Cochrane ME/CFS GET review temporarily withdrawn

With the big question mark over Cochrane's head I am not sure there is any advantage to that. And Cochrane have no monopoly on this. Even their perceived monopoly had been shattered by the Gotzsche case and the Americans left Cochrane months ago.

 

The issue is getting hold of the data to enable a comprehensive re-analysis. As we know, some groups only release data if they know the analysis will be "friendly".

 

On that occasion, were the authors' responses to Cochrane put in the public domain? Or was it all kept hush hush? Are we likely in due course to have sight of the to'ing and fro'ing between Cochrane and the authors this time around I'm wondering? Or only the final outcome?

 

Their responses were posted on the Cochrane review, along with Courtney's comments.

 

Given that:

• A major aspect of the review's flaws, is the serious flaws in the 8 studies they reviewed, but failed to pick up on properly.
• There is a month before any Cochrane decision is made public.

Does this mean it might be worth @dave30th doing an article addressing the major headline issues with those 8 studies that were reviewed? Obviously David would need support from others with this I imagine but he knows where to find it . Almost a parallel review, albeit not having the time, nor the need, for a fully rigorous review. Just enough to highlight how crap it would be if the Cochrane revised review did not pick up on the same flaws in the studies under review. In fact would be even better being just a 'light' review, because it would illustrate even more how atrocious it would be for a rigorous review to not pick up on.

ETA: Realise that this has already been raised a little while back.

 

And despite the flawed recommendations for CBT/GET, that it is a physiological disease is also the official NICE position. They just ignore it entirely in favor of magical thinking but they understand they cannot argue otherwise.

So obviously it's a valid position to insist what is already established. AIDS sufferers are also quite insistent that HIV deniers are wrong, as it is established. His comments reflect deep bias and conflicts of interest. With the suspension of disbelief it doesn't really matter now but long-term this is obviously an absurd position to take.

 

This is an ethical problem, not legal. People are getting hurt so there is a legal element but we have no legal standing since harm is not acknowledged in our case, even with thousands of testimonies claiming so and patient surveys confirming it.

Enforcing ethics is down to choice and heavily subject to politics. We already know the facts don't matter in this research since it's all politics.

The best we can do is make this all as transparent as possible, as public as possible, so that when we have a breakthrough in research this is all a huge massively embarrassing record of failure that will then become a very large legal problem.

 

This is definitely part of the larger IAPT project (or whatever the next mutation chaired by Wessely is called). PACE is a pillar of this because it supports CBT and GET in a disease that, despite the flawed recommendations, is still defined by NICE as a physiological disease with devastating impact on quality of life. This is a foot in the door that gives the whole thing credibility to expand.

It's largely about austerity politics, driving chronically ill people away from expensive health care and into "deal with it and shut up about it" therapy. We are just one piece in this.

 

Same as AHRQ did in the US. They concluded rightfully that the Oxford criteria are crap. Removing studies with Oxford criteria made it clear the effect was an illusion. Case closed: no evidence.

A lot of this is down to the Oxford criteria and Sharpe and Wessely will defend them to no end. This is a particular point to argue in the NICE review. The criteria are so overly broad they make any conclusions from studies using them worthless. Deprecate those. Adopt ICC. Then things can actually work from an objective evidence base. Until then they managed to get away with a Chinese herbs study so they can pretty much get away with anything. It's all garbage in for the purpose of garbage out.

 

There's no good reason to think that ME/CFS is a psychological, but the cause of ME/CFS hasn't been established yet, and it's worth being cautious with ny claims here given the way in which they're trying to attack us for being ideologically opposed to potential psychosocial models of illness.

 

Have we even tackled Cochrane over the issue that the Department of Health, the WHO ICD, and NICE all list ME/CFS as a neurological disease, yet Cochrane lists it under common mental disorders.

Why do they even need to "consider whether they should change this or not" its bloody obvious they have got it wrong in Cochrane listing.

Cochrane are looking like they are being ridden all over by the BPS crowd its just pathetic.

 

I'm not sure this holds up. The choice offered by Blakemore was physical or psychological, not physical or biopsychosocial, which would have been in line with the supposed official view, and which would have required a different response.

 

I wasn't defending Blakemore's view at all, just suggesting cautious language on the matter of causation, particularly given all the prejudices we face.

 

But none of the researchers are arguing it is psychosomatic, just that psychological treatments may be beneficial to some and only because the fudged stats demonstrate it. Of course they are lying and have written extensively that they believe it is psychogenic. But they need to maintain the fiction that they acknowledge it is a genuine disease because they have done so in the past, which NICE sort of recognizes.

And they need that fiction to extend it to other chronic diseases. They want to show that the psychosocial model can work with MS, diabetes, IBS and chronic pain, none of which anyone is arguing is psychosomatic.

Blakemore actually said the quiet part loud. As he was head of the MRC he should not even be taking any position, otherwise it exposes his bias and conflict with this research. It doesn't really matter as long as there is suspension of disbelief but this was a pretty big blunder, like a judge being caught off-mic saying "the bastard is obviously guilty, I don't even need to see evidence" and adding some prejudicial slur.

And since they maintain the fiction of a biopsychosocial model, they have to pay lip service to the biomedical research that has provided a huge body of evidence. Of what is unclear, but there is extensive evidence and they can't refute that. All the psychosocial research is arguing is that therapy and exercise may be beneficial to some. They say absolutely nothing about the mechanisms. Blakemore spoke of it being psychogenic. Huge blunder.

 

I must have been busy when this came out and only skimmed it. I have had a better look. It seems to do the job very well.

 

Dont we even have a technicality like false representation ( they did not disclose the ties) I am sure that somebody can come up w something. Insurance fraud charges... we don’t need it to stick we need noise and make their life hard. Let me see what I can get together. I have seen crazy people suing for less crap!!! Why can’t we?

 

Being cautious isn't doing us any good, they will accuse us of it no matter what we say. If the charities had insisted it was a biomedical problem right from the beginning we may have been better off today. You could tell who was on our side by the way they would say that "maybe there were some people with psychological problems" whereas the BPSers never admitted there could be genuine physical issues.

We may not know the cause (we don't know the cause of a lot of diseases, like MS or coeliac disease) but there is enough evidence to show that something physical is causing an ongoing problem. The AIDS activists didn't say "well maybe some of us are ill as a judgement from God but the rest of us have a physical disease"

 

You're absolutely right - they will accuse us of it no matter what we say. But I think @Esther12 is saying "Let's not make their job easier by giving them extra ammunition when we don't have to".