The ME Association wrote to Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention, last week (4th March 2025) to raise a number of queries and concerns about the DHSC Delivery Plan for ME/CFS.
We have not yet received a reply. A copy of this letter was also sent to Jo Platt MP – Chair of the APPG on ME.
Letter
Dear Minister
Firstly, the ME Association would like to welcome you to your new ministerial post at the DHSC and to thank you for taking the time to recently meet with a person who has ME/CFS to learn about living with this very debilitating illness.
I know from a recent DHSC Delivery Plan meeting that you are also taking an active interest in the progress of this initiative that aims to improve the care and management of people with ME/CFS – which is supposed to be provided by the NHS.
In relation to the intended publication date of the Delivery Plan, I would be grateful if you could clarify whether the information in the parliamentary reply to David Reed, which states that this will be in the ‘coming months’ means that there will now be a further delay.
If so, we will need to explain to the ME/CFS patient community that publication in March, which has been the stated date up until now, appears unlikely.
Parliamentary question below
Could I now raise two very important concerns relating to NHS care for people for ME/CFS and the need to energise and fund biomedical research into ME/CFS.
There is increasing concern in the patient community that the final version of the Delivery Plan is not going to contain any really decisive actions that will bring about a much needed improvement in NHS care and management of people with ME/CFS along with biomedical research into the cause and management of ME/CFS that is so urgently required.
In relation to NHS care and management for people with ME/CFS, I understand that the scoping exercise on specialist service provision that has been carried out by NHS England is now complete.
Unfortunately, this scoping exercise will almost certainly confirm that the provision of specialist referral services is very patchy, that new referral services are not being set up where they are desperately needed, and that where they do exist they are not providing the range of diagnostic and management services, especially for people with severe and very severe ME/CFS, that is recommended in the NICE guideline on ME/CFS.
The failure of the NHS to care for people with severe and very severe ME/CFS has been highlighted by the tragic death of Maeve Boothby O’Neill and the Prevention of Future Deaths Report that was prepared by the Coroner.
Where an ME/CFS specialist referral service currently exists it should have the staffing and facilities to diagnose and manage all aspects of ME/CFS that is consistent with the very clear recommendations in the new NICE guideline on ME/CFS.
Referral services should be physician led so they are able to correctly diagnose ME/CFS (as there is a high rate of misdiagnosis in primary care) and then provide a full range of symptom management options, including the use of prescribed medication.
However, this is just not happening and very little progress has been made since publication of the new NICE guideline of ME/CFS in October 2021 – apart from the removal of graded exercise treatment from these services.
What we therefore need to see in the final version of the DHSC Delivery Plan is a clear instruction from the DHSC to NHS England (who is obviously responsible for implementation of NHS policy) to ensure that all the integrated care boards are providing an ME/CFS referral service that is fit for purpose and complies with NICE guideline recommendations and provides management information on their websites that is consistent with the NICE guideline.
And if an ICB has not set up a referral service, or is not in the process of doing so, why have they failed to do so and what steps are being taken to set one up?
At present, there is no indication that a robust attempt to improve the current unsatisfactory situation is going form part of the Delivery Plan, or that any extra funding to make sure the ME/CFS referral services are NICE guideline compliant will be made available.
The MEA believes that action and funding for referral services must form a key component of any Delivery Plan if it is going to make any meaningful difference to how the NHS cares for people with ME/CFS – as well as being able to cope with the extra demand on ME/CFS services that is being created by the closure of Long Covid referral services.
In relation to research, the patient community is going to be very disappointed if the Delivery Plan fails to provide the framework for a far more proactive approach to energising research into ME/CFS.
We need a new and ambitious research initiative that mirrors the establishment of a properly funded Dementia Platform that has helped to transform UK research into dementia over the past few years. The current Delivery Plan does not do this and I know that many of my colleagues share this view.
There are now over 2 million people in the UK suffering from ME/CFS, Long Covid, and other post viral conditions. In addition to the human suffering there is a huge economic cost. We need an ambitious and adequately funded research plan that goes much further and faster than what is currently being prepared.
I look forward to your reply and if I can be of any assistance in relation to any aspect of ME/CFS in please let me know.
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
Further information
- The ME Association: Parliamentary Question: Long Covid Clinic Closures | March 2025
- The ME Association: Parliamentary Question on Stocktake of ME/CFS Health Services | March 2025
- The ME Association: Parliamentary Q&A on the ME/CFS delivery plan timescale and effectiveness | March 2025
- The ME Association: House of Lords Q&A on the DHSC Delivery Plan for ME/CFS | Feb 2025
- The ME Association: House of Lords Q&A on ME/CFS Delivery Plan | Feb 2025
- The ME Association: Parliamentary Update on DHSC Delivery Plan for ME/CFS | Jan 2025