Forward ME are members of the post-publication engagement group working to implement the actions from the ME/CFS Delivery Plan. This group is run by the Department for Health and Social Care (DHSC). This update concerns the below action from the ME/CFS Delivery Plan:
“DHSC, with NHS England, will explore whether a specialised service should be prescribed by the Secretary of State for very severe ME/CFS”
Chair’s update from Carolyn Leary
Week commencing 23rd March 2026, in response to DHSC and NHSE announcement of the delay in planning services for those very severely affected.
1. On Tuesday 24th March the DHSC sent an email to its wider stakeholder group informing us that NHSEngland had decided that no progress would be made on the above action from the delivery plan. A specialised service for those very severely affected will not be ‘explored’ until April 2027 due to the changes in NHS England. The draft service specification template which is currently being re-drafted would give responsibility to ICBs to provide some level of service for those people severely and very severely affected.
2. As this was an unacceptable response I took the opportunity to meet with Tessa Munt MP, Chair of the APPG and expressed the alarm of the patient community. She made a short video to be circulated that evening stating that she had immediately had a conversation with Sharon Hodgson, Parliamentary Under-Secretary of State in the Department for Health and Social Care and that they would be meeting as soon as they returned from the Easter recess.
(Parliament is in recess from 26th Mar to 13th April, and then prorogued from (likely) 27th April to the Kings speech on 13th May).
Tessa Munt understood the major concerns of the community, hence wanting the video shared that evening. (@TessaMunt.bsky.social) Tessa also reported that she had requested a briefing from Civil Servants on clinical definitions of severe and very severe and had not had a satisfactory response. We talked about working in partnership with Forward ME to ask a small team of trusted clinicians if they would be willing to draft this. This group is about to be set up.
3. I also arranged to meet with the Civil Servants in the Neurological, Post-Infection and Inflammatory Conditions Team. They said they had to put the statement out as it was to meet a legal deadline and they wanted the information to go to the wider community before being shared with the complainants. They reported that the ‘exploration of a specialised service’ was what NHS England had felt able to agree to in the FDP and that it was NHSE who had now said this would be delayed.
We talked about turning this into an opportunity. The risks associated with waiting that long included patient safety, and that we were unclear about the criteria for a specialised service and about not having evidence of prevalence to a standard they would accept. They also said that from April 25 some specialised services had been transferred to ICBs so that was the current direction of travel. The risks of commencing this work and then finding that we fell foul of unknown criteria seemed very high and the patient community needs something sooner.
I re-iterated that the patient community had requested a meeting on patient safety and had not yet had a response. He agreed he would make this happen, so I will follow up with a request for time and date.
NHSEngland (as we are aware) is in flux – they officially ceased March 25 and are in transition with significant job losses.
Sam Jenkins raised the issue of prevalence data. He said that although 25% is a widely used figure he had not seen anything definitive about 25% based on robust data. I argued that there isn’t epidemiological data to the standard that he might want for several reasons, firstly the failure of GPs to code ME and its severity correctly, and secondly the disease burden for patients meaning they are unable to participate barely in research studies. I proposed that instead, the DHSC should work with the patient community/main charities to run a pilot of 3 to 5 years providing services for those severely affected and using this as an action research model to collect data.
Such a service might include a national virtual ward, access to a national response team of our trusted clinicians who could work alongside GPs for home-based care and hospitals where in-patient care is needed. This service would need to be somehow accredited by the NHS so that hospitals and GPs would use it for advice and guidance (a current model for GPs working with specialists). In very exceptional circumstances home visits may be required from the national team. Each ICB should then have a team of specialist nurses to support home-based care. Many who are very severely ill are only able to tolerate care by loved ones, so they would work in partnership with the specialist nurses. This model could only work if the nurses were very well trained as this expertise does not currently exist.
In addition a small number of in-patients beds would be needed, possibly located in 3 regional centres with expertise. It is suggested that DHSC find out how many patients are currently accessing in-patient services and whether that data can be found over, for example, the last 3 years.
Lee was interested in this as an alternative approach to the delayed specialised commissioning non-offer from NHSE. He requested a 2-side summary to continue the discussion.
I asked whether it would be helpful to have ‘clinical’ definitions of severe and very severe as Tessa Munt MP had requested this. He agreed it would be very useful and should form a package of proposals to go out for consultation, including the newly re-draft template specification for ICBs, the Language Matters document that Forward ME has been commissioned to draft and adding this third document to the suite.
Meanwhile #ThereforeME have produced a useful briefing for patients to share with their MPs https://tr.ee/c6lx0MzBsx and from which we can build further discussion.
