Action for M.E. 2019 AGM and conference 15th October 2019

I understand your point but perhaps one deeply penetrating question to draw attention to the members who might not realise the failings to start questioning?

for the past decade I, with no effect, focused mainly on MEA. I thought AFME were just hopeless whereas mea atleast “got it” more. What I’ve gone to think though is that MEA are mainly a group based around a solitary medical advisor. Ok they have trustees and provide information mainly gif the newly ill and a helpline and magazine which is to some degree impressive with their resources but otherwise Dr Charles Shepherd is acting as a medical advisor would. They’re not really campaigning nor are they really fundraising and whilst Dr Charles Shepherd does “some good” my main criticism of them , beyond the shameful sidelining of the severe. Is their lack of seeming aspiration to fulfill the normal role of medical charity for a significant illness (my reading). Bizarrely they’re hampered (imo) by having no dynamic, aspirational, team leading, volunteer inspiring ceo, Action for ME however now have 2 in that role.

Coming onto AFME , whilst I very carefully have made sure I wouldn’t get blocked as many critical patients are on their Facebook and post regularly on their page, otherwise I haven’t really bothered until recently with them. I saw them as just trapsing on in the same disastrous fashion they have since the 90s, initially going all big on alternative medicine, then u turning and supporting the establishment DIY behaviour approach, now finally getting involved more in research but essentially setting up some unsatisfactory CMRC conferences and letting the ME expert group, then CMRC fail to bring us significant developments over a number of years.

However since discussions on here about the nitty gritty regarding income, staff and potential it’s just struck me that surely it’s arguable Action for ME are underperforming given their staff numbers and amount of patients money they spend on salaries?. This is in the context of the UK charity situation with TYMES, IIME, 25%, MEA, MERUK and #MEAction all relying on far less resources. They are the largest UK ME charity and they have the most members and influence. So shouldn't we be asking them to step up? I ask this from the position of our community really needing the same type of national charity other majors illness have (ofcourse respecting the obstacles to fundraising we all know ) my concern is that the community income is being channeled into a charity like AFME where it’s not being used to great effect.

One question I would like AFME to consider is why, given the relative commonness of CFS and ME supposedly poorly supported by the nhs, they don’t have more members. And another is, are they happy, as we approach another new decade , with the progress within UK of this last one?

 

I got my figure from here , which I’m still to read properly. It is 2017-18 so most recent available.


https://www.actionforme.org.uk/uploads/2017-2018-trustee-report-accounts.pdf

 

This is the summary they give for their MUS section:

https://actionforme2019conference.eventzilla.net/web/event?eventid=2138742076

 

https://www.actionforme.org.uk/uploads/pdfs/cmrc-2017-programme-updated-180817.pdf
including Esther Crawley

 

There’s also

And this

 

Thanks for clarifying! I honestly didn't know much about AFME until now. It does seem they should be able to achieve a lot more with all that staff though.....

 

Does anyone know the content of the physio and OT briefings?
Perhaps @PhysiosforME are familiar.
Given the GP info , I am a bit concerned re these

 

Children's section is probably former AYME staff

 

One thing that they avoid talking about is what they think of Crawleys research in particular the SMILE trial and LP; a trial that was facilitated by their now head of childrens services, MJW.

 

"
Morning session 10.30am to 12.30pm

• Voices from our Big Survey, presented by the Action for M.E. staff team
  Presented by our Policy Officer, we will launch key findings from our Big Survey on living with M.E./CFS in the UK.

• Panel discussion, chaired by Jane Stacey, Trustee, Action for M.E.
  Our panel will share reflections on the Big Survey data presented and take questions from delegates. Joining Sonya Chowdhury, Chief Executive, Action for M.E., on our panel, we are delighted to welcome:
  • Dr Nina Muirhead, Buckinghamshire Healthcare NHS Trust; and Medical Education lead, CFS/M.E. Research Collaborative
  • Ed Scully, Deputy Director, Primary Care Policy, Department of Health
  • Ben Howlett, Managing Director, Public Policy Projects

Here is the link for the morning session: https://zoom.us/s/175326426 "

 

Has anyone else managed ot actually log in? I’m on safari on iPad and I can’t. I managed to connect via downloading the zoom app. Well I thought I was. No go. Fort knocks defences.., I’m in. Are AFME Going to put up recordings? If not I think that we should lobby on this because live stream is difficult for severe patients to manage. The sound quality is a lot better than other years but I found it difficult to access and can only watch in little bits.
Dr. Nina muirhead is very very good. She’s slamming the education resources that are out there currently, She’s just used the word horrific.

I don’t think the outsider panelist’s have much grasp or know that good ME care is beyond just getting a good Gp at the start. One panellist has said its going to take a long time to change GPmindsets and that biomedical research is Key to change. I very much doubt he’s aware of the ME situation past ten years and how long we have been waiting already and that biomedical research isnt much Happening.

Sonya Chowdhury says ME isn’t MH. it’s unacceptable what medical professionals are being taught. Waiting on NICE is a lazy excuse and we shouldn’t be doing that. We can’t wait any longer she says.
she says in other countries there’s good clinical work but that can’t come over here because of the different and hostile framework , risk of gmc reporting etc (However for what treatment?)

 

this appears to be a bit of a contradiction(?)

https://twitter.com/user/status/1184048013293080577



ie AfME spokesperson 'problem is healthcare professionals who do not specialise in ME/CFS', but the quote says the GET was with a physio who specialised in ME

 

Yay David tuller is there. Really grateful he’s Attended.

A frank speaking delight. Says everyone’s covering everyone else’s arse and won’t admit they got it wrong. Says people in the uk system are afraid to speak up but he wasn’t. I think that afme chair Gave a curt response, my interpretation. He always manages to say we should just cut through the crap... I’m not sure what the panel discussion will achieve but I think that David tuller might have said stuff some of the audience and panelist’s might not have heard so that’s useful . I don’t think the Panelist’s are really knowledgable enough on this area to be on a panel in an informative way, They might have learnt some things themselves but generally they seem to be talking in general terms whereas we need specific challenges addressEd and direction decided .

on cue Sonya says they just hoped to stimulate debate.. ...I personally would have preferred more from Sonya

I think that i Heard a panelist in response to tuller suggest that it would be good if the British press could take the story, help highlight the issues. If he did that’s again ignorance of the whole system in the uk stacked against us. Nothing will change unless people can really appreciate what’s gone wrong and for how many decades.

 

delighted to here Dr Tuller there and asking a question now

 

AFME have said it’s all going on YouTube

 

“When healthcare professionals who do not specialise in #MECFS treated people with M.E. with graded exercise therapy there was a considerable increase in a #pwME experiencing a worsening of symptoms.”

Where does that "who do not specialise in #MECFS” come from?