Friday, 26 August 2011

Mind the Gap - Simon Wessely

Have just been perusing this article by Prof. Simon Wessely. It talks about the gap between psychiatry and neurology; insinuating that, more often than not, the two are inextricably linked. He uses the field of Chronic Fatigue Syndrome research for this - and I think he puts the metaphor to justice.

 The more controversial side of the article though, is that a minority of those with CFS have been hampering research, and even threatening the researchers themselves. Simon Wessely himself has been at the forefront of a heck of a lot of abuse and threats. He gives the anecdote: "somebody said that my wife is a ‘rat who should be thrown into a cage with infected mice'". Lovely. I also spent some time a while back trying to find the sources for the oft-used quotes by some CFS sites. It's a massive circular trail. Each quote links to another CFS site, which then links to another. These are the often used pieces of 'evidence' to exhibit how awful Wessely is.

 There does seem to be a lot of confusion and aggression to the term 'psychological'. Psychological does not equate to being 'made up' or 'malingering'. Would you be angry (besides the obvious reasons) for being classed as having a neurological disorder by a Doctor? If not, then why is having a psychological disorder - a manifestation of the brain - such a bad thing, precisely? [paraphrasing Wessely, here.]

 Even the above argument seems a little perplexing, regardless. I don't think anyone is insinuating that CFS is purely psychological. Wessely says in the article that "The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological."

 CFS and its research is very emotive. I know. People really want to get better. But spiting the people who are trying to find ways to help us seems incredibly short-sighted. Sure, you can disagree with Simon Wessely's arguments, but threats and attempts to silence researchers like him just seems ridiculous. Science works by tearing apart one another's hypotheses and backing up your arguments with evidence. Science does not work by clamorously screaming conjecture and attempting to silence anyone who doesn't agree with your world-view.


  1. Good blog and thanks for pointing out the Wessely article.

  2. "Science does not work by clamorously screaming conjecture and attempting to silence anyone who doesn't agree with your world-view."

    Will someone please tell Wessely that, it is exactly what he is doing.

    What sort of 'caring' doctor conducts a media smear campaign implying that a quarter of a million people with a neurological illness are violent, mad and bad, with no actual evidence that a single one of them has ever threatened or harassed him. Has anyone gone to court, has anone been convicted and have a single one of these been found to have M.E.?

    Disagreeing with you is not harassing or threatening you Prof Wessely!

    Te real victims here are the very patients he is ridiculing, denigrating and demonising.

  3. Second Anonymous said...

    "What sort of 'caring' doctor conducts a media smear campaign implying that a quarter of a million people with a neurological illness are violent, mad and bad, with no actual evidence that a single one of them has ever threatened or harassed him."

    If you are accusing Prof Wessely of that then you are libelling him too. If you are so sure of your self how about quoting Prof Wessely directly? Of course you can't do that because he has neither said nor implied anything of the sort. But why let the facts spoil your fantasy?

  4. Simon has been saying the same thing for 20 years, yet we still don't have objective evidence that CBT or GET reduces disability. All we have are minor improvements on self report questionnaires. When they actually measure the activity levels of patients with actometers, they find that activity levels do not increase.

    Likewise, the publication of the results of the PACE trial did not bother to report recovery rates at all.

    The reason why patients wish to resist being classified as suffering from a psychological disorder is that psychological treatments don't lead to recovery and the psychiatric association discourages researchers from other fields from investigating the disease.

    Now I don't think anyone deserves hate mail or anything like that, but you need to realise that the reason why Simon is maligned by patients is not merely because of the research he pursues.
    There are other researchers in the USA for example, who have published papers on CBT/GET, but they still advocate for increase biomedical research funding, unlike Simon who has done little to encourage other researchers over the last 20 years.

    If he really cared about patients, surely he would take a better tact?

  5. “The treatment of today’s ME/CFS-patients is comparable to that of lobotomy patients decades ago” “When the full history of ME/CFS is written one day, we will all be ashamed of ourselves”

    Prof. Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway

  6. You mean the Ola Didrik Saugstad who is a father of an ME/CFS patient, who is an ME/CFS lobbyist, and who is currently collaborating with WPI on a XMRV confirmation study (that is taking way too long to publish)?

  7. @anonymous2

    You clearly have not read wessely's article thoroughly as he clearly states that the actions harrassing him and others are the responsiblity of a few CFS/ME sufferers not the majority as you say- I suggested you read it again carefully this time.

  8. Elliot,

    There is no such thing as a disease named CFS.

    What I, and others, have, is myalgic encephalomyelitis, a postviral neuro-endocrino-immune disease, known since 1934 and classified by the WHO in the 1960s. Treatment includes antivirals and immunomodulators.

    CFS is not in the WHO tables. It is an artefact from the late 1980s to select trial participants, for research into what was once thought to be a type of chronic mononucleosis. Everyone can pretty much make up their own definition, albeit that they are supposed to target ME.

    What Wessely did was to take his definition way out the intended area to include mainly psychiatric cases instead. It's a much larger group, and they are very different from us.

    This was, by the way, not his own original idea, but it came from UNUM, where he was on the payroll.

    The reason that we are angry with Wessely and others is that he claims we, too, have his type of CFS, instead of ME, and that he has been granted such power that we cannot get the proper treatment anymore for our disease. Not that his own treatment of preference (CBT/GET) is really helping many people - but it makes us worse. A lot worse, sometimes life-threatening.

    We don't care whether we have a physical or mental illness. We just want to get better. And because of Wessely and the people that play him, we can't. It's not that we don't want him to do research, it's that we want research into ME, too.

    This is the general situation in England, Wales, the Netherlands and Belgium. What these countries have in common is how health insurance and social benefits work. By denying us the correct diagnosis, they are denying us most of our social and medical rights.

  9. Nice blog Elliot, but, oh dear, the same commentariat slither out of the woodwork chanting the same echo chamber raving that accompanies all sensible writing about CFS.

    I'm mighty glad that I only have CFS and not that dreadful ME that appears to rob people of their critical thinking skills ;((

    Sorry, I've probably only made things worse for you now, no doubt this comment will attract even more swivel-eyed responses to your blog.

    Never mind, I've read your story over at BS ... somehow I think you're able to take it ... you might even be able to raise a smile.

    All that's missing is the story that Simon Wessely tries to drown young ME patients and we're playing Wessely bingo ;)

    Cheers - and best wishes.


  10. Hollings

    One day, when you are capable of growing a beard, you might just gain a little 'insight'.

  11. An ad-hominem, from 'Anonymous'! How wonderful.

    Guido, are you saying that UNUM paid Wessely to 'create' CFS (or, the terminology of it). To what ends precisely? Do you have any evidence to back up that he was following orders from UNUM to include more people in the CFS diagnosis?

  12. "If not, then why is having a psychological disorder - a manifestation of the brain - such a bad thing, precisely?"

    Leaving this illness in the hands of psychiatists has not decreased the amount of sufferers in the last few decades. People with this illness are frustrated that money has not gone into biomedical research that might be more fruitful.

    As more illness that were thought to be psychological are found to have biomedical causes, the psychiatists have to fight to hold on to the remaining conditions. This recent articles and attacks on M.E. are an example of this boundary maintainance.

    M.E. often strikes without warning and the impact it has on a persons life is impossible to imagine if you haven't experienced it. You may think you can. Multiply what you imagine by 100 and you might be getting close. It's hellish.

    Then you turn to your doctor for help and realise that there is none.

    It sucks to have M.E. and hopefully one day soon, a breakthrough in understanding will occur. I am pretty confident it won't happen in the U.K. though. Too much B$, ego and professional ignorance...

  13. I'm not sure if you're speaking directly to me, Anonymous, but you quoted me, so I'm assuming you are. I have CFS/ME. I agree that it is absolutely awful, but I have to disagree with how you view the current situation. (Though I, too, wish for a golden bullet cure, but I'm investing in CBT/GET until then, as I find it modestly useful.)

    The problem with the biomedical argument is that, to gain money for biomedical research, you need to have a premise for why you're researching. So, you have to put up your hypothesis. Blindly looking about won't usually reveal anything useful - especially with the human body; with all of its complexity.

    Biomedically speaking, recently we've had XMRV - which hasn't turned out well. There have been lots of studies relating to that. Granted, the majority were negative, but money is going in to biomedical research where the opportunity is available.

  14. Elliot, read, for instance, Jonathan Rutherford's article "New Labour, the market state, and the end of welfare", in 'Soundings', 2007.

  15. Great blog, Elliot.

    I don't know much about M.E. (does anyone?), but nothing is achieved by vicious ad hominem attacks.

  16. "Evidence or shut the f*ck up", is the eloquent motto of modern skeptics, I believe?

    If ME patients claimed to be receiving harassment from doctors, that would be the predictably glib and superficial response of many Bad Science posters.

    But I would like to see some hard, documentary evidence from Prof. Wessely supporting his passive-aggressive cries of distress.

    Let's have the police records, the notes, the screen shots, the statements and the crime numbers, please.

    Because I am a true skeptic, meaning that I am not going to suspend my critical thinking just because the person making the unsubstantiated, anecdotal claims is a big noise psychiatrist with letters after his name.

  17. Yes. You're very skeptical..

    By the way, have you perhaps thought of contacting Simon Wessely []? I'm sure asking him what his evidence is, is far more pragmatic than ranting on a blog post?

  18. Also, when looking at the personal statement of Dr Charles Shephard, you see a..trend.

    Funny, that.

    Though, I suppose he's lying, too.

  19. Dear Mr. Hollings,

    If the allegations Shepherd - and Wessely, for that matter - make are true, then they should have been referred to the police, not to the Today Programme or the Guardian.

    The police require evidence, you see - the BBC sometimes do not.

    I assume that, by supporting evidenced-based medicine you also support evidence-based journalism. Your blog posting, and the press articles spawned by Wessely's allegations that inspired it, contain not one jot of hard evidence besides hearsay.

    When a person makes a claim, the burden of proof is on them to prove that claim to the skeptic - in that case, me. As someone once said, extraordinary claims require extraordinary evidence.

    I regard the claim of murderous, unhinged bedbound people who can hardly lift a glass as pretty damned extraordinary.

    Before you chose to rant on your blog post, perhaps you should have written to Wessely yourself?

    If you had received a reply, not only would you have gained more readers from an exclusive, you would also have been able to stick it to the fabled 'ME Mafia' we are told stalk Britain.

    Unfortunately, any polite request to Professor W for evidence will probably worsen his existing paranoia.

    By the way, I am sorry I incorrectly referred to you a 'skeptic'. I will now instead refer to you as 'a bloke'. I trust that rectifies matters.

  20. Shepherd stated *within the link I sent you* that he referred matters to the Police.

    I agree, that the first-hand evidence is not there. In place of that, we have anecdotes. Multiple anecdotes, in fact, from different people, all saying a similar thing. Whilst the multiple of anecdote doesn't equal evidence, it can inform us of possible trends occurring.

    Let's take a look at the anecdotes, then. We have numerous scientists- some named, some anonymous, who have claimed to be receiving hate mail/some form of negative feedback. Some have been sent threats. []

    Now, we can reason that either all of these individual people are lying, and are part of an elaborate conspiracy to suppress those with CFS, or that they genuinely are receiving these messages. Which one seems the simplest explanation of the two; and the one that makes the least assumptions? Occam's Razor.

    If you disagree with that, well there's nothing more I can say.

  21. Also, first paragraph of that Guardian link:

    "The full extent of the campaign of intimidation, attacks and death threats made against scientists by activists who claim researchers are suppressing the real cause of chronic fatigue syndrome is revealed today by the Observer. *****According to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.*****"

    So, now either the Guardian are making up statements by the Police (that's illegal, right?) or they're in the big conspiracy, too.

  22. Nice one, I wondered when the 'conspiracy theorist' strawman would crop up. Predictable.

    It is not unheard of for journalists to mistakenly attribute quotes or to embellish them for effect - I am sure you would not argue that the evil Daily Mail would do this, and the same applies to your beloved Guardian I'm afraid. But that article doesn't even include a quote from the police - but more hearsay.

    There is certainly a handful of ill people who have been made very angry by years of maltreatment and misdiagnosis from certain medics obsessed with somatoform disorders. That anger has, in some cases, boiled over and regrettably some ill-advised comments have been made.

    But the media hysteria from Wessely, et al is in no way justified.

    There are two opposing camps here: wealthy, powerful professionals with years of experience and a high salary, with many media contacts who can summon police presence at the press of a button.

    And a few extremely fatigued, severely ill, possibly bedbound people living on benefits who may not be able to even leave their homes.

    You, and fellow Bad Science posters, take these two camps and conclude that the *professionals* represent the repressed underdog.

    I fail to see the logic - or morality - in that.

  23. One final question, Mr. Hollings:

    In the event that an ME sufferer gets bullied or harassed by a doctor who fails to believe in their condition - where do you think they should go for redress, assuming they are on a low income and don't have contacts at the Guardian or BBC?

    You clearly write well and have sufficient health to publish your material online. Perhaps you could use your skills to stick up for the disabled, sick and needy in society, instead of promoting the views who have contributed to their plight?

  24. One final question, Mr. Hollings:

    In the event that an ME sufferer gets bullied or harassed by a doctor who fails to believe in their condition - where do you think they should go for redress, assuming they are on a low income and don't have contacts at the Guardian or BBC?

    You clearly write well and have sufficient health to publish your material online. Perhaps you could use your skills to stick up for the disabled, sick and needy in society, instead of promoting the views of those who have contributed to their plight?

  25. Many of the 'minority' group insinuate/outright state that there is a suppression of themselves, and others with CFS. To benefit the insurance companies (some state); the psychiatry field (some state).

    Conspiracy: A secret plan by a group to do something unlawful or harmful.

    I'm failing to see the strawman. If you wish for clarity, I am not stating that all those with CFS believe in this conspiracy. I have CFS and don't, for example.

    If you believe that the journalist embellished, or perhaps, fabricated quotes then you may want to send a complaint the PCC, or another body. Whilst I'm sure the Guardian get things wrong, I wouldn't put them in Daily Mail territory. That's a bit harsh.

    If you read Bad Science (and forums), you'll see that there is no respect for authority or 'professionals'. Look at Andrew Wakefield. He was ripped apart (intellectually) for his false claims, yet he was a certified Doctor. Ben Goldacre criticises his government and the newspaper that he writes for.

    I think it's more of a case of people looking at the situation objectively, understanding that people are very desperate and very ill, but also realising that death threats and attempts to silence researchers is very wrong. Also the misquoting of researchers on CFS sites (and then using that as 'evidence) and sheer vitriol makes people take a step back, too.

    Anyhow, I'd recommend reading the Bad Science forum thread and reading through the arguments that some fellow posters have been making. I believe there was a thread made about Simon Wessely himself, where quotes by him (on CFS sites) were sourced and found to have words missing. (Or that may be the CFS thread, where quotes used by Malcolm Hooper were took apart- I forget, the threads are ridiculously long).


    Also, not believing in their condition is contextual. If the doctor thinks the patient could be helped with psychiatric based treatment, is that classed as the Doctor not 'believing in them'? To some, it would.

    I did volunteer for a young persons CFS charity, but have had to leave due to time constraints (Re-starting my education). Thus, I have worked to help people who are ill themselves. However, I cannot agree with what a lot of the more fringe groups of CFSers say.