August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
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Discussion in 'General ME/CFS News' started by AndrewB, Aug 28, 2011.

  1. AndrewB

    AndrewB Senior Member

    England, UK
    Copied here for those who arent able to find it elsewhere ;

    The Medical Research Councils PACE Trial of certain behavioural modification interventions for patients with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) is controversial on many levels. PACE is the acronym for Pacing, Activity, and Cognitive behaviour therapy; a randomised Evaluation.
    The PACE trial is being conducted under the auspices of the Medical Research Council (MRC) and is funded by the MRC, the Scottish Chief Scientists Office, the Department of Health (DoH) and the Department for Work and Pensions (DWP). The PACE Trial is the only clinical trial that the DWP has ever funded.
    The MRCs PACE Trial 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 which support them have tried to stop before a single patient could be recruited.
    Why would people with a severely disabling disease ?? a disease that manifests the pathology summarised on the preceding two pages ?? seek to stop research into their own condition?
    To answer this question it is necessary to understand the motives of the trial researchers a group of UK psychiatrists and their adherents who advise that the search for a single identifiable cause is meaningless and whose stated aim is to eradicate Myalgic Encephalomyelitis, a disease that has been classified by the World Health Organisation (WHO) in the International Classification of Diseases (ICD) as a neurological disorder for the last 40 years, currently under Disorders of Brain at ICD?10 G93.3 (to which in ICD?10 the WHO specifically codes chronic fatigue syndrome (CFS), hence the use of the term ME/CFS to signify the neurological disease ME).
    This is a classification with which these psychiatrists disagree. Instead, they believe ME/CFS (which they call CFS/ME) to be a behavioural disorder that is classified as a fatigue syndrome in ICD?10 at F48.0 under Mental and Behavioural Disorders and that it is perpetuated by the aberrant beliefs of the patients themselves, and they seek to modify such aberrant beliefs using a programme of Cognitive Behavioural Therapy (CBT) designed by themselves, which incorporates aerobic Graded Exercise Therapy (GET).
    These psychiatrists and their supporters, many of whom work for the medical and permanent health insurance industry, are known as the Wessely School (Hansard: Lords: 9th December 1998:1013), a small but influential group led by Professor Simon Wessely from Kings College Hospital and the Institute of Psychiatry (IoP), London, whose intention is said to be to eradicate ME (Eradicating Myalgic Encephalomyelitis. Pfizer/Invicta: 4?5 /LINC UP, 15th April 1992, Belfast Castle) by dropping ME from CFS/ME when expedient (BMJ 2003:326:595?597) and then to reclassify CFS as a behavioural disorder under syndromes of chronic fatigue under Mental and Behavioural Disorders at ICD?10 F48.0.
    Indeed, this has already commenced because, using Wesselys own material, in 2000 the first edition of the IoPs Guide to Mental Health in Primary Care included CFS/ME as a mental disorder. (This Guide was wrongly described by Ministers of State as the WHO Guide because as an acknowledged WHO Collaborating Centre on mental health, the IoP is entitled to use the WHO logo). In September 2001, the WHO issued a statement repudiating the unofficial re?classification by the UK Collaborating Centre at the IoP, saying that it was at variance with the WHOs position. An erratum to the Guide had to be issued, but only after 30,000 copies had been sold. The matter was raised in Parliament on 22nd January 2004, when Earl Howe noted that Professor Wessely had: effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness (Hansard: Lords: 23rd January 2004:656:7:1192).
    Undaunted, these psychiatrists then asserted that the WHO itself had classified the same disorder in two places in ICD?10, once in the Neurological Section (G93.3) and also in the Mental (Behavioural) Section (F48.0).
    Once again, the psychiatrists claims were repudiated by the WHO, who on 23rd January 2004 confirmed in writing: According to the taxonomic principles governing ICD?10, it is not permitted for the same condition to be classified to more than one rubric.
    The WHO further confirmed that this means that ME/CFS cannot be known as or included with neurasthenia or any other mental or behavioural disorder, as ME/CFS is a distinct nosological disorder.
    Wessely, however, does not agree: he believes that ME is a behavioural disorder and that patients ascription of the disease to a virus is somatisation par excellence (see below).
    It is Professor Wessely who is in charge of the MRC PACE Clinical Trial Unit.
    There is a significant amount of documented international concern about the Wessely Schools stance and the harm it might do to patients.
    Another curious factor about the PACE Trial is the role played by one of the patients charities (Action for ME), without whose help the PACE Trial might never have happened see below. It is a Government?funded charity, having received substantial Section 64 funding (Health Services Act 1968) in return for supporting DoH policy priorities (which currently include managing CFS/ME as a behavioural disorder).
    Good science requires that hypotheses are tested in an objective manner, but there are many disturbing aspects about the MRC PACE Trial.
    Given that the Investigators have already formed their belief that CFS/ME is a behavioural disorder, it is troubling to observe how they seem to have allowed their beliefs to undermine the objectivity of the trial:

    participants were to be chosen using criteria designed by the Investigators themselves rather than using criteria accepted by the international medical community

    the Investigators criteria were financially supported by the Chief Investigator himself

    the Investigators abandoned their intention to use any objective measurements of outcome and will define the self?reported outcome measures using a scale devised by themselves (which has been described as a parody of modern scientific measurement see below)

    the Investigators have even redefined the meaning of the word recovery see below.
    The Investigators have received millions of pounds sterling to carry out this trial, even though they already know the answers and they have publicly acknowledged that for ME/CFS patients their psychotherapy interventions are not remotely curative and that many patients do not benefit from them see below.
    Part of the Trial therapists training appears to include misleading participants: therapists are told to assure participants they believe their illness is real and to show empathy, whilst also being informed in their training that there is no underlying pathology in CFS/ME, so there is one message for the therapists and another for participants.
    Therapists and research nurses must achieve positive relationships with participants. Research Nurses (RNs) will be selected and trained to achieve positive relationships with participants. In addition to seeing them for a minimum of 5 times in 52 weeks, we will use techniques commonly employed in cohort studies to maintain participation (Trial Protocol, final version 5.0, 01.02.2006). This involves sending birthday cards to participants in order to create an illusion of warmth and of empathy that is intended to elicit positive
    associations purely in order to maintain participation, a tactic that may be considered misleading and even a form of coercion.
    Participants are trained to ignore their symptoms (which a world expert in the disorder described as dangerous in his Witness Statement to the High Court see below).
    Not only were patients seemingly coerced into the Trial, but they were also to be subjected to thought modification and to engage in incremental aerobic exercise that may at best be of no value and according to some international experts in the disorder at worst might kill them.
    Fully informed consent may not have been obtained from participants, because the beliefs of the Investigators and the therapists about the disorder were not made explicit to them (ie. that the Investigators consider it to be a behavioural disorder and that the PACE Trial is based on their assumption that participants do not have a physical disease), which takes advantage of participants lack of knowledge. To take advantage of patients is in breach of the General Medical Council Regulations.
    The PACE Trial started in 2004 and aimed to recruit 600 participants. Originally based in three different Centres (Kings College, London; St Bartholomews Hospital, London and the Western General in Edinburgh), three new Centres subsequently began recruiting participants (the John Radcliffe Hospital in Oxford; the Royal Free Hospital in London and a second Centre at St Bartholomews Hospital, London).
    The PACE Trial team produces a Newsletter for participants and in Issue 2, March 2007, the Chief Investigator, Professor Peter White, a psychiatrist from St Bartholomews Hospital, wrote: These extra centres will significantly boost recruitment into the study.
    However, it seems that because of the continued failure to meet the recruitment target, it was deemed necessary to open a seventh Centre at Frenchay Hospital in Bristol, which began recruiting in April 2007.
    Participants were to be randomly allocated to one of four groups (Pacing, Activity/Exercise, Cognitive Behavioural Therapy, or Standardised Specialist Medical Care) with the objective of achieving four groups of 150 patients from according to the 2002 Chief Medical Officers Working Group Report on CFS/ME ?? 240,000 sufferers in the UK. No severely affected patient and no children were to be included in the trial.
    Despite such a relatively small number in each arm of the trial, using the trials leitmotif of positive reinforcement, the PACE Participants Newsletter, Issue 3, December 2008 states: The PACE trial retains a significant role as the largest trial ever for comparison of rehabilitative therapies for CFS/ME.
    The results are due to be published in 2010, originally said to be summer, then autumn, but according to the Chief Investigator now moved forward to the spring.
    There are some extremely disquieting issues surrounding the MRC PACE Trial, and documents obtained under the Freedom of Information Act allow the full story to be told for the first time.
    The PACE Trial: source of information
    The PACE Trial Manuals, as well as Minutes of meetings and related correspondence (amounting to approximately 2,000 pages) were obtained via the Freedom of Information Act (FOIA). Requests were made to various bodies including the MRC, the Department for Work and Pensions and the Scottish Chief Scientists Office and took over twelve months to achieve.
    There are three PACE Trial Manuals for therapists (relating to Cognitive Behaviour Therapy, Graded Exercise Therapy, and Adaptive Pacing Therapy [APT] respectively) and one for doctors (relating to
    Standardised Specialist Medical Care or SSMC); apart from the latter, there are also respective versions for participants.
    It is notable that the West Midlands Multicentre Research Ethics Committees letter of 29th October 2002 confirming approval of Peter Whites application for ethical approval states: MREC noted the importance of the study and wished to commend the researchers on the RCT design (random controlled trial), an unusual commendation which seems to show bias from the outset and may indicate the MRECs ignorance of the issues that lie at the heart of the international disquiet surrounding the MRC PACE Trial.
    Every effort has been made to view objectively the PACE Trial information that informs these comments. However, the information must be assessed in the light of the significant body of evidence that ME/CFS is not a behavioural disorder; moreover the quotations from the Manuals speak for themselves.
    Although every Manual states that it is copyright and that no part may be reproduced without permission, the Information Commissioners Office has confirmed that if documents are released under the Freedom of Information Act, they enter the public domain and can be used by members of the public and not only by the person who made the application.
    It is the case that the MRC was not happy that so much of what it regarded as confidential information about the PACE Trial has been released. A letter dated 14th February 2008 from the Information Commissioners Office to the person who made the FOIA application states: The MRC has expressed its concern over how you came to be in possession (of this information).
    Given the nature of that information, the MRCs concern may well be justified.
    The difference between ME/CFS and CFS/ME
    What the Wessely School refers to CFS/ME is, according to them, a condition of medically unexplained fatigue that is perpetuated by inappropriate illness beliefs, pervasive inactivity, current membership of a self?help group and being in receipt of disability benefits (PACE Trial Identifier, section 3.9) and it should be managed by behavioural interventions (CBT and GET). Simon Wessely believes that it is the same as neurasthenia: Neurasthenia would readily suffice for ME (Lancet 1993:342:1247?1248) and that attribution by patients to a virus is somatisation par excellence (J Psychosom Res 1994:38:2:89?98). The Wessely School believes that there are no physical signs of disease and assert that there is no pathology causing the patients symptoms, simply that patients are hypervigilant to normal bodily sensations (see below).
    Seemingly because of the Wessely Schools beliefs, children with ME/CFS have been diagnosed as having pervasive refusal syndrome and many have been forcibly removed from their distraught parents (see below), who themselves have been labelled as having Munchausens Syndrome by Proxy, a damaging label that is never deleted from their medical records.
    Whilst Wessely School psychiatrists continue to believe and teach (and advise Government agencies) that CFS/ME is a behavioural disorder that must be managed by behavioural interventions and incremental aerobic exercise (and which two of the PIs assert can be cured by those interventions), in reality true ME/CFS affects every system in the body and many physiological abnormalities have been documented.
    At the Press Briefing held on 3rd November 2006 by the US Centres for Disease Control to announce its ME/CFS awareness campaign, two eminent professors who specialise in ME/CFS spoke on public record about the nature of ME/CFS. Anthony Komaroff, Professor of Medicine, Harvard Medical School, said:
    Its 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.
    Its not an illness that people can simply imagine that they have and its not a psychological illness. In
    my view, that debate, which was waged for 20 years, should now be over.
    Brain imaging studieshave shown inflammation, reduced blood flow and impaired cellular function in
    different locations of the brain(and) they change a persons life.
    Today we have powerful new research technologies and tools we didnt have even 20 years ago, and they
    are being put to good use by laboratories all over the world.
    Nancy Klimas, Professor of Medicine and Immunology at the University of Miami (who at the time was
    President of the International Association for Chronic Fatigue Syndrome, an organisation of medical
    professionals and research scientists), said:
    Ive been waiting for this day for a long time. Over the past 20 years, Ive treated more than 2,000 (ME)CFS
    Whilst attitudes have improved in recent years, the launch of this national awareness campaign is so
    important to increasing understanding of this illness.
    Historically, its been the lack of credibility in this illness that has been one of our major stumbling blocks
    to making progress.
    Today there is evidence of the biological underpinnings. And theres evidence that the patients with this
    illness experience a level of disability thats equal to that of patients with late?stage AIDS, patients
    undergoing chemotherapy, patients with multiple sclerosis.
    And that has certainly given it a level of credibility that should be easily understood.
    We need to educate physicians and other health care workers about this illness so that every single
    doctorknows the diagnostic criteria.
    There are diagnostic criteria that enable clinicians to diagnose (ME)CFS in the primary care setting.
    The CFS toolkit should be in the hands of every doctorin the country, because this is the key to moving forward
    Referenced illustrations from the medical literature are provided in Section 2, but an introductory overview
    of documented abnormalities in ME/CFS include the following:
    abnormalities of the central nervous system include abnormalities of brain cognition, brain
    perfusion, brain metabolism and brain chemistry; there is evidence of low blood flow in multiple
    areas of the brain; neuro?imaging has revealed lesions in the brain of approximately 80% of those
    tested and according to the researchers, these lesions are probably caused by inflammation: there is
    a correlation between the areas involved and the symptoms experienced; abnormalities on SPECT
    scans provide objective evidence of central nervous system (CNS) dysfunction; there is evidence of
    a chronic inflammatory process of the CNS, with oedema or demyelination in 78% of patients
    tested; there is evidence of a significant and irreversible reduction in grey matter volume
    (especially in Brodmanns area 9) which is related to physical impairment and may indicate major
    trauma to the brain (which could also explain the low recovery rate); there is evidence of seizures; a
    positive Romberg is frequently seen in authentic ME/CFS patients
    abnormalities of the autonomic and peripheral nervous systems: there is evidence of
    dysautonomia in ME/CFS patients
    cardiovascular dysfunction: there is evidence of haemodynamic instability and aberrations of cardiovascular reactivity (an expression of autonomic function); there is evidence of diastolic cardiomyopathy; there is evidence of endothelial dysfunction; there is evidence of peripheral vascular dysfunction with low oxygenation levels and poor perfusion and pulsatilities; there is evidence of abnormal heart rate variability and evidence of abnormal orthostasis; there is evidence of abnormally inverted T?waves and of a shortened QT interval, with electrophysiological aberrancy; there is evidence of abnormal oscillating T?waves and of abnormal cardiac wall motion (at rest and on stress); there are indications of dilatation of the left ventricle and of segmental wall motion abnormalities; there is evidence that the left ventricle ejection fraction at rest and with exercise is as low as 30%; there is evidence of reduced stroke volume
    respiratory system dysfunction: there is evidence of significant reduction in many lung function parameters including a significant decrease in vital capacity; there is evidence of bronchial hyper?responsiveness
    a disrupted immune system: there is evidence of an unusual and inappropriate immune response: there is evidence of very low levels of NK cell cytotoxicity; there is evidence of low levels of autoantibodies (especially antinuclear and smooth muscle); there is evidence of abnormalities of immunoglobulins, especially sIgA and IgG3, (the latter having a known linkage with gastrointestinal tract disorders); there is evidence of circulating immune complexes; there is evidence of a Th1 to Th2 cytokine shift; there is evidence of abnormally diminished levels of intracellular perforin; there is evidence of abnormal levels of interferons and interleukins; there is evidence of increased white blood cell apoptosis, and there is evidence of the indisputable existence of allergies and hypersensitivities and positive mast cells, among many other anomalies, with an adverse reaction to pharmacological substances being virtually pathognomonic
    virological abnormalities: there is evidence of persistent enterovirus RNA in ME/CFS patients; there is evidence of abnormalities in the 2?5 synthetase / RNase L antiviral pathway, with novel evidence of a 37 kDa binding protein not reported in healthy subjects or in other diseases; there is evidence of reverse transcriptase, an enzyme produced by retrovirus activity, with retroviruses being the most powerful producers of interferon; there is evidence of the presence of HHV?6, HHV?8, EBV, CMV, Mycoplasma species, Chlamydia species and Coxsackie virus in the spinal fluid of some ME/CFS patients, the authors commenting that it was surprising to find such a high yield of infectious agents on cell free specimens of spinal fluid that had not been centrifuged; recently a direct link between a gammaretrovirus (XMRV, which is the same family as the AIDS virus) and ME/CFS has been demonstrated
    evidence of muscle pathology: this includes laboratory evidence of delayed muscle recovery from fatiguing exercise and evidence of damage to muscle tissue; there is evidence of impaired aerobic muscle metabolism; there is evidence of impaired oxygen delivery to muscle, with recovery rates for oxygen saturation being 60% lower than in normal controls; there is evidence of prolonged EMG jitter in 80% of ME/CFS patients tested; there is evidence of greater utilisation of energy stores; there is evidence that total body potassium (TBK) is significantly lower in ME/CFS patients (and abnormal potassium handling by muscle in the context of low overall body potassium may contribute to muscle fatigue in ME/CFS); there is evidence that creatine (a sensitive marker of muscle inflammation) is excreted in significant amounts in the urine of ME/CFS patients, as well as choline and glycine; there is evidence of type II fibre predominance, of scattered muscle fibre necrosis and of mitochondrial abnormalities
    neuroendocrine abnormalities: there is evidence of HPA axis dysfunction, with all the concomitant implications; there is evidence of abnormality of adrenal function, with the size of the glands being reduced by 50% in some cases; there is evidence of low pancreatic exocrine function; there is evidence of an abnormal response to buspirone challenge, with a significant increase in prolactin
    release that is not found in healthy controls or in depressives; there is evidence of abnormal arginine vasopressin release during standard water?loading test; there is evidence of a profound loss of growth hormone; even when the patient is euthyroid on basic screening, there may be thyroid antibodies and evidence of failure to convert T4 (thyroxine) to T3 (tri?iodothyronine), which in turn is dependant upon the liver enzymes glutathione peroxidase and iodothyronine deiodinase, which are dependant upon adequate selenium in the form of selenocysteine (which may be inactivated by environmental toxins)
    defects in gene expression profiling: there is evidence of reproducible alterations in gene regulation, with an expression profile grouped according to immune, neuronal, mitochondrial and other functions, the neuronal component being associated with CNS hypomyelination
    abnormalities in HLA antigen expression: Teraski from UCLA found evidence that 46% of ME/CFS patients tested were HLA?DR4 positive, suggesting an antigen presentation
    disturbances in oxidative stress levels: there is mounting evidence that oxidative stress and lipid peroxidation contribute to the disease process in ME/CFS: circulating in the bloodstream are free radicals which if not neutralised can cause damage to the cells of the body, a process called oxidative stress: in ME/CFS there is evidence of increased oxidative stress and of a novel finding of increased isoprostanes not seen in any other disorder; these raised levels of isoprostanes precisely correlate with patients symptoms (isoprostanes being abnormal prostaglandin metabolites that are highly noxious by?products of the abnormal cell membrane metabolism); there is evidence that incremental exercise challenge (as in graded exercise regimes) induces a prolonged and accentuated oxidative stress; there is evidence of low GSH?PX (glutathione peroxidase, an enzyme that is part of the antioxidant pathway: if defective, it causes leakage of magnesium and potassium from cells)
    gastro?intestinal dysfunction: there is evidence of objective changes, with delays in gastric emptying and abnormalities of gut motility; there is evidence of swallowing difficulties and nocturnal diarrhoea; there is evidence going back to 1977 of hepatomegaly, with fatty infiltrates: on administration of the copper response test, there is evidence of post?viral liver impairment ?? an increase of at least 200 in the copper level is the expected response, but in some severely affected ME/CFS patients the response is zero; there is evidence of infiltration of splenic sinuses by atypical lymphoid cells, with reduction in white pulp, suggesting a chronic inflammatory process; there is evidence that abdominal pain is due to unilateral segmental neuropathy; there is significant evidence that people with ME/CFS have increased serum levels of IgA and IgM against the LPS of gram?negative enterobacteria, indicating the presence of an increased gut permeability resulting in the autoimmunity seen in many ME/CFS patients; this indicates that the symptoms of irritable bowel seen in ME/CFS reflect a disorder of gut permeability rather than psychological stress as most psychiatrists believe (gastro?intestinal problems are a serious concern in ME/CFS, and 70% of the bodys immune cells are located in the GI tract)
    reproductive system: there is clinical evidence that some female patients have an autoimmune oophoritis; there is evidence of endometriosis; there is evidence of polycystic ovary syndrome; in men with ME/CFS, prostatitis is not uncommon
    visual dysfunction: there is evidence of latency in accommodation, of reduced range of accommodation and of decreased range of duction (ME patients being down to 60% of the full range of eye mobility); there is evidence of nystagmus; there is evidence of reduced tracking; there is evidence of problems with peripheral vision; there is evidence that the ocular system is very much affected by, and in turn affects, this systemic condition.
    The above list is by no means comprehensive but merely gives an overview of documented abnormalities seen in ME/CFS that can be accessed in the literature, all of which is available to the Wessely School.
    ME/CFS has been defined in the Canadian Guidelines (2003), which have been adopted internationally and are the best aid to the diagnosis of ME/CFS but which the Chief Investigator Peter White insists should not be used in the UK (see below), perhaps because they are unambiguous:
    The question arises whether a formal CBT or GET programme adds anything to what is available in the ordinary medical setting. A well?informed physician empowers the patients by respecting their experiences, counsels the patients in coping strategies, and helps them achieve optimal exercise and activity levels within their limits in a common?sense, non?ideological manner, which is not tied to deadlines or other hidden agenda.
    In its 2007 Clinical Guideline 53 on CFS/ME, the National Institute for Health and Clinical Excellence (NICE) specifically recommended that the Canadian case definition of ME/CFS should not be used in the UK. NICE based its decision on a small number of mildly positive clinical trials by the Wessely School, while devaluing evidence from scientific studies and patients own evidence. ME/CFS is the only physical condition for which behavioural modification is the primary (indeed only) management approach in a NICE Guideline. The MRC declines to fund biomedical studies, yet the cost of implementing the Wessely School regime in the UK is 3.75 million annually, in addition to non?recurrent costs of 26.45 million (Breakthrough, MEResearch UK, Spring 2008).
    There is no cure for ME/CFS
    According to the Chief Medical Officers Working Group Report on CFS/ME, there is no cure (CMOs Working Group Report: January 2002: so it is misleading of the MRC PACE Trial Principal Investigators to imply otherwise and to try to achieve their aim by using techniques of persuasion in an attempt to control the mind of participants by constantly bombarding them with language that seems to misinform them.
    For the Principal Investigators to state that full recovery is possible with CBT/GET, as Professor Michael Sharpe asserted (There is evidence that psychiatric treatment can be curative. BMB 1991:47:4:989?1005) and as Professor Peter White using the General Practice Research Database to show that social factors affect prognosis in CFS ?? unambiguously asserted (recovery from CFS is possible following CBT.Significant improvement following CBT is probable and a full recovery is possible. Psychother Psychosom 2007:76(3):171?176), implying that patients can recover from ME/CFS if they would only follow the psychiatrists recommended regime of CBT/GET, seems to offer false hope: the recovery statistics simply do not support such a belief.
    To imply otherwise would seem to be overt misrepresentation of the significant body of peer reviewed published biomedical science.
    However, in their 2007 paper Knoop, White et al appear oblivious and confidently state: The first clinical implication of the present study is that a therapist delivering CBT can tell the patient that substantial improvement is likely and that full recovery is possible. By communicating this, the therapist can counterbalance factors that lower the expectations of the patient. Examples of such factors are a negative attitude of certain patient advocacy groups towards behavioural interventions or an oversolicitous (sic) attitude of others in response to CFS. There is empirical evidence that lower expectations of patients have a negative influence on therapy outcome.
    This belief may explain the instructions in the PACE therapists Manuals for the need for repeated positive reinforcement.
    In the same 2007 paper, Whites definition of recovery is curious:
    The second clinical implication of the present study is that recovery is a construction. The percentage of recovered patients differed depending on the definition of recovery used. It is possible that a patient has another concept of recovery than the therapist.
    The Penguin English Dictionary defines recovery as regaining health after sickness.
    To most rational people, recovery means being restored to previous good health, with the ability to return to school, work, sport, social activities and hobbies with no ill?effects. For them, unlike for Peter White, recovery is not a negotiable term.
    According to US statistics provided in August 2001 by the Centres for Disease Control CFS Programme Update, only 4% of patients had full remission (not recovery) at 24 months.
    In 2005, the message was clear: The bitter, unpalatable reality is that ME/CFS patients can be pro?active, they can have a good attitude, they can try various drugs and non?drug interventions, and they can still remain ill, even profoundly disabled (The CFIDS Chronicle Special Issue: The Science & Research of ME/CFS: 2005?2006:59).
    In 2007, the ME Association Medical Advisor pointed out that: Several research studies looking at prognosis have been published. Results from these studies indicate that ME/CFS often becomes a chronic and very disabling illness, with complete recovery only occurring in a small minority of cases. A recent Systematic Review of 14 studies found a median recovery rate of 7% (ME/CFS/PVFS: An exploration of the key clinical issues prepared for health professionals. Drs Charles Shepherd & Abhijit Chaudhuri, published by The ME Association, 2007).
    For the Wessely School to offer such people only a management regime that is designed to alter their (correct) perception that they are seriously physically ill, and to imply that restructured thinking and incremental aerobic exercise will result in significant improvement (and even full recovery), is believed by many people to amount to professional misconduct.
  2. AndrewB

    AndrewB Senior Member

    England, UK
    ME/CFS causes death
    People die from ME/CFS, but not from states of chronic fatigue or CFS/ME as defined by the Wessely School.
    On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar: Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it. He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength. He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28?30). Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.
    In 1992, Professor Hugh Fudenberg from South Carolina (a pioneer of clinical immunology and one of the most distinguished minds in the field, being awarded The Medal of the Institut Pasteur at the age of 32; he was also a Nobel Prize nominee) stated that there is a greater death rate than normals in the same age range (The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome: ed. BM Hyde, published by The Nightingale Research Foundation, Ottawa, Canada, 1992: page 644).
    This was corroborated 14 years later by Professor Leonard Jason et al, who found that the three most prevalent causes of death in ME/CFS patients were heart failure, suicide and cancer and that the age of death is considerably younger than in the general population (Health Care Women Int 2006:27(2):615?626).

    Since 1987, a prominent theme running through the Wessely Schools psychiatric literature on CFS/ME
    has been that patients who present with symptoms that the psychiatrists and those they advise
    (Government agencies and the medical and permanent health insurance industry) wish to eradicate are
    an unjustified and undeserving financial burden, and that it is neither cost?effective, necessary nor
    appropriate to investigate their non?existent disorder.
    The Wessely School believes that patients with CFS/ME have dysfunctional thinking and personality
    problems and are susceptible because of their female gender, and that they must be managed by those who
    know best (ie. by Wessely School psychiatrists and their adherents) by means of behavioural interventions
    which include graded aerobic exercise. The basis of the Wessely Schools beliefs about CFS/ME upon
    which the PACE trial is based is that, together with fibromyalgia, irritable bowel syndrome, multiple
    chemical sensitivity and premenstrual syndrome, CFS/ME is a one functional somatic syndrome (ie. a
    behavioural / somatisation disorder) which, due to an artefact of medical specialisation, nave clinicians fail
    to recognise and thus treat as different disorders (S Wessely, C Nimnuan, M Sharpe, Lancet 1999:354:936?
    939; SWessely, Psychol Med 1990:20:35?53).
    The Wessely School assumes that a persons thoughts are dictating their feelings, so the objective is to
    modify the patients thoughts in order to effect a cure. However, the concept that thinking changes
    behaviour has never been proven.
    To quote William M Epstein, Professor in the School of Social Work at the University of Nevada: the
    central notion of causal direction, that cognition rules emotion, behaviour, and perhaps even physiology,
    has not been adequately proven by any test.
    According to Epstein, CBT is: barren of credible evidence to support its efficacy and the best research offers no
    credible evidence of any successful psychotherapy for any condition. He says: CBT is constantly pressing, chiding,
    encouraging, and inveighing the patient, through the demands of the therapeutic relationship, to believe, believe, believe
    in the curative ability of treatment and the authority of the therapist and he says: This is precisely the promise of
    organisations seeking members: your current behaviour is wrong (and) we can teach you better ways of living.
    Epstein points out that advocates of CBT are choosing the benefits of subjectivity over the trials of objective proof
    (Psychotherapy as Religion (Chapter 9), University of Nevada Press, Reno, Nevada, 2006).
    The Wessely School and the MRC, however, seem oblivious of the work of Epstein. Their proselytizing has
    gone on for over two decades yet has failed to produce any evidence to support their theories about ME or
    any cure for patients, perhaps because their use their own definition which excludes people with signs of
    neurological disorder, as occur in ME.
    The Wessely School Perspective
    The MRC PACE Trial is managed by a Trial Management Group, most of whose members are considered to
    support the beliefs of the Wessely School and, as noted above, Wessely himself will oversee the PACE
    Clinical Trial Unit.
    Wessely himself set up and directed The Mental Health & Neuroscience Clinical Trials Unit in 2002. It is the
    first in the UK to specialise in mental health and the neurosciences. In its first six years of operation it has
    provided advice and support to a large number of grant applications, which may explain why, despite the
    MRCs denial of bias, approximately 91% of its total grant spend on CFS/ME since 2002 (over 3 million)
    was awarded to psychiatric trials of behavioural interventions and why at least 33 funding applications for

    Apparently unheeding, in 2006 Wessely stated: Like it or not, (ME) CFS is not simply an illness, but a cultural phenomenon and metaphor of our times (Psychol Med 2006: 36: (7):895?900).
    Commenting on this, ME/CFS advocate Peter Kemp from the UK noted: It is not (ME) CFS that is a metaphor of our times. It is the researchers attitude that is a metaphor of ALL times and he considered how the Wessely School think about patients with (ME)CFS: Here is a group behaving in a way that I dont like. Shall I find out what is wrong by listening and learning? No. Ill make a judgment and then prove that I am right. It is this exact attitude that led to the rise of fascism and has been the cause of victimisation of the weak and minorities in known history.The frequent discrimination and abuse experienced by people with ME/CFS at the hands of the medical profession, researchers, benefits agencies, the media and society at large make a diagnosis of ME/CFS a social curse (Co?Cure ACT: 16th June 2006).
    Seemingly unmoved by the ever?mounting body of evidence that he is wrong, in 2007 (ie. during the life of the MRC PACE Trial), Wessely co?authored a chapter on Functional Somatic Syndromes with Lisa Page in which he included chronic fatigue syndrome (chapter 7: pp 125?136 in Handbook of Liaison Psychiatry edited by Geoffrey Lloyd and Elspeth Guthrie, CUP 2007).
    It is notable that although the disorder is referred to as chronic fatigue syndrome, Page and Wessely are clearly referring to and including ME and indeed, ME/CFS self?help support groups are mentioned in their references.
    Chapter 7 includes the following extracts:
    Functional somatic syndromes: definition and terminology
    The functional somatic syndromes refer to a number of related syndromes that have been characterised by the reporting of somatic symptoms and resultant disability rather than on the evidence of underlying conventional disease pathology.all however share the feature of a disconnection between subjective symptomatology and objective biomedical pathology.
    Chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia have been more extensively researched than most other FSS which has led to specific pathophysiological mechanisms being advanced for each. Neverthelessit remains the case that the similarities between the different FSS are sufficiently striking for there to be a compelling case for considering them together (Barksy & Borus, 1999; Wessely et al, 1999).
    The standard (medical) diagnostic criteria for FSS usually require specific symptoms to be present, whereas psychiatric classification (under the somatoform disorders) emphasises the number of symptoms.
    Patients with FSS have been rated as one of the three most common types of patients that are difficult to help (Sharpe 1994).The tendency of those with FSS to turn to alternative medicines for treatment is likely to be because alternative remedies often endorse the FSS patients own physical illness attributions (Moss?Morris et al 2003).
    Illness beliefs
    At present, chronic fatigue syndrome is the functional somatic syndrome for which there is most evidence that beliefs about the illness may impact on the course of the illness itself. Patients with chronic fatigue syndrome are more likely to make physical illness attributions (rather than normalising or psychologising attributions) for a selection of common symptoms compared to controls (Butler et al 2001) and are more likely to believe their illness will be chronic
    These beliefs and attitudes about symptoms may act as a mechanism that then guides the patient to adopt avoidant behaviours.In fact, it is a change to beliefs about avoidancethat predicts good outcome from cognitive behavioural therapy in chronic fatigue syndrome (Deale et al 1998), highlighting the need for more research into the way illness attributions maintain ill?health.

    Common threads running through the Wessely Schools documents are their refusal to heed publicly?expressed concern about what is described as their flawed methodology, and their ignoring of the copious published evidence that disproves their insistence that ME/CFS is a behavioural disorder.
    In a recent article, Wessely states: there is also a second and more disturbing explanation for the alacrity and uncritical nature with which (organic) explanations are endorsed on often the flimsiest of evidence. Psychiatry, its patients and its practitioners, continue to be stigmatised like no other branch of medicine...If one reads the angry responses to any article that mentions chronic fatigue syndrome and psychiatry in the same breath, it is clear that the drive to find an (organic) biomarker for chronic fatigue syndrome is driven not so much by a dispassionate thirst for knowledge but more by an overwhelming desire to get rid of the psychiatrists indeed, the search for infective causes and triggers for psychiatric disorders has never ceased.? (
    Inevitably, the desperation of people with ME/CFS to show how erroneous is the Wessely Schools psychosocial model of CFS/ME is escalating.
    Wessely seems to take patients drive to find a biomarker quite personally (a drive which is shared by internationally respected doctors and scientists) and appears unable to perceive any explanation other than ME/CFS patients overwhelming desire to get rid of the psychiatrists.
    Wessely appears to be so blinded by the supposed benefits afforded by a diagnosis of ME/CFS that he overlooks the simple fact that the patients life ? in every respect ? is devastated by the illness. The suffering and disruption are such that many patients could not care less about what the solution might be as long as they can improve or recover. To imply that patients would reject help because it happened to come from a psychiatrist is ludicrous.
    Patients with ME/CFS are not opposed to psychiatry or psychiatrists. Patients are opposed to the Wessely School because the theories they have espoused for over two decades do not help them and do not accord with the biomedical science that underpins ME/CFS.
    It seems that no matter how much evidence is presented, and no matter how many times the WHO repudiates their misinformation, Wessely and other members of the Wessely School refuse to accept it and they continue to insist that ME, which they include as part of CFS/ME, is a mental illness.
    It is the Wessely School ethos that underpins the MRC PACE Trial.
    As Dr Monica Greco, Senior Lecturer in the Department of Sociology, Goldsmiths College, University of London, suggests: ..are there ways in which the privilege accorded to aetiology may actually hinder the delivery of better care in many situations?..the immediate focus ontreatments often constitutes a knee?jerk reaction dictated by factors that have little to do with the best interest of the patient. Indeed, physical evidence or lack thereof, as supposedly proved by negative test results is often used to better dismiss patients and their concerns rather than vice?versa (Co?Cure ACT 12th September 2009).
    That this occurs in ME/CFS is beyond dispute, so the question requiring an answer is why is it occurring?
    It is a matter of record that Wessely School psychiatrists have close links to powerful medical and permanent health insurance companies such as UNUMProvident, which has been described as an outlaw company by California Insurance Commissioner John Garamendi see below. If it can be proven that CFS/ME is a mental disorder, then insurance payments to patients could be limited or even denied. Given the rise in the number of claims for ME/CFS, this is a not insignificant matter from the insurers perspective.

    extensive physical investigation that may then perpetuate the pattern of physical attribution (R Powell, R Dolan, S Wessely. J Psychsom Res 1990:34:6:665?667).
    It is this authors belief that the interactions of the attributional, behavioural and affective factors is responsible for both the initial presentation to a physician and the poor prognosis (Chronic fatigue and myalgia syndromes. Wessely S. In: Psychological Disorders in General Medical Settings. Ed: N Sartorius et al. Hogrefe & Huber, 1990).
    Suggestible patients with a tendency to somatize will continue to be found among sufferers from diseases with ill?defined symptomatology until doctors learn to deal with them more effectively (Simon Wessely. Psychological Medicine 1990:20:35?53).
    The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: The average doctor will see they are neurotic and he will often be disgusted with them (Wessely S. In: Psychological Disorders in General Medical Settings. Ed: N Sartorius et al. Hogrefe & Huber, 1990).
    Continuing attribution of all symptoms to a persistent virus preserves self?esteem (Butler S, Chalder T, Wessely S et al. JNNP 1991:54:153?158).
    The prognosis may depend on maladaptive coping strategies and the attitude of the medical profession (Wessely S. Pulse of Medicine 14th December 1991:58).
    Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validity.It is also beneficial to self?esteem by protecting the individual from guilt and blame. The germ has its own volition and cannot be controlled by the host. The victim of a germ infection is therefore blamelessMany patients become hypervigilant and over?sensitised to physical sensations.The behaviour of family and friends may inadvertently reinforce the sick role Fear of illness is an important part of (the disorder)the approach we favour is provided by professionals whose training and background is mental health (Simon Wessely, Trudie Chalder et al. In: Post?viral Fatigue Syndrome. Ed: Rachel Jenkins and James Mowbray. John Wiley & Sons, Chichester, 1991).
    Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role sympathy, time off work, benefits etc (Wessely S. Reviews in Medical Microbiology 1992:3:211?216).
    Studies usually find a high prevalence of psychiatric disorder among those with CFS, confirming that physicians are poor at detecting such disorders (Lewis G, Wessely S. Journal of Epidemiology and Community Health 1992:46:92?97).
    Most doctors in hospital practice will be familiar with patients who complain about a wide variety of symptoms but whose physical examination and investigations show no abnormality. (Such) symptoms have no anatomical or physiological basis.Patients with inexplicable physical symptoms aregenerally viewed as an unavoidable, untreatable and unattractive burden (Alcuin Wilkie, Simon Wessely. Brit J Hosp Med 1994:51:8:421?427).
    Wessely sees viral attribution as somatisation par excellence (Helen Cope, Anthony David, Anthony Mann. Journal of Psychosomatic Research 1994:38:2:89?98).
    The epidemiology of environmental illness is reminiscent of the difficulties encountered in distinguishing between the epidemiology of myalgic encephalomyelitis (ME), a belief, and chronic fatigue syndrome, an operationally?defined syndrome (note that the World Health Organisation does not regard ME as a belief but as a neurological disorder)These patient populations recruited from the environmental subculture are a subgroup of patients who can be expected to show unusually strong beliefs about the nature of their symptoms, associated with a high percentage of psychiatric disorderThese total allergy syndromes are akin to culture?bound syndromes afflicting modern developed societies where sufferers from unexplained symptoms no longer see themselves
    as possessed by devils or spirits but instead by gases, toxins and viruses (LM Howard, S Wessely. Clinical and Experimental Allergy 1995:25:503?514).
    Chronic fatigue may be better understood by focusing on perpetuating factors and the way in which they interact in self?perpetuating vicious circles of fatigue, behaviour, beliefs and disabilityThe perpetuating factors include inactivity, illness beliefs and fear about symptoms (and) symptom focusingCFS is dogged by unhelpful and inaccurate illness beliefs, reinforced by much ill?informed media coverage; they include fears and beliefs that CFS is caused by a persistent virus infection or immune disorder (Anthony J. Cleare, Simon C. Wessely. Update 1996:14th August: 61).
    The term ME may mislead patients into believing they have a serious and specific pathological processSeveral studies suggest that poor outcome is associated with social, psychological and cultural factorsWe have concerns about the dangers of labelling someone with an ill?defined condition which may be associated with unhelpful illness beliefsNo investigation should be performed to confirm the diagnosis. (Simon Wessely, Peter White, Leszek Borysiewicz [now Chief Executive of the MRC], Anthony David, Tim Peto et al. Report of a Joint Working Group of the Royal College of Physicians, Psychiatrists and General Practitioners. RSM (CR54), 1996.
    The clinical problem we address is the assessment and management of the patient with a belief that he/she has an illness such as CFS, CFIDS or METhe majority of patients seen in specialist clinics typically believe that their symptoms are the result of an organic disease processMany doctors believe the converse(Patients) beliefs are probable illness?maintaining factors and targets for therapeutic interventionmany patients receive financial benefits and payments which may be contingent upon their remaining unwellAn important task of treatment is to return responsibility to the patient for management and rehabilitation without inducing a sense of guilt, blame or culpability for his / her predicament (Sharpe M, Chalder T, Wessely S et al. General Hospital Psychiatry 1997:19:3:185?199).
    In a previous era, spirits and demons oppressed us. Although they have been replaced by our contemporary concern about invisible viruses, chemicals and toxins, the mechanisms of contagious fear remain the sameTo the majority of observers, including most professionals, these symptoms are indeed all in the mind (Editorial: Simon Wessely. NEJM 2000:342:2:129?130).
    The greater the number of symptoms and the greater the perceived disability, the more likely clinicians are to identify psychological, behavioural or social contributors to illnessIf the chronic fatigue syndrome did not exist, our current medical and social care systems might force us to invent it (Wessely S. Annals of Internal Medicine 2001:134:9S:838?843).
    It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering.One challenge arises when patients have named their condition in a way that leaves doctors uncomfortable, as occurred with chronic fatigue syndrome.It may seem that adopting the lay label (ME) reinforced the perceived disability. A compromise strategy is constructive labelling; it would mean treating chronic fatigue syndrome 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 officers report of the term CFS/ME reflects such a compromise, albeit an uneasy one (B Fischhoff, S Wessely. BMJ 2003:326:595?597).
    This paper proposes that well?intentioned actions by medical practitioners can exacerbate or maintain medically unexplained symptoms (MUS). This term is now used in preference to somatisation. The adoption of a label such as CFS affords the sufferer legitimacy in other words, it allows entry into the sick role. If sections of the media advocate an exclusively organic model, as has happened with CFS, the biomedical model may become firmly enshrined for patients and families at the expense of the psychosocial model (LA Page, S Wessely. JRSM 2003:96:223?227).

    However, as Crombez G et al point out: it is at worst presumptuous and potentially dangerous to infer the presence of other key features of somatisation from the mere presence of physical symptoms (PAIN: Epub ahead of print, 7th May 2009). They continue: Poorly constructed science that.over?simplifies complex constructs does not advance a field of enquirythe failure or absence of a biological account of pain is an insufficient reason to promote a psychological account. Crombez et al conclude, as so many others have previously concluded, that: The current operational use may unduly lead to a psychologisation of physical complaints.
    Also of interest is the observation of Goodheart and Lansing (Treating People With Chronic Disease: A Psychological Guide. American Psychological Association 1996: pp.98?99): Therapists may not use total denial very often, but many deny either a partial reality or the severity of illness. The denial serves as a defense against helplessness. Therapists are quite capable of constructing a wall of denial, which is evident when they ignore information about the disease and assume a psychosomatic origin, which they believe they can cure.
    In relation to ME/CFS, such observations seem to be disregarded by the Wessely School. Instead, their continued over?reliance on the concept of somatisation is nurtured by their insistence that there should be no investigations performed on ME/CFS patients other than very basic screening. Since no abnormalities are likely to emerge on routine screening tests, a challenge to their theory cannot be effectively mounted on the basis of abnormal test results in a clinical setting, so patients continue to suffer inappropriate dismissal of their symptoms.
    On the basis that what is not looked for will not be found, in her response to the 1998 Joint Royal Colleges Report on Organophosphates (CR67) with which members of the Wessely School were involved, the Countess of Mar asked: Why should the doctor and patient accept the limitations of scientific knowledge? Who is to say that their searches are likely to be futile? I simply ask whether we would have been able to cure TB, eradicate smallpox, prevent the infectious diseases of childhood or establish the link between asbestos and lung disease if the medical practitioners of the time had accepted the limitations of scientific knowledge. After all the evidence the working party heard and read, where is its natural curiosity? It repeatedly mentions that there is a lack of causality, yet it makes no recommendations for causal research. Is this becauseit does not wish to know? (Hansard [Lords]: 9th December 1998:1011?1024).
    It is notable that the Joint Royal Colleges Report on OPs made almost identical recommendations to those made two years earlier in the Joint Royal Colleges Report (CR54) on CFS: regarding diagnosis, physicians were warned against over?investigation which may bias the consultation towards a narrow physical orientation; regarding management, physicians were warned against multiple referrals from specialist to specialist and that the management plan does not need to presuppose a particular aetiology; regarding treatment, physicians were advised to use cognitive behavioural techniques to counteract beliefs and subsequent behaviours which may develop (and which may) serve to perpetuate (symptoms), with physicians being warned that treatment entails identifying and modifying illness beliefs, fears and anxieties that may prolong disability. Inevitably, symptom continuation was blamed on the patients attributions, and future research was to be on behavioural interventions. No mention was made of the known neurotoxicity of OPs.
    It is of significance that organophosphates have since been shown to cause reproducible alterations in gene regulation, especially in those genes associated with immune, neuronal and mitochondrial function (N Kausnik, ST Holgate and JR Kerr et al. J Clin Pathol 2005:58:826?832).
    The organophosphate issue is not the only major health issue about which the Wessely School have been comprehensively shown to be wrong; other examples are Gulf War Syndrome and the Camelford drinking water issue.
    Simon Wessely is on record more than once as denying the existence of Gulf War Syndrome (GWS, known in the US as Gulf War Illness). In their official report (Lancet 1999:353:169?178), Unwin, Hotopf, David and Wessely et al, despite having performed no clinical examination or laboratory investigations on the veterans,
    aberrant behaviour that is amenable to cognitive restructuring and exercise, a notion that the PACE Trial seems designed to support.
  3. Enid

    Enid Senior Member

    Many thanks Andrew - there are some other (links only) here on PR of Prof Hooper and Margaret Willams writings and dreadful history in the UK - nice to have this one in full. Just goes to show the tactics employed of all concerned in the latest attempt to discredit ME patients.

    Is this published - just wish all their writings were.
  4. AndrewB

    AndrewB Senior Member

    England, UK
  5. Enid

    Enid Senior Member

    Thanks Andrew, I never knew it was in print and have been taking good articles from their link - in the meantime. Now I have your link I've added to favourites to read in full. As you say essential reading. Best wishes.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    Thanks for this thread andrew. The whole illness belief thing i just dont understand. WHy would someone want to have ME or believe they have ME when most people dont recognise it or understand it and u have to really struggle to get any sort of disability for it. There are so many physical abnormalities found in cfs research that need to be available to GPs to test for. I know in australia that nk dysfunction test cant be done, only in research setting. its these sort of tests that doctors need to have available to help them diagnose ME, once this is being done then better treatments i think will become available.

  7. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi AndrewB, I consider Magical Medicine one of two books that are essential reading for anyone with ME, the other being Oslers Web. Bye, Alex
  8. AndrewB

    AndrewB Senior Member

    England, UK
    Oslers Web is definately my next book purchase.

    PS as a side note, my 'general specialist' was very flippent when i asked him what viruses had shown up im my blood.
    he said, and i quote him here ;

    "there are thousands of viruses and we cant possibly test you for all of them"

    which brought me to thinking, after the consultation alas, have i been tested for Epstein Barr ?
    my white cell count has been high for over a year, and is always higher when im very ill, like i am now.
    then i thought, well how many viruses are there that can cause someone to be bed ridden over night?
    Proff Hooper doesnt pull any punches, nor does he spare ME sufferers any bad news, or pretend he can
    cure us either, if only there were more, straight talking health professionals who DONT have links to
    insurance companies.
    ive not asked for any disability money from the govenment yet, but ive not worked for a year, so i'll need things
    like food soon lol.
    i laugh, but its actually a national disgrace, the DWP actually try and riggle out of helping seriously sick people.
    somebody somewhere with a lotta power has sat and thought
    "ok, we're not gonna cure or even treat this anytime soon, how can we avoid paying the sufferers a reasonable
    rate of sickness benefit, ah, call it a psychological disorder and rubbish it for 25 years"
    well i think the truth is dawning on the nation, many of my friends who actually work in the media werent aware of
    this condition, but they bloody well are now, and the desired effect that people like wessley were hoping for in this
    latest media nonsense in the UK hasnt gone to plan, people arent buying it, and im going to do my best to help
    raise awareness of the illness and of how stupid it is to call this an illness of the mind.
  9. slayadragon

    slayadragon Senior Member

    The point of testing for viruses is not to find out whether there's any virus in particular. It's to demonstrate that the immune system is not working properly, and thus not keeping ordinary viruses in check like a normal person's system would.

    EBV is not the cause of CFS. We test for it (and other viruses) because it doesn't come up on normal people's labs, but usually comes up (as reactivated IgG) on the labs of people who have CFS. If we're looking for biomarkers, this is one of them.

    This is not a hard concept, but many doctors seem not to have been introduced to it.

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