Update on planning of RSM “Medicine and Me” conference

Update on the planning of the Royal Society of Medicine’s “Medicine and Me” conference

Note that this proposed event at the RSM’s London conference venue would be one in a series of “Medicine and Me” events for topics around various medical conditions aimed at patient group participation held by the RSM, over the past few years. The title does not refer to “Medicine and M.E.” so this meeting would, ironically, be a “Medicine and Me” event on “CFS” or possibly “CFS/ME”, though the RSM did not use the terms “CFS/ME”, “ME/CFS” or “ME” in its April “CFS” Conference.

Further information about the format of these patient events, which in the past, have been held in association with just one patient organisation, not several, can be found here

 

Some information about this event is beginning to trickle out. In the summary of its September Board meeting, the ME Association reports:

ROYAL SOCIETY OF MEDICINE (RSM) – 2009 MEDICAL MEETING FOR PEOPLE WITH ME: Charles Shepherd, along with representatives from four other national support charities (AfME, AYME, Tymes Trust, 25% Group), will be attending a further planning meeting at the RSM on Thursday September 4th. At present, it looks as though this half day meeting aimed at people with ME, and planned by people with ME and charity representatives, will be taking place in Spring or early Summer 2009. The planning meeting will be deciding on the content of the paired presentations part of the programme and the choice of medical speakers who will be invited to participate.”

 

Meanwhile, Invest in ME has concerns about the selection process through which organisations were invited to participate in the planning of this event and the rejection of its offer to participate in the planning stages of this event.  In its September newsletter, Invest in ME reports:

RSM – Medicine and ME

“After the Royal Society of Medicine announced their intention to hold a conference on CFS in April Invest in ME contacted the then President of the RSM, Baroness Finlay, and passed to her factual information regarding ME/CFS. We also invited her to our London conference and offered help in planning a Medicine and ME conference which we were told the RSM was considering.

“We contacted the Baroness again in July and our letter was passed to Dr John Scadding.

“Dr Scadding replied to our offer to help by stating that only the following organisations were to be invited to be in the planning of this event – the 25% Group, AfME, AYME, MEA and Tymes Trust.

“We replied to Dr Scadding that we thought we could offer valuable experience in planning such an event and have been working on behalf of patients contacting us for help. We weren’t sure why those organisations alone were chosen or why an arbitrary number of organisations seems to have been invited.

“Dr Scadding rejected our offer, having “sought the advice of a number of others”. We can only guess who these “others” are who are advising him.

“Dr Scadding went on to describe the reasons for IiME’s exclusion as –

“… 1. The group is already very large, with the 5 patient charities, patients with CFS / ME and the necessary RSM staff. Very large groups often have difficulty in reaching a consensus in a committee situation. I have planned many Medicine and Me meetings, usually in partnership with just one patient charity / support group. Patients attending the subsequent Medicine and Me meetings have not complained of bias or exclusion of their interests.

2. I am reasonably confident that the group is representative of CFS / ME sufferers overall, and that no interests will be forgotten, excluded or ignored.

3. The programme for the Medicine and Me conference must be driven by the patients on the planning group.

I think we need to be realistic about what can be achieved in a Medicine and Me meeting. It lasts only about three and a half to four hours. Three or four key areas of interest are nominated by the patients on the planning group; patients speak first on these and each is followed by an expert response. The topics may be about diagnosis, research, treatments, access to treatment, stigma, prognosis, etc etc. During the concluding lengthy panel discussion, any matter of concern about the condition to those in the audience can be raised, not just those forming the focus of the patient presentations.

It is clearly impossible in the time available during the meeting to cover every aspect of any disease, and patients have often requested further meetings (which we are happy to consider, but we need to be mindful of the multitude of chronic diseases that exist, each deserving of a Medicine and Me meeting).

I cannot predict at this stage the topics that will be chosen within CFS / ME to form the focus of the Medicine and Me meeting, but if you would like to make some suggestions now, I would be very pleased to float these at the planning group meeting.

I am aware of the interest of Invest in ME in promoting biomedical research, and I am sure this will be discussed. Indeed, it may well be that this is one of the topics chosen, but that is for patients to decide…”

 

As far as I can tell, the RSM has not made webcasts and PowerPoint presentations of previous “Medicine and ME” events available on its website, as it did following its “CFS” Conference, in response to pressure from the ME community.

Many of those who would have liked to have attended this “Medicine and ME” event will be disenfranchised because they are too unwell to travel, because of the cost of travel and conference tickets or because like me, they have committments as carers.

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