A week after the recent RCGP Annual Primary Care Conference & Exhibition held in Glasgow on the 4th – 6th October, it seems appropriate to reflect on the impact of the conference on educating GPs about myalgic encephalomyelitis (ME). The RCGP Conference is the must-attend event of the year for GPs and practice team colleagues, showcasing the latest clinical and policy developments across the UK.
#MEAction was delighted to be a part of the Forward ME exhibition stand, staffed by volunteers and staff from #MEAction Scotland, the ME Association, Action for ME, 25% ME Group and Tymes Trust. The workshop ‘Key messages for primary care on the diagnosis and management of ME/CFS’ was extremely popular with an estimated 250 GPs in attendance, and some delegates reporting to volunteers that they had been unable to get in! The workshop took place on the first day of the conference and was delivered by Dr. Shepherd (ME Association), Dr. Speight (TYMES Trust) and Dr. Purdie (Action for ME)
Janet Sylvester and Gillian Grant from #MEAction Scotland volunteered to help on the stall with other Forward ME members. Janet highlights the importance of the conference and how connecting with GPs was key: “It was very interesting to meet a so many GPs and talk to them about their experience of supporting people with ME. We handed out a range of leaflets and material from the charities and tried to answer a huge range of questions from the delegates. Whilst it was depressing how little GPs understood about ME, it felt as though our presence, along with the Forward ME workshop, made a real impact.”
The feedback received on the content of the workshop (which covered topics including diagnosis and management of children and adults with ME and issues relating to patients diagnosed with severe ME) was universally positive, and the level and amount of information provided appeared to have proved helpful to GPs, whatever their prior knowledge of ME.
Over the two days of the exhibition, the stand was visited by over 100 delegates, providing the volunteers from #MEAction Scotland and the other charities with many opportunities to answer questions from GPs as well as directing them to additional resources on ME.
The principal take away from the workshop seemed to be the harm caused by the current recommended treatment of Graded Exercise Therapy (GET), judging by the fact that the most common question following the workshop was, “How can I support people with ME when the only recommended treatment is believed to be harmful?” As GPs are usually the first point of contact that most ME patients have with the medical profession, the fact that the harm of GET has been brought to the attention of members of the profession from all over the UK should be regarded as a step in the right direction.
Thanks to everybody involved – your contributions and attendance ensured the success of the Forward ME presence at the conference.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the