Dr. Bateman answers IOM questions from the community: Part 1
Clark Ellis brings us Part 1 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community ...
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Letter to UK government, WHO, worldwide press etc etc demanding Wesselys suspension

Discussion in 'XMRV Research and Replication Studies' started by flex, Jan 10, 2010.

  1. flex

    flex *****

    London area
    DRAFT LETTER NOW ON ITS OWN THREAD!!! http://forums.aboutmecfs.org/showthread.php?2516-Wessely-suspension-draft-letter-is-here!!!!!!!!!!

    Please help with letter campaign to bring wessely to justice
    Letter to UK government, WHO, BBC and worldwide press etc etc demanding Wesselys suspension and further money for biomedical testing

    I am intending on demanding Wesselys immediate suspension from all issues surrounding ME/CFS from the UK government as a public concern and human rights issue with as many signatures as possible from the worldwide ME community. There are 17million of us.

    The letters will be sent simultaniously to all major press organisations, medical councils and the WHO.

    The letter will be typed on line soon and available for download to be sent from anyone anywhere in the world. Once the letter is available for download it can be sent on a circular to multiple email recipients including all his superiors and deans of colleges etc.
    The first draft will head its own thread soon open to editing suggestions.



    The issue is going to be about Wessely his Psycobabble school and provable issues. I will keep out issues that he could contend are inflammatory.

    The point is a mass media, government, dept of health campaign is going to make his position untenable. Everyone around him will have to come down with him after we play divide and rule on them. They will have no choice but to point the finger at each other. We need to attract the attention of a really good investigative journalist, let them take the libel issues on with the backing of a large media company. We want people to be fighting over the story.

    We are in the right, on the side of truth!!

    The first draft will head its own thread within a few days open to editing suggestion.

    Can we do this?

    YES WE CAN!!!

    Thanks all.


    Letter to UK government, WHO, worldwide press etc etc demanding Wesselys suspension
  2. This is a good idea, thank you.

    Remember however: not to use the word CFS, or indeed CFS/ME or ME/CFS.

    1) CFS is an umbrella term that includes mental illness. (E.g. OXFORD CFS Criteria). Used by Wessely/Sharpe/White/Chalder/ etc
    2) CFS/ME is a dual coding description of two disease states (not allowed to dual code under the WHO), however it exists only in the UK.
    There is no such thing as CFS/ME or ME/CFS as a disease state - precisely due to the dual coding issue that is prohibited.

    ME is a neurological disease state, eroneously re-branded as 'CFS' by the Department of Health.

    These would be good things to remember if writing a letter.

    I also personally take great offence that the Department of Health have this following comment on their website which is (again) false.
    Not my opinion, but actually factually incorrect.

    Cut N' Paste now follows from Government website:

    Chronic Fatigue Syndrome or ME?

    ''Chronic fatigue syndrome (CFS) is the term often used and preferred by doctors. This is because in most cases the main symptom is chronic fatigue.
    Also, with CFS there is little evidence that inflammation of the brain and spinal cord occurs, as it does with ME. ME is thought to be too specific to cover all the symptoms.

    ME is often the preferred term of people who have CFS. This is because they feel ‘fatigue’ is too general, and does not reflect the severity and different types of fatigue.
    They also feel that even though fatigue occurs in most cases, it is not the only symptom people experience. ''

    OK? Bad enough. Now read Wessely's centre of knowledge for CFS at Kings in London - it's the reverse of the Government statement above.

    ''CFS has officially replaced the term M.E. (Myalgic Encephalomyelitis), because there is no consistent evidence for the swelling of nervous tissue that this name implies.''
    Vincent Deary, Psychologist.


    Physical Illness does appear to be present at the beginning of the majority of cases of Chronic Fatigue.''

    Having a viral infection certainly makes us fatigued, in some cases for up to three months after we first contracted it. So a virus can certainly seem to trigger a CF problem.

    Research from our group and others has suggested that some infections are more likely to trigger the illness than others - viral meningitis, glandular fever and Q fever for example, but so far there is no evidence that the virus is still there after the initial infection is over. Traces of the virus can, of course, often be found, but there is no evidence the virus continues to exert a long term influence.

    This is not HIV in which viral persistence continues in a harmful fashion. <---------------- WHAT!!!!!!!!!!!!!!

    Vincent Deary, Psychologist.
  3. flex

    flex *****

    London area
    Qiute right DysautonomiaXMRV, ME
    On this sight i use cross over terms for the non british members.
    The letter will cover all these deliberately misleading names.
    Please pass on the word.
  4. julius

    julius Watchoo lookin' at?

    hey flex,

    I just came across something that totally floored me. Maybe it could be useful to u in your fight. These are just copied and pasted from the Iatrogenesis article in wiki.

    "The terms iatrogenesis and iatrogenic artifact refer to inadvertent adverse effects or complications caused by or resulting from medical treatment or advice. In addition to harmful consequences of actions by physicians, iatrogenesis can also refer to actions by other healthcare professionals, such as psychologists[...]"

    "[...] 225,000 deaths per year constitutes the third leading cause of death in the United States, after deaths from heart disease and cancer. Also, there is a wide margin between these numbers of deaths and the next leading cause of death (cerebrovascular disease).

    "This totals 225,000 deaths per year from iatrogenic causes"

    "In psychology, iatrogenesis can occur due to misdiagnosis (including diagnosis with a false condition as was the case of hystero-epilepsy[3]). Conditions hypothesized to be partially or completely iatrogenic include bipolar disorder,[4] dissociative identity disorder,[3][5] fibromyalgia,[6] somatoform disorder,[7] chronic fatigue syndrome[...]"

    Given that cfs patients tend to die 25 yrs younger than healthy population, I think this might be a good addition to your argument against Weasely...(oops...Wessely)

    Just thinking...
  5. bullybeef

    bullybeef Senior Member

    North West, England, UK
    I sent the following email to the Daily Mail, the British newspaper, that recently asked its readers whether ME was real or not:

    I haven't heard anything and I doubt I will, but I hope I have planted a seed of doubt in their minds.
  6. V99

    V99 *****

    Great letter Bullybeef. Lets get them questioning their assumptions. :Sign Good Job:

    It really is good time to knock them on the head, with the truth about ME. Therefore I'm also going to send in a letter.
  7. flex

    flex *****

    London area
    The question " is ME a real disease or not" has been asked before. That time it was of GPs in, I believe a GPs publication. It was asked alongside "are bags under the eyes a real illness".

    The question was posed by none other than, himself, Simon Wessely. Wessely has a habit of paying for things to be published, just as he did fot the IC "study". I wonder if he had anything to do with the Daily Mail survey?
  8. Adam

    Adam *****

    Sheffield UK
    Brilliant letter. Really the press should be having a field day with this story. Not so much from the is Reno or London right about XMRV,which few people outside sufferers and their families care about, but from the angle you have implied to the Daily Misinformer, I mean Mail. You could get sick from it too. By intercourse, or just snogging, or God forbid a blood transfusion. Perhaps you should send the letter to a all the other papers. Perhaps David Cameron would put some pledge into the Tory party manifesto to win the CFS vote? Perhaps little green men will parachute into 10 Downing Street and demand that Gordon Brown sack the Weasel, Wesselly or better still, have him committed? Seriously ,great letter. Next stop The Daily Star!
  9. wornout

    wornout Guest

    I'm not sure I'm in a fog.
    maybe this could help
    Not sure If this has already been brought up.

    could the IC study been rushed to influence the following I found on ME Agenda Jan 20

    "DSM-V Somatic Symptoms Disorder Work Group presentation slides; draft due 10 February
    January 20, 2010 — meagenda
    DSM-V: APA now plan to publish draft proposals on 10 February;

    DSM-V Somatic Symptom Disorder (SSD) Work Group presentation slides

    Shortlink: http://wp.me/p5foE-2Fr

    The American Psychiatric Association (APA), publishers of the Diagnostic and Statistical Manual of Mental Disorders (DSM), plans to publish draft proposals for changes to its diagnostic categories on 10 February. [1]
  10. sproggle

    sproggle Jan

    Teesside, England UK
    Great letter. Maybe we should be educating all major UK papers and news agencies that XMRV is here in the UK?!

    All your points are relative (not refering to the poll of course)
    Surely such a major threat to the safety of the blood supply is a story in itself?

    I think I will focus my energies on writing some letters of my own...

    Thanks for the inspiration! :victory:


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