North Wales Assembly Member and Chair of the Assembly Cross Party Group on Neurological Conditions Mark Isherwood AM has called again for a Welsh Government Statement on Myalgic Encephalomyelitis or Chronic Fatigue syndrome - ME/CFS - in Wales.
Last November, Mr Isherwood hit out at the then Leader of the House, Julie James AM, for failing to respond to his call for a Welsh Government Statement on the chronic illness.
In yesterday’s Business Statement he called on her successor to provide a Statement, highlighting concerns that the National Institute for Health and Care Excellence guidelines currently promote Cognitive Behaviour Therapy (CBT) and graded exercise, which can actually make symptoms worse.
Speaking in the Chamber he said:
“Last Sunday was ME Awareness Day, on 12 May, and this month is ME Awareness Month. I called for a similar Statement on 13 November after I hosted an event here with the Welsh Association of ME and CFS Support (WAMES) and with ME Support in Glamorgan (MESiG), and the showing of a film called Unrest, which led to calls for the Health Secretary here to address as a matter of urgency the continuing need for improved access to timely diagnosis, for GPs to fully understand the symptoms of the condition, and for the development of a standardised training and awareness programme in Wales.
“We also saw a copy of the ME Trust's 2018-21 strategy, the 'Vision into Action' paper, which said that parts of the UK, such as Wales, had no specialist services.
“Unfortunately, the Minister responded by stating she didn't think there was ‘any need for a supporting statement. (And I know) The Minister is pleased with her refill policy and no doubt will be bringing something back to the Chamber in the course of it to tell us how well it's doing’. Well, we haven't, as far as I'm aware, yet heard.
“I've now been contacted again by Dr Nina Muirhead, who spoke at that event, who has been diagnosed with ME/CFS herself, following glandular fever, who's not only an NHS doctor but also an academic working at Cardiff University. She tells me that she's been in touch with the Major Health Conditions Policy Manager at the Welsh Government, who she believes is now working on Policy for Major Chronic Health Conditions, including ME/CFS, and she reiterates that, prior to becoming ill herself, she followed the National Institute for Health and Care Excellence guidelines, which perpetuated her misunderstanding of the condition by recommending Cognitive Behaviour Therapy (CBT) and Graded Exercise (GET), where, from her experience (of ME/CFS), there was no psychological component, and exercise, if anything, was making matters worse.
“She concludes that ‘the reality is ME/CFS is a serious, heritable, neurological condition’. I therefore call for a Statement and hope that you will be more forthcoming than your predecessor when I called for a similar statement last November.”
Responding the Minister for Finance and Trefnydd said:
“We do understand the challenges faced by people living with this condition and the impact that it can have on their daily lives, and also the importance of ensuring that the correct advice is available to them and also the correct treatments, and that's why we're working with healthcare professionals and the third sector to strengthen ME services available across Wales. I will ask the Health Minister to reflect on your comments this afternoon and to provide you with an update on the latest situation.”
