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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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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. biophile

    biophile Places I'd rather be.

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    Firestormm. As you said, these articles on supposed ME militancy do limit the accusations towards a small minority or supposed fringe element. You wonder why some patients/advocates have objected even to that notion? In a previous post I explained why I take personal issue with it, but as for others, IMO it is because of similar reasons:

    1a) These articles do not clearly distinguish between, actual harassment and criminal activity, vs, legitimate criticism/objections. I wanted to say that these are all mixed and presented together, but it is worse than that because the possibility that claims about psychological factors in ME/CFS may be genuinely flawed is never entertained, and if anything, instead we have references to how the relevant authorities have dismissed all criticisms as groundless.

    1b) The overall message, whether explicit or alluded to, is that anyone who criticizes claims about psychological factors in ME/CFS is a deranged extremist militant without any credibility, who stifles scientific research, driven by the fear of the stigma surrounding mental illness as not real, naive Cartesian substance dualism, secondary gain, abnormal illness beliefs, personality problems, etc. Meanwhile proponents are presented as good honest hard working people who just care for ME/CFS and want the scientific research to go ahead.

    2) Due to the above, and the fact that no evidence is usually provided (outside anecdotes of people who are not trusted by some patients/advocates), some of them have, despite condemning criminal behaviour themselves, understandably have become highly suspicious about whether there is harassment and death threats going on, either at all, or to the extent that is being claimed. In the case of claims made by Lloyd and van der Meer, pseudo-"evidence" for extremism was an inflammatory reference to all 8 *published* letters in the Lancet in response to the PACE Trial, as personal and unscientific attacks. In contrast, AFAIK, you appear to be happy to assume at face value that all these claims being made about ME militancy are correct, so you just want people to focus on condemning ME militancy as described in these articles?

    Why should you be offended then? Well, in essence a bogyman has been created out of twisting together fact and fiction, and if you are pro-biomedical or publicly criticize Wessely et al's views on ME/CFS or object to a blanket application of CBT/GET etc, you have also been alluded to being a ME militant by association. And by automatically condemning ME militancy as described or hinted at in these articles, you could also be indirectly condemning yourself.

    I think Esther12 made an excellent point, IIRC, about how although she disagrees with many of the comments posted to these articles in question, she is not going to automatically throw people under the bus just so she appears to be condemning inappropriate behaviour, or unless she knows what they are actually guilty of first. I will not dispute that some of the comments could be better handled. However, the overall quality of the pro-ME/CFS comments do not seem to as bad as some are making them out to be. Can you please name the aliases of the people we should be speaking out against according to you?
     
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  2. Esther12

    Esther12 Senior Member

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    His comments aint good. Actually one problem - there's no way on Earth I would be willing to go through contradicting all of the points from 'ME Science' which I disagree with. This lack of criticism from patients can allow him to acts as if he speaks for us. Anyone want that job?

    More criticism from patients of patients in that sort of setting would be a good thing, but I have to admit that I'm somewhat inoculated against irritation of 'ME science', and would find it hard to be motivated to do that work.

    Bob: thanks for posting about 'search in thread' - I'd not noticed that tick box, so it had actually been quite irritating. (Your post about this has disappeared for me right now, but I'm sure it will be back)
     
  3. Bob

    Bob

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    You make some interesting points Barb.

    I just want to pick up on a small section of what you wrote, quoted above.

    I see this very differently to you.

    It seems to me that the psychiatric lobby (I'm thinking of one person in particular), has successfully created and propagated this 'narrative' about the ME patient community for a reason. Yes, other people, like Pemberton, have experienced a reaction from patients, and he has cynically used this to confirm his narrative. But remember that Pemberton is a hack, writing sensationalist articles, in order to gain a reaction. So it suits his needs to propagate the narrative, regardless of the overall picture. The stuff that he and the other Telegraph hack have published is a cynical and outrageous attack on a vulnerable minority, and shouldn't be lent any credibility.

    Michael Hanlon, the Mail blogger, seemed genuinely taken aback by the comments he received after his blog, most of which were highly reasonable, intelligent, and well informed. I was really impressed by them. Hanlon contacted the ME Association after his first blog, and then unsuccessfully attempted to explain himself in his next two blogs. So at least there was some attempt at community engagement, even though he failed to understand the issues. He was mislead by his sources, and I doubt if he'll write such an article about ME again.

    Back to the 'narrative'. I believe that it full-fills a purpose for a special interest group. Let's think it through: If we wanted to stop bright young biomedical researchers from entering the field of ME, how could we go about it? One way would be to scare them off, by saying that all ME researchers are attacked by an 'angry mob' of ungrateful 'militant' patients. Now, this is clearly not the case for most researchers or journalists, because we don't hear such stories from Poulton, Kerr, Klimas, Peterson etc etc etc. So the article does not portray the truth, but it's what we are being told is the truth.

    Pemberton may have just sensationalised a story, and may have no other interest. But clearly this is a narrative that is being propagated by the psychiatric lobby, which may have been a source for the general shape of Pemberton's narrative.

    If someone really wanted to change this alleged situation, involving alleged angry mobs of ME patients, how exactly would telling the world about it improve the situation? How could it possibly change anything? They can't stop the public from expressing themselves, just by raising such an issue in the national media. All they have done, is to highlight an alleged issue. But they are not actually highlighting a real issue, honestly. They are inventing a narrative that fullfills their purposes. They are misrepresenting the situation, massively, and cynically, by conflating many issues.

    This is not a case of patients behaving badly. This is a case of an invented narrative. It's a 'tool' designed for a specific purpose. I don't believe the narrative, and I don't think we should buy into it.

    The "damaging stereotype we are trying to avoid" is not perpetuated by our community, as you suggest, barb. It's a narrative invented and perpetuated by a special interest group, for their own ends. We should be challenging them, rather than buying into their propaganda and blaming patients for a problem that we have not caused. It is the misrepresentation of a disease and a patient population that is the problem.

    And we also shouldn't buy into the narrative about 'militant' patients. As we've discussed in this thread, many of us believe that our patient community has been misrepresented. If you look at the Tweets and the comments after the article, they are a bit messy, but they are not as they have been described. There's no evidence for illegal behaviour, or threats etc. And there was no actual explicit suggestion, by Pemberton, that there has been any illegal behaviour or explicit threats.

    When patients wrote to the Lancet, we were accused of a similar type of behaviour. Again, I'm sure that this was no coincidence, but it seems clear that it was because the Lancet were directly involved with the psychiatric lobby.

    Any patient who has ever written a letter, has now been misrepresented as being militant, angry, obsessed, paranoid etc. So it's us that they are talking about. All of us on this thread, and on this forum, not some other set of unknown patients. It's us that they are accusing of being an angry mob, etc. You and me.

    They don't distinguish between patients. We have all been labelled as having a personality disorder. They don't care about the real details. They don't care how reasonable we are, or what the facts are. It doesn't both them. Pemberton hasn't engaged with the community, on Twitter or on the comments section of his blog. He's not interested. Neither has Horton properly engaged with the patient community, apart from publishing a few responses in the Lancet. The Lancet's mis-information goes uncorrected.
     
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  4. Firestormm

    Firestormm Guest

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    Look chaps - 'militants' do not have to exist. Alright. You don't have to agree that they do. Or that the actions you are subscribing to them and they are being criticised for are the ones that you hold dear.

    We often (hell yes even little old me) make comments on articles in the paper. Articles that are not opinion pieces I hasten to add (as a rule) and including Rod Piddle of course - why inflate their ego's? But real articles then hell yes. Count me in and sign me up.

    "I am not a militant. I do not condone their behaviour. I find it disgraceful. Who are they? Well I don't really know... What do they stand for? Well I am really not sure..."

    "Is ME a mental illness? Prove to me that it is but you'll have to wait for me to prove that it isn't and anyway who cares? If it is you aren't doing enough to treat it and if you are it isn't very successful, because I'm still here having engaged with your therapies for over 15 years."

    I see that Bob included a quote previously from Nature attributed to Simon Wessley and that it mentions 'muslims' and 'the gay gene' in connection with the death threats received last year.

    Does anyone on this forum actually think he meant what he said or that this headline yesterday, should be taken seriously? That (let's assume Wessely) truly, honestly thinks 'Armed ME Militants' actually exist or that they are more dangerous than insulted fundamentalist Muslims?

    Ok I take that back. Of course you don't. Another example of 'let's poke the cage and see how the animals react'. Simon Wessely is 'mad'. I don't know him personally but based on comments that he presumably is happy to see plastered across the stratosphere - I do hereby conclude he is well and truly 'cuckoo'. I mean look at him for Gods sake.

    Are my comments to be taken seriously? Like f**** they are. But let's have a laugh at his expense anyway. I feel sure he will see the funny side.

    Do I wish that things were different? Of course I do. I don't like seeing Pemberton or Thompson or Piddle being able to feel justified in saying what they do. But I can't alter their reactions. I can't change how they APPEAR to view ME.

    You cannot afford to let this get to you in the way that some people (not them) have been saying that it has. There is a key symptom that comes with this condition. A very unfortunate one. Maybe a side-effect:

    - you have to develop a thick skin as do I suspect psychiatrists - not that I don't have something in my desk that will penetrate their armour :devil:

    p.s. Bob I apologise. Twice now on this thread I have posted things and not realised you'd already posted them. Such a dunce at times. Takes too long to review all the comments doesn't it? Still. Am up to date now I think.

    Double Edit:

    Aw shit now we've crossed posts. Buggar.
     
  5. Bob

    Bob

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    I have the opposite reaction to you, Firestormm. I get cross when I see articles like Pemberton's being published in a so-called 'quality' journal, because it is an abuse of authority and power. I think the hacks and the newspapers need to be held to account, through discussion and through any other legal means.

    But I am not so interested in the public comments, after the articles, because that's exactly what they are: public comments. People can claim anything in public comments, and anyone can get involved. So they should be treated as such. Readers can take from the comments anything that they find useful, and ignore everything else. That's how public comments are generally treated.


    What I genuinely can't understand, Firestormm, is how you can get so upset by the comments section, written by random members of the public, whilst being very relaxed about the actual article. I just don't get it.


    I think that the objections went wider that those who "see themselves as extremists", because of the conflation generally employed in these articles.

    I don't know how you missed the denigration of an entire community. Firstly, we are all explicitly accused of having personality disorders, and all sorts of other related psychiatric issues. And then there is the conflation of legitimate comment, with alleged harassment and with alleged potentially illegal activities (but not any actual illegal activities, in the case of Pemberton.)


    Personally, I'm not usually aware of any 'harassment'. How would I know about it?
    In any case, as I have said before, one person's harassment is another person's legitimate lobbying. So we need to be specific about what we mean by 'harassment', before we can condemn it.

    I'm also not aware of any illegal threats, or any specifics of any illegal threats. I've never come across any. Of course I would condemn, and report them, if I came across them. I sure that most of us would.

    As for being 'horribly slagged off', yes, this can be ugly. I haven't enjoyed watching the XMRV scientists being horribly slagged off, but there's little any of us can do about the public discourse. I'm certain that most of those who are doing it, believe that they are justified. Of course, indignant criticism can easily cross over into 'horribly slagging off', so it's to be expected sometimes, if unattractive.
     
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  6. user9876

    user9876 Senior Member

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    I generally read the guardian rather than the telegraph and sometimes read the comments sections. The overall structure of the comments seemed quite normal to me (appart from the Islamaphobia). You normally get a range of comments, some interesting, some personal, some stupid and typically you get one or two obsessive individuals who comment alot. Infact in the blog comments someone complains about the blog being taken over by people talking of ME and others comment that she normally takes over the comments on the blog. People enjoy commenting and discussing.
     
  7. Firestormm

    Firestormm Guest

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    Bob I'll have to come back to you on all of that. Need to take a break now. Sure you understand. What a morning.
     
  8. Bob

    Bob

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    You welcome, Esther. I can imagine it was very irritating! It's a very useful function, isn't it.

    Reposting, in case helpful:

    The 'search this thread' option is still here, Esther.
    In the drop-down search box, at the top-right of each thread, there's a tick/check box labelled: "search this thread only."

    Note to self: I've also just noticed that there's another tick/check box which is already ticked, which means that any search is limited to a single sub-forum ("search this forum only"), which I'll have to watch out for.
     
  9. currer

    currer Senior Member

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    It is quite simple.
    It is obvious to any unbiased observer that PWME are genuinely sick.

    A psychatric etiology can only be maintained if research into our disorder is deflected into other areas or directly blocked - as has happened repeatedly with the MRC funding.

    This is why unbiased medical interest in ME is threatening to the psychs.

    This explains the effort put into publicly misrepresenting us as unbalanced and psychotic, a danger to any good, well meaning doctors who wish to develop a research interest in this field.

    The damaging stereotype about us is always brought to public attention whenever research interest in ME reawakens.
    "It's a narrative invented and perpetuated by a special interest group, for their own ends"

    And I think this misrepresentation has worked. Many doctors are unsympathetic and suspicious and dismissive of us before we have been given a fair hearing..

    No doctor who reads this muck over breakfast and is influenced by it would see ME as a rewarding field to specialise in.
    That is the purpose.
     
  10. Jarod

    Jarod Senior Member

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    Pemberton and Thompson people are obviously posting very extreme views, and don't reflect the behavior of real journalists who try and provide balanced/informative news articles.

    They're essentially responding to casual conversation to patients in a forum, and distorting things so far out of context it's not believable.

    They just publicly blew their cover, embarrassed themselves, and insulted thousands of people.

    I'd say the situation has just resolved itself with Thompson's "over the top" article.
     
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  11. alex3619

    alex3619 Senior Member

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    ME is not a financially rewarding field for most doctors. We take too much time, we are too difficult to diagnose and treat, and we create problems because responsible doctors will want to do a lot of tests, and the system frowns upon that unless the patient is paying cash. Insurers hate tests - tests here are very limited, and in the UK for ME they are next to non-existant. If you want tests you have to get them privately without insurance.

    Having said that we now have more researchers than ever before, despite all the roadblocks. Its the academic and institutional roadblocks that seem to be the real ones, not patient advocacy.

    On Angela's comments, one was very telling. We are banned from donating blood and organs in the UK for life. Its for our health. Even dead people cannot donate organs - its bad for the health. What? :aghhh: If this is wrong could somebody comment? If its right, how is it that we have accepted this state of affairs?

    Bye, Alex
     
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  12. biophile

    biophile Places I'd rather be.

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    I cannot confirm the motives suggested in currer's explanation, but I have to agree that unbiased biomedical interest in ME/CFS is threatening to psychiatric researchers (and possibly also to insurance companies), and that the negative portrayal of their critics has been effective in dismissing criticism.

    One of many absurd claims in the blog is that "chronic fatigue" was once regarded as an exciting field of research by doctors but is no longer. Really, since when? Just do a search for "chronic fatigue" at PubMed and you will see in a graph that the number of papers published has been steadily increasing for decades. What is really being said is Wessely once regarded chronic fatigue as an exciting field of research but no longer.
     
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  13. currer

    currer Senior Member

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    The give-away is in that statement, biophile.

    "ME used to be regarded as an exciting field to research, but no longer" - they wish!

    What a remark to make at a time when research interest has been rekindled by Lipkin's own initiatives plus many others in the US.!

    Could be desperation, and fear, and a last ditch attempt to hold things back.

    What a load of tripe this article is. But is it not for us, but for medics.
    These are the people they want to influence. Patients have no power in this debate.
     
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  14. alex3619

    alex3619 Senior Member

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    They lost diabetes, lupus, arthritis, MS and peptic ulcers, plus a whole lot of others. If they lose CFS then fibro, MCS, GWS and IBS are not far behind. After that who is left for them to treat? Psychosomatic medicine will be close to dead. Their funding will dry up. Their legacy will be failed psychiatry. Bye, Alex
     
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  15. user9876

    user9876 Senior Member

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    Thats why they are increasing the scope of mental illness in DSMV. Alternatively they could treat each other for post traumatic stress disorder when they realise what they have done.
     
  16. Stukindawski

    Stukindawski

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    The idea that a particular advocate is 'mad' or not kind of bothers me. It's very Pemberton-like. After all who hasn't had an opinion or belief from time to time which later they felt a little ridiculous about?

    A reasonable argument is a reasonable argument.

    I find that kind of divisive behaviour troubling. If it doesn't feel so good to be conflated with militancy, why would you conflate at state of madness with those whom you disagree?

    It's like when people say they are on the side of Science. The moment Science is personified in that way, I become suspicious and disinterested.

    I re-iterate the point I've made before, I think this kinda article can be too much of a distraction. It's better to connect with new voices who don't yet have an agenda than worry about the Pemberton's of this world. Even if he realised he is wrong, would he have the stones to back down in public? Personally I think there's enough fuel for his cognitive dissonance to keep him going for a while yet. Information on ME/CFS is polluted to that extent.

    Keep moving forward. These articles always happen when there's ME/CFS news, standard protocol. I'm sure they hurt all of us a lot, perhaps the best thing to do is find a way to feel less troubled by them and redouble hope and energy into positive pursuits. Though good comments are always great, Biophile's for instance. Last year, there was no Sonia Poulton, so that's a big change in itself. It's also a sign that there will be those willing to listen.

    Pretty cool really.
     
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  17. currer

    currer Senior Member

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    Seriously, I believe these noisy press campaigns denigrating sufferers are aimed not at patients, but at blocking and diverting researchers from putting forward new research proposals on ME to the MRC.

    They always occur whenever there is fresh interest and new findings in ME.
    The last time we were accused of "death threats" was at the height of interest in XMRV.

    Now I believe it is Lipkin's new initiatives which have led to this fresh press campaign to convince medics (not patients) that we are too unstable and dangerous a patient group for anyone to risk their career for by applying for a research grant and taking an interest in this field.

    These unfounded and disgraceful allegations can only be made anonymously in the press.

    It would contravene medical standards for a doctor to put his name to such abusive stuff.
     
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  18. Esther12

    Esther12 Senior Member

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    I was busy today, and just came back... this thread has grown quickly... but nowhere near the rate of those Telegraph comments. I think that the comments from those who seem to be patients seem fine, and better than the comments from others. I am not an unbiased observer though, and I'm pretty confident that no-one will have changed the minds about anything.

    After posting earlier today I did think I should mention: I've always been quite keen on adversarial debate. I've always been willing to slightly push up against social norms in the way that I speak, and my willingness to attack the ideas of those I disagree with. I tended to do it in a way which was respectful to the individuals involved, so generally people didn't mind, but all this did make me realise that I may not be very good at recognising when it is that other CFS patients (or I myself) go too far. My standards for this may be somewhat abnormal.

    By that point, I was pretty confused about which bits wee sarcastic and which were not... I started thinking I understood, but not being sure, and got more confused from there.

    Oh yeah - I forgot that having patients write with their concern to a journal was being represented as something dark and sinister. In a more recent paper, the letters about PACE which were published (almost all of which made sensible and worthwhile points, and none of which had anything seriously wrong with them) were the only evidence cited of 'personal and unscientific attacks'. This sort of spin makes it really difficult for me to take the professed fear of 'militants' seriously.

    My eyes are drooping, so I'm stopping now. Best wishes all.
     
  19. Bob

    Bob

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    Don't worry, Firestormm, it's a busy thread. I knew that you hadn't got around to reviewing the latest posts.

    Don't worry about responding if you not feeling up to it, Firestormm. I'm just expressing my opinions, and they don't require a response unless you are up to it. I know that not everyone is going to agree with my opinions about it all, but it's been a very interesting discussion.

    Edit: I'm just catching up with all the posts myself. I see we crossed posts a bit.
     
  20. Bob

    Bob

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