Discussion in 'General ME/CFS News' started by Andy, Jan 4, 2018.
Seen on AfME's Facebook page.
Not sure i would want to recommend this to my GP before i know what they will be talking about, what approach they will be taking.
I saw the word Bristol.......
So I did a little search:
Hazel O'Dowd is the Head of Dept.
This chapter from Fiona Wright includes uncritical citing of PACE (including the recovery paper), directs OTs to the PACE CBT and GET manuals, and includes stuff like: "Recovery from CFS/ME requires goals that envisage a healthy life (Prins et al. 2006). While full recovery may seem some way off, finding a focus for change is essential."
https://books.google.co.uk/books?id...EIWzAI#v=onepage&q="Fiona Wright" CFS&f=false
She seems like exactly the sort of person we should expect Action for ME to be promoting. I'd want any doctor I had to see to be kept well away from her.
How can someone tell such things to sick people. Just a matter of personal will. In fact, that is not really different from "these bastards don't want to recover".
This is so patronising and disgusting.
She didn't really say that. It can be hard to get across what people mean in short quotes. I thought the chapter was misleading in annoying ways, and while I picked out that bit to illustrate some of the irritating ways things were presented, I don't want to give the impression that it was worse than it was.
Mindfulness the replacement for CBT - mind over matter = I don't mind you don't matter. Effectively rebranding the same pseudoscience that did not sell and met market resistance (tongue firmly in cheek) because mindfulness was originally a non judgemental meditation technique, the moment it becomes directive and judgemental it can no longer be classed as mindfulness anymore than the supportive CBT applied in other health conditions can be compared with directive CBT used for irrational illness beliefs held by psychiatrists.
I didn't like to say...
Look at the great sources of information to draw from!
Fighting Fatigue: Managing the Symptoms of CFS/ME (2009)
Authors: Sue Pemberton and Catherine Berry
Overcoming Chronic Fatigue (2005)
Authors: Mary Burgess and Trudie Chalder
Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME (2009)
Authors: Bruce Fernie and Gabrielle Murphy
Action for ME www.actionforme.org.uk
The British Association for Chronic Fatigue Syndrome/ME (BACME) www.bacme.info/BACME
AFME oh you mean self management promotion for CFS? It's such a shame that charity raised nearly £130 000 very quickly at Xmas to "do what they do" i.e. Pay lots of wages - whilst MEA didn't do any fundraiser (apparently to not compete with biobank) and Biobank raised just £11,000. So AFME have good finances to Carry on self management and its promotion
I feel so sorry for the people donating to Action for ME, imagining that they're helping.
Yes, but the quote did say "recovery from", not "management of".
I feel sorry for some of 'em. The ones who are too ill to learn about and engage with the politics, the newbies who don't know any better.
I gave up on AfME in disgust fairly early on. I know some people who have the energy to educate themselves about the politics, who are quick to complain about how they are treated, but still continue with their memberships.
I have raised the subject and gotten an " Oh, I'm not interested in all that! " response.
There are some amongst us who are happy to sit back and let people who are considerably more ill than them do all the heavy lifting.
ETA by amongst us I mean those diagnosed with ME or CFS. I'm not referring to fellow forumites.
I found the wages for AFME in their accounts and linked to it https://www.s4me.info/threads/action-for-me-agm-uk-is-live-streaming-now.1059/#post-18077
The CEO earned £94,282 for the last year reported. That seems to be the most important thing to let supporters know. It's up to them to make a judgment about whether that is acceptable or value for money.
Edited to add: The above paragraph is totally wrong.
WTF?! [edit - seems this was not the right figure, so my WTF was entirely justified!] [edit 2 - maybe it was closer to than we thought. WTF WTF?!]
Woah major brain fail there.
Ignore what I said in the earlier post. That was TOTAL staff costs. Sorry for the wrong figure.
One member of staff gets paid 60,000 + per year. As the trustees do not take a wage, that leaves one person who does.
Sorry I think that's wrong . If you look at this, it says staff total costs in wages , NI & pension contributions is near £419 000, that's a rise of near £25 000 on the previous year , whilst from what I can see research funding went down near 1/2.
Isn't the 90k figure just the CEO wage and trustee expenses? Don't they employ many other staff to get that £400k+ gross staff costs figure.
I can't think of anything their CEO does to justify that wage.
Don't be sorry I'm wrong all the time. I'm also not allowed to be an accountant.
I can't do this type of analysis anymore, too much cross referencing and jumping around to cope with.
The accounts are set out in a non-transparent way in my opinion, and are definitely not set out to accommodate cognitive problems.
Trustee expenses - (pg 30, 31)
The charity considers its key personnel to comprise the trustees and the Chief Executive Officer. The total employment benefits
including employer pension contributions of the key personnel were £94,282 (2016: £88,232).
The Trustees all give freely their time and expertise without any form of remuneration
or other benefit in cash or kind.
So, the Trustees receive no wages or other benefits in cash or kind. Only receive expenses. (So no National Insurance)
Emoluments for producing this information - £0.00
Maybe this made things as clear as mud, it's not my fault i'm now an idiot.
Separate names with a comma.