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Continuing Correspondence, Countess of Mar and Prof White and Prof Sir S Wessely

Discussion in 'General ME/CFS News' started by Daisymay, Jan 26, 2013.

  1. Dolphin

    Dolphin Senior Member

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    Good points.

    The best analogy I can come up with regarding Peter White's views is that patients are like very obese patients. This occurred to me when reading all the various supports he/his clinic wanted to deny patients when they responded to the draft NICE guidelines: http://forums.phoenixrising.me/inde...ice-guidelines-insight-into-their-views.1239/ .
    One can find physical abnormalities in very obese people. But with enough dedication, many might be able to reverse these (through calorie control, exercise programs, etc.). And some might argue that giving very obese people disability payments, mobility aids, etc. might get in the way of them putting the full effort into losing weight.

    Like others, I haven't seen much sign of meaningful change in Peter White's views.
    (I tend to think less about what Simon Wessely says - he seems to say different things to different audiences and just because he says one thing one moment, doesn't mean he won't take a different approach another time. Also, I think these days Peter White is a more important player in the ME/CFS world).
  2. Dolphin

    Dolphin Senior Member

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    That reference, I'm pretty sure, is incorrect, as four people wrote the paper.

    I think they copied the quoted incorrectly from Magical Medicine (on PACE Trial):
    Peter White states about fibromyalgia (Psychol Med 2009:15 April: 1‐9:pMID: 19366500): “the increased incidence of the diagnosis may more reflect a change in the fashion for the diagnosis of fibromyalgia by GPs”, a common charge made by the Wessely School in relation to “CFS/ME”, for example, Wessely himself decreed: “It is regrettable that ME has become a disease of fashion, even a ‘fad’ ” (Recent Advances in Clinical Neurology, Churchill Livingstone 1990, pp 85‐131).

    White also asserts: “There is little doubt that patients with fibromyalgia have close comorbidities with several disorders that are regarded by many as functional disorders. These include: irritable bowel syndrome (and) CFS/ME. I have argued against this idea, suggesting that the commonality is abnormal illness behaviour, as seen in the process of somatisation” and he concludes: “The final area of commonality between fibromyalgia and CFS concerns the social risk markers for maintenance of both disorders”
    (http://www.entretiens‐du‐carla.com/publication.php?pub=fibro&pg=fatigue ).

    - the final link is actually on the next page of the pdf.
    I think I recall this conference in France. However, the link no longer works.
    ETA:
    I searched my computer for "entretiens" and found the following:

    so this might be the reference. Anyone able to confirm?

    ETA #2:
    The White paper can be found at:
    http://entretiens-du-carla.fr/publication.php?pub=fibro&pg=fatigue (if one removes the http://" bit)
    e.g. if one googles:
    the fifth link down has the link.
    .
    Valentijn likes this.
  3. Esther12

    Esther12 Senior Member

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    Searching for the paper's id 19366500 I got to this: http://www.ncbi.nlm.nih.gov/pubmed/19366500

    Psychol Med. 2009 Nov;39(11):1913-21. doi: 10.1017/S0033291709005601. Epub 2009 Apr 15.
    Risk markers for both chronic fatigue and irritable bowel syndromes: a prospective case-control study in primary care.

    Hamilton WT, Gallagher AM, Thomas JM, White PD.
    Source

    Academic Unit of Primary Health Care, University of Bristol, Bristol, UK.

    Full paper here:

    http://www.cfids-cab.org/rc/Hamilton-1.pdf

    I did a quick search for 'somatisation' and nothing came up.

    I was just searching Mar's letter for 'somatisation' to get context (I've still not read her letter properly), and noted the the use of the “somatisation par excellence” quote isn't really right. I've forgotten the exact context now, but I'm pretty sure he wasn't saying all CFS/ME was “somatisation par excellence”.

    I think that this is an important point from Mar:

    "Using terms that are deliberately ambiguous, sometimes with the intention of concealing the clinician’s belief that the patient has a mental illness, can only be damaging to the doctor-patient relationship."

    But it's really undermined by the use of ambiguous or misleading quotes. I think that the way in which Wessely et al manipulate language is a serious problem, but it's important to ensure that those criticising him make sure that criticism of him is very clear, precise and accurate.

    I've not read the paper this refers to, but I did read some of the discussion of it here, and this looks like a problematic representation of it:

    "In his 2012 JNNP paper (for which he designed the study and edited the manuscript -- The function of ‘functional’: a mixed methods investigation. JNNP: 16th January 2012) Sir Simon says that: “The term ‘functional’ …has increasingly come to mean ‘hysterical’…(and) its ambiguity was seen as useful when engaging with patients…. ‘Functional’ is a common term for medically unexplained symptoms…It has retained popularity among neurologists as a medical term for conversion disorder….It can, for example, be used to mean a disturbance of bodily function or it can be used to denote conversion disorder, and by telling a patient they have a ‘functional disorder’ they may encourage them to contemplate the former meaning without being aware of the latter…allowing neurologists to use the same term to mean one thing to colleagues and another to patients”."

    I don't really want to go through the rest of it. Looks like there are problems with it though. Even if it does still make some good points, the problems cannot help but undermine it.

    Mar needs to get Dolphin to double-check her stuff!
    Valentijn likes this.
  4. Dolphin

    Dolphin Senior Member

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    Thanks, but I have a lot of things to be doing.

    Ellen Goudsmit may be volunteering in a post on the ME Association Facebook page. She would have a better knowledge of the literature than me, particularly papers from before around 2003/4 (I recall her saying at one stage she has read 99% of the literature, although I think she hasn't been reading so many papers in the last couple of years or so).

    Also proof readers/fact checkers can come in various forms. For example, as I pointed out, that reference was a four-person paper, so it is not likely to contain quotes from Peter White saying, "I have argued against this idea, ...".
    barbc56 likes this.
  5. Desdinova

    Desdinova Senior Member

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    Hum did someone challenge the others to a battle of wits. Note to self 'self... Never Peeve off the Countess of Mar.'
  6. Esther12

    Esther12 Senior Member

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    I've just been looking in to this, and while the quotes are accurate, it's not a very good study. On my first read through, I thought that this was referring to some different (and more interesting) work.

    Here's a link to the paper Mar quoted from: http://translate.google.co.uk/trans...a=X&ei=hi8HUe-4Me7J0AX5woGQDw&ved=0CDYQ7gEwAA

    I've not read the whole paper, but once I realised it was only 100 people and retrospective I decided to stop reading it.
  7. Dolphin

    Dolphin Senior Member

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    For anyone interested, the original is here: http://www.medivera.nl/cgtbijmecvsvanuitperspectiefpatient2008.pdf
    (mostly in Dutch, but has an English abstract)

    Rough translation of the tables into English are here: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0803A&L=CO-CURE&P=R890&I=-3&d=No Match;Match;Matches
  8. user9876

    user9876 Senior Member

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    Looks like they have given up as they have difficult questions to answer
    http://www.meactionuk.org.uk/White-and-Wesselys-final-Response.html
    They are either confused about the meaning of causation as opposed to trigger or it is clear that their hypothesis for ME is that an initial illness is caused by a virus and then that illness continues to be maintained via psychological issues. They also claim that the PACE trial is effective. By shying away from a proper discussion on causation they are failing to advance science - within their description they leave no room for a hypothesis of immune system failures. If their simplistically defined disease lifecycle is adopted it reduced the space to look for causation.

    From reading this I think it is clear they have not changed their views one bit - but as usual do not want to be clear. I find it hard to understand how scientists who have written over 100 papers on a subject can have failed to define their hypothesis with clarity and unambigously. What is worse is they are professors celebrated by british science - it doesn't say much for the future of the country.
    WillowJ, taniaaust1, SOC and 5 others like this.
  9. Dolphin

    Dolphin Senior Member

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    One of the ways to test their hypothesis might be to see do the treatments they recommend lead to recovery.

    However, they have said in response to a FOI request http://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po they won't be releasing or publishing the data for the pre-defined outcome measure, "recovery". It looks like instead they will be releasing data on some watered down definition, which doesn't really test the hypothesis. (the original definition wasn't perfect either, but going for a looser definition certainly isn't the way to go).
    WillowJ, Desdinova and Min like this.
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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    Well, I think we all know the meaning of "weaseling out" of something.
  11. Koan

    Koan Be the change.

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    Damning with faint praise is an interesting technique but I can't, for the life of me, figure out why some of you went to such lengths to do it here - post after post of criticism and questions of accuracy by a couple of posters. Surely W&W are able to do this on their own. I don't think it did anything to change the outcome of this dialogue but it seems designed to raise questions re Lady Mar's excellent correspondence - which were correspondence, not scientific papers, after all - and meactionuk.

    No need to respond to this. Just an observation.
    meadowlark, maryb, peggy-sue and 3 others like this.
  12. Min

    Min Senior Member

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    Well said Koan.

    Lady Mar raised very valid points which they have simply refused to answer - because they cannot. It is our lives and those of our families that they have destroyed by misappropriating all research and treatment funding for our physical illness since the 1980s, and giving us only unscientific nonsense as treatment. Their 'graded exercise' treatment is so dangerous that many of the quarter of all UK sufferers who are severely affected report being made so by it.

    They say:

    when, at their insistence, we in the UK are never tested for the persistent infections implicated in M.E. In 27 years of severe M.E. I have not been tested for any.

    There is no proof that their treatments were
    for M.E. as people with M.E. were excluded from the trial.
    taniaaust1, Koan, Shell and 2 others like this.
  13. Stukindawski

    Stukindawski

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    That final response was a complete stonewall really wasn't it.

    Team BPS as ever, choosing the questions they answer and ignoring the rest.

    So there you have it, an obstinate commitment to non-engagement of inconvenient questions or suggestions. Clearly they're not going to expose themselves as charlatans.
    taniaaust1, SOC, Valentijn and 6 others like this.
  14. Shell

    Shell Senior Member

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    Same here. No tests for anything that might actually show something. I can't help thinking they have been well rewarded for their no tests- no treatment approach.
    Lady Mar (bless her cotton socks) smoked them.

    They may wish not to expose themselves as charlatans but this little correspondance shows them as little better than hedge witches and snake oil merchants.

    And all at our expense.
    ukxmrv, Valentijn, anniekim and 3 others like this.
  15. Koan

    Koan Be the change.

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    In the end... same old same old, of course. But, perhaps, just perhaps, said with a little less hubris than would have been evident in the past.
    anniekim and peggy-sue like this.
  16. anniekim

    anniekim Senior Member

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    Yep, their answer very clearly shows they still very firmly believe psycho and social factors maintain the illness, complete nonsense of course, but nonsense that has caused us huge damage.

    Digressing slightly, I know it is said that due to criteria used in the horrid pace trial many m.e patients were excluded, moderate and severe, what I don't understand is why the results, despite how they spin it, we're still woeful
    taniaaust1 and Min like this.
  17. anniekim

    anniekim Senior Member

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    yes, agree. I wonder why the British medical establishment give this view such support? I've seen it said that our medical journals like the Lancet etc happily publish these psychs flawed papers on M.e and yet refuse many bio medical papers. Why is this? Cronyism? just an inability to admit they have been wrong?
    Min likes this.
  18. Esther12

    Esther12 Senior Member

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    I wanted to see what was true.

    I've still not properly read Mar's letter, but there were a couple of parts that stood out to me as interesting, so I checked the sources. The first couple seemed accurate, but when there was a way of linking to the original source for others to judge for themselves, I still posted the link.

    Then Dolphin mentioned one thing which did not seem accurate (or seemed poorly cited, I'm not sure), I spotted another quote that was misleading out of context, and the use of a study which was not very good (although not any worse than some of the poor studies used to bolster psychosocial claims about CFS).

    How can we judge whether a letter is excellent or not without taking the time to check whether the claims made within it are accurate or not? I cannot make any judgement on it overall, as I've still not read it, and certainly haven't taken the time to check all of the claims made with it, but I do think that the problems that have been found with it are serious enough to seriously weaken the worthwhile points raised.
    barbc56 likes this.
  19. Min

    Min Senior Member

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    As they are refusing to answer it is hardly worth any more nitpicking Esther.

    They are unable to defend the indefensible - that their hijacking of all funding for a physical illness, plus their carefully orchestrated denigration of those suffering from it, has condemned huge numbers of people to decades of unnecessary suffering.
    Roy S, Shell, ukxmrv and 2 others like this.
  20. barbc56

    barbc56 Senior Member

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    I feel I need to respond. I can only speak for myself here, but I apply the same type of critical thinking to Wessely and company. When you see quote after quote that misrepresents him, it doesn't add any credibility for advocacy or quotes that may be accurate. It's gotten to the point that I try to check every quote but I just don't have the energy to do that. While I am also skeptical of Wessely it appears that the meme of poor us and it's all his fault is getting a bit tiresome. Because we perceive someone has treated us unfairly is no justification for using the same techniques against him.

    It's the same with the science. I don't go in with a perceived notion or at least as much as possible. It just so happens that my conclusions are a bit different than some here.

    We all need to raise questions. And yes, it's poor us. But continuing like this, picking everything apart that Wessely, White et. al. as well as ascribing motives which are nothing but speculation is not productive. If anything we need to focus on the fallacies of the PACE trial.

    We are all in this together. As a group we can do a lot. I would just like to see the direction of our energy change to something that will get us somewhere.

    Attacking an opponent is the least credible type of debate.

    Barb

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