I believe the comparison they are making is that people who think the mind body approach helped them recover are 'shut out' of the debate on ME/CFS in the way that they (imo falsely considering the situation in this country and elsewhere) claim that the small proportion of people who transition...
So hypothetically speaking FcRI mediated illnesses might 'look the same' but, like with the different arthritises, have enough hetrogenity to account for the diversity in symptoms we see in pwME?
It really drives home how political (in the true sense) this has always been. Wessely and his colleagues captured the institutions that could have helped pwME and told a compelling story that reinforced existing predudices and told those in power what they wanted to hear.
If recent rumblings...
Many thanks for writing this Dave, and for quoting my response. Although you have committed the unforgivable sin of stating I'm from Sussex!
(I'm actually from Suffolk)
Thank you all for your kind words. I wrote it almost on autopilot but rereading it as published I had that sense of 'how could this have happened?' that I'm sure many of you can relate to.
@Peter Trewhitt I was worried about that too but didn't have the spoons to go trawling for references. I'm...
Its heartening to see it in print so quickly. I doubt it will make much of an impact but it feels important to have it there. Unfortunately I left my name etc on the end of the text when I copied it over so it appears twice at the end of the article!
I'm hoping the deranged tone is a sign they are losing the argument.
But I am so sick of the claim that telling people the truth is in fact causing disability. The BPS approach literally caused my disability in the sense that while I was technically disabled before (and absolutely support mild...
Final draft, I have added a penultimate paragraph @rvallee will perhaps appreciate
'Furthermore, the so-called biopsychosocial approach is always presented as a new and cutting-edge approach to treating people with ME/CFS when it has been the dominant treatment paradigm in this country and...
Hi all, popping back up to ask for feedback on my rapid response, I'm not sure I've struck the right tone but I thought maybe the sort of patient experience perspective will be valuble.
Yes, I had a similar experience with music, was just finding my way back to it when my health declined.
Hopefully if we have a finding breakthrough, and/or secure more funding from a proposal like this, some of those who chose another specialisation might be enticed back...
I will say as a small counterpoint that I am sure there will be good young researchers who are dissuaded by these arguments, as I was dissuaded from pursuing a career in music when I was young. Not that aspiring researchers (or musicians) should be shielded from the financial truth of things...
I'm certain I saw Chris Ponting say in an interview last year (I thought with Jennie Jaques or David Tuller but I've scanned the transcripts for both and can't find it) that he can't currently recommend that young researchers under his tutelage come into the field of ME research for precicely...
No it would certainly be a minority. But it's something that occurs to me sometimes when we see the callousness and dishonesty with which they take the deaths of ME patients and use them to further their arguments.
The chilling thing is that statistically, in terms of the numbers of people with ASPD (sociopathy/psychopathy) in high flying fields, there may well be a proportion of these researchers who know they are causing harm and do not give a toss.
I would be breaking the site rules if I said how this makes me feel.
Instead I'll just invite us all to imagine the state of Miller's reputation in a few years time if the science comes together as predicted...
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