29 October 2009
Action for M.E. maintains a Facebook site at:
http://www.facebook.com/actionforme
In the past few weeks, questions around Action for M.E.'s governance, the
way in which it relates to its membership, its policies and operation and
its relationship with government have been raised by various users on its
Facebook "Wall".
Action for M.E. has chosen to respond to these questions, not on the Wall,
itself, but by issuing a set of responses in a PDF document.
A second, updated, set of responses has been issued by Action for M.E.,
today, and it's interesting to see how the organisation has fielded these
questions and concerns. It's not clear whether these responses have been
compiled by Action for M.E.'s new Policy Manager or by another member of
staff as the document is unsigned.
Action for M.E. is obviously becoming rather discomforted that its Facebook
site is being used by some as a vehicle for raising political issues but
you cannot take the politics out of ME.
Those of us who were members, in 2003, of the joint charities' message
board "MEssage-UK" will recall how rapidly first Action for M.E. then AYME
pulled out of this venture when faced with too many awkward questions; how
the message board was then set for pre-moderation by the ME Association;
how the moderator, Tony Britton, vetoed posts of a "political nature"
without ever setting out how he was going to define what came under the
heading of "political" and what did not; how the archives were sifted
through for "contentious" messages by senior ME Association staff and
quietly excised without the authors being informed; how the board was
closed down suddenly just days before the critical December 03 AGM in which
Dr Shepherd was standing as a candidate in the Trustee elections...
When will our patient organisations learn that if they are going to place
themselves on public platforms they first need to develop policies for the
fielding of questions.
This latest set of responses can downloaded in PDF format here:
Answers to questions raised on the Action for M.E. facebook page, October
2009. Updated.
http://tinyurl.com/ongoingFB-responses291009
that is:
http://www.afme.org.uk/res/img/resources/ONGOING%20FB%20Q%20and%20A%20document.%2029.10.09.pdf
One of the responses included is to a question raised (not by me) around
the CISSD Project, for which Action for M.E. had acted as principal
administrators between 2003 and 2007.
In its response to this question, on Page 23:
Question: "What was your involvement in the CISSD project Conceptual Issues
in Somatoform and Similar Disorders for which you received a grant of 67k
and why was this project kept so secretive from your members? Only
information about it was released when freedom of information act requests
were made that pushed you in to a corner where you had to confirm you were
involved in it. Was this CISSD project set up with the purpose as suggested
by other sources with the intent to look at changing the ME/CFS ICD-10
coding to that of a Somatoform disorder?"
Action for M.E prefaces its response with "As a charity, Action for M.E. is
not obliged to answer questions under the Freedom of Information Act but
provides information of its free will, as resources allow."
I should like to clarify that the Freedom of Information requests submitted
by me had been submitted to the Institute of Psychiatry.
Information resulting out of these requests under the FOIA is available
from ME agenda WordPress site.
One of the requests had been for a copy of the December 2007 "CISSD Final
Report" from Dr Richard Sykes to Action for M.E. I had suggested to the
Institute of Psychiatry's Legal Compliance Office that the report ought to
be provided with a erratum note, by Dr Sykes, addressing a number of errors
he had made in the document which had come to light in June 09, when an
unauthorised copy of the text had been placed in the public domain.
Unfortunately, what the Institute of Psychiatry were provided with by Dr
Sykes, in order to fulfil the request, was evidently a earlier draft of the
December 2007 text. No erratum note was provided, either.
It has not proved possible to obtain what I had requested via the IoP.
However, as part of its response to the Facebook question, Action for M.E.
has now elected to publish two files. The first is a copy of the December
2007 CISSD Final Report to Action for M.E., the second, a copy of the
"Co-ordinator's Report" together with a covering letter and summary.
Halleluiah!
Action for M.E. has finally put these documents in the public domain.
They can be downloaded here and also from my site:
http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf
http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%202.pdf
In August, Action for M.E. had published an article titled "Classification
conundrum" on pages 16 and 17 of Issue 69 of its membership magazine,
"InterAction".
You can read a copy of the article here, in an ME agenda posting dated 25
August 2009:
"Action for M.E. stuffs the elephant back into the cupboard"
http://wp.me/p5foE-1TO
Note that although the Project had been initiated by Dr Richard Sykes, Dr
Sykes does not appear to have contributed to this article, which is
basically an apologia piece authored by Dr Derek Pheby.
In fact, Dr Sykes and his role as instigator and co-ordinator of the
Project is not mentioned in the article at all. Nor is the Project's source
of funding - the charitable Trust run by Dr Sykes' brother, Sir Hugh Sykes,
a non-executive director of A4e, the largest European provider of Welfare
to Work programmes.
In August, I called publicly on Action for M.E. to publish a copy of the
December 2007 "CISSD Final report" on its website and to preface it with an
erratum note addressing the errors of coding within "Appendix B" of the
document and also addressing Dr Sykes' misconception that "Chronic fatigue
syndrome" does not appear in the International Statistical Classification
of Diseases and Related Health Problems: 10th Revision Version for 2006,
Volume 3, the Alphabetical Index (ICD-10 Volume 3).
(See:
http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3 )
No erratum note has been published with these documents, today, so please
be aware that where Dr Sykes has written "G33.3" and "G33.4" on Pages 12
and 13 of document:
http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf
this should have read "G93.3" and "G93.4".
Why has Action for M.E. published these documents without negotiating with
Dr Sykes for an Erratum?
Suzy Chapman
_____________________
http://meagenda.wordpress.com
http://twitter.com/MEagenda
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