Tuesday, May 10, 2011

The latest example of corporate dyslexia within AfME (Action for M.E.)

Permission to repost

Heather Walker, Communications Manager at Action for M.E. has issued the following request in response to Margaret Williams’ recent article, "Action for ME and its latest links to the Insurance Industry" http://www.meactionuk.org.uk/AfME-and-the-Insurance-Industry.htm :

"Action for M.E.'s chairman is the father of a daughter with M.E. Our connection with Allen & Overy LLP is through Richard Evans, a partner in the London office, whose wife has had M.E. Richard has been a trustee for many years. Neither is involved in the charity to 'strengthen its links with the insurance industry' as has been suggested. Professor Michael Sharpe is not a medical advisor for Action for M.E.

If you have reposted the misleading and inaccurate text below, please forward this correction.

Thank you.

Heather Walker
Action for M.E."

In response to Heather Walker’s request that what she referred to as the “grossly misleading” article be corrected, Margaret Williams thinks it would be helpful if Heather would please answer the following questions:

1. will she confirm or deny if, at any time in the past, Michael Sharpe has ever been an ad hoc medical advisor to the charity (the article did not say that he was currently a medical advisor)

2. will she confirm or deny that Alan Cook CBE is Chairman of Irish Life & Permanent Group Holdings plc

3. will she confirm or deny that Dr Deidre Gleeson, an Occupational Health doctor, examines and writes reports on people with ME/CFS for Irish Life and that she recommends that people with ME/CFS are fit to return to work and that benefits should not be paid to them

4. will she confirm or deny that it is a self-evident conflict of interest for AfME to have as its Chairman a person who is also Chairman of an insurance company that appears to adopt a hostile position towards people with ME/CFS whom the charity is required to support

5. will she confirm or deny that Allen & Overy's website states what was quoted in the article about the firm's expertise in insurance law

6. will she confirm or deny that the quotation from the Annals of Internal Medicine 1994: 121:12:953-959 was accurate and that Michael Sharpe was one of the authors

7. will she confirm or deny that Margaret Williams’ article made no mention of Dr Esther Crawley

If her article was incorrect and the above points are publicly denied by AfME, then of course the article will be amended accordingly.

It is noted that Horace Reid posted the following on Local ME: “On 8th February 2010 AfME announced that Alan Cook CBE was the charity's new Chairman. Alan Cook is Chairman of the insurance group that includes Irish Life & Permanent Group Holdings plc.

In a number of cases Irish Life is currently denying PHI benefit to ME patients on the spurious grounds that they cannot provide "objective evidence" of illness.

In the Spring 2011 edition of "Interaction" (AfME's magazine) they ran an article denouncing insurers who engage in sharp practice with PHI clients who have ME.

These contradictions are the latest example of corporate dyslexia within AfME”.

1 comment:

Anonymous said...

This was on the AfME website; they do not list the research they have
funded and I'm still trying to find one single example of biomedical
research (apart from the proposed tissue storage, and it seems to me it
will be worse than useless unless the Canadian guidelines for M.E. are

"Collaboration with the PACE study

PACE RESEARCH STUDY – a statement July 2004

Various comments have been made by individuals and other organisations
about our support for the PACE study. We are pleased to explain our

Action for M.E. has found from repeated surveys of its membership that
Pacing has been the approach that people have found of most benefit in
managing the illness and helping toward recovery.

The Chief Medical Officer’s Working Group listened to the Action for
M.E. surveys and the contributions of the Group’s Members and for the
first time acknowledged the usefulness of Pacing – along with other
rehabilitation approaches used in the NHS.

But the Group acknowledged there was much that was still unknown about
the effectiveness of all the approaches and recommended a research
trial comparing them.

"Because of the shortage of good research evidence of the effectiveness
of pacing, there is an urgent need for randomised controlled trials of
pacing therapy, particularly in early illness (for example, in
comparison with rehabilitation therapies such as cognitive behavioural
therapy and/or graded exercise, and other forms of support such as

The Report including this key finding was accepted by all the members of the M.E. Alliance

Subsequently Action for M.E. undertook further surveys that showed members do want research into and more information on Pacing.

Accordingly, and having checked that a study would not divert funds
from our members overall priorities to find the cause and a cure for
M.E., we agreed to support a trial comparing Pacing with other

It is not true – and never has been – that the funding of PACE has diverted money away from other M.E. research.

Chris Clark

(Then Chief Executive, Action for M.E.)"


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