UK House of Lords/ House of Commons - relevant people and questions

At the very least at least ME/CFS advocates don’t have to start from scratch educating someone about the existence of the illness and basic information. Based on previous involvement speaking in debates etc I would hope she’s going to do what she can to push DHSC and NHS from the inside, not as much political clout as Sajid Javid had as the Secretary of State for health but still potentially helpful.
 

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 5 November 2025 to Question 86003, if his Department will commission a specific comparative review, in collaboration with the Medical Research Council, into the relative level of National Institute for Health and Care Research funding for research into myalgic encephalomyelitis/chronic fatigue syndrome compared with other long-term conditions.

Photo of Zubir AhmedZubir Ahmed The Parliamentary Under-Secretary for Health and Social Care​

The Department does not intend to commission a specific comparative review into the relative level of National Institute for Health and Care Research (NIHR) or Medical Research Council funding for research into myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), compared with other long-term conditions. We recognise that ME/CFS is an under-researched area, and we are committed to working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting and funding more research and capacity-building programmes.

As outlined in the ME/CFS Final Delivery Plan, there has historically been a relatively low amount of biomedical research funded on ME/CFS, compared with disease burden. Our efforts are focussed on delivering the actions outlined in the ME/CFS Final Delivery Plan to support and increase research in this area. Since our answer to Question 86003, we have hosted a showcase on post‑acute infection conditions, bringing together people with lived experience, researchers, clinicians, and funders to stimulate further research. A summary of this showcase has been published on NIHR Open Research. We have also made progress with our new funding opportunity for development awards focussed on the feasibility of a phase 2 platform clinical trial. This would test multiple repurposed pharmaceutical interventions and/or non-pharmacological interventions for the treatment of post-viral conditions including ME/CFS. The committee will now consider the applications, and shortlisting decisions will be shared with the researchers in March.
 

Photo of Tessa MuntTessa Munt Liberal Democrat, Wells and Mendip Hills​

To ask the Secretary of State for Health and Social Care, what clinical criteria are under consideration for determining eligibility for any nationally prescribed specialised service for severe or very severe ME.

Photo of Sharon HodgsonSharon Hodgson The Parliamentary Under-Secretary for Health and Social Care​

The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.
 
saying they can’t answer in the time available is better than getting a digging heels in general knee jerk waffle about the final delivery plan.

Not saying this happened but I can imagine a scenario where I as new minister and department had provided something like that it would be a good opportunity for me to tell them I’m not signing it off. Or it could just be the officials now realise they have to give substantive responses because the issue isn’t going away.
 
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BrightCandle said:
At some point someone has to ask the question why it is that so many patients exist and have no healthcare provision at all from the NHS and the funding for research by government is pence per person a year and nothing has been done to correct this.
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Especially when the government have announced endless programmes aimed at getting people back into work, but are not investing in getting a huge chunk of people well. If nothing else it would be a decent return on investment, without the human cost of doing nothing.

We need to keep applying pressure via Parliamentary questions.
 
JellyBabyKid said:
Especially when the government have announced endless programmes aimed at getting people back into work, but are not investing in getting a huge chunk of people well. If nothing else it would be a decent return on investment, without the human cost of doing nothing.

We need to keep applying pressure via Parliamentary questions.
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Agree. It’s short term thinking. We want to get people back to work but won’t do what is needed to enable that is an abdication of responsible policy making.
 
NelliePledge said:
Not saying this happened but I can imagine a scenario where I as new minister and department had provided something like that it would be a good opportunity for me to tell them I’m not signing it off. Or it could just be the officials now realise they have to give substantive responses because the issue isn’t going away.
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Yes, it does sound to me very like what happens when a minister is given the usual placeholder answer by a department official and says ‘no, try again’.
 

Photo of Max WilkinsonMax Wilkinson Liberal Democrat Spokesperson (Home Affairs)​

To ask the Secretary of State for Science, Innovation and Technology, what progress the Medical Research Council has made on delivering ME/CFS research improvements.

Photo of Kanishka NarayanKanishka Narayan Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)​

The Medical Research Council (MRC), which is part of UK Research and Innovation (UKRI), has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, investing over £4.65 million since 2020, and welcomes high quality applications in this area.

MRC is working with the Department for Health and Social Care (DHSC) and the National Institute for Health and Care Research (NIHR) to deliver on agreed actions from the ME/CFS Final Delivery Plan. This includes funding strategic initiatives to increase research capacity and hosting engagement events to bring together research funders, commercial and academic researchers and patient representatives. For example, in November DHSC, NIHR and UKRI, co-hosted a research showcase to discuss and explore the ongoing research in the fields of ME/CFS and long COVID. MRC continues to liaise with the ME/CFS research community to support future applicants.
 
Ha, we are back to what the Senned uncovered - is there no more news to be had, as specified, specific news of those 7 research hubs with Wales asking for one in Wales, or is it a trade secret, like a Specsavers deal with the NHS

Heh, maybe Professor Tyson's Rehab Academy can run a research hub in Cornwall for the MEA's AI, now she is retired, keep company with Russell Fleming, and maybe Elaros can hande its data platform and monetise the research conferencing, once it obtains Professor Altmann's validation, or the Pulse can bring in Cogara Cogora do all that stuff and its AI can run the roundtables too, or does the Government have a better offer?

This question certainly needs one of the Narayans
 
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I was asking AI about the so called prioritising claim that the MRC has hidden behind, which seems to amount to the passive “welcoming of applications”; a showcase that is little different to previous CMRC small conferences; a highlight notice, that over 20 years has been shown to be ineffective in driving interest and overcoming stigma and prioritisation in the particular context of when m.e research proposals are in a tie situation, when competing in the open market against more well-established illnesses where m,e is inherently disadvantaged.

Grok said this: (if people don’t like “grok said”: or lack of exploration of sources, they can ask the questions themselves & review each source which I am not well enough to do). I think it “rings true” and i post it because it is worth challenging what we are constantly being told in every answer in the commons, ie that M.E need, after decades of little progress (which translates as very sick patients being left to rot) is essentially “met” by tiny gestures and so called prioritisation, which, Afaics, doesn’t stand up any scrutiny.

Yes, there is substantial evidence and widespread agreement among patient advocates, charities, and some independent analyses that most ME/CFS research proposals face inherent structural and systemic disadvantages that make it extremely difficult for them to reach the "equal merit" threshold required to benefit from the MRC's prioritisation mechanism.

The MRC's priority area notice (in place since 2003) only provides a boost when proposals achieve the same median ranking score as others in a funding round after peer review. In practice, this tie-breaker rarely comes into play for ME/CFS because far fewer proposals even make it to that competitive stage, and those that do often score lower due to entrenched barriers. Here's why this happens, drawing from documented criticisms and data:

  • Very low volume of applications: Historical data (e.g., from 2003-2023 analyses shared in ME/CFS research communities) shows an average of only about 2-5 genuine ME/CFS-focused proposals submitted to the MRC per year in recent decades, with many being
    "false hits" (e.g., projects on general fatigue or overlapping conditions). The MRC's overall grant success rate is around 20% (roughly 1 in 5 funded), so statistically, you'd need at least 5 high-quality submissions annually to expect even one funded-but the submission rate has remained vanishingly low. This scarcity means few opportunities for any to reach "equal merit" comparisons.
  • Inherent disadvantages in proposal quality and scoring:
  • Lack of preliminary data: ME/CFS is an understudied field with no widely accepted biomarkers, limited large cohorts, and historical stigma framing it as psychosomatic. Funders (including MRC panels) often demand strong pilot data, preliminary results, or proof-of-concept evidence. Emerging or exploratory proposals (common in a nascent field) struggle here, as researchers can't easily generate that data without prior funding-creating a catch-22.
  • Peer-review biases and expertise gaps: Panels may include reviewers without ME/CFS expertise who apply standards from better-established fields (e.g., expecting large sample sizes or clear mechanisms that don't yet exist due to underfunding).
    Historical examples (including UK and international parallels like NIH panels) show occasional outright bias, where proposals are dismissed as "psychosomatic" or scored lower due to unfamiliarity with the condition's complexity.
  • Stigma and researcher deterrence: The field's reputation (influenced by past controversies like the PACE trial) discourages top researchers from entering, reducing the pool of experienced applicants who could produce highly competitive proposals. This perpetuates a cycle: fewer strong applications → lower average scores → fewer tie-breakers triggered → continued


In short, the prioritisation is real on paper but largely theoretical in practice for ME/CFS—most proposals never hit "equal merit" because of these baked-in hurdles. This is why advocates push for structural changes like ring-fenced pots, dedicated RFAs (requests for applications), or bias-mitigating measures to level the playing field and kickstart the field. Without them, the mechanism alone can't overcome decades of neglect.
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The main ways the DHSC non delivery plan seems to be offering To “advance the field” - read “save lives of harmed people, bedbound twenty years” - despite all these inherent problems, is to slowly improve the scandalously neglected areas of awareness & education, to slowly “build up” the long- debated issue of capacity via tiny funding for network building & data collection and some tiny funding for some, what will be unfortunately still be “pot luck”, drug repurposing trials, to tick the “we are funding biomedical research” box.
 
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Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Work and Pensions, what recent assessment he has made of the adequacy of Personal Independence Payment assessments in addressing the fluctuating and energy-limiting nature of Myalgic encephalomyelitis.

Photo of Stephen TimmsStephen Timms The Minister of State, Department for Work and Pensions​

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a medically recognised condition associated with a range of disabling effects which depend upon the severity of the condition.

All Health Professionals (HPs) receive comprehensive training in disability analysis, including how to assess the impacts of medical conditions on claimant’s day-to-day activities, as well as awareness training in a range of conditions, symptoms and disabilities. HPs have access to a wide range of Core Training and Guidance Material (CTGM). These resources offer detailed clinical and functional information, including the potential risks and limitations of a range of conditions, such as ME/CFS, to support HPs in delivering informed assessments. All core training and guidance materials are quality assured to ensure their accuracy from both a clinical and policy perspective.

In addition, the Personal Independence Payment (PIP) criteria consider an individual’s ability over a 12-month period, ensuring that fluctuations are considered. It is essential for the assessment to accurately reflect the impact of variations in an individual's level of impairment, this is important for all health conditions, not only those which more typically fluctuate. For each activity, if a descriptor applies on more than 50 per cent of the days in the 12-month period, that descriptor should be chosen. In general, HPs should record function over an average year for conditions that fluctuate over months, per week for conditions that fluctuate by the day, and by the day for conditions that vary over a day.
 
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