Cochrane ME/CFS GET review temporarily withdrawn

I took it to mean that she was saying "Patients have no more valuable insights into their condition and how it should be treated than any random person who knows next to nothing about the illness."

 

Interesting Clare do you have a dog in this fight? Are you declaring a COI in your tweets. Patients COI? Laughable!

When the DWP helps to fund a study aimed at reducing benefits of sick people and those sick people point out flaws in the study often from their beds with no funding, just pen paper and calculators its just laughable that she should claim they are funded by powerful lobby groups.

I tell you what is funny though is that no one brought up COIs in this current twitter feed except her? Is this a little subconscious slip on her behalf?

Lets compare the COIs of people who have Insurance lobbying interests, high ranking government influence positions, knighthoods and years of poor quality studies behind them whilst in receipt of public money at the same time they admit to being behind PR stories in the SMC yet could not back up any dubious claims they made to the judge about patients in FOI hearings whilst at the same time refusing to realise data to prove their claims.

Then there's the patients whose interest is in getting better who have been helped by hundreds of independent scientists now signing letters and such pointing out flaws on the body of work from the above types of people. One of whom just so happens to be her husband which she fails to mention in her tweet whilst claiming patients should be declaring COIs.

 

I am such a cynic, this withdrawl feels too good to be true, like they have withdrawn it just to placate people & then will make no changes & release it again with the line "you can all shut up criticising now - we have reviewd it as asked to do, & our questions have been answered to our satisfaction" Ok CC what were these miraculous answers? - "never you mind what the answers were, thats our business"
I hope i'm wrong. Please God let me be wrong!


If i am, then all this 'patient activist' stuff is a massive, massive own goal........ Because the more widespread & powerful that story gets, the more those who believe in Cochrane will start having a go at them "why did you let lobbyists make you do this" "how can you have allowed yourselves.... etc etc etc" and Cochrane will have to explain further in order to defend their reputation.... which will mean the truth will get told to many more people, docs & scientists among them, than if they'd simply allowed the withdrawl to go unnoticed/with little fuss

 

Ah ha, you are from Yorkshire? That explains alot.

 

UpToDate cites this Cochrane review (and PACE) when they write to doctors: "Prolonged lack of exercise in patients exacerbates physical weakness, and adherence to GET alone can be beneficial."

Thanks to all involved in making this happen.

 

There have so far only been one sided articles and not a balanced one to counteract. But in total (and if things don't get worse in the following days, fingers crossed), the Reuters story has only be reused by a small number of second rate newspapers.

 

https://twitter.com/user/status/1052968845152067592

 

The Guardian is probably working out how to get a bigger feature out of this as we speak....

 

Me too. God's own county.

 

In this case I'm happy to say I think you probably are . I think Cochrane have done this realising they stand on a cliff edge, and will have been closely following EC's and MS's massive own goals recently, and the general dismantling of the supposed science behind PACE etc. I think this is their move, their one chance, to avoid that black hole and do what they are supposedly famed for, standing by good science. In which case I suspect old boy networks will count for little, being as they must realise that would simply enmesh them further into the trap they very much want to avoid.

I think this patient activist clamour is brilliant! It's a perfect audit trail of how they lack really good science to underpin their review. It just reinforces, over and over, what their detractors have been pointing out all along - that in the absence of scientific argument, they instead try to divert attention from that by smear campaign tactics. It is all so very tacky, and they are making it wonderfully obvious, at the very time they should be falling back on demonstrating their good science ... but of course they do not have that to fall back on.

 

Here is a link about the experiments. There are plenty:

https://www.independent.co.uk/voices/revered-and-reviled-profile-colin-blakemore-1247128.html

 

We need to stop being distracted by kittens. The more pertinent thing here is that Blakemore is equating the sorts of activists who plant bombs under cars and send scary things in the post, with patient activists who campaign for better rigor in scientific research by writing polite letters to Cochrane and The Lancet.

 

That is true ,but on the basis that it is important to know one's enemy, one should know of the experiences which formed Blakemore's views and opinions. He apparently had experiences of a completely different nature to Wessely, and only by understanding the kitten story can that be grasped

 

Me three!

 

Thanks for writing to them, @SallyC

 

Should I put out another video with George on my lap? My first one seems to have garnered more remarks about him and the old bloke whose lap he sat on than the actual walking race content.

 

Surely Cochrane won’t sit back and allow the spin that is being put on this, will they? Their reputation is already damaged enough by having to withdraw the review, but to accept being portrayed as having caved in to an unscientific mob of activist would surely be fatal. It appears that the CDC didn’t put up with it from the SMC (see: https://www.s4me.info/threads/cdc-responds-to-false-smc-factsheet-claim.4355/) and I would be surprised if Cochrane did not hit back. I suppose the positive is that Cochrane will rapidly be learning who the real mob are, and how they operate.

 

https://pacegranskaren.wordpress.co...s-rapport-om-gradvis-okad-traning-vid-me-cfs/

https://translate.google.com/transl...m-gradvis-okad-traning-vid-me-cfs/&edit-text=

 

https://twitter.com/user/status/1052860112933666818

 

Medscape has shared the Reuters-article. A pity they didn't do their own write-up..
Journal to Withdraw Chronic Fatigue Review Amid Patient Activist Complaints