Today (18.06.26), Baroness Scott of Needham Market led a debate discussing the treatment and research into severe myalgic encephalomyelitis (ME)
This was a very important issue to raise, as despite the seriousness of the condition, many people continue to face a lack of understanding, limited access to specialist services, and face considerable barriers to receiving appropriate healthcare.
The ME Association has been providing background information to Baroness Scott in relation to the action points regarding severe and very severe ME/CFS that are in the DHSC Delivery Plan. We would like to thank Baroness Scott for her continued advocacy on behalf of the ME/CFS community and ensuring this vital issue receives the parliamentary attention it deserves.
MEA Comment from Dr Charles Shepherd
Firstly, I would like to thank all those members of the House of Lords who spoke so well about the problems facing people with very severe ME/CFS – especially Baroness Scott (to whom we provided background information) and Baroness Walmsley.
In relation to the response from the government minister, Baroness Merron, on what progress is being made on the action points in the Delivery Plan relating to severe and very severe ME/CFS, a small Forward ME sub group on NHS services is currently working with the DHSC and NHS England on the development a template ME/CFS referral service specification for people with mild and moderate ME/CFS. We have been successful in persuading the DHSC to include those with severe ME/CFS in this template. The work on this is now quite advanced and we will be meeting again next week to discuss a new draft.
There is also, as referred to in the debate, a far more important ministerial action point in the DHSC Delivery Plan to explore the need create some form of national specialist referral service for people with very severe ME/CFS. Unfortunately, up until now, we have been unable to obtain any meaningful information as to what is happening to the development of this national referral service and who is involved. The ministerial response today, which indicates that while there is some preparatory work in progress, no real decisions are going to be made until April 2027. This is very disappointing and not acceptable.
Following communication with the DHSC Delivery Plan team on the management of people with very severe ME/CFS, the Forward ME sub-group have submitted some very comprehensive background information on very severe ME/CFS that I have been drafting and co-ordinating. This includes information on the numbers that may be involved along with the definition and medical assessment of people with very severe ME/CFS, especially in relation to nutritional assessment and hospital admissions.
Two other charity based groups, which include the MEA, are working on separate inputs regarding the hospital management of those with very severe ME/CFS and the provision of information and advocacy for people, or their relatives, who are having urgent and serious problems relating to hospital admissions.
So there is important work in progress by the charity sector relating to the care and management of people with very severe ME/CFS who may require hospital admission, or are currently in hospital.
Sadly, there is still no sense of urgency at a government level to address the fact that hospital-based services for those with very severe ME/CFS are non existent. As a result, people with very severe ME/CFS are not receiving the care and management they deserve and this may be placing them in a life threatening situation.
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
