United Kingdom: Action for ME (AfME) news

Action for M.E. held their AGM last week. They were unable to include the CEO Forward Look and Q&A within the event as planned so have

"set a date for a webinar on 28 September 2021, 3 – 4pm where you can hear from our Chief Executive, Sonya Chowdhury and Medical Advisor, Dr David Strain, about our exciting plans for the future. You can register for the webinar by following this link: https://us02web.zoom.us/webinar/register/WN_wEpAuOZBQtupqIDH__Ld0w

We will do our best to answer all questions within the webinar itself. If you would like to submit a new question please email this to media@actionforme.org.uk by 10am on the day of the webinar."

Attached is their annual report 20-21.

 

Only just catching up with this. An object lesson in how not to make a complaint to the Charity Commission.

 

Merged thread
From Twitter
Some may wish to take the survey and comment

https://twitter.com/user/status/1435242074023112714

 

The short comment form for the AfME / M.E. Trust merger closes tomorrow morning. I've just sent some brief comments.

 

I commented on this too, both directly to the M.E. Trust (I use the physio services) and via the online form.

Had an email from the M.E. Trust this morning saying that the respective boards have decided to go ahead with the merger. Very sad this is happening.

 

Thanks for the update @Daisy.

Just to clarify, who was the email signed by, ie who is going to be the new "Director of Healthcare Services".

 

@MEMarge

Sorry for the omission - the email was sent by Helen Winning, CEO of the M.E. Trust.

 

Could you point me to more information about the Bristol clinic's part here please? I went through the Bristol clinic.

Thanks

 

Action for M.E. - Long Covid and Myalgic Encephalomyelitis

This webinar is in place of the AGM Forward Look and Q&A that could not take place as planned on 2 September 2021.

https://www.youtube.com/watch?v=YjJgouMq_xM

 

19:17 Dr Strain talks about the PACE trial

 

Nice to see this.
Small quibble: I'm sceptical about the idea that the PACE Trial investigators are not to blame for using the Oxford criteria, that they used it because of advice they got? I know, for example, that Peter White is very much his own man and would consider himself very knowledgeable and not in need of advice on this topic, nor the sort of person who lets himself get dictated to by others.

 

Good faith? I guess it's sometimes difficult to tell whether the BPS brigade are quacks or con men. There's a video of Peter White slagging off the CCC because it has "too many" symptoms and he says the more symptoms there are, the more likely the illness is psychiatric. Basically trying to put patients off using stricter criteria.

I wonder whether AfME think it was good faith when Simon Wessely defended the outcome switching in the PACE trial.

Found it:

https://www.youtube.com/watch?v=JWsFvmuJxMA

 

"The Oxford criteria are a set of criteria for the diagnosis Chronic Fatigue Syndrome published in 1991 by a group mostly consisting of psychiatrists, and was designed for research.[1]"
"
Authors
Michael Sharpe, Len Archard, Jangu Banatvala, Leszek Borysiewicz, Anthony Clare, Anthony David, Richard Edwards, Keith Hawton, Harold Lambert, Russell Lane."

 

That is an abbreviated list of authors. There were also:E M McDonald, JF Mowbray, DJ Pearson, TEA Peto, VR Preedy, AP Smith, DG Smith, DJ Taylor, DAJ Tyrell, S Wessely, PD White.

 

"at the time that they were given advice
20:04
with retrospect that was wrong advice
20:07"

According to the TMC minutes

https://www.s4me.info/threads/canadian-consensus-criteria-not-suitable-pace-trial-minutes.8394/

hmm.

 

Podcast
Action for ME Sonya Chowdhury
by David Niven | Nov 1, 2021 | adult care, charity, Children & Social Care, covid19, disability, discrimination, education, government, health, humanitarian, International, Latest Episode, Mental Health, Myalgic encephalomyelitis (M.E.), Podcasts, Research,

https://socialworldpodcast.com/121-action-for-me-sonya-chowdhury/

 

Opinion piece: How Is M.E. Treatment Impacting Patients’ Right To Healthcare? by Sonya Chowdhury

"Imagine knowing you’re ill and explaining your symptoms to the doctor, only to have them stop listening halfway through because they’ve already diagnosed you and everything you say will confirm their preconception: it is stress, you’re working too hard or something similar. The disabling physical symptoms of extreme fatigue, muscle aches, headaches, dizziness, and many others are dismissed. Or you’re just not trying hard enough to get better.

Access to healthcare is a human right, and it’s one being denied to a large proportion of a quarter of a million children and adults living with M.E./CFS in the UK alone. It has a long history of being dismissed and trivialised, leading to patients being neglected by medical professionals, forgotten by researchers and ignored by the government."

https://eachother.org.uk/how-is-m-e-treatment-impacting-patients-right-to-healthcare/