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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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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. EllenGB

    EllenGB

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    Just google my name and you can find the garbage. I can also send you by mail, a copy of the court decision. All that the hit campaign against SW did was to give him a gong. I'm all for focusing on the flaws in his and other people's arguments but not only were things ridiculously personal, some 'fact's were inaccurate and he was made out to be someone he is not.
     
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  2. peggy-sue

    peggy-sue

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    An interesting fact reported by the BBC news recently is that more soldiers who served in Afghanistan died from suicide after they got home than were killed in action.

    I'm sure these were the same soldiers Wessely said were just suffering from "a few drink problems - no PSTD at all".
    Still, good to hear he still got his award for the "help" he gave them. :devil:

    I'm afraid, Ellen GB, I don't know anything about where you have come from, or your hiatus, I do know your name, but not your context, so please forgive me if I've said anything out of turn.
    But I did find some of your statements (which I have already commented on here, ie emphasis on "fatigue" and your dislike of the concept of PEM) to be more than a little out of sync with what I percieve the definition of ME to be.
     
  3. Esther12

    Esther12 Senior Member

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    I think that the BBC piece reported that there were more suicides amongst all military personnel (ie not just those who had engaged in combat), than those who lost their lives as a direct result of conflict.

    re Wessely: I'm not too sure what a hate campaign is, but I think it's reasonable to hate Wessely.
     
    Min likes this.
  4. peggy-sue

    peggy-sue

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    It was a report specifically on those coming home from Afghanistan, just in the last week or so, I read.
    And no, you don't need to be in actual physical combat to be traumatised by the inhumanity and obscenity of war when involved with it.
     
  5. EllenGB

    EllenGB

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    Esther, Wessely does not deserve to be hated. His ideas on ME are appalling but to hate peopel on the basis of what you've read on the net? He's a nice guy. his patients like him. Never had a complaint to the GMC. It's just his revisionism that gets me. But if you write a lot, as he did, you get a lot published, youb eocme an expert in the eyes of colleagues. Lots of Gulf War vets I talked to didn't mind him at all. In his writing etc, he's been very critical of the lack of help for PTSD etc. He was also invovled wiht mass graves etc. He's done a lot which didn't make the net. If you only hear one side of the story, you can get a false picture. Which is not to say that I can think of a single thing on ME I agree with wessely about. I don't. He's entitled to his opinion. but the BMJ etc have ensured for years that those with a different views are not entitled to express theirs, except in letters. And that is unscientific. Why? No idea. Fiona Godlee clearly doesn't know what ME is.
     
  6. EllenGB

    EllenGB

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    Peggy-Sue, I have written soemthign about my background in the forum intridcing yourself. I was one of the specialists from the Ramsay time so know what ME is. not yet sure, like Prof. Jason, that it's the samke illness as CFS as CFs covers a multitude of ills. ME is one disease. Like MS. I am out of sync becasue I know the lit from 1930s and have seen how poor science crept in and the lack of diagnostic precision has almost turned CFS into a psychosomatic illness. PEM was nicely defined in a recent study using objective tests (Snell et al, just online). You can do a retest and the abnormalities become evident. One test doesn't. So my ideas are purely based on science. I don't like the Chalder Fatigue Scale because I see so many flaws. Nothing personal. Pure science. The issue has always been, do you consider all views or just those from a few individuals? I tend to read pretty much all. Then I make my mind up. that makes me an outsider but hey, that's science for you. Nitpicking. Like looking at definitions of recovery and realising it's only improvement.
     
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  7. Firestormm

    Firestormm Guest

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    Give me a shrink who can see outside of the box any day:
    :thumbsup:
     
  8. Esther12

    Esther12 Senior Member

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    He behaves in a way which seems likeable and charming to a certain sort. This is not the same as being a nice guy.

    My judgements of Wessely are founded on the papers of his I have read, the talks of his I have listened to, and the interviews he has given to the media. I've seen how much of the quackery that was inflicted upon me, and served to make my life so much more difficult, was a result of his work. I've seen the way that he has tried to portray himself as as an entirely innocent victim of unjustifiable persecution, without ever apologising for or even acknowledging the harm his work has done to patients.

    There are some people who make false accusations about him, or who get misled by some of the out of context quotes that can float around (I've held my nose to 'defend' him occasionally), but what I have seen from other patients is that, generally, the more of his work they read, and the better informed that they become, the more they dislike him.

    If he was wrong about CFS, then the way in which he leaped in and started making recommendations about how patients should be psychosocially managed without informed consent was repulsive, and set off much of the animosity which now surrounds CFS. The only way such an approach could have been morally acceptable was if he was certain he was right, based on overwhelming evidence which has certainly not yet been made public.

    He is entitled to his opinion on CFS patients. People are entitled to their opinions on all minority groups. But often when people hold appalling opinions, particularly if they promote them from a position of authority, then it is reasonable to hate them for it.
     
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  9. Esther12

    Esther12 Senior Member

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    There were a few pieces related to this story: http://www.bbc.co.uk/news/uk-23259865

    The suicide data was not just on those coming home from Afghanistan, but I think that there were concerns that this was not made clear.
     
  10. Kina

    Kina Moderation Team Lead

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    I think it would be true to say that each of us as individuals are entitled to like/dislike/adore/hate who we choose to based on our own observations, own experiences, own point of view etc. It's really not about what he deserves or doesn't deserve. He holds appalling ideas about ME and that's enough for most of us not to have a positive opinion of him.
     
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  11. EllenGB

    EllenGB

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    Hating is a strong word. Hating ideas is ok. People you haven't met? Not sure. I've met him. Whatever happened to freedom of expression? He's selective, sure, but some patients are also very selective. Don't hate them. Remember, SW does not decide if his papers are published and he does not invite himself to confererences to give a speech. Others are responsible for that. He just uses the opportunities he has been given. Like I did, e.g. when offered task of editign InterAction. Even if I think of the gang of four who ruined my reputation as a ME specialist, I can't really hate them. It's more that I pity them and feel sorry for everyone who no longer has the benefit of my knowledge. I don't think I hate any particular person. Maybe that's old age and the menopause for you. given I'm severely illl, I know the effects of the psychologisation well, yet still, I can't hate Wessely. Or White. Or Sharpe (who did some mean things). Or the doctors who in the old days used to diagnose us as hysterics. Hate is too strong a word. For people. Hate sausages though.
     
  12. alex3619

    alex3619 Senior Member

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    EllenGB , I largely agree with you about hate. For one thing it makes rational thinking hard. You could rewrite your last sentence to "Hate sausages thought" and it would still make sense: hate curtails rational thinking. Playing a hate game in this is playing to their strength, they can turn it against us.

    Intense emotion does however have one useful outcome: it fuels the motivation for advocacy.

    I also think those like SW and other extreme BPS proponents are embedded in a collection of cultural, economic and political systems that reward them, promote them, and protect them. That system may well be worthy of hate, but its not a person, nor even just a collection of people. That system needs to be overturned. The people within it are almost interchangeable parts: if SW retired then someone else would just fill that role in the system. The system goes on, and its what I oppose. We could succeed in advocating to end the involvement of everyone currently doing bad ME research (most of which is CFS research), and if we didn't touch the institutions and practices that promote it then nothing would have changed.

    I read a lot of what you write a long time ago, but I forget most of it now. I have been involved in ME advocacy since about 1993, though not seriously till about 1997, and not online till 2000. So I recall that I held you in high regard back then, but not why. I welcome your involvement here, though of course that does not mean I will always agree with what you say. Disagreement to me, though, is about learning. When ideas are in conflict, its important to find out why. So different viewpoints are usually good. If I disagree a lot I usually wind up learning a lot.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    He decides what to say to which audiences, and under which circumstances. The things he says which he expects patients to hear are the most moderate. But the things he has said privately to a committee, which were later revealed due to a FOI request, are quite a bit nastier, as are things said before we had access to everything on the internet:
    I don't care how pleasant he is in person - he advocates withholding biological investigation, treatment, and benefits for ME/CFS patients. Because of him and his ilk, many GPs, neurologists, CBT practitioners, governments, etc have read his opinions and a great deal of mistreatment of patients around the world has resulted.

    He is either deliberately badly over-stating his theories, as they are based on nothing at all, or he is a complete idiot being allowed to play "scientist" at our expense.

    I may not "hate" him, but that's only because he is not worth the emotional investment that would require. But I do despise him, and I think his impact upon ME patients has been vicious and shocking.
     
  14. Firestormm

    Firestormm Guest

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    Nice post Ellen :)

    With the proviso that I am unfamiliar with:

    Unless you are referring to what you wrote initially in this post i.e. him referring to neurologists etc? I haven't read anything relating to his 'current view on ME' but I'd be happy to of course.
     
  15. user9876

    user9876 Senior Member

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    He is still making vast over generalisations. I've noticed him tweeting saying a particular paper says something and I've read the paper and it doesn't make the point he is claiming or warns about the dangers of concluding that point.

    he seems to hedge his bets or imply rather than state things when he writes. Having read a few of his papers I've been quite shocked by the standard I find it useful when reading to try to write down the logical argument in a semiformal style but in his writing there are huge gaps, unspecified assumptions and ill defined terms.
     
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  16. EllenGB

    EllenGB

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    I do not agree with his views. Typo. Then reread post and thought it didn't contribute to the thread. Deleted it.
     
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  17. EllenGB

    EllenGB

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    A lot of people, not only psychs, agree with SW's views. It seems wrong to focus on him when so many share the same view and I've read a lot worse (they think of a symptom and then develop it....). The emphasis on one man does not get us anywhere. Problem in the UK is that doctors don't get to read different views, except in letters' section. That's the core issue. But it's not 'on trend' to analyze it and deal with it. (I tried, complained to COPE etc.). This will need all groups to complain. When the major journals also publicise the organic evidence, the debate will change. And that's where calm, factual letters re stats do so well. Cohen's d and all that. Groups have not gone that way for over a decade. I suspect that is one reason why it all went pear shaped. Personalization instead of pinting out the killer arguments. Our CBT protocol is based on operant conditioning and there's no evidence of that. No evidence of link to deconditioning (now accepted) so they've changed to cognitive factors. If the study group are dominated by those with CFS due to stress, cognitive factors might well play a role and three hours chat on the phone will improve fatigue. Powell et al and others. But how many studies measure perceived stress to see if it's a confounder? Virtually none.

    UK groups regard my analysis as wrong so don't consider it or the evidence. That is their choice but the current approach may not improve misunderstandings for a while as a result. The last ten years shows that what they are doing is not effective. So why not try something new? Dolphin has with success. If more used maths and killer arguments, we'd be better off, in my view. Finally, as we're being monitored, refs to hating people based on net gossip, essentially, will not look good. I now recall why I left fora. All that anger and hostility. I'm angry too so understand but anger does not have to lead to the personal 'attacks'. Despising goes too far in my view. Neil, please note.
     
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  18. user9876

    user9876 Senior Member

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    I think alot of the current emphasis has been around critisising the many faults of PACE. Too me this seems the right thing to attack since it is their big trial and so very flawed. I noticed that Psychological Medicine who published the recovery paper is not a member of COPE.

    Journals such as Psych Med still refuse to publish letters pointing out statistical errors.

    I'm still amazed that so many papers and trials can be based on asking a (random) set of questions (over several different dimensions) and then just adding up scores. Then quoting the mean and SD. There are so many assumptions such as an assumed utility function and assumptions of linear spacing between answers. Does no one think through the structure of the things they are performing stats on?

    I think this reflects something in modern life. I remember watching a debate on newsnight. I think it was about climet change. There was a scientist trying to argue through the details of the theory but all the journalist was interested in reporting was the politics around the story. The problem is personalisation is easy and it is hard to explain a scientific argument so I've often felt there is a general move towards the personality rather than the science.

    Its not clear to me who the groups being studied are; its easy to say they are looking at the wrong group but we don't really know. Looking at the PACE results though they have failed to make a case that they are seeing any real improvement. In their trial design they failed to control for different levels of expectation for different treatments and hence could simply be measuring a placebo effects as measured by self reported surveys. I think there was a study on placebo effects with Asthma where they found good self reported effects for placebo treatments but no physical effect.

    We should remember that it is up to them to demonstrate good methodology. And up to journal reviewers and editors to check and critisise. Its worth pointing out that Prof Robin Murray is clearly happy with a recovery definition that overlaps a trial entry criteria since he is the editor of Psych Med. that published such a paper. I know academic reviewing is weak but its not normally that bad.

    Neil?
     
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  19. EllenGB

    EllenGB

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    Our monitor.
     
  20. SilverbladeTE

    SilverbladeTE Senior Member

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    Problem with Wessely is not merely his M.E. "work", it's how he's also been involved in many other areas where his "Push" is always a blanket of soporific "mass hysteria" etc, and that over all shows what he really is: as Alex suggested, SW is a classic expression of economic/political claptrap that perverts our entire system and one of it's "button men".

    Psychiatry in effect is largely a tool of the state/corporate parasite and mentality since, unlike shall we say, the "engineering" areas of Science with hard practical catastrophic and obvious results for actions and mistakes, Psychiatry and Medicine as well, are ideal areas for those who wish to push a product or manipulate people, the new DSM V and USA arrests/convictions of senior psychiatrists and others for collusion with pharma corporations proves this.

    http://www.theguardian.com/business...thkline-fined-bribing-doctors-pharmaceuticals

    Both (product sales and manipulation) are highly desired by the unscrupulous which is why the Pharma corporations have routinely been exposed committing gross crimes that would get individuals jailed for life if not executed or classed as "terrorists"

    THAT is the reality of "Medicine", like food, water and power it is merely a means to an end for the most evil, destructive, dangerous and unscrupulous lunatics the world has ever seen.
    Wessely maybe completely sincere, but his beliefs and actions tie in exactly with what is wanted and so he is rewarded and has power.
     
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