The forthcoming Royal Society of Medicine (RSM) conference, being held in Bristol on September 18 with the theme Chronic Fatigue Syndrome, is an unwelcome example of how a small but very influential minority of the medical profession is stubbornly refusing to listen to the very group of patients it claims to serve.
Even before an identically-named conference was staged in London last April 28, this one had already been timetabled with the same leanings, some of the same participants and lectures. Both would always go ahead despite an unprecedented amount of communication - perhaps five or six times the usual for other ME issues, with some very ill people moved to write for the very first time - to the RSM, the press; one eminent ME specialist even wrote to the Queen.
The serious concerns now, as they were in April and as they will be in the future, if the RSM persists in ignoring ME sufferers, are that there is a bias towards a psychiatric view of the illness, promotion of treatments intended for illnesses of a psychiatric origin, in line with the NICE guidelines, a preference for the name Chronic Fatigue Syndrome and a lack of consideration and funding for more promising biomedical research.
The majority received no reply at all. Those who did will have been frustrated or angered, rather than comforted or appeased at the abrupt, defensive, arrogant tone delivering, sometimes, factually incorrect content about the conference's organisation and content.
Those who were told that there are some events to which ME patients are invited will wonder why they are excluded from any.
It did go ahead, the effect of a small peaceful protest of a dozen or so quite severely-affected people, some in wheelchairs, thwarted by the simple device of closing the gates at one entrance to the building.
ME sufferers will wonder why one of the speakers, this time, is billed as a "person with CFS/ME", when her principal role is as chief executive of the sister group of the only other ME organisation to have been invited to speak because they are more sympathetic to the NICE proposals than every other ME group which, without exception, have published responses of varying degrees of opposition.
They will also hope that there is not a repeat performance of the difficulty of and delay in, transcripts and videos of the proceedings becoming available.
I anticipate an even greater clamour of protest this time than last, perhaps with new voices raised but, I predict that these few will still decide the fate of ME sufferers without the proper scientific mandate for doing so.
drjohngreensmith@mefreeforall.org