I think you sometimes become the 'Wessely' of the patient community by accident from what I have read.
I have actually seen you commend some advocacy, so I know it's not actually all doom and gloom.
I think I may now be ‘doomed’ to carry that epithet for evermore.
Criticism is obviously the large feature of your posting and it seems to engender a little...disapproval I don't think that means you necessarily have to provide answers, but it might be positive to let others know that you're trying to inspire better answers via your criticisms.
Others have previously pointed out that I ‘don’t practice what I preach’, in that what I commend as effective advocacy is counter to how I engage on the forums. I’ve always been very determined that I would only participate on the forums on the basis that I was an individual arguing from a particular perspective, I’m not trying (and don’t want to try) to persuade anyone of anything, other than by expressing a personal view, supported as relevant by some external references. In the case of advocacy the available references are ubiquitous and if people want to understand the details of marketing, promotion, PR, philanthropic advocacy etc, then the number of sources are legion. And while I’d be very pleased if my contributions here “inspired better answers”, I can’t honestly say that’s my ambition; I’m just some bloke with something to write about on the internet.
Whether I (or anyone else) should be attempting to be something more/other than “just some bloke (or blokess) with something to write about” when posting about M.E/CFS, is an interesting question. In the couple of years that I have been posting, a lot of what I’ve written has been greeted in terms that effectively said that I can’t possibly be someone with M.E/CFS because someone with M.E/CFS wouldn’t ‘write/think like that’. Against that background I‘ve just been content to present a view that might strike a chord with readers of the forums (perhaps a very small minority) who themselves ‘don’t think like that’.
I did write (a year ago) what I considered to be a positive contribution to a discussion of M.E/CFS advocacy in a blog post:
http://forums.phoenixrising.me/inde...elations-not-a-mythical-rebirth-part-one.893/ which was matched by something rather more deconstructive -
http://forums.phoenixrising.me/inde...elations-not-a-mythical-rebirth-part-two.898/
@ IVI, Mortality in ME/CFS has become quite the popular advocacy tool of late. That and the most severe patients on tubes, stuff like that. Do you have any thoughts on this kind of advocacy?
This is something that I have written about previously, and which established distinct limitations on what level of robustness the issue can be addressed. In deference to the hardworking moderators I don’t want to resurrect past problems so I’ll proceed very cautiously.
IMO the issue of mortality is far too ambiguous to be a useful advocacy issue. The numbers of deaths that are even marginally attributable to M.E/CFS is very small relative to the accepted prevalence levels. Further even in individual cases where attribution of M.E/CFS as causative seems well established, ambiguity exists. I couldn’t understand why posts on another forum were so insistent about the importance a coroners decision where (complications of) M.E was adjudged causative. The way the judgement read seemed in no way to exclude M.E as being a psychiatric condition and hardly a useful subject to present in advocacy.
There is also a general point about mortality in that numbers and qualifications start to apply in invidious ways. Large numbers count – small numbers don’t – unless there is victim qualification – children (high score) mums – (high score) dads (medium to high) young people (variable – young handsome, beautiful, successful = high, average young = meh unless gory death) middle aged (meh – unless ‘grandma’ or gory) elderly (meh) frail elderly (meh – unless abused/neglected). The moment one has to start making these calculations, the whole validity of the approach is lost and I wouldn’t touch it with a barge pole, at least not until there was some cast iron research that says x numbers are dieing each year.
As to the ‘most seriously ill’. I think this another area of invidious judgements and ambiguity. What numbers are we talking about ? is the level of illness that demands tube feeding actually something that allows a realistic inclusion within the M.E/CFS diagnoses that produce global patient populations numbering in the millions ? One really doesn’t want to be promoting advocacy initiatives that invite questions about one’s own key positions – apart from anything else it begs questions about the advocate's own competence. At present the only really strong positions that M.E/CFS has is prevalence numbers and levels of lifetime disability – those facts demand political, media, and service level, attention; I’m loath to support anything that brings those facts into question.
There is also a reasonable concern regarding attenuation of message that results from parts of the patient population demanding to be considered as more empowered by dint of a disability differential – “I’m (or “my child/spouse etc is) more sick than you”, is in my view a really crappy position to take – saying (without any evidence) that x% are the most affected, raises the question of whether the remaining y% are actually ill. Basic rule of advocacy – don’t raise questions you can’t answer, unless the lack of answer furthers your cause.
