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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Why few dare tackle the psychology of ME

Discussion in 'General ME/CFS News' started by Firestormm, Sep 24, 2012.

  1. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I acknowledge my overstatement ! :D The website differential is certainly something to consider, although it would have to be very significant given the under/over age 45 readership breakdown of 17% versus 83% and the 87% versus 13% social class split, given here: http://www.nrs.co.uk/toplinereadership.html . But this is anyway (if ironically) a demonstration of the key thing I was trying to get at - which is understanding the audience; I'm more than happy to acknowledge that my own perspective and prejudices make a me poor communicator in a context that is Daily Telegraph friendly, and while I could probably do a reasonable job, it would take effort and familiarisation, and if I were going to attempt it, I would happily be guided by someone who is familiar with the territory. But - Fire - can I leave the Telegraph to you, and I'll concentrate on the foul mouthed pinko liberal sceptics ?:p

    IVI
    Firestormm and Enid like this.
  2. Bob

    Bob

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    Yes, it is a bit of a problem, while it's still published in the Lancet commentary.

    But a clarification was issued, by the authors, stating that the recovery data has not been released:

    "It is important to clarify that our paper did not report on recovery; we will address this in a future publication."
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60651-X/fulltext


    Note that Pemberton's alteration, in his article, changed the wording to "improved or recovered", and this has a different meaning to just saying "recovered". (But he might not be aware of the reasons for the alteration, as I doubt if he has analysed the PACE Trial paper himself.)
    However, as biophile pointed out, his "30%" improvement rate is most-likely based on the 'normal range', which does not actually indicate an 'improvement'. He also has not taken into account the control group, so the "30%" figure is for SMC+CBT and SMC+GET.
    currer likes this.
  3. Esther12

    Esther12 Senior Member

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    I'm in two minds about this. Personally, I don't like it when other people claim to be speaking on my behalf, and I try not to claim to know what any mass of people think (especially as diverse a group as CFS patients), but successful 'movements' often do use this sort of language, and it could even be a necessary part of their success.

    It is acceptable to say "Gay people just want to have the same right to marry as everyone else", and this is probably a more compelling political point than saying "Many gay people want to have the right to marry, some see marriage as a relic of patriarchal society that gay activists should be fighting against rather than embracing, some worry that gay marriage threatens aspects of gay culture which they always valued, etc, etc".

    If we could find a really limited and reasonable demand that really does unify almost all patients diagnosed with CFS then I think that would be a really helpful rallying cry and political tool.

    It looked to me as if the 1000s referred to recent tweets, but it could have just been hyperbole.
  4. currer

    currer Senior Member

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    I intend to take an individual viewpoint here, and say how pleased and proud I am of the ME community that it will stand up for itself against sloppy distortions and misrepresentations in the press.
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  5. Bob

    Bob

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    Maybe it's a reference to last year's experience.
    Unless there is something wrong Twitter at the moment.
  6. user9876

    user9876 Senior Member

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    I assumed it would have been done by the editor or at the request of lawyers.
  7. Jarod

    Jarod Senior Member

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    Some random thoughts on how to deal with Media and Medical extremists (rascals).

    More often than not, it's safe to assume the rascals who write inflammatory articles/research are sociopaths at the very least. They don't feel empathy or remorse for upsetting people with their damaging articles or research. If they receive nasty emails, it doesn't hurt them at all.

    At the most, a thousand response emails to a rascal probably just takes time away from these sociopaths running some other scheme.

    Sociopaths can lie and make people believe it. They can't feel remorse. They manipulate. It's a serious human defect that allows these people to do things nobody else can do.

    The really bizarre thing is, many of these rascals are elevated (by rich and powerful people) to goverment and senior corporate positions for their unique ability to do dirty work average people simply can't do and live with themselves.

    Who else but a sociopath could write an article just to brainwash physicians and the public into denying proper care for a person?

    So how can one deal with a sociopath? Don't support them financially by clicking on their garbage? Expose them? Boycott them and their supporters? Call and contact the media outlet publishing that crap.

    I think education, understanding, and truth matter. If everybody simply knew the truth, the sociopath program would not work. For every sociopath, there are 99 normal people who have to help execute those plans. So if the 99% knew what the program was, the whole mess would not work.
  8. Esther12

    Esther12 Senior Member

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    I don't think I'm proud of any community, but I think that XMRV has been good for encouraging a lot of CFS patients to think more seriously about how science works, discuss what we should expect from medicine, doctors, etc. I thought that there were quite a lot of good and reasonable responses to Pemberton. As others have said, any group of patients is going to have some people who believe outlandish things, and generally that isn't taken to reflect poorly upon cancer/MS/HIV patients as a group. One problem though: it sometimes seems like the people making the most cringe-worthy comments are also the most active. It sounds like there's only one person still arguing for the notion that XMRV causes CFS... but they seem to make as many comments on websites as everyone else put-together!
  9. currer

    currer Senior Member

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    Everyone knows that extreme viewpoints make the most noise.

    That applies to Pemberton and his extreme views too!

    As a journalist he ought to be able to take criticism and extremism in his stride.
    Jarod likes this.
  10. alex3619

    alex3619 Senior Member

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    Here is something for people to think and debate about. I am still not fully decided on this.

    There is a problem with the angry comments on Max's articles. There are not enough of them by far. A few hundred comments is an issue, but wont have an impact. What about 10,000? What about 100.000? A few isolated angry individuals get ignored, or denigrated. Does this happen to a million?

    My general viewpoint, currently, is that the scientific replies need to be cool, rational and link to research. The general political reply however needs to be angry. An angry individual is a crank. An angry large population is something that needs to be responded to.

    Surely they will just close down the comments if they get deluged. This is obvious. However if they are deluged by emails, letters, and complaints to the press council, in the hundreds of thousands?

    The arguments used against the ME community are mostly political from what I see. There is reference to science but the science frequently does not substantiate the claims. So there is a very strong need to both scientific and political responses against the claims made.

    Bye, Alex
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  11. Enid

    Enid Senior Member

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    Still hoping he will take his own advice and keep his head "below the parapet":rolleyes:
  12. biophile

    biophile Places I'd rather be.

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    alex3619. Your post reminded me of the following that occurred around the same time Horton of the Lancet was complaining about being swamped with dozens of letters. A ridiculously flawed article was published claiming that research demonstrated that black women were less attractive to others. 70,000+ complaints were lodged from people identifying with or supporting the black community, then the article was taken down. I can only imagine the justifiable anger that would of also followed if some shock jock journalist then tried to weigh in on the controversy by suggesting that the strong response was harassment not arising due to study flaws or offense but merely because of the way society views beauty and the implication or stigma involving how appearance defines our worth as a human being, then stoking the fire further by claiming that it was quite a reasonable explanation but nothing could have prepared them for what happened next.

    As a pre-emptive clarification, I hope people do not misinterpret this post as me claiming that the medical establishment is oppressing the ME/CFS community in the same way black people have been oppressed. alex3619's earlier point about how protestors in numbers can be effective, just reminded me about this example. Also, further protest is what naturally happens when observers weigh in with questionable explanations for the motives of protesters. On the issue of ME/CFS, Pemberton has stepped into a several decades long controversial and complicated festering cesspool of patient suffering and socio-medical neglect, offering amateurish and sweeping generalizations which have been used ad naseum to automatically dismiss the criticisms regarding flaws in research studies or the claims being made about patients.
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  13. Esther12

    Esther12 Senior Member

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    We have to take account of the very different cultural attitudes which surround CFS.

    When lots of people get very angry about an issue regarding race, it is not acceptable to dismiss them as mentally disturbed.

    When lots of people get very angry about an issue regarding CFS, it is acceptable to claim that this is evidence the CFS is a mental health problem, and that their anger can be assumed to be unreasonable.

    It's not fair, but there you go. Irritatingly, it's entirely reasonable to be very angry about this, so I'm not sure where that leaves us.

    Also... the 'angry black man' stereotype was around for a long time, and widely used to dismiss the problems faced and complained about by African-Americans. It's taken us a long time to reach the point where it is widely acknowledged that people of different races should be treated with equal respect.
  14. Firestormm

    Firestormm Senior Member

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  15. alex3619

    alex3619 Senior Member

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    The cultural view toward drug uses and the gay community was at least as extreme as against CFS and ME. Anger in large numbers, plus science, plus good campaigns and arguements, eventually led to recognition of AIDS/HIV and some respect. Research dollars followed.

    Anger is not the problem, in all likelihood. Lack of numbers is the problem. We just need to keep anger out of science and keep it in the politics.

    Bye, Alex
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  16. Esther12

    Esther12 Senior Member

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    We're missing the science bit. If it was something 'simple' like XMRV causes 2/3s of the cases of CFS, and this science was solid, then I think widespread expressions of anger could be helpful. Now? Not at all.

    (That's not to say I'm necessarily opposed to expressions of anger - I'm sure that I sometimes write in a way which is testy and irritable in an unhelpful manner. There a lot of infuriating stuff around CFS. But I don't think we should think that patient anger is helpful to us at the moment, that seems very unlikely to me).
  17. alex3619

    alex3619 Senior Member

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    I don't know that we are missing the science bit Esther. There is no proven cause for MS, nor diabetes, nor many other diseases. In every case what we have is pathophysiology and mechanisms. A lot has been learnt about ME pathophysiology in the last few years. The evidence for a number of biomedical theories of ME is so very much stronger than the evidence for a psychiatric causation, perhaps more than an order of magnitude stronger as I have discussed elsewhere. For one thing the biomedicine has physical objective evidence. Even if you think that is not enough, the psychiatric hypothesis has ZERO objective evidence.

    Bye, Alex
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  18. Esther12

    Esther12 Senior Member

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    I'm doubtful. Perhaps I need to be educated, and there have been some hopeful developments over the last few years, but I think we're a really long way behind MS and diabetes. I'm still expecting lots of different causes to be found for the illnesses of those given a diagnosis of CFS. A lot of findings (biological and psychological) seem likely to be secondary to me (at least, for some people). I know I don't follow biological stuff as closely as many people here, but there don't seem to be many killer papers - more often possible hints at areas worth investigating instead.
  19. alex3619

    alex3619 Senior Member

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    Yes Esther, we are behind MS and diabetes in many ways. MS was however in the same situation a few decades ago as we face now. They were "hysterical women". That attitude is now just history. Bye, Alex
  20. Mark

    Mark Acting CEO

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    I agree and understand that of course, but I think that's a much more difficult point to get across to the general public than the issue I was focusing on. You've expressed it very well indeed in this quote, and that's certainly a point worth making. I just think that in an article like that one in the Telegraph, highlighting the fact that the classification has a dramatic financial effect on medical insurance is more likely to have an effect. It's a fact, people aren't aware of it and they should be, and it clearly gives the lie to the idea that patients' concern about the issue is irrational.

    Particularly when the likes of Wessely and White make the claim that patients are being naive and old-fashioned about 'mind-body dualism', it seems to me that it completely undermines that position when you point out that the people who are saying this are fully aware that a clear financial distinction is made between 'mind' and 'body' classification - and that they are fully aware of this because they are being paid by the very people who would have to pay out if ME were put in the 'body' side.

    The thing is, this point about insurance is an incontrovertible fact. It's utterly disingenous and misleading for Wessely to make this argument that the distinction between mind and body is old-fashioned, and he is then completely exposed when you point out that he knows perfectly well that the distinction is made by organisations that he and his colleagues all carry out work for, and that this distinction means they don't have to pay out purely because it is classified in this way. For me, that is an absolute killer argument: there is simply no disputing it. It exposes the psychiatric lobby arguments about mind/body dualism as pure hypocrisy.

    It may not be the most severe effect of the classification on most of us - well, it isn't - but it's a bottom line that exposes the psychiatric lobby's position - it's an incontrovertible fact that completely exposes their comments about mind/body dualism as a philosophical smokescreen to hide the financial realities. If we're trying to change opinion and win hearts and minds, we should be thinking more about what arguments are most effective, and less about what factors are most significant to us. We really need to be very pragmatic when thinking about what messages we want to project when we're entering the public debate. I could be wrong, but I think this particular point is the killer argument about the mind/body subjects this Telegraph article is pushing, so I'm suggesting that we should focus a bit more on getting that key fact across. The beauty of it is: it is a highly relevant fact, and it's one that people thinking about this issue are completely unaware of. If more people realised this was the case, I think that would change perspectives considerably.
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