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Formation of a Breakthrough Prayer Circle

It has been suggested that we form a Breakthrough Prayer Circle, for anyone who wants to join in, on Saturday 2 October at 9pm  BST. For anyone who feels too ill, or too stressed,   to pray the prayer themselves, please just click onto this  Video of Linda praying it :



 The Breakthrough Prayer

by Theresa and Pauline

God our Father, we love you and know you love us. Today with one voice we beseech you to help us in our suffering.

May we bathe in the light of your love and healing, giving us strength to get through each day. By the power of your Holy Spirit uplift our carers and lighten their heavy load in dealing with this unrelenting illness and their own despair.

Enfold in your special love, those who live alone enduring further isolation and loneliness. Dearest Father we pray fervently for a major medical breakthrough in ME.

Bring your Divine inspiration to the researchers of this terrible disease, which is sweeping across your beloved earth .

May the mountain of ME be removed and thrown into the sea.

Through our faith we trust and thank you , in the name of Jesus Christ, your Son, Our Lord. Amen.

 ---------------------

Theresa, one of the author's of the Breakthrough Prayer explains how this very powerful  prayer came to be written :

it "all came about as I was contemplating the plight of children struck down with M.E.and the horror faced by their parents, struggling to keep them out of psychiatric units; sometimes forced to leave the area and find refuge in safer counties where better understanding through a sympathetic pediatrician might be found.So I phoned my friend Pauline and the prayer came into being."

The first Breakthrough Prayer was prayed in 2001.












"

A Letter to Ed Miliband

A Letter to Ed Miliband
Greg Crowhurst 28th Sept 2010

(Permission to Repost)


Dear Ed Miliband,

Back in 1997, when New Labour first got elected, my wife had been very sick for 4 years. Today, when you give your first speech as Leader of the Opposition, she will have been ill for 17 years; in all that time nothing has been done to help her.

One of the first things that local Labour activists did , in our area, was to call round house to house , to celebrate their win Both my wife and I who are Labour supporters, though not party members, were utterly shocked by the rhetoric being expressed that “everyone knows that 90% of people on Benefits are scroungers.” Although we were assured by our MP , at the time, that this was not the Party view, it clearly was very near to the mark.

My wife has Very Severe Myalgic Encephalomyelitis (ME), that means that she is as functionally impaired as someone suffering from diabetes or heart failure or kidney disease, and as severely disabled as those with heart failure, late-stage AIDS, MS, patients undergoing chemotherapy, and COPD (chronic obstructive pulmonary disease. Recovery from severe ME is extremely rare and around 30% of cases are progressive and degenerative ; ME can be fatal.

My wife – and I, have been left to just “get on with it”, to cope with her never-ending intolerable agony , without hope of biomedical tests and treatment being provided by the NHS, partly because of the enormous influence of the Medical Insurance lobby upon Government .

The annual cost of ME to the UK economy is estimated at £ 3.5 billion and in the USA at $24 billion; it is clearly in the Insurance Company’s interest to deny that ME is real , (despite the WHO classification of ME as a neurological condition ICD 10 G93.3) since they have to pay out less on policies.


UNUM , arguably the world’s largest disability insurance company, has been directly involved in advising the UK government since at least 1994 when the Conservative government hired its Vice President to advise on 'claims management'.

Under New Labour, UNUM sponsored meetings at the 2003 and 2005 Labour Party conferences, titled 'The missing million: disability and pathways to work' and 'Welfare Reform: The way forward', respectively . Illness, UNUM argues, is a dysfunction of the person; the problem of illness is located in the individual’s beliefs and behaviour.
In 2001 UNUM launched New Beginnings , a public private partnership which was hugely influential in shaping Public Policy, especially in relation to the last government’s Department of Work and Pensions ‘s (DWP) Pathways to Work programme – designed to get disabled people back into work.
New Labour’s Welfare Reform Bill received Royal Assent on May 3rd 2007; leaving the ill terrified that it was a drive to force them off benefits into jobs they are too ill to perform. In our long experience, to be disabled or ill – or to be a full-time Carer, under the New Labour government, was to be poor, punished and penalized.
Particularly insidious has been the influence upon Government, of a small school of UK psychiatrists, with direct links to the medical insurance industry who have insinuated their view that the way to treat the sick and the unemployed is to given them Cognitive Behaviour Therapy, whilst pursuing an agenda to deny the very real physical causes of illness, particularly with regard to Myalgic Encephalomyelitis, which is a Neurological Disease.
In 1991 UK psychiatrists Michael Sharpe, Simon Wessely and Peter White were instrumental in the formulation of the “Oxford” case definition, which deliberately widened the definition of ME to include psychiatric disorders, specifically depressive disorders and anxiety disorders , and exclude those with neurological disorders : the very essence of ME. In other words they took over the name “ME” and used it for a totally different category of illness.
The Oxford Criteria are rightly despised and criticised with genuine reason, by ME patients and charities. Unfortunately under the New Labour administration, a multimillion pound award was made by the MRC (and DWP) to fund the non-biomedical PACE and FINE trials .
Despite attracting national and international criticism for allowing disparate fatigue conditions, for example post-traumatic stress disorder, depression and conditions that improve with exercise , to be represented as ME, these trails have wasted millions of pounds of pounds on tax payer money, that should have been spent on biomedical research for those who actually have neurological Myalgic Encephalomyelitis.
For my wife, who is genuinely, very severely physically ill, this has just added insult as well as denying her any hope of proper biomedical treatment or cure . It has guaranteed confusion about the very nature of her illness and has condemned her to endless suffering , prejudice, mistreatment and harassment.
The psychiatric influence upon the NICE ME/CFS Guidelines, has led to them being dismissed as unfit for purpose by virtually every ME Group in the land and by many of the medical colleges. Particularly dangerous about the NICE Guidelines is their proscription of the very biomedical tests that are needed to uncover the serious of this multi-system and severely disabling disease.


In 2006 a Parliamentary Inquiry , led by Labour MP Ian Gibson, called for a Standard’s Body investigation into the vested interests surrounding ME and also an investigation into the DWP It further urged NICE to recommend research into causation, therapeutic interventions and biomedical models of care; none of which has happened to date, to the shame of the Labour Party

I am writing to you, to urge you to rethink the whole attitude and approach to this dreadfully incapacitating and serious disease. I am asking Labour, under your leadership, to look with new eyes upon the influence of corporate vested interests upon public policy.

I am also urging you to personally take an interest in getting to know and understand the real issues concerning the denial of this neurological disease and the unbridled power of the psychiatric lobby, which is causing mayhem in the proper biomedical treatment of ME, throughout the country.

Until there is some honesty, within the Labour Party, about the deliberate abandonment of some of the most vulnerable people in the country and the corruption of vested interests in Government and Party Policy, then there will be no hope for my wife, whose experience of this disease was recently described , by a Consultant, as “torture” and a “ nightmare”.

We have always been impressed by your apparent honesty and integrity in government and feel you are the hope for the future of the Labour Party. Having always been a Labour supporter , prior to 1997, my wife felt bitterly betrayed by New Labour policies and attitudes and vowed to never vote for Labour again.

Perhaps you can change this ?

Here in Neverwhere..

Khaly has posted a terrific  new blog : http://cfsuntied.com/blog2/2010/09/25/neverwhere-an-homage-to-advocacy-in-the-trenches/

..which introduces the concept of "Neverwhere" :

"Neil Gaiman is one of my favorite authors. In his book “Neverwhere”, there is another whole world brewing beneath the city streets, in London Underground. People fall through the cracks and end up there, becoming forever invisible to those who walk and work and live their normal lives Aboveground. Life in Neverwhere ceases to follow the rules of normalcy, and getting through each day’s fresh serving of Hell is a cause for celebration.
So it is with this disease, which we call an invisible illness."
 
 I've posted a response on Khaly's blog.  Here though  I'd like to chart ten facts I've discovered , for myself,  about Neverwhere , this place where we struggle :

1. Everyone eventually walks away : Friends, Family, Church, Consultants.
2. No one really wants to know how bad things are.
3. No one can possibly know how bad things are, apart from the person with ME.
4. Nothing's changing : the psychiatric lobby grows increasingly powerful, the medical profession is profoundly uninterested, the State thoroughly compromised.
5. There is no one to help the most severely affected.
6. The value of ME Medical Conferences lies  in inverse proportion to their impact upon people's lives; there is an increasing unreal gulf between the science and the reality on the ground.
7. A lot of people have made a name for themselves on the Conference Circuit, they are doing okay, the psyches are doing okay, the Lightning Process practitioners are doing okay, ME  patients and carers remain invisible, ignored, negated.
8. There is not one major ME Group that is doing anything worth a dime,  for the severely affected.
9. You get hurt : you get attacked, slandered, insulted if you try , exhausted as you are, to make a difference.
10. One is terribly ALONE.
Like I say, this is my experience. I pray it is better where you are.

Briefing notes on the CDC Empirical Case Definition for CFS

Stonebird :
Briefing notes on the CDC Empirical Case Definition for CFS

(I spent a lot of time recently searching   for a concise overview of the CDC Criteria and couldn’t find one – here’s what I was trying to find out :)

The Centers for Disease Control and Prevention (CDC) ‘s empirical case definition for CFS involves assessment of symptoms, disability, and fatigue through the :

Symptom Inventory,
• the Medical Outcomes Survey Short-Form-36
• and the Multidimensional Fatigue Inventory . ( Jason et al 2008 )

Prepared by government bureaucrats, rather than by physicians . “ the CDC case definition according to Dr. Nancy Klimas is “rife with ambiguity. Symptoms are counted either as present or absent, without regard to severity or frequency." http://www.name-us.org/DefintionsPages/DefCFS.htm)

In 1988 after an outbreak at Incline Village Nevada, (Stein 2005) the CDC formed a committee that named the disorder “Chronic Fatigue Syndrome” and suggested criteria for a research definition (Holmes et al, 1988). These criteria were found clinically problematic and in 1994 the CDC revised their definition publishing what is commonly referred to as the “Fukuda criteria” (Fukuda et al, 1994) (Stein 2005), which selects less severely ill patients ; as Margaret Williams points out : the US Centres for Disease Control (CDC) produced yet more “guidelines” for the case definition of “CFS”, this time making sure that all physical signs were removed from the case definition. (“Signs” are observable by doctors, whilst “symptoms” are described by patients). Both Michael Sharpe and Simon Wessely were involved in this 1994 re- definition of “CFS”.

The Fukuda criteria require only one mandatory symptom: disabling fatigue of greater than 6 months duration.

In addition there must be at least 4 of:

• impaired memory/concentration
• sore throat, tender lymph nodes
• muscle pain
• multi-joint pain
• new headache,
• unrefreshing sleep
• post-exertional fatigue.

This definition lacks specificity because common symptoms such as autonomic and endocrine symptoms were not included. (Stein 2005)

The CDC’s earlier definitions (Holmes et al, 1988) and (Fukuda, 1994), both very similar to the Diagnostic and Statistical Manual of Mental Disorder's somatization disorder (The National Forum), have been widely criticised . Betty Dowsett , for example, stated they “ elevated tonsillitis, glandular enlargement and fatigue to unreal importance while overlooking the characteristic encephalitic features of the genuine illness” as well as inflating “ the possibility of a psychiatric diagnosis, leading to the incorporation of such a heterogeneous population of psychiatric and non-psychiatric causes “ that research groups were unable to compare results or evaluate treatment. "(Dowsett B)

The new definition, which “continues more than ever to propagate that ME/CFS abnormalities are theoretical and experimental “,(karinaxx 2010 ) appears to be even more vague than its predecessors . As Ezelius points out : “It is important to note that the new criteria is so much "loosened up" that it encompasses 2,5% of the general population instead of around 0,4% as with the earlier Fukuda definition 1994 criteria.” (Ezelius 2008)

Under the Symptom Inventory, for example, the overall level of symptoms is relatively low for patients with classic ME/CFS symptoms (the criterion would be met if an individual rated only 2 symptoms as occurring all the time, and one was of moderate and the other of severe severity). In addition, the 8 case definition symptoms were based on a time period comprising the last month compared to what is specified in the Fukuda et al. (1994) criteria, which states that: “There needs to be the concurrent occurrence of 4 or more of the following symptoms, and all must be persistent or recurrent during 6 or more months of the illness and not predate the fatigue.”

Under the Medical Outcomes Survey Short-Form-36 (SF 36) an individual may not have any reduction in key areas of physical functioning, and only impairment in role emotional areas (e.g., problems with work or other daily activities as a result of emotional problems), and then the person could meet disability criteria for CFS. ( Jason et al 2010).

Under the Multidimensional Fatigue Inventory severe fatigue is defined as greater than or equal to 13 on the MFI general fatigue or greater than or equal to 10 on the reduced activity, which means that it would be possible to meet the fatigue criterion without significant fatigue; i.e. with reduced activity alone. If a person indicated that the following two items were entirely true: “I get little done”, “I think I do very little in a day”; they would meet the fatigue criterion for the new CDC empirical case definition. (Najar, Porter, & Jason, 2007).

In summary “The CDC has made the "CFS" criteria so loose that it eliminates anyone with any neurological signs or symptoms yet ME is a neurological disease.”(The National Forum). The CDC Criteria uses polythetic criteria (i.e., patients are only required to have four out of a possible eight symptoms). Yet two of these eight symptoms (post-exertional malaise and memory/concentration problems) are an essential feature of this illness and the Fukuda et al. criteria do not require that these symptoms be present among all patients.


"In contrast, the Canadian clinical case definition does require specific ME/CFS symptoms such as post-exertional malaise and memory/concentration problems. "(Jason et al 2010)

“The Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy.

All of the exclusionary conditions included in the 1994 CDC Fukuda Criteria for CFS (1) are also listed as exclusions in the 2003 Canadian Consensus Criteria (2). The Canadian definition actually excludes more neurologic (and other medical) conditions than the Fukuda Criteria.

However, the 1994 CDC Fukuda Criteria for CFS specifically does not exclude anxiety disorders, somatoform disorders, nonpsychotic or melancholic depression, or neurasthenia, while the Canadian Consensus Criteria excludes primary psychiatric disorders. The 1994 CDC Fukuda Criteria for CFS also does not exclude “any condition, such as Lyme disease or syphillis, that was treated with definitive therapy before development of chronic symptoms,” while the Canadian Criteria does exclude “infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.” (ixchelkali 2010)

Ezelius (2010) comments that “for the already heterogeneous CFS-Fukuda set, it would be a benefit if one could exclude the ME-Ramsay (or ME/CFS-Canada) patients from the group, thus making it less heterogeneous. The excluded ME patients shall then form a separate group. “

Finally , it is hugely significant that the CDC itself declares “ that myalgic encephalomyelitis (ME) was defined in the 1950s as being distinct from CFS,” and recognizes “ that there is not a current consensus case definition for ME. “http://livingwithchronicfatiguesyndrome.wordpress.com/2010/09/16/the-cdc-responds/


..such a gift, surely for campaigners ??


Greg Crowhurst Sept 2010



Dowsett B A Rose by Any Other Name http://www.25megroup.org/Information/Medical/dowsett%27s/Rose%20by%20any%20other%20Name.htm


Ezelius 2008 , CFS is no longer CFS, and it was never ME me-cfs.se/dok/081205-cfs-no-longer-cfs.pdf


Ixchelkali (2010)
http://www.forums.aboutmecfs.org/entry.php?449-Regarding-the-CDC-XMRV-Study

Jason et al (2008) Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition Journal of DisabilityPolicy Studies Online : http://jdps.sagepub.com
http://dps.sagepub.com/cgi/content/abstract/1044207308325995v1

Jason et al (2010) Problems with the New CDC CFS Prevalence Estimateshttp://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

Jason L et al (2010) The Development of a Revised Canadian Myalgic
Encephalomyelitis-Chronic Fatigue Syndrome Case Definition
http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf


Karinaxx 2010 XMRV/ME/CFS How do we react to the recent events ? http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1399098

Najar, N., Porter, N., & Jason, L.A. (2007, Jan.). Evaluating the CDC new case definition. Poster presented at the International Association of Chronic Fatigue Syndrome, Ft. Lauderdale, Fl.


Stein E Psychiatric Treatment Guidelines sacfs.asn.au/download/guidelines_psychiatrists.pdf

The National Forum http://www.ncf-net.org/forum/summer-vol11-1.htm

Williams M Notes on the involvement of Wessely et al with the Insurance Industry and how they deal with ME/CFS claims http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm

Pseudo Science in the UK : re "Psychiatric misdiagnoses in patients with chronic fatigue syndrome".

Psuedo Science in the UK .A Stonebird response to

Peter White

Just ahead of the PACE trail report, Peter White has published a report : Psychiatric misdiagnoses in patients with chronic fatigue syndrome, which found that out of 135 participants at a PACE trail center , diagnosed with "CFS" according to the Oxford Criteria , 56% had a" co-morbid psychiatric diagnosis."

Greg Crowhurst, Sept 17th 2010

Permission to repost








Of these :

  • 31% had a major or minor depressive episode
  • 11% had dysthymia
  • 35% had an anxiety disorder
  • 2% had a an obsessive compulsive disorder
  • 6% had post-traumatic stress disorder
  • 8% had Social Phobia
  • 15% had a "specific phobia"

There were 14 assessing doctors :

  • 10 were psychiatrists (one consultant and nine trainees).
  • one was a consultant physician
  • three were general practitioners with a special interest in CFS.

Is this a surprise ? No !!


White’s report simply confirms how much The Oxford Criteria have nothing to do with ME.


Way back in 1999 Fred Friedberg, Clinical Assistant Professor, Department of Psychiatry and Behavioural Science, State University of New York, pointed out the differences between CBT trials in England and the US:


"Several studies of graded activity-orientated cognitive behavioural treatment for CFS, all conducted in England, have reported dramatic improvements in functioning and substantial reductions in symptomatology. On the other hand, cognitive behavioural intervention studies conducted in Australia and the United States have not found significant improvements in functioning or symptoms. Descriptive studies of CFS patients in England, the US and Australia suggest that the CFS population studied in England shows substantial similarities to depression, somatization or phobia patients, while the US and Australian research samples have been clearly distinguished from primary depression patients and more clearly resemble fatiguing neurological illnesses. " (JCFS 1999:5: 3-4:149-159).


(Hooper 2010 Biomedical Evidence Summaries) )



The Oxford criteria upon which the PACE and FINE trials were based , were drawn up by psychiatrists in 1990 and broaden the 1988 Holmes et al CFS criteria to include all those with psychiatric “chronic fatigue" , while specifically excluding those with neurological disorders. The Oxford criteria state: "The following guidelines were agreed. There are no clinical signs characteristic of the condition. Psychiatric disorders (including depressive illness, anxiety disorders and hyperventilation syndrome) are not necessarily reasons for exclusion". (Williams 2004)



As Margaret Williams (2004) points out : "This opens the door to the world and his wife if they feel chronically tired for longer than six months without any medically determined cause ."



Used only by a small group of English psychiatrists (the Wessely-school) and by the university of Nijmegen, Netherlands (Neilson 2002), the Oxford criteria , by definition, exclude all those with authentic Ramsay-defined ME from study .


By the time the MRC announced that the Oxford criteria were to be used as the criteria for the PACE/FINE trial, in May 2003, they had been well and truly superseded


Research, for example, published in 2002 found that in terms of 'who has ICD ME/CFS' ? :

  1. CDC1998 criteria 80% plus may have ME/ICD-CFS
  2. CDC1994 criteria 40% may have ME/ICD-CFS
  3. 'Oxford' criteria 10% may have ME/ICD-CFS

(Neilson 2002)


It is particularly significant how US researchers noted in 1999 that : “ "neither the 1988 nor the 1994 case definition identifies the sickest patients because information about symptom severity is not required to make a diagnosis of CFS” ( Hill et al 1999)


In 2004 Lord Warner, confirmed that the UK accepted that ME/CFS is a neurological disease , listed as such by the World Health Organisation (WHO) under ICD-10 G93.3, yet the PACE/FINE trials still set out to study only psychosocial management regimes and treatments using as a set of criteria "ICD10: 48.0" : "Mental and Behavioural Disorders"; subtitled "Other Neurotic Disorders" (Neilson 2002)


Patients wrote to the MRC in 2004 pointing out how the Canadian Clinical Case Definition , "was produced by an Expert Medical Consensus Panel of eleven physicians who between them treated/diagnosed over 20,000 ME/CFS sufferers worldwide, enabling medical practitioners to more easily distinguish ME/CFS, with its pathological fatigue, from ordinary fatigue and other fatiguing illnesses." (Kennedy 2004) Carruthers himself, lead author of the Canadian Criteria, wrote to the MRC confirming that there is no valid reason why the MRC should not use those Guidelines in its studies of ME/CFS (Williams 2004)



Carruthers had previously made it clear that : "the use of these Oxford criteria for selecting ME/CFS patients is a gross violation to the "International Classification of Diseases" (ICD) of the World Health Organization (WHO), and therefore at the same time a serious case of discrimination.""Journal of Chronic Fatigue Syndrome 11(1), 2003.


A DePaul University (US) study found that patients diagnosed according to the Canadian criteria had more variables that significantly differentiated them statistically from the psychiatric comparison group, and that the Canadian criteria selected cases with less psychiatric co-morbidity and more physical impairment (JCFS 2004:12(1):37-52) but in its Clinical Guideline CG53 on “CFS/ME”, NICE recommended that the Canadian Criteria should not be used in the UK. (Hooper 2010 Biomedical Evidence Summaries http://www.stonebird.co.uk/hooper.html)


Given that they specifically exclude people with ME from study, there was no compelling reason, whatsoever, to have based the PACE and FINE trial upon the Oxford criteria; apart from a serious case of discrimination.(cf Neilson 2002)


As Hooper (2010) points out the MRC's PACE/FINE trials:


".. seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be recruited and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded."


Is Peter White really not aware, by now, that :


ME/CFS and Chronic Fatigue are not the same.


ME is formally classified as a neurological disorder in the International Classification of Diseases (ICD10:G 93.3; WHO 1992), and the ICD separately classifies fatigue syndromes as a behavioural (psychiatric) disorder (ICD 10:F 48) Researchers have failed to distinguish between ME and CFS and/or between subgroups. (Anon 2001) As Carruthers & van de Sande (2005)point out: “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.



At a Press Briefing held on 3rd November 2006 by the US Centres for Disease Control to announce its ME/CFS awareness campaign, Anthony Komaroff, Professor of Medicine, Harvard Medical School, said:



" It’s a pleasure to be here today with several people who have dedicated successfully a big part of their lives to trying to understand and get recognition for this terrible illness.



"It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which was waged for 20 years, should now be over.



"Brain imaging studies…have shown inflammation, reduced blood flow and impaired cellular function in different locations of the brain…(and) they change a person’s life.



&quuot;Today we have powerful new research technologies and tools we didn’t have even 20 years ago, and they are being put to good use by laboratories all over the world".


(Hooper 2010 Biomedical Evidence Summaries) )


ME/CFS is not a somatoform disorder.



According to Nancy Klimas : "there’s evidence that the patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis." (Hooper 2010 Biomedical Evidence Summaries) )



The documented biochemical, metabolic, vascular, neurological and muscle abnormalities in ME/CFS patients (Williams 2004) have led to the WHO classification of ME/CFS as a neurological illness. The UK Department of Health and the WHO Collaborating Centre at the Institute of Psychiatry have agreed that ME/CFS is undoubtedly neurological. There is no published evidence whatsoever, as opposed to opinion, that ME (as distinct from chronic fatigue) is a psychiatric disorder. (Williams 2004).



Unlike somatisation disorder, M.E. is not ‘medically unexplained.’ M.E. is a multi-system disease with many organ and bodily systems affected, producing a myriad of symptoms [and] many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research. (ME Society of America)



ME/CFS is not “cured” by Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET).


It is very well known that CBT and GET are potentially harmful to anyone with neurological ME.



The Chief Medical Officer (2002) himself warned that exercise-based regimes advocated for less severely affected patients tend not to have been studied among those most severely affected. Shepherd (2001) warns that as much care should be taken in prescribing exercise as in prescribing pharmaceuticals for ME/CFS patients do not respond to exercise in a manner that is expected of healthy people (Streeten et al 2001)



As Neil Abbot points out : "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".



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.



It is not "fatigue" or "tiredness" that is the one essential characteristic of ME/CFS but central nervous system (CNS) dysfunction (Bassett 2006). As leading M.E. expert Dr Byron Hyde MD (2003) explains: " The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological CNS changes: SPECT, xenon SPECT, PET, and neuropsychological testing.7quot;' Drs Cheney and Peterson describe ME/CFS as " A global disablement, nearly comparable to paralysis." (Johnson 1996) Dowsett comments that "Fatigue" is the wrong word. Fatigue is a silly word." (Colby 1996) Dr David Bell M.D (1995) describes the word "fatigue" as: "A very inappropriate term for what patients experience. It’s not really fatigue at all, which is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness. "



In 2003 The Canadian Expert Consensus Panel published its medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome, making it compulsory that , unlike the Oxford Criteria, in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria. (Carruthers et al 2003).



ME/CFS is not depression.


Research, for example, shows that CFS patients show more alpha electroencephalographic activity during non-REM sleep, but this is not seen in dysthymic or major depressive disorder (Whelton, Salit, & Moldofsky, 1992). Cognitive changes are also not due to psychiatric co-morbidity (Vercoulen et al 1998 Backwood et al 1998) SPECT cerebral blood flow studies of persons with CFS show decreased blood flow in several key areas such as frontal lobes and brain stem which are different from both healthy controls (Barnden et al, 2001Costa et al, 1995) and depressed subjects (Schwartz et al, 1994; Fischler et al, 1996). PET scan studies have reached similar conclusions (Tirelli et al, 1998. Bakheit, Behan, Dinan, Gray, and O'Keane 1992) found up-regulation of hypothalamic 5-hydroxytryptamine receptors in patients with postviral fatigue syndrome but not in those with primary depression.


The predominant psychiatric paradigm, still seems to be that patients have medically unexplained chronic fatigue, and that their problems derive from deconditioning consequent on physical inactivity at best, and simple avoidance behaviour (underpinned by abnormal illness beliefs) at worst. (Scottish Cross Party Submission 2005). Yet : " no proponent of a psychological aetiology has ever hinted at the exact psychological mechanism"(Walker 2003)


What happens in ME/CFS, however, has little to do with cardiovascular deconditioning (Spence & Stewart 2004) and is more related to chronic orthostatic intolerance/postural tachycardia syndrome (POTS), caused by vascular dysfunction. Goudsmit (2005) points out that studies have shown that most patients do not avoid minimal activity and that lack of fitness is not related to the fatigue in CFS (Bazelmans et al 2001 ) . Moreover, deconditioning cannot explain the documented delay between the end of exertion and the exacerbation of symptoms, the upregulated immune system etc. (De Merlier et al 2000)




In 1996, US neurologist Dr Benjamin Natelson et al evaluated patients with ME/CFS for a placebo effect in a randomised, double blind, controlled trial and found no evidence that ME/CFS is an illness due to patients being overly suggestible or that ME/CFS is a psychogenic illness, and that: “No clear effect of any treatment has ever been demonstrated in this devastating illness” (Psychopharmacology 1996:124:226-230).



In 1996, Natelson et al examined the rates of somatisation disorder (SD) in ME/CFS relative to other fatiguing illnesses and found that the diagnosis of SD is extremely problematic in terms of its validity because it involves a series of judgments that can be arbitrary and subjective: “(ME)CFS can be viewed as an organic disease involving many organ systems or as an undifferentiated somatoform disorder. A diagnosis of somatoform disorder may be so arbitrary as to be rendered meaningless in illnesses such as (ME)CFS” (Psychosom Med 1996:58(1):50-57).


(Hooper 2010 Biomedical Evidence Summaries) )



Peter White's paper , based upon a cohort defined by the Oxford Criteria, which as White himself acknowledges is predominantly people with menatl health issues, negates any justification for CBT and GET for neurological ME. At best it belongs in the realm of what psychiatrist Alan Gurwitt in 2002, termed " Pseudo-science" in the UK":


"I have often been embarrassed by and angry at many of my colleagues who fall in line with self-declared ‘experts’ who see somatisation everywhere. Ever since the mid-1980s there have been ‘researchers’ with an uncanny knack at cornering research funds because of their already-formed biases that are in synch with the biases of the funding government organisations (and who) indicate that CBT and graded exercise will do the therapeutic job, thus implying a major psychological causative factor. I have noticed the following deficits in their work, their thinking, their word choices and their methods"

(Hooper 2010 Biomedical Evidence Summaries) )




When is the UK finally going to to start acknowledging the difference between those who have the WHO -classified nuerological disease called Myalgic Encephalomyeltits and those who have a chronic fatigue /mental health disorder , who are being wrongly labelled as having ME - and stop pretending that one is the other ? Both groups are in need of help, but it is unfair to both to put them together and pretend they have the same illness; in the case of myalgic encephalomyelitis it is profoundly dangerous to keep on promoting the myth that ME is a mental health disorder.





As far as ME goes, the PACE trial is a ghastly waste of money As`Linda Crowhurst (2010) points out :



" ME is a WHO classified neurological disease with multi- system dysfunction and the people who have it, like me, are extremely physically ill. It would be like saying " you have cancer or AIDS, let's treat you by changing your thoughts and getting you to exercise". That's just not going to be effective.



"Perhaps now the MRC will stop wasting millions of pounds like this on psychological studies when biomedical research, teats and treatments are so greatly needed for desperately ill ME patients across the country. ""


( Crowhurst L 2010) It Should have Been Obvious


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The fat lady's singing alright

The fat lady's singing alright
Greg Crowhurst 8th Sept 2010

.... who could have envisaged Margaret Williams ever writing this  : "It may be coincidence, but a video is currently circulating on the internet featuring Francis Collins, Director of the NIH, singing “The Times They Are A-Changin’ “ on Capitol Hill (Rock Stars of Science: http://www.youtube.com/watch?v=2SNHDlKYSt0&forumid=331851 )." 

So Near yet So far : http://www.meactionuk.org.uk/So-near-yet-so-far.htm

Such extraordinary times !! That  BBC story yesterday ,  confirming that the body is fighting infection in ME :

http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884, 

then the CDC advertising for a new director to replace Reeves.  Harvey Alter's article -   the man who virtually discovered Hep C, finally being published in the PNAS.

 and what with  Jonathan Stoye, National Institute for Medical Research, UK   , speaking at the first International XMRV Conference  .....

hey, the fat lady's singing alright today, anyone can see that.

My concern is where do we go from here ....

For too long we, as an ME Community have been deeply divided ; that has been no coincidence : Divide and Conquer has always been used by the powerful, to oppress. Such oppression : 17 years of utter pain and agony for my wife and counting.... I find this lesson from the AIDS struggle very instructive :

"Oppressed and stigmatized communities are not only marginalized from the centers of power in society, but we are typically isolated from each other. We're often distrustful of each other because we haven't had the experience of working together toward common goals and because of the psychological and social consequences of oppression -- things like racism, sexism, and homophobia. We also often feel that we need to compete and sometimes fight with each other for a share of already scarce resources to meet our community's needs. As a larger community, it's important that we prioritize the most impacted groups so that everyone's needs are met. Conflict can sometimes emerge from this important dialogue, and that may be necessary for us to build unity based on honesty and trust. But it is not the same thing as allowing our adversaries to divide us, which is always harmful."
 
http://www.thebody.com/content/esp/art44132.html 

I have said before, I don't think we appreciate enough the power of the medical insurance lobby to shrug off whatever we throw at them. How they have got away with the nonsense over ME being a syndrome requiring behavior modification , despite all the medical evidence to the contrary is incredible. 

These are truly momentous times, history is finally  on our side and things are moving rapidly - however , like the AIDS community, we  have to become  much , much  more effective at taking a stand, at  fighting back. 

It's not over yet :

For the fat lady's singing :

"There's a battle outside ragin'.
It'll soon shake your windows
And rattle your walls
For the times they are a-changin'."


Bob Dylan

 

























Grrr !!!

So wound up, literally, was I by that Press Statement from the Science Media Center, which Jean Harrison posted on CoCure this morning , that I simply had to do something to contain  myself....

So I got out my bike.

While I was standing on the street getting myself sorted out : IPod, helmet, goves, glasses, a woosh of lycra sped past: a multicoloured  swarm of cyclists -  and dissapeared.

Anyway I jumped on and set off peddling furiously : "PNAS...Sceince Media Centre ..grrr...."

The woosh  of lycra appeared on the  horizon....

"Grrr...Science Media Centre,,,such a blatant  outrage.........!

Suddenly the other cyclists were just ahead of me , cycling up what passes for a steep hill here in Norfolk.

"Grr..grrr......."

I was in the centre of them, head down, fuming, and then way out in front

I had  caught up and passed the woosh, all less than half my age,,,,,, on a hill !!!

Off I sped like a dart and came back eventually , still peddling furiously.

I will never know if I set a world record for speed this morning or not !!!! (I think it's just possible ...)

 Wessely's sure helping to keep me fit....!!

Why Norwich ?

Stonebird :
Why Norwich ?

Greg Crowhurst Sept 3rd 2010
(Permission to Repost)

“The challenge facing us is to learn to perceive and ride the waves of change or else risk sinking in an over-populated pool of confused, dispirited and frantic  people.” Greg Crowhurst ( Community Living Magazine 1993)

It is a fact of life that the only ones who get anything done are those who have the courage to get up and make it happen. For five years we have been fighting the fight of our life here in Norfolk.

Me, I am fighting for my wife who is so seriously ill.

I have tried to make myself look as presentable as possible and with no money and only my convictions to guide me, I am one of the few in this country, it seems,  who has actually got up,  opened the front door and gone and sat in board and meeting rooms , arguing, against all the odds, for a biomedical ME service.

I even led a delegation of ME patients , carers and Professor Malcolm Hooper once,   into a meeting where  the Chief Executive had refused to see us.

I have  met countless times with MPs, other activists and written to the press.

I have  lived and breathed and willed and pushed and am still pursuing  this fight through the formal complaint process. I even travelled once  to South  London and met two biomedical consultants with Norfolk’s Head of Commissioning.

I am one of those who , at tremendous personal cost , including broken friendships and a marriage pushed to the edge of sanity,  finally  got NHS Norfolk to admit that a biomedical ME service and  a biomedical consultant is necessary .

I have  been pushed to my  physical and mental limits doing this.

So yes, this is partly  why InME’s Center is going to be based in Norwich. How many other PCT’s do you know support a biomedical approach to ME ?

But if I have been pushed to my limits,  my God,  that is nothing compared to IiME’s efforts. Never have I known such commitment and courage. Determination ? I never knew the meaning of the word before.

Wow, the power of their vision, wow their  drive to make this center  happen, wow their total uncompromising  dedication to people with ME, wow their capacity to cut through every obstacle with a laser-like belief that you know, this is easy  : no one can argue that with five international conferences under their belt that IiME don’t know what they are talking about, when they say we know what to do.

Again, all of this is all happening  at incalculable personal  cost.

Predictably though, there are those in the ME community who will smugly  knock out something or other on the internet  asking  :” Oh : have you done this or that ? Oh : have you consulted him or her ? Oh : have you considered here or there ? “ in a typical  self-satisfied, destructive  way.

 It is exactly this attitude  that resulted in the  throwing away , the utter rubbishing of of  best chance the ME Community ever had : the Gibson Inquiry .

Now I’ve played my part, IiME are playing theirs here in Norfolk , but the giant among us, the power and the engine is Ian Gibson. Shame on anyone who dares question this man’s extraordinary personal commitment to people with ME , who have "concerns", hell : even after all the vitriol, the slander that he has endured, he is in there,  fighting on the street  with us. This is a successful grassroots struggle in every meaning of the term.

We are busy  making history here.

The only question is : why is this not happening everywhere ? What has everyone else been doing ?