Postural Tachycardia Syndrome debate (link to The ME Association’s leaflet below)

Postural Tachycardia Syndrome Hansard text debate available to download
Volume 773: debated on Tuesday 14 October 2025
 
ME Research UK give a detailed explanation on this recent debate
Westminster debate on PoTS
21 October 2025
Labour MP for Lancaster and  Wyre, Cat Smith, led the Westminster debate on postural orthostatic tachycardia syndrome (PoTS) emphasising that PoTS is not a rare disease, yet individuals with PoTS are “falling through the cracks” of a healthcare system unprepared to recognise or support them. Drawing on her own experience and those of constituents across the UK, she called for urgent reform in diagnosis, treatment, and care pathways for people with PoTS. Minister Ashley Dalton responded during the session that lasted around half an hour.
Overview of Minister Ashley Dalton’s response, including  -
1. Diagnostic delays and disbelief
2. Shortage of expertise and overwhelmed services
3. Systemic and structural failings
4. Gender health gap
5. Calls for government action
 
At the beginning of Cat Smith’s speech she took several interventions from MPs, representing constituents across the UK, who also highlighted how important raising the issue was.
 
Key themes from MP Interventions
1. Diagnosis delays and misdiagnosis
2. Need for national clinical guidelines and care pathways
3. Awareness and training for medical professionals
4. Impact on individuals and families
 
Overview of Minister Ashley Dalton’s response
Minister for Public Health and Prevention, Ashley Dalton, began by congratulating Cat Smith MP for “bringing this very important issue forward” and praised her passionate advocacy stemming from personal experience.
 
What could this mean for patients and campaigners?
The Minister’s response clearly recognised the daily struggles of people with PoTS and the systemic barriers they face. However, it did not announce any new funding, policy changes, or immediate interventions for overstretched clinics. Responsibility was largely deferred to local ICBs and future research outcomes.
In short, the response provided welcome recognition but limited action - a positive start in tone, but not yet the decisive, coordinated strategy that advocates seem to be asking for.
 
See the ME Research UK detailed explanation on this recent Westminster debate on PoTS
21 October 2025
 
 
The ME Association’s Postural Orthostatic Tachycardia Syndrome (PoTS) downloadable leaflet.
We explain PoTS, why it affects some people with ME/CFS (and Long Covid) and how it can be diagnosed and treated. You might also like to review the NICE Guideline on ME/CFS.
 
 
MEA report PoTS and long Covid including information for people with ME/CFS
December 2021
Dr Charles Shepherd, Honorary Medical for the ME Association comments on the following paper; Autonomic dysfunction post-acute COVID-19 infection (Desai et al, Nov 2021)
This new paper from an American research group provides further evidence of dysfunction of the autonomic nervous system (ANS) in Long Covid -  in particular, the presence of Postural Orthostatic Tachycardia Syndrome (PoTS) in a significant proportion of people with Long Covid
 
Much of the information on management is also applicable to PoTS where it occurs in ME/CFS. 
ANS dysfunction is very common in ME/CFS and we have been pointing out the important overlap involving this symptom between ME/CFS and Long Covid for well over a year.
The MEA information leaflet on PoTS covers all aspects of PoTS in relation to ME/CFS:
Postural Orthostatic Tachycardia Syndrome (PoTS)
PoTS UK is a medical charity that can provide more detailed information and has a list of NHS specialists:  PoTS UK Website
Plus Dr Shepherd’s thoughts.


•  Coronavirus (COVID 19)  •  Government U.K.  •  M.E. Association  •  MERUK  •  MP  •  N.I.C.E.  •  Parliament U.K. •  Post COVID Syndrome (Long COVID)  •  Research 

DecodeME  - The world's largest ME/CFS study.  The study should help us understand the disease and ultimately find treatments.  DecodeME aims to find genetic causes of why people become ill with Myalgic Encephalomyelitis (ME)  / Chronic Fatigue Syndrome (CFS).
 
 
The Worcestershire M.E. Social Group received a recent DecodeME newsletter, with initial DNA results.

We are delighted to share an important update on the DecodeME study.  The initial DNA analysis is now complete, and we have made some exciting discoveries.  Our results show that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. These findings confirm that genes contribute to someone’s chances of developing ME/CFS. 
 
Eight genetic signals have been identified that are much more common in people with ME/CFS than the general population. The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease.   The discoveries open the door for scientists to explore what’s going wrong in ME/CFS at a molecular level and are a major step forward in ME/CFS research.
 
Find out more about the results 

• Read more about our findings in our announcement blog 
• Read our FAQs on the initial results  
• Register for our upcoming webinar, where you will hear more about the results from the DecodeME management team, and will have the opportunity to ask questions  
• Find the scientific preprint paper here 
• Learn the science behind the findings. 

 
This progress has only been possible thanks to everyone who took part in DecodeME.
We are extremely grateful for your continued support.  
Warmest wishes, The DecodeME Team

Action for ME (AfME) announce
DecodeME initial DNA results announced
6 August 2025
The world's largest ME/CFS research study, DecodeME, has released the initial DNA results, following the initial analysis of 15,579 DNA samples!
 
What have they found?   Your genes contribute to your chances of developing ME/CFS.  The initial analysis has found that people with a diagnosis of ME/CFS have significant genetic differences in their DNA compared to the general population. These differences exist across the genome, and do not impact just one gene.
 
Eight genetic signals have been identified.  These findings reflected causes, rather than effects, of ME/CFS because DNA does not change with ME/CFS onset.  The signals discovered are involved in the immune and the nervous systems, pointing to immunological and neurological causes.  At least two of these signals relate to the body's response to infection, while others point to the nervous system, one of which has previously been found in other research, in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.
 
Messages from the DecodeME team (included)
Andy Devereux-Cooke, DecodeME co-investigator (Patient and Public Involvement), DecodeME management team
Sonya Chowdhury, Action for ME Chief Executive, DecodeME management team
Professor Chris Ponting, DecodeME lead investigator, Edinburgh University
 
What's next?
Join the DecodeME team for a webinar on Thursday 14 August, where they will explain the initial results in more detail and answer your questions!
The DecodeME will continue to analyse their rich dataset and further findings will be published as soon as they become available.  Other researchers will also be encouraged to use the DecodeME dataset so they can build on these important findings.  Thank you so much to the tens of thousands of people affected by ME/CFS who helped make this groundbreaking research possible.
 
 
The ME Association publicises David Tuller’s interview with Prof Chris Ponting
David Tuller interviews Prof Chris Ponting about Decode ME Results.
August 11, 2025
David Tuller, DrPh, has recorded an interview with Prof Chris Ponting, lead researcher for Decode ME, which they have published on YouTube. In the interview, they cover how the project came about, the results of the study, and next steps for research into ME/CFS. 
Watch the video: Interview with Professor Chris Ponting about the DecodeME results.
 
 
ME Research UK give explanations.
DeCodeME - Initial Results Published
6 August 2025
Initial results from DecodeME’s genetic study have been released.
 
The study is led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit, University of Edinburgh, and was funded by the Medical Research Council and the National Institute for Health Research.
DecodeME is a genome-wide association study (or GWAS) which aims to uncover some of the biological roots of ME/CFS. Examining DNA is fundamental as DNA remains unchanged by disease and so any DNA differences linked to the disease must be a cause of disease, not an effect. A GWAS is a relatively new technique that focuses on small differences in DNA between people. Identifying differences between people with ME/CFS and healthy controls (from UK biobank) would be a clue to what is going wrong in people with ME/CFS at a biological level. Specifically, it should help identify genes, biological molecules and types of cells that probably play a part in causing ME/CFS. DecodeME, compared the DNA of 15,579 people with ME/CFS with the DNA of 259,909 people without ME/CFS, all of European descent.
 
What are the Initial Findings,  Our findings suggest that both immunological and neurological processes are involved in the genetic risk of ME/CFS.  Abstract of Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome
 
Your genes contribute to your chances of developing ME/CFS.

• People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population. These lie in many places across the genome, and do not impact just one gene.
• Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS.
• The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease.
• At least two of the signals relate to the body’s response to infection. Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.

 
We found that people with ME/CFS are more likely to carry certain DNA differences in eight regions of their genome, and so these variants tell us about possible biological causes of ME/CFS. However, as these differences are also often found in people without ME/CFS they cannot cleanly separate who is at risk and who is not, and therefore do not provide a definitive test. Most of these regions contain several genes. Our methods did not allow us to conclusively locate the ones most relevant to ME/CFS in each region, but public data allowed us to pick out the most likely ones. Three of the most likely genes produce proteins that respond to an infection. Another likely gene is related to chronic pain. None are related to depression or anxiety. We found nothing to explain why more females than males get ME/CFS. Overall, DecodeME shows that ME/CFS is partly caused by genes related to the immune and nervous systems. Lay Summary of pre-print
 
A pre-print paper has been released and will be submitted for peer review in the normal way and so the fimalised and published paper is wont to change over time.   As Prof Ponting said in the Financial Times highly targetted studies are now needed to understand how the 8 identified signals are linked to ME/CFS.
 
As these changes occur mainly in the nervous and immune systems, it accords with the experiences of people with ME/CFS and research thought, namely that people with ME/CFS may struggle to clear infections and experience ongoing symptoms of pain, fatigue and illness from which other people recover. One such gene, OLFM4, codes for a protein called olfactomedin-4 that is involved in the body’s antimicrobial responses. Another, ZNFX1, is associated with responses to RNA viruses. A third highlighted gene, CA10, has been linked to chronic pain. A fourth, BXL4 (crucial for keeping mitochondria (cell batteries) functioning correctly) is identified as being under-expressed in some people with ME/CFS.
 
However, the study did not explain the genetic predisposition of women for ME/CFS but the team has, reportedly, yet to analyse the X and Y sex chromosomes. Further, the initial results do not shed light on the overlap between ME/CFS and Long COVID. As Professor Ponting reportedly stated “It’s very clear that the symptomology between long Covid and ME is highly similar.. Not for everyone but there are substantial similarities but as a geneticist the key question for me is are there overlapping genetic factors, and we haven’t found that in DeCode ME with the methods that we’ve employed.” [NB - the qualification ‘… with the methods that we’ve employed’] and continued (according to The Guardian) “One of the key things we’re doing is enabling others to use their different approaches to ask and answer the same question.”
 
What Next?These extraordinary results speak the language of people with ME/CFS, often recounting people’s ME/CFS symptoms. DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research. With our participants we have built an extraordinarily rich DecodeME data set, to which we continue to offer data access. We especially welcome researchers whose work is relevant to the eight signals we have identified, and who could bring their expertise to bear in highly targeted studies that would produce further ME/CFS insights and ultimately treatments. Prof Chris Ponting DecodeME will hold a webinar on Thursday 14th August, where the results will be explained further but clear that the identification of 43 protein-coding genes (of which 29 looked especially promising) is a major advance in debunking the claims of a psychosocial basis of ME/CFS and also targetting research efforts. In particular, the findings around the immune system-related gene called RABGAP1L as a probable contributor to ME/CFS risk fits with the testimony of most people with the disease, who say that an initial infection, which often seemed mild, preceded the onset of their symptoms. Links with FBXL4 (mitochondria function) will also, surely, be an area to folllow-up.
It is already known that the NIH and MRC are pinning high hopes on the results as the ME/CFS Delivery Plan makes specific mention of building on DecodeME even though the results were not made public until 6th August 2025.
 
In particular, the July 2025 Delivery Plan narrated that

1. The MRC had awarded £845,000 to PRIME, a new partnership award that aims to build a solid foundation for a permanent, enabling infrastructure for ME/CFS biomedical research by building on previous investment in the DecodeME study.
2. The Department of Heath and Social Care, NIHR and MRC will host a showcase event later in 2025 for post-viral condition research (including ME/CFS) to discuss recent evidence, including the DeCodeME results.
3. In extending DeCodeME funding in 2024, the NIHR ‘anticipate that DecodeME will empower future research by revealing genetic risk factors and facilitating future studies through the provision of an open-source data and sample base.’

 
Press Coverage

• Channel 4 news video – ME linked to your genetics – early study indicates via YouTube
• All 4 news – ME linked to your genetics – early study indicates
• Science – Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
• Daily Telegraph (paywall) – ME is a real illness, genetic study shows
• Financial Times (paywall) – Chronic fatigue patients have different genes, study finds
• The Standard – People with ME have key genetic differences to other people, study finds
• The Guardian – Scientists find link between genes and ME/chronic fatigue syndrome
• Daily Express – Groundbreaking genetic study sheds new light on causes of ME and chronic fatigue syndrome
• New Scientist – Key genetic differences found in people with chronic fatigue syndrome
• Daily Mail – Scientists FINALLY crack the mystery of chronic fatigue syndrome – major breakthrough reveals cause, sparks new hope for effective

• treatment
• Reuters – UK scientists find genes linked with chronic fatigue syndrome

 
 
The Guardian’s Science editor’s article  -
Scientists find link between genes and ME/chronic fatigue syndrome, 
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness.  Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community.
 
Plus, the ME Association (MEA) give a summary and extracts from the Guardian article.
The Guardian: Scientists find link between genes and ME/CFS
August 7, 2025
“These provide the first robust evidence for genetic contributions to ME,” Ponting said.  “There are many genetic variants that apply across the genome that predispose people to be diagnosed with ME.”  Ian Sample, The Guardian
Summary  -  On the 6th of August, 2025, DecodeME published the pre-print of their DNA Study, which identified eight genetic signals which were different in those with ME/CFS to those without. You can read more about their findings with a summary from Dr Charles Shepherd, here.
The Guardian, alongside other major media outlets, have written about the findings of this pre-print paper, as below.
The MEA also list, ‘Further Media Coverage’.

•  Action for ME  •  DecodeME 
•  M.E. Association  •  MERUK 
•  National Newspapers  •  Post COVID Syndrome (Long COVID)  
•  Research 

Final Delivery Plan on ME/CFS published by Dept of Health & Social Care (DHSC) on 22 July 2025.
Sir Sajid Javid (MP for Bromsgrove from 2010 to 2024), as Secretary of State for Health and Social Care, announced the development of the National Delivery Plan on ME/CFS  for England when he lead a Westminster Hall debate in the Houses of Parliament on Wednesday 1 May 2024.
 
Channel 4 News’ report  ME Delivery Plan: will it make a difference?,
 
After years in the making and numerous delays, the government has finally set out a plan in England to help people with ME, a neurological disease with various debilitating symptoms, which affects over 400,000 people in the UK.
Many patients feel like they’ve been ignored, dismissed and stigmatised for too long and that this plan might finally be a formal recognition of this. But with little funding allocated, does the plan go far enough?
 
This report included a comment from Sir Sajid Javid:
The Delivery Plan was first commissioned back in 2022 by the Health Secretary at the time, Sajid Javid, who had a mixed reaction to today’s announcement:
“It’s certainly raising awareness but there’s no dedicated ring-fenced funding,” he told Channel 4 News.
 
The government told us that although no additional funding is explicitly attached to the delivery plan, that doesn’t mean funding won’t be secured in future spending reviews or that those with ME won’t benefit from investment in other health and care initiatives.
So little in the way of funding, but something in the way of recognition.
 
Reaction
The reaction to the plan so far from advocacy groups has ranged from disappointed, to woefully inadequate.  And for a group of people that have felt unheard for so long, warm words of recognition may feel like scant comfort.
The Minister for Public Health and Prevention, Ashley Dalton, said:
“Today’s plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff. We will ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in our 10 Year Health Plan.”
 
 
ME Research UK’s announcement following the Delivery Plan publication
Delivery Plan for ME/CFS Published 
22 July 2025
UK government on 22nd July 2025, a few days before parliament rises for the summer recess has published its Delivery Plan for ME/CFS. The 3 plus year process covering research, living with ME/CFS and attitudes and education.
 
In the Press Release unfortunately entitled ‘Boost in support for patients with chronic fatigue syndrome or ME’ the government lays out its views and actions as it aims to ‘Better care for patients living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, with plans to invest in research and offer closer to home.’
 
As the Release states (edited) -
The government has committed to changing attitudes and transforming care for patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/ CFS).
The condition affects approximately 390,000 people in the UK, causing debilitating fatigue, sleep problems and difficulties with thinking, concentration and memory. The impact of this condition varies between cases, but severe ME/CFS, which is thought to affect a quarter of those diagnosed, leave patients housebound or unable to work.
The plan published today provides the foundations for significant improvements in all key areas that affect people living with ME/CFS in England, many of whom currently struggle to access appropriate care tailored to their complex condition.
 
As a priority, the plan will introduce new training for NHS healthcare professionals, featuring up-to-date learning resources to increase understand and ensure signs aren’t missed. This will help combat the stigma faced by people living with ME/CFS, which stems from a lack of awareness about the condition.
The rollout of neighbourhood health services as set out in the government’s 10 Year Health Plan will also see ME/CFS patients able to access care closer to home, with specially-trained staff able to support those with complex needs.
 
Minister for Public Health and Prevention, Ashley Dalton, said:  
ME/CFS is a debilitating illness that can severely limit patients’ ability to participate in everyday activities, maintain employment, or enjoy family and social life.  
Today’s plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff.
And through our neighbourhood health services, we will ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in our 10 Year Health Plan.
Our Plan for Change is transforming how patients experience care and this plan represents a comprehensive approach to addressing the long-standing gaps in care and support for people with these conditions, with patient access to appropriate care at its heart.
 
The plan includes increased funding for research, awarded through the National Institute for Health and Care Research, into how existing medicines can be used to for ME/CFS. This initiative aims to give patients access to a wider range of potential treatments.
It will also address the specific needs of children and young people, ensuring they receive appropriate and timely support in education settings.  
Recognising that ME/CFS affects people’s ability to work, the plan includes wider government initiatives to address issues with benefit assessment processes and provide support to help patients with long-term conditions and disabilities find and maintain meaningful employment where possible.  
Offering care closer to home forms part of the government’s 10 Year Health Plan to rebuild the NHS, putting patients’ needs first and delivering effective, accessible treatment. 
The government will continue to work with stakeholders and build on the foundations of actions in the Final Delivery Plan well beyond its publication, reaffirming our commitment to ongoing development and improvement. This all forms part of the government’s Plan for Change to build an NHS fit for the future and one which offers the highest-quality, personalised care.
 
Ministerial letter
To coincide with the press release, Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention, issued a letter which acknowledged that “People living with ME/CFS often face stigma and misunderstanding, stemming from a lack of awareness and education about the condition. This lack of awareness and understanding can significantly impact the quality and availability of services and support for those affected.”
 
Press Coverage

• itv x – Government pledges to ‘transform care’ for people with ME
• The Independent – Woman’s death exposes need for ME care reforms
• The Independent – ME care reforms promised after woman’s tragic death
• BBC Breakfast – iplayer (1.13.20 to 1.26.11)
• The Times (paywall) – Doctors to be trained on ME in NHS plan to transform care
• The Times (paywall) – My daughter died from ME. This new plan fails her and others like her
• Pulse – GPs to support delivery of ME/CFS care under new NHS plan
• Channel 4 – ME Delivery Plan: will it make a difference?
• Healthcare Management – NHS professionals to be trained on ME and chronic fatigue syndrome
• The Star – What is ME and the symptoms of chronic fatigue syndrome as government announces new NHS care plan for patients
• Medscape UK – After a Long Delay, ME/CFS Strategy Finally Arrives
• BBC Radio Scotland – iplayer (1.38.32 to 1.53.00)
• 5 Live Breakfast
• Times Radio – interview with Sean O’Neill
• BBC World at One

 
 
 
Department of Health and Social Care Policy Paper
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS):
the final delivery plan
Published 22 July 2025
 
Ministerial foreword
 
I am delighted to publish this final cross-government delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which while led by the Department of Health and Social Care (DHSC), has been developed in close partnership with the Department for Education (DfE), the Department for Work and Pensions (DWP) and NHS England, as well as, crucially, people with ME/CFS, carers, health and care professionals, researchers and research funders, charities and patient groups, and other interested organisations and individuals. 
I would like to thank everyone involved to date for their time and commitment to this vitally important work. I would particularly like to thank the members of the cross-sector Task and Finish Group that met 4 times between January and April 2025. As with any government plan or strategy, we have not been able to include every ask of that group in the final delivery plan, which must of course reflect what is practically feasible and financially viable and affordable, especially within the challenging current fiscal climate. However, the views of Task and Finish Group members have been very much considered alongside those received in response to the earlier consultation on the interim delivery plan. 
 
I recognise that care for people with ME/CFS has varied widely and, in the worst cases, has left some people feeling that their illness is not recognised by the health and care system. I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems and I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events. There are also inequalities in service provision that need to be addressed. We know that more research, better services and a better understanding of the condition all have the potential to make a huge difference to the quality of life of people with ME/CFS, whether that be those with symptoms on the milder end of the spectrum or those with very severe ME/CFS, and everyone in between. This final delivery plan marks an important milestone on the continuing journey to achieving those 3 high-level ambitions.
 
I know that the condition continues to blight the lives of so many children and adults across the country. In fact, the latest research findings recently concluded that the prevalence of people with ME/CFS in the UK may be as high as around 390,000[footnote 1] (or 0.6% of the population). The actions set out in this final delivery plan are intended not only to support the government’s health mission but also our growth mission, and these figures make a stark case for change on both fronts.
The interim delivery plan set out the problems to be addressed and draft actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision. I was pleased to see that the public consultation on that interim plan attracted over 3,000 responses, which have helped us to firm up and expand on the number and/or ambition of the proposed actions I expect the final delivery plan to deliver in the months and years ahead. In some areas, significant progress has already been possible between publication of the interim and final delivery plans. For example, e-learning modules on ME/CFS for healthcare providers and the general public have been developed, and the DecodeME study providing a genetic resource to better understand ME/CFS and stimulate future research has had its funding extended to enable the research aims to be completed, and I thank those involved.
I know that people with ME/CFS, their families and carers have waited a long time for a new national delivery plan - some would say too long - and I was very keen that we published it now, on the back of the recently published 10 Year Health Plan, which sets out our vision for the NHS of the future, so that we and partners can start to turn much needed actions into practice. I acknowledge that some of the actions we set out in this final delivery plan will require further exploration, scoping and discussion post-publication, but I and the department, as well as other parts of government and the NHS, are happy to be held to account by the ME/CFS community, including those with lived experience, to ensure that we make progress against every action. Publication of this plan in no way marks the end of our journey. In fact, my view is that the real work, which we look forward to doing collaboratively with stakeholders, starts post-publication.
 
This final delivery plan covers the population of England. However, I know that the Scottish Government, the Welsh Government and the Northern Ireland Executive have all carefully considered the consultation responses on the interim delivery plan from their residents and what they have heard at the Task and Finish Group meetings, and the implications for local policy in the devolved nations.
 
I recognise that there are some overlaps - for example, in symptoms and/or interventions - between ME/CFS and some other long-term conditions like long COVID, postural orthostatic tachycardia syndrome (PoTS) and Ehlers-Danlos syndrome. It should be noted that, while we are very happy to explore overlaps and synergies with related conditions as the plan is implemented, we have maintained our commitment to focusing this plan only on ME/CFS.
I look forward to continued collaboration as we strive to bring about real and positive change for people with ME/CFS.
 
Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention.
 
The following sections are detailed in the Policy Paper-
Summary;  Research summary;  Attitudes and education summary;  Living with ME/CFS summary;  After publication of the FDP;  Research;  Progress since publication of the IDP;  Exploring links with other post-acute infection condition;, Investment in research into ME/CFS and other post-acute infection condition;,  Encouraging further research into ME/CFS; Maximising value for ME/CFS research from research infrastructure;   Patient involvement ;  New investmen New funding opportunity:  evaluating medicines and other interventions for post-acute infection conditions, Monitoring progress and delivering impact,  Attitudes and education, Living with ME/CFS, Quality of life,  Support for children and young people with ME/CFS;  Provision of health services;  Provision of adult social care;  Provision of welfare support; Provision of employment support;  Agreed actions, Research;  Attitudes and education,  Living with ME/CFS,
 
Plus the Next steps,
The publication of this FDP marks an important milestone that provides the foundations for improvements in all important areas that affect people with ME/CFS. We will monitor the actions, and the DHSC secretariat will continue to engage with the Task and Finish Group in an appropriate form as required, to assess progress towards existing actions and to agree further actions where required. The Task and Finish Group includes representatives from ME/CFS charities, people with lived experience and those responsible for actions in the FDP, including government departments, arm’s-length bodies and professional organisations.
A new health services sub-group will be created to focus on improving care for those with ME/CFS. Appropriate and timely care for people with ME/CFS on all parts of the severity spectrum must improve. This FDP provides a framework for a sustainable approach which will ensure consistent and reliable care for all people with ME/CFS. We will continue to work with stakeholders across government, the NHS and beyond to progress the agreed actions set out in this plan with the aim of raising awareness and promoting understanding of ME/CFS across various sectors. We will also continue to actively engage with the All-Party Parliamentary Group on ME and collaborate with the 3 devolved UK nations, which participated in the development of this FDP.
 
 
Further announcements following publication of the Government’s Delivery Plan on ME/CFS
 
 
The ME Association’s statement on the Government’s Delivery Plan on ME/CFS
July 22, 2025
The Government’s delivery plan on ME/CFS is aiming to boost research, improve attitudes and education, and enhance the lives of people living with ME/CFS.
 
 
The 25% M.E. Group’s statement
Posted on July 22, 2025
On 22 July 2025, the UK Government released its Final Delivery Plan for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), marking a significant milestone in improving care, support, and research for the…
 
 
Action for ME (AfME) announces
DHSC publishes the Final Delivery Plan on ME/CFS
22 July 2025
The Department of Health & Social Care (DHSC) has published the Final Delivery Plan on ME/CFS.
The Plan’s release is an important step towards recognising the scale and seriousness of the condition and we welcome the Plan and the intent behind it.
Whilst there are elements of the Plan that will have a positive impact, it simply does not go far enough to ensure that its desired outcomes will be achieved. In particular, the Plan lacks a strategic approach to research investment, ambition, and accountability structures.
 
 
The British Association of Clinicians in ME/CFS (BACME) welcomes publication of the DHSC ME/CFS Delivery Plan on 22 July 2025. Provision of care closer to home, improving training for all health and social care staff, expanded NHS ME/CFS specialist services and funded opportunities for research into ME/CFS are much needed.
BACME shares the concerns of the charities working with people living with ME/CFS highlighting that this Delivery Plan does not go far enough. It does not offer sufficient urgency, funding or resources to realise the ambitions of clinicians and researchers working in this medical field.
 
The ME Association (MEA) publicises :
David Tuller interviews Dr Charles Shepherd about the new ME/CFS Delivery Plan
July 29, 2025
David Tuller, DrPh, has interviewed Dr Charles Shepherd, MEA Honorary Medical Advisor, about the recent publication of the new ME/CFS Delivery Plan.

•  25% M.E. Group  •  Action for ME 
•  B.B.C.  •  Government U.K. 
•  M.E. Association  •  MERUK 
•  MP  •  National Newspapers 
•  N.H.S.  •  Parliament U.K. 

World ME Alliance - World ME Day 2025.
ME Awareness Week 2025, 12 - 18 May.
12 May has been ME/CFS Day since 1992,.
 
ME Research UK (MERUK) announce US states to mark International ME Awareness Day
13 February 2025
Since 1992 12th May has been recognised as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day.
On this important day, organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases by raising public awareness.  In fact, 12th May is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). The CIND illnesses include Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).
 
Two US states have legislated this year to mark the date.  The New York State Senate has passed a resolution marking “the 33rd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York”.  In addition, the State of Alaska has passed “An Act establishing May 12 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Day of Recognition” and that 12th May may be observed by suitable observances and exercises by civic groups and the public.
 
 
World ME Alliance
Country-by-Country Highlights for World ME Day 2025.
Post author:World ME Alliance
Post published:8 May 2025
Around the world, individuals, organisations and communities are coming together in to mark World ME Day 2025.  Below is a breakdown of national events and campaigns happening by country, highlighting the wide range of efforts to raise awareness, push for better care, and demand action for people living with Myalgic Encephalomyelitis (ME).  From media takeovers to political action, here are just some of the national activities taking place in 2025.  Article includes information from - France, Belgium, New Zealand, Portugal, United Kingdom, Scotland, Northern Ireland, Germany, Australia, United States, Mexico, Brazil, Czechia.
 
 
World ME Alliance explain Six Myths World ME Day 2025: Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME)  and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME).  Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating illness that affects millions of people worldwide. However, persistent myths and misunderstandings hinder its recognition and treatment.  This year we are calling on you to help debunk six of the most common myths about ME and share the medical facts everyone should know.
 
1. Myth: ME is a mental health condition.
     Fact: ME is a biological illness that disrupts the metabolism and impairs the brain, immune system and autonomic nervous system.
It often starts after an infection, common flu or COVID. Millions of people worldwide have ME, with about 75% of them being women. Many struggle with daily activities, up to 75% cannot work or attend school, and at least 25% of patients are so severely affected that they are housebound or bedridden.
 
2.  Myth: ME is just about feeling tired
     Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) - an extreme worsening of symptoms after even minor physical or mental exertion.
This can trigger a “crash” lasting for days or longer, making even basic activities difficult or impossible. Attempting to push through can significantly worsen symptoms and may lead to long-term deterioration.  For those with severe ME, even minimal exertion -such as sitting up, light conversation, or sensory stimuli like sound and light - can be intolerable, leaving them extremely disabled and dependent on full-time care.
 
3.  Myth: You can exercise your way to recovery from ME.
     Fact:  Exercise can be dangerous for people with ME.
Unlike other chronic conditions where exercise can help, structured exercise programs often make ME symptoms worse as patients end up pushing themselves too far.
In the past, graded exercise therapy (GET) was recommended, but after reviewing the evidence, health organisations like NICE in the UK and the CDC in the US have warned against it. Instead, people with ME are encouraged to pace themselves—balancing activity and rest—to avoid deterioration.
 
4.  Myth: Only certain groups of people can develop ME. 
     Fact: ME affects people of all races, genders, ages, and socioeconomic backgrounds. 
The misconception that ME primarily affects certain groups stems from disparities in diagnosis and healthcare access. While about 75% of those affected are women, ME can affect anyone, regardless of age, gender, race or income. In addition, marginalized communities face more challenges getting diagnosed and treated due to bias in the medical system and lack of awareness. 
 
5. Myth: Long COVID is entirely different from ME.
     Fact: Many Long COVID patients have symptoms that match ME.
Since the COVID-19 pandemic, researchers have found that a large number of people with persistent Long COVID meet the diagnostic criteria for ME. Many experience PEM, the core symptom of ME. Studies highlight the biological similarities between the two diseases, reinforcing the need for integrated research and clinical approaches for these two conditions as well as other post-infectious syndromes.
 
6. Myth: Doctors cannot help people with ME.
     Fact:  Doctors can help people manage ME symptoms.
While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing to prevent PEM. Treating co-existing conditions and providing medications to address sleep disturbances, pain, and cardiac and neurological issues can offer significant relief. Offering at-home visits, online consultations and palliative care can make a big difference to someone suffering from Severe ME.
 
 
ME Research UK announce -
Scottish Parliament Motion to mark International ME Awareness Day
23 April 2025
That the Parliament marks International ME Awareness Day 2025 on 12 May and commends ME Research UK on the occasion of 25 years since its foundation; notes that the charity is dedicated to commissioning and funding biomedical research into the causes, consequences and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/ CFS); believes that the disease, which affects at least 20,000 people in Scotland, is often misunderstood, mis-diagnosed and under-diagnosed, and is grievously under-researched; understands that the Perth-based charity has invested over £4.5 million in research with 68 research projects globally, four PhD-level projects and a Fellowship; further understands that, in terms of projects, the Perth-based charity is the largest funder of ME/ CFS outwith North America, that it presently funds projects in Australia, France, Germany, the Netherlands, Sweden, USA and the UK, and is funded entirely by individual donations, and extends its thanks for the work of ME Research UK in informing, influencing and investing in ME research globally.
Liz Smith, Mid Scotland and Fife, Date lodged: Tuesday, 22 April 2025; 
Motion reference: S6M-17226
 
To raise awareness of ME among politicians at Holyrood ahead of International ME Awareness Day, Liz Smith MSP (who represents ME Research UK’s Perth base as regional list MSP for Mid Scotland and Fife), has lodged a Motion at the Scottish Parliament. The Motion also marks ME Research UK’s 25th anniversary by highlighting our work in the past quarter century.
Most Motions submitted by MSPs raise awareness of an issue or recognise a group, business or individual with other non-Cabinet MSPs able to endorse to show their agreement and support and although of no legislative effect the Motion remains on Parliament’s website. Of the 129 MSPs only 104 are able to support such Motions.
 
 
ME Association (MEA) announce -
ME Awareness Week 2025, 12th - 18th May
ME Awareness Week is observed every year in May surrounding International ME/CFS Awareness Day (also known as World ME Day) on 12th May.   This year, we are focusing on information surrounding the symptom management of ME/CFS. Please keep any eye out on social media for our posts!
 
Awareness helps in several ways: it educates the public and healthcare providers, reducing stigma and promoting early diagnosis; it drives funding for research into causes and treatments, as there’s currently no cure; and it fosters empathy and support for those living with ME, who often feel isolated due to the condition’s impact on their daily lives. By shining a light on ME, we can improve quality of life for millions and push for better medical and social resources.
 
 
The 25% ME Group share
M.E awareness 2025
Awareness helps in several ways: it educates the public and healthcare providers, reducing stigma and promoting early diagnosis; it drives funding for research into causes and treatments, as there’s currently no cure; and it fosters empathy and support for those living with ME, who often feel isolated due to the condition’s impact on their daily lives.  By shining a light on ME, we can improve quality of life for millions and push for better medical and social resources.
 
Raising awareness for Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS), is vital because it’s a misunderstood and often invisible illness.  ME is a severe, chronic condition that impacts multiple body systems, leading to extreme fatigue, pain, brain fog, and post-exertional malaise - where even small activities worsen symptoms.
 
 
Action for ME give details of the Joint APPG meeting.
Joint ME and Long Covid APPG meeting agenda - May 2025
24 April 2025
The first joint meeting between the APPG on ME and the APPG on Long Covid is taking place on Wednesday 14 May, from 5pm - 7pm.
 
Ensure you MP is aware of this important joint meeting during ME Awareness Week.
Link for further details at.

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Part 3.  Inaugural Meeting of the All Party Parliamentary Group (APPG) on M.E.
 
 
Action for ME (AfME) report following the recent APPG on ME meeting 
APPG on ME is now formally registered
December 20, 2024
 
On Tuesday evening, the inaugural meeting of the All-Party Parliamentary Group was held and we're pleased to announce that the APPG on ME is now formally registered!.  Jo Platt MP was unanimously confirmed in appointment as Chair, by the Group.
Following this, a discussion was held on the APPG's purpose and to suggest priorities for the upcoming year, which included relaunching the inquiry into severe ME that the previous APPG was unable to complete, due to the General Election.  Members will now need to consider the suggestions and identify next steps.
 
Speaking following the meeting, Action for ME Chief Executive, Sonya Chowdhury, said:
"I want to start with a thank you to all those who took the time and energy to write to their local MP, encouraging to attend the meeting.  Thank you also to all the MPs who have pledged their support to people affected by ME by being a part of this APPG and a special thank you to Jo, for Chairing this group.
I'm really excited by the potential this Group holds to create real change for people with ME and very much look forward to working with them moving forwards."
 
The full minutes can be viewed, alongside a meeting summary, on the APPG's website.
Action for ME provides the Secretariat to the APPG; this is joint funded by the ME Association
 
 
Extract from ME Research UK (MERUK)’s report following the recent APPG on ME meeting.
New All Party Parliamentary Group on ME formed 24 December 2024
 
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament and the House of Lords seeking to improve health, social care, education and employment opportunities for people with ME and accelerate biomedical research into the cause and treatment of ME.
draft Minutes of APPG 17 Dec 2024
 
Forming an All Party Parliamentary Group is not simple but is highly beneficial to a cause to have a forum where legislators and interested parties can meet and act within the seat of government.  On 17th December 2024 a new APPG on ME held its inaugural meeting and was subsequently entered on the Register of APPGs.  MP Jo Platt was proposed and confirmed as Chair - office bearers being Tessa Munt MP, Lord Offord of Gavel, and Debbie Abrahams MP and members being MPs Bradley Thomas, Louise Jones, Luke Charters, Rachel Maskell and Paul Waugh together with a member of the House of Lords - Baroness Scott of Needham Market.
 
The MERUK report also gives “Areas of action as recorded in the draft Minutes encompass”.
 
•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MERUK  •  N.H.S.

Part 2.  House of Commons Health and Social Care Debate, and Parliamentary written response.
 
 
The ME Association (MEA) report from the House of Commons Debate: Health and Social Care
January 10, 2025
Below is a response to a question from MP Jo Platt (Labour/Co-operative, Leigh and Atherton), newly appointed chair of the All Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME).
 
Andrew Gwynne, The Parliamentary Under-Secretary for Health and Social Care
My hon. Friend raises a really important point. NHS England is due to complete a stocktake of long covid services throughout England at the end of this month. That will provide an accurate in-depth overview of not only long covid services but ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome - services.
The stocktake will provide a comprehensive and accurate national picture, identify key challenges and make strategic recommendations for future service improvement, development and assurance.
 
MEA’s Comment
We hope that this ‘stocktake' and strategic review of Long Covid and ME/CFS specialist service provision in England, will complement the Final Delivery Plan on ME/CFS and the work we have been doing with ICBs and local services to try and ensure sufficient funding is available to make the improvements which are necessary to fully comply with the NICE Guideline recommendations.
 
 
Last month Andrew Gwynne, The Parliamentary Under-Secretary for Health and Social Care, mentioned the Final Delivery Plan on ME/CFS when he gave a written response to Tessa Munt MP.
 
Answered on 19 December 2024
We are committed to improving the care and support for people with myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome. We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.
 
We published a summary report of the responses to the 2023 consultation on the interim delivery plan on 19 December 2024. The responses to that consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan, which we aim to publish by the end of March 2025. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
 
The report is available at the following link:
Improving the experiences of people with ME/CFS: consultation outcome

•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MERUK  •  N.H.S.

Consultation Released, Health & Social Care Debate and APPG on M.E.
 
Part 1.  Interim Delivery Plan on ME/CFS Consultation Released.
 
The ME Research UK (MERUK) fully explain Details of Consultation on Interim Delivery Plan released
24 December 2024
October 2023 saw the conclusion of the consultation phase on the UK Department of Health and Social Care (DHSC) ‘My full reality: the interim delivery plan on ME/CFS‘ . ME Research UK commented fully on the provisions as they relate to research and the limitations the charity saw in the plans.
 
3,338 responses were received -

• 47 were from organisations – including the views of ME Research UK
• 3,113 were from individuals sharing their personal views
• 53 were from individuals responding on behalf of someone else
• 125 were from individuals sharing their professional views

 
Such were the number of responses that the DHSC has taken over a year to analyse the results but these were released online on 19 December 2024 as ‘Improving the experiences of people with ME/CFS: consultation outcome’ and covers the areas of the draft Delivery Plan namely

• research
• attitudes and education
• living with ME/CFS
• language used in relation to ME/CFS

 
The MERUK’s detailed article also gave information on -
Responses relevant to Research;  Funding;  Strategy  - including calls for a centralised database of research and a centre for research excellence, as proposed in the 2022 All-Party Parliamentary Group report;  Research capacity;  Research scope;  Patient involvement;  Actions.
 
MERUK Conclusions
 
ME Research UK is pleased to see that so many of the threads of our response have been echoed by other respondees and feature in the list of most commented and supported. The stronger the calls for focused and well-funded biomedical research into the causes, consequences and treatment of ME/CFS the more likely it is that government will need to re-think, re-focus and ACT.
 
That ring-fenced funding, prioritisation of biomedical research, and need to encourage and retain researchers in the field has been taken up chimes with the charity’s step-by-step approach.
Research into ME/CFS cannot be left to patients to fund. Attitudes within central funders must change and only the government can dictate and demand that this happens. If the results of the consultation are translated into a strengthened and improved Delivery Plan then real change may occur but we must all await publication of the final Delivery Plan due in March 2025. As the government web page says “this document summarises the consultation responses only and is not intended to announce new government actions on ME/CFS.’
That being said, although the Key Actions are to be welcomed the Six actions proposed in the IDP appear weak and unlikely to produce the transformational change needed to achieve the research goals. These actions must be strengthened to align with the clear demands of the responses and to give the outcomes outlined in the Key Actions a chance to be realised.
 
 
The ME Association announced -
The Department of Health and Social Care (DHSC) publishes the outcome of the consultation process for the DHSC Delivery Plan on ME/CFS,
December 20, 2024
Dr Charles Shepherd of the The ME Association states:
This document summarises the consultation responses.  Please note that it is not intended to be an announcement of any new government actions on ME/CFS.
The consultation responses, alongside continued stakeholder engagement, will inform the development of the final Delivery Plan on ME/CFS.  The DHSC aims to publish the final version of the Delivery Plan by the end of March 2025.  The final Delivery Plan will be co-produced with stakeholders, through the ME/CFS Task and Finish Group.
According to the DHSC this will involve careful consideration of the consultation responses and the assessment of the feasibility and viability of the proposed actions.  There is a lot to read here and I have only just seen this ministerial announcement - so I will comment further when I have had time to go through it properly.
Dr Charles Shepherd, Hon Medical Adviser MEA

•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MERUK  •  N.H.S.

Take part in this final stage of research to develop an assessment of ME/CFS symptoms.
 
The ME Association (MEA) announce
Research: The Index of ME Symptoms (TIMES) for ME/CFS
September 13, 2024
The ME Association is funding a study led by Prof Sarah Tyson (who also has ME) from the University of Manchester (as pictured), to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services. 
“Many thanks to the thousands of you who have supported the clinical assessment toolkit project. We are now entering the final stages of the data collection, which is a busy time!
Professor Sarah Tyson” 
 
The final stage of the research is to develop an assessment of ME/CFS symptoms, called The Index of ME Symptoms (TIMES) by working with people with ME/CFS and clinicians in specialist services.   We have completed the initial analysis for the TIMES, which assesses symptomology and we have made quite extensive revision in the light of that analysis and your feedback.  It is now much shorter and simpler with just one question per symptom, although there are still quite a lot of symptoms, as we need to be comprehensive. Therefore, we would now like to double-check that the revised version provides the robust data that we expect it to. 
N.B. We only need a smaller number of participants (250) for this analysis, so we will close the survey once we have reached this number, which will probably be in a couple of weeks. Please be aware that there will be a couple more surveys coming in the next few weeks.  If you have any questions or comments, please contact Prof Sarah Tyson, the Chief Investigator at [email protected]
 
Please could you help by completing the following survey.
Developing a clinical assessment toolkit for people with ME/CFS and clinical services.  We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) to complete this online questionnaire.  People whose ME/CFS was triggered by a covid infection (i.e. long covid) are also invited to take part.  N.B. We only need a smaller number of participants (250) for this analysis, so we will close the survey once we have reached this number, which will probably be in a couple of weeks. Please be aware that there will be a couple more surveys coming in the next few weeks.
If you have any questions or comments, please contact Prof Sarah Tyson, the Chief Investigator at [email protected]
 
 
Our blog’s previous request from Prof Sarah Tyson, earlier this year
ME/CFS Research:  request from organisers for participants
11/4/2024.  Below is an Invitation to participate in the development of a Clinical Assessment Toolkit for people with ME/CFS, and the Clinical Services.
 
 
The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS” Information Sheet" was updated in May 2024.  It is available on our website in the About M.E. section.  The recent group announcement includes Symptoms and Awareness news from Action for ME (AfME),, BACME (British Association of Clinicians in ME/CFS),  ME Research UK (MERUK); and the ME Association.(MEA).

•  Action for ME  •  M.E. Association  •  MERUK  •  Research  •  Worcestershire M.E. Social Group

Recent News from ME Research UK, Action for ME and the ME Association.
Former Worcestershire MP’s involvement
 
ME Research UK (MERUK) give ME/CFS Delivery Plan detailed announcement.

Winter 2024/2025 Publication announced for ME/CFS Delivery Plan
13 August 2024
Baroness Scott of Needham Market tabled 3 linked questions on 29 July 2024 asking the Dept of Health and Social Care to provide - an update on publication of the cross-Government ME/CFS Delivery Plan (UIN HL452), whether the Delivery Plan will include provision for hospital treatment and full consideration of how to safely prevent malnutrition in very severe ME (UIN HL453), and querying what assessment the government has made of the percentage of the research budget allocated for ME/CFS and Long Covid, and whether they plan to increase this amount (UIN HL454).
 
Answering on behalf of the government in a combined response, Baroness Merton (Parliamentary Under-Secretary at the Department of Health and Social Care) revealed that -
 
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.
 
What does this tell us?

• publication of the Delivery Plan - a process announced in May 2022 - is a ‘priority’.
• the government’s response to the consultation phase of the draft Delivery Plan will be forthcoming ‘in the coming months’.
• the full Delivery Plan will be published in the Winter but no firm date given despite the fact that publication has slid back and was initially due by the end of 2022, …. then as soon as possible in 2023 ….. and now slated for end of 2024 …. or beginning of 2025.
• NIHR continues with its sleight of hand by referencing only past 5 years of funding with its support of deCodeME whilst ignoring decades of underinvestment in biomedical research into ME/CFS and MRC’s funding of biopsychosocial research.
• Egregious underfunding of ME/CFS research when compared to long COVID.
• No comment on whether ME/CFS research funding will be increased.
• Despite decade’s long call for ring-fenced ME/CFS research funding, (cf. CMO Working Group and Gibson Report) it is confirmed that “not usual practice for the NIHR to ring-fence funds” for particular illnesses.  It appears the government is oblivious to fact that both Germany and The Netherlands (28.5 million euros 10-year programme) have strategic ME/CFS research collaboratives precisely because of ring-fenced funding.
• UIN HL453 went unanswered.

 
Plus ça change
This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research.  It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems with only an intense research programme can help resolve.  It is an illness whose time has certainly come.
 
Group on Scientific Research into ME Report (Gibson Report) Nov 2006
 
 
Worcestershire ME Social Group’s blog, and 'About ME' information.
The late Dr Richard Taylor, MP for Wyre Forest, (from 2001 to 2010), was Vice chairman of this all-party Group for Scientific Research into ME (GRSME).
 
 
Worcestershire ME Social Group’s blog,
World ME Day Sunday 12 May and ME/CFS Awareness Week 6 - 12 May
7/5/2024
World ME Day Debate lead by Sir Sajid Javid, MP for Bromsgrove (2010 - 2024), was held on the first day of ME/CFS Awareness Month in Westminster Hall, Houses of Parliament.  “Introducing the topic, the former Secretary of State for Health and Social Care and impetus behind the Delivery Plan process,”
 
 
News from Action for ME (AfME).
Labour commits to publish full Delivery Plan on ME/CFS
August 08, 2024
Statement by Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public Health and Prevention.
 
In response to concerns from the ME community relating to the publication of the full Delivery Plan on ME/CFS, following the Government's response to a question by Baroness Scott of Needham Market on 29 July, Andrew Gwynne MP has confirmed Labour's commitment to publishing the full Delivery Plan on ME/CFS:
 
"It isn’t being delayed again… I’ve asked my officials to publish the plan, which they will now do. The last government sadly stalled the process. Officials are now putting everything together and I should have something to see very soon pending publication."
 
In response to Andrew Gwynne MP's statement, Action for M.E. CEO, Sonya Chowdhury, said:
"We are delighted to hear the Labour Government's commitment to publishing the full Delivery Plan on ME/CFS and know this announcement will be met with a level of relief from the ME community. It is now essential that, once published, the commitments made to people affected by ME within the Plan are implemented as a priority, including urgent action to address the lack of research funding into the condition, and we look forward to working with the Labour Government to ensure this happens."
 
Parliamentary Question: Baroness Scott of Needham Market, 29 July 2024
“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.”
Answer: Baroness Merron, 06 August 2024
“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.”
 
 
Plus. Information from the ME Association(MEA)
Labour government commits to publishing the final delivery plan on ME/CFS
August 7, 2024
Parliamentary Question: Baroness Scott of Needham Market, Liberal Democrat, 29 July 2024
“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.”
 
Answer: Baroness Merron, Labour, 06 August 2024:
“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.”
 
 
Previously, last month, the ME Association (MEA) stated a Parliamentary Question
July 26, 2024:
What steps does the Government plan to take to improve support for people with ME 
 
QUESTION: Dr Rupa Huq, Labour, Eailing 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.
ANSWER: Andrew Gwynne, Labour, Gorton and Denton –  Parliamentary Under-Secretary of State at the Department of 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.”
 
MEA Comment
We have a new Labour Government and this is a recurring parliamentary question on ME/CFS with the same ministerial answer.
As per the APPG on ME announcement, we understand the need to ensure that ME is kept firmly on the agenda of the new Government and that the All-Party Parliamentary Group (APPG) on ME will play an important part in this.
The ME Association will continue to campaign for people with ME/CFS and we would urge the new Labour Government to do its very best to ensure there are no further delays in publishing the Delivery Plan on ME/CFS.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
 
A reminder -
The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS” Information Sheet" was updated in May 2024.  It is available on our website in the About M.E. section.  The recent group announcement includes Symptoms and Awareness news from Action for ME (AfME),, BACME (British Association of Clinicians in ME/CFS),  ME Research UK (MERUK); and the ME Association.(MEA).
 
Contact your local MP.  Ensure your local MP is aware of the situation.
 
•  Action for ME  •  Government U.K.  •  M.E. Association  •  MERUK 
•  MP  •  N.H.S.  

Kidderminster Shuttle: Dr Richard Taylor: Former Wyre Forest MP dies aged 89.
 
The Gibson Inquiry (2006)
The Gibson Inquiry - Dr Richard Taylor, MP for Wyre Forest, (from 2001 to 2010), was Vice chairman of this all-party Group for Scientific Research into ME (GRSME). 
Our group were invited to the Oral Hearing on 18 April, 2006. Our presentation document is on the GSRME website.  The Report was published in November 2006.

Dr Taylor is on page 11 of the Spring 2007 ME Research UK magazine - 'Breakthrough'. 
“In September 2006, Simon Winnall and Ian Winstanley embarked on a great expedition to North-East Tanzania to climb Mount Kilimanjaro, the highest peak in Africa at 5,895 m.  Simon and Ian funded the trip themselves, so all the money raised went towards our ME research programme..
Simon and Ian presented the cheque to Dr Richard Taylor, MP for Wyre Forest and Vice Chair of the Parliamentary Inquiry on Scientific Research into ME, who accepted it on our behalf at the Worcestershire ME Support Group.” 

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