Action for ME's administration and how that affects its views about treatment

I believe in 2015 (and I expect since) SC pay was between 70-80 thousand pounds.

I get this figure from the end of year 2015 trustee report and accounts under (pg 28) Staff Costs -- subheading number of employees whose emoluments amount for the purpose of taxation to over 60 thousand pounds - 1
and then the range of that employees pay.

https://www.actionforme.org.uk/uploads/pdfs/trustee-report-and-accounts-2014-2015.pdf

But as others have stated it's more interesting to know from where the bread gets buttered.

ETA: found the 2016-2017 report
https://www.actionforme.org.uk/uploads/2016-2017-trustee-report-and-accounts.pdf

Pg 32 staff salaries the above 60,000 a yr now has no actual salary range.

 

For those who are interested in Gregor Purdie as medical Adviser to AfME here is something he authored in 2010, for Scotland.

http://www.scot.nhs.uk//wp-content/uploads/2015/06/GoodPracticeStatement.pdf

" Graded exercise therapy (GET) is intended to redress decline in physical fitness due to inactivity.18,19 GET has proved to be a particularly controversial form of treatment – which many patients have concerns about and some patients have indicated that GET has worsened their symptoms (see below). GET makes use of an exercise programme involving a gradual increase in exercise/activity. It must be delivered by a suitably trained GET therapist with experience in ME‐CFS, ideally on a one‐to‐one basis. Where fibromyalgia is also present, supervised aerobic exercise therapy may help physical capacity and relieve pain symptoms. 20 Some patients with ME‐CFS report that exercise programmes have been applied inflexibly at times, without consideration of individual circumstances and goals, sometimes with significant adverse responses. It is essential that agreement and negotiation are at the very centre of any GET programme."

"• Cognitive behavioural therapy (CBT) can be used, as in other chronic physical medical conditions, as a tool to aid people develop better ways of coping with symptoms such as fatigue, pain and sleep disturbance.18,21 CBT may be of value to patients when their symptoms have led to a psychological response that has compounded their problems."

Apologies if this has already been posted, just came across it on a FB group.

 

Thank you @MEMarge

So it seems he is sympathetic to the needs of ME patients and recognises the problems with GET. However he doesn't quite speak out strongly against it either. Mind you that quote is from 2010, so maybe he has had a chance to ponder further on the problems. ??

 

I, like many people, saw the drafts of the document. Dr Purdie is a good guy, he encouraged input from PWME and was very open to comments and informed discussion. He had the patients best interests at heart. My memory is the final document was considerably altered from the draft one, due to input from the BPS brigade led I think by Dr Clare Gerada, Professor Wessely's wife.

 

I have been rereading that post above by @Daisymay setting out grants made to Afme. The concept which seems best to describe the process is money laundering.

 

the Masonic Charitable Foundation grant for £59,610 22.06.2020

https://mcf.org.uk/charity-grant/action-for-m-e/

 

Does anyone know what happened to this? I remember the observatory being discussed a lot, did it become Decode?
Establish CFS/ME Observatory for epidemiological & social research
£503,028 on 28 Feb 2006 in City of Bristol
Nothing on a search of AFME’s website (lots of information seems to have been deleted from their website)

 

It led to studies like this:
Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care
https://pubmed.ncbi.nlm.nih.gov/21794183/

 

It's a flawed study because it didn't use the stricter criteria (ICC). Even so the prevalence it found was half the usual 250,000 that is quoted by charities and MPs.

 

The ICC weren’t created/published when it was being done.

 

"The Observatory is a collaboration between Action for M.E., the University of East Anglia, Hull-York-Medical School and the London School of Hygiene and Tropical Medicine."

from 2009

see post
https://www.s4me.info/threads/legal...ted-1st-october-2021.22626/page-3#post-378503