UK House of Lords/ House of Commons Questions

Daisy Cooper Liberal Democrat Spokesperson (Health and Social Care), Deputy Leader, Liberal Democrats
To ask the Secretary of State for Health and Social Care, what progress her Department has made on the Interim Delivery Plan for ME/CFS.

• Tweet Share
• Hansard source(Citation: HC Deb, 20 May 2024, cW)

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
In August 2023, the Department published My Full Reality, a cross-Government interim delivery plan on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), which sets out a number of actions to improve the experiences and outcomes for people with the condition through an expansion of research, better education of professionals, improvements in attitudes towards the condition, and improvements to service provision.

Alongside the publication of the interim Delivery Plan, we ran a public consultation to gather the views and experiences of healthcare professionals, organisations, and individuals with lived experiences of ME/CFS. The aim of the consultation is to build a picture of how well the interim delivery plan identifies and meets the needs of the ME/CFS community, and to understand where there are any gaps where further action may be necessary.

The consultation received well over 3,000 highly detailed responses, which are in the process of being analysed. The consideration and analysis of these responses is progressing steadily, and we are on track to publish a summary of the consultation responses shortly. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the final delivery plan, which we aim to publish later this year.

 

Fabian Hamilton Labour, Leeds North East
To ask the Secretary of State for Health and Social Care, whether her Department (a) has and (b) plans to provide funding for new treatments for ME or chronic fatigue syndrome.

• Tweet Share
• Hansard source(Citation: HC Deb, 21 May 2024, cW)

Fabian Hamilton Labour, Leeds North East
To ask the Secretary of State for Health and Social Care, if she will make an assessment of the adequacy of NHS provision of specialist ME or chronic fatigue syndrome services; and if she will take steps to increase the number of clinicians who specialise in ME or chronic fatigue syndrome.

• Tweet Share
• Hansard source(Citation: HC Deb, 21 May 2024, cW)

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
The Department, through the National Institute for Health and Care Research (NIHR), provides funding for research projects which aim to understand the underlying causes of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and find new treatments for the condition. As part of this, the NIHR and the Medical Research Council have funded the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes, or an increased risk of developing the condition. By helping us to understand ME/CFS better, this research has the potential to lead to new treatments for the condition.

Integrated care boards (ICBs) are responsible for commissioning specialist ME/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 guidance on ME/CFS diagnosis and management, published in October 2021. In addition, 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/CFS.

 

Sonia Kumar Labour, Dudley
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve (a) diagnosis, (b) treatment and (c) awareness of Myalgic Encephalomyelitis (ME) in the NHS.

• Tweet Share
• Hansard source(Citation: HC Deb, 25 July 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
The Department, through the National Institute for Health and Care Research (NIHR), provides funding for research projects which aim to understand the underlying causes of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and find new treatments for the condition. For example, the NIHR, together with the Medical Research Council, have funded the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. By helping us to understand ME/CFS better, this research has the potential to lead to new treatments for the condition.

Integrated care boards (ICBs) are responsible for commissioning specialist ME/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/CFS diagnosis and management, published in October 2021.

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 to meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.

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/CFS.

The Department has been working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, to support staff to be able to provide better care and improve patient outcomes. This has involved feedback and input from patients. The Medical Schools Council will promote the NHS England e-learning package on ME/CFS to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME/CFS. A decision on next steps on ME/CFS at the national level will be taken in the coming weeks.

 

Rupa Huq Labour, Ealing Central and Acton
To ask the Secretary of State for Health and Social Care, what steps he plans to take to improve support for people with myalgic encephalomyelitis.

• Tweet Share
• Hansard source(Citation: HC Deb, 24 July 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/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/CFS diagnosis and management, published in October 2021.

The Department funds research into ME/CFS through the National Institute for Health and Care Research (NIHR). The NIHR, together with the Medical Research Council, is funding the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. A decision on the next steps for ME/CFS at the national level will be taken in the coming weeks.

 

Baroness Scott of Needham Market Deputy Chairman of Committees, Deputy Speaker (Lords)
To ask His Majesty's Government, further to the Written Statement by the Secretary of State for Health and Social Care on 12 May 2022 (HCWS23), what plans are in plans to publish the cross-Government delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome.

• Tweet Share
• Hansard source(Citation: HL Deb, 6 August 2024, cW)

Baroness Scott of Needham Market Deputy Chairman of Committees, Deputy Speaker (Lords)
To ask His Majesty's Government, further to the Written Statement by the Secretary of State for Health and Social Care on 12 May 2022 (HCWS23), whether the cross-Government delivery plan for myalgic encephalomyelitis (ME)/chronic fatigue syndrome will include provision for hospital treatment and full consideration of how to safely prevent malnutrition in very severe ME.

• Tweet Share
• Hansard source(Citation: HL Deb, 6 August 2024, cW)

Baroness Scott of Needham Market Deputy Chairman of Committees, Deputy Speaker (Lords)
To ask His Majesty's Government what assessment they have made of the percentage of the research budget allocated for myalgic encephalomyelitis and Long Covid, and whether they plan to increase this amount.

• Tweet Share
• Hansard source(Citation: HL Deb, 6 August 2024, cW)

Baroness Merron The Parliamentary Under-Secretary for Health and Social Care
A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. 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.

 

"Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council."



What are the other 9 ME research projects the NIHR funded in the last 5 years?




ME Research UK stated in 2023:

'With attention now turning to what the final version of the Interim Delivery Plan on ME/CFS will contain in light of comments received, including those from ME Research UK , showing the woeful lack of central funding for ME/CFS biomedical research over decades and (summarised) stated that

“The central issues facing biomedical research into ME/CFS are already well known, and have been for decades.

• There is no commitment to ring-fence dedicated funding for ME/CFS research, to reflect the disease’s prevalence and severity.
• 
  
• There are no strategies to keep established researchers in the field and to help them build capacity, or to encourage early career researchers to specialise in ME/CFS research.
• 
  
• The initiatives appear more about process than results.
• 
  
• The deliverables are weak.”

It is disappointing to find that fears that funds provided from the government for DecodeME and the Priority Setting Partnership, either directly or via grants to charities (not ME Research UK), may be the high-water mark of investment unless there is a radical change in attitude and approach.'

https://www.meresearch.org.uk/uk-parliamentary-question-on-me-cfs-funding/

.

 

Government commits to publishing the delivery plan! Comments Ring Fenced Funding for a condition is "not usual practice"
https://meassociation.org.uk/2024/0...publishing-the-final-delivery-plan-on-me-cfs/

https://questions-statements.parliament.uk/written-questions/detail/2024-07-29/HL454

 

I thought someone else would notice it but:

https://twitter.com/user/status/1821231001236099286


Maybe this is better in the news from the UK but it directly addresses the questions above about a planned release next winter. I guess "now" means "soon".

 

Luke Charters Labour, York Outer
To ask the Secretary of State for Health and Social Care, what steps his Department are taking to support (a) the Humber and North Yorkshire Integrated Care Board and (b) people diagnosed with myalgic encephalomyelitis.

• Tweet Share
• Hansard source(Citation: HC Deb, 5 September 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
NHS England is responsible for allocating funding to integrated care boards (ICBs), including the Humber and North Yorkshire ICB, which are in turn responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/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/CFS diagnosis and management, published in October 2021. The NICE guidelines provide recommendation on principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach involving access to a range of health and social care professionals based on needs.

The Department has funded the £3.2 million DecodeME study with the Medical Research Council to understand the causes and consequences of, and find treatments for, ME/CFS. This study aims to understand if there is a genetic component to the condition and, in doing so, increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.

A public consultation on the interim delivery plan for ME/CFS was run in 2023, and it is a priority of ours to publish the response to this consultation. Departmental officials are in the process of finalising a report summarising the responses. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

 

Caroline Voaden Liberal Democrat, South Devon
To ask the Secretary of State for Health and Social Care, what steps he is taking to support biomedical research into (a) long covid and (b) myalgic encephalomyelitis.

• Tweet Share
• Hansard source(Citation: HC Deb, 11 September 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for 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 long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). The NIHR and the Medical Research Council (MRC) are committed to funding high-quality research to understand the causes, consequences, and treatment of long COVID and ME/CFS, and are actively exploring next steps for research in these areas.

Over the last five years, the Government, through the NIHR and the MRC, has invested over £50 million into long COVID research through two specific research calls. The projects funded aim to improve our understanding of the diagnosis and underlying mechanisms of the disease, and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate clinical care.

The MRC has provided £4.15 million of ME/CFS research funding since 2013, including £3.19 million jointly awarded with the NIHR for the DecodeME project, which aims to find genetic risk factors of ME/CFS to better understand the disease and ultimately to find treatments. The NIHR has committed approximately £3.9 million of programme funding over the same period.

As findings emerge from current research, we encourage researchers to apply for funding to build on and develop the newly established infrastructure, partnerships, and research capabilities. Government research funders remain available to support long COVID and ME/CFS researchers in their applications for funding.

 

Ben Spencer Shadow Minister (Health and Social Care)
To ask the Secretary of State for Health and Social Care, whether he has had recent discussions with the National Institute for Health and Care Research on support for research into (a) care and (b) treatment for people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

• Tweet Share
• Hansard source(Citation: HC Deb, 16 October 2024, cW)

Andrew Gwynne 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.

 

There have been a number of questions raised in the House of Commons since 7 Oct, the day the Regulation 28 report preventing future deaths was issued. Sorry I don't know how to set them out like @Sly Saint for easy reading. Most are holding answers with one substantive answer being provided to Sharon Hodgson's question.

Find written questions and answers - Written questions, answers and statements - UK Parliament

 

yes sorry, I've found them in my email trash!

Ben Spencer Shadow Minister (Health and Social Care)
To ask the Secretary of State for Health and Social Care, whether he has had recent discussions with the National Institute for Health and Care Research on support for research into (a) care and (b) treatment for people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

• Tweet Share
• Hansard source(Citation: HC Deb, 16 October 2024, cW)

Andrew Gwynne 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.



Sharon Hodgson Labour, Washington and Gateshead South
To ask the Secretary of State for Health and Social Care, what plans he has to ensure that the 2021 NICE Guideline for ME/CFS is implemented.

• Tweet Share
• Hansard source(Citation: HC Deb, 16 October 2024, cW)

Sharon Hodgson Labour, Washington and Gateshead South
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the safety of NHS care for patients with (a) severe and (b) very severe ME.

• Tweet Share
• Hansard source(Citation: HC Deb, 16 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
The 2021 National Institute for Health and Care Excellence’s (NICE) guidelines on the diagnosis and management of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), provides recommendations on principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach with access to a range of health and social care professionals based on needs.

The NICE’s guidelines are not mandatory, but the Government does expect healthcare commissioners to take the guidelines fully into account in designing services to meet the needs of their local population, and to work towards their implementation over time.

No specific assessment has been made of the adequacy of the safety of National Health Service care for patients with severe and very severe ME/CFS, but there are steps that the Government is taking to improve care for patients with ME/CFS, including those with severe and very severe ME/CFS.

The Department has funded the £3.2 million DecodeME study with the Medical Research Council to understand the causes and consequences of, and find treatments for, ME/CFS. This study aims to understand if there is a genetic component to the condition and, in doing so, increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.

The public consultation on the interim delivery plan for ME/CFS was run in 2023. It has been a priority since July 2024 to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are in the process of finalising a report summarising the responses, for publication. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease, including those with severe and very severe ME/CFS.


Ben Spencer Shadow Minister (Health and Social Care)
To ask the Secretary of State for Health and Social Care, whether he has made an assessment of the implications for his policies for the (a) care and (b) treatment of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) of the report entitled Maeve Boothby O’Neill: Prevention of Future Deaths Report, published on 8 October 2024.

• Tweet Share
• Hansard source(Citation: HC Deb, 16 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
Our deepest sympathies go out to Maeve’s family and friends in this tragic case. Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks.

The Department has received a Prevention of Future Deaths (PFD) report, which we are currently reviewing. It is important that we learn the lessons from every PFD report, and we will consider the report carefully before responding appropriately.

We are committed to improving the care and support for all those affected by myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). It is a priority to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25.

 

That's where my email nearly ended up!

 

Ben Spencer Shadow Minister (Health and Social Care)
To ask the Secretary of State for Health and Social Care, whether he plans to produce a national myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) strategy.

• Tweet Share
• Hansard source(Citation: HC Deb, 17 October 2024, cW)

Andrew Gwynne 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.

Ben Spencer Shadow Minister (Health and Social Care)
To ask the Secretary of State for Health and Social Care, whether he has issued guidance to integrated care systems (ICS) on commissioning specialist care and treatment services for myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS); and whether he has made an assessment of the potential merits of requiring ICSs to commission minimum levels of those services.

• Tweet Share
• Hansard source(Citation: HC Deb, 17 October 2024, cW)

Andrew Gwynne 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.

Ben Spencer Shadow Minister (Health and Social Care)
To ask the Secretary of State for Health and Social Care, whether he has had discussions with the National Institute for Health and Care Excellence on reviewing guidance for the (a) diagnosis, (b) care and (b) treatment of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

• Tweet Share
• Hansard source(Citation: HC Deb, 17 October 2024, cW)

Karin Smyth Minister of State (Department of 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.

 

Here are mine.

Ben Spencer has tabled 6 questions on, ME or CFS. Referencing the illness properly, i.e. myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS), would have been the correct approach.

It is not the patients’ fault that the PACE trial researched CFS. If you click on the links attached the “(ME/CFS)” in his questions, this is what you are taken to Me - Wikipedia CFS - Wikipedia.

The urgency and sudden flurry of questions from Ben Spencer is no doubt due to the Regulation 28 PFD report. All the questions cover issues raised in Parliament many times before, and since, the beginning of 2021. They cover 6 areas:

• Maeve’s death and the Regulation 28 Prevention of Future Deaths (PFD) Report issued following Maeve’s Inquest.
• The NICE revision process and final publication of the revised NICE Guideline, Oct 2021,
• Lack of care provision for severe ME/CFS patients, a question covering both the previous Labour and last 14 years of Tory government terms of office,
• Research,
• The cross parliamentary ME/CFS delivery plan announced in May 2022.

Since the responses to the My Reality public consultation which closed the first week of Oct 2023 had not been published, either before or subsequent to the General Election, up to today’s date (and is the subject of my ongoing formal disability discrimination complaint) Ben Spencer knows the answer to this as well as the Government.​

• [his link not mine] and whether he has made an assessment of the potential merits of requiring ICSs to commission minimum levels of those services (obviously since the general election in July 2024.

One question which comes to my mind is what DHSC guidance have ever been issued on this in general, and specifically for severe ME/CFS since the Independent Working Group on CFS/ME (set up in 1998) provided it’s Report to the Chief Medical Officer which he published in 2002? WorkingGroupReport.pdf (meresearch.org.uk)​

In the question you highlight, he specifically asks whether the DHSC has had discussions with NICE on reviewing guidance for the (a) diagnosis, (b) care and (b) treatment of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). [his link not mine] I take that to refer to the ng206 since that’s the only one which NICE have issued specifically on ME/CFS, and which it is apparent the Royal Colleges are not following, as many questions have been raised since 2021 about this, illustrated in this thread.


In the Regulation 28 PFD, issued on 7 Oct and amended on 8 Oct with redactions of the names of some recipients Maeve Boothby O'Neill: Prevention of Future Deaths Report - Courts and Tribunals Judiciary, the Coroner raises 4 ‘Matters of Concern’ one of which is:

Dr Ben Spencer only addressed half of the Coroner’s concerns in his own question to the DHSC on this specific topic.

I can’t see why the entire Guideline which took years to produce would need a full revision to address this issue. It will be interesting to see whether the answer, which is awaited, will cover the Coroner’s reference to the ‘2017 guidance on Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition’, which Dr Ben Spencer omitted.

In any event, this should additionally be covered in the section on severe and very severe patients in the cross Parliamentary ME/CFS Delivery Plan.

Spoiler: Quick Reference Note

The Chief Medical Officer’s Report 2002, highlighted several key areas:

• Recognition and Diagnosis: Emphasized the importance of recognizing and diagnosing CFS/ME accurately.
• Service Provision: Addressed the need for better healthcare services and support for patients.
• Patient Experience: Collected and incorporated patient experiences to inform recommendations.
• Management and treatment: Provided guidance on managing and treating CFS/ME.

Sharpe M. The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help? Clin Med (Lond). 2002 Sep-Oct;2(5):427-9. doi: 10.7861/clinmedicine.2-5-427. PMID: 12448589; PMCID: PMC4953082.


The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help? - PubMed (nih.gov)

Link to a pdf of the full paper The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help?

ETA: Link to pdf of the full paper by Michael Sharpe in the 'Quick Reference Note'

 

One further thought @Trish I think I may have found what may be behind this phrase Ben Spencer used myalgic encephalomyelitis or chronic fatigue syndrome:

This paper

P. D. White, What Causes Prolonged Fatigue after Infectious Mononucleosis—and Does It Tell Us Anything about Chronic Fatigue Syndrome?, The Journal of Infectious Diseases, Volume 196, Issue 1, 1 July 2007, Pages 4–5, https://doi.org/10.1086/518615
What Causes Prolonged Fatigue after Infectious Mononucleosis—and Does It Tell Us Anything about Chronic Fatigue Syndrome? | The Journal of Infectious Diseases | Oxford Academic
​

was cited in this paper

Morris G, Maes M, Berk M, Puri BK. Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop? Metab Brain Dis. 2019 Apr;34(2):385-415. doi: 10.1007/s11011-019-0388-6. Epub 2019 Feb 13. PMID: 30758706; PMCID: PMC6428797.
Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

​

 

HOL

Questions for Short Debate for 21 October 2024
Baroness Scott of Needham Market to ask His Majesty's Government what assessment they have made of the current position regarding diagnosis and treatment of myalgic encephalomyelitis.

https://lordsbusiness.parliament.uk...57&sectionId=49&businessPaperDate=2024-10-21#

(note: no further information at link)