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

Andy said:
If all goes to plan I'll be there tomorrow, I'm intending on more of an observer role rather than taking them to task, as I'm not sure that would actually achieve anything.
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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?
 
Sly Saint said:
their website only shows 2015-2016 (more up to date info available on charity commission website
https://beta.charitycommission.gov.uk/charity-details/?regid=1036419&subid=0)



https://www.actionforme.org.uk/make-a-difference/where-does-your-money-go/find-out-more/

so I guess it depends where you 'put' salaries.
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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
2017-2018-trustee-report-accounts.pdf


How we raised and spent our money 2017 – 2018

Incoming resources

We have achieved a sound underlying financial performance for the third year running. Our recorded total income was £1,268,718, up 86% on last year if non-recurring items are included (up 42% if they are discounted).

Around three-quarters (77%) of our expenditure goes directly towards our charitable activities (see pie chart below). By far the biggest resource needed to deliver these is our experienced and knowledgeable staff team, many of whom have daily one-to-one contact with people affected by M.E. That is why we spend 57% of our total gross expenditure on staff salaries (including employer National Insurance and pension contribution).

We aim to raise £3 to £5 for every pound we spend on fundraising, growing our income streams to deliver more servicesand support.

During 2017 – 2018, we raised £5.50 for every £1 invested in fundraising.

Total resources expended

Overall expenditure was £1,046,797, up 41% on the previous year, reflecting the inclusion of our Children and Young People’s Service, the start of our international advocacy programme, and a greater investment in income generation.

Fundraising: Costs of generating voluntary income (£230,864) plus goods and trading (£4,572) = £235,436

Charitable activities: Communications and policy = £202,307
Charitable activities: Information and support services = £533,717
Charitable activities: Research = £75,337
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This is the summary they give for their MUS section:

For professionals only: Joan Crawford, Counselling Psychologist at North West Boroughs Healthcare NHS Foundation Trust and Chair of Chester M.E. Self-Help, will lead a workshop on Medically Unexplained Symptoms. “This is being viewed within some quarters as a possible way forward for people with M.E., chronic pain and other conditions within the NHS,” she explains. “I will explain why, share a critique of this approach and how to challenge it, including presenting biomedical evidence, in the best interests of your patient/client with M.E.”
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https://actionforme2019conference.eventzilla.net/web/event?eventid=2138742076
 
Cinders66 said:
https://www.actionforme.org.uk/uploads/2017-2018-trustee-report-accounts.pdf
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In the past three decades, we have seen some progress but there is still much to do.
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People with M.E. need reliable information
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We also lead a collaborative group,the International Alliance for M.E.(IAFME
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We developed six new resources
for healthcare professionals:
•
four webinars, shared
with more than 250
GPs and other health
professionals, and led
by a range of professionals including
pharmacist and Action
for M.E. volunteer,
Emily Beardall
•
two professional
briefings, for
OTs and
physiotherapists
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More than 80 researchers, clinicians and patients came together at the
2017 CMRC conference in September (pictured), organised by
Action for M.E. to hear from international scientists leading the way in M.E. research.
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https://www.actionforme.org.uk/uploads/pdfs/cmrc-2017-programme-updated-180817.pdf
including Esther Crawley
£193,752 were designated funds in support of our international advocacy and regional advocacy
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There’s also

Chief Executive
The Chief Executive is responsible for setting the strategic direction for the charity with the Trustees, leading its implementation, and holds delegated financial authority within parameters set out by our financial controls
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And this

All staff members, including the
Chief Executive, have performance targets that link directly to the
charity’s strategies. Progress against these is monitored through regular one-to-one meetings and an annual performance review. An annual • outcomes summary is provided to
the Board to assist with performance management responsibilities.
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Cinders66 said:
They are really apples and oranges as OMF is essentially about research like Invest in ME and AFME, who Only spend about £80 000/ year on research, focus more on support / information/ “empowering”, despite their claims to be tackling injustice etc. So if you look at the staff list there’s 3 for children’s services and support, They provide a mentor service in Scotland I think that , which is convenient for the Scottish nhs who don’t provide services, they have a service on supporting people back to work and a very limited advocacy service covering 2 counties in England and they set up a lobby in Europe which might have folded.

Side note ....I wonder how America survives without national “support “ charities, given we have two. Or does America have smaller state ones that provide a support Role.

Anyway, What I don’t understand Is having 5-6 membership and fundraising when they’re obviously small Fish and achieving little in revenue, several supposed media and communication people ... doing what ? , 4 people in information and support when surely the main points on management could be covered in more literature and then a section on the website where people can ask questions which are then answered and made Searchable for the community to get advice from. Ofcourse people might still need 1-1 but 4? Then the main thing, since the current CEO is so useless and invisible and expensive, why employ a blooming deputy... I think that they Could reduce staff costs to around £300 000 which would free up around £200 000 for research.

If you think of the major recent things in the U.K., although there’s not much, it was the HoC debate which was primarily #MEaction led, there is millions missing - # MEAction , there’s were moves to get increased research funding in Scotland, -# ME action Scottish volunteers led on this I think. And MEA sort of led the way on NICE review. #MEAction and #MEA did an in depth review of the cochrane review, AFME did not. And it seems like #MEaCtion uk facilitated the recent petitioning of the EU parliament for biomedical research funds. I cannot really think of anything else. #MEACtion are with 1 paid staff in the UK?
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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.....
 
Cinders66 said:
They are really apples and oranges as OMF is essentially about research like Invest in ME and AFME, who Only spend about £80 000/ year on research, focus more on support / information/ “empowering”, despite their claims to be tackling injustice etc. So if you look at the staff list there’s 3 for children’s services and support, They provide a mentor service in Scotland I think that , which is convenient for the Scottish nhs who don’t provide services, they have a service on supporting people back to work and a very limited advocacy service covering 2 counties in England and they set up a lobby in Europe which might have folded.

Side note ....I wonder how America survives without national “support “ charities, given we have two. Or does America have smaller state ones that provide a support Role.

Anyway, What I don’t understand Is having 5-6 membership and fundraising when they’re obviously small Fish and achieving little in revenue, several supposed media and communication people ... doing what ? , 4 people in information and support when surely the main points on management could be covered in more literature and then a section on the website where people can ask questions which are then answered and made Searchable for the community to get advice from. Ofcourse people might still need 1-1 but 4? Then the main thing, since the current CEO is so useless and invisible and expensive, why employ a blooming deputy... I think that they Could reduce staff costs to around £300 000 which would free up around £200 000 for research.

If you think of the major recent things in the U.K., although there’s not much, it was the HoC debate which was primarily #MEaction led, there is millions missing - # MEAction , there’s were moves to get increased research funding in Scotland, -# ME action Scottish volunteers led on this I think. And MEA sort of led the way on NICE review. #MEAction and #MEA did an in depth review of the cochrane review, AFME did not. And it seems like #MEaCtion uk facilitated the recent petitioning of the EU parliament for biomedical research funds. I cannot really think of anything else. #MEACtion are with 1 paid staff in the UK?
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Children's section is probably former AYME staff
 
Andy said:
https://www.actionforme.org.uk/news/attending-our-agm-and-conference-via-webinar/
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"
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?)
 
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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.
 
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Sly Saint said:
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
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I may have mis-remembered, but I thought the data showed those treated by therapists who did specialise in ME did even worse.

It was good to see the man from the Department of Health taking notes on the points made by David Tuller and Andy's question about recording of harms.

I thought Sonya's response to the question about what AfME is doing to talk to therapists treating people in CFS/ME clinics was pathetic. She seemed to believe whatever the therapists in the clinics say, and the people from BACME (the therapists organisation) who tell her they are not really doing GET and CBT as described in PACE, and are really treating patients as individuals and doing what is best for each patient from their clinical experience and the feedback they get. Sonya doesn't seem to understand that this is hugely problematic.

She also defends AfME sharing information about 'what people find helps them'. And seems to think there are valid treatments elsewhere in the world that UK patients should have access to. She showed no understanding of the need for scientific evidence that these treatments actually work.

She said their booklet on pacing has been revised and will be published soon.
 
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