North Wales MS Mark Isherwood has today backed a motion calling for improved care and treatment for those with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, ME/CFS.
Speaking in today's Members Debate on Myalgic Encephalomyelitis (ME), Mr Isherwood referred to a North Wales constituent with the condition, and said despite ME stripping away "their independence and hope", “funding, research, and support remain minimal”.
Speaking in the Chamber, he said:
"Following the release of new NICE guidelines in 2022, Wales should have moved ahead with a clear Care Pathway for people living with ME.
"Back then, Campaigners in Wales told me there might be ‘a service for ME’ within some Health Boards, but, if there was, they didn’t know where these services were, who they were run by, and what treatments they were using.
"However, they had the assistance of the Medical Adviser for the ME Association, who was willing both to work with them to enable people with ME across Wales to obtain the correct medical understanding and support for their condition, and to attend a meeting with the Welsh Government.
"They added that it was ‘currently very unclear where or how people with ME can obtain treatment for ME in Wales’ and that it was ‘pot luck’ if one finds a GP who has a good understanding and training regarding the condition, and they have nowhere to send patients on to.
"I raised this with the Welsh Government then."
He added:
"Moving forward, a North Wales constituent contacted me before today’s Debate to tell me their story.
"They once lived an active, independent life, working as an embedded systems engineer, enjoying sports and holidays.
"Six years ago, a virus changed everything. They developed ME, now severe for three years.
“Their life is now unrecognisable, they are housebound, dependent on family, unable to work or maintain relationships, with all their care privately funded.
“ME has stripped away their independence and hope, yet funding, research, and support remain minimal.
“It is now 18 months since my Written Question to the then Health Minister showed a huge lack of training provision regarding ME/CFS since the change in NICE guidelines in 2022.
“The Severe ME Difrifol Cymru Group, an informal group of people with Severe/Very Severe ME and their carers, therefore asks what NHS-funded training on severe and very severe ME - specifically including input from patients and carers - has been received by professionals in Welsh Government funded Adferiad services and Primary Care, and what further measures the Minister proposes to ensure sufficient awareness of the condition across Health and Social Services?
“The motion today calls on the Welsh Government to ‘ensure that Health Boards truly co-produce their ME and long COVID Adferiad services, taking into account the lived experiences of those suffering at the severest levels and of those caring for them’.
“In August, I met a North Wales representative of ‘Severe ME Difrifol Cymru’.
“I was told that there are currently NO designated NHS services for severe and very severe ME, housebound and bedbound, and that the majority of NHS provision does not use the new NICE guidelines.”
He further added:
“As the motion today states ‘it is often those with the greatest severity levels of ME who are provided with the least amount of appropriate care and treatment’.
“We therefore call on the Welsh Government to support this motion.”
