ME Association (MEA) and BBC articles (full articles available from the links.)
The ME Association opposes the Closure of ME/CFS and Long Covid Services in Coventry and Warwickshire
July 7, 2026
 
Coventry and Warwickshire has lost its dedicated services for Myalgic encephalomyelitis / chronic fatigue syndrome and Long COVID. Both the Rugby-based community service and the George Eliot Hospital (GEH) service are now closed.
Since December 2025, the Healthcare team has been engaging with local NHS bodies in an effort to understand and challenge these decisions – initially to prevent closure and subsequently to secure clear answers about how and why they were made.
 
Changes to ME/CFS services in Coventry & Warwickshire
By Karren Winters-Cavalot / July 2, 2026

The specialist ME/CFS service at George Eliot Hospital has closed, and changes have also been made to the Long Covid/ME service in Rugby, with GPs now referring patients directly to secondary care based on their presenting symptoms.
 
The ME Association is concerned that these service changes appear to have taken place without a formal public consultation, despite the impact they may have on people with ME/CFS and those awaiting diagnosis and support.  We have not yet heard back from the MPs, but have been advised that responses can take up to 28 days.
 
If you have been affected by these service changes or have information that may help us better understand the current situation, we’d be pleased to hear from you at [email protected]. Full MEA article.
 
 
The BBC’s long article includes a quote from Dr Charles Shepherd the MEA’s medical advisor, on “What is M.E.”
Charity concerns over changes to ME services
The ME Association said up to 6,000 people in Coventry and Warwickshire could be affected by the changes to ME services
By Alec Blackman, Reporting from West Midlands, Published 13 July 2026

Changes to the services offered to people with myalgic encephalomyelitis (ME) - also known as chronic fatigue syndrome (CFS) - or Long Covid, are worrying, according to a leading charity.
The ME Association said George Eliot Hospital in Nuneaton had closed its service, while those with Long Covid served by University Hospitals Coventry and Warwickshire NHS Trust (UHCW), were being referred to other care schemes by their local GPs.

Herefordshire and Worcestershire Post Viral Fatigue service

Marina Townend, Service Lead/Specialist Occupational Therapist, of the Herefordshire and Worcestershire Post Viral Fatigue service,, has shared her thoughts, about the local situation, and included an update on our local service.
 
Many thanks for contacting me. I haven't got any comments to add at the moment but I am saddened to hear of the closure of the Coventry and Warwick service, and hope this inequality across the ICB will be reconsidered and redressed.  To my surprise, we haven't had a lot of extra out-of-area referrals (yet?) but I am aware that this may be one of the outcomes of the closure. 
 
I've been meaning to contact you to let you know that Tabitha's secondment has ended and we now have a new team lead - Sara Young. Sara was clinical lead therapist in the Post Covid service and also worked in the ME/CFS service for many years before the integration. Tabitha is remaining with the team as an enhanced clinical practitioner (ECP). She will work closely with Dr Lowe, which we hope will help to reduce waiting times for patients, particularly those who don't yet have a diagnosis. 
 
I'm planning to pop into the social group next week  so hope to see you then. 
kind regards, Marina
Marina Townend., Service Lead/ pecialist Occupational Therapist. Post Viral Fatigue service
Malvern Community Hospital | 185 Worcester Road | Malvern | WR14 1EX,, Tel. 01684 612671

For the latest news on the local Post Viral Fatigue Service, see -
 
Herefordshire & Worcestershire Post Viral Fatigue Service - Update (May 2026)
11/5/2026
Herefordshire & Worcestershire Post Viral Fatigue Service for adults with ME/CFS & L/C.
(Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long Covid).
 
Pdf copy of this at end of May 2026 blog.

The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME).  (APPG on M.E.) 
Contact your local MP, and explain your situation.  When the date of the next APPG on M.E. meeting is announced, you will be pleased to know that you have already spoken to your local MP.    The Worcestershire ME Social group website contains a list of Local MPs: List of MPs in the West Midlands (Herefordshire and Worcestershire)
 
The secretariat for the APPG on ME is jointly undertaken by Action for ME and The ME Association.

The ME Association (MEA) recently announced
MP Tessa Munt elected as the new Chair of the APPG on M.E.
January 30, 2026
 
As you may already be aware, Tessa Munt MP has officially been appointed Chair of the APPG on ME, following the group's Annual General Meeting last week.
We are delighted to be working more closely with Tessa and are so thankful for her ongoing commitment to the ME community.
We would also like to sincerely thank Jo Platt MP, and her office, for serving as the APPGs most recent Chair and leading the group since it was reconstituted at the end of 2024. We are very pleased that Jo will be continuing to support the APPG as an Officer and look forward to continuing to work closely with her.
 
The APPG's website has since been updated to reflect these changes.
The Secretariat will be meeting with Tessa’s team next week to agree on upcoming meeting dates and as soon as these are scheduled, they will be shared on the APPG's website so that you can invite your MP with advanced notice.
Additionally, we will be uploading all AGM-related documents, alongside the minutes from the December 2025 meeting, to the APPG's website, once they have been approved.

The APPG on ME website states:
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament and the House of Lords.
All-Party Parliamentary Groups (APPGs) are informal groups of MPs and Members of the House of Lords who share an interest in a particular topic. APPGs can’t make laws and are not official parliamentary committees, but can be influential in Parliament and beyond. The UK Parliament website maintains a register of all APPGs.
The APPG on ME seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME.
 
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament (MPs) and members of the House of Lords (Peers).
The Group meets several times a year and uses each meeting to focus on a specific issue affecting people with ME.  Sometimes experts are invited to give presentations on a specific topic, to improve the understanding and knowledge of the APPGs members.  This helps members both to support individual constituents and to advocate for policy change in Parliament.
The APPG creates an important setting to show politicians the scale of challenges facing people with ME, and give space for discussions on how best this can be changed.
 
Get to know the APPG on M.E Chair, Officers, and Members, alongside more about the organisations who support our work.  Encourage your MP to attend meetings, and join the APPG on M.E. membership.  Current Membership:
Bradley Thomas MP,for Bromsgrove and the Villages  (APPG for M.E. Officer)
Dame Harriett Baldwin MP for West Worcestershire, (APPG for M.E. Member)
 
 
Action for ME (AfME)
Parliamentary Champions
About the AfME:s Network
Our network of Parliamentary Champions are our 'go-to' individuals when engaging with Government and building support for our campaigns more broadly in Parliament and beyond.
Our champions are supportive of our work to create a world without ME and give a voice to the estimated 1.35m people in the UK who live with ME or ME-like symptoms, including post-exertional malaise.
 
What does a Parliamentary Champion do?
Parliamentary Champions support us in raising awareness of ME by helping to include ME and related issues in parliamentary business and working with media to highlight key campaigns.
MPs and Peers have a wealth of knowledge so our Champions may also suggest other ways to raise the profile of ME according to their skillset
 
Dame Harriett Baldwin, MP for West Worcestershire, (a AfME, Champion) stated -
“I am proud to become the latest Parliamentary Champion for Action for ME, supporting their vital work to raise awareness of this often misunderstood illness.
My commitment is to ensure that the voices of those living with ME are heard in Parliament, and I will work with colleagues to push for meaningful change to improve the support and services available to people with ME.”

List of Herefordshire and Worcestershire MPs with email/websites is
also available for you on the Social Group:s website https://worcsmegroup.weebly.com/links.html#4WorcsMPs
for your convenience.

Please encourage your MP to attend  -
ME/CFS Westminster Hall debate on Wednesday19 November,
Overlapping Illnesses Alliance (OIA) Parliamentary Drop-in Event, Tue, 25 November.
And sign the ME/CFS Final delivery plan EDM (Early Day Motion), & join the APPG (All Party Parliamentary Group) on ME.
 
A full list of Herefordshire and Worcestershire MPs with email/websites is available for you.
 
 
Karen Hargrave from #ThereForME circulated -
Westminster Hall Debate - Wednesday 19 November
In a break from our usual schedule, we wanted to let you know about a Westminster Hall Debate, focused on government support for ME, which will be taking place next Wednesday 19 November from 16:30-17:30.  And we need your help.
 
The debate has been tabled by Lib Dem #ThereForMP extraordinaire Tessa Munt.  Westminster Hall debates are a key way for backbench MPs to raise an issue and receive a government response.  They take place away from the House of Commons main chamber and provide a way for MPs to engage on issues they care about.  A packed Westminster Hall debate can be a strong sign to the government about levels of parliamentary support on an issue.  And with the recent Final Delivery Plan publication, there’s no time like the present to talk about what comes next.
 
You can help by writing to your MP to let them know about the debate and ask them to speak on your behalf. We’ve got a template here that you can use to write to your MP - although the more you can personalise it, the more likely it is that your MP will take notice.
Let’s pack Westminster Hall.

The ME Association highlight the Overlapping Illnesses Alliance: Parliamentary Drop in Event (Time: 3pm - 5pm; Venue: Room U, Portcullis House,). Ask your MP to attend’
UK charities have joined together to create an Overlapping Illness Alliance (OIA), which includes the following organisations EDS/HSD UK, Long Covid Support, Long Covid Kids, PoTS UK, Mast Cell Action, Action for ME and Forward ME (of which the ME Association is a member).
The OIA is a coalition of charities working to improve recognition, care and support for people of all ages living with overlapping conditions such as Myalgic Encephalomyelitis (ME), Long Covid, Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder, Postural Orthostatic Tachycardia Syndrome (PoTS), and Mast Cell Activation Syndrome (MCAS).
This alliance should hopefully give more weight to gaining support for people with these conditions and highlight the need for research.
 
This is a vital opportunity for MPs to hear directly from charities working to improve recognition, care and support for people living with complex, overlapping conditions. MPs are far more likely to engage when they know how this affects their constituents, so your voice essential to ask them to attend this event.
Please use the template letter available from the MEA
 
Info for Herefordshire and Worcestershire MPs with email/websites is available for you.

The ME Association announce 
September 23, 2025
APPG (All Party Parliamentary Group) on ME - 10th September meeting minutes now available
The minutes from the 10 September APPG meeting are now available on the  APPG's website. (APPG’s website).
 
The Group first discussed the Delivery Plan, welcoming its release, but highlighting its failure to address many concerns previously raised by charities and people affected by ME experience throughout the consultation process.
The recent EDM, tabled by Tom Morrison MP was also noted before Sonya Chowdhury, Action for ME Chief Executive, provided an update regarding ongoing engagement as part of the Delivery Plan’s implementation.
 
They then heard directly from three people with lived experience as part of the Severe ME Inquiry. Whilst attendance at the meeting was heavily impacted by TFL strikes and other parliamentary activity, all members of the APPG have received an evidence pack containing a variety of recorded and written contributions from people with severe ME and/or their carers.
Members are now reviewing the evidence pack and the APPG will look to pull together all of the evidence shared as part of the inquiry at its October meeting, before developing a report and subsequent recommendations.
 
It was also noted that the APPG was yet to receive a response from the letters shared by Jo Platt MP, on behalf of the group, to Patrick Vallance and Minister Dalton.
The APPG would like to once again thank the people with lived experience who provided evidence as part of the Severe ME Inquiry, recognising the importance of their voices being heard, but also the post-exertional impact that likely followed.
 
 
Action for ME report on the planned October meeting  -
APPG on ME - October meeting update
29 October 2025
Unfortunately, the APPG's severe ME inquiry evidence session, scheduled for last Thursday, did not go ahead due to a limited number of MPs being in Parliament that day.
We are currently working to rearrange the session to ensure that the evidence session still goes ahead and will share further news on this once a new date has been secured.
Chair of the APPG, Jo Platt MP, shared the following update:
“Thank you to everyone who has shown such strong interest in the APPG inquiry into Myalgic Encephalomyelitis (ME). We deeply value your engagement and support."
 
The evidence session scheduled for last week unfortunately did not go ahead, as many MPs had returned to their constituencies on that day. While invitations were sent to all members, the session fell on a day without a three-line whip in Parliament. This meant MPs were not formally required to be in Westminster and typically use that time to meet with constituents. This was especially the case following a three-line whip the previous Thursday, which had already extended their time in Parliament.
It’s important to emphasise that this does not reflect a lack of commitment from MPs. I’ve had meaningful conversations with colleagues across the House about ME and the work of the APPG, and there is genuine interest and concern. The timing simply didn’t align.
We are working to reschedule the session as soon as possible and will keep you updated. Thank you again for your patience and continued advocacy.”
Jo Platt MP, Chair, APPG o ME,


Is my local MP part of the APPG on ME?
You can find a full list of APPG members and officers on the APPG's website, here.
If your local MP is not currently a member or an officer, then we would encourage you to write to them using this template letter, asking that they join the APPG and show their support for people affected by ME.
 
 
About the APPG on ME.
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament and the House of Lords. It seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME. Secretariat for the APPG is provided by Action for ME which is jointly funded with the ME Association.

Has your MP signed this EDM?  You can see all signatures here.  
The following explanation is from ME Research UK
 
Parliamentary Motion on ME/CFS Delivery Plan limitations
28 October 2025
Now open for Honourable Members to sign, and initiated by Tom Morrison MP, is an Early Day Motion (EDM 1852) which brings to Westminster the limitations of the ME/CFS Delivery Plan and, in particular its research points. These points largely mirrow the weaknesses ME Research UK voiced upon publication of the Plan in July 2025.
 
The Early Day Motion (EDM) is now open to MPs to sign. Officially these motions are submitted for debate in the House of Commons but for which no date has been fixed. As no specific parliamentary time is allocated to EDMs very few are debated but place on record the views of individual MPs and they can demonstrate the level of parliamentary support for a particular cause or point of view.

"That this House welcomes the publication by the Department of Health and Social Care of the Final Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and recognises the work of officials and the ME community in shaping the plan; notes with concern, that the plan falls short of delivering the meaningful change urgently needed by people with ME/CFS; further notes the absence of a strategic approach to ME research, including the omission of proposals for a dedicated ME research hub; expresses concern that much of the new funding cited, such as for the PRIME (Patients, Researchers and Industry for Myalgic Encephalomyelitis) project, was already secured through existing competitive processes; highlights the lack of sufficient accountability for implementing services and updating medical education in line with the NICE Guidelines on ME; regrets the limited attention given to severe ME and the absence of guarantees on specialist care provision; and calls on the Government to ensure robust accountability for its implementation, and provide the resources necessary to improve care, support and outcomes for people living with ME/CFS."
 
 
List of Herefordshire and Worcestershire MPs with email/websites is
also available for you on the Social Group's website for your convenience.

•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association  •  MP  •  Parliament U.K. 

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. 

Welfare Reform: One Major Win, More Work Ahead
July 2, 2025
Last night, MPs voted to approve the Welfare Reform Bill at its second reading - but not before campaigners secured a major victory.  After weeks of pressure from disability rights organisations, charities, and supportive MPs, the government has made a dramatic U-turn: Clause 5, the proposal to tighten PIP eligibility rules, has been withdrawn.
 
This is no small change. Clause 5 was the most punitive part of the bill, and its removal represents a huge concession by the government - both politically and fiscally. It was this clause that would have introduced a new rule requiring claimants to score 4 points in a single activity to qualify for PIP. Experts warned this could have stripped support from hundreds of thousands of people with complex or fluctuating conditions, including ME/CFS and Long Covid.
 
The ME Association Welfare Reform Project has worked closely with partners across the disability sector to expose the risks of this approach - and to amplify the voices of people with lived experience. Through public briefings, detailed policy submissions, and our national campaign survey, we made clear that these changes were unjustified, unsafe, and would deepen health inequality.
 
As part of this wider project, we have also been meeting with MPs and their representatives, disability organisations, and key stakeholders to engage, educate, and campaign against the proposals. These conversations have been central to building momentum and challenging the flawed assumptions underpinning the reforms.
 
Notably, Ella Smith, MEA Welfare Rights Consultant, was invited to meet directly with Stephen Timms, the Minister for Social Security and Disability, to challenge multiple aspects of the proposed reforms. She raised fundamental concerns about the treatment of fluctuating conditions, the logic behind the 4-point rule, and the wider risks to people with ME/CFS. These issues were heard - and have contributed to a major rethink.
You can read how this meeting went.
 
Now, Clause 5 is gone.
This wasn’t quietly shelved - it was dropped because the government was forced to listen. Ministers have now committed that no changes will be made to PIP eligibility, activities or descriptors until a full review has taken place. This review - the Timms Review - is expected to report by autumn 2026, and will be co-produced with disabled people and their organisations.
 
This is a landmark moment. Not only has the government backed away from the most harmful part of the bill, but it has conceded that major reform must start with the people it affects most. It is a direct result of coordinated pressure, evidence-led advocacy, and the power of collective voice.
 
What’s still in the bill?
Although Clause 5 has been removed, the bill still includes wide-reaching changes to Universal Credit. These include:

• Halving the UC health element for new claimants from April 2026
• Freezing the health element for current claimants in real terms
• A new “Right to Try” Guarantee (still being developed), which aims to let disabled people trial work without risking their benefits
• Over £1 billion in new employment support, including £300 million ringfenced for disabled people

These changes remain a serious concern. They risk entrenching a two-tier system, where the level of support someone receives depends on when they claimed - not how unwell they are. This will disproportionately impact people with fluctuating and poorly understood conditions like ME/CFS, many of whom already struggle to access consistent support.
 
What’s not in the bill: Unemployment insurance and the Work Capability Assessment
While the Welfare Reform Bill introduces major changes to PIP and Universal Credit, it’s important to clarify what the bill doesn’t cover.
 
There are currently no confirmed changes to contributory ESA or unemployment insurance in this legislation. The government has previously proposed replacing contributory ESA and new-style Jobseeker’s Allowance with a time-limited unemployment insurance model, but this remains at the consultation stage, with implementation unlikely before 2028/29. These proposals would require new primary legislation and are not part of the current bill.
 
Similarly, although the government has announced its intention to abolish the Work Capability Assessment (WCA), this change is also not included in the bill. Instead, the WCA is being phased out through administrative changes, with health-related support under Universal Credit expected to rely more heavily on PIP entitlement or a severe conditions exemption.
 
This presents a serious concern for people with ME/CFS and other fluctuating conditions. The WCA, while flawed, currently provides important protective mechanisms - particularly through Regulations 29 and 35 - for people who may not meet standard criteria but are nonetheless unfit for work. There is no clear legislative replacement for these safeguards, raising fears that many could fall through the cracks if PIP becomes the sole route to support.
 
The ME Association will continue to monitor and respond to any future developments around these proposals. We are particularly concerned about the lack of legislative detail on how people with fluctuating or invisible conditions will be assessed and protected once the WCA is removed.
 
These issues are not resolved - only postponed. We will remain vigilant.
 
Why the fight isn’t over: the risk of secondary legislation
While Clause 5 has been removed from the bill - which is primary legislation, requiring full debate and approval by Parliament - there is a real risk that similar proposals could be reintroduced in future through secondary legislation.
Secondary legislation (also known as delegated legislation or statutory instruments) allows ministers to make significant changes under the authority of an existing Act, without the same level of scrutiny or debate. It cannot be amended and is rarely blocked. This means that major changes to PIP — including those recommended by the Timms Review - could be implemented quickly and with minimal public or parliamentary oversight.
 
If the government decides to revive proposals like the 4-point rule after the Timms Review concludes in 2026, they could do so via secondary legislation - without a new bill, and without any guarantee of a meaningful vote. That makes the shape and governance of the review itself all the more important.
 
What happens next: the road ahead for the bill
Now that the Welfare Reform Bill has passed its second reading, it moves into the committee stage, where MPs will scrutinise each clause in detail and consider possible amendments. This stage is critical for shaping the final content of the bill, but it’s not the end of the process.
After committee stage, the bill will return to the full House of Commons for the report stage and third reading. At that point, further amendments can be made before MPs take a final vote.
If it passes, the bill then moves to the House of Lords, where it goes through the same sequence of readings, debate, and scrutiny. If the Lords make changes, the bill will ‘ping-pong’ back and forth between the two Houses until they agree on the final wording.
 
Once agreement is reached, the bill receives Royal Assent and becomes law. However, different parts of the bill may come into force at different times, depending on government decisions about implementation.
This means there are still several stages ahead - and multiple opportunities to push for improvements, raise concerns, and influence the detail. The ME Association will continue to engage throughout, making sure the voices of people with ME/CFS are heard at every stage.
We are calling for full transparency, meaningful co-production, and a review process that recognises the realities of living with ME/CFS, Long Covid, and similar complex conditions. We will also continue to highlight the democratic importance of how future changes are made - and to campaign against any attempt to push through reforms that harm disabled people via the back door.
 
This campaign victory builds on the ME Association’s wider policy work. As part of the Welfare Reform Project, we submitted detailed evidence to the Work and Pensions Select Committee and a formal response to the government’s Green Paper. Both documents highlighted the serious risks posed by the proposed reforms for people with ME/CFS and Long Covid and helped to shape public and parliamentary debate around Clause 5 and beyond.
 
This is not the end of the story - but it is a clear demonstration that campaigning works. The MEA Welfare Reform Project was created to ensure the voices of people with ME are heard at the highest levels. This week, they were.
 
Thank you to everyone who has written to their MP, shared their story, completed our survey, or supported this campaign. We will continue to speak out, stand firm, and fight for a fairer system - one that protects, not punishes.
 
Clause 5 is gone. Let’s keep going. We are proud to have campaigned so hard on this issue, and we will continue to ensure our community’s voices are heard every step of the way. #ListenToME #WelfareReform #DisabilityRights
 
You can check how your MP voted on the Bill below:
Vote Breakdown
 
Ella Smith
Welfare Rights Consultant,
The ME Association
Further Information

• The Guardian: How did your MP vote on the welfare reforms? | July 1st, 2025

•  Benefits  •  Government U.K. 
•  M.E. Association  •  MP 
•  National Newspapers  •  Parliament U.K. 

Proposed Welfare Reforms - ME Association’s Position Statement, 
Action for ME’s response to Government’s Spending Review. 
 
 
The ME Association (MEA) launch an urgent survey.
Fighting for Fairness: We Need Your Voice to Challenge Benefit Reforms
June 19, 2025
The ME Association has launched a major project to respond to the government’s proposed welfare reforms - and we urgently need your help.
By Ella Smith, Welfare Rights Consultant & Paul Jones, Policy and Public Affairs Consultant
 
The ME Association has launched a major campaign to respond to the government’s proposed welfare reforms - and we urgently need your help.
The government is planning significant changes to Personal Independence Payment (PIP) and the wider disability benefits system. These changes are likely to hit people with ME/CFS and Long Covid especially hard. Many risk losing their benefits due to new rules that do not reflect the reality of living what can be a fluctuating* (whereby symptoms are always present ranging in severity), and misunderstood disability.
We believe these reforms are unfair, unworkable, and deeply damaging to our community. That’s why we’re taking action.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
 
What the MEA is doing
We are working on several fronts to make sure the voices of people with ME/CFS and Long Covid are heard. We are:

• Submitting evidence to the Work and Pensions Select Committee
• Responding in full to the Pathways to Work Green Paper consultation
• Meeting with MPs, policymakers, and key influencers
• Building a coalition with other charities, academics, and campaigners
• Engaging the media to raise public awareness
• To strengthen our voice, we need concrete, real-world data - and that’s where you come in.

 
Why your story matters
We’ve created a comprehensive survey to gather both personal experiences and detailed data about the benefits system with a particular focus on Personal Independence Payment (PIP) – the benefit that will be hit the hardest. We want to know:

• What benefits you receive - or have been denied
• How many PIP points you were awarded for each activity
• Whether you had to appeal, and if so, what happened
• How PIP affects your ability to work
• Whether you’ve been put off applying for PIP and your reasons
• If you had access to help with the process, and how easy or difficult that was

This information is vital. It will directly inform our submissions to government and help us challenge flawed policies that fail to recognise the lived experience of people with ME/CFS and Long Covid.

Take survey
 
Why the focus on PIP?
We know that many people with ME/CFS and Long Covid also rely on other benefits like Employment and Support Allowance (ESA) or Universal Credit.  However, our immediate focus is on Personal Independence Payment (PIP) because the government’s proposed reforms are centred on tightening PIP eligibility and using it as the new gateway to other support - particularly after the Work Capability Assessment is scrapped.
These changes could cause thousands to lose both PIP and the health element of Universal Credit. That’s why we’re gathering detailed evidence now - to defend access to PIP and stop a domino effect that would put lives, health and livelihoods at even greater risk.
 
Why we’re running a separate survey
You may have seen the Long Covid Support et al (2025) campaign and its excellent survey gathering personal stories about life with ME/CFS. We fully support their campaign and its aims. Our survey complements this work by focusing on a specific need: collecting detailed, technical data about benefits - especially Personal Independence Payment (PIP).
This includes information such as how many points people were awarded in each activity, whether they had to appeal, and how receiving (or losing) PIP affects their ability to work. These insights are essential for our submissions to government and parliamentary committees and will allow us to argue more forcefully and credibly on your behalf.
 
Take the survey - make your voice count
We need your help to amplify and build on this campaign. If you're sharing your experience or encouraging others to complete the survey, please use the hashtag #ListenToME on social media. It helps raise awareness, build momentum, and show the government just how many of us are affected. And don’t forget to include the survey link:

Link to Survey

Survey PDF Copy
 
Please don’t wait - the deadline for submitting evidence is fast approaching, and we need your input as soon as possible.
Together, we can push back. This is one of the most important policy moments in recent years to affect our community. With your support, we can push back against harmful changes, demand a fairer system, and work to ensure that no one is left behind.
 
Survey Information & Accessibility

• The survey has 47 questions with a range of multi-choice (required), free text spaces (which can be skipped) and form questions to submit information on Mobility and Daily Living Components
• The survey is in dark mode (where this is possible) to account for people who may have light sensitivity or have problems with the light from screens
• Survey Planet allows the survey to be paused after most questions, if using the same device. Please note: Questions asking for text need to be fully completed and submitted before pausing the survey.
• We have provided a PDF that allows you to preview the questions in advance. This can help you prepare for text options, should you wish to complete any free text questions.

 
 
The MEA explain their position
The ME Association’s Position Statement on the Proposed Welfare Reforms
June 18, 2025
By Ella Smith, Welfare Rights Consultant & Paul Jones, Policy and Public Affairs Consultant
 
The ME Association strongly opposes the series of reforms set out in the government’s Pathways to Work Green Paper.  We believe that the government will not achieve its objective to increase the number of disabled people returning to the labour market by implementing these harmful reforms.
We call on the government to extend and expand the Pathways to Work consultation process, to co-produce all reforms with stakeholders, and provide a full impact assessment immediately - before these proposals are put to a vote in the House of Commons.
The government's proposals, including increasing the conditionality threshold for PIP, threaten to erode vital support for people living with ME/CFS and Long Covid by failing to consider the impact of fluctuating* - where symptoms are always present but range in severity and impact on functional capabilities - and varying conditions.
 
If implemented, as currently outlined, these reforms would exclude many people with ME/CFS and Long Covid from the social security system: plunging more disabled people into poverty or further into poverty, worsen health outcomes, and drive more disabled people away from the labour market.
The ME Association will continue to engage with the government’s consultation process through to July 2025: maintaining a strong presence at Westminster; attending meetings with the Minister of State for Social Security and Disability; and continuing to brief parliamentarians who are concerned about the impact of these reforms on people living with ME/CFS and Long Covid.
We are currently drafting a response to the Green Paper consultation. In addition, we are one of a handful of organisations chosen by the Work and Pensions Select Committee to produce a written submission which will be delivered later today. We are committed to working with government and other key stakeholders throughout the consultation process.
We will publish online the Work and Pensions Committee submission next week, and the full response to the Green Paper consultation after 1 July 2025.
 
Please be assured - we will continue to stand against any reforms or measures that threaten the safety, dignity and wellbeing of people living with ME/CFS and Long Covid.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
 
 
 
MEA give Government’s Announcement
GOV UK Announcement: Welfare bill will protect the most vulnerable and help households with income boost
June 19, 2025
 
Additional protections for millions of vulnerable people on benefits are set to be written into law, under new measures being introduced to Parliament yesterday (18 June 2025).
GOV UK
GOV UK Summary

• New welfare legislation to ensure there are robust protections in place to support the most vulnerable and severely disabled.
• Nearly 4 million households to benefit from uprating of Universal Credit standard rate, the largest, permanent real-terms increase to basic out of work support since 1980, according to the Institute for Fiscal Studies (IFS).
• More than 200,000 people with most severe, lifelong conditions to be protected from future reassessment for Universal Credit entitlement.
• 13-week period of financial support for those affected by PIP changes as part of upcoming welfare reforms.
• Comes alongside £1 billion employment support package that will unlock opportunity and grow the economy as part of the Plan for Change.

 
Extracts
The Universal Credit and Personal Independence Payment Bill will provide 13-weeks of additional financial security to existing claimants affected by changes to the PIP daily living component,
The Universal Credit and Personal Independence Payment Bill will provide 13-weeks of additional financial security to existing claimants affected by changes to the PIP daily living component, including those who their lose eligibility to Carers Allowance and the carer’s element of Universal Credit.
The 13-week additional protection will give people who will be affected by the changes time to adapt, access new, tailored employment support, and plan for their future once they are reassessed and their entitlement ends.
This transitional cover is one of the most generous ever and more than three times the length of protection provided for the transition from DLA to PIP.

Link to Announcement
 
MEA Comment
The ME Association is deeply concerned by the government’s continued claims that its proposed welfare reforms will “protect the most vulnerable.”  For people living with ME/CFS and Long Covid - many of whom face complex, fluctuating* symptoms (whereby symptoms are always present ranging in severity) - the proposals risk cutting vital support.
Changes to Personal Independence Payment (PIP), including the new “4-point rule” and the removal of the Work Capability Assessment (WCA), could result in many losing access to both PIP and health-related elements of Universal Credit.  The protections currently built into the WCA - particularly Regulations 29 and 35 - are crucial for people whose health would be seriously harmed by work or work-related activity.  These safeguards are not included in the PIP assessment and have not been replaced.
 
We are also concerned that some of the most serious proposals, such as the new impairment threshold, have not been consulted on. It is unclear how the government believes these changes will support disabled people to work or live independently - especially when support is being removed without appropriate alternatives in place.
In response, the ME Association is launching a national survey to gather direct testimony from people affected by these changes.  This includes people with ME/CFS, Long Covid, and those who care for them.  We believe disabled people must be at the heart of this conversation - and our survey is one way of making sure their voices are heard.
 
We have submitted detailed evidence to the Work and Pensions Select Committee and will also respond in full to the government’s Green Paper consultation. In every part of this work, we are calling for reform that is led by lived experience, grounded in evidence, and shaped with disabled people - not imposed upon them.
We urge the government to pause and listen.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
Ella Smith, Welfare Rights Consultant,, The ME Association
 
Further Information

• The ME Association’s Position Statement on the Proposed Welfare Reforms  | June 18, 2025
• Fighting for Fairness: We Need Your Voice to Challenge Benefit Reforms | June 19, 2025
• The ME Association: Parliamentary Debate: Disabled People in Poverty | June 19, 2025
• The ME Association: Welfare Reforms: The ME Association strongly opposes government press release! | June 20, 2025

 
 
Action for ME (AfME) announce -
The UK Government sets out its Spending Review - our response
11 June 2025
Earlier today, the Chancellor set out the Spending Review and we are encouraged to hear the Chancellor’s plans to invest in the NHS. It is clear that this investment is needed, alongside a greater understanding of ME amongst healthcare professionals.
 
However, the Government’s proposed welfare reforms pose serious risks to people affected by ME. The views and experiences of the community, as part of the Green Paper consultation, must be listened to and acted on to prevent vital support being taken away from those who need it.
Furthermore, the Chancellor confirmed that annual funding for research and development will rise to £22 billion by the end of the spending review, representing a record level of public investment in UK R&D.
Biomedical research into ME is urgently needed to understand the disease, develop diagnostic tests and find treatments. We are calling on the Government to take urgent action to ensure a strategic approach for research into ME and associated post-infectious illnesses, including long Covid.
We will continue to work closely with our Parliamentary Champions and the APPG on ME to ensure that your voices are heard.
 
 
 
Have you contacted your local MP explaining your concerns?
Further information, plus the MEA’s template letter is available on our website, at -
Welfare benefits - Stricter PIP eligibility, and Changes to ESA assessments

•  Action for ME  •  Benefits 
•  Government U.K.  •  M.E. Association 
•  MP  •  Parliament U.K. 

Have you contacted your local MP explaining your concerns?
The MEA received a letter from the Secretary of State for Work and Pensions.
 
The ME Association’s website contains a template letter for your use,  -
Write to your MP about the recent announcements on Welfare Reform 
May 29, 2025
 
On Tuesday (18.03.25), the Rt Hon Liz Kendall MP, Secretary of State for Department of Work and Pensions (DWP) announced the governments plans for welfare reform.
Over 120+ organisations and charities are concerned that these changes, especially the decision to change the eligibility criteria for PIP and make it even more difficult to obtain, will have a devastating affect on disabled people and the communities they represent, pushing many into financial hardship.
 
We know from a Scope report (2024) that life costs more for disabled people. Many people who have ME/CFS and Long Covid, which can both be a disabling and very debilitating condition already live in poverty as a result of these extra costs. Therefore the impact of disability benefits cuts would be disastrous.
The ME Association is actively challenging the government’s proposed welfare reforms and has launched a major project to defend the rights of people with ME and Long Covid.
We will shortly be publishing a formal position statement, meeting directly with key policymakers including the Minister for Disabled People, and launching a national survey to gather vital evidence from our community.
This work is a priority for the charity, and we’re committed to ensuring the specific needs and experiences of people with ME and Long Covid are clearly represented and heard.
Write to your MP
 
Ella Smith, Welfare Benefits Adviser to the ME Association has kindly drafted a template letter which can be used to write to your MP.  Please consider writing to your MP (List of Herefordshire and Worcestershire MPs) to express your personal concerns using our Template Letter available for your use. 
 
 
The ME Association (MEA) wrote to State for Work and Pensions.
MEA writes to the Rt Hon Liz Kendall,
Secretary of State for Work and Pensions  - The ME Association
March 17, 2025
Summary

• The ME Association (MEA) raised concerns to Liz Kendall about press reports indicating cuts to welfare benefits, stricter PIP eligibility, and changes to ESA assessments, which would negatively impact people with fluctuating conditions like ME/CFS and Long Covid.
• Despite years of collaboration with the DWP, assessment procedures for people with fluctuating conditions remain inadequate, often leading to unfair denials of benefits.
• The MEA calls for the government to reconsider proposed welfare reforms, as they could push individuals with ME/CFS into poverty and debt, and urges consultation with medical charities before implementing changes.

The MEA has written to Liz Kendall to express our deep concerns about press reports which indicate that she is about to announce cuts to some welfare benefit payments along with making it far more difficult to claim PIP/personal independence payment. We have since received acknowledgement of this letter from Liz Kendall's office.

Letter to Liz Kendall
15 March 2025
Dear Secretary of State
Welfare benefit reform
Along with representatives from several other medical charities that represent people with fluctuating and long term medical conditions (examples include AIDS/HIV,  inflammatory bowel disease, multiple sclerosis and rheumatoid arthritis), the ME Association (MEA) has worked with the DWP over many years to try and make the eligibility criteria and assessment procedures for sickness and disability benefits more fair and effective for this group of people.
 
In particular we have taken the view that where people are clearly unable to work they should be supported by the benefits system and not forced into trying to obtain work that they cannot do and that employers do not even want to offer to them. 
Equally, where someone is or may be able to carry out some form of work there must be far more incentives for employers to take on people who may require periods of sick leave and modifications to their duties in order to work along with flexibly in the benefit system to allow for a flexible or part time return to work or a failed return to work.
 
For your information I attach of copy of the very comprehensive report that the DWP Fluctuating Conditions Group produced on the challenges facing people with these conditions when it comes to applying for work related DWP benefits and the use of the Work Capability Assessment – which we understand will form part of the government review.
Unfortunately, despite our efforts over the years, which have also included working with Professor Malcolm Harrington on his major review of the Work Capability Assessment, the procedures for assessing and claiming ESA and PIP are still not fit for purpose if you have a fluctuating medical condition – where the severity of ill health and disability often varies throughout the day, from day to day and from week to week.  
As a result of having assessment procedures that do not meet the needs of people with fluctuating medical conditions, many people with moderate or severe ME/CFS, and Long Covid, are still being refused sickness and disability benefits.   They are only succeeding when there is a reconsideration of their case or they go to appeal - where the high rate of success helps to confirm that the initial assessment procedures are just not working.
People with ME/CFS and Long Covid are therefore fearful and frightened by the press reports this past week which indicate that the government is about to announce major welfare benefit reforms and spending cuts which will include stricter eligibility criteria for PIP, a reduction or freeze in the level of payments, changes to the ESA Work Capability Assessment, and reductions in payments relating to Universal Credit.
 
We are also surprised and disappointed to find that medical charities representing people with long term conditions have not been consulted about these changes.
The purpose of PIP is to provide people who have significant problems with care or mobility with the financial support which helps them to improve their quality of life and in some cases with the costs of returning to some form of employment - something that the government is obviously keen to encourage.  
Making it even more difficult to claim PIP, or reducing the financial support it provides, is going to have a very detrimental effect on people with ME/CFS and will result in some of them being forced into poverty and debt.
 
We are therefore calling on the government to listen to people with fluctuating medical conditions like ME/CFS and urgently reconsider the adverse effects of making these changes to PIP.
At the same time we do obviously recognise the case for reforming some aspects of the welfare benefits system.  So we are very willing to collaborate with the DWP to achieve meaningful change that will help people with ME/CFS. However, this must involve understanding and addressing the diverse needs of people who are ill and disabled, and not with cuts that could undermine their security and dignity.
Thank you for considering our concerns.  
We look forward to hearing from you and hopefully working with you on a benefit strategy that will help people with fluctuating medical conditions who are capable of returning to work and not penalise those who are genuinely unable to work.

Yours sincerely
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS

DWP Replies to Dr Charles Shepherd’s Letter
Regarding Welfare Cuts  The ME Association.
April 3, 2025
On the 15th of March, 2025, Dr Charles Shepherd, MEA Hon. Medical Adviser, wrote to Rt Hon Liz Kendall to express the ME Association's deep concern around press reports indicating she would announce cuts to welfare benefits. This letter was sent prior to the the parliamentary announcement and the release of the Green Paper on 18th March.
The ME Association intends to send a follow up letter to Rt Hon Liz Kendall and provide a response to the Green Paper consultation.

Letter
On the 3rd of April, the DWP replied - as follows:
Dear Dr Shepherd,
Thank you for your recent correspondence about benefit reforms.
The Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper was published on 18 March 2025. The consultation sets out plans and proposals to reform health and disability benefits and employment support.
 
The Green Paper is an important staging post on a journey of reform, building on the vision and approach set out in the Get Britain Working White Paper in November 2024. It sets out our vision, strategy and proposals for change.
The Government wants to improve and refine its plans by consulting on certain measures as described within the paper. It is committed to putting the views and voices of disabled people and people with health conditions at the heart of everything it does.
 
The consultation - Pathways to Work: Reforming Benefits and Support to Get Britain Working - can be responded to via a Microsoft Form using the following link:  Green Paper Consultation
By emailing [email protected] or; by post at: Pathways to Work Consultation, Disability and Health Support Directorate, Department for Work and Pensions, Level 2, Caxton House, Tothill Street, London, SW1H 9NA.
Further details about the Green Paper can be found by accessing the following link: Information on Green Paper
 
Yours sincerely,
Head of the Ministerial Correspondence Team
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS

Further Information

• GOV UK: Biggest shake up to welfare system in a generation to get Britain working | 18th March 2025
• DWP: Pathways to Work: Reforming Benefits and Support to Get Britain Working  | March 2025
• MP Jo Platt: Parliamentary Question to DWP: Employment: ME/CFS and Long Covid  | 17th March 2025
• The ME Association: MEA signs Scope’s open letter to the chancellor regarding welfare cuts  | 18th March 2025
• Disability Rights UK: Green Paper published – £5 billion cuts proposed by scrapping the WCA and changed PIP assessment  | March 2025
  
• Guardian: Councils and NHS could face millions in extra costs due to disability benefit cuts | 24 March, 2025
  
• Disability Policy Centre: Welfare reforms likely to deliver no significant savings in “all pain and no gain” scenario, according to new analysis. | 24 March, 2025
  
• The ME Association: Science Norway: Almost no ME/CFS patients return to work | 25 March, 2025
• GOV UK: Government to listen, learn and deliver as consultation on transformational welfare reforms begins | 7 April, 2025
  

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.

•  25% M.E. Group  •  Action for ME  •  A.P.P.G   •  M.E. Association  •  MERUK  •  MP   •  Parliament U.K.