Action for M.E.'s AGM and Conference 2018

A bit dismayed/disturbed to hear CofM refer to ME and others (Fibro IBS etc) more than once as MUS.

 

Did she say Medically Unexplained Symptoms, or did she say medically unexplained symptoms? Maybe the problem is that some biopsychosocialists have misappropriated the english language.

 

Hi Hutan. thanks! I've been on the CMRC patient group since its inception almost 2 years ago now, and we are as focussed as ever on getting / helping obtain funding for high quality biomedical research for the illness. As I pointed out!

I had no idea what Lady Mar was going to say before her talk, that was interesting. She doesn't pull her punches. I wasn't involved prior to 2011, but I suspect I'm happier now with the organisation / the CMRC than I would have been back then....

I've only just become a trustee of AfME, so early days. I'll certainly keep a close ear to what they come up with in 2019. The other trustee elected that day has the same opinions as me about research direction; she still has the wretched illness. Mostly I'm well these days. (currently got a Xmas bug tho!) .

 

I thought Phil gave a good talk.

 

Interesting listening to Phil Murray, and so important for everyone involved and especially doctors, listening to the first part and the way to recovery. We obviously need a lot of knowledge on the cellular level and giant investments in biomedical research, but in the meantime the above everything else message is: early diagnosis and proper rest/steps in the acute phase. Can not be emphasized strongly enough how important that is for long-run prognosis and chance to improve.

 

It wasn't in her speech but in the Q&A afterwards. Having used the term she said 'that's a horrible word' so I'm guessing it was Medically Unexplained Symptoms, but she did do airquotes.

 

@Sly Saint Ok I see. I couldn't remember that bit well enough and didn't want to watch it again to check.

 

Chronic fatigue syndrome or myalgic encephalomyelitis
BMJ 2007; 335 doi: https://doi.org/10.1136/bmj.39316.472361.80 (Published 30 August 2007)

1. Peter White, professor of psychological medicine1,
2. Maurice Murphy, consultant physician1,
3. Jill Moss, founding chair2,
4. George Armstrong, co-chair3,
5. Sir Peter Spencer, chief executive officer3

https://www.bmj.com/content/335/7617/411
(some good responses)

Peter Spencer was CEO of AfME from 2007 to 2012.

In response to the PACE trial results:
"
But the largest patient group, Action for ME, which had been involved in developing the trial, rejected its findings. Sir Peter Spencer, its chief executive, said: "The findings of the PACE trial contradict the considerable evidence of our own surveys and those of other patient groups.

"Of the 2,763 people with ME who took part in our 2008 survey, 82% found pacing helpful, compared with 50% for CBT and 45% for GET. Worryingly, 34% reported that GET made them worse."
https://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment

apart from that statement what did Peter Spencer (or AfME) do to oppose the BPS juggernaut?