Responses from ME patient organisations on their positions on the RSM’s regional conference on “CFS”
In the weeks before the RSM’s controversial London “CFS” conference, four of our leading ME patient organisations had issued position statements in response to a statement published by Action for ME (AfME) in defence of Sir Peter Spencer’s participation in this event.
Yesterday, I approached The ME Association, The Young ME Sufferers Trust, The 25% ME Group and Invest in ME to enquire whether these organisations have issued or intend to issue position statements on the RSM’s CFS regional conference taking place in Bristol today or have made any arrangements for literature to be handed out to conference attendees. A week ago, I also contacted the Bristol ME Support Group for their position on this conference and to enquire what action they might be taking.
Response from Simon Lawrence, Chair The 25% ME Group
Simon Lawrence says that unfortunately he only recently became aware of this conference through the grapevine and that this was probably mainly due to his own ill-health. The 25% Group have therefore no arrangements in place to make a statement concerning this and have been unable to campaign because of the lateness.
Response from Jane Colby, Executive Director The Young ME Sufferers Trust
Jane Colby says that The Young ME Sufferers Trust has been liaising with the RSM about redressing the problem of these conferences in the future; that the Trust has made its position clear that the speakers who are taking part will need to be balanced by different speakers in another medical conference. With regard to the Bristol Conference, Ms Colby says that she had got the impression that another demo* was being organised but that it now seems that this may not be the case after all. However, the Trust’s position is the same as it was for the London conference, because the Trust expects the same messages to be expressed by these speakers.
*Ed No announcement had been made that a demonstration of any kind had been organised for Bristol. A notice had been circulated by Gus Ryan on some internet forums and e-lists asking for anyone interested or who knew of anyone who would be interested in organising / attending a gathering outside the conference to contact him.
I will be commenting on these responses after I have heard back from The ME Association and Invest in ME.