1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

CFS etc over on Bad Science

Discussion in 'Action Alerts and Advocacy' started by Angela Kennedy, Apr 23, 2010.

Thread Status:
Not open for further replies.
  1. flex

    flex *****

    Messages:
    304
    Likes:
    0
    London area
    As far as I am concerned this is Goldacre on a further aself destruction course. He is providing amo for the proposal I have made to report him and his website to the GMC. They have already set a precedent by taking a case against Dr Myhill. So let the junk and attacks continue on his site, save them, don't reply and let them build their own case against themselves. We will just have to forward to the GMC. If this is not putting patients at risk as Dr Myhill was so pathetically accused I don't know what is.

    Thankyou Ben Goldacre for being the author of your own misfortune, yet again!!!
  2. Stuart

    Stuart Senior Member

    Messages:
    136
    Likes:
    6
    Industry shills are PAID to make such posts. You too can make money blogging disinformation!! This happens in the political blogosphere as well as industry versus any critic or activism.

    Don't engage, don't go on the sites where such links are established, it only serves to promote their disinformation campaign.
  3. lotusflower

    lotusflower

    Messages:
    35
    Likes:
    0
    Wrell done flex
  4. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    Give them enough rope and they will hang themselves. Leave them alone and they will go home.

    I don't understand why this thread was started. It purports to advise against engaging with a bunch of (at best) sad fools, yet the effect of the thread is exactly the opposite. If I had the choice, I would pull this thread. Don't give power to such negative energy.
  5. Min

    Min Senior Member

    Messages:
    1,190
    Likes:
    1,202
    UK
    My point is that the Myhill supporters there appear to have been deliberately manipulated by the jeering attitude there in order that that 'jonas 'could inform the GMC that Dr Myhill’s campaign is now attempting to directly intimidate complainants.
  6. lotusflower

    lotusflower

    Messages:
    35
    Likes:
    0
    I hope someone has kept the thread or can keep it because some of the abuse has already been deleted.

    As far as I'm concerned, it is a public assault, I think that is illegal
  7. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    Jace, that IS why I started the thread - to advise against engaging. But it was NOT to just 'ignore'. This situation is potentially very problematic, and those of us that can stomach it are observing - a sort of reconnaissance, if you like.

    I think perhaps you and I have different views of ideas like 'negative energy'. I believe that's an ideological committment to 'positive thinking' - which I don't share- because I am a rationalist. I'm not trying to put down your views, but I really do not share them. I believe sometimes you have to confront negative issues in order to deal with them. You may differ in your views, but this is not a good enough reason to want to 'pull the thread'.
  8. mjrobbins

    mjrobbins Guest

    Hello!

    I'm Martin, I'm a blogger and a journalist at The Guardian, and at the Bad Science forums I'm 'mjrobbins'. I just came over as I'm curious to know more about what you guys are about, why you support Myhill, what the deal is with Professor Wessely, et al. Bits of this I get, I had a girlfriend with CFS and I certainly understand the frustration, etc, and I think I understand why Wessely is a particularly controversial figure. Bits of it I don't get - for example I can see why Myhill was reported (the stuff on vaccines is a bit whacky), and while I agree that Wessely has some controversial ideas, he seems very genuinely concerned about CFS, and I'm not sure I understand how he was responsible for the Ean Proctor stuff, and also the stuff about my fellow Guardian columnist Ben Goldacre seems odd - I doubt he's even aware that the forum threads or complaint exist since he very rarely ventures there.

    I'm fairly open minded and an equal opportunity sceptic - as well as tackling alt-med I've also gone up against people like the British Psychological Society in my time at The Guardian, and tackled the GMC over homeopathy - so I guess I'm just here to engage in a hopefully cooperative way, and learn what you guys are all about.

    Over to you guys!
  9. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Hi Mjrobbins,

    Just want to let you know that there is no "you guys". This forum is peopled by ME/CFS patients from all over the world with diverse opinions and alliances. There is no identifiable "you guys" to find out about. There are hundreds of individuals.

    Sorry ME/CFS has touched your life.

    Peace out,
    Koan
  10. Gerwyn

    Gerwyn Guest

    Wesselly has prejudices not ideas. he does not appear to be able to tell an idea from a hypothesis.He does not attempt to construct a scientific hypotheses let alone test them.perhaps he is not at all sure what a hypothesis is in scientific terms.He does not appear to even have a rudimentary understanding of statistics .HE uses selection critrea that merely diagnose people with depression and then calls them CFS. This is the complete antithesis of the scientific method

    The Oxford criterea have never been published and are not internationally recognised yet he insists on using them once again in breach of Scientific protocols.Dr Wesselly advocates the use of CBT and GET which have no scientific evidence to support them whatsoever.Of course not being a scientist himself he may not be aware of this.

    If the evidence in favour of GET and CBT were presented as evidence of safety and efficacy for a drug then that preparation would not get a licence.

    Psychiatry lies at the very fringes of medicine and its members seem to cling to Freudian concepts(which are totally unscientific) like children to a security blanket.

    Modern science seems to have passed psychiatrists by and they produce no explanatory models regarding mental illness(if indeed there is such a thing) and hence can offer no hope of a cure.

    They appear to spend a great deal of their time in clandestine meetings drawing more imaginary labels to categorise people so that they can treat them with off label drugs.

    Somatoform disorder for example is completely unscientific because its mind independent existence is unfalsifyable.

    It exists only in the minds of psychiatrists and is nothing but a socially constructed label. Yet psychiatrists treat it as an objective disorder

    I,m sure that they should be able conjure a psychiatric label to cover that bizarre aspect of their behaviour but probably would not have the reflexivity to see the absurdity in their own behaviour.

    Wesselly appears to be generalising his anger towards a particular person and transferring it onto helpless victims the majority of which are women.

    Perhaps that is why he values Freudian terminology so much. The oedipus comples springs readily to mind!

    The fact that he appears to have serious attachment issues is a more scientific explanation consistent with modern neuroscience.

    Psychiatrists in Britain probably would not recognise that term because ,astonishingly, they are not trained in neurscience.

    Yet they have the gall to set themselves as experts in disorders of the mind.

    This is probably why DR wesselly is reduced to using the terminology of postmodernism such as mind body duality and other Descartian concepts.

    A scientist would not need to use ill defined terminology in support of his arguments and indeed would not do so!

    As to why we support dr Myhill.The answer is simple she uses science
  11. Robin

    Robin Guest

    HI Martin,

    I'm not a Myhill advocate so I can't answer about Sarah Myhill specifically, nor am I from the UK but I think I can answer a little bit about the Wessely hatred.

    Wessely believes there is a psychological component to ME/CFS. His friends and followers are what patients call the Wessely school; they also are invested in the notion that ME/CFS is perpetuated, in part, by things such as false illness beliefs and secondary gains. A lot of people believe that they've diluted the patient cohort to the point of meaninglessness by the way they've defined ME/CFS for their research purposes.

    Their definition is called the Oxford criteria, and it excludes the most important defining symptom of ME/CFS: post exertional malaise. So they may be netting a lot of people in their studies who are just tired but not necessarily ill. A better criteria is the Canadian definition below.

    Here's a little diagram to help you understand:

    [​IMG]

    Now here comes the part that inspires all of the anger: the suggested treatment is graded exercise and a form of psychotherapy called "cognitive behavior therapy". For people with ME/CFS any aerobic type exercise, especially graded exercise, is going to be a horrible, uncomfortable experience that will make them worse. Because the Wessely school has a bunch of peer reviewed papers showing clinical response to their rehabilitative style treatments, they claim that their hypothesis and treatments are science based or evidence based. In reality, it's bad science because they've stacked the deck by using the Oxford criteria in their research.

    The fatigue treatment clinics in the UK are set up with graded exercise and CBT. Many patient accounts of being permanently set back or damaged from their experiences go unheard or dismissed.

    Patients see Wessely, a psychiatrist, as the catalyst for shifting ME/CFS research away from being considered a disease of exercise to a somatic disorder. Decades of time and millions of pounds in research money have been wasted.

    There's a lot more to it but that's the gist. As an American I'm happy to be far away from the long arm of Wessely's treadmill. :)

    Thank you for your curiosity.
  12. lansbergen

    lansbergen Senior Member

    Messages:
    1,076
    Likes:
    527

    Are you from layscience.net ?
  13. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    Hi Martin, and welcome to one of the most diverse, ordered, constructive, and open-minded forums you might encounter.

    I'll try to take your points in order:

    What are "you guys" about ?

    This is answered by the URL "about mecfs". We are for the most part either sufferers of ME/CFS (chose your term, I'm afraid, as the med.profession can't agree on one), or carers of sufferers.

    Why do we support Myhill ?

    Sorry, I have to confess to not knowing a lot about this, but I suspect it's because Dr.Myhill acknowledges a physiological explanation of ME/CFS and attempts to treat it accordingly.

    What is the deal with Professor Wessely ?

    Mr.Wessely maintains that ME/CFS is explained by a malfunction of the brain, and that it can be resolved by addressing this malfunction. It is difficult to understand what this model is based upon, as there certainly doesn't seem to be any supporting science or evidence. Some people report recovery from ME/CFS using a technique called the Lightning Process, and the anecdotal evidence from this would seem to support Mr.Wessely's theories. Independent surveys suggest that around a third of ME/CFS sufferers gain some improvement from this approach, so it seems that a minority subset of the ME/CFS population may conform to Mr.Wessely's model of the condition.

    "The deal" (forgive me if I've not fully understood that thechnical term) is that the findings in a minority subset are often incorrectly extrapolated to include the whole set.

    Girlfriend with CFS and frustration

    Apologies Martin, I'm not sure I understand the point. Is that you were frustrated by your girlfriends limited energy?

    Mr.Wessely seems genuinely concerned about CFS

    Yes, understandably so. He obtains a large part of his income from insurance companies who are terrified of the potential liabilities of crippling infectious disease.

    Mr Goldacre and Forum

    I can't comment with confidence as I don't know the facts. However, if it is true that Mr.Goldacre has initiated a forum which does not operate in a fair, unbiased and empathetic way as this one does, then he has a duty to visit it and moderate it. If He has no connection with the forum then I apologise.

    Equal opportunity sceptic

    Apologies again, does this mean that you are sceptical about equal opportunity? A personal view is that we are not all born equal in terms of ability, but that we all deserve equal opportunity, therefoe I can't understand scepticism about equal opportunity.

    Alternative Medicine, Homoeopathy etc.

    ME/CFS sufferers (and others) do tend to seek out alternative medicine due to the inadequacy / inefficacy of conventional medicine. I have found most of the patrons of this forum to be generally both intelligent and open-minded, therefore in respect of homeoopathy specifically, due to an absence of a scientific foundation, I would expect a healthy scepticism about its efficacy, particularly in respect of a condition such as ME/CFS.


    Primarily, apart from the opportunity to offer each other mutual support and friendship, most of the members of this forum seek the truth. The psychological explanations of ME/CFS seem to have flourished, almost by default, in the absence of sound physiological ones. It may even turn out that it iis not productive to make this distinction, but this can only be concluded through quality research and analysis.

    As Einstein said, Everything should be made as simple as possible, but not simpler.

    ATB, Martin
    Steve
  14. Esther12

    Esther12 Senior Member

    Messages:
    5,267
    Likes:
    5,474
    Sorry to be the bearer of bad news - you're going to have to do a lot of reading if you're really interested in this stuff. I'd suggest reading Wessely's papers in chronological order (his earliest ones are the ones which provide a clearest example as to why he's disliked. I think he describes them as 'blunt'.)

    This is going to be a touchy subject here (I recently started a thread to encourage one of the psychologists which apparently lurk here to post, and it didn't go well), and you might not see people at their best. It's kind of like asking the Palestinians about Israel.

    re the rest of this thread: That bad science thread looked terrible. Some people were making good points, but most BSers and CFSers were just talking past each other. The CFSers were posting some rubbish, and the BSers didn't really seem to have any genuine interest in understanding CFS, or why so many patients are het up about these things.

    The BSers did bash some of the CFS arguments I dislike, but they also did some of the typical loathsome stuff I hate: "Ho ho ho - those CFS patients seem to have plenty of energy for forum debates! LMFAO!" Usually followed by: "They've stopped replying? They must have realised they were wrong." Another good 'un is: "I don't understand why they think there's a stigma to mental illness - maybe that's why they're so resistant to everyone just assuming they're psychologically disturbed?"
  15. biophile

    biophile Places I'd rather be.

    Messages:
    1,387
    Likes:
    4,584
    As an equal opportunity skeptic who appears to be polite and reasonable, poster "mjrobbins" should be concerned about the cognitive biases, logical fallacies, and hypocritical pseudoskepticism that are routinely directed towards the ME and CFS patient/advocate communities. Watch how much the standards of skeptical inquiry will drop during "biopsychosocial" and mind-body discussions about ME/CFS, I think it tarnishes the reputation of critical thinkers everywhere.
  16. Min

    Min Senior Member

    Messages:
    1,190
    Likes:
    1,202
    UK
    The Bad Scientists (says it all) have deliberately started several threads in order to lampoon us, and to keep regurgitating Michael Sharpe etc.'s views that we are refusing to accept we have a mental illness.

    it seems best just to ignore them and let them wallow in their own mire.
  17. Gerwyn

    Gerwyn Guest

    Hi MJ
    More about Wesselly,s issues

    Two psychiatrists meet on the street. One says to the other,
    "You know, I thought I'd been completely analyzed, but yesterday
    I experienced the most remarkable Freudian Slip."

    The friend nods and waits to hear more...

    The first psychiatrist continues, "I was having dinner with my
    mother, and I meant to say, 'Please pass the butter', but instead
    I said, 'You miserable bitch, you've ruined my life!!!".

    Now there is many a truth told in jest.

    What do you think of the hypothesis that Dr Simon's anger towards his mother has generalised to all females and is manifesting as misogyny.Perhaps sufferers are activating his parental model and he is treating ME sufferers as he was treated.

    Of course as psychiatry is totally an atheoretical enterprise this might well not occur to him. He may well be in need of some CBT. Oh hang on that would be useless here we are talking about a potential cure.

    Finally

    "I'm treating a patient with a split personality," boasted a psychiatrist, "and Medicare pays for both of them!"

    Do you think this may be an additional explanation for Simon Wesselly,s interest in people with chronic fatigue.He can dream up labells and be paid by isurance companies for his trouble.I am given to understand that he works for a number of insurance companies with a vested interest in classifying ME/cfs as a mental disorder

    P.S according to the critrea advocated by the late great thomas Kuhn psychiatry can never qualify as a science because of its inability to make accurate predictions or any sustained ability to probem solve.

    As you are so adept at exposing people who practice pseudoscience i thought you might want to run a campaign against this group in the Guardian
  18. Gerwyn

    Gerwyn Guest

    Hi MJ

    More ammunition for your Guardian article:

    This seems to sum up the opinion of real doctors towards psychiatrists

    A man who thinks he's George Washington has been seeing a psychiatrist. He finishes up one session by telling him, "Tomorrow, we'll cross the Delaware and surprise them when they least expect it." As soon as he's gone, the psychiatrist picks up the phone and says, "King George, this is Benedict Arnold. I have the plans."

    This would seem like an useful introduction to your article.I hope it helps

    best wishes
    Gerwyn
  19. Knackered

    Knackered Guest

    We aren't fatigued. Being ill with ME is like waking up with the flu one day and feeling that same way every single day for the last 6 years. Imagine trying to do any physical activity with the worst flu you've had, that's what it feels like, not only that, I get god awful pains in my joints and I'm constantly nauseated, it's hell on earth. I'm a 26 year old male who's been ill for 6 years now, I had a job and I was studying towards a degree, I'm stuck in the house most days now because of this illness, it's not a joke and it's not funny, my life's been taken from me.

    Our illness is going to be shown to be caused by a retrovirus (XMRV), the same type of virus that causes AIDS, if you're interested get in contact with Dr Judy Mikovitz: judym(at)wpinstitute.org

    Please read this:
    http://www.iacfsme.org/Portals/0/pdf/IACFS-Attachment4-April2010.pdf

    Edit: One more thing, a few of us on this forum are in a study to show XMRV is in the UK, if you want to know more about it just ask or look here: http://www.xmrvweb.me.uk/

    I haven't been tested yet but I suspect I will test possitive, there are many members on this forum who have.
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,795
    Likes:
    521
    UK
Thread Status:
Not open for further replies.

See more popular forum discussions.

Share This Page