Support and inform Scottish MP Carol Monaghan ahead of her debate on the PACE trial in Parliament, Tuesday 20th February 2018

I notice they have neglected to mention the many scientists and researchers who have criticised it.

 

Maybe people on FB would like to share the story and point that out?

 

Which is why the debate is crucial ... sincerely hope Carol Monaghan makes that point very clear at the outset.

 

90 minutes on basketball, and 30 minutes on PACE. Fine! Move on folks.

 

I fully agree with your disgust at this Graham, but I think it needs to be seen in context. As yet the wider world still has no real understanding of ME, nor interest in it. And although there are highly political aspects to the PACE trial, it has always been successfully kept under wraps; politicians and parliament know virtually nothing of it. Everything has to start somewhere. I don't understand the parliamentary process, but I imagine an MP has to vie for floor time - I suspect Carol Monoghan has done extremely well to get the time she has. If it goes well then hopefully it will act as a "foot in the door" debate, maybe then moving on to wider exposure of the issues it raises. Issues we know only too well, but which people outside our bubble don't have the faintest inkling of.

If the wider discussion moves into the political arena, then maybe media reporting of it might be less obfuscated; presumably the SMC would be far less effective at influencing political reporting than science reporting, given political reporting does not go via the SMC.

 

I did a tweet:
https://twitter.com/user/status/965178889181040642

 

Have just emailed Carol re the shortcomings/harms etc with the majority of the current CFS clinics and that PwME do NOT want more of the same.

I have outlined in brief, some of the useful services that clinics could provide and that a few do. I know of two, one clinic near Manchester and one nurse ? in Cornwall. Does anyone else know of any good clinics.?

 

Suffolk was trying to go biomedical. I don't know what its current status is:

http://forums.phoenixrising.me/inde...nter-goes-biomedical.40268/page-4#post-826626

 

Fair comment @Barry , but I wasn't pitching my complaint at Carol's efforts, more the fact that even after a Chief Medical Officer's report in 2002, the Gibson Report in 2006, the EDM in 2010, the numerous meetings held by the ME group in parliament, the debate on the recovery figures led by the Countess, and the showing of Unrest, it's still at the "introductory" level. Hence the "Wessely" comment: until this all really starts to take off, he'll not be feeling any pressure. My hopes are pinned on NICE, but that's just my eternal optimism.

I'm only too pleased that Carol is giving it a whirl.

 

No, I fully understood you were not knocking Carol's efforts. It is immensely frustrating that nothing seems to change despite all efforts. I'm just hoping that the general mood is changing, and that some things may be harder to sweep under the carpet now. I think that even though the outcome of updating the NICE guideline is not yet known, the very fact they state it is being fully updated, gives strong credence to arguments about the flawed underpinning of the existing guideline; the detail doesn't matter, so far as much of this is concerned MPs don't know there 'arris from their elbow - it's the broad brush strokes that might get them interested. Which is why I'm hoping the COI approach might make them prick their ears up; a bit of scandal might interest them enough to want them know more, for self-preservation reasons if nothing else.