And yes we are being slaughtered. When you prevent treatments and diagonostics for decades and put the psychiatrists in charge, your actions have spoken louder than words.
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.
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.
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.
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”.
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.
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.
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.
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 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 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.
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.