I think the way PACE has been overplayed has two aspects to it. And these are entirely my own views. They underestimated what the media would do with PACE by a long way and they underestimated the role new media would play in blowing it out of proportion. I saw a TV interview of Mike Sharpe post- PACE and he concluded by saying something like, lets be clear these are only moderate results and..' and he went onto say something else that moderated the hard line the interviewer was taking. THat moderation was cut the next time I saw the same clip to make his views sound extreme. Editors want extremes because they make better stories. They dont care about the impact that has on the patients.
As the quotes Dolphin posted above show, it's pretty difficult to believe that they were genuinely so stupid that they did not realise how misleading the claims that they were making about PACE were. It's pretty difficult to believe that they were not being intentionally deceptive in their description of patients as being 'back to normal'.
Seeing as White, Wessely, Chalder et al. have done work on the media's representation of CFS, etc, etc, and claim to have a degree of psychosocial expertise, they need to be viewed as remarkably incompetent if we are to go on assuming good faith.
And then the spin in the journals which I know is your big grumble. This is endemic in science not just CFS science. As you have said before with Esther Crawleys 30-40% recovery paper was aimed at NHS commissioning and keeping her clinic open. Not at patients. When interviewed she's the only one that describes the actual experience of CFSers in concrete terms that Jo Public can understand. And she talks of pacing not recovery.
Then there is the larger context. If you read some of Peter Whites early responses post PACE he talked about massive cuts that are ocurring in the NHS.
We know that tHe NHS has to save 20 Billion over the next four years. Thats a lot of money! Services across disciplines are being slashed. And a number of CFS clinics are under threat or slated for closure. For the patients that use them this is a serious loss. So I would suggest PACE spin is not a personal insult to us but a necessary piece of politics in the face of the devastating cuts to the NHS.
So they lied about the efficacy of misguided approaches to treating CFS in order to get more money for themselves... for our own good? Do you think that their attempts at building up an alliance with you, and creating the impression that they're on your side etc could have misled you here?
Do you know where Peter White talked of massive cuts in the NHS? I don't remember that.
I don't think that misrepresenting reality is necessary politics. I think it's disgusting and manipulative quackery, which stops many CFS patients from being able to trust their own doctors. Do you really think that the claims that they make in their medical papers do not affect the way the CFS patients are treated? By doctors? By insurance companies, the DWP, friends and family?
No doubt they're uninterested in the psychosocial harm caused by their action though - they can't get paid for that.
Trying to get more money for the treatments one provides for CFS by misrepresenting their efficacy is just fraud, and should not be tolerated. On top of that, their misrepresentations have a profound affect on the way in which patients are treated - the recent FINE trial provided 'rehabilitation' on a decondtioning model of CFS, and led to therapists viewing patients as "ungrateful bastard who didn't want to get better"
http://forums.phoenixrising.me/showthread.php?15431-We-are-b****ards-who-don-t-want-to-get-better.
If you've been ill for five years, I expect that you will have had many people treat you with disdain because they believe that CFS is a result of deconditioning/fear of exercise/refusal to acknowledge depression - this psychosocial harm is a direct result of the psychosocial claims of people like White, and I think that they should be held accountable for it.
@ Astrocyte: I'm kind of interested in your views, because you're not denying reality, you just seem unconcerned by it. It's very pragmatic and functional, but it's certainly not how I would want to approach life. To be honest, I think that it's a bad thing and that it makes it easier for those in positions of power to mistreat those in positions of weakness. It also seems to mirror a lot of the things that I dislike about the psychosocial approach to CFS.
Do you think that the CBT you received had any impact upon your own notions of responsibility? If you heard about Crawley misrepresentations of the efficacy of the treatments she is paid to provide prior to your CBT, do you think that you would have been more upset by it?
I'm not saying that you've been brainwashed! - and it could well just be that your own ideological preferences are close to those of White, etc. But I have noticed that those with CFS who have found CFS-CBT most helpful to end up with pragmatic notions of morality and responsibility.
I'm trying to avoid writing with a sense of personal animosity that I do not feel - but I think that I really disagree with some of your value judgements, as you no doubt disagree with mine. Sorry if that means that I come across as being too aggressive - it's an ideological disagreement rather than a personal one, and I'd be interested to see exactly why we disagree.
I love it. I think its very unlikely that my experience at Barts is anomalous (at Barts anyway). I also had an initial assessment with another therapist there who was also very on the ball. THey have four therapists at Barts and they all do mindfulness. Mindfulness in itself brings a certain wisdom to procedures.
