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

Esther12 said:
“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?
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It's back to their old refrain. From memory the AFME collaberation with Peter White in this BMJ

https://www.bmj.com/content/335/7617/411


It sounds as if they have not learned the lessons of PACE even after all this time
 
One problem i have is AFME do love a good survey

so on top of this “Big survey of 2019. There have been.

Campaign and survey reports | Action for ME



2017 there were surveys Published on services provision and false accusations against parents.
2015 there was survey “close to collapse “ on social care and ME and a general survey report I think that they Spent a whole year on called “time to deliver “. ...
2014 there was survey & report “time to deliver in Scotland “ and “my life stopped“ - a time to deliver survey & report on severe ME

Pacing - MEpedia

in 2001 they had a survey and report “Action for M.E. Severely Neglected: M.E. in the UK—Membership Survey. London: Action for M.E.; 2001.

and then in 2008 there was

Action for M.E. and AYME Survey 2008 – Results

Posted by Action for M.E. on May 4, 2008

This website presents the findings of our 2008 survey, to which 2763 people responded (1799 in hard copy, 964 online).

As with any survey of this type, respondents were self-selecting, therefore they cannot be assumed to be representative without systematic sampling to avoid intrinsic bias. Over 59% of respondents have had the illness for more than five years and of those, 34% have been ill for over 10 years, so the sample could be skewed to reflect the experiences of people who have been ill for a long time.

You can navigate between the following results :-

1. About You
2. Your M.E.
3. Your Current GP and Your M.E.
4. Specialist Health Services for M.E.
5. Treatments / Symptom Management
6. Welfare Benefits and Social Support
7. Additional Analysis


And this was just a quick search from the above links. There might well have been others..,.
but how much difference do they make?

surveying is quite easy, lobbying and campaigning is hard and Action for ME don’t do it.* I remember actually posting in my charming way about the 2015 impressive sounding “time to deliver” survey because it had filled up the social media for months as their big action, then nothing much was done. And here we are again...
 
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Trish said:
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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Yes - this continues to be a huge issue.
There is no understanding that it (GET) simply does not work, and has been shown not to work as PACE reanalysis shows.
Because some may have a " response" to GET, and many with idiopathic chronic fatigue carrying a ME/CFS label may potentially have a positive response there is the refrain that " it helps some people" ( and therefore we should keep doing it). Not knowing those whom it can harm makes not applying a precautionary principle a major duty of care failure IMO.

This may be political backpedaling given AfME's historic investment in the process, and the whole IAPT shitstorm. The boat needs seriously rocked, from the posts here it will not be AfME that start the shoogling.
 
Well that was boring, as expected - AGM's do tend to be boring. Lots of self congratulatory stuff about what a wonderful organisation they are with fantastic staff etc etc.

A few thoughts:

A large part of their work is based around support services for individuals. All very laudable - telephone and web based support on answering questions about ME, and about rights, services, claiming benefits etc, plus all their written materials, and projects piloting mentoring in Scotland and advocacy in parts of England, and their childrens' services.

I think that is all very commendable with one proviso - the quality of the information they provide. We are still stuck with their less than scientifically based information about treatment, and overly optimistic impression about prognosis. They are being incredibly slow at updating them.

Their webinars for therapists and doctors got a very brief passing mention, but we really need to see these to find out whether they are any good. I have serious doubts.
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They have several new or reappointed trustees. I don't know how many people are invited to vote on this, but I noted they each got about 50 votes which seems tiny.
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They boast about their influence on things like CMRC, MRC, WHO etc, yet we have seen precious little result if any from all this expenditure. The excuse was that some things have to happen behind closed doors etc etc.
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They spend about a quarter of their total expenditure on fundraising. They claim that is normal, but if you look at their overall income, most of it is from legacies, trusts, matched funding, grants etc, not donations, and most of those would probably happen without a paid fundraiser having any input. It seems to me to be a huge over expenditure on fundraising staff for the income that results.
 
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I will be less kind, this is an area crying out for progress and hope but I saw little.

For me it was Flim flam, spin, emperors new clothes stuff, amateurish, bordering on polishing waste material. Apparently really great stuff happening but most behind the scenes or abroad but nothing tangible to me.
The international alliance mentioned .... CMRC mentioned, the international advocacy mentioned as needing cost cuts...

The new deputy CEO actually gave the first CEO overview of “achievements”. Sounded better than Sonya. All I could see tangible was individual support as Trish says, then their way of getting progress was more talking behind the scenes to establishment, which ofcourse is really effective. I’m not against providing support obviously but does it need to be so 1-1 for most people? If they provided better literature or surely there could be other cost cutting measures (in context of funding very low amount of research ). If they put more searchable info online it could be used repeatedly and people find it for themselves. And then even if that side is kept up, looking at staffing costs the ceo, media staff and fundraisers are surely underperforming.

Apparently they need Next year to set another new 5 year strategy, another favourite past time. I saw nothing in the future talk about what they plan to do with the latest survey data. I cNt say the last 5 years has achieved much. Afaic Sonya should go. She’s not of the calibre of for example carol head who could comfortably sit with top scientists or government officials and speak with authority and confidence. It’s like having a class teacher in a headship role. I don’t know what a social work background or Barnados work really equips someone for the challenge in our peculiar area. I mean Sonya might point to the CMRC conference as her big achievement but Invest in ME in the UK do that but usually better, and volunteer.
 
I wonder if there could be a coalition set up of IIME for research, tymes for kids, 25% for the Severe, #MEAction for general info and campaigns and advocacy. If they could have a bit extra resource to offer some extra support elements, a decent magazine, helpline etc they could be a complete national charity called the ME coalition or something And be a positive national charity that I would be a member of, that might actually be able to enthuse and invigorate the volunteer community and perhaps draw a large, broad , informed and empowered membership.
 
I can't see the stream and I left the organisation in disgust several years ago, however I did respond to one of their tweets today in this way, 'I understand your dilemma (that of validating experience and offering hope!!) as someone severely ill for 28 years and a daughter ill for even longer. This is an emergency and should be treated as such. it is not a social club, it's an emergency' No reply, I didn't expect one but it felt good to get that off my chest in the few characters that Twitter allows.
 
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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There are likely a few ones out there who have understood that there is a difference between what is usually taught and real life. It's unlikely that all who specialized in ME have bought the sales pitch. Still not good on the whole, but competent professionals should and will adapt.
 
Trish said:
the people from BACME (the therapists organisation) who tell her they are not really doing GET and CBT as described in PACE
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While promoting PACE as the flagship trial that defines the entire treatment paradigm, knowing that if it were retracted it would throw the whole thing in disarray.

Eating their cake and having it too. Expected but absolutely pathetic.
 
Cinders66 said:
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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We're currently writing an article for our physio bimonthly magazine - which gets sent to all members! Keep your fingers crossed
 
Esther12 said:
“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?
Click to expand...

This should not be taken as if they were trying to prove or say that it's better to have an ME specialist. That would be a misinterpretation. In the survey, they presumably asked respondents whether they got GET from from a self-styled specialist or a generalist. Given that the PACE folks always claim that the reason people have bad outcomes is because of inexperienced therapists, this seems to me a very reasonable question to have asked. They were just deconstructing the total data by breaking it down into the different groups. The data show that, while for some responses those who reported getting the intervention from a non-specialist fared fared worse, it was pretty bad all around. People should certainly seek to hold the organization to account, but I don't think that question and the presentation of those responses should be a reason to do so.

I only found out about the event yesterday, so attending was an impromptu thing for me. I found the survey results interesting and I was pleased to see Ed Scully from the Dept of Health there. He seemed thoughtful, receptive and genuinely concerned when I spoke with him afterwards.
 
Also...the MUS session was completely anti-MUS as a diagnostic category. I can see where the description of the session might have made it sound like somehow it was trying to explain why it might make sense to include ME in MUS but that of course was completely not the point. Joan Crawford, a psychologist, is very smart and dedicated, and she made it very, very clear there is simply no evidence for all the stupid claims made by the MUS ideological brigades. None.
 
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