From Kevin Short
8 December 2006


A Statement: Points of Information re the GSRME/Report.

To whom it may concern.

I can confirm that I did not break the embargo on releasing the GSRME report itself and gave it to only the two people (one of whom was Professor Malcolm Hooper) for whom I had been given permission by Dr Ian Gibson's office. I was NOT asked by Dr Gibson or his assistant to forward the pre-published report to anyone but was told that I could pass it to two specified individuals that I had asked to receive it "if you [I] wish". However, without properly thinking and without malice of forethought I did make some general comment on the report without going into specific detail: in my restricted not-for-reposting message on several closed-membership ME patient internet discussion lists on November 25th 2006. The text of this 25th November message is reproduced in full below.

I have not had the opportunity to speak with Dr Gibson since the report was released. I believe that IF Dr Gibson wrongly thinks that I might have broken the GSRME embargo by releasing the report itself, as has been suggested by a third party, it was an honest mistaken assumption on his part and that there was no intention to mislead whatsoever. I do however wholeheartedly apologise for mistakenly breaking the embargo in terms of passing general comment on the unpublished report: In my woolly ME diseased brain I somehow thought that as long as I did not comment upon specifics in the report that it would be alright to give my general first impressions. I can see now that I should not have done so and, as said, apologise to Dr Gibson, his staff and the GSRME unreservedly - and to anyone else who may feel aggrieved. I have extremely high regard for Dr Gibson, I believe that he is one of the best MPs in parliament and I am more convinced now than I ever was that he is an honourable man endeavouring beyond the call of duty to assist ME patients. People who badger his office for instant responses and demand that everything be done how and when they would like simply refuse to acknowledge that he is an extremely busy man with limited administrative resources at his disposal. Moreover, and very importantly, I am concerned that such a discourteous and impatient approach could seriously damage the cause of ME patients.

I believe Dr Gibson gave the GSRME report to the press in advance simply so that they would be able to comment in their health bulletins on Monday 27th of November if they chose to. I do not for one moment believe he 'seeded' the report to friendly journalists to solicit favourable biased coverage - indeed, I would suggest that if any national press bias operated upon the report it was pro-psychosocial bias and did so by refusing to cover it at all! Concerning theories that Dr Gibson deliberately seeded the report to me and two others via me in order to solicit favourable coverage: I have no doubt that this is untrue because his research assistant only gave the report to me after my repeated requests and I became aware, after I had commented, that Dr Gibson was clearly unhappy about any comment being made prior to the official release date. As said, he did NOT ask me to give the report to anyone and I am quite sure that Dr Gibson did not ask or expect anyone in the ME community to produce an early synopsis of his report, favourable or unfavourable. In fact he would have had no way of knowing whether my response or anyone else's would have been favourable or otherwise. For all he knew we could have decided to come out against it.

I am still firmly of the opinion that, as I said on November 26th: There is much in the report to be very pleased with and it is, without doubt, one of the most important and generally positive things to come out of the UK Parliament on ME and CFS. 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.

I would be the first to admit that I am not perfect and that I make many mistakes - usually as a result of cognitive disability arising from my enteroviral-caused ME - but I do try to focus on productive ME campaigning and try to do what I think is best for those who have genuine ME or whose family members have genuine ME. I am rightly proud of my role in with the Gibson Group and much else I have attempted to do in ME campaigning. I do not have the energy however to constantly respond to my detractors on the internet. Unlike some of them, I do have ME. I also have to pace and prefer to use what little spare energy I have on campaigning: not regular cyber clarification. I am sorry if some do not like this but it is simply a case of ME-dictated opportunity-cost for me. Absence of a response to detractors therefore does NOT mean that the detractors are necessarily justified in their claims.

Finally, I have recently been overwhelmed with kind comments and gestures of support from members of the ME community and I appreciate this very very deeply indeed. I have no doubt whatsoever that the overwhelming majority of informed members of the genuine ME community are, on balance, guardedly pleased with the Gibson report - and the realisation that we now have an opportunity to move things further forward with Dr Gibson/the GSRME - NOT because they have read any synopsis, but because they have read the report itself and because they possess sound, balanced judgement and wisdom: understanding that it is unreal to expect a perfect report from any committee in such circumstances and that the report could be part of an important forward process: this is REAL realpolitik. Dr Gibson and the GSRME deserve a chance to show that they mean, as they state, to "make the patient voice heard". Absolutely nobody that I know of - including the GSRME itself and members of the ME community who produced early overall positive comment upon the report - is saying we should give them this chance uncritically: to do so would, by implication, not be having a patient voice! I, and others, are simply asking for balanced, constructive and courteous criticism and engagement.

Yours faithfully,

Kevin Short.
Norfolk, UK.
08 December 2006.



Cc: Dr Ian Gibson MP & Sarah Vero (Research Assistant to Dr Gibson).













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.