good sparring @Robert 1973GOTCHA!
good sparring @Robert 1973GOTCHA!
I actually got my reply a bit muddled, and mistakenly had some of an old edit in the mix, which I thought I'd abandonedi think it is PR - if he's fishing for angry responses he wants his own tweets to be perceived as rational/concerned - so he can use the thread if he gets any nuggets of militancy
Robert McMullen@RobertHMcMullen
So, would you like to apologise for saying that “some people with [ME] do not push themselves to recover”?
Maybe what Dr Sharpe has to realise is this. The only realistic way forward for care in ME in the UK is going to be to make use of people already employed to do that and to recruit new people who will have to be trained by those already involved. Until the penny drops with all these people that there is no basis for using CBT or GET or managing on the basis that the condition is psychosomatic we are stuck in negativity.
The positive move we can make at present, and it would be a major positive move, is to educate these people sufficiently for them to realise they need to start afresh. It would be very much easier if people like Dr Sharpe took a vanguard role in that, and gave lectures pointing out that the BPS model is groundless and disproven, at least on prima facie consideration. Or at least agree to stand aside. Similarly for Simon Wessely. But without that we are stuck with having to shout from the rooftops that PACE is rubbish in the hope that stick-in-the-mud service providers finally get the message.
Given their track record with ME, I'm not sure they can be trusted with any research.It is best they all step aside, they have been toxic, they can never be trusted again with ME research.
Given their track record with ME, I'm not sure they can be trusted with any research.
Either he has a cunning plan ...or he is heading for a mid life crisis
is that s w in the lifeboat.
The positions are usually exhaustive.What happens if both positions are wrong?
I would have thought his connections with the authors and with the project would need to be disclosed, and would disqualify him. But then the Lancet doesn't seem at all like a scientific journal, more like a magazine, and the editors had already promised to promote it even before it was peer reviewed, so I don't expect peer review was anything more than a rubber stamp.That’s one of the possibilities I was alluding to – but I didn’t want to make myself look like a prat if it was a ridiculous suggestion. @Lucibee, who is much more knowledgeable than me, seemed to think it was more innocent that I was implying. Any thoughts @Jonathan Edwards @dave30th @Carolyn Wilshire?
Or MAYBEEeeeeeee they are working for the dwp ( whatever your insurance for government is)?I’m beginning to think he is clueless after all![]()
"So here is a challenge for ME activism:
Can you articulate what treatment you want as opposed to what you don't want?"
Yep. No treatment aside from palliative support is better than treatments that make us worse and are sometimes forced on very sick patients, or where they are coerced into doing them or lose their entitled benefits, both private and state benefits.
I myself volunteer to try drugs that are potential treatments as suggested by the ME experts hthe real experts) Cyclophosphamide comes to mind, but there are other drugs such as the ones used in rheumatology."So here is a challenge for ME activism:
Can you articulate what treatment you want as opposed to what you don't want?"
Yep. No treatment aside from palliative support is better than treatments that make us worse and are sometimes forced on very sick patients, or where they are coerced into doing them or lose their entitled benefits, both private and state benefits.
Another thing to point out to him is that we are positive and looking forwards. But the legacy of the PACE trial is holding us back. Medical professionals are still quoting the results to stop us from getiing benefits, insurance payouts, other medical treatment which might even be as basic as supplements. But we can't get any of that because we are still told to excercise and have counselling. That is why we are still banging on about it!We need him to confirm he doesn't think its ok to re diagnose children with PRS like Esther Crawley does and while hes at it he could perhaps set the record straight with her claims of 60%? of people recovering in the PACE trial.
On the subject of "what treatments do you want then", it may be a last ditch effort before tomorrows hearing in parliament to get someone to tweet something about some unproven biomed treatment etc, so if he gets called to any hearing in parliament he can call double standards on the "activists" and claim to be the level headed one.
Can someone just tweet him back with, "we don't want faith healing, witchdoctory, GET or CBT any other nonsense treatments as part of healthcare policy and will just sit tight until something that works is on offer so that we are not made worse by a trial partly funded by the DWP".