Brief comments on the DWP proposed entry on "CFS/ME" (version 8 of March 2006) by Margaret Williams, 26th March 2006
Para 1: In the "Definition", many key symptoms and features of true ME/CFS are again omitted: since the Guidance is not limited to mild forms of the disorder (but covers the entire spectrum of severity), why have such symptoms as cardiac insufficiency, neuromuscular incoordination, respiratory dysfunction, vertigo /balance problems, inability to stand unsupported for more than a few moments, frequency of micturition / nocturia, pancreatic insufficiency, chest pain, parasympathetic enteropathy etc been omitted? This would seem to amount to deliberate disinformation.
Para 2: again, there is obfuscation about which disorder is being discussed. It is untrue that "most authorities consider the condition as CFS/ME"; the people who use that term are Wessely School adherents and UK Government bodies whom they have influenced. The term was coined by Wessely himself, who wrote in the BMJ: "It may seem that adopting the lay label (of ME) reinforces the perceived disability. A compromise strategy is ‘ constructive labelling’: it would mean treating CFS as a legitimate illness while gradually expanding understanding of the condition to incorporate the psychological and social dimensions. The recent adoption by the UK Medical Research Council and the chief medical officer’s report of the term CFS/ME reflects such a compromise" (BMJ 2003:326:595-597). It must not be forgotten that Wessely’s version of "CFS/ME" equates with neurasthenia.
Some of the abnormalities that have been demonstrated in ME/CFS by Eileen Marshall and Margaret Williams, 31st March 2006
In view of the fact that the peer-reviewed research data supports the following organic abnormalities in ME/CFS, how can so many members of the UK medical profession still persist in the belief that ME/CFS is a behavioural disorder? It is shameful that UK Government bodies have consistently refused to fund any biomedical research into this devastating disorder.
Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome by Malcolm Hooper Eileen Marshall Margaret Williams, 12th December 2005
174 pages.
Prepared for The Group on Scientific Research into Myalgic Encephalomyelitis (the Gibson Parliamentary Inquiry) that has been established "to assess the progress of scientific research on ME since the publication of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002, (and) to increase public understanding of scientific research into ME/CFS (and) to identify research and funding requirements in establishing the cause of ME/CFS".
This document is a compilation of illustrations taken from the published evidence-base of the organic aetiology of ME/CFS over the fifty years from 1955 to 2005.
Informal notes on the issue of funding biomedical research into ME/CFS Margaret Williams, 17th July 2006
The real stumbling block is that it is Government policy not to carry out biomedical research into ME/CFS: this is because the Government is taking advice only from the psychiatric lobby themselves. Layard & co are determined that CBT is the answer, and Wessely is on record as stating that ME is simply a "belief" that one has a disorder named ME.
Wessely was on no less than three MRC Boards, which might explain why the MRC itself classified ME/CFS as a mental disorder --- see page 32 of the Report of January 2005 from the MRC Neurosciences and Mental Health Board's Strategy and Portfolio Overview Group, which clearly states: "Mental health in this instance covers CFS/ME" (NMHB Mental Health Scoping Study Report).
Notably, Professor Pinching informed the Gibson Inquiry that he expects to implement the NICE guidelines next year: since these are not officially known, this lends credence to the widely-held belief that the NICE guidelines will merely re-echo the view already expressed and published in an "Effective Health Care" bulletin, May 2002:7: (4), a publication that was disseminated throughout the NHS and funded by NICE itself, which emphasised that CBT and GET are the treatments of choice for "CFS/ME". There is concern in the ME community that the Government and the MRC set the outcome they wish to achieve. This being so, it would be remarkable if NICE were to produce guidelines that are substantially different from its already documented view of the same issue.
Should the forthcoming NICE guidelines advocate nothing but CBT and GET, this would ignore the significant body of published research and clinical knowledge that ME/CFS is not a mental health (behavioural) disorder and would make a mockery of the Government's purported commitment to improving understanding of what is a serious, multi-system disorder that, unless addressed as a matter of urgency and treated appropriately, will continue to wield a huge potential for bankrupting the NHS.
Influence of exhaustive treadmill exercise on cognitive functioning in chronic fatigue syndrome.La Manca JJ; Sisto SA; De Luca J; Johnson SK; Lange G; Pareja J; Cook S; Natelson BH C.F.S.
‘We conclude that after physically demanding exercise, CFS subjects demonstrated impaired cognitive processing compared with healthy individuals.’
Notes re the evidence of Raymond Perrin PhD to the Gibson Parliamentary Inquiry into ME Eileen Marshall and Margaret Williams, 1st July 2006
18. Before criteria can be used to select patients for a study, they need to be defined and published in an accessible form in a medical journal. None of the various versions of the "London Criteria" has ever been published in a peer-reviewed journal.
19. Notwithstanding the above, in 2004 AfME announced that the MRC-funded PACE trials on CFS will use the "London Criteria" in addition to the Oxford criteria, and this was supported by Dr Charles Shepherd of the ME Association. Given that, by case definition, the Oxford criteria specifically exclude those with a neurological disorder (and the WHO classifies authentic ME as a neurological disorder), it must be asked what exactly is the case definition upon which the MRC trials are based, and if the necessary rigorous scientific standards are being applied in the case of ME/CFS?
AACF disappoints by Jill Mclaughlin
There were many presentations and discussions of the same aspects of sleep, exercise, goal setting, counseling, and CBT that we've all heard over and over. Trudy Chalder of the UK, a Wessely colleague, gave a talk on CBT. From reports I've seen, her presentation made very little scientific sense. While she apparently states that CFS is a physical rather than psychological illness, she then goes on to present CBT and exercise as the way to overcome symptoms and thus achieve normality -- which requires little more than sleep management, keeping regular hours, avoiding naps and a realistic exercise plan - even if it results in worsening of symptoms. This is absurd and contradictory and, and more to the point, harmful, to patients who are very ill. To ignore the patient's experience and tell them to ignore their symptoms - not only if they do not improve but even - especially - if they are worsened, is abusive. She further claims that patients should concentrate on overcoming symptoms rather than looking for a cause of symptoms. This presumptive, value-laden, arrogant approach is the ultimate in "blame the victim" - not only for their symptoms but their inability to overcome them.
The complexity of CBT studies, variability of the interpretation and application, their varied inclusion and exclusion criteria, the logistical difficulties in ensuring that they are properly blinded, the high drop out rates, and the subjective means used for most evaluations, raises serious doubt as to the validity of any of them.
The dangerous dominance of Psychiatry in ME/CFS - By Stephen Ralph
It is quite obvious to many who have taken interest in the present situation that psychiatrists are in fact the wrong tool for the job regardless of how esteemed or respected they are. Being esteemed and respected can in fact make them even more dangerous to patients if no one dares to question their fundamental beliefs. These so called respected and esteemed doctors become unstoppable which then allows them to take ME/CFS medicine up a very long blind alley. In doing this these doctors provide nothing for patients and indeed they then harm patients exploiting their unquestionable beliefs. Years will be wasted on such a situation whilst those clinicians concerned spend their time simply earning vast amounts of money handed to them by the Department of Health through the Medical Research Council through the maintenance of their feckless arrogance and their faulty belief systems.
Meanwhile the patients will gain nothing from them and will go on suffering.
Insufficient data, inappropriate conclusion an article about CBT on the BMJ Journal website
Comments by Abhijit Chaudhuri, Senior Lecturer in Clinical Neurosciences University of Glasgow
I have a few concerns regarding the design and interpretation of this published trial (1).
First, the trial arms were not matched for the number of contacts with the health care professionals. Experience from larger and more carefully controlled randomised interventional trials of patients with chronic fatigue syndrome has clearly shown that short-term improvement in symptoms are directly related to the maintenance of regular contacts with the health care professionals rather than due to the therapeutic effect of the intervention itself and consequently, the improvement is not sustained once the contact is lost (2). The authors did not offer patients in their waiting list the opportunity to meet therapists regularly for five months but without having cognitive behaviour therapy (CBT). In addition, there are no follow-up data regarding patients in the intervention arm beyond five months to show that the specific treatment benefit was carried forward in the absence of regular contacts with the therapists. Taken together, one has to be extremely cautious in inferring direct benefit from CBT in the intervention arm (as opposed to short-term benefit from close contact with therapists) and such a claim would only reflect uncritical belief in the efficacy of CBT.
Second, the authors indicated that a proportion of their patients were "passive", i.e., adolescents who spend "most time lying down and go out infrequently… most do not attend school at all" (p2, intervention). The baseline characteristics show that all participants were attending school - either full time or part time (Table 1) and yet nearly a third of patients in the intervention arm were considered to be "passive" by the authors. I am not sure if these data are compatible with their own definition of passivity (1). May I ask what were the outcome results of subgroup analysis in the so-called "active" and "passive patients?
Third, the results (Table 2) did not show how many adolescents in each arm returned to full-time schooling, clearly a more meaningful and simpler index of response to therapy.
Fourth, it was suggested that the intervention (CBT) was effective by challenging patients’ belief that activity would aggravate symptoms (p2, "intervention" and p5,"what this study adds"). If it is true, then I am afraid the authors challenged a scientific fact because epidemiological data confirm that [symptoms] made worse by exercise is a characteristic feature of chronic fatigue syndrome (3). Encouraging activity in disabled patients is entirely different from challenging an accepted feature of the disease: e.g., when a patient with hemiparesis is encouraged to walk, the existence of weakness due to a stroke is not challenged.
Finally, the trial recruited relatively small number of patients and given a high drop-out rate (nearly 20%) of the participants in the intervention arm, there is a possibility of Type 2 error.
In conclusion, the study does not have the strength to conclude that "CBT is an effective treatment for chronic fatigue syndrome in adolescents"(1). Amendments regarding the conclusion and the rhetorical summary point of this paper are to be expected from the authors and/or the editors. Failure to do so would perpetuate the view that the BMJ has a selective bias towards research that supports a psychological view of chronic fatigue syndrome irrespective of the quality of the presented material.
CBT, peer pressure and wishful thinking Ken S Linder comments on the same article
Despite many years of trying to prove the effectiveness of CBT in the treatment of chronic pain and various other chronic illnesses, there has never been a scientific peer reviewed paper that demonstrated any statisitaclly significant positive outcome from CBT in the actual reduction of pain or in the curing of an illness or even the reduction of physical symptoms. Yet, those dedicated to its use continue to believe that if they do the same thing again and again (CBT in a CFS patient) they will get a different result. This is known as "Magical Thinking".
From the Assistant Secretary of Health Dr Philip Lee, U.S. Chair of Chronic Fatigue Syndrome Co-ordinating Committee (CFSCC), 13 September 1996:
There is mounting evidence that:
a.. early diagnosis and aggressive rest, particularly in the initial stage, can have a crucial influence on duration, severity and recovery;
b.. each person with ME/CFS (child or adult) has to find his/her own safe limits and can not have activity, mental or physical, prescribed by others; mental activity can be every bit as detrimental as physical exertion.
Medical Neurobiology of CFS & FM: May May 7-9, 1993 by Jay Goldstein
It is widely documented that exercise is an exacerbator of CFIDS symptoms. Drs. Mena and Goldstein presented a series of SPECT scans which showed extreme hypoperfusion (reduced blood flow) in the brain following exercise. There appeared to be "holes" where blood would normally be flowing -- the degree of hypoperfusion was astonishing. Even 24 hours later, cerebral blood flow was severely reduced.
Cerebral hypoperfusion is not the only result of exercise intolerance. Drs. Lapp and Goldstein referenced irregular tidal volume rates common in PWCs. Hyperventilation and shallow breathing are frequent results of exertion. Normal controls breathe irregularly at the start of exercise, but respiration becomes regular over time. Dr. Lapp reported that PWCs breathed more regularly than controls at the outset, but during exercise their breathing was more variable. Dr. Goldstein concurred, "This phenomenon has never been described before in any population and, as of now anyway, we think that it's a diagnostic marker for CFS."
Neuroendocrine responses were often reversed or blunted in the Cheney-Lapp study. Cortisol, epinephrine, norepinephrine, DHEA levels and body temperature normally rise with exercise, but PWCs were found to have lower than expected measures of all of the above. Dr. Goldstein related this phenomenon to limbic dysfunction, as altered levels of interleukins and nitric oxide (NO) can result in altered neuroendocrine responses to exercise.
Dr. Lapp and Dr. Kathy Sietsema reported that PWCs reached anaerobic threshold much sooner than predicted. Anaerobic threshold (AT) is the point at which a healthy person cannot exercise any longer (commonly called "hitting the wall"). In the Cheney-Lapp study, PWCs continued exercising beyond the point of AT. Dr. Cheney has hypothesized that PWCs normally perform above AT in everyday activity due to a metabolic injury, and therefore are more accustomed to performing at this level than controls.
Dr Darrel Ho-Yen of Scotland,
(a well respected M.E. researcher and virologist) was published in the British Medical Journal in 1994:
"Patients with (ME/CFS) should be advised not to increase their activities gradually until they feel 80% of normal." (BMJ 1994:309:1515).
National ME / FM Action Network's 1st Annual Symposium on Parallels Between Post-Polio Sequelae, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
. June 15, 2002
Dr. Dowsett believes that the polio vaccine made room for other polio-like viruses (from the family of viruses called enteroviruses) to take over. According to Dr. Dowsett's research and other work, these other viruses may even hit some parts of the brain harder than in polio, judging by the brain fatigue and research on the ME/CFS brain. So, even if people with ME/CFS don't have paralysis and get as physically weak as people who had polio, they may be even more impaired in other ways.
This has VERY IMPORTANT implications for assessment of disability and for treatment.
Important Treatment Information: Dr. Bruno says pacing, NOT cognitive behavioural therapy and NOT graded exercise, is the cornerstone of treatment for people with PPS and ME/CFS. The key message is that people with ME/CFS and PPS have demonstrated brain stem dysfunction. This explains a multitude of symptoms because the brain stem controls so many physical and mental processes. Dr. Dowsett supports this view.
As the Canadian Newsletter `Quest` reports, both Dr Dowsett`s and Dr Bruno`s presentations are amazing, Dr Dowsett tells of her work throughout the years on ME/CFS linking it up with the Post Polio Sequelae. Dr Bruno is admirable in his determination to get over to people the effects of PPS, ME/CFS. and what can be done to allow people to help themselves improve their quality of life.
Research Criteria for Penguins by Peter Kemp
Professor Hoopers letter to the BMJ re: NICE – 240106 Letter to Dr Kieran Walsh - 24th January 2004
It is surely regrettable that Wessely persistently fails to apply his own criteria when he is addressing the issue of ME/CFS, his studies of which having been criticised in the literature for lacking the necessary rigorous scientific scrutiny.
Unless corrective measures are taken by NICE to ensure that their final guidelines for ME/CFS are unbiased and are based on sound and reliable evidence, they will not be effective.
Your article says that in November 2005 NICE commissioned BMJ Learning to produce a series of learning modules based on its guidance. If the future module for ME/CFS were to rely solely upon the intended NICE guidelines, it will not exemplify the standards you endorse in your article.
PRESS RELEASE & GENERAL STATEMENT By the 25% M.E. GROUP – National Support Group for Severe M.E. Sufferers.
Quote: Are a small group of vocal researchers trying to hijack vast amounts of public money? In excess of £4 million has already been spent by psychiatrists trying to prove that CBT/GET are the most appropriate forms of treatment for CFS/ME. Despite this a major review of evidence for the government described the evidence as "poor". Now a proposal to spend a further £2.6 million within the psychiatric field is being considered. This is despite the fact that ME is a multi-system/multi-organ disease, which has been formally classified by the World Health Organisation as a Neurological Disorder since 1969.
Worse still, many people with "classic" ME report that these forms of treatment are the most unhelpful and harmful to their health and often severely restrict any improvement in their condition. In a recent ME patient survey, it was found that up to 50% (1) were made worse by Graded Exercise Therapy. In the same survey, 93% (1) found rest and pacing of their condition much more helpful in managing their illness.
Unhelpful Counsel? MERGE's response to the CMO working report on ME/CFS.
An excerpt: "In one patient-group survey, only 7% of respondents found the therapy [CBT] ‘helpful’, compared with 26% who believed it made them ‘worse’. The remaining 67% reported ‘no change’."
ME/CFS and the Media
Evidence from over 1,000 sufferers submitted to the Chief Medical Officer's Report on ME indicated that 67% found CBT resulted in "no change" to their condition (7% found CBT "helpful"; 26% said it made them "worse") and almost 50% reported that GET had made their condition "worse" (35% found it "helpful"; 15% reported "no change").
In fact, 50% of patients who filled in a treatment questionnaire for the Chief Medical Officer's report stated that an exercise programme had made their condition worse.
If ME/CFS were simply the result of depression, inactivity, and lack of motivation - as many of my professional colleagues still believe - then exercising your way out of it would be a perfectly logical solution. However, current research strongly points to the fact that there are genuine physiological and neuromuscular reasons why these people are unable to return to normal levels of fitness - no matter how hard they try.
