RnaseL Enzyme Dysfunction Disorder, or R.E.D.D. by Mary M. Schweitzer
A counter-attack on the increasing evidence to the physicality of CFS was mounted (so far successfully) in the UK by Drs. Wessely and Sharpe, and in Australia by Drs. Lloyd and Hickie. The disease had been recognized in the U.K. by the name M.E., for Myalgic Encephalomyelitis (roughly translating into brain inflammation accompanied by pain), for nearly half a century, but the CDC had ignored that history in choosing to support the decision-by-committee name "Chronic Fatigue Syndrome" invented in 1988. When Stephen Straus went to the U.K. to encourage the use of the name CFS internationally, the psychiatric community jumped at the chance to prove the longstanding conviction of a minority that M.E. was really psychosomatic. Specifically, they argued it was an abnormal response to a long-term viral illness: the patient had "learned" to be sick, and now had to "unlearn" it through cognitive behavior therapy (CBT). But the U.K. researchers refused to use the CDC's restrictive diagnostic criteria -- adopting instead one that focused on the fatigue and ignored the physical symptoms.
The result was that the British version of CFS (whether the "Oxford" or "Royal Colleges" definition), applied to roughly 5 percent of the population (in contrast to the demographics of both M.E. and CDC-CFS, which most researchers felt affected 0.25% of the populace.) The consequences of this expanded definition for research were immediate and dramatic. When Sharpe wrote that "CBT" and "graded exercise" were statistically significant in improving the condition of people with CFS, did it make a difference that 95 percent of his sample would not have been defined as having M.E. in the UK, or as having CFS in the United States? Of course -- and yet that was the research that hit the popular press. Lloyd and Hickie's perspective led to the actual dismissal by Australian doctors that persons with CFS who were still sick two years later were sick at all -- by definition they only thought they were.
According to the CDC in the U.S., only 45 percent of patients with CFS have achieved remission five years after onset of the disease; ten years after onset of the disease 45 percent of the original patients remained significantly disabled. CHROME, a long term study of patients with the most severe forms of M.E., found similar results -- and that there was an entirely class of patients who simply continued to deteriorate over time. How could the CDC and the CHROME evidence be reconciled with the Lloyd-Hickie thesis that illness after two years was due to psychological maladjustment? It could not. Yet Lloyd and Hickie were as active in the AACFS as Wessely and Sharpe.
A Call for Help - By Stephen Ralph (on the ‘fatigue treatment’ clinics in the UK)
We cannot let these people get away with this.
We cannot let these clinics be hijacked by the mindset of psychiatry who plan to spread their word and their beliefs through these clinics to the families of ME sufferers and the wider communities who will go to these clinics for advice as will your GP's and the media once these clinics have been set up with staff who will be educated by such adverts and the people who wrote them along with their managers who are all forcing through this mental health agenda. I think this whole situation is totally appalling.
Sharpe Editorial Comment by Stephen Ralph
The "Wessely School" have attempted to convince their peers via a worldwide network of likeminded colleagues that ME/CFS is a "disorder" that can be treated and cured by CBT and Graded Exercise - claiming that ME/CFS is predominantly the cause of faulty illness beliefs and muscle deconditioning with only minor disturbances to the neuro-endocrine system to account for any discrete biological abnormality. This is not surprising... this is the ideology of psychiatry - to formulate a psychological construct for symptoms they claim are "medically unexplained" or indeed "unexplainable".
Further more, thanks to the appalling state of the peer review system and the inherent bias of the BMJ/Lancet along with other journals overseas, much of this systematically biased research now increasingly described as "poorly carried out" has been published and pushed upon the medical establishment and the media in preference to *anything* that contradicts the views of the psychiatrists themselves. After all, if you say something often enough and in enough places - people start to believe it - to believe it to be true and as a result it becomes fact.
People with non-specific Fatigue Syndrome should by all means be seen by psychiatrists as primary care specialists... this is the correct speciality for treating mental and behavioural disorders.
(To the novice reader, any confusion over this situation has been created by the profession of psychiatry for the advantage of psychiatry.)
House of Lords Debate 16 April 2002 7.27 p.m. by the Countess of Mar
Professor Wessely seems to have taken it upon himself to reclassify ME as a mental disorder in the WHO Guide to Mental Health in Primary Care in his capacity as a member of the UK WHO Collaborating Centre for Research and Training for Mental Health. He has disingenuously amalgamated his own definition of chronic fatigue syndrome with ME by stating that ME may be referred to as CFS and is thus, he claims, a mental disorder.
The report concedes that there is huge confusion surrounding terminology. In reality it is simple. In 1992, the WHO included the term CFS as one by which ME is sometimes known, and indeed many international researchers now refer to ME as CFS. The patients whom they are studying resemble those with neurological illness. There is a long established acceptance that such patients are severely physically ill. However, since 1991, Wessely and his colleagues have been responsible for producing their own criteria for CFS, known as the Oxford criteria. They dropped all reference to physical signs. Physical symptoms suddenly became behavioural in origin as opposed to organic.
The scientific evidence is that, at best, a total of between 22 and 28 people with CFS and no psychiatric illness have derived limited benefit from CBT—nine of them in just two trials. None of the trials studied those with ME who were severely affected or children. Professor Friedberg of State University, New York, says that, for those CFS individuals who do not have psychologically mediated reductions in inactivity, such a directed approach as CBT would be inappropriate and counterproductive.
Is the Minister happy to rely on such manipulation of the scientific evidence as appears in the report? Does he endorse management recommendations for patients with ME who do not have psychiatric illness that have been extrapolated from findings of studies on patients with a psychiatric diagnosis?
BBC Panorama 'Sick and Tired'.
The investigative Panorama TV programme reveals the results of an exclusively commissioned survey which shows children are being pressurised into accepting psychological treatment.
Risks associated with exercise programmes need to be recognised and investigated further
When referring to cognitive behaviour therapy and graded exercise therapy, they mention findings which they claim show that "the benefits ... outweigh the risks in ambulant adult patients". I think the risks involved in somebody with ME doing graded exercise programmes need to be investigated further. Is it worth a percentage of patients becoming severely (and often chronically) affected following graded exercise therapy programmes (2) so that some other patients, who may never have had strictly-defined ME but some fatigue syndrome which does not have an abnormal physiological response to exercise, can benefit?
WARNING: UK Prime Minister’s Strategy Unit on Mental Health Eileen Marshall and Margaret Williams, 26th May 2005
It remains beyond comprehension how any "Strategy Unit", especially one at Prime Ministerial level, feels able to ignore the published evidence about the organic basis of ME/ICD-CFS that has been repeatedly put before the Prime Minister, Ministers of State, the Chief Medical Officer, the Chief Executive Officer of the Medical Research Council and the Lord Chief Justice, to name but a few to whom convincing evidence has been sent. That evidence includes proof of an organic pathoaetiology causing disruption of virtually all the major systems of the body, most notably the neurological, immunological, cardiovascular, respiratory, musculoskeletal and gastrointestinal systems, yet the State officials (and the psychiatrists who advise them) who determine what is or is not a "mental health" disorder seem determined to lump together all states of so-called medically unexplained "chronic fatigue" without differentiation and to impose the same management regime of graded exercise upon one and all.
Patronising promises that this regime will be "gentle" and will let the patient set the pace and that they can withdraw at any time are only for the gullible, because if patients do withdraw, they will automatically lose their right to state benefit and there is already evidence that in an existing clinic, CBT is being used to convince patients that their pain, insomnia, gut problems and allergies are simply somatisation and that these symptoms will resolve once a correct mode of thinking is achieved. There is also a worrying obsession with the patients’ sex lives. Patients are told that using a support group is a retrograde step and are advised against it, and there is a refusal to refer people to a pain clinic or to offer any care other than anti-depressants. Is this is just what the Prime Minister’s Strategy Unit hoped for?
RiME Latest - 27th January 2005
The APPG Chair is now supporting the very psychiatric psychological modes of treatment which he condemned in 1999. He now says that GE and CBT do help people with ME (letter to severely affected person with ME Dec. 2003 , letter to relative of ME patient Aug. 2003 ): his source - The York Review:
The York Review did virtually all the work re. the CMO Report on 'CFS/ME' (The APPG Chair, incidentally, endorses the latter report and now uses the term 'CFS/ME'). The Review drew heavily on the work of Wessely, ('much of the database was provided by.. Wessely' - CMO, Sept. 1999) and like-minded colleagues and reported promising results for GE and CBT. Studies which challenged the role of GE and CBT were excluded; and there was not one study on severely affected people with ME.
Many of the references in The Royal Colleges Report which Mr Wright condemned 1999, written or co-authored by Wessely, correspond to those in the York Review which he cites; so do other references, written or co-authored by members of the 'Wessely School', eg Sharpe and Chalder.
Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial [Reply to Gijs Bleijenberg and Stulemeijer et al., BMJ 330 (7481) 14. by Steven Du Pre]
I would like to point out the inaccuracies inherent in the following statement by Professor Bleijenberg and his colleagues: "A characteristic belief of patients with chronic fatigue syndrome, especially in case of passive patients, is that fatigue is made worse by exercise. This cognition, although functional in the first phase of the condition, is dysfunctional in the longer term and maintains activity avoidance and symptoms."
This statement exhibits a misunderstanding of the disease Myalgic Encephalomyelitis/CFS as a recoverable, psychological condition. The exact opposite is true about this disease---it is a non-recoverable, physically debilitating disease (the largest study done by Dr. Leonard Jason shows a 4-8% recovery rate). And the disorder is clearly not fatigue, but is more accurately represented as muscle myopathy, reduced oxidative muscle metabolism, and cardiac insufficiency (see references below which substantiate this assertion).
Bleijenberg and his colleagues are bypassing solid, substantive studies which counter their statements about Myalgic Encephalomyelitis/CFS. The end result of this is undue suffering in the patient community and an unjust portrayal which undermines the reality of the seriousness of this neuroimmune disease which has been correctly classified in the ICD since 1969 as a neurological disorder, which is worsened by aerobic exercise as shown clearly in the brain SPECT scan evidencein Dr. Byron Hyde's book, The Clinical and Scientific Basis for Myalgic Encephalomyelitis/CFS.
A systematic evaluation of the quality of meta-analyses in the critical care literature From Jerry Campbell
I believe that this article may be of general interest, given that there is at least one meta-analysis that supports CBT and graded exercise in CFS. The results of this paper suggest that over half of published meta-analyses have major flaws.
Campaigning for Research into Myalgic Encephalomyelitis – 2004
What follows are the first three pages of RiME's Autumn 2004 Newsletter. We don't believe that the new NHS Centres will be in the interests of the vast majority with ME and urge people to protest now. Nor do we believe the prospective PACE and FINE Trials will benefit the vast majority who are severely affected with ME and urge people to make their protests now. Those who hold power at Westminster are doing all they can to close the door on genuine ME activists with legitimate concerns and grievances.
25% ME Group Response to the CFS/ME Research Advisory Group’s Draft Report "CFS/ME Research Strategy (Draft Document for Public Consultation)"
We do not believe that GET, CBT or even pacing will stop the disease! We should be seriously investigating the pathophysiological processes that are causing people to deteriorate.
The only point we would make regarding Para 157 would be that there is strong evidence from patient-reporting groups and documentation from various sources confirming that GET does make patients with Myalgic Encephalomyelitis worse (but this does not necessarily apply to patients with CFS and other Functional Somatic Syndromes). Relapses in patients with ME can last for months, years, or for the lifetime of the patient. For patients whose lives are already devastated by ME, the additional level of suffering caused by this form of ‘treatment’ can often be intolerable.
Colin Blakemore on BBC Radio 5 Live by Stephen Ralph
The current agenda of drowning is all in Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) will neither cure or rehabilitate people who are chronically ill with Myalgic Encephalomyelitis.
It has already been pointed out many many times in patient surveys carried out by ME charities including one by Action for ME and another by the 25% ME Group that people with ME who have already tried CBT and GET either have be harmed by such regimes or have found little or no use for such "treatments".
Until last year, many millions of pounds had already been spent on studies relating to CBT and GET on people with Chronic Fatigue Syndrome.
Such studies always had mixed outcomes because the patient groups utilised for such studies were (by virtue of the clinical inclusion criteria used) a heterogeneous group of patients.
Last year over £8million was given to the same psychiatrists who are now carrying out yet more of the same studies using the same clinical criteria which will thus produce yet more mixed research results and leave many thousands of people with ME bereft of a cure or any sort of functional recovery.
Many see the current agenda as a process by which career psychiatrists can earn moneys from MRC handouts - cornering the market in ME/CFS treatments so that they can in fact become the default clinical specialist for people with ME.
In effect, ME/CFS will become a psychiatric disorder; treated by default and exclusively in a psychiatric setting. This is of course totally supported by the UK's biggest ME charities Action for ME, the ME Association and AYME. The bottom line is.... when those with chronic tiredness have been cured by CBT and GET there will be a core group of very sick and disabled people with all the signs and symptoms of Myalgic Encephalomyelitis who will have gained NOTHING from the process forced through in the UK over the last 5 years.
Submission to the Working Group: Draft Clinical Practice Guidelines on the Evaluation of Prolonged Fatigue and the Diagnosis and Management of Chronic Fatigue Syndrome A Review of Draft Version 1 Jim Oakley January 1998
The guidelines present CBT and graded aerobic exercise therapy almost as a panacea for CFS. General practitioners who adopt these approaches, and who are seduced by the upbeat mood of this section of the guidelines (and who do not refer to the original references), may tend to push their CFS patients to do more if they are not improving during and after treatment. This could be highly detrimental to some people with CFS.
Dr. Les Simpson – Rethinking the Pathogenesis of CFIDS
By Craig Maupin at http:///www.cfidsreport.com
Simpson continues, "I found that ME blood filtered poorly - implying that they had a problem with blood flow, particularly at capillary level. In a paper published by New Jersey Medicine, I suggested that ME people might have the anatomical feature of smaller than usual capillary diameters. Such a proposal would help to explain the great variety and variation in distribution of the symptoms reported by ME people."
Other models for the illness have struggled to fit the distinct features of CFIDS, such as exertion intolerance and circulatory dysfunction. Simpson feels impaired blood flow offers a unifying thesis that can explain many of these distinct symptoms. He vividly recalls the unique response to exercise of a patient referred to him. "Two scans were done [SPECT scans] -- pre and post exercise. While the pre-exercise scan showed reduced cerebral blood flow, this was much worse in the post-exercise scan. At that time, the effects of physical activity on red cell shape had not been reported. This shows the extent of ignoring blood rheology factors as determinants of blood flow."
The Harm suffered by many people because of a psychiatric diagnosis is a well-kept secret
Quote: People--even many psychotherapists--often assume that psychiatric diagnosis is a science. The fact is, however, that very little solid science goes into the creation of categories of psychiatric diagnosis or the application of them to patients. When science is absent, every conceivable kind of bias can enter in to decisions about who is diagnosed as mentally ill and which label they are given.
An interview with Prof. Tony Pinching [1]
An interview with Prof. Tony Pinching [2]
I spoke to Prof. Pinching in 1998, when I was trying to get to see an ME specialist, privately. I needed to get a private referral because my GP would only send me to a psychiatrist, on the basis that my illness was precipitated/caused by a psychological trauma about which I was supposed to be in "denial" because I have "repressed" the memory of that event from my conscious mind. My GP, however, wanted me to name the trauma so he could arrange the appropriate "help" for me from a psychiatrist. My GP at one time thought that I may have Hysterical Conversion Disorder. There was, and indeed is, no such trauma, but he would not believe that. If I went to his psychiatrist, then it would be on the basis of my confession to a trauma I did not have. I would be damned by that confession. If I had refused to play the "name the trauma game" with my GP, then he would simply have condemned me for not cooperating with him and would sever all support and assistance, including his refusal to answer letters from all and sundry, including local authority Councillors and even my MP.
PRiME - Sending Us Around in Circles Stephen Ralph 19th June 2005
I understand that ever since the last issue of the WHO International Classification of Diseases was published, Simon Wessely and his colleagues currently pursuing the PACE and FINE trials - paid for by the MRC - have also been attempting to revise the next World Health Organisation International Classification of Diseases to include a new section covering Somatoform Disorders.
The aim of this plan is to formally reclassify "CFS/ME" as a psychiatric somatoform disorder along with other conditions that the psychiatrists deem to be equal or the same including conditions such as Fibromyalgia.
This is why the PACE trial - set up by the MRC - will not distinguish the difference between medical conditions such as what it has chosen to call the heterogeneously grouped disorder "CFS/ME" and Fibromyalgia when it selected patients. This is why the MRC will not follow the view that ICD ME/CFS/PVFS is a neurological disease despite the fact that the Department of Health has to respect the WHO ICD-10 classification that specifically states the opposite.
The MRC are ignoring the rules to promote their own beliefs.
