Friday, March 5, 2010

16 Good Reasons to be very suspicious of Action for ME.

16 Good Reasons to be very suspicious of Action for ME.

Greg Crowhurst
5th March 2010

From the literature, here are 16 good reasons to be very suspicious of Action for ME (AfME).

1.


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. "

http://www.medicalnewstoday.com/articles/138099.php

National Charity Supports NICE: Judicial Review 11-12/02/09, UK


2.

Malcolm Hooper

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

3..

Malcolm Hooper


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

4.

Margaret Williams

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
http://www.sophiaandme.org.uk/collusion.html

5.

William Bayliss

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/


6.

Jodi Bassett


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
http://www.wellsphere.com/chronic-fatigue-syndrome-article/a-warning-on-cfs-icd-cfs-and-me-cfs-research-and-advocacy-by-jodi-bassett-and-co-authored-edited-by-lesley-ben/658439

7.

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

http://www.25megroup.org/Campaigning/Gibson%20Inquiry%20Information/Margaret%20Williams%20Submissions/ME%20%20WHY%20NO%20ACCOUNTABILITY.doc.


8.

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
http://www.meactionuk.org.uk/ME_Exists_-_True_or_False.htm

9.
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.

R.E.S.C.I.N.D.
The Countess of Mar
House of Lords Debate, April 16, 2002

Critique of the Chief Medical Officer's Report
and Indictment of Simon Wessely

http://www.rescindinc.org/countessmar.html

10.

Paul Davis

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 . . .

http://www.rime.me.uk/forT.doc.

11.

Stephen Ralph


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
Stephen Ralph
28th February 2009

http://www.meactionuk.org.uk/Why_the_CISSD_Project_MUST_Fail.html

“Action for M.E., the country’s biggest M.E. charity, supports the guideline.”

12

ME Agenda

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
http://meagenda.wordpress.com/2009/03/13/action-for-me-statement-high-court-challenge-against-nice-is-dismissed/


13.

Sue Wheeler

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.

http://www.thirdsector.co.uk/news/Article/807171/Action-membership-row/

14.

Nigel Speight

Dear all

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

Nigel Speight”
http://www.facebook.com/group.php?gid=

15.

Facebook

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.

http://www.facebook.com/group.php?gid=161202941967

16

Simon Lawrence

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.

Yours

Simon Lawrence
Chairman

http://meagenda.wordpress.com/2009/03/23/25-me-group-resigns-from-forward-me/

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