Message no. 1595 THE ONE CLICK GROUP
http://health.groups.yahoo.com/group/THEONECLICKPROTEST/

Statement from Dr. Charles Shepherd, MEA Trustee
27 January 2004


The ME Association - A New Start

Firstly, we hope that members will appreciate that the new Board had
a considerable number of urgent matters to deal with at our first
proper meeting. This inevitably led to us concentrating on finance
(which took up all of the morning session), staff and routine
administrative matters - rather than looking at issues such as
detailed policy making and a future research agenda.

Secondly, the purpose of this statement is to provide a brief summary
of the conclusions and decisions that were made regarding those key
items under discussion.

Thirdly, this Association regards the promotion of researches into
the PHYSICAL causes of ME as the paramount object of its existence
and intends to take an active part in lobbying Parliament and
whomsoever in order to achieve its objective.

We want to be open and honest with the membership about the
considerable difficulties that The MEA now faces. But at the same
time it is important to realise that both trustees and staff have a
great deal of enthusiasm and optimism to take this charity forward
and make it succeed.

FINANCIAL SITUATION

The financial health of The MEA remains a matter of very serious
concern. However, the Board concluded that winding-up or amalgamating
with another ME/CFS charity was not an option in the current
financial situation. The Board have therefore unanimously decided
that everything should be done to keep The MEA going. In the short
term this will mean reducing expenditure to an absolute minimum and
at the same time attempting to raise additional funds on top of those
already provided by membership fees and donations - as the latter are
not sufficient to keep a charity of this size viable. Having already
asked MEA members to contribute to an appeal in 2003, we did not
believe it was right to do so again. Instead, we have asked Tony
Britton to examine ways in which additional funding from charitable
trusts, companies etc might be forthcoming. Action on this initiative
is due to start very shortly.


HEAD OFFICE STAFF

As a result of the need to keep a tight control over staffing costs -
a major part of our expenditure - we have decided that The MEA can
only afford to employ two full time staff at Head Office: Gill Saving
(office manager) and Georgina Peschiera (administrative assistant).
Tony Britton will continue to work on a part-time basis dealing with
the magazines, press, and his new role as Project Officer. Several
other aspects of the workload, which would have been carried out by
the Chief Executive in the past, are now being done by members of the
Board in a voluntary capacity. Although these demands are not
sustainable in the long run, we are all willing to accept them for
the forseeable future.


HEAD OFFICE PREMISES

Another potential problem that we may shortly face is the fact that
the lease on our Head Office premises in Buckingham is due to expire
in mid March. So we may therefore have to be looking for alternative
office premises in the Buckingham area fairly shortly. As the Board
is very keen to retain the services of our two remaining members of
staff, we are not therefore looking at the possibility of relocating
to another part of the country.


SERVICES

Despite cut-backs in expenditure, the Board will endeavour to
maintain the existing levels of service. In particular the ME Connect
telephone and email service will continue to operate as normal, and
the next edition of the Research and Scientific Bulletin will appear
in March. However, with the closure of the Glasgow office, and no
more funding coming from the Scottish Executive grant, we have
decided to abandon negotiations regarding the possibility that a
former MEA trustee might be employed to provide a peripatetic service
in Scotland. The Board fully accepts that there is a need to start
producing a range of literature suitable for both members and health
professionals, and this is something we intend to address in due
course. We are also going to carry out a review of the content and
design of The MEA website.


CAMPAIGNING

The Board agreed that The MEA must, once again, be seen to be a
campaigning charity - especially in the areas of benefits, research
and service provision. One of our first actions will therefore be to
organise a petition calling for more government-funded research into
the physical causes of the illness. This will be presented to the
government at No. 10 Downing Street as part of the Whitehall
demonstration on May 12th.


RESEARCH

With all outstanding payments to scientists carrying out MEA-funded
research now complete, we still have several thousand pounds (the
precise figure is uncertain) to invest in future research. Further
consideration as to how we should develop our research agenda will be
a priority for a future meeting.


POLICY

As there were so many issues to deal with, there was only time for a
brief discussion on the need to redefine and/or clarify key aspects
of MEA policy. But the Board does want to make it clear at this stage
that We believe this is a genuine PHYSICAL illness.
There is a scandalous lack of government-funded research into the
physical causation. We strongly disagree with the view of the
Medical Research Council that research into possible physical causes
should not warrant high priority, and we will take an active part in
lobbying Parliament and whomsoever in order to change this policy.
Despite the recent funding of £8.5 million to develop ME/CFS services
in England, the lack of suitable facilities for specialist hospital
referral in certain parts of the UK, Wales in particular, remains
indefensible. We will vigorously represent the interests of people
with ME when dealing with The Medical Research Council, Department of
Health, Department of Work and Pensions, or any other organisation,
if we believe that policies or actions being taken by them are not in
the best interests of people with ME/CFS.

NEW TRUSTEES

There is an urgent need to co-opt onto the Board a further trustee in
order to bring our number up to the minimum consitutional requirement
of 7. We would also like to have a Board which has a full membership
of 12 trustees consisting of people with ME, carers, and those who
can offer their professional expertise to the charity. If anyone is
interested in joining the Board, please send us some brief details
about yourself and why you would like to become an MEA trustee.
Applications will then be reviewed at our next meeting at the
beginning of March.

To members without website access, but who nevertheless are made
aware of this statement, the Board wish to apologise in advance for
using a medium which is not available to all. The Board were faced
with the desire to issue a statement whilst at the same time trying
to avoid additional mailing costs. The statement will appear in full
in the March edition of the magazine.

Chairman and Trustees of the Board of The ME Association.