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

Sharon Hodgson Chair, Finance Committee (Commons), Chair, Finance Committee (Commons)
To ask the Secretary of State for Science, Innovation and Technology, what research the Medical Research Council is funding on the (a) causes and (b) treatment of Myalgic Encephalomyelitis.

Sharon Hodgson Chair, Finance Committee (Commons), Chair, Finance Committee (Commons)[/paste:font]
To ask the Secretary of State for Science, Innovation and Technology, what steps her Department is taking to support research into (a) understanding, (b) treating and (c) curing Myalgic Encephalomyelitis.

Sharon Hodgson Chair, Finance Committee (Commons), Chair, Finance Committee (Commons)[/paste:font]
To ask the Secretary of State for Science, Innovation and Technology, how the Government plans to allocate funding for research into (a) myalgic encephalomyelitis and (b) other post-viral diseases.

Andrew Griffith Minister of State (Department for Science, Innovation and Technology)[/paste:font]
Medical Research Council (MRC) has invested in research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, awarding £6.6m in this area since 2012. This includes through DecodeME, the world’s largest ME/CSF study, via strategic co-funding with the National Institute of Health and Care Research, which aims to find genetic factors to better understand ME/CFS disease pathways and unlock future treatment pathways.

We continue to encourage high-quality proposals across our funding opportunities, maintaining an open highlight notice to encourage ME/CFS research. MRC also co-funded the ME/CFS Priority Setting Partnership to identify research priorities for ME/CFS, led by people with ME/CFS, their carers and clinicians, and facilitated by Action for M.E.
 
Lord Hunt of Kings Heath Labour
To ask His Majesty's Government what plans they have to provide funding for biomedical research into (1) the causes of, and (2) potential cures for, myalgic encephalomyelitis.

Lord Markham The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The Department provides funding for research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including on the causes of, and potential cures for, myalgic encephalomyelitis (ME). These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

In the last five years, the NIHR has allocated approximately £3.44 million to support nine research projects on ME and chronic fatigue syndrome. The NIHR is also co-funding, with the Medical Research Council, a £3.2 million study (‘DecodeME’) which is the world’s largest genetic study of the disease.
 
Lord Hunt of Kings Heath Labour
To ask His Majesty's Government what progress they have made on the funding of biomedical research into myalgic encephalomyelitis (ME) since the then Parliamentary Under Secretary of State for Health and Social Care stated on 24 January 2019 that “there have not been good enough research proposals in the ME space, partly because of the stigma … and partly because of the division in the medical community”.


Lord Hunt of Kings Heath Labour
To ask His Majesty's Government how much research funding the National Institute for Health and Care Research and the Medical Research Council have invested in biomedical studies of the causes and treatment of myalgic encephalomyelitis (ME) and non-biomedical studies of ME since 2019.

Lord Markham The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The Department funds research through the National Institute for Health and Care Research (NIHR). Since 2019, the NIHR has awarded £1.9 million for research into myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The Medical Research Council (MRC), part of UK Research and Innovation (UKRI), has invested £3.6 million since 2019.

This funding includes the NIHR and UKRI co-funded DecodeME study, a £3.2 million study into the genetic underpinning of ME. The study will analyse samples from 25,000 people with ME, to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. This study aims to increase our understanding of the disease, and therefore contribute to the research base on diagnostic tests and targeted treatments for ME.

In 2020, the NIHR, the Chief Scientist Office in Scotland, and the MRC also funded the James Lind Alliance Priority Setting Partnership for ME, facilitated by the charity Action for ME. The report sets out the top 10 research priorities for ME. These recommendations have been co-produced through a process led by a steering group of people living with ME, carers, and clinicians.

In the interim delivery plan on ME, the Department recognised that there has been a relatively low amount of biomedical research funded on ME, compared with disease burden. The NIHR and MRC welcome applications for further biomedical research into ME. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. In all disease areas, the amount of funding depends on the volume and quality of scientific activity.
 
@Adrian does the above response, especially the final paragraph below have any relevance to discussions in RWG?

"In the interim delivery plan on ME, the Department recognised that there has been a relatively low amount of biomedical research funded on ME, compared with disease burden. The NIHR and MRC welcome applications for further biomedical research into ME. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. In all disease areas, the amount of funding depends on the volume and quality of scientific activity."
 
Just the same old crap from the DHSC. It’s been telling us that the MRC, and more recently the NIHR, welcome applications but the amount of funding depends on the volume and quality of scientific activity for years. Whether or not the problem is the quantity and quality of applications, the fact is that this largely passive approach has failed for decades. The onus is therefore on the DHSC, NIHR and MRC to do something different to try to elicit more high quality proposals.

I have written to the DHSC via my MP many times asking for ring-fenced funding. Its response is always that ring-fencing is not usually practice, to which my response in more recent years has always been that as the government has announced minimum ring-fenced funding for Alzheimer’s, brain cancer and MND, so why not ME/CFS?

In the last response my MP received, the minister of state, Andrew Stephenson, wrote:

“It is not usual practice to ring-fence funds for expenditure on particular topics. Research proposals in all areas compete for the funding available and we welcome funding applications for research into any aspect of human health. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of funding depends on the volume and quality of scientific activity.”

In reply, I’ve asked my MP to ask the minister for health:

1) Does he acknowledge that ME/CFS research has been underfunded for more then 30 years?

2) If so, why should it not receive ring-fenced funding as governments have announced for other illnesses?

3) What is the criteria for illnesses to qualify for government ring-fenced funding?

I’m sure I’ll be fobbed off by the DHSC as I have been for 20+ years, but if enough people keep asking the same questions I hope that it might eventually make a difference.

My MP, Jeremy Quin, doesn’t submit publicly available written parliamentary questions but he has written to ministers and secretaries of state privately on my behalf whenever I’ve asked him (many times!)

If I get a helpful reply from the DHSC I will post it here. Otherwise, assume it’s the same old crap.

[edited typos]
 
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MEMarge said:
@Adrian does the above response, especially the final paragraph below have any relevance to discussions in RWG?

"In the interim delivery plan on ME, the Department recognised that there has been a relatively low amount of biomedical research funded on ME, compared with disease burden. The NIHR and MRC welcome applications for further biomedical research into ME. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. In all disease areas, the amount of funding depends on the volume and quality of scientific activity."
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To me the real issue is the low volume of applications. I hear they are very low. Some of this can be an expectation of bad reviewing processes but I see it as mainly a lack of researcher knowledge and therefore interest in ME. I believe that most involved in ME research have some personal experience of ME.

The highlight notices should help but the fact that they aren't is really significant and says something else needs to happen.
 
Adrian said:
To me the real issue is the low volume of applications. I hear they are very low. Some of this can be an expectation of bad reviewing processes but I see it as mainly a lack of researcher knowledge and therefore interest in ME. I believe that most involved in ME research have some personal experience of ME.

The highlight notices should help but the fact that they aren't is really significant and says something else needs to happen.
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Yes, exactly. They need to do something different to increase the quality and the quantity.

My feeling has always been that ring-fencing would help, not only because researchers would know the funds are there for their current applications but also because it would give them confidence that there will continue to be funds available if they want to stay in the ME/CFS field.

A potential downside of ring-fencing is that the quality could suffer if funders felt under pressure to spend the money that has been ring-fenced. To mitigate this risk it would be necessary to put safeguards in place to ensure minimum standards are met, and to make provision for funds to be carried over if sufficient high quality proposal are not met.

As Chris Ponting said on Channel 4 News the other day, ME/CFS genetics research is 20 years behind most other diseases. Why hadn’t there been a ME/CFS GWAS before now, as there has been for almost every other condition (although, admittedly not of them same quality as DecodeME)? Why did the MRC or NIHR not proactively seek applications for a GWAS?

I also wonder if there any other obvious types of study, like GWAS, for which applications could be proactively sought.

Hopefully, the results of DecodeME will point to other avenues of research and therefore an increase in high quality applications but I still wonder what more could and should be done now.
 
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Robert 1973 said:
My feeling has always been that ring-fencing would help, not only because researchers would know the funds are there for their current applications but also because it would give them confidence that there will continue to be funds available if they want to stay in the ME/CFS field.
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My feeling is ring fencing won't work We had an amount of ring fencing in 2011 with 5 or 6 projects funded and that didn't act to kick start research, I don't think those involved are doing ME research now. I think something much more active needs to be done to reach out to top researchers in adjacent/related fields and get them interested (and then have money available). But having someone/org explicitly funded to get the discussions and interest going seems important to me. Then to build a research community that can be self sustaining including supporting early career researchers.

Robert 1973 said:
As Chris Ponting said on Channel 4 News the other day, ME/CFS genetics research is 20 years behind most other diseases. Why hadn’t there been a ME/CFS GWAS before now, as there has been for almost every other condition (although, admittedly not of them same quality as DecodeME)? Why did the MRC or NIHR not proactively seek applications for a GWAS?
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It was a long time coming and the MRC strategy board funded it (rather than through standard funding routes) I remember talking to someone on the board saying that this seems the obvious route forward. The hope is that this will also create hypotheses to be tested as its hard to get funding for hypothesis generating research.
 
Adrian said:
My feeling is ring fencing won't work We had an amount of ring fencing in 2011 with 5 or 6 projects funded and that didn't act to kick start research, I don't think those involved are doing ME research now. I think something much more active needs to be done to reach out to top researchers in adjacent/related fields and get them interested (and then have money available). But having someone/org explicitly funded to get the discussions and interest going seems important to me. Then to build a research community that can be self sustaining including supporting early career researchers.
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I can’t remember the figure but the 2011 ring-fenced funds were nowhere near enough to have the desired effect IMO. My feeling is that at least £100 million ring-fenced funding would need to be announced in the first phase. That would signal that the government, MRC and NIHR are serious about long-term funding for high quality research.

I definitely agree about trying reach out to and engage top researchers from other fields, but I think that should be done in tandem with the above, and other measures.

£100 million is a drop in the ocean compared to the cost of ME to the Treasury. It’s bonkers how little has been invested trying to solve the problem to date.
 
Lord Hunt of Kings Heath Labour
To ask His Majesty's Government what assessment they have made of the extent to which the 2021 NICE guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been implemented (1) in general, and (2) in relation to the training health and social care professionals on how to employ the new recommendations, (a) establishing a UK-wide network of hospital-based ME/CFS specialist services, (b) making all NHS services accessible and capable of providing personalised ongoing care and support to those with ME/CFS, and (c) ensuring social care provision for ME/CFS is monitored and regularly reviewed.

Lord Markham The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
No formal assessment has been made of the extent to which the 2021 National Institute for Health and Care Excellence (NICE) guidance for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), has been implemented.

NHS England does not centrally commission services for ME. Services to support people living with ME are commissioned by integrated care boards (ICBs) to meet the needs of their local population, and are not reviewed or assessed by NHS England centrally. In October 2023, the British Association of Clinicians in ME published their ME/CFS National Services Survey 2023. This survey provides insight on the services being delivered for adults, and children and young people, living with ME. A copy of the survey is attached.

In relation to the training of health and social care professionals, it is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. The Department is working with NHS England to develop an e-learning course on ME for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. This has involved feedback and input from the ME Research Collaborative (MERC) Patient Advisory Group. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME.

The Department published My full reality: an interim delivery plan for ME/CFS in August 2023, which sets out a number of actions to improve the experiences and outcomes for people living with the condition, including better education of professionals and improvements to service provision. More information about the interim plan is available on the GOV.UK website, in an online only format.

Alongside the publication of the interim delivery plan, we ran a public consultation to build a picture of how well the plan meets the needs of the ME community, and to understand if there are any gaps where further action may be necessary. The Department is currently analysing over 3,000 responses to the consultation on the interim delivery plan on ME, and will publish a final delivery plan later this year.

In relation to the monitoring of social care provision for individuals with ME, the Department has made a landmark shift in how we hold local authorities to account for their adult social care duties, through a new Care Quality Commission (CQC) assessment. The CQC will examine how well local authorities deliver their Care Act duties, increasing transparency and accountability and, most importantly, driving improved outcomes for people, including those with ME, who draw on care and support. The CQC completed five pilot assessments and is now rolling out assessment to all local authorities.

BACME National Services Survey 2023 (pdf, 1537.0KB)
 
I suspect the government of extracting the michael - 3,000!

Women's Health Strategy: Call for Evidence - GOV.UK (www.gov.uk)

It took them 6 months to analyse responses from 100,000 individuals, and 436 organisations and individuals with expertise in the area. Why the inordinate delay?

Really not interested in what arm's arm's length organisations, not accountable to government have to say on the matter, particularly after listening to Lord Arbuthnot of Edrom's oral evidence during today's live stream of the Post Office Inquiry, something about a democratic deficit wasn't it?

This is a Government delivery plan.

Where is the equality impact assessment for the process?

What reason is there preventing the government from publishing an analysis of the responses received in a similar government Policy making process?

"For 14 weeks, from March to June 2021, the UK government sought views on women’s health issues and women’s experiences of the healthcare system in England.

We have now published the full analysis of this call for evidence in 2 separate reports. The first analytical report (released in December 2021) summarises feedback from nearly 100,000 individuals who responded to the ‘Women’s Health – Let’s talk about it’ survey component of the consultation. The second report (released in April 2022) summarises feedback from 436 individuals and organisations with expertise in women’s health. Both reports should be read together for a complete picture of the evidence generated.

The results have directly informed Our Vision for the Women’s Health Strategy for England as well as the full strategy, due to be published later this year.
 
One would expect the UK government to have the same sense of urgency if they really believed they were honouring both the letter and the spirit of Article 12 - UN Right to health, endorsed by the World Health Organisation. Afterall, it's not new as this fact sheet No.31 published 1 June 2008 demonstrates:

Fact Sheet No. 31: The Right to Health | OHCHR

Especially as this illness, even today is expressed as 'hysteria' which of course became 'neurasthenia' and 'Type D Personalities', (as I discovered today) as being the ones more prone to severity of illness. I can't imagine for one moment Florence Nightingale accepting that description.

It's the only time I've ever come across men with a long term health condition being described as 'hysterical'. Oh no wait, there's Gulf War Syndrome isn't there.

It would seem that at least one government on this planet is going to have to start taking these illnesses seriously, if only on a cost/benefits analysis as the bill of social security flowing from the Pandemic which, of course, is what the enormous rise in the number of people too ill to work really represents. NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal | Science for ME (s4me.info)

It seems a false economy to do anything else - we have been waiting 67 years afterall. Only this week Diabetes UK announced the 'artificial pancreas' News & Views | Diabetes UK I, for one, am not prepared to wait another 1000 years for the abuse to end and SOME sort of effective treatment. History of diabetes - Wikipedia
 
Cat Smith Chair, Petitions Committee, Chair, Petitions Committee
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to ensure hospitals follow the NICE guidelines on Myalgic encephalomyelitis or chronic fatigue syndrome.

Cat Smith Chair, Petitions Committee, Chair, Petitions Committee[/paste:font]
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to ensure hospitals develop treatment pathways for Myalgic encephalomyelitis or chronic fatigue syndrome patients at risk of starvation.

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the National Institute for Health and Care Excellence (NICE). The Department is working with NHS England to develop an e-learning course on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, for healthcare professionals, with the aim of supporting staff in providing better care and improving patient outcomes. This has involved feedback and input from the ME Research Collaborative Patient Advisory Group. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME. The NICE’s guidance NG206 states that people with ME should undertake a dietetic assessment by a dietitian with a special interest in ME, if they are losing weight and at risk of malnutrition.
 
And we trust the DHSC and NHS England to produce a workable, disinformation and spin-free document to educate Drs and other HCPs? When NHS England calls ME "Tiredness" and still promotes CBT as treatment -
3 years after NICE published.
 
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Seema Malhotra Shadow Minister (Education)
To ask the Secretary of State for Health and Social Care, whether her Department is taking steps to increase inpatient provision for patients with myalgic encephalomyelitis.

Seema Malhotra Shadow Minister (Education)[/paste:font]
To ask the Secretary of State for Health and Social Care, with reference to section 1.17 of the National Institute for Health and Care Excellence (NICE) guidelines entitled Myalgic encephalomyelitis (or encephalopathy) chronic fatigue syndrome: diagnosis and management, published on 29 October 2021, what steps her Department is taking to help ensure that hospital staff are aware of NICE guidelines for caring patients with very severe myalgic encephalomyelitis.

Seema Malhotra Shadow Minister (Education)[/paste:font]
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 11 March 2024 to Question 16630 on Chronic Fatigue Syndrome, when she plans to publish the final myalgic encephalomyelitis delivery plan.

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
The National Institute for Health and Care Excellence’s (NICE) guideline, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, published in October 2021, outlines the expectations for inpatient care for patients with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The guidance states that where possible, patients with ME should be provided with a single room, and that factors such as the level of lighting and sound should be taken into consideration, and necessary adjustments made.

It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services that meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.

The Department is working with NHS England to develop an e-learning course on ME for healthcare professionals, with the aim of supporting staff in providing better care and improving patient outcomes. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME.

We have finished consulting on My Full Reality, the cross-Government interim delivery plan on ME, which seeks to improve the experiences and outcomes of people living with this condition. We are in the process of analysing the results of the consultation. The views and experiences gathered through this consultation will be used to build a picture of how well the interim delivery plan identifies and meets the needs of the ME community, and to highlight any significant gaps where further action may be necessary. We will publish a summary of the consultation responses, which will inform the final delivery plan being published later this year, in due course.
 
Owen Thompson SNP Chief Whip
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to ensure myalgic encephalomyelitis receives a proportionate share of National Institute for Health and Care Research funding.

Owen Thompson SNP Chief Whip[/paste:font]
To ask the Secretary of State for Health and Social Care, if she will instruct the National Institute for Health and Care Research to increase the level of funding available for myalgic encephalomyelitis research.

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health including myalgic encephalomyelitis. These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all areas, the amount of NIHR funding depends on the volume and quality of scientific activity.
 
Navendu Mishra Labour, Stockport
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to help improve specialist services for patients diagnosed with myalgic encephalomyelitis.

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), services that meet the needs of their population, subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME and CFS diagnosis and management, published in October 2021.

In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey. This report provides insight into the services being delivered for adults, children, and young people with ME and CFS. The Department published My full reality: an interim delivery plan for ME/CFS in August 2023, which sets out a number of actions to improve the experiences and outcomes for people living with the condition, including better education of professionals and improvements to service provision.

Alongside the publication of the interim delivery plan, we ran a public consultation to build a picture of how well the interim plan meets the needs of the ME and CFS community, and to understand if there are any gaps where further action may be necessary. The Department is currently analysing over 3,000 responses to the consultation, and will publish a summary of the consultation responses in due course. Those consultation responses, along with continued close engagement with key stakeholders, will drive the development of the final cross-Government ME/CFS Delivery Plan, which will be published later this year.
 
None of this really takes into account the fact that the professional associations have declared their hostile intent and refusal to implement the guidelines, and that not a single clinic, let alone care board, has actually implemented it as intended, following through on that prior declared hostile intent.

When facts don't matter, no system can function. The purpose of a system is what it does, if a system is openly hostile to doing its job, then that's its purpose, officially. A hostility that has been openly declared and followed through.

But whatever thoughts and prayers. Just go on pretending that people are blatantly refusing to fulfil their duties, I'm sure it won't ever affect you or someone you love negatively.
 
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