The role of the new British Association for CFS/ME (BACME) in the training of the next generation of doctors and healthcare professionals in ME should be examined by the All Party Parliamentary Group on ME (APPG) when the group reforms after the General Election.
That's the view of six local ME support groups who have banded together as the West Midlands ME Groups Consortium.
They think that BACME – which has apparently taken over as the training forum for NHS staff involved in the care of people with ME/CFS – needs to be more publicly accountable, would benefit from wider patient participation and may be too much under the influence of the psychiatric lobby.
BACME, chaired by consultant paediatrician Dr Esther Crawley appears to have assumed the functions of what used to be called the CFS/ME Clinical and Research Network and Collaborative (CCRNC) but there is little information available about this change in the public domain.
In a carefully worded letter to members of the existing APPG, the West Midlands ME Groups Consortium wrote:
“The APPG are aware of our ongoing concerns with regard to the need for appropriate education and training of those healthcare professionals involved in any ME/CFS services and the particular role of BACME in disseminating training. There remain issues with regard to balance, representation and democratic accountability.
“We note that recommendation 6 of the APPG Inquiry on NHS service provision for people with ME/CFS Interim Report states:
From correspondence with the Royal College of Physicians and the Royal College of General Practitioners, the Group is not convinced that medical students receive sufficient training on ME/CFS, including how to clinically assess and diagnose these patients and advise on appropriate forms of management. The Group recognises that ME/CFS does not have the same obvious impact as cardiovascular disease or cancer, but that it is necessary for medical students to receive adequate training in ME/CFS. The relevant Royal Colleges should ensure that students receive training in this disease.
“Since the last APPG on ME meeting, the “CCRNC Inaugural Research Workshop” was held at St Barts Hospital, London on 7 December. Speakers here included – Professor Peter White, Professor Simon Wessely, Professor Trudie Chalder and two representatives from BACME.
“With the above in mind, the WMMEG requests that a representative from CCRNC/BACME, is invited to a future APPG on ME meeting in the not too distant future. This would give the APPG on ME an opportunity to hear about the CCRNC/BACME, and people affected by ME an opportunity to voice their questions on the crucial issue of education and training.”
Correspondence on the issue was raised briefly under Any Other Business at the parliamentary's group meeting on 10 March. But there was no proper discussion, and no action recorded, as the meeting had run out of time.
The West Midlands Consortium comprises local ME groups from Herefordshire, Solihull and South Birmingham, Shropshire, Walsall, Warwickshire and Worcestershire.
In July last year, 20 co-signatory groups signed a WMMEG statement concerning the key issue of ‘CFS/ME Education and Training for NHS healthcare professionals'.
They're anxious that the issue should not be forgotten, and should be raised as a matter of priority with the incoming APPG after the General Election.