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also - this forum is amazing and everyone is so knowledgeable!
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Another pet peeve for me in articles about ME is the constant statement that "there is no test." First, there's the specter of uncertainty in the reader's mind (no test? Well then all I've heard about it being not real/psych based still seems plausible).
And then there's the fact that it's not true. No, there's no simple blood test that says yes you have it or no you don't...but there ARE good objective tests that, in combination, make diagnosis pretty airtight and, more importantly, can guide treatment that will improve quality of life.
And so few of us have access to those tests. That should be a scandal.
Vasha
What mainstream criticism of the PACE trial has been bad for us, or led to a response that was harmful?
The PACE researchers were spinning about unreasonable militant patients from the get-go, and they've largely been able to define patient criticism of PACE on there own terms because no mainstream publication has been willing to detail our legitimate concerns..
So to answer your question, the only time there was mainstream criticism of the PACE trial was immediately after it was published, and the response of the BPS school turned out to be pretty detrimental to the interests of the patient community in the long run.
I agree that the fact that it is the patients that have exposed the bad science is an important part of the story. But one could add to that that some psychiatrists actually very much agree and are asking if any of their research is up to scratch, and physicians are beginning to see just how much the patients have been duped. So you can end up with good biomedical science chasing the psychiatric moneylenders out of the Temple - so to speak.
What mainstream reporting of criticism of the PACE trial was there? I do not recall any, although I could have missed some. There was a campaign in the mainstream media to present patient's concerns about PACE as unreasonable harassment, but there was not any detailing of what patient's criticism of PACE actually was. I don't see these past successes at preventing coverage of criticism of PACE as any reason to think that coverage of criticisms of PACE would be harmful.
As I said in my last message
but as I said in my last post I don't think we've got the clear and conclusive evidence to back up those claims yet.
As long as this remains a technical dispute between two groups of scientists, researchers and academics about the methodology of a complex trial I think it will be difficult to get the mainstream media interested.
At that point, 75% of everyone was turned away, so I wouldn't read too much into that. My understanding is that it isn't that much worse than for other illnesses, although some here have speculated that it is easier to renew claims than launch new ones. I don't know if anyone has reliable figures, though there was an MEA survey a couple of years after that: http://www.meassociation.org.uk/archive-of-mea-surveys/?poll_page=5I found this on the ME Association's site http://www.meassociation.org.uk/201...nt-work-capability-assessment-benefit-review/
which suggests that more than 75% of pwme are turned away from ESA.
However, that's from 2010.
Once you get rid of the 30% who haven't had a decision or haven't applied, again it looks fairly standard for the time, although patterns in ESA have changed considerably since then. It might be worth asking @charles shepherd, who I'm sure gets plenty of anecdotal feedback.
- If you have applied for ESA (Employment and Support Allowance), what was the outcome?
- Awaiting a decision (10%, 59 Votes)
- Placed in Support Group (14%, 78 Votes)
- Placed in Work Related Activity Group (24%, 136 Votes)
- Refused - successful on appeal (7%, 40 Votes)
- Refused - unsuccessful on appeal (7%, 41 Votes)
- Refused - appeal in progress (11%, 63 Votes)
- Refused - did not appeal (7%, 39 Votes)
- Have not applied for ESA (20%, 112 Votes)
maybe that though would give the wessely schoolers a good opportunity to get their own comment piece in though as a follow up due to their psych views and to state that most psychriastrist do believe in GET and CBT for this (article is going into an UK paper after all and they are bound to notice and respond in some way, I dont think they'd allow that to go unchallenged).
........
maybe it would be better to focus on things they cant challenge so much to not possibly give them a final word there eg some of the science which is being done currently or coming out or the lack of funding being put into such a terrible disease compared to other diseases.