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Simon Wessely wins prize for "Standing Up For Science."

Discussion in 'General ME/CFS News' started by urbantravels, Nov 6, 2012.

  1. Esther12

    Esther12 Senior Member

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    This thread has moved on too rapidly for me to respond to all that has been said, but do want to disagree with the suggestion that, as Wessely has been operating within a system in which others also have power and influence, this lessens the extent to which we can hold him morally responsible for his work, or the harm he has done. I think that almost all of the most loathsome people are operating within systems that allow them to abuse their power over others: it is difficult to do real and lasting harm without this - that doesn't mean that they are any better than a random thug working on their own.

    Wessely's work played to the biases and interests of those with power - while it is right to blame them too, this does nothing to absolve him of responsibility. Indeed, he has done rather well from building his career in this way.

    Also, as others have pointed out, I don't think that Wessely does get focussed on unduly. While he was a key figure in promoting the routine medicalisation of the cognitions and behaviours of patients, simply because they have been given a CFS diagnosis, most complaints about CFS quackery are now focussed on the way in which biopsychosocial work not involving Wessely is being spun and manipulated. I do think that Wessely helped lay the foundations for this disturbing approach to CFS patients, and the belief that they do not deserve to be spoken to honestly and as equals, and I am not going to pretend that this is anything but repulsive - even if this does lead to some in the media as trying to pretend angry CFS patients must be basing their views on out of context quotes, or a failure to understand how mind and body can interact.
     
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  2. peggy-sue

    peggy-sue

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    He has the power to change the situation for all of us - and all he needs to do is read the science about the disease, and take the information on board, with a properly open, scientific "mind", something he clearly lacks.
     
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  3. Esther12

    Esther12 Senior Member

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    PS: Also, there were things Ellen posted that I agreed with, and things that I did not. Too many words for me to go through it all in detail!
     
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  4. Kina

    Kina Moderation Team Lead

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    Please note the discussion related to CFS overlapping with depression can be found here.

    Please limit discussion on this thread to what it was originally meant to be about.

    Thank you.

     
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  5. biophile

    biophile Places I'd rather be.

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    In response to this thread being slagged off for supposedly saying untrue things about what Wessely said:

    In additional to the Science Media Centre's orchestrated media campaign against the (alleged) abuse, intimidation, harassment, violence (i.e. one researcher punched in the street), and armed militancy (i.e. someone caught carrying a knife) against CFS researchers, Wessely also made the following statements:

    [As for Professor Wessely, he gave up active research on CFS/ME 10 years ago. He now specialises in the problems of war veterans. “I now go to Iraq and Afghanistan, where I feel a lot safer,” he says.]

    Dangers of research into chronic fatigue syndrome. Nigel Hawkes. BMJ 2011; 342:d3780.
    https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106D&L=CO-CURE&P=R873&I=-3

    [“People will rather go over Niagara in a barrel than ever getting involved in CFS again”.]

    False Positive | Science Magazine (New Focus) | 23rd Septemeber 2011
    http://sciencemag.whereloan.com/content/333/6050/1694.full.pdf

    In a telegraph.co.uk blog, Damian Thompson claims to be quoting an example of an explanation for why doctors who used to regard chronic fatigue as an exciting field of research no longer do:

    [Because, to quote one of them, “it’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade”.]

    'It's safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade'
    By Damian Thompson Health and lifestyle Last updated: September 28th, 2012
    http://blogs.telegraph.co.uk/news/d...-contradict-the-armed-wing-of-the-me-brigade/

    Armed wing of the ME brigade? People have died gruesomely for insulting the Prophet Mohammed. No doubt such a comparison also conjures up the related activities of some Islamic extremists, including terrorist bombings and posting graphic videos on the internet of the heads of infidels being slowly cleaved off.

    This is what Wessely actually said:

    [Wessely says although he is used to being subject to abuse, other researchers were "absolutely appalled" by their treatment. "This will convince another large group of decent scientists to say: oh no, I would rather go find the gene for homosexuality or do work on images of the prophet Mohammed than do this."]

    Chronic fatigue syndrome: life after XMRV
    Ewen Callaway 3 June 2011 | Nature | doi:10.1038/news.2011.347
    http://www.nature.com/news/2011/110603/full/news.2011.347.html

    Dozens of people were killed and more were wounded in protests over religious related cartoons:

    http://en.wikipedia.org/wiki/Jyllands-Posten_Muhammad_cartoons_controversy
    http://www.theguardian.com/world/mi.../21/tension-anti-islam-film-muhammad-cartoons
    http://www.news.com.au/world-news/m...mohammad-drawing/story-fndir2ev-1226694607238

    Someone also had a $100,000 bounty placed on his head (raised to $150,000 "if he is slaughtered like a lamb"), and a series of arrests have followed over plans of assassination or terrorism:
    http://en.wikipedia.org/wiki/Lars_Vilks_Muhammad_drawings_controversy#Threats_and_attacks

    This is how Oxford Dictionaries defines terrorist and terrorism:

    http://oxforddictionaries.com/definition/english/terrorist
    "a person who uses terrorism in the pursuit of political aims"

    http://oxforddictionaries.com/definition/english/terrorism
    "the unofficial or unauthorized use of violence and intimidation in the pursuit of political aims"

    Wessely did not use the word "terrorist" as far as I know, but it is hardly surprising that people think he effectively did give that impression, given the context of the coverage and the hyperbolic comparisons, and the interchangeability between "terrorist" and similar words such as "militant" and "extremist", etc, all used by others in the past to describe a small group of unknown ME/CFS patients/advocates who as far as we know have somehow evaded criminal convictions, despite their alleged ongoing crimes, and having "a specialised unit at the Metropolitan Police dedicated to monitoring the threat" (according to Michael Hanlon, who wrote an article interviewing and claiming that Wessely was "facing a sustained terror campaign", wording which Wessely has not apparently protested over if he is aware of it).

    http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece
     
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  6. peggy-sue

    peggy-sue

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    I'm getting very confused as to where EllenGB is coming from at all.

    Fully in support of "sir" simon, does not consider PEM to be a "useful concept", (despite there being scientific evidence for it, but has no objections to psychological concepts, plucked out ot thin air) and is saying she needs "to pace".
    I'm confused as to why she is not doing CBT and GET, and getting better, given pacing would not appear to be recommended by the BPS school of thought and with no PEM, ME can be ruled out.
     
  7. user9876

    user9876 Senior Member

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    When she said she agreed with "sir" Simon that was a typo that she corrected to disagreed with.
     
  8. peggy-sue

    peggy-sue

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    So, it's just that she thinks him to be misguided academically, but that he's still a lovely cuddly human being who only wants to do his best for sufferers, and it's the big bad editors of the Lancet who insist on only publishing BPS based studies. ??
    (although he is responsible for producing BPS studies only)
     
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  9. alex3619

    alex3619 Senior Member

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    One of the things we have to do for progress is put all of it under question: psych, nonpsych, biomedical, nonbiomedical, BPS, etc. One thing that has become clear is that reliance on experts is usually reliance on dogma, old ways of doing things, and old opinions. Often an expert is right, but often they are wrong too.

    Jonathon Edwards gives us a good example of an expert who is open and willing to discuss possibilities on this forum. I do understand why most docs/researchers don't, they don't have the time and are busy working on things - whether treating patients or researching our issues. However given the history of ME and CFS it is irrational to expect we will all just accept an authoritative claim without substantiation.

    In any case I view authoritative claims, like most scientific claims, as hypotheses ... some strong, some weak, some probable, some improbable. Sometimes they are right, sometimes kind of right, and sometimes they are wrong.That is the point of science, to weed out those claims that are wrong, to test claims that look right, and to investigate new hypotheses.
     
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  10. peggy-sue

    peggy-sue

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    I'm getting very concerned that somebody who considers "PEM not to be a useful concept" has a position of authority or trust in any patient advocacy. :(
     
  11. Valentijn

    Valentijn Activity Level: 3

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    I think a lot of these types of issues is due to too much being made of semantics. Yes, the name and criteria and psychological involvement is relevant, but FFS, why can't some of these people have civil discussions about these things?

    We're all in this together, yet a few people seemed determined to burn everything to the ground if anyone disagrees with them. With our neurological issues I know damned well how defensive and over-sensitive we can feel at times, but we're all grown-ups and we need to be able to learn how to put on the breaks when we're getting too upset about things to interact rationally and reasonably..
     
  12. peggy-sue

    peggy-sue

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    PEM IS a core issue, and it's nothing to do with semantics.
    I often do use common short-cuts to making decisions, I have to because of lack of working memory and lack of the energy to go into every tiny detail.
    My short sojourn to threads with EllenGB in them were prompted by the fact that I did recognise the name, but didn't know what she does, and by the insinuations that she had been specifically invited "back" after some fuss I know nothing about because I wasn't here at the time it was going on.
    I was curious. I now still do not know all the details, but I have gleaned "enough" information to have decided to be mistrustful.
     
    Valentijn likes this.
  13. Bob

    Bob

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    I'm not certain about this, without looking back through the discussions, but I think that the wording you have quoted might mean something very specific, and might not be an overall judgement of the validity of PEM.
    It might be related to an opinion that PEM is a difficult concept to define and measure scientifically.
    Post exertional fatigue might be fairly straightforward to measure scientifically, but how do you measure malaise?
    If something can't be measured scientifically, then perhaps some people might consider it not to be a useful concept in terms of defining and measuring either the illness or any potential treatments.
    I agree that PEM is essential for defining ME, but it has quite a subjective quality to it.
    If it is to be measured objectively in research, then it has to be defined objectively.
    Dr Snell actually measures post-exertional fatigue in his exercise test, I think.
    I suppose that you could combine physical capacity tests, along with subjective questionnaires, and also cognitive tests, for a working definition of malaise.
    But then we all seem to have slightly different symptoms, and different symptoms at different stages of the illness, and some people complain more of cognitive issues than others. So perhaps it's difficult to define 'malaise' exactly in terms of measurable outcomes.

    Edit: Thinking about it further, I think that post-exertional symptomatic flare-up, could be a workable definition of PEM for research. That doesn't seem too difficult a concept!
     
  14. peggy-sue

    peggy-sue

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    :p
    At the moment, it is operating at 4 times normal gravity (as far as I'm concerned.)
    There, I've stuck some numbers on it. That should pass any psychiatrist's peer reviewing process! :D
     
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  15. Nielk

    Nielk

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    Exactly!
     
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  16. Bob

    Bob

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    This issue came up at the last CFSAC meeting, during a short discussion of PEM with Beth Unger, where one or more of the committee members were emphasising the importance of recognising the importance of PEM in the CDD's ongoing diagnostic criteria study. Unless my memory is playing tricks with me (it happens a lot), I remember Beth Unger saying something along the lines of not knowing how to create a workable definition of PEM, in terms of measuring it.
    There have been some research papers published on the subject of PEM (in terms of measuring post exertional symptomatic flare-ups), so I'm not sure why it should be quite such an unknown quality/quantity to the CDC.
    I hope that Beth Unger is working hard to make a workable definition of PEM, and working towards incorporating subjective and objective measures of it in the CDC's study.
     
  17. Nielk

    Nielk

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    It does t seem to me that she is con not concentrating on the PEM issue too much. She was pretty dismissive about it at the CFSAC meeting.
     
  18. Kina

    Kina Moderation Team Lead

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    Please note, quite a few posts have been removed from this thread as they were off-topic. If you see that one of your posts has been deleted and you want to know why, please contact me via Conversation

    Please limit discussion on this thread to what it was originally meant to be about -- Simon Wessely wins prize for "Standing Up For Science".

    Thank you.
     
  19. simlaw2

    simlaw2

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    António Caetano de Abreu Freire Egas Moniz, appart from having a stupid name, he also recieved the Nobel prize for inventing the hidious practice of prefrontal lobotomy by sticking a sharp instrument though the eye socket.
    I think that in time Sir Simon will be viewed in the same light as the above.

    I notice that he has turned to tormenting our returning troops at present, no doubt he thinks their experiences have driven them nuts and I expect he will ignore the recent research that shows brain abnormalities in a lot of veterans who saw combat.
     
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  20. aimossy

    aimossy Senior Member

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    pavlov........... this guy is getting negative reinforcement...I think that's what its called I could be wrong. personally I am only interested in seeing all the proved scientific physical stuff that is so compelling and has seemed to sparked a lot of positive research over the last couple of years and there is more coming.cbt can be a helpful tool in life. but I have never heard of it successfully as a cure for cfs or me. if it did my belief is they do not have cfs or me.
     
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