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I think that Charles Shepherd may have given us a little snippet of a sneak preview during the Q&A after the screening of Unrest by the UK ME/CFS Biobank.

He was responding to questions about using the film to persuade the medical establishment that this is a real disease and to improve the lives of people with ME. He broke his response down to three veins: media, politicians and the medical establishment. The transcript of the relevant part is below.

I'm sure I've also read or heard something in the last couple of days about changing the composition of the NICE review guideline panel (edited) but the source is eluding me.

[@9:45]..Now, the hardest nut to crack is the third one; that is, changing the minds of the medical establishment.

Now, one piece of really excellent news, which you may or may not have seen, is that this wretched NICE guideline, which we’ve been maintaining for many, many years is not fit for purpose, is finally going to go. The NICE guideline has died, right. It is obsolete. It is not fit for purpose. NICE have finally got the message.

This has not been easy and it has largely been thanks to the patient community and the charities keeping on and on about the need to review this guideline. You may have been one of the 15,000 people who signed the petition to get the NICE guideline reviewed.

The medical establishment tried to prevent it being reviewed but they lost. NICE have got the message: this is going.
The bad news is that it’s not going to be buried for three years. The….NICE are going to start absolutely from scratch.

We had a meeting at the House of Lords on Tuesday this week with Professor Mark Baker, who’s a very senior person at NICE, he’s an incredibly nice chap and he is incredibly encouraging in what he says about this guideline. I really do believe we’re going to get a guideline out of this that meets the needs of people with this illness but as I say it is going to be a long, slow, bureaucratic process. We’re not going to get this new NICE guideline ‘til October 2020.
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My issue is that this gives the BPS crowd three more years to pump out more shit just as Crawley has been doing and change the current NICE guidelines back to the same ones in three years or something even worse.

If something is not fit for purpose why the F**k would you just carry on using it for three years?

Doctor..."you have cancer, the current treatments are not fit for purpose but I am going to prescribe them for you for three years anyway"

Bollocks!!!!
 
@large donner , it's Charles Shepherd's stated view that they are not fit for purpose. No doubt NICE's official stance would be that they were acting on the best evidence available at the time, blah, blah, blah.

As far as I'm concerned, the BPS crowd can churn out all the crap papers they can manage and hopefully the SMC will continue to support them, although the recent reception of the SMILE trial might give them pause for thought. Meanwhile, the biological evidence mounts.
 
Scarecrow said:
@large donner , it's Charles Shepherd's stated view that they are not fit for purpose. No doubt NICE's official stance would be that they were acting on the best evidence available at the time, blah, blah, blah.

As far as I'm concerned, the BPS crowd can churn out all the crap papers they can manage and hopefully the SMC will continue to support them, although the recent reception of the SMILE trial might give them pause for thought. Meanwhile, the biological evidence mounts.
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I reckon by 2020 we're gonna have 3 effective drug trials. Rituximab, cyclophosphamide, filgotinib. That would be absolute gamechangers.
 
Sasha said:
I thought you'd made that one up, just to catch us out!

But it's real: https://en.wikipedia.org/wiki/Filgotinib

I've never heard of an ME trial on it, though - have I missed something?
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By my knowledge it's being trialled for a number of diseases like ulcerative colitis, crohn's disease, RA but M.E. aswell. Can't however find the stuff about M.E. again. It's a Jak-1 inhibitor whatever that means.
 
Solstice said:
By my knowledge it's being trialled for a number of diseases like ulcerative colitis, crohn's disease, RA but M.E. aswell. Can't however find the stuff about M.E. again. It's a Jak-1 inhibitor whatever that means.
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After a bit of googling, I see that it was mentioned on another forum as something that Kenny de Meirleir was rumoured to be considering trying for ME/CFS but there's no information about a trial, AFAIK.
 
I found the other reference to NICE at the UK ME/CFS Biobank / Unrest Q&A. It was by @Jonathan Edwards , not Charles.

[@23: 46] There’s been another question about NICE and I think Charles has probably given a very good account that things seem to be changing. What is going to matter is who are going to be the new advisors and I think….we don’t want to be too optimistic.…but I think Charles would agree there are signs that some suitable people may well replace people who have been unhelpful in the past. Did a hear a little laughter from the audience? I’m optimistic but Charles has the inside information.
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Thanks @Skycloud . I wouldn't have bothered searching if not for your memory.
 
Sasha said:
After a bit of googling, I see that it was mentioned on another forum as something that Kenny de Meirleir was rumoured to be considering trying for ME/CFS but there's no information about a trial, AFAIK.
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There won't be an official trial by Galapagos / Gilead, these are the official indications:
http://www.glpg.com/clinical-pipelines

The idea is that it might be prescribed for de Meirleir's patients if (unofficial) tests are successful.
Best case scenario for market launch is end of 2019.
 
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