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BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

Discussion in 'General ME/CFS News' started by Firestormm, Jun 18, 2014.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    This incident reminds me of complaints made in early 2005 concerning the wording of two job vacancy advertisements for therapists for two NHS CFS services.

    The first, a vacancy for a Trainee Clinical Fatigue Therapist, Royal Liverpool & Broadgreen University Hospitals NHS Trust; the second for a Highly Specialist Clinical Psychologist in Chronic Fatigue Syndrome Management, Epsom and St Helier NHS Trust.

    Complaints about the wording of these job vacancy ads were lodged by patient org reps (via Chris Clark, AfME's then CE and at that time, Convener of the since disbanded, M.E. Alliance), but also by individuals.

    Formal apologies were issued by Dr Fred Nye (at the time, Clinical Champion, Liverpool ME/CFS Clinical Network Co-ordinating Centre) and NHS officials and the Liverpool job vacancy ad was withdrawn.

    But concerns about the culture within these clinics that was evident in the framing of these job vacancies and the implications for patients referred to these services remained.

    I won't post the text of the job vacancies, here, but I have a copy, here, on Twitlonger, for those not familiar with this 2005 issue.

    These job ads are chilling, contain useful material for quoting from, and are worth a skim.

    Archived material from January 2005: Job vacancies: CFS Therapists: NHS CFS services:

    http://tl.gd/n_1s279rl


    A copy of the apology issued by Dr Fred Nye on behalf of Liverpool ME/CFS Clinical Network Co-ordinating Centre can be found towards the bottom of this page, on M.E. Support-Norfolk site, under the heading:

    "The Liverpool ME/CFS service: an apology":

    http://www.sayer.abel.co.uk/MESNORFOLK/Letter_To_Dr_Nye.html
     
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  2. chipmunk1

    chipmunk1 Senior Member

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    did you ever read some of the doctors manuals on how to deal with somatisation disorders?

    if you read between the lines they say: It's all in their head but don't make them feel like it is so they comply with treatment while you treat them like a headcase.

    All these apologies mean nothing in my opinion they are just part of their treatment philosophy:

    making the patient feel like they are taken seriously so they comply with treatment.

    It all comes down to: We are the doctors and we know what we are doing and the patient doesn't know what's going on.

    They simply believe this crap because the textbook or the manual says so.
     
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  3. PennyIA

    PennyIA Senior Member

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    I'm still of the mindset of the folks 'cured' by electro-shock therapy of all kinds of illnesses and ailments back in the 1800's and early 1900's... in my mind? I'm betting at least 75% of those who recovered SAID they had recovered and did their best to hide the fact that they weren't.

    After all, if you tell the people torturing you that you don't need to be tortured any longer? The torture will stop.

    I don't know about all of you... but I would lie and then lie again and lie some more if it would get me out of GET.

    Just sayin'
     
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  4. Nielk

    Nielk

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    Yes. We have all "chosen" this meme syndrome because it serves us so well!

    I can't imagine a better life and hope to never revert back to my pathetic "normall" previous life full of accomplishments.

    I get a real kick out of being totally humiliated each time I tell someone/ healthcare provider that I suffer from this meme.

    Losing contact with most of my friends/family has been just icing on the cake.

    My only surprise is that there are not millions of others who have heard/read about this meme and have not chosen it for themselves.

    In addition, because I dread so much a possible recovery of this much desired state, I tell myself daily confirmations- "Yes, I do suffer from ME. Certainly, I suffer from ME. Please, God, keep me suffering from ME."
     
    Last edited: Jun 27, 2014
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  5. Scarecrow

    Scarecrow Senior Member

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    I seriously doubt it. Edinburgh was one of the participating centres. I attended there in autumn 2011. Despite the initial PACE trial paper having been published earlier that year, they were free and easy with their un-facts, i.e. the paper didn't claim that pacing was harmful, nor did it claim a 90% recovery rate. They knew. They were at it.

    They (Essex CFS service) know, too. They're at it.
     
    Last edited: Jun 25, 2014
    Min likes this.
  6. Dolphin

    Dolphin Senior Member

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    I know of a teenager who told me just that (they said they were better so they wouldn't have to go back to a psychiatrist). I mentioned it on Twitter once and Jane Colby said she knew of people with ME (possibly all children, I can't remember) who had told her they had done the same thing too (said they were better to get out of therapy).
     
    Last edited: Jun 25, 2014
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  7. Scarecrow

    Scarecrow Senior Member

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    @Sasha, always go with your initial instincts unless you know they were wrong.

    Sam Lewis, GP Trainer, was mocking his patients. If they have 'ME' there's nothing wrong with them (other than false illness beliefs) so it's easier to humour them than [edited typo] argue with them. I think you were spot on with your interpretation of his first two statements. His third statement was to suggest that people with 'MEME' have got a double dose. Funny.
     
    Last edited: Jun 25, 2014
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  8. Sasha

    Sasha Fine, thank you

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    Genuinely can't make sense of it on a re-reading. The more I read it, the more bizarre it looks.
     
  9. chipmunk1

    chipmunk1 Senior Member

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    if this meme is so contagious how come that CBT therapists and doctors don't get infected with it?
     
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  10. Scarecrow

    Scarecrow Senior Member

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    Absolutely. I used to lie to my GPs out of politeness so that I wouldn't hurt their feelings (stopped that now) but I do wonder to what extent the medical profession are aware that their patients lie to them all the time for all sorts of reasons, including self preservation.

    So the 'fatigue clinics' are lying to their patients and their patients are lying right back.

    That's yet another reason why the PACE trial, CBT and GET and the subsequent spin are all such a joke. Very little in the way of objective measurements and the results were desperately disappointing for the BPS proponents.

    If there had only been one more before and after question in the PACE questionnaires. 'During the past 12 months, have you lied to your doctor about your symptoms?'
     
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  11. alex3619

    alex3619 Senior Member

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    @Scarecrow, I have have liked one further question: "During your treatment, do you believe your doctors and therapists have ever lied to you?"

    Objective measures are critical. CBT/GET interventions cannot stand as scientific without objective outcome measures. The underlying theory however probably can't be made scientific no matter what they do. That doesn't mean it cannot be made more rigorous, but that starts with questions ... they need to go back and question all their assumptions to start with.
     
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  12. Scarecrow

    Scarecrow Senior Member

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    Well yes, I suppose. But if more people believed their doctor lied to them during treatment than before treatment, and the results of treatment were otherwise so poor, couldn't that be construed that ME/CFS is the result of false illness beliefs and that furthermore the patients are also paranoid?

    I mean if I had to endure APT rather than 'normal' pacing, I'm not sure there would be much difference between my responses to APT and my responses to GET or CBT. That just leaves SMC. Hmmm, anyone have all that much confidence that there was a true control group in PACE?

    Otherwise, agreed.
     
    Last edited: Jun 25, 2014
  13. alex3619

    alex3619 Senior Member

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    Actually, PACE had two lame control groups. First, their version of pacing was so bad that even though I pace I would never do what they said .. it was nonsense pacing. SMC is also lame ... how many patients would agree that standard medical care, in any form, is of any value in ME? A head to head comparison, based on subgroups, would have been better. For example, would patients with reactivating herpes viruses do better on antivirals or CBT? That is kind of rhetorical, as the evidence already clearly favours antivirals, with an order of magnitude better response rate.

    Selecting lame controls helps make a treatment look good. Even with lame controls they got such pathetic results though.

    This is one of the issues with psychological intervention. There is no placebo group. Ditto for exercise intervention.

    In some ways, pathetic as it is, SMC is about as good as they can get with current options. Yet its still lame.

    The real tests will be in the future, with things like CBT being compared with real biomedical treatments. They wont be able to so easily spin their results then.
     
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  14. alex3619

    alex3619 Senior Member

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    They are psychs, misconstruing is what they do if they are not careful. Yet we are faced with a dilemma in this research. The doctors lie. Its a part of these kinds of studies. Some or all of the treatment arms often contain things that I would call a lie. Yet the study does not ask the doctors what they think, nor does it ask independent assessors to determine the veracity of what the doctors were saying. Asking the patients gives a clue, but no more than that. Furthermore, if as I suspect the patients getting CBT would have said more often that they were lied to, then it begs the question: how come its the psychobabblers that were perceived as lying. Of course their replies would probably be something to the effect that patients were resisting psychiatric intervention, a pathological feature of ME in their model.

    This goes to trust. I wouldn't trust doctors spinning me psychobabble, or extolling the virtues of poorly designed exercise programs. I would much rather doctors were grounded in reality, and admitted they did not know, did not have any idea about treatment, etc. Pragmatic rehabilitation, if that is what they claim they are doing, has to be grounded in realistic claims, explanations and methods. It also needs objective outcome measures.
     
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  15. SOC

    SOC Senior Member

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    Firstly, this is a not a free speech issue, imo. This is a public/patient safety issue. For example, would we consider it simply a personal issue, and therefore not a work disciplinary measure, if a pair of teachers published a commentary that was extremely hostile and insulting to, and showing a complete lack of understanding of the children in their care? Should we not be concerned if a pair of oncologists wrote in BMJ RR that their cancer patients were whining fakers who didn't need or deserve chemotherapy, radiotherapy, or surgery?

    In both those cases we would be rightfully concerned for the innocent people in their care. The writers clearly demonstrate a mindset counter to providing safe and appropriate care of people in their charge. We should ask that those people not be allowed to be responsible for vulnerable people ever again. Why should we consider it any different with PWME?

    Secondly, (in the US, at least) the right to free speech does not protect you from the consequences of your ill-judged speech. The right to free speech protects you from the government punishing you for making statements it doesn't like. For example, you cannot be jailed for saying Congress is a bunch of disconnected, ill-informed, self-serving morons who couldn't run a coffee shop much less a country. That does not mean people can't be furious at you and refuse to associate with you because of the obnoxious things you say.

    The right to free speech does not protect you from the consequences of having pissed people off. It does not protect you from being arrested after telling the world on FB or YouTube that you committed a crime. Finally, and most relevant to this case, you are not protected from being fired because you showed yourself unsuitable for your job.
     
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  16. biophile

    biophile Places I'd rather be.

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    Helps to explain why key proponents are so eager to dismiss objective measures as irrelevant to recovery, when objective measures indicate major impairments which do not improve after CBT/GET.

    One NSS (No Shit, Sherlock) step to increase rigor with subjective measures would be to stop using a recovery goalpost lower than the benchmark for disabling fatigue, and use one based on healthy age-matched controls!

    Indeed. It is natural to distrust those who spin or lie, even if supposedly for our benefit. Sooner or later patients suspect a deception when the model sold to them fails them or sounds dubious. Then trust is lost and is difficult to get back.

    "Pragmatic rehabilitation" in the FINE Trial: "There is no disease. Go for 100% recovery!" etc.
    Not surprisingly, it failed in practice, not so pragmatic after all.
     
    Last edited: Jun 25, 2014
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  17. alex3619

    alex3619 Senior Member

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    @SOC, organizations do have the right to free speech, as do individuals. That includes us. So when we are abused, when things fail, we have the right to say something about it. Free speech, at least in this country, also does not mean one can vilify communities or groups with highly prejudicial statements. That includes PWME.
     
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  18. Cheshire

    Cheshire Senior Member

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    I would add a mental condition. I don't think any psychiatrist would dare to compare depression to a meme. But with ME they think everything is allowed.
     
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  19. alex3619

    alex3619 Senior Member

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    [Putting on my black hat] But depression is real! ME is only made up! You can say anything you like about made up diseases, they are not real, its all fairy tales anyway. [Taking off my black hat]

    When an illness is not understood, and someone is thinking about it without being aware of the research, they can come up with almost any idea. In theory the really out there ideas should be eliminated by review processes, but in practice articles like this were not reviewed, and reviewers can be just as biased as researchers ... indeed they are usually researchers in the same area of research.
     
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  20. Sasha

    Sasha Fine, thank you

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    Interesting answer in the House of Lords to the Countess of Mar's question about whether a patient can choose where they're treated (short answer: yes, they can, as long as it's an appropriate place):

    http://www.meassociation.org.uk/201...-their-own-choice-of-consultant-24-june-2014/

    The 2014-15 NHS Choice Framework establishes that if a patient needs to see a consultant or specialist as an outpatient for a physical or mental health condition, they can choose the organisation that provides their NHS care and treatment anywhere in England for their first outpatient appointment. They can also choose which consultant-led team or which mental health team led by a named health care professional will be in charge of their NHS care and treatment for their first outpatient appointment.

    The organisation can be any clinically appropriate health service provider with whom any clinical commissioning group or NHS England has a commissioning contract for the service required as a result of the referral, but the team must be clinically appropriate and led by a named consultant or health professional who is employed or engaged by that health service provider.​

    If I were an ME patient in Essex and remotely capable of travel, I'd be exercising my right to go anywhere but the Essex CFS Centre.
     
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