On the 13th May, Dr Charles Shepherd, MEA Hon. Medical Adviser, was interviewed on UCB radio as part of their Talking Point show with Ashley Andrew. To listen in on Catch Up, click the link below, scroll down to find the programme (Talking Point show with Ashley Andrew, 13/05/2026, and skip to time stamp 1:10:00)
Extracts:
For may people it's a very long term, very disabling medical condition, that involves the muscles, the brain and the bodies immune system, which is partly why we call it Myalgic Encephalomyelitis. At the moment we think it affects around 400,000 people in the UK…
A lot of people don't realise that about a quarter of people with ME/CFS are in the Severe category, meaning that they're housebound. At the Very Severe end of this group, they're totally bedbound, totally reliant on personal care from a carer or people coming in to look after them, and they may even need tube feeding. And these people have not only been severely affected, but severely neglected by the National Health Service.
So we want to see people with Severe ME, who are largely housebound, have some sort of domiciliary care, provided by the NHS services. And at the Very Severe end, where people have been very badly managed, I'm afraid, in hospital, where they've been admitted to hospital, we want to see a national service provided with expertise for people at the very severe end of the spectrum…
The pace of progress has been disappointingly slow, there's no doubt about that, but things are happening.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
