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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Cross Party Group on ME

Discussion in 'General ME/CFS News' started by Yogi, Oct 9, 2012.

  1. alex3619

    alex3619 Senior Member

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    I agree with this, Esther. However, Jarod has a point too. The aim of the system is to manage the problem, but the effect is still that people are being abused, disempowered and dying. This is also much broader than ME or CFS, and also its a right wing trend in politics.
    Jarod, Valentijn and PhoenixDown like this.
  2. pollycbr125

    pollycbr125 Senior Member

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    I havent read all the thread its far too much for me to wade through . I have to say my experience of getting diagnosed with me/cfs has not been a positive one .

    ive had abnormalities since becoming ill . I went around the NHS merry go round for 3 years untill I was finally carted off to one of the ME clinics . They wern't going to accept me due to the abnormalities but hey presto I got one set of 'normal' bloods and I got diagnosed . Ive had nothing but abnormalities since . I was blamed when the CBT didnt work was told they didnt think I had 'tried ' hard enough , needless to say we parted company . I really could not relate to anything the clinic was saying and I lost track how many bloody times they asked me if I was anxious they didnt seem to get that no actually I wasn't .

    So here I am with nuerological abnormalities and immune abnormalities several years down the line with no treatment apart from painkillers and antiinflamtories from my GP . Im in a catch 22 he doesn't know where to send me ,I don't know where to ask to be refferred , I don't want to get reffered back to a consultant to be patronised and ridiculed again just because they havent got the ability to add up all these abnormalities and reach a diagnosis yet the ME/CFS diagnosis is like a bleeding noose around my neck . I think I will have to go private to even be taken seriously its got to the point that I don't even want to go to my GP anymore whats the point . I think I have possibly got some kind of connective tissue disorder but that maybe I dont quite fit the usual suspects hence ive ended up with the ME/CFS label instead .

    I developed hashimotos last year , years after the diagnosis for ME/cfs I thought great maybe that was the problem all along but nope no such luck im taking a big dose of levothyroxine every day and its made no difference whatsoever . However that is an autoimmune condition so ther is a chance I have another one too . My problem is nobody in my family has autoimmune conditions so by some scewed logic they dont think I can possibly have im sorry but they have to start somewhere .

    My personal feelings are that anyone with abnormalities should be diagnosed with ME and those whos only symptom is fatigue diagnosed with CFS . The sickest are totally being ignored it seems those with abnormalities are too much of an headache for anyone to even try and figure out whats wrong . The clinics do not cater for such people at all for anyone with abnormalities there really is not much point attending one thats if your well enough to even get there I couldnt get to my local one now which is about 15 miles away ..

    So I think ME and CFS should be seperated its the only way the sickest will ever get studied for research and the only way they are ever likely to get adeqaute treatment .
    currer likes this.
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Then I don’t understand your point because I consciously made my comment conditional by use of “if then”. And no one in this thread has advanced any notion of advocacy that involves recognition of structural problems or of the need for acknowledgement of difficulties faced by other patient groups or the potential for coalition. Quite the opposite – this thread follows from an abject failure of advocacy that involved a division of what politicians were content to deal with as a cohesive patient group.

    That’s a reasoned and well articulated basis of what might be a sustainable element of advocacy. It does demand though acceptance of a particular perspective and therefore will speak to only a limited audience, and it suffers from what I would argue is a fatal flaw, that it is, it necessitates the identification of an ‘opposition’ whose ‘claims’ have to be ‘countered’ and one is then axiomatically defining M.E/CFS by what it is not, rather than what it is (or what it might be, as we can’t say definitively what it is). I question the wisdom and even the necessity of acknowledging an ‘opposition’ in M.E/CFS advocacy – the more often you say ‘it’s not psychiatric, it’s not psychiatric, it’s not psychiatric”, the more the audience gets to thinking “well maybe, they’re making more it than sense deserves”.

    Clearly our understanding of pragmatism is profoundly different and apparently beyond establishment of common meaning. Engagement with an audience (whatever audience) demands certain things – use of the audience’s preferred language, use of cultural terminology that is familiar and acceptable to the audience, acknowledgement of the audience’s guiding social mores and operative social structures. This conditionality applies whether you are talking to someone on a park bench or addressing parliament. Certainly the potential to positively engage with Chalder or Sharp or Wessely at this stage is very, very limited, and personally I can’t see any need to do so. But there is a huge need to engage at the political and administrative level with people who will consider Chalder , Sharp and Wessely to be authorities whose work and position demands acknowledgement. To challenge the work and position of Chalder, Sharp and Wessely before the audiences that comprise people who can actually effect change, has to be done in the language of those audiences or else they will not listen. And if there is no chance of being heard on the matter, then it is a waste of potential good will and influence to even make the argument – better to leave the issue and deal with what is achievable.

    Absolute knowledge of the future may not be known, but politics, public relations, marketing and business and social psychology have produced very clear definition of what is and what is not achievable. But again I don’t know where “sucking up to quacks with authority”, comes in – the groups that are important for M.E/CFS advocacy are politicians, health administrators and researchers – those are the audiences that have to be addressed to effect change, and they will only become engaged if advocacy is addressed to them in their terms. That’s not sucking up, it’s basic human psychology.

    I was arguing as soon a PACE was published that arguments about the details of the study were missing the point and the only issue that needed to be campaigned upon was that, as the study stood on its own terms – it demonstrated that the treatments were wholly without cost effective benefit. I certainly do not consider what you propose to be a politically extreme position because it runs to a core political issue – cost effectiveness. Unfortunately the momentum that could have been achieved on the publication of PACE is now unachievable, and the issue will have to be fought out (sadly) through the new Commissioning Groups in England, and through the separate structures in Scotland, Wales and NI. As far as Wales is concerned, the funding base (lowest in the UK) is such that the arguments are on principle only with the absurd reality that delivery of any consistent service directed toward M.E/CFS is never going to happen. When core services are under threat in some of the most health challenged communities in the UK, it’s difficult to get an argument about treatment (that can’t be delivered) philosophy, taken seriously. On the west side of the Severn at least, I’d say it’s time to move on to something more rewarding.
    IVI
  4. Bob

    Bob

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    Hi Polly, it doesn't sound much fun for you.
    I've had hashimotos (fluctuating) as well.
    My ill-informed doctor doesn't associate it with the ME, but there is supposed to be an increased rate of thyroid disorders in ME patients.
    You make a good point about the clinics not catering for ME/CFS patients who have anything other than straight-forward fatigue.
    So, in some ways it could be said that the current system is such that biomedical ME/CFS patients are excluded from the system.
    I think I would say that all CFS/ME patients are currently excluded from the system though, because we are all treated inappropriately and inadequately.
    The PACE & FINE Trials demonstrated that CBT/GET were ineffective and inappropriate for all CFS/ME patients.
    And the PACE Trial only recruited 'fatigued' patients (using the most inclusive Oxford CFS diagnostic criteria which only required 'fatigue'), and the treatments were still ineffective.
    currer, Valentijn and alex3619 like this.
  5. alex3619

    alex3619 Senior Member

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    [My bolding]

    Hi IVI, I disagree with your implications. I am aiming at a multi-issue coalition via a specific mechanism, though it is fair to say I have not expounded that in this thread. Achieving it might well be too Herculean a task, but that does not mean it cannot be done, and it definitely doesn't mean it shouldn't be considered. That will be three blogs from now, but its looking like that will be next year as real life is draining too much of my energy.

    Secondly, my book is also aimed at structural problems in government and bureaucracy, and how these impact the medical system. It arises, in part, out of failure to treat medical systems as political, and an insistence its just an economic activity or a scientific activity. My analysis is very undeveloped as yet, but its becoming clear that there are major structural problems in the medical systems of society. I will have more to say about this in time. I am being inexorably drawn into political theory as many of the problems are political, and the system is not set up to be run as an effective political system. My second planned blog before the end of the year (I hope) is on the principle of the separation of powers and related issues. Politics matters.

    Failing to challenge something like PACE is also a very very very bad idea. It does not matter if we get the government and bureaucracy to agree with us and change policy. The argument you put forward is a zero sum argument. There are shades of success between victory and defeat. If there is no opposition to an idea the political message is the populace is in agreement. Full steam ahead. This is perhaps less about making the system change direction, than about making sure they do not accelerate off in the wrong direction. Advocacy is a brake at the moment, halting the momentum of the biopsychosocial movement in ME and CFS: its not the steering wheel, or at least not yet.

    I am not the only one saying these things either, so advocacy is in part aware of the issues.

    Just to give a flavour of one thing I am focussing on at the moment, I think we need to be considering the impact of the fifth estate, the internet. The people have a new voice, but its unstructured and chaotic.

    The division of ME/CFS into ME and CFS is not just political. Political choices have ramifications to research and research funding. Advancement of our scientific understanding in low budget studies (but not if there is adequate funding and good study design) requires that ME be considered separately from CFS. Thats not perfect, but it would be a step in the right direction. We need biomarkers, but biomarker research is not adequately funded. Part of the political process that limits funding is the push to treat this collection of disorders as a single homogeneous entity. That decision, the promotion of the broad inclusive Oxford definition, must be opposed everywhere and everywhen.

    Furthermore I think its time we took the gloves off. We have been playing too nicely. We should not be trying to play non-partisan politics. Everyone who pushes for babble needs to be opposed, though I think we need several different strategies running side by side. I might get around to that in three blogs from now - my ideas are already on PR, but they need development.

    Bye, Alex
    Bob and Valentijn like this.
  6. Esther12

    Esther12 Senior Member

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    It's entirely possible that even if CFS were approached in a reasonable manner, we still would not have effective treatments of diagnostic tests. The poor quality of much of the work which surrounds CFS will not have been helpful, but we don't know what impact it has had in preventing more meaningful work to take place.

    Hi IVI - I tried to be more concise this time, but didn't do that good a job.

    Often there will be threads on a CFS forum where no one mentions the problems that occur in the treatment of other conditions - that's not any sort of denial of these problems.

    re 'If then' - it seems that you are saying it was just an intentional straw-man then? In the context of this thread, where you were presenting criticisms of people's actual views, adding in this hypothetical reason for treating the complaints of CFS patients dismissively does seem a bit strange, particularly given your talk of the need to communicate using one's audience's preferred language, cultural norms, etc. It does reflect some other rather unpleasant attempts to misrepresent the concerns of CFS patients, and entangling that view with your own does seem rather pointless.

    Given the power and influence of the 'opposition' I don't see how any discussion about how CFS should be treated can avoid acknowledging them. I think that touches upon similar areas to the next point. re: A limited audience: That's true, but given the nature of, and uncertainty which surrounds CFS, I don't think we can do better.

    re 'It's not psychiatric, it's not psychiatric': I've never said this. It does seem quacky to me to lump together patients under a 'CFS' diagnosis, and then treat them as if they need psychiatric care, but the label is not that important to me. Or at least, it's only important in so much as it seems quite widely accepted that when patients are given a 'psychiatric' label, it becomes acceptable to mislead them, to manage their cognitions on pragmatic terms, to spin data and research about their condition, and so on. If CFS was treated as 'psychiatric', but it was recognised that all patients should be spoken to as honestly and clearly as possible, and that manipulative or misleading claims from clinicians and researchers should result in disciplinary action, I'd have far less concern about the label. It's quackery that I have a problem with, and sadly it seems that a psychiatric label is often used to justify quackery.

    Engagement with an audience has little to do with pragmatism imo. Bertrand Russell's criticisms of pragmatism were communicated very clearly and effectively! Also, I think that it's best to accept that some people are not going to like what you are going to say and being a bit provocative, in the hope of changing some people's minds, rather than just restricting yourself to claims which are going to be easily accepted by your audience. I have no problem with trying to use language in the most effective way possible, but pragmatic approaches are often used to justify changes in one's position or core arguments in order to appeal to those with power - I think that we have some really strong core arguments, which will be unpopular, but can be defended in a convincing enough manner that they may be able to change minds.

    I think Action for ME does suck up to quacks. As does the Sussex and Kent ME Society. Sometimes it seems that the MEA does when it seems to suits a short term goal. With CFS, a lot of those with power are quacks who are happy to mislead patients, and I do not think that they should be respected.

    I really disagree with this.

    It's the specifics which matter.

    There is a paper from Chalder et al. using data from PACE to assess the cost effectiveness of CBT and GET... surprisingly, they conclude that these treatments are cost effective. When it's these people who are writing up the summaries and conclusions which commissioners will be reading, I do not see how you can claim that the specifics do not matter.

    re not being an extreme position: I think it could easily be portrayed as such by Wessely, Chalder etc:

    "This endless desire to look back at past problems is really damaging. How can we help patients when some are still clinging on to a culture of blame? Our research has shown how vital it is that patients trust their doctors, if we now focus attention upon these allegations of 'misleading claims' it could lead to increases in disability which will cost the government and society a lot of money, and more importantly, will cause our patients a lot of needless suffering. I think that everyone here acknowledges that we all want to help CFS patients get better, and the evidence now clearly shows that our treatments are able to do that, why can't we just come together and focus on that?"

    I could be completely wrong about this, but I think that you downplay the political power and influence of a lot of these people. Chalder in the chair of BABCP, White in influential with the DWP, the BPS approach is central to government reforms to disability benefits and heavily influenced by Wessely and Aylward. That's ignoring outside interests like insurance companies. I don't see how we can just go over the heads of these people.
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  7. alex3619

    alex3619 Senior Member

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    Hi Esther12, I substantially agree with you. I think we need to come to grips with the complexity of the politics in the UK, especially medical politics. From that understanding we can develop strategies. Thats what we lack to a large extent: analysis and strategy. Simple explanations do not adequately deal with the myriad issues and problems. I wish it were simple. Its not. The undue influence and institutionalized bias need to be exposed. This is not conspiracy. Its a confluence of many issues arising out of the early 1980s and still gathering momentum. I now find myself wondering if the ME debacle can be resolved until society becomes aware of the general trend of modern politics, particularly UK politics.

    Advocacy is only a brake on psychobabble, we do not have much influence on direction, but if we take the foot off the brake we could be in big trouble. I think a real solution will come with research into biomarkers and treatments, but if BPS imperatives are not opposed it will take longer to get there.

    Has anyone considered the timing of the large LP study proposed in Norway? It has disturbing implications.

    Which specific Bertrand Russell discussion on pragmatism are you refering to Esther? I have read some Bertrand Russell, I own one of his books, but he was very prolific.

    Bye, Alex
    Bob likes this.
  8. Bob

    Bob

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    For a number of recent years, the MRC gave zero, and almost zero, funding to biomedical research for ME/CFS.
    At the same time, multiple millions went to the PACE and FINE trials, to prove what we already knew.
    I think it is probably only through political pressure (i.e. patient advocacy) that the MRC has finally acknowledged that there is a problem, and has started to change things.

    Biomedical research has been blocked by psychiatrists on the MRC grant review panels in the past, and rumour has it that another biomedical study got blocked again recently by psychiatrists on the MRC review panels, so, if this is the case, then there's still a problem. But the MRC has at least now started to fund serious biomedical research, and has invited further applications for more biomedical research.

    Psychiatrists, and many in the medical profession, use the term 'CFS', and consider it a psychological issue, but many patients prefer to use the term 'ME', and consider it a biomedical issue.
    'ME' has always been used in relation to a biomedical illness, whereas 'CFS' is the term that psychiatrists use in relation to maladaptive cognition and behaviour, and false illness-beliefs etc.
    This polarised division is partly why the 'ME' vs 'CFS' debate has become such an issue.
    Superficially, it seems to be just a fight about a name, but fundamentally, it's about changing the medical and political paradigm, such that CFS/ME is treated as a serious biomedical illness.
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  9. Bob

    Bob

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    Yes, I agree with you Alex.
    But I can't see any way of developing new effective strategies, unless we have a heavy-hitting patient organisation with enormous funds for advocacy, and the will to aggressively challenge the government on the fundamental issues.
    And I can't think of any way of making that happen.
  10. Esther12

    Esther12 Senior Member

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    Hi Alex.

    It does all seem rather complicated. I'm still deeply unsure as to how it would be best to proceed. I agree that there are wider social and political problems which happen to be particularly problematic for those with a diagnosis like CFS, but I'm not sure what we can do to improve things, or how likely change is when the current path seems so favourable to those with power, money and authority.

    re Russell: I read a collection of his articles from the library before I was doing much CFS reading, and thought almost all of his work was well written - it was one of the things I enjoyed most about his work (the mathematical sections were still pretty impenetrable, but apparently he was wrong about lots of that stuff, so it doesn't matter. Phew!). I don't have a particular piece on pragmatism to recommend, but he did write a few of them. Having gone back to re-read some, they often do seem to touch upon problems with the BPS approach to CFS. A quick google revealed some pages you might be interested in, but I'm not suitably well read to guide you to anything in particular. (I should do some more reading in this area myself actually - some of those web pages I found did look interesting!).
  11. alex3619

    alex3619 Senior Member

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    I am slowly working on strategies. As my analysis proceeds I may come up with more. Two of my proposals arose out of my early analysis, so that things I advocate may change over time. The first is an internet based neuroimmune (or broader) media centre. This would not be just about ME. I want to create a one stop shop that would vie with the Science Media Centre on these specific issues and would be promoted to health and science journalists. I am also considering linking it to wider disability issues.

    Please note this cannot succeed if its just my initiative. It will need to be developed and created by a coalition of advocacy groups.

    The second is about memes. I think we need to make it very very plain that psychobabble is ludicrous and scientific nonsense, not just wrong. We need to promote is as public waste, and political idiocy. To do that we need one or two simple messages repeated over and over millions of times: so append to as many posts, blogs, websites and videos as possible. Every year we then promote a new set of memes, based on current analysis.

    The two approaches cannot be combined however. They are separate strategies. A media centre will have to be very focussed on accuracy, not a political tool in the same sense as slogans or memes. It would be political, but it only has value if its accuracy and content are not suspect - though you can expect it to be attacked.

    The memes are political, and should cover the range from science to public policy. They are about shifting opinion, and altering search engines, and providing education, all at the same time.

    Both of these ideas and some others I am considering need further discussion, which I hope to initiate in the new year - but feel free (anyone) to start debating the issues now.

    We have been playing softly softly by their rules. We need to break the advocacy paradigm. I am not advocating breaking laws, that would be more damaging than useful, I am advocating we no longer play by their rules. We must anticipate making mistakes. Mistakes are OK. What is important is that we learn, create new strategies, and advocate them.

    We cannot go the road of HIV AIDS, we don't have the advocate numbers, the health, or the general support. We need to think outside the box, not allow the babblers to define the walls around us.

    Bye, Alex
  12. Quilp

    Quilp Senior Member

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    Hello IVI My bolding

    The wisdom and necessity of acknowledging an opposition is an inevitable consequence of advocacy. In exacting a narrative that's needed to afford change, I quite agree you need the right audience. You also need the right script; and a script that eclipses the main protagonist is difficult to countenance.

    If I keep saying it's psychiatric, it's psychiatric, it's psychiatric, why would the audience be more likely to think I was making too much of this ? Your inference points towards a tactical mistake, but can you articulate why ?
    Not only have we lost the main protagonist, we are precipitiously close to losing the defining chapter.

    I don't think we are ready to go to print. And even if you decided we were, I don't think many of us would want to find a publisher.

    Kind regards, Mark
  13. barbc56

    barbc56 Senior Member

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    Isn't there a quote from someone who worked with HIV that stated we do need to work with the opposing side? Did I dream this?
  14. Esther12

    Esther12 Senior Member

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    alex3619 :

    I was just reading this piece from 1994 of Russell and pragmatism. It's a bit interesting in relation to CFS because it gives a sense of the 90s rise of pragmatism. With Blair, New Labour and Clinton (Clinton was an NLP fan!) the pragmatic BPS approach fitted in to intellectual trends, and work like Shorter's fed in to the exciting 'power of beliefs' motif that seemed to be around at the time. I think that other parts of our culture reflected it too eg: Derren Brown's stage persona was able to take advantage of that sort of thing: a sciencey-psychological mysticism; in Terry Pratchett's Discworld the power of gods emerged from the beliefs of their followers; Alan Moore's pragmatic faith in mysticism informs all manner of his works; etc.

    edit: I was just looking at a music website which linked to this video on Alan Moore:


    Probably the result of strange resonances in idea space rather than a coincidence.

    In some ways, I think that the Iraq war has turned people away from such explicit pragmatism - the neo-conservative nonsense about creating new realities, and Blair's pragmatic approach to the evidence around WMDs have served to illustrate the problems which pragmatism can lead to.

    I'm not sure about any of this - maybe I'm just constructing a narrative which I find pragmatically appealing!

    This might be interesting for you after reading some of Russell's pieces.

    http://digitalcommons.mcmaster.ca/cgi/viewcontent.cgi?article=1272&context=russelljournal
  15. Firestormm

    Firestormm Guest

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    Holmsey, have tried sending you a 'conversation' but, streetfighter, you ain't accepting the darn things (which I can understand totally). So if you're still following this thread - would you be so kind as to initiate a 'conversation' with moi?

    Danke.
  16. In Vitro Infidelium

    In Vitro Infidelium Guest

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    But it’s key to what has been argued in this thread. If the proposition is that what requires challenge are structural issues in health care delivery (NHS or other) that renders all the solipsistic references to how things are bad for M.E/CFS patients as marginal because those references are to symptoms of underlying problems, the challenge of which necessitates general references. I haven’t seen those arguments made in this thread, nor for that matter have I seen them articulated (at least in any reasoned sense), elsewhere on PR.

    I was allowing that my apprehension of what had been written was not accurate. At no point have I suggested that the “complaints of CFS patients [should be dealt with] dismissively”. The point I made was that if one insists on occupying a pedestalled position (remembering where this thread started), and from there presents oneself as notably oppressed, then sympathy is unlikely to be afforded. If that is not where ME/CFS advocacy is at, then fine, but it is very difficult not to see it as such given where this thread started.

    I guess there it’s a matter of perspective. I wouldn’t make ‘treatment’ the focus of advocacy , given that there are numerous other lines of available presentational focus. To the extent that it is necessary to challenge inappropriate treatment delivery, a far surer approach would be to focus on patient empowerment and to establish patients as enabled arbiters of what interventions are helpful to them in terms of illness and symptom management. It is not necessary to challenge the validity of the whole of psychiatry or demonstrate some claimed conspiracy, merely the establishment of patient validation.

    I wasn’t suggesting you had advanced the “'It's not psychiatric, it's not psychiatric ………' position – but that position is characteristic of much online discussion from patients and it is frequently advanced as a necessary element of M.E/CFS advocacy. I consider that to be a serious misjudgement. If (as most readers here would likely agree) the illness we wish to advocate for is not primarily a psychiatric illness – then don’t start from position that someone has said it is. Demonstrating that M.E/CFS is not a psychiatric illness is impossible, because while in some circumstances it is possible to prove a negative, that will likely never be that case in an illness with so many unknowns and so many potential variables. Trying to develop a ‘class complaint’ against a whole body of professional practice in such a circumstance is a fools errand – one can never win that particular battle and all associated battles – research funding, patient empowerment etc, will be tainted by the ongoing failure.

    I have never intended my use of the word ‘pragmatism’ to equate with Pragmatism. Whether Bertie also objected to ‘pragmatism’, I’ve no idea but he was certainly happy to profit from the pragmatism of those who sold his books and boosted his image. You can only change the mind of someone who is prepared to listen to you – if your argument is no present in terms that engage someone, they are not going to listen. In the end it’s not about ‘good arguments’ it’s about ‘attractive arguments’.

    Yes I thought Chalder’s paper was brilliant piece of opportunism. And likely to become standard in the new NHS contracting structure where patient volume and (importantly) centre of excellence contract advice ( local services justified on the basis of purchased expert advice – Consultants acting as ‘consultants’ on the service structure) underpin service viability. Had a campaign focussing on the lack of CBT and GET benefit followed directly from the publication of PACE, Chalder et al would have had no time to present a cost/benefit defence of their work, 20 months on and the field is theirs. As to the notion of a powerful pro BPS cabal – even if such a thing exists, pursuing advocacy as though it did, would only confirm the validity of a ‘strong opposition’ to the patient perspective. My advice is (for the purposes of advocacy) treat them like Tinkerbell – disbelieve and they die. And if some believer resurrects them, then point out your perspective that that they are product of myth and require evidence of their relevance to the advocacy that is being advanced.
  17. Esther12

    Esther12 Senior Member

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    I expect that all posters have slightly different views on this. I have discussed problems with aspects of the CFS with others here, but I expect that there has not been much focus upon advocacy to improve the NHS generally, as this is a CFS forum. When the only thing people have in common is that they've been diagnosed with CFS, it's not surprising that discussions about improvements that should be made focus upon the problems faced by those with CFS. I don't see this as a surprising thing. There are unusual things about CFS which do leave patients with this diagnosis at greater risk of mistreatment than is the case with many other diagnoses, and there are also problems with prejudices and quackery which are less common with most other diagnoses. The problems this leads to are, to some extent, the result of more general problems with the nature of the NHS and medical regulation in this country... I could go on typing forever actually. Some posters here may have simplistic and inaccurate views, as is the case anywhere, but this is a complicated topic, and that people don't fully address that in all their posts shouldn't be taken to mean that they believe it it is not.

    Right - but your willingness to jump in with your own assumptions, many of which are not terribly flattering, rather than first asking people to clarify their own beliefs is a bit insulting. It doesn't really fit with your own claims about the need to communicate in a shrewd and cautious manner either (another problem with pragmatism is that it often leads one to treating those who have power with more respect than those who do not, which is a bit dodgy imo).

    Sorry, I may have confused things. I meant 'how CFS should be treated' as in 'how children should be treated' rather that 'what medical treatment is appropriate for CFS'.

    I'd say that the simplistic position you've characterised there is very much a minority response amongst the CFS patients I've spoken to (you do seem a bit too willing to play along with what I think are unfair assumptions about, and mischaracterisations of, CFS patients).

    What does it require for a condition to be viewed as psychiatric? What does it require for a condition to no longer be viewed as psychiatric? It seems that no-one really knows. Given the complicated nature of these issues, some patients will struggle to communicate their beliefs about them in a clear and effective manner (I know that I still do), but I think that the best response to this is to try to engage in a discussion intended to understand exactly whet they do think and why, hopefully clarifying both parties beliefs in the process.

    If it were not for the fact that a 'psychiatric' label so commonly leads to patients being treated less well, I would have little interest in it's use. As it is, I think that it is best to focus upon improving the way that patients are treated, and acknowledging the problems which have occurred, rather than getting into semantic discussions about the nature of psychiatric diagnoses. When so many of the psychiatric researchers associated with CFS have produced such poor and misleading work, and done so much to harm how patients are treated, there is a broad desire to escape their influence.... I'm rambling again. Basically: I think that the 'It's not psychiatric... it's not psychiatric' approach to advocacy is another straw-man.

    Slightly OT: I've just been reading about the process by which homosexuality stopped being viewed as a psychiatric condition. Of course, the primary reasons were cultural and moral - social elites stopped believing (at least so consistently) that homosexuals deserved to be treated with disdain, but the research which was used to allow the ASA to pretend it was the result of scientific progress simply served to show that psychometric testing (Rorschach etc) could not be used to consistently distinguish between straight and homosexual people, even though there were some variations between the groups. By this standard, CFS has repeatedly been shown not to be a psychiatric condition!

    The trouble is that I think that the most attractive argument to most people is the BPS approach to CFS. It's just not a good argument. I cannot think of a narrative to promote around CFS which will be more appealing to people in positions of power than the biopsychosocial one. Also, personally I prefer dialectic approaches intended to find the best argument, rather than playing with rhetoric in order to manipulate people into finding one's arguments attractive. I still have some (perhaps misguided faith) that a lot of other people are also interested in finding the best argument, some of whom may happen to have some power and influence. Unless we find people who are interested in trying to find out what's most likely to be true, I do not think we will be able to make much progress.


    That is Pragmatic!

    I wish that there had been more of a campaign post-PACE, but I also think that one of the problems was that much of the response did not do enough to focus upon specifics. A lot of the raw data which we wanted was not being made available, but many of the specifics which were there were in our favour.

    I do not have much personal experience with the politics around CFS, but I feel pretty sceptical about the approach that you are suggesting. I'm not entirely clear what you think we should be aiming for, or from who, but I feel like our strongest points are in opposition to the way things like PACE have been spun. Ignoring the problems around much of the work which informs how CFS is treated, or trying to avoid detailed discussions about the nature of this work, seems a bit like taking Obama's approach to the first presidential debate.
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  18. Bob

    Bob

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    Regarding PACE. It took everyone more than a year to fully unpick the study, because it was so carefully stitched up.
    So it was impossible to respond to it in full straight away.
    (If the Lancet & the MRC had done their job properly, then it wouldn't be left up to patients to demonstrate the basic weaknesses and flaws in the PACE Trial.)

    I think that most people are only just beginning to realise that only an average of 13% of participants, at best, were said to have 'responded' to treatment with CBT/GET, using the paper's own (post-hoc) primary measures, but that these measures were inadequate, biased, post-hoc and misleading.

    Re cost effectiveness, it was impossible to use that as an argument against PACE without any specific figures.
    They've now managed to produce a paper saying that CBT/GET are cost-effective for the NHS.

    I think the best approach for PACE is to continue to point out the lack of effectiveness of CBT/GET, that was clearly demonstrated in the study, and in the cost-effectiveness paper.

    CBT/GET did not lead to clinically useful outcomes in the proposed protocol measures, or in the objective measures used. And the post-hoc primary outcome measures were weak and unhelpful.

    There were 'no substantial' differences in relation to welfare benefits, private insurance or lost working hours, as per the cost-effectiveness paper.
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  19. Quilp

    Quilp Senior Member

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    Hello IVI ( sorry my bolding )

    I would say that the Wessely school has been quite impressive in trying to prove the impossible. For at least twenty five years the ''audience'' has listened and acquiesced.

    I am not sure that there is a class complaint against psychiatrists in general, but the Wessely School in particular.

    I don't think anyone is trying to ''prove the impossible''. We are trying to prove the probable, of which there is overwelming evidence.

    Kind regards, Mark
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  20. Esther12

    Esther12 Senior Member

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    Yeah, absolutely. Although, I think that a thorough analysis could have been done far more rapidly by healthy people with prior experience of all these tools (having said that, I think that our lack of experience required us to go back and carefully check citations in a way that many others would not have).
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