Kevin Short


URGENT - Re the Gibson/GSRME Report 

To the ME Community.

November 25th 2006.


Dear all,

I received the report early yesterday evening from Dr Gibson on the strict basis
that I was embargoed from releasing it until 10pm on Sunday 26th - with the
exception that I could forward a copy to Professor Malcolm Hooper and one other
named person. I have abided by this instruction as I felt it right and proper
and it was the best course of action all things considered. However, copies of
the embargoed report were sent to many journalists and I believe it is possible
that some of them may not have honoured the embargo and copies have been
distributed further. The report will be officially published on Monday and
launched with a press release.


I cannot comment on the detail of the report as yet and, frankly, feel I need
most of next week in bed to placate my illness. I will however state the
following:

1.. There are things in the report that I am emphatically and justifiably not
happy with and it needs honest, factual, critical and courteous comment - and
must be responded to comprehensively and in detail by the ME community.


2.. There is much in the report to be very pleased with and is without doubt
one of the most important and generally positive things to come out of the UK
Parliament on ME and CFS.


3.. Apart from one member of the group, who I believe has demonstrated a pro
Wessely School bias and has not had an open mind, we appear to have a group of
parliamentarians who are genuinely trying to help us and have stated a
commitment to that end.


4.. We can further work on and with those members who are listening to us and
hold them to their commitment to make the patients' voice heard.


5.. Although the Establishment will do its best to ignore at least some of the
Group's recommendations and the group is not as powerful as a parliamentary
select committee, members do have a substantial voice in parliament/the media
that can be worked with to further the cause of good science and justice in ME.


6.. Most of the disappointing aspects of the report can, I believe, be put
down to: a) the 'one member' mentioned in point 3 above; b) the devil is in the
detail of all this and group members are very busy people and found it difficult
to take in the sheer totality of information; c) the group had very little
administrative and financial resources at its disposal - amongst other things
this meant they were limited in getting crucial overseas witnesses to attend
hearings; d) the committee were rushed for time in the end because they felt the
need to get the finished report to the NICE before the end of their consultation
period; e) we live in a UK ME disinformation culture dominated by the Wessely
School that members had to overcome to start with.


7.. Whilst, as said in point 1 above, it is right and proper that we respond
critically to the report and point out evidence as to why we think aspects of it
should be different, PLEASE, PLEASE, PLEASE can we do so constructively,
courteously and without going ballistic or indulging in unjustified personal
attacks upon members who are genuinely trying to help us. I think that we may
now have an excellent opportunity to work with these parliamentarians, further
educate them and benefit from their assistance. I do not think that we are
likely to get as good a chance as this to influence parliament/the media for
quite some time and that we should use it intelligently and constructively.
Anyone who indulges in over-the-top gratuitous blanket condemnation of this
report/group will, in my view be doing a great disservice to the ME community at
a time when we are in great peril and need all the help we can get.


From the bottom of my heart, thanks to all those in the ME community who have
worked really hard on all of this and, most especially, thanks to Professor
Malcolm Hooper and Margaret Williams. I shall, in due course, be fully
communicating my comments and sincere gratitude to Dr Gibson and his colleagues
who have genuinely endeavoured to help us.



Best wishes,

Kev Short.



Cc: Dr Ian Gibson MP, Sarah Vero.