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Simon Wessely. XMRV. Discussion.

Discussion in 'XMRV Research and Replication Studies' started by condra, Nov 25, 2009.

  1. condra

    condra

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    Hi everyone.

    A couple of weeks ago, I emailed Professor Simon Wessely of Kings College London, asking him for a response to the XMRV breakthrough in Nevada.

    I pasted his reply here, but he requested that I not publish his words without permission. In summary though, he said that he found the news fascinating, but didn't expect other studies to replicate the results.

    The thread ended up going off topic, and some heated argument ensued, so at the request of Koan, I've started this thread where we can hopefully discuss Professor Simon Wessely in relation to the XMRV breakthrough.

    The WPI findings in Reno offer some of the most compelling evidence yet that ME/CFS is an organic condition, and that the psychiatric paradigm is redundant.

    This is a very emotive subject for some people, because Professor Simon Wessely, a proponent of the psychiatric paradigm, is one of the major players in the world of ME/CFS.

    I would ask that people please be objective, brief, diplomatic and respectful, in the interest of keeping the thread coherent and useful.

    ____________

    To get started, I would be interested in peoples views on some of the following questions:

    What has the breakthrough in Reno done for Professor Simon Wesselys reputation and career?

    Simon Wessely seems to be "digging his heels in" somewhat. What sort of evidence or breakthrough will be needed to convince him that ME/CFS is not a psychiatric condition?

    Do the findings in Reno explode the psychiatric paradigm or is there room for compromise?

    Thanks for anyone who contributes.
  2. Esther12

    Esther12 Senior Member

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    What has the breakthrough in Reno done for Professor Simon Wesselys reputation and career?

    Not much. He remains one of the go-to guys for a CFS quote, and is a respected authority on the matter.

    Simon Wessely seems to be "digging his heels in" somewhat. What sort of evidence or breakthrough will be needed to convince him that ME/CFS is not a psychiatric condition?

    I don't think any evidence will. They'll claim there's a 'psychological component', and that CBT etc is still a useful way of helping people deal with CFS; which is probably true for CFS and most other chronic health problems, and will allow them to justify their earlier stances.

    Do the findings in Reno explode the psychiatric paradigm or is there room for compromise?

    The evidence from Reno isn't clear enough yet.

    I am sure that a lot of the claims made by the Wessely school are just bigoted quackery, but I'm not sure that CFS does not involve a significant, or even primary, psychological element for many people. A lot of the psychological research surrounding CFS is drivel, but until we have a clear understanding of (and hopefully treatment for) a purely pysical cause, I think it's worth being open to possible psychological causes.
  3. Robin

    Robin Guest

    Simon Wessely seems to be "digging his heels in" somewhat. What sort of evidence or breakthrough will be needed to convince him that ME/CFS is not a psychiatric condition?

    If causation can be proven, by correlating either active infection or a related immunological marker severity with symptoms severity, he should concede that at least some of the patients he sees are the victims of infection. An animal model would help, so would showing how and why XRMV causes CFS in some people and not others, and certainly a double blind RTC of a successful anti-retroviral treatment would be the icing on the cake.

    I don't think Simon Wessely believes CFS is a valid Psychiatric diagnosis (like Schizophrenia or OCD.) From what I've read he puts it more in the functional illness or psychological category. He theorizes that CFS starts with a physical trigger such as a virus, and that symptoms persists because a psychological perception of illness that is reinforced physically by behavior and lifestyle (ie being sedentary ----> deconditioning -----> illness perception.) Thus, graded exercise would, in Wessely's mind, gently coach the body back into shape while CBT would convince the patient that there is no underly physical illness.

    I'm not sure why Wessely has not considered that the triggering event he does believe in wouldn't persist over time, why he's overlooked the vast body of research pointing out serious physical abnormalities in CFS, or why so many people in the GET/CBT studies don't improve. But, I'm no Wessely expert!

    Do the findings in Reno explode the psychiatric paradigm or is there room for compromise?

    As a patient, there is no psychological paradigm for me! It's too soon to say, but if XMRV turns out to be a conclusive cause of CFS, it would preclude psychological cause of illness for any reasonable researcher. Wessely, too (I hope.)
  4. Esther12

    Esther12 Senior Member

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    Coincidentally (or maybe not!) my brother works with the CAB, and was just dealing with someone with CFS who's being terribly treated by UNUM, with them claiming he should have got better after six months, and as he has not, they will no longer cover him. Really crazy stuff.
  5. ramakentesh

    ramakentesh Senior Member

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    Ive never understood this paradigm

    Even without the XMRV surely there is enough evidence available already that suggests that CFS is a physical illness.
    Get any CFS patient on a tilt table test and in most cases some sort of abnormality will be found. Measure levels of standing norepinephrine and this may be indicative. Local blood flow abnormalities are now commonly found.
    Immune system abnormalities are also often found.
    CFS is often found to be co-morbid with other conditions - auto inflammatory illnesses, systemic illnesses etc.
    There is obviously a vested interest in trying to keep CFS as a psycho-somatic illness. Becuase there is no one unifying theory on CFS it keeps the door open for speculative science.
  6. Alice Band

    Alice Band PWME - ME by Ramsay

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    Would it be OK to widen this discussion to include the other "Wessely School" doctors in the UK?

    What has happened in the past here, is if there is anything pro-physical about ME that appears in a medical journal, TV or newspaper that they cannot immediately silence or suppress, they tend to launch a counter-attack by either manufacturing new stories and use a slightly different angle to get it into the press or through an editorial type comment in a journal, GP magazine or similar.

    It may takes months for this to occur. It could be SW or it could be another member of the group.

    My big concern right now isn't SW,

    It is Professor Peter White from Barts and the publication of the PACE trial probably next year.

    http://www.pacetrial.org/links.html
  7. Alice Band

    Alice Band PWME - ME by Ramsay

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    From one of the ME charities in the UK it was said that the XMRV finding would do nothing to stop the Psych lobby here as they would also argue virus involvement in schizophrenia etc.

    also

    I was at the UK APPG inquiry into ME that was held at the House of Commons. One of the people from the House of Lord's (Lord Turnberg) spoke about Dr Kerr's Gene Expression work. He said that the inquiry that Prof Trudy Chalder (colleague of Prof White's) had said that CBT could "cure" the gene expression difference.

    Therefore they will argue that CBT is still "curative" of whatever is discovered or theorised as a cause will have the same answer. Virus, no problem, CBT is the answer.
  8. Min

    Min Senior Member

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    Simon Wessely works for UNUM and PRISMA.

    Peter White works for the insurance firm Swiss Re


    Alice is right, the PACE and the FINE trials are going to do us a huge disservice by claiming great success for treating whatever illness it is they are looking at using the Oxford criteria to select patients (it's certainly not M.E./CFS as defined by the WHO). The FINE trials are being supervised by a psychologist specialising in hypochondria.
  9. annunziata

    annunziata Senior Member

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    Ramakentesh, my sentiments exactly. My own doctor has been shaking her head at the idea that it's news that the disease is real and organic. (Not that the XMRV study isn't huge news.)

    I'm so interested that you mentioned the norepi levels. My doctor was doing a study on CFS and abnormalities in catecholamine neurotransmitters when I first went to her. My norepinephrine levels surged to 17 x normal from the effort of going from a supine posture to standing. It was the first data that bore out what I had been saying, that movements that had been effortless had become very hard.

    Thanks for bringing those up, I don't see them mentioned very often.
  10. Min

    Min Senior Member

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    In his latest article he now appears to want to include "medically explained" conditions such as MS, HIV etc which have fatigue as a symptom, in the CFS definition.

    'Chronic fatigue syndrome: identifying zebras amongst the horses'
    Samuel B Harvey and Simon Wessely:


    http://ukpmc.ac.uk/articlerender.cgi?tool=pubmed&pubmedid=19818158

    ..."Thus, it may be that the divide between fatigue secondary to diagnosed medical problems and CFS may be need to be made more permeable, with some relaxing of the exclusion criteria in diagnostic guidelines for CFS. This may allow a greater use of evidence-based treatments developed for treating CFS amongst those with an apparent medical or psychiatric cause of their fatigue."

    ..."There are numerous examples of studies demonstrating that the fatigue associated with clear 'physical' illnesses is more closely associated with behavioural and psychological factors than with the severity of the underlying illness. . For example, fatigue in HIV-infected patients is more strongly associated with psychological factors than with measures of HIV disease progression or the use of highly active antiretroviral drugs [29]. There is also evidence that behaviourally focused interventions are some of the most effective ways of reducing fatigue, even when there is a clear underlying cause, such as rheumatoid arthritis, multiple sclerosis or cancer."

    ..."The UK-based National Institute of Health and Clinical Excellence guidelines on the diagnosis and management of CFS recommend a slightly more conservative approach, with a more extensive list of blood and urine investigations suggested . Such lists of physical investigations should not detract from the need to consider psychological causes of fatigue. Depression is very common amongst those with fatigue [4,15], with recent studies using the British birth cohorts showing over 70% of adults reporting CFS have evidence of psychiatric disorder prior to their fatigue symptoms beginning ."

    he and his colleagues really have muddied the waters by deliberately confusing depression and CFS.
  11. Mithriel

    Mithriel Senior Member

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    You have to remember that in the UK CFS doesn't mean what it does in the US, only with Reeves empiric definition is it coming close.

    While CFS US was meant to be a particular disease here it has always been used as a synonym for "tired all the time"

    What they want to study is fatigue and they want it to be a psychological symptom. In some ways we are just collateral damage to that idea. They talk about CFS in MS and Parkinson's disease for instance.

    They will never give this up. If we have XAND they will talk about CFS in XAND.

    The fact that ME was a physical illness (with proper physical signs) and came in epidemics was conveniently ignored.

    The King's College website, when I first looked at it, said that CFS was the same as neurasthenia (SWs breakthrough idea from the start) but that nothing much had been heard of it in the 20th century. No mention of any of the epidemics despite the constant claim that CFS was just the new name for ME.

    There has been enough evidence to prove that CFS US and ME were physical illnesses for years so more evidence will not convince them.

    They will never admit they were wrong they will just keep on as they are doing no matter how many illnesses are "peeled off" the CFS diagnosis.

    The general public has believed the lie that we just need to do a bit exercise, stop lazing about and feeling sorry for ourselves an dwe would be fine.

    Now they will find that the full force of the behemoth that has been built by the weasels will be aimed at them.

    People that I know with MS are already being advised to see psychologists for their physical complaints, much to their dismay.

    And if you go to see a doctor and you feel fatigue you will only get a standard set of tests. If you have an unusual disease or an unusual presentation or are borderline in you results you will be lost because they say that doing too many tests just makes the psychological problem worse.

    The psychiatric paradigm was never valid for ME or Incline Village CFS.

    Whether it is valid or not for others who are included under the loose term CFS, who knows?

    Mithriel

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