The CDC: ME, CFS, or idiopathic chronic fatigue?

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 17, 2006.

  1. tansy

    tansy New Member

    Presentation to the Chronic Fatigue Syndrome Advisory Committee
    U.S. Department of Health and Human Services
    Mary M. Schweitzer
    July 17, 2006

    Thank you for allowing me this time to speak.

    For ten years I have been coming to these meetings and asking the
    CDC to give just one press conference to the nation, letting everyone
    know (patients, family, employers, doctors) how very serious the disease
    called Chronic Fatigue Syndrome really is. For roughly the same period
    of time I have tried to persuade Dr. Reeves that going to the public
    would do more to educate family doctors than all of the effort that
    goes into formal education campaigns limited to those in the medical
    profession willing or able to participate.

    Be careful what you wish for.

    In June of this year, the CDC in partnership with the CFIDS Association
    of America began a $4 million ad campaign to tell the public about
    Chronic Fatigue Syndrome. I was stunned to find it was based on the
    claim that 4 million Americans suffered from CFS.

    FOUR MILLION!

    [Note: Since Dr. Reeves has not even submitted the study upon
    which the 4 million is based, he refused to confirm this number,
    although he had told the CFIDS Association to go ahead with the
    number in the campaign. It will be a year at least until this sees
    publication, which means it will be a year at least until Dr. Reeves
    formally acknowledges it. But it doesn't matter. It is out now.]

    In 1998, using the Wichita study, CDC estimated that 500,000
    Americans had CFS. Eight years later, we are expected to believe
    the number of patients had increased eight-fold? That means
    that every two years, the incidence of CFS doubled?

    The current best estimate - as CDC acknowledged - would be to
    take the Jason estimate and use it on today's population, which
    would give roughtly 900,000-1 million patients. That still means an
    unexplained four-fold increase in the estimate.

    There is only one way this could have happened, and we
    have really had the hints all along. Dr. Reeves, and the CDC,
    have abandoned the Fukuda research definition of CFS and created
    a new one secretly.

    The CDC s website for information on CFS no longer lists Fukuda as
    the standard for research on the illness. The revised Fukuda definition
    remains as a clinical definition but under publications, there is now
    a link to case definitions. They are listed in chronological order.
    The last (presumably the one that is now in use), is an article called
    Factor analysis of symptoms among subjects with unexplained
    chronic fatigue: what can we learn about chronic fatigue syndrome?
    by Nisenbaum, Reyes, Unger and Reeves.

    It was published in the Journal of Psychosomatic Research in 2004.
    The conclusion? CFS symptomatology is a multidimensional
    phenomenon overlapping with other unexplained fatiguing syndromes
    and this must be considered in CFS research.

    What are "unexplained fatiguing syndromes"?

    Many have complained that the Fukuda definition leaves researchers
    (and clinicians) with far too heterogeneous (disparate) a population.
    Instead of working towards a more homogeneous grouping, CDC
    has headed in the opposite direction muddying the waters even more.

    How had this happened?

    In 1998, using the accepted Fukuda definition for CFS, Dr. William
    Reeves of the CDC announced that 500,000 Americans had CFS.
    One year later, Lenny Jason and others at DePaul University published
    a scholarly article in the Annals of Internal Medicine that gave a
    higher estimate: 800,000 Americans.

    I have always assumed that one of the reasons Jason's figure was
    60 percent higher than Reeves was that Reeves had misspecified
    his model [i.e., statistically and scientifically it was incorrect.]

    During the data collection process, Reeves omitted from
    the beginning any patients who had ever been diagnosed with
    depression, patients who were medically obese, and patients who
    had diabetes or thyroid problems, whether or not they were
    undergoing treatment.

    We already knew that two of those factors thyroid problems and
    obesity correlated with having CFS. That is, not everyone with
    CFS had either but the percentage of CFS patients with those
    problems was far greater than in the normal population. As for
    depression, many patients were misdiagnosed with depression
    before the CFS diagnosis and others had secondary depression
    because of the limitations of the disease.

    It would have been easy to have included those patients in the
    studies, simply by adding variables for the conditions. But Dr.
    Reeves refused saying in 1996 that he did not want to lose
    degrees of freedom a statistical term that does not apply to
    a data set and to the extent it applies to a model, it is only a
    problem when you are working with a small sample, such as 50
    patients. Here we were talking about thousands of patients.
    There was no statistical (or scientific) reason to omit variables.

    But because the variables were omitted, the ensuing demographic
    model was misspecified hence the difference in the results. Many
    patients with severe cases of CFS were left out entirely. A second
    problem with those particular variables was that obesity and
    diabetes are far more common among the poor and minority groups.
    By omitting patients with those conditions, instead of including them
    with a variable, the data set was also biased against the poor, and
    minorities. The DePaul study showed that those of all incomes and
    ethnic groups were equally subject to the disease; Reeves study
    was biased towards whites.

    Eventually the CDC did change its estimate to be closer to Jason s.
    A year or so ago, I noticed that 900,000 suddenly appeared on the
    website as the official estimate of the number of CFS patients in the
    U.S. However, every article Reeves has published has used the
    Wichita group, drawn from the misspecified model.

    Dr. Reeves' more recent research has focused on creating
    questionnaires that could be used to diagnose CFS, as well as the
    intensity of the illness. [ Psychometric properties of the CDC
    symptom inventory for the assessment of chronic fatigue
    syndrome, Nisenbaum, Heim, Jones, Unger and Reeves.
    Population Health Metrics, 2005]. He never proved that they
    could diagnose CFS to the contrary, using these questionnaires,
    he pulled in so many different populations that he began saying
    that there was no difference at all between Gulf War Syndrome
    and CFS, and many other fatiguing illnesses.

    Not by coincidence, two of the fatigue questionnaires relied on
    similar questionnaires developed by Simon Wessely [et al] from
    the Journal of Psychosomatic Research [1993, 2004]

    Then last April Dr. Reeves announced the results of the CDC s
    genome study. The results were a bit premature and as it turns
    out, from a scientific standpoint hardly robust. The scientists all
    remarked on the degree of heterogeneity in the population.

    When Dr. Reeves gave his report on the genome study, he
    announced to my surprise that, People with CFS do not have
    impairment in cognitive function, and Sleep abnormalities are
    not associated with CFS.

    At that moment, I knew that the majority of people in this data set
    did not have the same disease that I did. What was going on here?

    Dr. Reeves is no longer using Fukuda. He is using his own method
    for establishing a population on which to base the world s research
    on Chronic Fatigue Syndrome. And he has been telling us this all
    along in his own way.

    The new definition was announced in a backwards fashion. We
    know that the patients in the genome study were chosen from the
    Wichita study but others also were given the questionnaires that
    Dr. Reeves has created to define Chronic Fatigue.

    As I pointed out last fall, these same questionnaires proved to be
    disastrous failures in diagnosing patients with CFS or charting
    improvement when used in the Ampligen double-blind studies.

    I have never been a fan of the Fukuda definition, mainly because
    cognitive dysfunction and post-exertional fatigue are the hallmarks
    of this disease, and it is possible to be diagnosed with CFS-Fukuda
    without having either. Nevertheless, there was an effort to include
    physical symptoms.

    But Dr. Reeves told us in April that patients with CFS do not have
    cognitive dysfunction. (They are just tired.) Nor did they have
    problems with sleep. At least, not anything that would distinguish
    them from other patients with "chronic fatigue."

    **He had just announced to us all that two of the eight possible
    physical symptoms of CFS according to Fukuda were meaningless.
    And in doing so, he had told us he was now using a different
    definition for CFS.**

    And we were silent.

    Thus, we come to where we started. Chronic Fatigue Syndrome,
    a disease name and definition created to replace the misdiagnosis
    of Chronic Epstein-Barr Syndrome that was first applied to the victims
    of the Incline Village, Nevada, outbreak, has clearly outlived any
    possible usefulness to scientists, doctors, or patients. There are
    too many ways to define this illness.

    We began with the Holmes definition. Then we had the Fukuda
    definition. Soon there was the Wessely-Sharpe definition (roughly
    comparable to the CDC s old definition of chronic fatigue). In
    Australia, there was the Lloyd-Hickey definition (that patients
    had once been sick and then forgot how to be well), and now
    we have the Reeves definition as it turns out, quite similar to
    Wessely s. Or perhaps we should just call it chronic fatigue -
    which is not chronic fatigue syndrome.

    To use the phrase I have seen most often in referring to the
    Australian and English research on "CFS", Dr. Reeves is now
    using a biopsychosocial model of the disease.

    Instead of reducing the degree of heterogeneity that was a
    problem in CFS-Fukuda Reeves has dramatically increased it.
    No wonder the scientists in the genome study were so puzzled.

    The result of the Wessely definition in England has been studies
    that prove that graded exercises (GET) and cognitive behavior
    therapy (CBT) cure chronic fatigue syndrome. Wessely and
    Sharpe were able to accomplish this by diluting the population
    pool so much that no more than 8 percent of the patients in the
    study actually had CFS-Fukuda and probably fewer had Myalgic
    Encephalomyelitis, the real name of the disease that occurred at
    Incline Village, Nevada and the disease that I have. In fact, the
    few patients in the study with severe cases of Myalgic
    Encephalomyelitis were unable to complete the study (a piece of
    information conveniently left out by Dr. Sharpe at the time, but
    later confirmed by the 25-percenters in England).

    We can expect similar results in the United States.

    So let me give you just one example of the consequences of the
    Wessely-Reeves version of CFS.

    Last year, a 32-year-old woman who had been ill with ME-CFS for
    years lost the ability to swallow. Because the disease is seen as
    psychosomatic in England, she was taken to a mental hospital
    where they tried to persuade her to eat (being locked in isolation
    was one of the methods of persuasion). She came home two weeks
    later, with the psychiatrists all expressing puzzlement as to why
    she would not cooperate. Sophia asked her mother to find a
    doctor who would not send her back to the psychiatrists again,
    but her mother could not.

    Unable to swallow, Sophia finally lost her battle to live.

    There was a formal inquest, and the conclusion was that Sophia
    died of acute aneuric renal failure due to dehydration arising as
    a result of CFS. The neuro-pathologist at the inquest reported
    that there was clear inflammation of the dorsal root ganglia. The
    doctors at the inquest could not decide whether to say M.E. or CFS
    but concluded that CFS was the modern term for M.E., so the
    conclusion was that she died of CFS.

    She did die of CFS. She died of the misunderstandings caused by
    the biopsychosocial (or psychosomatic) school headed by Simon
    Wessely. Had she been diagnosed with M.E. (or even CFS-Fukuda),
    her inability to swallow would have been taken not as a sign of
    refusing to work towards her own recovery but what it was:
    the dramatic result of years of severe illness. She would have
    been placed on a feeding tube, and she would be alive today.

    Dr. Reeves already stated in the last meeting that he thought trauma
    in childhood could be a probable cause of CFS later in life (because it
    would reduce the body s immune defenses). I hate to think what the
    results of that will be when school systems start applying it to
    parents of sick children.

    But I can now see why he introduced the new Reeves definition of
    CFS in secret. It is not a secret any more, and we are all left with
    the consequences. I ask this committee to face them head-on.

    I ask once again that we go back to the real disease definition
    Myalgic Encephalomyelitis. We can also use of the Canadian
    Consensus document for ME-CFS, so clinicians can learn how
    to diagnose and treat this puzzling illness.

    Jumbling everything together into the vague useless category
    of fatiguing illnesses will not help anybody get well. All it can
    do is please the insurance lobbyists on K-Street, and a government
    wholly lacking in compassion for those less fortunate.

    The job of the CDC is to understand the current threat of serious
    illness and communicate that threat to the citizens of the United
    States. Dr. Reeves has failed in that mission. I can only hope that
    this committee will do better.

    Mary M. Schweitzer, Ph.D.
    Presentation to the Chronic Fatigue Syndrome Advisory Committee
    U.S. Department of Health and Human Services
    July 17, 2006


    [This Message was Edited on 07/18/2006]
  2. fibro15

    fibro15 New Member

  3. Marta608

    Marta608 Member

    I agree with Lamotta.

    Plus you simply cannot tell me that there are still only the oft-repeated-since-the-1980s 800,000 people with CFS. The new numbers sound more accurate to me.

    It's just more confusion in an already confusing illness.

    Marta
  4. karinaxx

    karinaxx New Member

    it fits right into this discussion.
    the whole article can be read at http://www.mefmaction.net/default.aspx?page=persecutionofpatientshooper

    i am having a hard time believing this cruelty can exist, but this case report is by far not the only one. Dr. Bell has reported on numerous similar cases.
    please read the whole report, especially at the end of this post a case report of a cruely mistreated child with ME , by Wesley and his consortium.

    What is the “Wessely School”?

    UK policy concerning ME is based on the intransigent beliefs of a group of psychiatrists led by Simon Wessely, for years an adviser to various Government Departments including the Ministry of Defence and who is now Professor of Epidemiological and Liaison Psychiatry at Guy’s, King’s and St Thomas’ Medical School (GKT) based at King’s College Hospital (KCH) and at The Institute of Psychiatry (IOP); he is also Director of the Chronic Fatigue Syndrome Research Unit and of the Gulf War Illnesses Research Unit, both at King’s. Other leading members include psychiatrists Michael Sharpe (formerly of Oxford and now at Edinburgh, where Alan Carson now collaborates with him); Peter White (of St Bartholomew’s Hospital, London); Anthony David, Anthony Cleare, Stephen Reid and Matthew Hotopf of The IOP and KCH and Richard Mayou, Keith Hawton and Christopher Bass of Oxford. Trudie Chalder, a former Registered Mental Nurse, works with Wessely and her name often appears on their publications and in funding applications. Other supporters include Elena Garralda, Professor of Child and Adolescent Psychiatry at St Mary’s, London; Tony Pelosi of Glasgow; Stephen Lawrie of Edinburgh; Alison Weardon and Leonie Ridsdale, Senior Lecturer in General Practice at Guy’s, King’s and St Thomas’, London.



    The stated aim of Simon Wessely is to “eradicate” ME from the medical lexicon and to re-classify CFS as a mental disorder which does not need biomedical research or explanation and which is to be managed by a version of cognitive behavioural therapy which he claims to have developed. His own commercial involvement in such a management regime has been established (see below).



    The certainty of these psychiatrists that they are right whilst other researchers of international repute who disagree with them are wrong, their power and their influence are destroying countless lives, yet they continue to fly unscathed even in the face of substantial evidence that calls their views into question. Wessely School psychiatrists have built their careers and reputations on denying the physical nature of ME/CFS, with the result that untold numbers of chronically and seriously ill patients are bullied, derided, threatened and driven to suicide by being told that they are not physically ill but are suffering from “aberrant illness beliefs”.



    The constant theme running through the work of this group of psychiatrists is that CFS is a somatoform disorder and that factors such as female gender, too much focus on normal bodily sensations, specific personality traits, avoidance behaviour, learned helplessness, faulty thought processes, lack of motivation, inadequate coping strategies, interpersonal conditioning and contagious sociological hysteria play an important role in the perpetuation of the disorder.



    Wessely School psychiatrists have been described in the eBMJ (N Portman, 3rd December 2003) as “a small clique of undemocratic, unaccountable, self-serving psychiatrists who have managed to monopolise most of the research funding in this field and, thanks to their prejudices, have been its downfall ever since”.



    Without doubt, the influence of Simon Wessely has resulted in a cascade of horrors which most people in the UK do not know about and when they do, they find scarcely believable.



    It has taken 25 years for the notorious Professor Sir Roy Meadow to be exposed and discredited as “world expert” on Munchausen’s Syndrome by Proxy, whose views Lord Howe described as “one of the most pernicious and ill-founded theories to have gained currency in childcare and social services in the past 10 to 15 years. It is a theory without science. It rests instead on the assertions of its inventor”. The downfall of Meadow, who is finally to appear before the Professional Conduct Committee of the General Medical Council, serves to prove that a so-called “medical expert” whose views apparently portray incontrovertible medical judgment and certainty may, in fact, be wrong, but the damage done cannot be undone. So it is with ME. It must not be allowed to take 25 years before the views of the Wessely School on ME are subjected to similarly

    rigorous public examination and exposure.



    Many doctors and their non-medical managers still have misguided ideas about medical negligence and believe that doing one’s best is all that matters or is required. This is not so in law and the legal profession is about to become less deferential to the medical profession.

    (http://bmj.bmjjournals.com/cgi/eletters.327/7424/1118#41799)



    The Opinion of an eminent Queen’s Counsel has been obtained

    A leading QC and member of the House of Lords was asked for an Opinion on the Wessely School approach to ME: that Opinion is unequivocal; it states: “On the document you have sent me there is an overwhelming case for the setting up of an immediate independent investigation as to whether the nature, cause and treatment of ME as considered by the Wessely School is acceptable or consistent with good and safe medical practice. There is substantial doubt as to whether such could be the case. A formal request should be made to set up an enquiry. It is essential that a reputable firm of solicitors should be instructed”.



    Are psychiatrists cruel?

    Based in New York, Dr John Diamond is a founding member of The Royal College of Psychiatrists. In an extract from his recent book (Facets of a Diamond 2003) in the October 2003 issue of the journal “What Doctors Don’t Tell You”, Diamond says “I am no longer a psychiatrist. I renounce it because I believe cruelty is at the core of the profession (and) I believe that there is something inherent in the profession that tends to bring out any cruelty lurking within. I have long wondered why this profession --- which ought to be so compassionate – has, it seems to me, turned its back on humanity”.



    A recent article in The Sunday Telegraph (“Trust me, I’m a psychopath” by Alasdair Palmer, 30th November 2003) quotes Dr Robert Hare, a Canadian professor of psychology, as saying “The psychiatric profession and its associates are very reluctant to admit they are wrong or that they have made a mistake”.



    Yet psychiatrists have powerful positions of control and ever more credibility in so many areas: Simon Wessely and Anthony David were funded by the US Pentagon (and came to the conclusion that Gulf War Syndrome does not exist) and Wessely is involved with advising NATO. Add to this the errors of mis-diagnosis made by psychiatrists in the past (Parkinson’s Disease, multiple sclerosis, epilepsy, diabetes, thyrotoxicosis and many other disorders with a physical causation have all been asserted by psychiatrists to be “mental” disorders until medical science revealed their true aetiology) and one has a right to despair at

    the current situation facing ME patients.



    Two illustrations of the implementation of Wessely School policy

    Out of the many known cases of patients being persecuted as a result of the implementation of Wessely’s policy on ME, just two are mentioned here: details of many others have been put before the Chief Medical Officer, who has made it known that he receives more letters about ME than on any other medical issue. There are numerous records relating to this matter in Hansard (both Lords and Commons) and on 23rd November 1999, the House of Commons Select Committee on Health produced its Report looking at adverse clinical incidents, unexpectedly poor outcomes to treatment, failures in medical care and poorly-performing

    doctors: that Committee took representations from at least eight people about ME.



    1. The case of Ean Proctor

    In 1988, a formerly healthy 12 year old boy named Ean Proctor from the Isle of Man had been suffering from ME since the autumn of 1986; his symptoms included total exhaustion, feeling extremely ill, abdominal pain, persistent nausea, drenching sweats, headaches, recurrent sore throat, heightened sensitivity to noise and light and loss of balance; he was also dragging his right leg. In 1987 his condition had rapidly deteriorated; he had gradually (not suddenly as may occur in hysterical disorders) lost his speech and was almost completely paralysed (which lasted for two years). He had been seen by Dr Morgan-Hughes, a senior consultant neurologist at the National Hospital in London, who had reaffirmed the diagnosis of ME and advised the parents that ME patients usually respond poorly to exercise until their muscle strength begins to improve; he also advised that drugs could make the situation worse.



    Although he did not obtain his MRCPsych until 1986, during one visit by the Proctors to the National Hospital in 1988, Wessely (then a Senior Registrar in Psychiatry) entered the room and asked Ean’s parents if he could become involved in his case; desperate for any help, they readily agreed. Wessely soon informed them that children do not get ME, and unknown to them, on 3 June 1988 he wrote to the Principal Social Worker at Douglas, Isle of Man (Mrs Jean Manson) that “Ean presented with a history of an ability (sic) to use any muscle group which amounted to a paraplegia, together with elective mutatism (sic). I did not perform a physical examination but was told that there was no evidence of any physical pathology…I was in no doubt that the primary problem was psychiatric (and) that his apparent illness was out of all proportion to the original cause. I feel that Ean’s parents are very over involved in his care. I have considerable experience in the subject of ‘myalgic encephalomyelitis’ and am absolutely certain that it did not apply to Ean. I feel that Ean needs a long period of rehabilitation (which) will involve separation from his parents, providing an escape from his “ill” world. For this reason, I support the application made by your department for wardship”.



    On 10 June 1988 Wessely provided another report on Ean Proctor for Messrs Simcocks & Co, Solicitors for the Child Care Department on the Isle of Man. Although Wessely had never once interviewed or examined the child, he wrote “I did not order any investigations….Ean cannot be suffering from any primary organic illness, be it myalgic encephalomyelitis or any other. Ean has a primary psychological illness causing him to become mute and immobile. Ean requires skilled rehabilitation to regain lost function. I therefore support the efforts being made to ensure Ean receives appropriate treatment”. Under his signature, Wessely wrote “Approved under Section 12, Mental Health Act 1983”.



    In that same month (June 1988), without ever having spoken to his parents, social workers supported by psychiatrists and armed with a Court Order specially signed by a magistrate on a Sunday, removed the child under police presence from his distraught and disbelieving parents and placed him into “care” because psychiatrists believed his illness was psychological and was being maintained by an “over-protective mother”. Everything possible was done to censor communication between the child and his parents, who did not even know if their son knew why they were not allowed to visit him.



    In this “care”, the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool. The terrified child was also dragged out of the hospital ward and taken on a ghost train because psychiatrists were determined to prove that he could speak and they believed he would cry out in fear and panic and this would prove them right. Another part of this “care” included keeping the boy alone in a side-ward and leaving him intentionally unattended for over seven hours at a time with no means of communication because the call bell had been deliberately disconnected. The side-ward was next to the lavatories and the staff believed he would take himself to the lavatory when he was desperate enough. He was unable to do so and wet himself but was left for many hours at a time sitting in urine-soaked clothes in a wet chair. Another part of the “care” involved the child being raced in his wheelchair up and down corridors by a male nurse who would stop abruptly without warning, supposedly to make the boy hold on to the chair sides to prevent himself from being tipped out; he was unable to do so and was projected out of the wheelchair onto the floor, which on one occasion resulted in injury to his back. This was regarded as a huge joke by the staff.



    In a further medical report dated 5th August 1988 for Messrs Simcocks, Wessely expressed a diametric opinion from that of Dr Morgan-Hughes, writing: “ A label does not matter so long as the correct treatment is instituted. It may assist the Court to point out that I am the co-author of several scientific papers concerning the topic of “ME”….I have considerable experience of both (it) and child and adult psychiatry (and) submit that mutism cannot occur (in ME). I disagree that active rehabilitation should wait until recovery has taken place, and submit that recovery will not occur until such rehabilitation has commenced……..it may help the Court to emphasise that…active management, which takes both a physical and psychological approach, is the most successful treatment available. It is now in everyone’s interests that rehabilitation proceeds as quickly as possible. I am sure that everyone, including Ean, is now anxious for a way out of this dilemma with dignity”.



    Ean Proctor was kept in “care” and away from his parents for over five months.



    Although this took place in 1988, such brutality is still happening in the UK: the continued barbaric “treatment” of sick children by certain psychiatrists who profess to specialise in ME was the subject of a Panorama programme transmitted on 8th November 1999 and was profoundly disturbing (a videotape recording is available). Nothing seems to have been learnt from the appalling case of Ean Proctor and there is no question that children with ME continue to be forcibly removed from their parents and home; this issue was raised by Dr Nigel Speight, a consultant paediatrician at the University Hospital of North Durham with 20

    years experience of children with ME, who in April 1999 reported to the Chief Medical Officer’s Working Group on “CFS/ME” that the frequency of psychiatrists diagnosing the parents of children with ME as having Munchausen’s Syndrome by Proxy now amounted to an epidemic. Jane Colby, Executive Director of The Young ME Sufferers Trust (TYMES Trust) says “To have your sick child taken from you, to be suspected of damaging them yourself, just when they most need your care, is an appalling experience”.





  5. tansy

    tansy New Member

    The cruelty described here is just the tip of the iceberg. Many PWME in the UK have been treated in an appalling way, they cannot even get other health issues investigated and treated. PWME being treated more like criminals than people with a severe and disabling illness, the Wessely school refer to PWME in a derogatory manner - scroungers, malingerers, having a need for a sickness role and the like.

    ME, CFS, GWS are on the hit list for both state and insurance disability and sickness payments, they want to get the numbers receiving these payments down.

    Parents live in dread of having their children taken into care and many PWME are being abused and/or neglected. There is a NHS (National Health Service) patients bill of rights, but it would seem PWME, PWCFS, PWGWS, PWOPP etc are excluded from that protection.

    The CDC keep referring to the Wessely School, so it's no surprise they too have diluted the diagnostic criteria. All those who are having difficulties with insurance, including UNUM, can blame the Wessely School; it's through the insurance industry that they were able to gain so much influence.

    Patient groups world wide are campaigning to have the Canadian Guidelines adopted and used as the basis for investigations, diagnosis and treatments. There is good reason for this; it would put an end to all the myths and misinformation.

    The CDC funded research demonstrates that the symptoms patients report are real, and I accept that's a good thing. But since the CDC's criteria is so wide now, and similar to the Oxford Criteria which the Wessely School created, it can hardly be seen as a real step forward in the understanding of ME or CFIDS.

    Prof Malcolm Hooper, who has studied autism, GWS, ME and CFS recognises the overlaps and the clear distinctions. He quotes ME as a neurological illness, just as the WHO has in their neuroligcal section, he talks of CFS as being different.

    I hate the name CFS, it's belittling and trivialises an illness which can be fatal or leave the most severely affected unable to breath, move, speak or eat unassisted. Paralysis is not uncommon. These problems are not due to fatigue, anxiety states, or generalised debility; they are neurological.
    [This Message was Edited on 07/18/2006]
  6. Marta608

    Marta608 Member

    I agree that we need honest, realistic numbers but my criticism is with the oft-printed, long-term 800,000 count. I just can't believe we could go from the 1980's to now without a substantial increase in patients of this illness. Perhaps the 800,000 was premature when used originally.

    Marta
  7. springrose22

    springrose22 New Member

    Thanks for posting, very scarry stuff, though. Wessley sounds scarry. Thank goodness for Dr. Schweitzer, and others like her. The Canadian Guidelines are great. Marie
  8. slowdreamer

    slowdreamer New Member

    I have a very good article by Byron Hyde in which he took a so called cohort group of Cfs Sufferers and really discovered all manner of other disease states. His clarity and humour were a relief..I think dwelling on this stuff is very bad for us and I have already blown up on the board when simeone posted an article reflecting the views of these shonky psychiatrists. i just hope that with more hi tech instruments they will be able to deemphasise the speculative projections of the shrinks..They are just reflecting their own mindset and training are they not??
    Can someone tell me how to post an article on this site. I have a scanner.Thanks