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

The Medical Advisor prior to Dr Purdie was Dr Alastair Miller but he didn't join till 2010, a year before PACE was published.
Some information about him below including comments are interesting.

http://www.merseysideskeptics.org.uk/2009/10/skeptics-in-the-pub-november-19th-alastair-miller/

ETA: Comments 1-8 are particularly interesting in that they were made before the Pace trial was released, and replicate the criticisms now 8-10 years on. We don't seem to have moved an inch. Dr Miller doesn't seem to have been popular with many patients. I wish I had known this in 2008/9 when I joined AfME. The comments are worth reading. I am very foggy so hope this is ok.

 

Just had a dig through my pile of Interaction magazines; Prof Tony Pinching.

 

Have a recollection of past discussions over the road. Didn't Prof Pinching work in the West Country, and wasn't he " a good guy"? Really am foggy so hope I've remembered this correctly.

 

Yes. That fits with my recollection; perhaps Truro.

 

Gregor Purdie and Julian Newton however don't seem of the BPS bent, so surely AfME must be getting better advice now?

 

Someone who was a patient of Prof. Pinching (from the South West) said he was very good, but that he seemed to say what was needed /toe the BPS line to some extent in public.

This patient is very politically aware and was a patient for quite some time, possibly until he retired.

 

I think percentage of yearly funds spent on administrative costs is more interesting than salaries.

At least that’s one of the key things to consider if what you are interested in is effective altruism.

As an example, Foundation Against Malaria (if I remember the name correctly) is considered a very effective way to give because only ~ 1% of their funds are used for the running of the organization (AND because they can show that protection against Malaria is cheap but will actually help to raise the nation’s GNP by significant amounts, thus boosting the entire economy).

For CFS/ME an effective organization might be one that spent more on administration because we need more people to be full time advocates, but that could demonstrate participation in policy making committees and positive end results. Or something.

The question of who decides what agenda to push is of course something else entirely.

 

I still think their salaries are less interesting than who pays them.

 

He was the immunologist attached to the ME/CFS specialist service based in Truro. And patron of the local support group I was a trustee of for a while until he retired in 2010 (?).

I always describe my visit meeting with him as a patient as a real turning point. He validated my M.E. and 'slapped me about a bit' - forced me to see where my own management was going so badly wrong. He was also the first medic to prescribe me something that actually relieved me of the dizziness and nausea I'd been suffering from until then.

Only took me 10 years of having this diagnosis and virtually no help for me to arrive in Cornwall and be referred. From then on it was like I'd been given permission to 'downsize' and accept. I learned to pace, and to stop beating myself up about things beyond my control. Life didn't become easier - but it did become less stressful.

 

Historical information, but very improtant, in February 2003 AfME was awarded a very substantial grant of £187,000 over three years, from the UK Department of Health. AYME (now amalgamated with AfME )had received a grant for £110,000 over three years in 2002. The evidence is here:

https://publications.parliament.uk/pa/ld200304/ldhansrd/vo040211/text/40211w03.htm

or https://bit.ly/2HnaXap

Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Government Support for Charities, The Countess of Mar asked Her Majesty's Government:

How much funding has been awarded by the Department of Health under Section 64 of the Health Services and Public Health Act 1968 to the United Kingdom charity Action for ME since April 2003; for what purpose the award was made; and what were the terms under which it was made; and[HL1179]

Whether any funding has been awarded by the Department of Health under Section 64 of the Health Services and Public Health Act 1968 to any charities representing those with myalgic encephalomyelitis or chronic fatigue syndrome other than Action for ME since April 2003; if so, how much was awarded; to which charities; and for which purpose.[HL1180]

11 Feb 2004 : Column WA163

Lord Warner: In February 2003, Action for Myalgic Encephalomyelitis (ME) was awarded a grant of £187,000 over a three-year period to support its chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) clinical network project. The project is intended to help all those in the field to access knowledge and share best practice on meeting the needs of patients.

The Association for Youth with ME was awarded a grant in 2002 of £110,000 over a three-year period in respect of its positive living project. This involves developing a training and information programme to empower children and young people via skills workshops to voice their experience, knowledge and needs of living with CFS/ME.

All voluntary organisations awarded Section 64 grants provide regular progress reports showing how they meet the objectives laid down by the grant conditions.
..................................

So what is a section 64 grant?

http://webarchive.nationalarchives....Financeandplanning/Section64grants/DH_4032519

or https://bit.ly/2GImhwr

What is the Section 64 Scheme?

8 February 2007

The Secretary of State for Health, through the Section 64 General Scheme of Grants (S64 of the Health Services and Public Health Act 1968), has power to make grants to voluntary organizations in England whose activities support the Department of Health's policy priorities. Section 64 grants represent the greatest single source of financial support that the Department provides to the voluntary sector.

The grants are discretionary and terms and conditions agreed by Ministers and HM Treasury apply.

Competition for the available funds is always very strong, and priority is given to applications with innovative proposals of national significance that will complement statutory services and so help secure provision of high quality health and social care and promote the nation's health.

The Department of Health values its partnership with the voluntary and community sector across the whole of health and social care. Making effective use of Section 64 and other powers at national and local level is central to this relationship.”
........................

It is interesting to read that these grants are difficult to get, yet it was AfME, the only adult ME charity that supported PACE, that was successful in receiving this very substantial section 64 grant.

AfME, in the spirit of openness, can you please share with us what were the terms under which the grant was made and which of your activities specifically supported the DoH's policy priorities?

Was it your support of the PACE trial ?

Your support of the ME/CFS centres of excellence ?

Did you get any further section 64 grants after this date, or indeed from the Third Sector Investment Programme which superseded section 64 grants?

Thank you, I look forward to your response.

 

The following information from "Magical Medicine" shows just how important, indeed pivotal, AfME's support was for PACE:

http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf

The involvement of the charity Action for ME in the PACE Trial, p234 - 235

"Of note is the fact that the PACE trial was designed in collaboration with the charity Action for ME (AfME).

The PACE Trial Identifier states: “Mr Chris Clark, CEO of AfME, will be a member of the TMC (Trial Management Committee) and help with external relations”. (Mr Clark left AfME in 2006 and was replaced by Sir Peter Spencer).

The Identifier also states: “Compliance with both the treatments and the study will be maximised by the collaboration and support of AfME”. “Compliance” and “collaboration” are strong words and they may indicate just how influential was the involvement of AfME in the PACE Trial.

In section 6 (“Application History”) the Trial Identifier states at 6.1: “A similar application of a much smaller two arm trial (FATIMA; Grant number G9825745) was submitted in full to the MRC in 1999, rated Alpha B, but not funded.

“The outline proposal of this study (G010039) was approved for a full proposal in October 2001. The major innovations in this application include close collaboration with Action for ME”.

This statement by Peter White indicates that the PACE Trial might not have been funded without the “collaboration” of Action for ME.

By letter dated 6th December 2004 to the West Midlands MREC, Peter White confirmed the involvement of AfME in the PACE Trial Manuals (see Section 4 below):

“The treatment manuals have been developed with the active involvement of the main patient charity, Action for M.E."

....................

And Professors Sharpe and Wesselys' involvement with AfME, MM p236:

http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf

"It is not only Professor Pinching who is closely involved with Action for ME: Professor Michael Sharpe is (or was) an ad hoc Medical Advisor to the charity, and on 22nd January 2004 in a debate on ME/CFS in the House of Lords, the Health Minister, Lord Warner, confirmed that Professor Wessely had worked closely with Action for ME, to which the Countess of Mar responded:

“Such is that man’s influence that when faced with ME patients, clinicians now collude with each other to ensure that patients receive no investigation, support, treatment, benefits or care – in fact, nothing at all. Patients are effectively abandoned. They have been badly let down by Action for ME. It is now supporting the Wessely ‘management’ programme and is, I see, to be actively involved in the development of the new treatment centres” (Hansard: Lords: 22nd January 2004:656:27:1180)."

 

Revisionist historians might reflect upon the little local difficulty experienced by the MEA which I think was at about the same time. It would have helped to render them wholly ineffective-as almost happened.

 

? Remind me?

 

One thing was betahistine hydrochloride for the nausea and dizziness. I think he'd prescribed it for others with M.E. as well, although my original viral infection seemed to be hitting my balance etc. through some nerve mechanism in my ears. Labyrinthitis was an earlier diagnosis pre and post M.E. diagnosis. Another drug was Baclofen a muscle relaxant. I still take both to this day. Tried coming off them but noticeable worsening of symptoms occurs.

 

AfME could be referred to the Charity Commission for acting in contravention to its charitable objects? Refusing to campaign and advise against treatments that are harmful to PwME.

 

I pulled up American Red Cross salaries.

https://www.indeed.com/cmp/American-Red-Cross/salaries

https://www.glassdoor.com/Salary/American-Red-Cross-Salaries-E2707.htm

https://www.payscale.com/research/US/Employer=American_Red_Cross/Salary

https://www.reno.com/story/news/local/2012/06/04/does-red-cross-ceo-get-exorbitant-pay/28936535/

Several Charities
https://www.snopes.com/fact-check/executive-salaries-charities/

Overall, I believe pay ranges are listed for most positions for any charity and for CEO, President, etc., they will release salaries. What A4ME and all ME/CFS charitable/research organizations should release is the CEO salary, pay ranges for all positions, whether postions are full time/part time, and salary expenses as a lump sum for the organization. Even if a communications officer reaches out, they are not obliged to release their salary but on A4ME website the pay range of that position should be listed, IMO.

If they are not forthcoming I believe a FOI request can be filed.

 

Sorry for the delay. I often lose track of alerts.

If my memory is correct, and it may not be, it was at about this time that the MEA, depending on one's point of view, underwent either a hostile takeover or a democratic expression of members right of control. This saw CS removed for a period until a counterrevolution daw him reinstated and the constitution greatly changed.

I never did understand what went on. I put it down as just another of those odd events.

 

Thanks @ chrisb. Now you mention that I dimly remember a ruckus. Done & dusted, I guess.