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

[Cinders66]

Pretty obvious that the naming of the "final" plan was meant in a "this is the last thing we will be doing or talking about it, we are done, this is final" way

Good observation, which should trigger next level advocacy, except our UK charities unlike many others, do not run campaigns and do not have plan b for when collaboration and docile negotiations fail, which they have. Even the short lived research hub campaign was half-hearted. What was the point of the 2 years doing the 13 years too late & growing out of date JLA PSP with no funding.

Most patients are now excluded from Forward ME discussions - for those who are saying “nothing about us without us” should apply - ie minutes stopped in 2022. It used to be a rare window into what charity leads were actually thinking, planning and saying. Presumably the undeclared plan, now they’ve decided to roll over on the DHSC delivery plan, as they have every hurdle, is to carry on carrying on and wait for whenever the MRC give them another go, with the timeline suggesting it might be in 4 years, when the PRIME funding on “infrastructure building” finishes. No one in the community who is suffering will find that acceptable - rolling over on sidelining and can-kicking as people loose more years of their lives trapped in one room & state biomedical research investment virtually non existent at a time when there’s so much to explore.

 

[Robert 1973]

I am very disappointed that we have not had more enthusiasm for SequenceME from funders. I met someone in charge from MRC at the Royal College meeting and my heart sank.

This is really disappointing to hear – particularly on a thread about reasons for hope. For decades the MRC’s excuse for lack of funding has been that there has been a lack of high quality applications/proposals/ideas. I’ve not managed to keep up. What is their excuse now?

I wonder if this is something we could usefully ask our MPs to lobby the DHSC and MRC about?

The quotes above are from a different thread. I’m sharing them here as they are relevant to this thread.

 

[Tao Fogger]

Alison Hume Labour, Scarborough and Whitby​

To ask the Secretary of State for Health and Social Care, whether his Department will be assessing the impact of new developments in Myalgic Encephalomyelitis and Long Covid research, such as the findings of the LOCOME project, on health policy towards those living with long term health conditions.

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• Hansard source(Citation: HC Deb, 14 January 2026, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care​

On 6 November, the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC) jointly hosted a showcase event for post-acute infection conditions research, which included a review of the DecodeME research project and the PrecisionLife study on myalgic encephalomyelitis (ME) and long COVID research. PrecisionLife is leading on the LOCOME, or LOng COvid and Myalgic Encephalomyelitis Diagnostics Stratification, project. The showcase event was attended by speakers from a range of disciplines, including researchers, people with lived experience, ME charities, NIHR and MRC representatives, as well as Government officials.

The Department is always very keen to reflect newly emerging research findings in its policy-making.

 

[Tao Fogger]

Rachael Maskell Labour/Co-operative, York Central​

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 10 December 2025 to Question 95676, whether his Department has conducted any evaluation of patient safety risks affecting people with severe and very severe ME/CFS, including malnutrition.

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• Hansard source(Citation: HC Deb, 15 January 2026, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care​

Patient safety risks affecting people with severe and very severe myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), including malnutrition, have been considered during the development of the final delivery plan (FDP) published in July this year, through engagement with stakeholders, including clinicians and patient groups.

To this end, the FDP includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.

 

[V.R.T.]

It's mind boggling that they could be getting so many questions in parliament about this for so long and just keep pretending everything is fine in their replies.

It reminds me of that meme of the cartoon dog in the burning house.

 

[NelliePledge]

That’s much more like it as a question. Focus on key issue of very severe and malnutrition. Can’t answer without addressing the topic.

Given the response is unsurprisingly initial and waffly about “discussions how best to take forward this action” there is ample scope for regular follow up questions requesting progress updates every few months I reckon.

If questions don’t get answered satisfactorily they could then seek another Westminster Hall debate on the issue.

 

[V.R.T.]

To ask the Secretary of State for Health and Social Care, whether his Department will be assessing the impact of new developments in Myalgic Encephalomyelitis and Long Covid research, such as the findings of the LOCOME project, on health policy towards those living with long term health conditions.

This is good but we need MPs to stand up and ask them to fund SequenceME. Specifically and repeatedly.

 

[hotblack]

That’s much more like it as a question.

Absolutely. Given we have prevention of future death reports, it seems like banging the drum to make hospitals at least safe for severe/v-severe patients is a clear obvious focus.

 

[Tao Fogger]

There was a second reading of the rare cancers bill in the Lords yesterday. Not a ME/CFS topic, but the following point was made which seemed worth quoting here:

First, these cancers and other neglected diseases such as chronic fatigue syndrome and long Covid face a structural Catch-22. With no historic research funding, they have limited research capability. When their few brave clinicians try to secure funding, they compete against academics in well-funded areas with resulting strong citation track records. As a result, they cannot compete and fail to get funding, perpetuating the cycle. UKRI is loath to create disease-dedicated funding streams in case scientific quality falls and “citations per R&D pound invested” drops. A solution to this Catch-22 must be found. Perhaps UKRI could bundle all these neglected diseases together, which would maintain competition and so scientific quality, but on a much fairer basis. I would urge Ministers to direct research funders to explore the merits of such a scheme.

The full debate can be read here: https://www.theyworkforyou.com/lords/?id=2026-01-16a.1957.1

 

[bobbler]

There was a second reading of the rare cancers bill in the Lords yesterday. Not a ME/CFS topic, but the following point was made which seemed worth quoting here:



The full debate can be read here: https://www.theyworkforyou.com/lords/?id=2026-01-16a.1957.1

What does the US Orhpan diseases (I think that’s the one for rare diseases) and NORD etc work like ‘on the ground’ ? Can anyone add more heat to bones on whether it is significant and fast enough and avoids the issues of being taken over by niche ideas like bps using ‘being the only researcher’ in an area to then grow a whole industry and control of guidelines (by being only researcher then even if it’s biased low quality getting the only seat at table on guideline development) etc?

 

[Cinders66]

What does the US Orhpan diseases (I think that’s the one for rare diseases) and NORD etc work like ‘on the ground’ ? Can anyone add more heat to bones on whether it is significant and fast enough and avoids the issues of being taken over by niche ideas like bps using ‘being the only researcher’ in an area to then grow a whole industry and control of guidelines (by being only researcher then even if it’s biased low quality getting the only seat at table on guideline development) etc?

They could just specify biomedical research?

the gvt & Medical Research Council could have released a funding call any time in history, as it had done for long covid in 2021 (welcomed by Chris Whitty), but in 2022 it could have been based on the ten priorities in the JLA PSP, which Action for ME at the time were assuring patients would lead to funding.The GVT/ MRC wouldn’t have dared to have make the "sorry, no infrastructure" argument & withheld funds from the long covid community 2021.

They could just fund the multi - angle (although too lacking on cognitive dysfunction & neurology) research Hub. Their excuse regarding "wanting to maintain flexibility" was "b..."
The idea the MRC simply could not come up with any better way forward, in its quarterly meetings with UK mE orgs since 2007, is nonsense.

Protecting research budgets and maintaining scientific excellence should be considered in the wider context of large annual costs to economy/ the tax payer, huge Human costs and the length of time a stigmatised illness has been languishing without progress. For m.e, there are additional considerations, in the role the medical establishment played in failing to educate itself or provide safe-care. It took years for most to even listen or believe. Most of the mess we have to undo was of their making.

In terms of taxpayers getting a fair deal, parents of those with HIV are getting much better deal / more resources (and obviously outcomes) than parents of children with m.e., who I think on average have seen £1/patient/year UK biomedical investment since "the collaboration era" began in 2006.

Leaving the stigmatised m.e research field without any incentives, and the medical establishment free to carry on cold-shouldering a swathe of illnesse - in favour of the established, the lucrative, the prestigious, or more relatable - should not still be happening 2026. M.e orgs should not be accepting & arguably facilitating in a friendly manner, the, in my view, *outrageous* DHSC delivery plan response, that after 3 decades of harm and neglect, the only way forward was to invest *tiny* sums in "building capacity" & improvements in education. With no accountability for the lack of such actions over decades.

 

[Cinders66]

There was a second reading of the rare cancers bill in the Lords yesterday. Not a ME/CFS topic, but the following point was made which seemed worth quoting here:



The full debate can be read here: https://www.theyworkforyou.com/lords/?id=2026-01-16a.1957.1

Yes,People have stated the same for m.e. Great minds can devise great ways to overcome massive challenges. Dr Charles Shepherd has Indicated - finally- that what is lacking is will. However we / they exert no pressure on “the powers that be “ to find any will

 

[hotblack]

This is good but we need MPs to stand up and ask them to fund SequenceME. Specifically and repeatedly.

We’d all love that to happen, but tbh we know it will just result in the same answer saying it is the responsibility of the funding body… It would be great for people to write letters to their representatives on this but I’m not sure questions in the house will have the biggest impact.

Focusing on the needs of severe and v severe people in the NHS where we have clear independent evidence of failure seems more likely to put pressure and get public attention IMHO. And could open the door to wider changes in how people with ME/CFS are seen within the NHS.

People with little understanding of the issues will see the message that the NHS is not safe for people and can get behind calls for change more readily than ‘oh it’s another condition that wants funding’ or special treatment.

 

[V.R.T.]

We’d all love that to happen, but tbh we know it will just result in the same answer saying it is the responsibility of the funding body… It would be great for people to write letters to their representatives on this but I’m not sure questions in the house will have the biggest impact.

Focusing on the needs of severe and v severe people in the NHS where we have clear independent evidence of failure seems more likely to put pressure and get public attention IMHO. And could open the door to wider changes in how people with ME/CFS are seen within the NHS.

People with little understanding of the issues will see the message that the NHS is not safe for people and can get behind calls for change more readily than ‘oh it’s another condition that wants funding’ or special treatment.

Conversely, we need the research funding because a breakthrough is likely the only thing that will stop the bureaucratic machine that makes people deterioate and then punishes them for doing so.

SequenceME might actually be the thing that stops all of it from very severe people in hospital to mild people being told there's nothing wrong with them and to go for a run.

And publically asking for something concrete rather than 'more funding' might have a different effect.

 

[bobbler]

We’d all love that to happen, but tbh we know it will just result in the same answer saying it is the responsibility of the funding body… It would be great for people to write letters to their representatives on this but I’m not sure questions in the house will have the biggest impact.

Focusing on the needs of severe and v severe people in the NHS where we have clear independent evidence of failure seems more likely to put pressure and get public attention IMHO. And could open the door to wider changes in how people with ME/CFS are seen within the NHS.

People with little understanding of the issues will see the message that the NHS is not safe for people and can get behind calls for change more readily than ‘oh it’s another condition that wants funding’ or special treatment.

Agree it’s worth thinking of what can actually get somewhere and how these become more of a plan that can move forward over longer time periods vs getting the same answers back and it not building necessarily to something.

I think it’s the German thread where someone mentions that media-wise the emphasis there has been much more on the severe end of the spectrum compared to here

It would be interesting to perhaps get a lot more detail on this?

I don’t know precisely how the mevhanics of country wide political stuff works in Germany vs here due to different health system and regions etc

But it’s interesting seeing their decade of research vs I don’t know (and assume it’s a varied mixed bag) on the treatment front - it would be interesting to see how it’s coordinated there

 

[hotblack]

SequenceME might actually be the thing that stops all of it from very severe people in hospital to mild people being told there's nothing wrong with them and to go for a run.

Sure, you know how much I want it, have been lobbying for it and have encouraged others here to do the same. I agree research is what will ultimately bring wider change most effectively. But it will take time.

I’m just being realistic about how I see people’s reactions and the limited resources of questions in the house. And that there is an urgency which can be fixed now and something which the public see as clearly the government’s responsibility. Others may of course disagree, but to me the questions have been all over the place with no clear strategy. We should be focused and get all MPs to hammer home one point. The NHS is unsafe for a group of people.

 

[V.R.T.]

Sure, you know how much I want it, have been lobbying for it and have encouraged others here to do the same. I agree research is what will ultimately bring wider change most effectively. But it will take time.

I’m just being realistic about how I see people’s reactions and the limited resources of questions in the house. And that there is an urgency which can be fixed now and something which the public see as clearly the government’s responsibility. Others may of course disagree, but to me the questions have been all over the place with no clear strategy. We should be focused and get all MPs to hammer home one point. The NHS is unsafe for a group of people.

Yeah you're probably right. I guess I've just become jaded about the possibility of this government doing anything to help pwME within the NHS in the meantime, with their close ties to Wessely and and general ableist policies.

But you're right, that point is the one most likely to get people to sit up and take notice.

I didn't mean to imply you weren't aware of or involved in the campaign for SequenceME funding and I'm sorry if it came off that way.

 

[hotblack]

I didn't mean to imply you weren't doing anything to campaign for SequenceME and I'm sorry if it came off that way.

It really didn’t, it’s okay, And I may not be right! It’s just a point of view and a shared frustration of things not happening and some rubbish lobbying from MPs. And probably my own fears of the NHS! All good and please continue to argue for what you believe

 

[V.R.T.]

And probably my own fears of the NHS!

I entirely sympathise there. I keep putting off problems I should get investigated because I can't put myself through being treated like shit by consultants again.

To say nothing of the fear of what I would go through during a hospital admission...

 

[Tao Fogger]

Laura Kyrke-Smith Labour, Aylesbury​

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure consistent application of NICE guidelines across Integrated Care Boards for the diagnosis and access to specialist care for the treatment of ME/Chronic Fatigue Syndrome.

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• Hansard source(Citation: HC Deb, 19 January 2026, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care​

National Institute for Health and Care Excellence (NICE) guidelines are evidence-based, informed by clinical expertise, and represent best practice. Healthcare professionals and integrated care board (ICB) commissioners are expected to take NICE guidelines fully into account when designing and delivering services, including for the diagnosis and treatment of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). NHS England ensures that ICBs follow NICE guidance through a combination of statutory oversight frameworks, annual performance assessments, and local clinical governance requirements.

We published the final ME/CFS delivery plan in July 2025, which is available at the following link:

https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan

The plan focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease. It also sets out a series of actions, which will help address the key challenges and drive forward improvements to outcomes and quality of life for people living with ME/CFS in England.