Many people may recall a much derided condition called ‘Yuppie Flu’, in the 1980’s, because it seemed to affect young, middle class professionals and had a stigma that led to sufferers being dismissed as malingerers who imagined their symptoms.
“The Unrest film screening event at the Senedd is a pivotal moment for raising awareness of the situation for people with ME/CFS in Wales.”
“We are calling for support and finance for a national training and awareness programme for the NHS in Wales and for the Welsh Government to take on board the current review of ME-CFS provision in Wales and to hold the Health Boards to account given that prior recommendations have not been actioned.”
“We are encouraged, for example, by the fact that the official UK medical advice is under review (NICE guidelines), but Wales needs to demonstrate diagnostic, referral and care pathways for the 16 000 sufferers across Wales.”
Emelyne Burkhard, Chair of MESiG, and also a sufferer.
On-going research, however, has shown that the condition is a serious neurological condition, called Myalgic Encephalomyelitis (ME) or commonly ME / Chronic Fatigue Syndrome (ME/CFS) affects anyone of any age, although about 70% are women. It is the leading cause of long-term school absence amongst children in the UK.
Symptoms include extreme physical and mental fatigue and painful limbs as well as cognitive problems. The condition can also affect memory, concentration and digestion, with 25% of patients housebound or bedbound and the rest struggling with everyday tasks. There is no known cure currently.
ME/CFS research, although poorly funded, strongly suggests that it is a physical condition triggered by a virus which causes both the immune system and the nervous system to malfunction. ME/CFS affects an estimated 16,000 people in Wales, 250,000 people in the UK, and 17 million worldwide. In the UK alone the economic cost is at least £3.3 billion.
“My experience from contact with patients in Wales is that many GPs are still very unsure and uncertain about how to diagnose this illness. They are equally uncertain about how to manage this illness.”
“There are five adult services in Wales but none of them are multidisciplinary physician led which is what these services should be. Overall the situation in Wales is scandalous.”
Dr Charles Shepherd, ME Association, speaking on BBC Eye on Wales (see below).
Shockingly, unlike in England, there is no dedicated medical provision or consultants with specialist knowledge in Wales and seriously lacking to no clinical services. Dr. Charles Shepherd of the national ME Association has described the situation in Wales as “scandalous”.
Consultant and GP awareness is severely lacking and the condition is not on under-graduate medical student courses. The UK medical advice, from NICE, actually aggravates the condition and the NICE guidelines for the illness are currently completely under review, to be re-published in 2020. What do doctors and patients do in the mean time?
Event highlights crisis in Wales
An eye-opening event, attended by over 50 people and attended by 8 AMs, sponsored by Mark Isherwood AM and organised by MESiG (ME Support in Glamorgan) with WAMES (Welsh Association of ME and CFS Support) chairing a patient, carer and GP panel took place, in the Senedd, National Assembly for Wales.
This highlighted the crisis in Wales and the need for action following a brief and moving screening of the award-winning film, Unrest. The film shows sufferers, from around the world, with the camera turned on their lives, carers and families.
The lack of awareness and provision, especially in Wales, was passionately described by one of the panel. Jon Vaughan, carer for his fiancé with ME/CFS said that on diagnosis the support was non-existent with his GP giving only two words of advice: “Google it”.
Note: The Welsh Assembly event took place on Wednesday, 24 October.
BBC Focus on ME/CFS and the Welsh Crisis
BBC Radio Wales ‘Eye on Wales’: “ME/CFS patients in Wales say they’re not getting the diagnosis and treatment they need.”
- Feature broadcast highlighting many of the issues including inappropriate graded exercise.
- With Dr Charles Shepherd from the ME Association, and Dr Nina Muirhead who is also campaigning for improved medical education about ME/CFS.
- 32 minutes in length. Now available to listen again and/or download.
BBC News Wales: “ME and chronic fatigue: ‘Some doctors don’t believe you’re sick’”
- Features a video from Millie Earp, and comments from the BBC radio broadcast above.