Page 3 of 4
January 2004
A DOSSIER OF CONCERNS
ABOUT THE CHARITY ACTION for ME (AfME)
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7: THE NON-EXISTENT AfME / WESTCARE MERGER
In September 2002, AfME announced that it had 'merged' with
Westcare. AfME issued press releases on this so-called
'merger'. This information was put up on the AfME website,
covered in its magazine and distributed to the media.
As late as November 2003, the Charity Commission of England
and Wales had no knowledge that any merger between AfME
and Westcare had taken place. In fact, the Charity Commission
denied any merger existed and issued the following statement:
From the Charity Commission, 26 November 2003:
"We are not currently in correspondence with the charities [AfME
and Westcare] about this issue [the merger]. We have
previously considered this issue and provided advice on the
basis of the information provided at that time. We are not aware
that the trustees have decided to take forward the proposal and
both charities remain on the Register. We have not been
contacted with any current proposals for a merger and therefore
cannot comment on these."
This runs utterly contrary to the copious AfME public statements
on this issue that have been in the public domain since
September 2002.
Just a few weeks ago, the Charity Commission was under the
impression and publicly stated that AfME and Westcare were
still operating as individual charities and no merger had taken
place whatsoever.
On the 15 January 2004, a journalist questioned the Charity
Commission again:
"Have the charities merged?"
The Commission answered: "The Commission understands that
in September 2002 Westcare transferred all the charity's assets
to Action for ME, in pursuance of the power of application
contained in the charity's Trust Deed. In so doing, Westcare
ceased to operate, and has recently supplied the Commission
with the documentation necessary to remove the charity from the
Register of Charities. In applying its funds by way of a transfer to
Action for ME, Westcare has ensured these funds continue to be
applied for the relief of persons suffering from ME and
associated illnesses. This process has not resulted in the
creation of a separate organisation: one charity has ceased to
operate, and one charity has continued unchanged."
If AfME has spun its members/subscribers (as well as the public
and the Charity Commission) a line over the non-existent
'merger', does this culture of spin pervade everything it does?
To summarise:
1. In September 2002, AfME announced that it had merged
with Westcare.
2. In November 2003, the Charity Commission stated that it
had no knowledge of any such merger having taken place and
that both AfME and Westcare were still operating as
independent entities according to its records and files.
3. Then in January 2004, sixteen months after the apparent
merger, the Charity Commission stated that it had been given to
understand that a transfer of assets had taken place and that
Westcare no longer operates as a separate entity and that an
application to remove Westcare from its books was in progress.
Members/subscribers of AfME should have been consulted
regarding pursuance of a 'merger' between AfME, a Charitable
Company and Westcare, a Charitable Trust. The form and
function of these two entities is entirely different.
Members/subscribers of AfME were not consulted.
This so called 'merger' changes the entire direction of AfME.
This 'merger' has made AfME a direct provider of services to
ME/CFS sufferers.
AfME is now selling such treatments as CBT/GET to the general
public at considerable expense. Treatments that have not only
shown themselves to be less than efficacious for sufferers, but in
many cases have caused considerable damage.
8: THE QUESTIONS
Questions have been raised regarding AfME's financial probity
because the form, function, strategic direction and workings of
AfME are entirely unclear.
Members/subscribers of AfME have been unable to enter into
free and frank dialogue with this charity since 1996. There are a
substantial number of important questions that need to be
answered by this charity:
1. Has AfME ever used funds on purposes for which they were
not donated?
2. Why has AfME not held an AGM that involved its
members /subscribers since 1996 - eight years?
3. By what mandate and remit does AfME represent its
members/subscribers to Government and the Health Service
given that it has not had an AGM since 1996?
4. What specific grants has AfME been given by
Government? What tasks has AfME agreed to perform
regarding these grants? List grants, define responsibilities and
action.
5. Why does AfME work closely with Professor Wessely and
his colleagues and the psychiatric lobby when this is clearly
contrary to the wishes of the ME/CFS community, and doubtless
of most AfME members/subscribers? Has AfME ever
canvassed the opinions of its members on the approach of the
'Wessely School'?
6. Precisely what relationship does AfME have with
Wessely/Chalder et al and the psychiatric lobby? Define.
7. Did conversations between the CEO of AfME and
Wessely/Chalder et al take place at the weekend prior to the
publication of the article dated 20 September 2003 published by
the British Medical Journal entitled "Epidemiology of chronic
fatigue syndrome and self reported myalgic encephalomyelitis in
5-15 year olds: cross sectional study" written by
Chalder/Wessley et al or not?
8. Why has AfME failed to respond to the Wessely article in
The Scotsman dated 5 January 2004?
9. Precisely what is the AfME role in its dealings with the
Department of Health regarding the bids for the £8.5m? Define.
10. Why did AfME refuse to list the eighty medical expressions
of interests regarding the £8.5m for view by its
members/subscribers and for the ME/CFS community?
11. Why did AfME not give full and frank disclosure of these
bids to Local ME/CFS Groups?
12. Does AfME subscribe to the fact that important subsets of
CFS are the neurological/physical illness(es) ME and PVFS as
defined by Ramsay and classified by the World Health
Organisation (ICD-10. G.93.3) that is used by the rest of the
world?
13. By what mandate does AfME speak for its
members/subscribers and the UK ME/CFS community
regarding its stance on the treatments psychosocial
management regimes it is currently recommending?
14. Precisely what is AfME's financial involvement in the
PACE/FINE trials? Define the AfME 'expenses' in regard to
these trials and what it is proposed that these will consist of?
15. Why has AfME not commented on the Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working
Case Definition, Diagnostic and Treatment Protocols produced
under the authority of the governmental "Health Canada" by an
Expert Medical Consensus Panel? The eleven international
ME/CFS expert physicians who made up the Panel, who have
between them diagnosed and/or treated more than 20,000
ME/CFS patients? This represents the most substantial
breakthrough on treatments for ME/CFS sufferers worldwide.
16. What is the difference between the terms
members/subscribers that AfME uses? Please explain and
legally define.
17. How are the AfME Trustees elected?
18. Please define the AfME categories of
membership/subscription e.g. corporate, group, individual and
so on. Please list numbers in each category thus enabling
members/subscribers to see precisely how many
members/subscribers AfME has.
19. List names of AfME Trustees/Affiliates/Officers who also
run Local ME Groups.
20. Does AfME formally speak for Local ME Groups in any
way? And if so, by what means?
21. Precisely what affiliation does AfME have with Local ME
Groups? How is this conducted on a constitutional and
managerial basis? How is this relationship regulated and
maintained?
