE Guidelines on ME/CFS, which primarily holds the belief that CBT AND GET will help people with this neurological disease. AfME and AYME have held firmly to their support of the NICE Guidelines and therefore the primary treatments that have caused so many problems for patients with ICD10 ME.
If any charity/organisation really looked ‘INTO’ the eyes of many people with severe ICD10 ME, then they would not have supported the NICE Guidelines or the very treatments that have also devastated many people with ME.
We, as a community of sufferers, truly need to decide who to support.
Check out the facts (updated)
Greg & Linda Crowhurst
4th March 2010
A UK debate is raging right now that has profound
implications for the whole ME Community. To what
extent should we accept the psychosocial model ,
because the biomedical model is not being
advocated for, developed or created by mainstream
This issue can only be tackled, we suggest, by taking
a step back and looking at the wider picture; the
concept of death-making is a particularly useful
framework from which to begin.
Death-making is concerned with society's potential to
bring death not life to those it does not value, This
includes the unwanted unborn, unwanted children,
people with a disability, the poor, prisoners, street
people, native populations, the elderly, the
contagious, the chronically ill, the terminally ill; any
group of people that is perceived as a threat or that
has been demonized.
Any practice, action or thought that considers a
person to be less than human, less than valid, less
than equal, is potentially a death-making one.
People or groups that society do not value often
suffer the "wounds" of being regarded as:
A menace / object of dread
A threat to the norm
Waste material, garbage, discard,
Not be taken seriously
An object of ridicule
An object of pity
A scrounger, malingerer,
hypochondriac, manipulator, user.
Childish, immature, irresponsible,
An economic / emotional burden
A waste of space.
(cf. Wolf Wolfensberger (1994). The Growing Threat
to the Lives of Handicapped People in the Context of
Modernistic Values, Disability & Society, 9(3),
A notorious example of death-making was the Nazi's
putting to death of sick and disabled people in
German killing centres , as an "act of mercy", the
lebensunwerten Leben; the "life unworthy of life".
“Their life is absolutely pointless..They are a
terrible, heavy burden upon their relatives and
society as a whole. Their death would not create
even the smallest gap--except perhaps in the
feelings of their mothers or loyal nurses." argued
Law Professor, Rudolf Binding and Professor of
Medicine, Alfred Hoche at the time, echoing
sentiments that date back as far as Plato and are
very prevalent today..
All of this took place against "a background of
pernicious nonsense masquerading as legitimate
scholarly research ..the unimaginable had occurred;
physicians were being encouraged, not to save life,
but to take it."
Shockingly the doctor-defendants who were involved
in this Nazi death programme never expressed any
regret at Nuremberg after the war, nor did they deny
their actions. They argued that they were following
lawful orders and that in the euthanasia program
they were motivated by the desire "to solve an old
This "bloody conclusion of Hegelian rational utility
and pragmatic morality" began with one fatal
assumption, wrote Dr Leo Alexander, a Boston
psychiatrist at Nuremberg :
It began with the acceptance of the attitude basic in
the euthanasia movement, that there is such a thing
as a life not worthy to be lived." (Powell J 1981
Abortion : the Silent Holocaust, Argos
Communications , Allen , Texas, p.34)
It is a concern that the UK psycho-corporate lobby's
stance could be considered as a death-making one,
when you look at the underlying messages and the
impact upon people with severe ME.
For example research by the 25% Group, for
the Gibson Inquiry, uncovered a shocking picture of
severely physically ill ME sufferers being labelled as
psychiatric patients, being treated with contempt by
many GP's, doctors and nurses, being locked in
secure units and shut in AIDS wards, being refused
food and being forced to participate in inappropriate
graded exercise and behavioural therapy, designed to
convince them there is nothing seriously wrong with
them. and that proper physical testing should not be
The psycho-corporate lobby continue to attempt to
subvert the international classification of this
disorder from neurological to behavioural; they have
infiltrated all the major institutions, they ignore and
misinterpret the biomedical evidence for ME (over
5000 research papers). and they continue to
suppress the published findings .
It is clear that the psycho-corporate lobby are
proceeding on the basis of a vague, put together sort
¬of- an- illness- that- people- may- or ¬may- not
have, rather than the strict Ramsay ¬defined truth of
neurological / enteroviral ME.
In “Magical Medicine”, Hooper (2010) argues that the policies of the psycho social lobby, the “immoral intervention of the insurance industry into the philosophy of physicians and health workers” (p.71) bears : “an alarming similarity to the National Socialist influence that spread across the Continent of Europe during the early 20th Century.
Nederlog chillingly summarises :
“GET = Graduated Exercise Therapy: This is based on the thesis that those who claim that they are too ill, too much in pain or too exhausted to work should be forced to work, or at least to work harder than they do already, hackled as they are by psychotherapeutical nurses and doctors and blackmailed as they are with loosing their health-benefits if they don't comply gladly and thankfully with CBT and GET.
This transparently benevolent and beneficent therapy, and its combination with CBT, is once again among the masterful contributions to the benefit of mankind of professor Wessely (and his able co-workers), and may be summarized quite adequately in German as "Arbeit Macht Frei…...”
Don't be misled by any organization who says they
represent people with ME. Check out the facts.
Do ask the following questions:
Are they calling it Myalgic Encephalomyelitis?
) Are they calling it ME/CFS?
Or are they leaning towards a psychiatric definition?
Are they calling it Myalgic Encephalopathy?
Are they calling it CFS/ME?
Are they calling it CF?
Are they calling it Functional Somatic Disorder?
Currently we have a situation where anyone with
fatigue is being given a CFS label, confusing the
whole issue of who has ME and who does not. The
psycho-corporate lobby says let' us make it a
syndrome rather than a disease, let us call it "CFS"
and then let us bury the ME "needle" in a whole sea
of undefined illnesses and limited symptoms; the
CFS "haystack". Let us bury the illness in a host of
confusion and vague illnesses and then say we know
how to 'treat' it using rehabilitation techniques. Let
us focus upon fatigue and those who might respond
to Graded Exercise therapy and Cognitive Behaviour
Therapy, even though those with true ME are saying
that these practices will harm them.
If you actually have neurological multi-system
enteroviral Ramsay-defined ME then you have to
develop awareness of the current state of ME politics
and treatment in order to stay safe. These are
dangerous times for the truly physically ill ME
sufferer, who is still being left to flounder often
without any medical support or back up, monitoring
or treatment., who may be given a wrong or
minimised prognosis, will not have all the symptoms
investigated appropriately and who will most likely
struggle to obtain benefits and appropriate GP
In order to survive, you need to be aware of the
whole list of your neurological / cognitive /
autonomic / neuroendocrine / immune system
malfunctions and then ask what symptoms are being
focussed upon by those who treat / represent you.
Are they acknowledging that you have a
Are they respecting your biomedical
Are they using the Canadian criteria?
Are they recognising that ME can be
deteriorative, severely disabling and can even
Are they advocating biomedical research?
Are they pushing for proper tests?
Are they using the Oxford criteria?
Are they excluding neurological symptoms
from their definition of ME?
Are they focussing only upon fatigue?
Are they proposing a biopsychosocial model
incorporating CBT/GET and a strict pacing
Are they suggesting that ME can be managed?
Are they pretending you are going to get better
even if you have been severely ill for more than
Are they denying you have a physical illness?
Are they advocating a psychiatric approach?
Are they entering a mental health label into
your medical notes?
Because the psycho/corporate lobby's truth is a
relative one (to a political agenda), it can be
infinitely flexible, so the goal posts can be
constantly moved about by the corporate-psychiatric
lobby and the real truth of ME perverted, especially
by the brilliant infiltration of patient movements.
Be aware of the message those who
represent you are conveying.
) Are they independently and proactively
standing up for the truth that ME is a physical ,
World Health Organization classified neurological
Are they fully consulting with their
Are they disseminating information that is up to
date on current worldwide physical research?
Are they implying overtly or covertly that ME is
wrong thought, wrong belief, hypochondria,
somatoform disorder, mental health issue?
Are they being influenced by any vested
interests or are they linked to any organization
or individual with vested interests in
maintaining a psychiatric paradigm for ME?
Are they attempting to undermine in any way
the WHO classification and terminology?
Are they recommending dialogue and
compromise with the psychiatric lobby, either
overtly or covertly?
Unless you understand that Myalgic
Encephalomyelitis is a neurological, multi-system
disease, which is severely disabling and can be
deteriorative, even to death, for which there is
currently no treatment and no cure and unless you
are aware of the eroding of this fact through the
clever use of language and compromising of facts,
then you are in grave danger of being misrepre-
sented by people and organizations that will not
truly represent your needs.
Does the truth of enteroviral, neurological ME fit
into the CFS paradigm? No, it does not !
If you have enteroviral, neurological, Ramsay-
defined ME, do you have deconditioning and
fatigue? Not likely !
Do you have only 6 symptoms? No, more like 60 !
Is the psychiatric paradigm going to help your
physical illness? No !
Is Graded Exercise Therapy going to help you feel
better physically and get fitter? No it is the worse
thing in the world for real ME !
Is a psychiatrist who does not believe you are
physically ill, going to get to the bottom of your
illness? We do not think so !
What benefit is a psychiatrist in the treatment of
ME? There are no treatments only rehabilitative
techniques masquerading as treatment.
Are psychiatrists spreading the truth that ME is
neurological with over 60 symptoms?
What is your personal experience of other medical
professionals, under the influence of the
psychiatric lobby? Have you been called a
malingerer, a hypochondriac, accused of putting it
on, been dismissed, told you only need
encouragement? Have you been refused home
visits, tests or treatments? It may not even be
If you have raging neurological symptoms you will
not want a psychiatric service as your front line
treatment option; that is for sure !
The message to all ME organizations /
associations/ representatives is stark:
1. You need to step back from the minutiae of
issues and see the bigger picture and look at the
wholeness of your values, principles and
intentions. What are they validating and standing
for? Is there any congruence with the truth of
ME? Are you acting with integrity or from a
2. Do not start from a false position and then sell
everyone short. You can convince yourself that
you are being "fair", or "pragmatic" but in reality
you are treading dangerously by denying the
silent reality of the thousands who are far too
disabled to stand up and speak out. Their reality
should not be compromised just because they
have been made invisible. Please do not make
them invalid as well.
3. Do not cloak the psychosocial issues in a cloud
of false, irrelevant arguments, such as : "He / she
is a nice person /Doctor / Nurse / OT"; "They
mean well."; "It is all that is available" Services
should not be about personalities or people. They
are about real issues, values, attitudes and
practices that either validate or deny the physical
reality of ME.
You cannot compromise on the truth of ME,
To do so, is to embark on a slippery slope
downwards towards relativism and away
from truth ; miles away from any hope of
proper research, treatment and a cure.
In short there are only two ways anyone
representing ME can go.
Life-bringing: straight-street, laser-sharp, from
the truth to the truth, with honesty and integrity
at the centre.
Death-making: slick, glossy, in an ever wider
circular cover-up of denial and manipulation; and
this begins the moment you compromise your
You simply cannot sit safely on the fence believing
that you are being reasonable. There is no balance
to be struck between psycho-corporatism and a true
biomedical approach. People are dying right now from
Martin Luther King, writing from his Birmingham
prison cell, in the midst of an equally impossible
struggle commented that "I have been gravely
disappointed with the white moderate.
I have almost reached the regrettable conclusion
that the Negro's great stumbling block in his stride
towards freedom is not the White Citizen's Councilor
or the Ku Klux Klanner, but the white moderate who
is more devoted to "order" than to justice, who
prefers a negative peace which is the absence of
tension to a positive peace which is the presence of
justice, who constantly says, "I agree with you in the
goal you seek but I cannot agree with your methods
of direct action"; who paternalistically believes he
can set the timetable for another man's freedom;
who lives by a mythical concept of time and who
constantly advises the Negro to wait for a more
Shallow understanding from people of good will is
more frustrating than absolute misunderstanding
from people of ill will. Lukewarm acceptance is more
bewildering than outright rejection."
(Why We can't Wait, Letter from a Birmingham Jail,
Harper & Row 1963)
The greatest threat to people with ME right now,
comes not just from the psycho-corporate lobby;
they are so easily exposed. It comes from the
moderates, the lukewarmers, the pragmatists,
the compromisers right at the centre; who cannot
see the damage they are doing by negotiating the
Why it is wrong to provide CBT and GET to ME Patients.
Greg Crowhurst 2nd March 2010
(With special thanks to Clara Valverde)
Permission to Repost
From the literature , here are 101 good reasons why services are
wrong to provide Cognitive Behaviour Therapy (CBT) and Graded
Exercise Therapy (GET) for ME patients :
CBT is based on the idea that somatoform disorders are maintained by
abnormal or unhelpful illness beliefs which lead to abnormal or
unhelpful behaviour. The first requirement for a somatoform diagnosis
is that there be no physical cause for the symptoms. This is not the
case in ME/CFS”
Dr William Weir
“Two forms of treatment…are CBT and GET CBT is a psychological
treatment. Its application in what is certainly an organic disorder
is basically irrational....
Its application is counter-intuitive, particularly when one of the
most debilitating and well recognised symptoms of ME/CFS is
post-exertional malaise which can put some patients in bed for days
after relatively trivial exertion”
Dr Irving Spurr
I consider that the recommendation of CBT and GET as blanket
treatments of ‘clinically excellent’ first choice is extremely
dangerous to patients.
Dr Eleanor Stein
A close read of the literature reveals that none of the core symptoms
of ME/CFS improve with CBT or GET.
Dr Byron Hyde
“(Graded exercise therapy) is not therapy – it is simply the
enforcement of an opinion rather than a treatment based upon any
scientific examination of a patient’s pathology and treatment of that
…..Graded exercise programmes may be significantly dangerous to many
of these ME patients”
Dr Derek Enlander
“(The GDG) produced a Guideline that recommends CBT and GET as the
prime treatment yet there is in fact published evidence of
contra-indication / potential harm with GET.
Dr Bruce Carruthers
It is when a therapy such as CBT begins to interfere with the natural
warning systems, of which both pain and fatigue are a part, that the
increased risks arise. In particular, musculo-skeletal pain and
fatigue have essential function in modulating activity when the body
is in a state of disease as in ME/CFS.
NICE, however, recommends over-riding this essential safety-net, thus
the risk of serious harm is increased in this situation of
simultaneous activity and symptoms denial. This will become a more
serious risk in patients with more severe ME/CFS.
Dr Neil Abbot
“There have been only five trials of CBT with a validity score greater
than 10, one of which was negative for the intervention; and only
three RCTs of GET with a validity score greater than 10. …..Until the
limitations of the evidence base for CBT are recognised, there is a
risk that psychological treatments in the NHS will be guided by
research that is not relevant to actual clinical practice and is less
robust than is claimed’.
Dr Charles Shepherd
“.In some cases people are now being given little more than a
‘therapist-led’ management assessment followed by an offer of CBT
Studies of GET do not ensure that the participants included suffer
from serious symptoms of ME/CFS such as post-exertional malaise and
mostly use loose, fatigue-based criteria, allowing mixed groups of
fatigued participants to be included. ... Recommendations for GET
ignore the risk of harm indicated by other research and the frequent
worsening of symptoms following exercise reported by people with
There is real concern that not only is CBT (Cognitive Behavioural
Therapy, the other “treatment” provided by the NHS) ineffective, but
that GET is potentially harmful to patients with ME/CFS. It is known
that GET may leave up to 82% of ME/CFS patients who have undertaken it
irreversibly house or bed-bound.
"Whilst no one would question that physical exercise improves quality
of life both in health and diseases in general, recommending graded
exercise as a specific prescription for complex disorders like
fibromyalgia and CFS is a gross oversimplication of science." - A
Chaudhuri "Missing data and compliance with oversimplification" -
letter to the British Medical Journal by A Chaudhuri, Clinical Senior
Lecturer in Neurology at the University of Glasgow, 1 August 2002,
commenting on the study "..Prescribed exercise in people with
fibromyalgia: parallel group randomised controlled trial...",
Richards SC, Scott DL., published in BMJ 2002 Jul 27;325(7357)
Canberra Fibromyalgia and CFS
Graded exercise therapy (GE or GET) - sometimes referred to as "graded
aerobic exercise" (GAE) - is often included as part of a cognitive
behavioural therapy (CBT) program. It is recommended by those who
follow the biopsychosocial model. The fundamental philosophy
underlying this kind of treatment is that deconditioning, depression
and believing one is ill are at the root of CFS.
Carruthers et al.
The question arises whether a formal CBT or GET program adds anything
to what is available in the ordinary medical setting. A well informed
physician empowers the patient by respecting their experiences,
counsels the patients in coping strategies, and helps them achieve
optimal exercise and activity levels within their limits in a common
sense, non-ideological manner, which is not tied to deadlines or other
Physicians must take as much care in prescribing appropriate exercise
as in prescribing medications to ME/CFS patients
This excerpt is taken from pages 46-49 of the article "Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case
Definition, Diagnostic and Treatment Protocols" which appeared in the
Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115,
written by Carruthers et al.
Frank N.M. Twisk and Michael Maes
ME/CFS is considered to be a rather harmless condition by most
physicians, but patients with ME/CFS are often more functionally
impaired than those suffering from type 2 diabetes, congestive heart
failure, multiple sclerosis, and end-stage renal disease
a) the evidence-based success claim for CBT/GET is unjust, since the
evidence base is lacking and CBT/GET is not significantly more
effective than usual care; and
b) the exertion, and thus GET, can have numerous potential damaging
physical effects on ME/CFS patients.
The (bio)psychosocial model (CBT/GET) has been invalidated by research
A review on cognitive behavorial therapy (CBT) and graded exercise
therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue
syndrome (CFS): CBT/GET is not only ineffective and not
evidence-based, but also potentially harmful for many patients with
Frank N.M. Twisk and Michael Maes
In 2006 Chalder and others claimed that “Cognitive behavioural therapy
and graded exercise therapy have been shown to be effective in
restoring the ability to work in those who are currently absent from
work.” In 2007 NICE demurred: “There is a lack of studies in this
area … More information is needed on functional outcomes such as
return to work or education.” (CG53 p 61)
Santhouse et al. describe CBT and GET as “treatments” for CFS/ME. As
defined by NICE they are much less than that. They are merely
techniques to help patients cope with an intractable and so far
untreatable condition. In the words of NICE: “The GDG did not regard
CBT or other behavioural therapies as curative or directed at the
underlying disease process, which remains unknown. Rather, such
interventions can help some patients cope with the condition"; (CG53 p
Horace Reid http://niceguidelines.
Not only did NICE ignore the fact that the recommended interventions
(CBT/GET) are not effective, it ignored the evidence that subsuming
all states of “chronic fatigue” into one functional somatic syndrome
is contra-indicated, as well as evidence that most of the randomised
controlled trials (RCTs) on CBT on which the GDG relied are seriously
In most of the ten trials of CBT upon which the GDG relied, the
methodology does not meet even the most minimally acceptable standards
The trials used give a total of 480 patients out of an alleged UK
total of 240,000 patients and is insufficient data upon which to
recommend a national strategy
Patients with pre-existing psychiatric co-morbidity were not excluded
from the studies relied upon
Nowhere is there any evidence that patients fully recovered
The behavioural model of “CFS/ME” offers relatively little; it is
supported only by researchers with a professional interest in
psychosocial aspects of illness. This model dominates the NICE
There is no credible evidence to support the GDG’s claim that the best
practice evidence-base is the nationwide implementation of CBT/GET for
patients with “CFS/ME”.
Background information and illustrations of evidence that CBT cannot
improve ME/CFS which NICE disregarded Margaret Williams25thJuly
ME Research UK
…. the management strategies making up the bulk of the ‘treatments’ on
offer by the National Health Service in the UK — “CBT and Graded
Exercise” — seem absurd to patients and carers given the problem on
ME/CFS Research: What do patients want? Why isn’t it happening?
A thorough analysis of the current medical scientific literature and
international patient surveys,..shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also
potentially very harmful.
Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many
patients with ME/CFS.
25% Severe ME Group
ME/CFS is not “cured” by Cognitive Behavioural Therapy (CBT) and
Graded Exercise (GET). CBT and GET are not accepted in the British
Formulary for ME and therefore cannot be considered automatically to
be within the legal framework for treatment, especially for the
severely affected (25% Group 2005) CBT and GET are potentially harmful
to anyone with neurological ME.
25% Group :25% ME Group Response to the DWP Guidance Document on CFS/ME
The UK definition of CBT is contained in the Chief Medical Officer's
Working Group Report of January 2002: "Cognitive behavioural therapy
is a tool for constructively modifying attitude and behaviour".
The UK definition of GET is contained in the NHS Plus National
Guideline on Occupational Aspects of CFS of October 2006: "GET
involves structured activity management that aims for a gradual
increase in aerobic activities".
According to Cheney, aerobic exercise may kill the patient with
(ME)CFS, so patients are rightly wary, because for almost 20 years
Wessely School psychiatrists have claimed that ME does not exist
except as an aberrant belief, and that "CFS" is a psychiatric disorder
in which patients refuse to confront their "faulty illness beliefs"
(ie. that they have a physical, not a mental, illness).
Margaret Williams : Kilmas, Wessely and NICE , Redefining CBT ? Invest
in ME ,http://www.investinme.org/
No evidence exists which shows that cognitive behavioural therapy
(CBT) or graded exercise therapy (GET) are appropriate, useful or safe
treatments for Myalgic Encephalomyelitis (M.E.) patients. Studies
involving miscellaneous psychiatric and non-psychiatric ‘fatigue’
sufferers, and their response to these treatments, have no more
relevance to M.E. sufferers than they do to diabetes patients, cancer
patients, patients with multiple sclerosis or any other illness.
Jodi Bassett The effects of CBT and GET on patients with M.E. -
Professor Malcolm Hooper
(CBT, GET) :
(i) is not remotely curative;
(ii)modest gains may be transient and even illusory;
(iii) these interventions are not the answer to ME/CFS;
(iv)patients have a tendency to relapse; and
(v)evidence from randomised trials bears no guarantee for treatment
For a detailed review of Wessely School indoctrination of State
agencies, and the impact of this on social and welfare policy, see
Evidence submitted by Professor Malcolm Hooper (NICE 07)
Norfolk and Suffolk ME/CFS Service Development
Latest scientific studies find GET and CBT ineffective and harmful
The two therapies which the NHS here in the UK remains committed to
(under the 2007 NICE guidelines) for the clinical treatment of ME/CFS
are Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy
(CBT). NICE recommends CBT/GET as the first line of intervention and
as key therapeutic strategies. Two recent scientific reviews of CBT
and GET by medical research departments in the UK and Europe have
condemned the use of both treatments in light of overwhelming evidence
of the biological abnormalities present in ME/CFS.
A collaborative review by Frank Twisk and Michael Maes from research
centres in the Netherlands and Belgium says: "... we invalidate the
(bio)psychosocial model for ME/CFS and demonstrate that the success
claim for CBT/GET to treat ME/CFS is unjust." They go on to conclude:
"it is unethical to treat patients with ME/CFS with ineffective,
non-evidence-based and potentially harmful “rehabilitation therapies”,
such as CBT/GET."
This evidence brings into question a High Court judgement from the
Judicial Review of the NICE Guidelines in March 2009 where the judge
dismissed allegations that current therapies are harmful to some with
myalgic encephalomyelitis. The latest scientific evidence clearly
supports the defendants, ME sufferers Kevin Short from Norwich, and
Douglas Fraser from London.
The study on Graded Exercise Therapy by Pierce and Pierce (UK/Italy)
concludes that "... it is difficult to conceive of a more
inappropriate therapy for ME".
Norfolk and Suffolk ME/CFS Service Development
Kinlon ( Do CBT and GET really work for Chronic Fatigue Syndrome?
)pointed out that : “Santhouse and colleagues (1) claim that
treatments such as cognitive behavioural therapy (CBT) and graded
exercise therapy (GET) “have been shown to work” in Chronic Fatigue
Syndrome (CFS)/Myalgic Encephalomyelitis (ME).i However, what the
literature actually shows is that such therapies have an effect, which
is not necessarily the same thing as “working”: a meta-analysis
calculated the average Cohen’s d effect size across various CBT and
GET studies to be 0.48, which would generally be described as a small
It is disingenuous to claim that the use of CBT and GET “in a group
of patients who cannot normally travel to hospital to access them, is
going to produce a 'dramatic recovery'. A considerable amount of
accumulating patient evidence indicates that a significant proportion
of people with ME/CFS find that the two behavioural treatments being
recommended - cognitive behaviour therapy (CBT) and graded exercise
therapy (GET) - are either ineffective (ie CBT) or harmful (ie GET).
And the only research so far to investigate potential risk factors
which are involved in the development of severe ME/CFS 4) has
concluded that there is no evidence to implicate personality or
Do CBT and GET really work for Chronic Fatigue
Northern Irish ME Association
Current NHS recommended treatments for ME are ineffective, and often
have serious side-effects. CBT and GET are unpopular with patients,
and face client resistance. GET has complication rates ranging from
37% - 50%, and should never have been approved for general use in the
NHS. The use of psychotherapy as a first-line treatment perpetuates
the myth that ME is a psychiatric illness.
Northern Irish ME Association http://www.nimea.org/
Kathelijne A Hugaerts
In Belgium, during 5 years, the Belgian Government subsidized 5 “CFS
Reference Centers” who treated patients solely with CBT/GET. They used
the Fukuda criteria for selection. Every year, 1.5 million Euro was
distributed to the 5 centers. This makes a total of 7.5 million Euro
during 5 years. 800 patients were treated during this period.
The Belgian Health Care Knowledge Centre (KCE) reviewed the result
after 5 years (2009)( The KCE is a semi-governmental institution which
produces analyses and studies in different research of health topics.
patients feeling better : 6 %
Patients feeling worse : 38 %
Patients with no result, not better nor worse : the remaining 56 %
The ultimate goal of the Reference Centers and their CBT/GET therapy
was not met: NOT ONE PATIENT RESUMED WORK.
This confirms that CBT/GET is ineffectively and possibly harmful.”
The Belgian experiment with CBT and GET
In the context of ME/CFS, cognitive–behavioural approaches are not
evidence-based to a level where they can be claimed to be specific
“treatments” – an unsurprising observation given that this “syndrome”
diagnosis delivers a heterogeneous population widely believed to
contain distinct clinical sub-groups (15). The systematic review
underpinning NICE Guideline 53 found 10 randomized clinical trials on
adults, 3 of these negative with the remainder showing mild to modest
positive, though non- curative, results. Recent overviews have
confirmed this; a recent Cochrane review (16) found 15 studies of CBT
(including controlled clinical trials) for ME/CFS and took a more
cautious view of the evidence and its limitations than the authors of
the BMJ Editorial, as did a second recent review (17). This latter
meta-analysis of 13 clinical trials (representing 1371 patients) found
a very mixed bag of studies and reported an overall effect size that
was small–moderate by usual standards. Not for nothing did NICE
Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it
did “not regard CBT or other behavioural therapies as curative or
directed at the underlying disease process”.
Not the Answer to the Biomedical Enigma
Theresa L Heath
“I undertook the course of CBT offered by King's College Hospital with
an open mind and a degree of optimism. I finished the course feeling
depressed and like a failure. I now view CBT as akin to other quack
'therapies' such as the Lightening Process. Your recovery is in your
hands. If you don't improve, you're a failure. My therapist seemed
genuinely confused when I did not make any improvement, and in fact
suffered my worst relapse to date whilst endeavouring, against my
better instincts, to adhere to their GET and sleep programme. I
completed the course doing less physical activity than when I had
started, and feeling guilty for my own 'unhelpful illness beliefs'.
CBT and GET taking up valuable funds
“The basis of CBT for ME/CFS is fantastic. First, you blame the
patient for his illness, and then when CBT doesn't cure him, you blame
him for not being motivated. When I'm fit and well again, I will use
this same principle when I see a patient with for example, a severe
infection. If the antibiotic I have prescribed, doesn't solve the
problem, then I will blame the patient. That the culture has shown
that I prescribed the wrong treatment, is something I will ignore. “
I Adore CBT http://www.bmj.com/cgi/
To use NICE as an example for promoting the use of CBT and GET is
risible and perverse, yet entirely predictable as biomedical research
was ignored.The fact that 90% percent of ME support groups opposed
NICE, the fact that ME patients took NICE to a judicial review in
protest at their guidelines for ME, the fact that the only support
that NICE could muster from those supposedly supporting the ME
community were from organisations that accept government money and who
themselves organise “psychosocial conferences” on ME – all of this
illustrates the lack of confidence which people with ME and their
families have for NICE. “
Education the Key to http://www.bmj.com/cgi/
...any recommendation of CBT is based on flawed research, and goes
against patient, and research, evidence:
….any recommendation of GET is based on flawed research, and goes
against patient, and research, evidence:
There are multiple research papers showing that people with ME react
adversely to exercise, and that increasing the cardiac rate, in
particular, is extremely dangerous.
...patient evidence has shown that the majority of patients find GET
unhelpful/harmful, with more than one patient survey showing over half
of patients undertaking GET are made worse.
BRAME: Personal Response from Tanya Harrison to NICE guideline on CFS/ME
What is omitted ….is a warning of the very real dangers of imposing
CBT and GET on very frail, vulnerable, ill people for whom exercise is
contra-indicated and who suffer such devastating levels of cognitive
dysfunction, as a result of their disease, that CBT becomes equally as
dangerous as physical exercise. Mental exertion can have an equally
disastrous impact upon the body , leading to an increase in already
severe symptoms and a deterioration that can be permanent and may lead
Patients with severe ME do not want CBT and GET. What they want is
biomedical research, significant biomedical testing and new tests and
treatments available on the NHS. What they need is the psychiatric
interpretation and powerful influence out of ME altogether. It is long
A Dangerous Path to take
Clara Valverde RN BSc and Dr Iñaki Markez MD, PhD
"CBT is being used in ME/CFS to forward governments' political and
The proponents of CBT are mistaken when they define the patient with ME/CFS as
someone whose way of thinking has to be changed. The sociological
literature shows that people who have his illness, more than those
with any other chronic illnesses , use, within their enormous
limitations, their meagre energy to help others who are in the same
situation as themselves.
Despite of being mostly housebound, these patients dedicate their few
able moments to support and encourage on, especially through internet,
other patients with ME/CFS, and to share useful information for their
self-care. They also work to try to improve the limited services
provided for this illness.
Not only is that a lesson in generosity for society, also all the
knowledge on how to live
with this new and difficult illness, which is on the increase, it is
a great richness for all
which this society cannot afford to waste".
ann Spurgin, Ph.D.
According to this thesis, some 2 million people across
the country, people whom the book (A Review of Mark Demitrack's and
Susan Abbey's Chronic Fatigue Syndrome: An Integrative Approach)
theorizes were often of above-average intelligence before they got
sick, developed a viral infection or some other bodily stressor and
then, suddenly, their interpretation became skewed. Suddenly they
began imagining that their symptoms continued beyond the acute,
infectious stage and that those symptoms were severe. Such
"attributions" and "cognitions" perpetuate the illness, as does the
"attributional bias" of the physicians who take them seriously. The
cure, according to the book, is Cognitive Behavioral Therapy, which
alters the faulty cognitions and leads to new behaviors such as
exercise. Exercise, according to the book, restores the patient to
normal. Elegant prose and cool, clinical language provide the book
with an aura of scientific objectivity. Careful examination, however,
book to contain more value-laden rhetoric than logic, more religion
Critical Analysis of the CBT/GET Model www.cfids-cab.org/MESA/
Drs. M.P. Koolhaas, H. de Boorder, Prof. dr. E. van Hoof
A recent pilot study (Koolhaas, et al., 2008, Netherlands) reports that only
2% of ME/CFS patients are cured by CBT, while the greatest share (38%) are
adversely affected - most reporting substantial deterioration. It is
especially notable that employment and education are negatively affected.
This is in sharp contrast to the claims of psychiatrists and the Dutch
Health Council that 70% of patients improve. Previous studies have also
ignored or denied the negative affects of CBT on ME/CFS patients. The pilot
study, recently published in the Dutch Medical Magazine, Medisch Contact,
concludes that the previously reported claims of 70% improvement in ME/CFS
patients receiving CBT are vastly overstated and misleading.
Drs. M.P. Koolhaas, H. de Boorder, prof. dr. E. van Hoof
Date: February 2008
ISBN: 978-90-812658-1-2 Cognitieve gedragstherapie bij het chronische
vanuit het perspectief van de patiënt
Frank N.M. Twisk and Michael Maes
"In this review we invalidate the (bio)psychosocial model for ME/CFS and dem-
onstrate that the success claim for CBT/GET to treat ME/CFS is unjust. CBT/
GET is not only hardly more effective than non-interventions or standard medical
care, but many patients report that the therapy had affected them adversely, the
majority of them even reporting substantial deterioration.
Moreover, this review shows that exertion and thus GET most likely have a nega-
tive impact on many ME/CFS patients."
Neuroendocrinol Lett 2009;30(3): 284–299 .A review on cognitive
behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic
encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is
not only ineffective and not evidence-based, but also potentially
harmful for many patients with ME/CFS. NEL300309R02 ©2009
Neuroendocrinology Letters • www.nel.edu
The supposedly sound evidence base for the effectiveness
of the psychological therapies may be far more
questionable than is widely supposed.
The trouble with psychotherapy CoCure Monday, February 25, 2008
Clinical Psychology Forum 162 - June 2006
Boudewijn Van Houdenhove and Patrick Luyten
In this issue of Patient Education and Counseling, two interesting
papers challenge current evidence-based treatments of chronic fatigue
syndrome (CFS). In the first study Goudsmit et al.  show that a
brief multi-component programme aimed at helping CFS patients cope
with their illness, may be as effective as cognitive behavior therapy
(CBT). In the second study Jason et al.  demonstrate that CFS
patients who carefully stayed within their 'energy envelope'
(measured by a self-monitoring strategy) did better than patients who
were less successful in keeping expended energy close to available
energy – a finding that challenges basic assumptions of graded
exercise therapy (GET)
1] Goudsmit EM, Ho-Yen Do, Dancey CP. Learning to cope with chronic
illness. Efficacy of a multi-component treatment for people with
chronic fatigue syndrome. Patient Educ. Couns. 2009;
 Jason L, Benton M, Torres-Harding S, Muldowney K. The impact of
energy modulation on physical functioning and fatigue severity among
patients with ME/CFS. Patient Educ. Couns. 2009; doi:10.1016/j.pec.2009.02.015.
Treatment of chronic fatigue syndrome: How to find a 'new equilibrium'?
Journal: Patient Educ Couns. 2009 Sep 19
Despite the vast amount of biomedical literature (some 5000 papers) =
going back to 1934 and the classification of ME as a neurological illness by =
the WHO (ICD-10 G93.3) since 1969, the official UK attitudes as demonstrated =
by the MRC, DWP, Department of Health, and to some extent your own =
organisation NICE: ignore all this evidence, show an ideological
commitment to a psychosomatic/behavioural model of the illness which
is no longer tenablerecommend only cognitive restructuring techniques
(CBT and GET) = that are not remotely curative and have been shown to
be of no lasting =
value and in the case of GET to be positively harmful (Peter White's
assertion that this is because the interventions have been incorrectly
administered has been shown to lack credibility)
From Professor Malcolm Hooper to Sir Michael Rawlings 19 February 2010
I am also extremely worried where this (25% ME Group Response to the
ruling concerning the NICE Judicial Review into ME/CFS Guidelines)
will lead in relation to the so called treatment therapies of
Cognitive Behavioural Therapy and Graded Exercise Therapy. These
treatment s in many cases have caused wide spread problems for ME
sufferers. Our Report from 2004 http://tinyurl.com/
see last page) reported serious flaws in the therapies and also the
fact that many were not helped and a great deal more were harmed by
undertaking these programs. Many of these sufferers were not even
severely affected patients before undertaking the therapies!
We have previously quoted that these therapies are flawed when the
NICE Guidelines were released: “Patient experience of this serious
neurological illness, which affects up to 240,000 people in the UK has
been all but ignored in favour of a psychological approach. The
illness affects many body systems and their functions, and an
estimated 60,000 develop M.E. so severely they become bed or house
bound, with others needing to be tube fed”.
13 March 2009
The legal challenge to the NICE Guideline on ME/CFS was lost in the
High Court today – when it was dismissed by Mr Justice Simon. More
details later. Please find The ME Association’s immediate response
People with ME/CFS now face a situation where doctors will continue to
recommend two forms of treatments that many people with the illness
find ineffective or even harmful.
The ME Association is disappointed that the High Court Judicial Review
of the NICE Guideline on ME/CFS found in favour of NICE.
Recommendations that two controversial treatments – cognitive
behaviour therapy (CBT) and graded exercise treatment (GET) – be
offered as front-line treatments for those with mild to moderate forms
of the illness remain unchanged.
This is despite the findings of the largest-ever survey of ME patient
opinion carried out by The ME Association last year which found that
only 26% were helped by CBT – while 56% reported that GET made them
The ME Association believe that the two people with ME who took up the
legal challenge were fully justified in seeking a court hearing into
the processes used by NICE to draw up the Guideline.
Despite the Judicial Review failing to result in withdrawal of these
potentially dangerous guidelines, The ME Association maintains that
the evidence relating to both clinical and cost effectiveness does not
justify the emphasis and optimism being given to these two treatments.
NICE’s recommendations cannot be justified by the evidence.
Professor Malcolm Hooper
Referring to (ME)CFS and fibromyalgia as somatoform disorders, and
citing an article by Wessely et al, a 2005 paper from Norway
(Biological sensitisation and psychological amplification: Gateways to
subjective health complaints and somatoform disorders. Ingvard
Wilhelmsen. Psychoneuroendocrinology 2005:30:990‐995) fuelled the
“CFS/ME is a somatoform disorder” controversy:
“What messages do we want to convey to the public? I will propose three slogans:
1.Do not listen to your body’s signals! In other words, don’t amplify.
2.Do not trust your feelings!
3.Do not trust your thoughts!
“This is the central theme of CBT. It is an important message to the
public that subjective health complaints are common and seldom an
indicator of serious disease. Cognitive, emotional and behavioural
factors have the capacity to relieve symptoms and even change the
brain. These facts should be highlighted in our message to the
Such a message could prove fatal for some ME/CFS sufferers.
It runs directly counter to the advice given fifteen years earlier by
Dr Darrel Ho‐Yen about CBT/GET: “It has been suggested that a new
approach to the treatment of patients with postviral fatigue syndrome
would be the adoption of a cognitive behavioural model (Wessely S,
David A, Butler S, Chalder T: Management of chronic (postviral)
fatigue syndrome. JRCGP 1989:39:26‐29). Those who are chronically ill
have recognised the folly of the approach and, far from being
maladaptive, their behaviour shows that they have insight into their
illness” (JRCGP 1990:40:37‐39).
Magical Medicine http://www.meactionuk.org.uk/
Professor Malcolm Hooper
“A CBT model of CFS/ME”
The Trial Manual for Participants who were allocated to the cognitive
behavioural therapy (CBT) arm of the (PACE) trial refers to a “CBT
model of understanding CFS/ME” which in the next line has become a
“CBT model of CFS/ME”.
There is no “CBT model of understanding” in respect of understanding
any disorder: people either understand something or they do not.
How offensive it would be if psychiatrists talked about a “CBT model
of understanding” HIV/AIDS, or a “CBT model of understanding” breast
cancer, or a “CBT model of understanding” multiple sclerosis, or
diabetes (which seems to be already happening – see above).
Medical knowledge does not rely on a “CBT model of understanding” a
disease but relies on the science of medicine. To impose such a false
doctrine upon patients with ME/CFS seems tantamount to psychological
abuse of defenceless sick people.
Magical Medicine http://www.meactionuk.org.uk/
Professor Malcolm Hooper
Sharpe describes the “cognitivemodel of CFS/ME” as follows:“A
cognitive model of CFS ,based on systematic observation of over 100
patients meeting criteria for CFS, has been proposed.
The model as a whole attempts to explain how early life experiences
lead to the formation of assumptions that, combined with certain life
stressors, may precipitate CFS in predisposed individuals.
The model then attempts to explain how cognitive , behavioural,
biological and social factors interact in a vicious circle to
perpetuate or maintain the illness. According to this model, the
interpretation of symptoms predominantly in terms of physical illness,
and not in terms of negative emotional states, plays a particularly
important role in the maintenance of the disorder."
To base a theoretical model on around 100 patients, whilst
subsequently ignoring the extensive biomedical evidence obtained on
over 20 2000 patients showing on going viral activity and a disrupted
immune system as perpetuating factors in ME/CFS, thereby wasting
millions of pounds sterling trying to prove the validity of their
non-existentCFS/ME” model, is something for which many people believe
the Wessely School ought to be held to account.
Magical Medicine http://www.meactionuk.org.uk/
This pilot study, based on subjective experiences of ME/CFS sufferers,
does not confirm the high success rates regularly claimed by research
into the effectiveness of CBT for ME/CFS.
Overall, CBT for ME/CFS does not improve patients’ well-being: More
patients report deterioration of their condition rather than
Our conclusion is that the claims in scientific publications about the
effectiveness of this therapy, based on trials in strictly controlled
settings within universities, has been overstated and are therefore
misleading. The findings of a subgroup analysis also contradict
reported findings from research in strictly regulated settings.
[Cognitive behavior therapy for chronic fatigue syndrome from the
patient’s perspective] [Article in Dutch]- Source: Medisch Contact,
Feb 2008 Source: Medisch Contact, February 2008, ISBN:
978-90-812658-1-2, by Koolhaas MP, de Boorder H, van Hoof E. The
“The most important thing about exercise is not to have (patients
with ME / CFS) do aerobic exercise. I believe that even progressive
aerobic exercise is counter-productive. If you have a defect in
mitochondrial function and you push the mitochondria by exercise, you
kill the DNA”"
Cheney P (1999) Lecture given in Orlando, Florida at the International
Congress of Bioenergetic Medicine, 5th-7th February 1999
e van de Sande
It takes the ME sufferer an inordinate amount of time to recover from exercise.
e van de Sande M.(2003) ME/CFS Post-Exertional Malaise / Fatigue and Exercise
Quest #60, June/July, 2003
As much care should be taken in prescribing exercise as in prescribing
pharmaceuticals. ME/CFS patients do not respond to exercise in a manner that is
expected of healthy people.
Sheperd C. (2001) Pacing and exercise in chronic fatigue syndrome.
Physiotherapy 2001 Aug;87(8):395-396.
Severe ME patient
A sufferer recounts the often horrifying impact of this “treatment”
regime on those with severe ME:
“All of my ‘help’ is useless:
I am offered anti-depressants (I am not depressed).
I am offered ‘Behavioural Therapy’ (I have no incorrect illness beliefs).
I am offered ‘Graded Exercise’ (Which even in small moderation, relapses me).
EVEN WHEN I DO THESE ALL AGAINST MY WILL. As an inpatient in Hospital,
my medical records are falsified, and it claims I am ‘obstructive’ to
my own recovery, as these psychosomatic principles have no effect on
me. This is then claimed to be MY fault, not the fact that I am not
mentally ill, and therefore do not ‘recover’ from M.E via mental
In a 2004 survey, members of the 25 % Group found:
* Cognitive behavioural therapy (93% unhelpful) and psychotherapy
* Worsening of condition with graded exercise therapy (tried by
39% of members, and 82% made worse by it)
These results are confirmed by this latest survey in which only one
person who had tried CBT and GET reported that it was helpful.
According to Loveless the ME/CFS patients whom he saw
had far lower scores on the Karnofsky performance scale than HIV
patients even in the last week of their life, indicating a probable
functional ability of between 10 and 20 % of normal. This figure is
highly significant for as Ho-Yen (1994) states, a patient “with
(ME/CFS) should be advised not to increase their activities gradually
until they feel 80% of normal".
Severe ME patient
“I was an in-patient in a psychiatric ward of a London hospital. I was
the only patient who did not have a mental health problem, and
although my CBT therapist had had plenty of experience of working with
M.E. patients, I was the first to be admitted as an in-patient. I only
saw my therapist once a week, and the psychiatric nurses had no
understanding of my illness at all. There was a huge amount of stress,
and I was treated very badly by some of them. I received both CBT and
GET, but the graded exercise seemed to be given priority. I worked
with a physiotherapist, who also had no experience of M.E. I began to
seriously deteriorate, and 4 months in, suffered a major relapse. I
had a kind of undiagnosed 'stroke', collapsed, and became incapable of
looking after myself.
When I went to the hospital I could walk 100 yd., feed, wash and dress
myself. When I left I could not weight bear at all, had no leg muscles
to speak of, and needed two people to transfer me on and off the
toilet and in and out of bed. I had little use of my hands and was
totally bed bound. I could not tolerate sitting upright against the
pillows, conversation was beyond me, and I could barely manage to feed
myself by picking up food in my hands -- cutlery was out of the
question. Nine years later I have improved, but I'm still bed bound”.
Severe ME patient
Giving GET and CBT to people with ME is like trying to prescribe
treatment without first investigating the disease – madness! We need
proper biomedical research to find out the cause(s) of this illness
and to investigate fully what it does to the body. GET and CBT have
been found to be at best unhelpful to those with ME at worse, harmful.
Severe ME patient
After I came home from the hospital where I received CBT/GET therapy,
a physio came to see me once a week. The first one was absolutely
appalling, and used to drag me up off the bed and hold me upright,
even though I was too ill to cope with this, and my body was
collapsing under me. It was a 'fight' really, with her believing that
if I wasn't allowed to sit down, the muscles in my legs would improve,
and I would gradually begin to weight-bear.
Severe ME patient
“I have been ill in different phases for 15 years. I have worked it
out for myself that you can only “exercise” within very narrow limits.
It is simply not the case that you can exercise your way out of this
illness. If it were that simple most people with ME who were
previously very fit and active, would have long since recovered.”
Severe ME patient
Another sufferer describes how, despite an “extensive psychiatric
evaluation” which resulted in a report saying ‘she is severely
physically disabled’, ‘has no mood or behavioural problems’ and ‘is
coping remarkably well given very difficult circumstances’, she was
still offered “CBT and counselling and my symptoms of severe nerve
pain, nausea, difficulties with speaking, sight, swallowing and
eating, seizure like brain activity, intermittent paralysis,
contractures in hands and feet etc were left un-investigated and
Severe ME patient
This sufferer states how: “I could see the sense in graded exercise
and how it could help someone to comeback from an illness and aid in
their recovery but unfortunately with ME this treatment does not work
and just sets you back”.
Severe ME patient
I participated in Graded Exercise therapy via the ‘National M.E
Centre’, Romford, Essex.
This lead to a relapse, at home, and made me unable to sit upright for
1 year due to pressure in my head, and chest pain. I then relapsed and
ended up in my local NHS Hospital in a cardiac care unit.
44% of respondents were offered Graded Exercise Therapy:
Of the 44% who were offered GET 64% tried it and 95% reported that GET
had a negative impact on them:
67% of respondents were offered Cognitive Behaviour Therapy:
Of the 67% who were offered CBT 42% tried it and 96% reported that CBT
had a negative impact on them:
The one sufferer who found GET and CBT helpful, heavily qualified
their supporting statement:
This (CBT & GET) had a positive effect in that it helped me develop
coping strategies to deal with the day to day problems of ME. In no
way was it put forward as a cure & I have never had the impression the
therapist very firmly believes I have a genuine physical illness.
Severe ME patient
Please, please, please start funding research into the physical side
of the illness instead of flogging a dead horse by continuing to
research CBT and GET. The evidence is already there that CBT and GET
don’t work but there are research projects around that look very
promising and they badly need funding.
It (Action for ME) reported a survey of >2000 people and some analysis
of their data. 25% were housebound, 75% had lost their jobs, 77% had
very much reduced social contacts and 92% were not helped by GET.
Gibson Inquiry - Day 1, April 18th 2006 - Group
Beth Llewelyn gave a very moving account of her own illness and the
commonly experienced failures of the medical and benefits system.
* Her GP refused to follow up the many medical reports associated
with her illness, which was not recognised.
* The family had been accused of all sorts of things because she
did not get better.
* 62% of GPs in Wales do not believe in ME.
* She collapsed on the second day of GET.
Gibson Inquiry - Day 1, April 18th 2006 - Group
The number of patients who actually benefit from CBT and GET (Graded
Exercise Therapy) in trials, is less than 10% and a large number of
patients get significantly worse . If anyone benefited from one of
these trials they probably had some form of Chronic fatigue, but they
did not have ME . In reality virtually no research has been carried
out on those who are most severely affected by ME.
What few trials there have been, tend not to deal with the house and
bed-bound. As Neil Abbot (2004) points out: "very few studies exist,
and all define "severe illness" in different ways, complicating
interpretation of the findings. And specific laboratory-based or
experimental studies on severe sufferers are as rare as hens' teeth."
. The relevance of the psychiatric approach to the severely
affected, now being rolled-out as a nationwide programme, is based on
only one report in the scientific literature, , and that involved
two wheelchair-bound participants who were actually able to attend a
clinic in the first place.
1. Text of speech by Alex Furguson to the Scottish Parliament June 9 2005
3. Abbot N (2004)
Severely Overlooked by Science — An Overview of Research on
Severely-ill People with ME, MERGE
Issues related to severe ME and the involvement of the UK Psychiatric
The difference between pacing and Graded Exercise Therapy is well
described by the pacing expert Ellen Goudsmit C. Psychol. AFBPsS, UK:
"GET as understood by psychologists and doctors would encourage
patients to keep to the plan. ....... Some therapists see the
deterioration and allow patients to stop and rest. ...... But that's
not standard GET and not mentioned in any publication I ever read.
It's certainly not in the trials cited in the draft [NICE
Guidelines]). The idea is to plod on and complete the plan.. As
discussed, Stulemeijer kicked out all those who could not keep the
plan. Prins et al excluded those they felt might not be able to stick
to the plan at the intake. Wessely allowed patients to reduce but not
stop ...... If people can stop when they begin to feel unwell, it's
pacing. It's the patient listening to their body. That's anathema in
the CBT lit on CFS. ....
Pacing is about hour-to-hour management. There's no agreeing plans
a forthnight earlier. It requires mores self-discipline than GET or
GA. It's an easy principle but not an easy option."
Countess of Mar
“During the Committee Stage of the Welfare Reform Bill – debates from
Clause 9 onwards in the Lords, I managed to extract from the Minister
statements to the effect that people with CFS/ME would not be forced
to do CBT/GET in order to continue to get their benefits”.
That debate is recorded in Hansard (Lords) on 28th February 2007, column GC198:
Countess of Mar: "If a group of people refuses graded exercise and
cognitive behaviour therapy, on the basis either that they are afraid
or that they know it will not help them, will they be penalised?"
Lord McKenzie of Luton (Parliamentary Under-Secretary, Department for
Work and Pensions; Labour Peer): "there is no requirement for
individuals to carry out any specific type of activity or treatment.
That cannot be sanctioned".
The Grace Charity for ME
SAYING NO CAN BE POSITIVE
Those who wish to refuse psychological therapies for M.E. can be
supported by the following facts:-
1) The law protects patients from unwanted treatments
Medical practitioners cannot give a treatment to a patient without the
2) Private Health Insurers cannot force an M.E. client to undergo
unwanted treatment before making a payment, unless those treatments
are specified in the contract
Unless the contract of a company states clearly that M.E. clients must
undergo CBT and/or graded exercise before a payment is made, the
company could well be in breach of contract. Also, every individual
has freedom to express views as stated by The Human Rights Act 1998.
If an insurance company ignores a client’s reasons for refusing CBT
and/or graded exercise, a client could claim their ‘freedom of
expression’ has been violated [i].
3) An M.E. patient cannot have their state benefits withdrawn for
refusing CBT and graded exercise.
U.K. law says that if a patient refuses suitable treatment without
good cause, benefits can be withdrawn [ii]. However, CBT and graded
exercise could be argued as unsuitable treatments for M.E. sufferers
(see facts below).
4) M.E. is a neurological disorder
It has been classified as such by the World Health Organisation in the
International Classification of Diseases since 1969 [iii]. Therefore
psychological therapies could well be inappropriate.
5) M.E. has a strong medical history of being an organic disease
Dr.Gordon Parish is the curator of the Ramsey Archive, which is
possibly the world’s largest collection of medical papers on M.E.
[iv]. It includes detailed world-wide epidemics of M.E. since 1934 and
the viruses which triggered the disease.
6) Many tests exist in aiding a diagnosis for M.E. Therefore, using
psychological therapies for ‘unexplained fatigue’ is inappropriate
Although diagnostic tests for M.E. are still being worked upon with
promise, nevertheless many tests and procedures can be administered in
aiding a diagnosis of M.E. These include the use of SPECT, MRI and PET
scans, test for NK cell activity and endocrine abnormalities, Tilt
Table Test, viral tests and many more [v]. Although these tests aren’t
always offered by the NHS for M.E., they have nevertheless shown
evidence of physical abnormalities.
7) “Patients who improve after physical exercise programmes do not
says Dr. Byron Hyde, M.D. of the Nightingale Research Foundation for
M.E. in Canada, who has studied M.E. since 1984 [vi]. Dr. Hyde
stresses that M.E. is primarily a disease of the Central Nervous
8) Patients who respond well to CBT and graded exercise might not have
M.E. due to the diverse criteria used. Some criteria focus on
unexplained chronic fatigue only, omitting symptoms showing central
nervous system involvement
There are at least ten definitions of Chronic Fatigue Syndrome [viii].
In the U.K., a frequently used case definition is the Oxford Criteria
which includes patients with no physical signs and selects subgroups
of patients with high levels of psychiatric diagnoses .[ix] The PACE
and FINE trials use the Oxford Criteria. [x]
9) The assumption that an M.E. patient can always do more is an
erroneous one There are overwhelming international research findings
on M.E., which support multi-system involvement particularly of the
immune, endocrine, cardiovascular and neurological systems. [xi]
Also, there is evidence indicating pathology of the central nervous
system and immune system [xii] and evidence of metabolic dysfunction
in the exercising muscle. [xiii] Also, Dr. Jay Goldstein has
demonstrated through SPECT scans the severely decreased brain
perfusion of an M.E. patient 24 hours after physical exercise. [xiv]
The Canadian Criteria (2003) states that the worsening of symptoms
after exertion is a principal symptom of M.E. [xv] Raised levels of
noxious by-products of abnormal cell membrane metabolism, associated
with exercise and correlating with patients’ symptoms have been
10) CBT and Graded Exercise can worsen M.E. symptoms
In a survey of 3074 M.E./CFS patients conducted between 1998 – 2001,
55% of patients said that CBT had made no difference to their illness,
whilst 22% said CBT had made their illness worse. 16% of patients said
that Graded Exercise had made no difference to their illness whilst
48% said it had made their illness worse [xvii]
A survey by the 25% ME Group (for severe sufferers) of 437 patients,
demonstrated that of the 39% of group members who had used graded
exercise, 95% had found this therapy unhelpful, whilst –
82% reported their condition had been made worse by graded exercise.
Some patients were not severely ill with M.E. until after graded
In the same survey –
93% of those who had undergone Cognitive Behavioural Therapy had found
it unhelpful [xviii]
See also the ME Conference 2006 DVD.
11) The CMO’s Report recommended CBT and graded exercise despite the
objection of two patient support groups
The patient support groups of BRAME (Blue Ribbon for the Awareness of
ME) and the 25% ME Group refused to endorse the CMO’s Report of 2002
based on its recommended treatments of CBT and graded exercise. These
support groups mainly represent the needs of severe M.E. sufferers and
were part of the CMO’s Working Group.
12) Medical Concerns have been raised about the CMO’s Report
The Journal of Chronic Fatigue Syndrome, [xix] mentions criticism by
health professionals and the public of both the British and the
Australian M.E./CFS guidelines.
“These criticisms included claims of bias in the recommendations
toward a psychiatric outcome and failure to understand the limitations
of patients to perform exercise programs as well as many others.”
1 The Human Rights Act 1998, European Convention for the Protection of
Human Rights and Fundamental Freedoms, Section 1, Article 10, no.1
2 U.K. law on state benefits, Regulation 18 Social Security
(Incapacity For Work) Regulations. A similar law applies to other
state benefits for sickness and disability.
3 World Health Organisation - International Classification of Diseases 10-G93.3
4 What is ME? What is CFS? Information For Clinicians and Lawyers,
Dec. 2001, Marshall, Williams, Hooper, page 11. Available from Prof.
Malcolm Hooper, Dept.of Life Sciences, University of Sunderland SR2
5 Leaflet A Physician’s Guide to Myalgic Encephalomyelitis Chronic
Fatigue Syndrome, The Nightingale Research Foundation, Vol.1, Issue 7,
revised, 1992, page 17. Also, Journal of Chronic Fatigue Syndrome Vol
. II, No.1, 2003, Canadian Criteria, page 25, The Haworth Press Inc.
6 Ibid., A Physician’s Guide to Myalgic Encephalomyelitis Chronic
Fatigue Syndrome, page 25
7 Clinical Observations of Central Nervous System Dysfunction in
Post-Infectious, Acute Onset M.E./CFS, page 38, The Clinical and
Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome
1992, Byron Marshall Hyde, M.D., The Nightingale Research Foundation.
8 Report from the National Task Force on Chronic Fatigue Syndrome,
Westcare, Bristol 1994. This states nine definitions: the recent
Canadian definition in 2003 makes ten.
9 Katon & Russo, 1992; Freiberg, 1999, Unhelpful Counsel? MERGE’s
response to the CMO report on CFS/ME, 2002, p15.
10 See the website of the Medical Research Council at www.mrc.ac.uk
11 ME and/or CFS paper, September 2001, page 1, V.A. Spence PhD,
Chairman of MERGE ( ME Research Group for Education and Support). This
paper quotes from several published findings. Available from MERGE,
The Gateway, North Methven Street, Perth PH1 5PP
12 The Biology of the Chronic Fatigue Syndrome, Prof. Anthony
Komaroff, The American Journal of Medicine 2000: 108: 99-105.
13 Mitochrondrial abnormalities in the postviral fatigue syndrome,
Behan, W.M.H. et al., Acta Neuropathologica 83, 1991, pages 61-65.
14 The Negative Effects of Exercise on an M.E./CFS Dysfunctional
Brain, page vii, The Clinical and Scientific Basis of Myalgic
Encephalomyelitis Chronic Fatigue Syndrome 1992, Byron Marshall Hyde,
M.D., The Nightingale Research Foundation.
15 Journal of Chronic Fatigue Syndrome Vol. 11, No.1, 2003, Canadian
Criteria, page 22, The Haworth Press Inc.
16 Oxidative stress levels are raised in Chronic Fatigue Syndrome and
are associated with clinical symptoms, Kennedy, Spence, Belch, Free
Radical Biology & Medicine 2005:39:584-589
17 Directly from the Horses’ Mouths, Doris M. Jones MSc, Reference
Group Member, CMO’s Working Group. This survey was part of the Working
Group on ME/CFS set up by the Chief Medical Officer Sir Kenneth Calman
18 Analysis Report by 25% ME Group March 2004 www.25megroup.org
19 see footnote 15, page 2 of the Editorial .
‘Saying No Can Be Positive’ has been produced by The Grace Charity for M.E.
The Sussex CFS referral criteria consists of the presence of
unexplained fatigue, and gives emphasis to “illness beliefs”, and so
does not even identify the hallmarks of Neurological/Immunological ME
G93.3, but instead identifies chronic fatigue, a common symptom of a
wide range of conditions including many psychiatric disorders. In the
ICD Chronic Fatigue is listed as a completely different disorder to
ME, CF is in ICD F48 Neurasthenia, in the psychiatric section.
The Sussex referral criteria also requires that the patient agrees to
have a Biopsychosocial and management assessment, and then offers
“management” with CBT and GET which does not have the evidence base
to justify such expenditure of millions and 11 wasted years since the
CMO’s Working Group was convened in 1998, not to mention wasted lives
of patients with Neurological, Immunological ME....
Selected Emails/Letters to Dr Turner for May 5 Deadline
... Re. the APPG on ME Inquiry into NHS Services, will you be asking
the CNCC at Barts London for evidence?
Please note (1) the patients' leaflet is entitled 'The Chronic Fatigue
Service' (2) the Referral Criteria says, 'A primary complaint of
unexplained fatigue' (3) the unit offers GET and CBT .
Is this consistent with the illness described by WHO ICD G93.3 (which
the APPG recognises) and Canadian Criteria?
Selected Emails/Letters to Dr Turner for May 5 Deadline
ME Research UK
Indeed, when Clinical Guideline 53 is placed side by side with other
Clinical Guidelines in the NICE pantheon, representing 19 different
clinical conditions (see the table in “The NICE Guideline: what's the
problem?” in the Spring 2008 issue of Breakthrough, pdf 53 KB), it can
be seen that while CBT is postulated to be a main intervention for a
range of psychological conditions, ME/CFS is the only physical
condition in this list for which the therapy is flagged up as a
primary specialist management approach in a NICE guideline. This is a
rum business, particularly since Clinical Guideline 53 (full version,
page 252) is clear in stating: “The [Guideline Development Group] did
not regard CBT or other behavioural therapies as curative or directed
at the underlying disease process, which remains unknown. Rather, such
interventions can help some patients cope with the condition and
experience improved functioning, and consequently a improved quality
The NICE Clinical Guideline: from content to clinic
In contrast to Cleare's assertions about the “favourable evidence” for
the “long-term benefit” of CBT international attempts in Australia
and America to replicate the claimed success of the Wessely School
psychiatrists for those with ME/CFS have not been successful.
By analogy, is Cleare claiming that the physical symptoms of multiple
sclerosis can also be reversed by psychiatrically “corrected”
cognition processes and exercise?
Does Cleare believe that the established laboratory abnormalities seen
in ME/CFS are simply inconsequential epiphenomena? Is he confident
that in terms of restoring ME/CFS patients to asymptomatic pre-morbid
levels of functioning, CBT/GET can restore damaged mitochondria; that
CBT/GET can address the confirmed (published) vascular abnormalities
- specifically the blood vessel sensitivity to acetylcholine which
affects only those with ME/CFS and not other groups (such as Gulf War
Syndrome and those with Organophosphate-exposed illness) who are
equally disabled and who fulfil criteria for chronic fatigue syndrome;
that CBT/GET can restore a leaky gut and a non-intact blood brain
barrier; that CBT/GET can prevent the prominent immune derangements
seen in ME/CFS such as humoral autoimmunity against polypeptides of
the nuclear envelope (the occurrence of autoantibodies to an
intracellular protein like lamin β1 provides laboratory evidence for
an autoimmune component in ME/CFS ); that CBT/GET can modulate
increased neutrophil apoptosis; that CBT/GET can restore maximum
oxygen delivery and optimum lung function tests; that CBT/GET can
restore an increased CD4-CD8 ratio; that CBT/GET can restore an
up-regulated antiviral pathway and that CBT/GET can reverse recurrent
pancreatitis, cardiomyopathy and hair loss and that it can control
vertigo and observable nystagmus, double vision, nausea, bladder and
bowel dysfunction, neuromuscular incoordination and intractable pain,
all of which may occur in ME/CFS?
Dysfunctional Beliefs In ME/CFS? www.hfme.org/
Mill Crescent resident Jeannie Carson suffers from ME, and has
criticised the NHS's view of the illness which looks at it as a
psychiatric condition, with treatment including cognitive behavioural
The former Pembury Hospital midwife feels the healthcare system is
wrong for labelling it in this way, and says it should be treated as a
The 67-year-old spends most of the day bed-bound and as well as the
overwhelming tiredness, she suffers muscular pain, difficulty walking,
and feelings of isolation and loneliness.
She has shunned her treatment through psychiatric methods and now gets
by with the help of a carer.
"I was very active, I didn't want this ME," she said.
"There are times when I get angry and frustrated because I am unable
to be as active as I want to be.
I feel they are being unfair.
"How dare they say it is a psychological illness? I did not ask for this."
Miss Carson is a member of The Grace Charity for ME which sends
treatment guidelines to all surgeries in Kent and Medway.
'NHS must not treat ME as a mental illness'
Mary M. Schweitzer, Ph.D.
Kings College, London, follows the theory that
patients with CFS hold "inappropriate illness beliefs,"
and they have to re-learn that (1) they are well,
through cognitive behaviour therapy (CBT), and (2)
they can be reconditioned, through graded exercise
therapy (GET) - and then they can happily go back to
work and family.
These theories have sent children and even adults to
foster care or psychiatric hospitals for the sin of
having "chronic fatigue syndrome."
Simon Wessely: Pay Attention GIGO ...
Pay Attention To The Data Set
Maryann Spurgin, Ph.D.
In 1994, a group of government propagandists and psychiatrists on the
take from insurance companies created one of the most damaging
documents in the fifty-year history of ME/CFS: the 1994 Centers for
Disease Control Case Definition. Hillary Johnson was one of the first
harshly to criticize the document in her book Osler’s Web, stating
that the criteria were too broad and failed to describe the disease
with which she and so many of us had been stricken, the disease that
caused post-exertional sickness and neurological problems. Instead, it
selected heterogeneous fatigue states under the CFS umbrella. This
lead to inconsistent research results and inappropriate treatment
protocols like cognitive behavioral therapy (CBT) and graded exercise
therapy (GET), which caused many patients to become worse.
Review of : "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
Clinical Working Case Definition, Diagnostic and Treatment Protocols,"
J of Chronic Fatigue Syndrome, Vol. 11 (1) 2003, pp. 7-116. Bruce M.
Carruthers, MD, CM, FRCP(C); Anil Kumar Jain, BSc, MD; Kenny L. De
Meirleir, MD, PhD; Daniel L. Peterson, MD; Nancy G. Klimas, MD; A.
Martin Lerner, MD, PC, MACP et al.
Countess of MAR
: “ What are we doing to our teenage ME suffers when we force them
back to school, deny home tuition, and tell them to exercise as form
of therapy ? What will happen in 30 years time to children now getting
ME in a climate where they are disbelieved and told to pull themselves
Countess of Mar’s address in the House of Lords, 22 Jan 2004
The UK Government has spent millions of pounds setting up clinics
across the country which offer a common treatment programme of Pacing,
CBT (cognitive behavioural therapy) and GET (graded exercise therapy).
According to one job description (2005) : "severely disabled,
fatigued patients and relatives (will be required ) to change
perpetuating illness behaviour and perform a self-managed activity
programme, regulate disturbed sleep patterns and modify predisposing
Royal Liverpool & Broadgreen University Hospitals NHS Trust , Job
title: Trainee Clinical Fatigue Therapist, Chronic Fatigue Treatment
Service Ref: 2570, January 2005
Stein E (2007) points out how when measured objectively the CBT
trials delivered no statistical change.
Regarding the graded exercise therapy (GET) trials , Stein states
that only two RCT’s had positive results, but after 24 weeks there
were no benefits at all. Another study had no control group, and its
conclusion was that “exercise capacity should not be used as an
outcome criterion – the reason is because they could not find any
change”. A Belgium study concluded that “the results are less robust
than expected and it was noted that complete recovery was never
Stein E (2007) Behavioural Interventions in ME/CFS New Horizons
International Conference on ME/CFS Research, ME Research UK and the
Irish ME Trust DVD
It is very important to note that internationally CBT and exercise are
viewed as a coping strategy, to help people to "adjust to the
limitations of the disease. It does not attempt to convince them (as
in the UK, where it is used as a "treatment") that there is nothing
physically wrong with them."
Elsie Owing in Eileen Marshall and Margaret Williams Deliberate
Dichotomy? 10th November 2004
Severe ME patient
Graded Exercise Therapy worsened me dramatically and I have no doubt
had been a large factor in my being severely affected after 20 years.
Cognitive Behavioural Therapy - this did not make me worse but I feel
was completely inappropriate and didn't have any relevance to my day
to day life.
Greg Crowhurst East Anglia ME patients (EAME) Survey of the Severely
Severe ME patient
I've had CBT and GET. Both of these made me extremely worse for a
number of years and from which I am still recovering from and which
has still affected me."
Greg Crowhurst East Anglia ME patients (EAME) Survey of the Severely
Severe ME patient
“Hydrotherapy, using a form of GET, made me more
and more ill and I developed spasms.”
“Common sense helps with pacing and graded exercise etc. CBT and GET
I don’t think are helpful, as often any course is very draining and I
cannot concentrate anyway”
Greg Crowhurst East Anglia ME patients (EAME) Survey of the Severely
Ashenfelter (2007) , for example, describes how one ME sufferer ,
referred in May 2007 to the National Hospital for help in managing
their illness and pain control, was placed in a mental ward,
alongside suicidal patients and “immediately put on a Cognitive
Behaviour Therapy and Graded Exercise programme and was denied pain
relief….. Her privately employed carer was phoned up at home and told
to no longer care for her in the future. “
Ashenfelter C (2007) Hospital Warning, The Quarterly, 25% Severe ME
Group, Newsletter, Issue 24, Winter 2007, p. 19
Nolan (2007) outlines how in submissions to NICE, The British
Psychological Society said that “there is no evidence that GET (with
or without CBT) actually increases activity levels”, the Royal College
of Physicians said “Clinical evidence and patient experience suggests
strongly that some patients may be worsened with GET”, while the
Association for British Neurologists said that “the guideline needs to
be thoroughly revised to reflect our current understanding of this
condition rather than the supposition of the psychiatrists”.
Nolan R (2007) A serious lack of evidence for NICE guidelines BMJ
Rapid Responses to R Baker and E J Shaw Diagnosis and management of
chronic fatigue syndrome or myalgic encephalomyelitis (or
encephalopathy): summary of NICE guidance
BMJ 2007; 335: 446-448
Chief Medical Officer
The Chief Medical Officer (2002) has warned that exercise-based
regimes advocated for less severely affected patients tend not to have
been studied among those most severely affected.
Department of Health (2002a) , A`Report of the CFS/ME Working Group.
Report to the Chief Medical Officer of an Independent Working Group,
London, The Stationary Office.
…the "revalidation therapies" for patients with ME/CFS, which are
monopolized by the governmental institutions for example in the UK,
Belgium and the Netherlands, are not only not efficient, but also
aggravate the condition of many patients.
Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise
therapy (GET) are declared to be the only possible therapies.
A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also
potentially very harmful.
Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many
patients with ME/CFS.
The work capacity decreased as well!
The review also explains why GET and exercise do aggravate
characteristic complaints, like “fatigue”, pain, neurocognitive
problems (e.g. concentration and memory).
Pre-existing biological aberrations, e.g. inflammation, oxidative
stress, and dysfunctional ion channels, will be amplified by a minor
exertion, like walking or reading a book … and by “rehabilitation
therapies” like CBT/GET.
GET and CBT HARMFUL FOR ME/CFS
Frank NM Twisk, Michael Maes
We conclude that it is unethical to treat patients with ME/CFS with
ineffective, non-evidence-based and potentially harmful
"rehabilitation therapies", such as CBT/GET.
[A review on CBT and GET in ME/CFS: Not only ineffective and not
evidence-based, but also potentially harmful] – Source:
NeuroEndocrinology Letters, Sep 15, 2009
The July 2007 document ‘Defiance of Science’ by M Hooper et al (
www.meactionuk.org ) provides details of studies and references which
showed that prescribed exercise programmes for ME/CFS patients not
only cannot be complied with by them, but also results in worsening of
ME/CFS symptomatology (p3/4). In addition a number of references are
given of statements made by some of the very UK psychiatrists who
advocate these regimes, especially also CBT. For instance:
At the American Association for CFS (AACFS, now the IACFS/ME)
International Conference at Cambridge, Mass., on 10-11th October 1998,
Wessely-School psychiatrist Michael Sharpe went on record stating that
the benefits of CBT faded with time.
On 3.11.2000, Sharpe again confirmed “There is a tendency for the
difference between those receiving CBT and those receiving comparison
treatment to diminish with time due to a tendency to relapse in the
Wessely himself is on record stating that CBT doesn’t work for all: in
his Editorial (JAMA 19.9.2001:286:11) he stated that CBT + GET are
only “modestly effective” and that neither is “remotely curative”.
Wessely is also on record as stating: “It should be kept in mind that
evidence for randomised trials bears no guarantee for treatment
success in routine practice. In fact, many CFS patients, in
specialised treatment centres and the wider world, do not benefit from
these interventions.” (The art of diagnosis: pros and cons of
labelling chronic fatigue syndrome. Marcus JH Huibers + Simon
Wessely. (Psychological Medicine, 2006:36(7):895-900).
CBT is just as effective for a neurological illness as watching grass
grow….which is a lot cheaper actually…
88 Susan Wenger
CBT may help people with garden-variety chronic fatigue. It does NOT
reduce the severity of symptoms of chronic fatigue SYNDROME, which is
an organic disease.
Put it this way: sending a CFS patient to a therapist is much like
sending someone with multiple sclerosis to a therapist. At best, it
can help the person cope with the emotional difficulties of living
with a (so far) incurable disease. It's not going to ameliorate the
M.E./CFS is not a mental condition, it is a neurological illness & CBT
has been repeatedly found by patient group surveys to worsen the
already debilitating symptoms.There is overwhelming research evidence
proving it is a physical illness. 80% of sufferers never recover, &
some live their lives in darkened rooms unable to speak or swallow. It
is time that the nursing profession stopped colluding with the
powerful psychiatric lobby that have redefined M.E. as a somatisation
disorder to their own personal gain. This redefinition makes sufferers
already difficult lives impossible. It is not acceptable enough in
2008 for the nursing profession to 'just follow orders' in the
treatment of M.E. patients as if they have a mental illness.
WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E.
ME/CFS is an acquired organic, pathophysiological, multi-systemic
illness that occurs in both sporadic and epidemic forms. Myalgic
Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as
a neurological disease in the World Health Organization's
International Classification of Diseases (ICD). Chronic fatigue must
not be confused with ME/CFS because the "fatigue" of ME/CFS represents
pathophysiological exhaustion and is only one of many symptoms.
Compelling research evidence of physiological and biochemical
abnormalities identifies ME/CFS as a distinct, biological clinical
Dr John Greensmith
When therapists - or, sometimes, the patients themselves -claim that
CBT has helped their CFS, there are always other possible
explanations, such as improvement with time, resting or pacing, which
CBT advocates choose to ignore or overrule.
This month, at a Conference at the University of East Anglia,
Professors Mick Cooper & Robert Elliott from Strathclyde University
showed that the efficacy of CBT is a 'myth' and we are probably
wasting millions of pounds.
My daughter who has severe ME has attended 25 CBT sessions. It has
helped her to deal with the depression caused by this awful disease
but it has definitely caused deterioration in her ME symptoms which in
turn brought the depression back, as strong as ever. Overall-
drawbacks outweigh the benefits manifold.
92. Dr John Greensmith
The spectacular results claimed for CBT and GET depend on the say-so
of advocates and practitioners, unsupported by any independent
evidence. The latest review (Twisk & Maes, September 2009) confirms
that all the research to date shows that CBT is ineffective and GET
makes matters worse for M.E. sufferers. Yet, astonishingly, there are
calls for even more funding to expand the service.
Few, if any, voices are heard in opposition. Government ministers are
perhaps relieved that they can be said to be offering something rather
than nothing. Busy GPs may assume that the NICE guidelines are firmly
scientifically based and not even check the literature. Those with any
concerns may be remain silent rather than question the medical
establishment and patients who have been hurt may be reluctant to say
so for fear of being left even more isolated. The wailing and gnashing
of teeth is still audible for all but deaf ears.
Open letter to Professor Sir Liam Donaldson, Chief Medical Officer
RiME is particularly concerned about the plight of severely affected
PWME. Most mail comes from the latter. These people are desperate for
hope. One person wrote recently: "I don't want more GE/CBT/Pacing...
I'm sick of it. I just want someone to investigate what is going wrong
with my body. It's as simple as that."
Patricia Sanders and Jakob Korf, PhD
Chronic fatigue syndrome (CFS) is now recognized as a medial disorder.
In contrast to recent related reports, the present review focuses
primarily on aetiological aspects of CFS. Four major hypotheses are
reviewed. (1) Although CFS is often associated with viral infection,
the presence of viruses has as yet not consistently been detected. (2)
It is not clear whether anomalies of the HPA axis often observed in
CFS, are cause or the consequences of the disorder. (3) Immune
dysfunction as the cause of CFS is thus far the weakest hypothesis.
(4) The psychiatric and psychosocial hypothesis denies the existence
of CFS as a disease entity. Accordingly, the fatigue symptoms are
assumed to be the consequence of other (somatic) diseases. Other
possible causes of CFS are oxidative stress and genetic
predisposition. In CFS cognitive behavioural therapy is most commonly
used. This therapy, however, appears to be ineffective in many
patients. The suggested causes of CFS and the divergent reactions to
therapy may be explained by the lack of recognition of subgroups.
Identification of subtypes may lead to more effective therapeutic
Neuroaetiology of chronic fatigue syndrome: An overview
World Journal of Biological Psychiatry
2008, Vol. 9, No. 3, Pages 165-171 , DOI 10.1080/15622970701310971
People with M.E don't want sympathy - they just want the nonsense to
stop. They want proper biomedical research to be funded at government
level, they want the patronising, arrogant approach of the champions
of CBT to stop. CBT and graded exercise will not cure M.E - it may
cure other things but it will not cure M.E. People with ME are no more
mentally ill than the rest of the population. There is in fact NO
evidence that CBT and graded exercise help people with genuine M.E.
There *is* however evidence that graded exercise can make people with
M.E worse. Testimonies of people with M.E were actually ignored in the
“At present there is no convincing evidence that any treatments work
except CBT and graded exercise.'Nonsense. In fact, as has been pointed
out this may actually make matters worse.The reason that CBT is touted
for ME and Depression is that the Government is basing Pathways to
Work on the American welfare system where the Insurance companies
involved are allowed carte blanche in efforts to get people off
welfare.This includes fitting the illness to the desired cost outcome
regardless of clinical need.
Why are there millions of CBT studies but no psychologist has ever
done one in patients with (very) severe ME? Just think about it.
If CBT would be the solution and the wonder therapy why is there no
study showing that patients who are tube fed can eat again because
they had CBT? Or they don’t need washing in bed or a bottle for
urinating because they now can walk again. The reason is very simple.
Of the patients with (very) severe ME, almost all of them have ME.
They don’t have psychiatric illnesses or fall in the category, we are
all a bit tired at times. It would be really nice if CBT would
help/cure them but that is just as likely as it would help patients
walk again if they are wheelchair bound due to MS or a spinal cord
injury after an RTA. And that is the real reason why there are no CBT
studies in patients where there is no doubt that they have ME. And
don’t say we can’t find those patients with (very) severe ME, because
estimates say there are 50-60,000 of them in the UK alone.
Back to Basics http://www.bmj.com/cgi/
Dr Derek Englander
I decided to attempt to determine the effectiveness of the Graded
Exercise Therapy (GET) protocol in a known patient group suffering
from Myalgic Encephalomyelitis (ME). The protocol was tested in a
simple manner without double blinding but the original research was
also subjective. Twenty patients with Myalgic Encephalomyelitis (ME)
diagnosed according to the Fukuda criteria (3) were started on the GET
protocol. After 24-48 hours of the onset of GET, twelve of the
patients succumbed to relapse in their symptoms: massive fatigue,
increased muscle pain, pains in joints, brain "fog". During the
following week seventeen of the twenty patients suffered from
increased symptoms as delineated above. The protocol was continued for
three weeks. There was no improvement. Some patients were so severely
affected that they were bedridden for four weeks following the
GET was pronounced as the most effective method of treatment of ME by
NICE. From this short but rather apparent review of the GET protocol,
it is obvious that either the study group used initially by the NICE
research did not suffer from ME or the results were not adequately
analysed. It is apparent that this treatment is not the treatment of
choice, in fact it is detrimental to the well being of the ME patient.
The psychiatric psychopolitical group have used GET as a lever to
support their theory, GET is unhelpful and unhinges their theory.
NICE and ineffective GET Therapy
Dr Andrew Ashley
I have been going through the responses and in Belgium 18% worked
before CBT and Nijmegen claims 69% gets cured by CBT than 18 plus 69 =
87%, so 87% should be back at work after CBT. But apparently it is
only 14.9%; so what is the evidence for treating ME with CBT?
CBT makes you more ill http://www.bmj.com/cgi/
On the issue of group CBT, which is available in many NHS CFS services
around the UK, St Bartholomew's Hospital Chronic Fatigue Services gave
the following research information: "The only RCT of CBT using a group
approach showed that the treatment was no better than either usual
medical care or supportive listening in improving physical function,
one of its two primary outcomes, which it was designed to improve
(O'Dowd H, Gladwell P, Rogers CA, Hollinghurst S, Gregory A. Cognitive
behavioural therapy in chronic fatigue syndrome: a randomised
controlled trial of an outpatient group programme. Journal: Health
Technol Assess. 2006 Oct;10(37):1-140). A non-randomised waiting list
control trial of group delivered CBT found only modest effects on
fatigue and negative effects on function (Bazelmans E, Prins JB,
Lulofs R, van der Meer JWM, Bleijenberg G. Cognitive behaviour group
therapy for chronic fatigue syndrome: a non-randomised waiting list
controlled study. Psychotherapy & Psychosomatics 2005;74:218-24)."
Stakeholders comments on Draft Guidelines make for interesting reading
Dr Peter Saunders
Tip FIVE: discuss CBT, if it cures the patient your diagnosis of ME was wrong.
Tip SIX: ME patients have the so called threshold phenomenon, meaning
that they can’t increase their stamina like healthy people. If they
can or if GET helps to improve their stamina then again, the diagnosis
of ME was wrong.
Quick guideline to ME for busy GPs