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.

Herefordshire & Worcestershire Post Viral Fatigue Service for adults with ME/CFS & L/C. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long Covid).
 
NHS ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and LC (Long Covid) Specialist Services Update (May 2026).
 
Marina Townend, Service Lead/Specialist Occupational Therapist, Herefordshire & Worcestershire Post Viral Fatigue Service, shares updated news with the Worcestershire ME Social Group during ME Awareness Week (May 11 - 17).
 
I'm sorry I haven't managed to get along to any recently - unfortunately, your meetings have clashed with other things but I have the August date in my diary.  Since I last provided an update, we have recruited a dietitian to join the wider multi-disciplinary team.  Ines Canteiro starts next week and will be working with the service one day/week.  She will, of course, need a good induction but we hope Ines will develop some resources for the service, run some workshops and offer some 1:1 input to patients in the future.
 
The new ME/CFS & LC team for the two counties, from May 2026, is:
Marina Townend (Service Lead/Specialist Occupational Therapist) full-time
Tabitha Richards (nurse and team lead) full-time
Dr Sarah-Jane Lowe (GP with a specialist interest) part-time
Rashmi Bansal (physiotherapist) full-time
Dr Helen Ayres (psychologist) part-time
Dr Mya Krishnan (psychologist) part-time
Sara Young (occupational therapist) full-time
Janet Piper (occupational therapist) part-time
Ceri Howell (therapy assistant) full-time
Ines Canteiro dietitian) part time
Kate Jewell (administrator) full-time  Kirsti Barnes (administrator) part-time
 
We have also recruited several Participation Partners who work with us on a sessional basis.  Our Participation Partners all have lived experience of ME/CFS and/or Long Covid, and have been through the service.  They are joining our group sessions to talk about their experiences and what they have found helpful in managing symptoms.  The Participation Partners add real value to the service and have received very positive feedback from attendees and staff who are facilitating the sessions. 
 
There are now almost 560 patients in the service, all living across Herefordshire and Worcestershire.  Ages range from 16 to 86, with varying levels in the severity of their symptoms.  We continue to receive high rates of referrals (30-40 per month), which means that people are unfortunately having to wait longer for an assessment than we would like. Current waiting times are between 18 and 40 weeks, depending on who is the most appropriate practitioner to offer the initial appointment.  Longest wait times are for those who don't currently have a diagnosis.   Confirming that the information on the referral form is all correct still. 
 
There is always so much going on in a busy service!  I know things are rarely perfect, but it is pleasing that we continue to receive a lot of thanks and appreciation for the input we provide to people with ME/CFS/LC and their families and carers. 
 
Just a note about the clash of diary dates you mentioned previously - we run our regular Ways to Wellbeing groups on a Wednesday morning, and the Recovery and Management group on the 1st Wednesday of alternate months. This is due to the working days of our part-time staff, to offer the most flexibility and avoid having to cancel groups if there is staff sickness, annual leave, etc.  People would only attend a 9 week block of Ways to Wellbeing groups once so it shouldn't be an ongoing problem for them to attend the social group if they wanted to.

The Ways to Wellbeing groups have always been part of the Post Viral Fatigue Service.  It is a 9-week programme focusing on a different symptom each week.  Patients choose the relevant sessions, depending on the symptoms they experience.   We do talk about the social group in the introductory session too, so I would like to think you might get
more people coming along after that!
 
Hoping for a successful ME Awareness week, with more people having a good understanding of the condition and how it impacts people.
 
 
Marina Townend
Service Lead/Specialist Occupational Therapist
Post Viral Fatigue service
Malvern Community Hospital, 185 Worcester Road, Malvern, WR14 1EX
Tel. 01684 612671

Pdf copy of this blog:

Herefordshire & Worcestershire Post Viral Fatigue Service for adults with ME/CFS & LC. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long Covid).
 
NHS ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and LC (Long Covid) Specialist Services Update (August 2025).
 
 
From the GP referral form on the Herefordshire and Worcestershire Post Viral Fatigue Service website:  'The PVF Service has access to a specialist GP and Consultant to support the confirmation of a diagnosis where required and provide specialist advice and review if necessary.  The GP specialist will triage new patients into the service and refer to the consultant where appropriate. Any complications or complexities will be managed by the Consultant.' (May 2025).
 
The Herefordshire and Worcestershire Post Viral Fatigue Service can be contacted through Malvern Community Hospital. (Contact Information: 01684 612671  [email protected]  and their webpage Herefordshire and Worcestershire Post Viral Fatigue Services).  The Herefordshire and Worcestershire Post Viral Fatigue Service provides assessment and rehabilitation to support adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid (LC) to self-manage their symptoms.

Herefordshire and Worcestershire Post Viral Fatigue Service Update (August 2025)
Following received from Marina Townend (ME/CFS & LC Service Lead/Specialist Occupational Therapist).
 
The new ME/CFS & LC team for the two counties, from August 2025 is:
Marina Townend (Service Lead/ Specialist Occupational Therapist) full-time
Tabitha Richards (nurse and team lead) full-time
Dr Sarah-Jane Lowe (GP with a specialist interest) part-time
Rashmi Bansal (physiotherapist) full-time
Dr Helen Ayres (psychologist) part-time
Dr Mya Krishnan (psychologist) part-time
Sara Young (occupational therapist) full-time
Janet Piper (occupational therapist) part-time
Ceri Howell (therapy assistant) full-time
Kate Jewell (administrator) full-time  Kirsti Barnes (administrator) part-time
 
The Consultant supporting us is Dr Bruno Silva, based in the ME/CFS service at the Barberry, Birmingham.  He provides supervision and guidance each month, and will see the most complex patients if we need him to (but this will not be the norm).  
 
We have just advertised for a part-time dietitian too, so there may be someone else to add if we are successful in recruiting.  Although it looks like a lot of clinical hours, most people are part-time  - but we have certainly grown since I started in the ME/CFS service 10 years ago, and it feels very positive to have such a varied multi-disciplinary team. 
 
Regarding the DHSC ME/CFS Delivery plan, I welcome it's publication and think it is a bit of a landmark to have the condition recognised in this way.  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 and it feels important that that is publicly recognised. However I think most of us also feel disappointed that the plan does not offer sufficient urgency, funding or resources to achieve the stated aims.  As Ashley Dalton's foreword says though, it is a starting place not an end point. Hopefully it will also be useful to hold others to account and guide future activity.
 
Now that the team are fully in place, we will be able to start reaching out to GPs across Herefordshire and Worcestershire to provide awareness and training sessions, as agreed when the new service was commissioned. This fits in well with the delivery plan. 
 
It does feel like it has been an eventful time in the field of ME/CFS, with the publication of the Delivery Plan and the DecodeME results within a fortnight!  Progress will never be as quick as we want it to be but these feel like significant events that can be built on - and maybe finally there is more of an appetite and drive to do that by a wider group of people
 
I haven't managed to get along to the Social Group recently but I hope that once the new staff are fully inducted, I will be more able to drop in again (and may bring some new faces too!) .
Marina Townend, Service Lead/Specialist Occupational Therapist, Post Viral Fatigue service.
Malvern Community Hospital, 185 Worcester Road, Malvern, WR14 1EX, Tel. 01684 612671.

The Worcestershire M.E. Social Group website contains sections giving information about M.E./CFS, Long Covid and Fibromyalgia.
 
At the end of April 2024 the Group’s Symptoms of ME/CFS information sheet was updated with the "Symptoms for Suspecting ME/CFS" Section of Myalgic Encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management: NICE guideline [NG206], published on 29 October 2021, now included on the reverse.  A Symptoms of M.E./CFS blog is available giving full explanations. 
 
The Worcestershire M.E. Support Group produced a ‘Symptoms of M.E./CFS’ information sheet well over twenty years ago, and it continues to be available on our Group’s website in the About M.E. section.  Many people have found this information sheet useful when describing how they feel, and explaining their situations to doctors.

Pdf copy of this blog:

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. 

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and PCS (Post Covid) Services.
Herefordshire and Worcestershire Post Viral Fatigue Service..
 
To contact the Herefordshire and Worcestershire Post Viral Fatigue Service,
the Phone Number remains the same at Malvern Community Hospital - 01684 612671, the new email address is - [email protected].

Marina Townend, the Service Lead/Specialist Occupational Therapist of the Herefordshire & Worcestershire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services, has again been in touch updating us with forthcoming changes to the NHS Worcestershire ME/CFS Specialist Services).  Marina joined us on Wednesday, 9 April, at our afternoon café meeting, and explained that the following information was emailed to their patients last week, as a follow up to the previous mailing.

Good afternoon
Many thanks to everyone who completed the patient survey about the new model for the ME/CFS and PCS services. I am writing to share a summary of the feedback we received.
 
How you feel about the changes.
The perception of the changes seems mainly positive, with a small minority expressing concern that the change is financially motivated and that there will be less resources available for both patient groups. I want to reassure you that this is not the case. The commissioner in our Integrated Care Board recognises the impact that these conditions have on sufferers and has chosen to invest in this service at a time when many Trusts are closing LC services, and many have never commissioned an ME/CFS service.
 
Some people thought that the sharing of resources may be more efficient in an integrated service, with easier access and increased support. We believe and hope that this will be the case – although we do acknowledge that with the current pressure in the NHS, we may never have all the resources that we would ideally like!
 
Many people with ME/CFS felt encouraged that it will be easier for them to receive a diagnosis. Others noted the overlap between the conditions, and thought it would streamline the services and make it simpler for GP’s and referrers.
 
There were some concerns that the differences between the conditions might not be recognised or addressed. All diagnoses are coded, for monitoring and research purposes, and ME/CFS and LC each have different codes.  We try to address each person as an individual rather than by their diagnosis - something that is especially important with these conditions as they can vary hugely between each person.
 
 
What you’d like to continue:
- 1:1 support
- Information groups
- Group support
- Employment support
- Support for carers/ loved ones
- Peer support
-  We plan to continue with all these things in the new service, in the same or similar formats to now.
 
 What else you’d like:
    >Access to a wider MDT
We will have improved access to specialist medical care in the new service and will continue to build on this. We have recently employed a physiotherapist, who is due to start in April, and we are hoping to recruit a dietician. We will be able to refer all patients to the fast-track pathway for NHS Talking Therapies if counselling is required. You will also be able to see a specialist GP (hopefully in post by July).
 
    >Better referral pathways for tests and other specialists
This is currently being discussed, as we recognise that the current system (where we have to go back to your GP to request tests, investigations and onward referrals) can be slow and work-heavy for colleagues in primary care.
 
  >Raising awareness and education for GPs and other health professionals
Educational sessions will be planned when the new service is established. Some GP’s do not seem to be aware that there is specialist provision for ME/CFS/LC exist locally, so communication will be sent out to all practices about the new service, with details of what we offer and how to refer.
 
    >Faster access to the service
We apologise that some people have had to wait a long time to be seen, for various reasons. The new service will be more streamlined, and our aim is for all new referrals to be assessed within 10 weeks. Due to staff sickness and vacancies, there is a waiting list already so we will not be able to achieve this immediately.
 
   >On-going support for those who have the condition for a long time
We recognise that, although some people make a full recovery, many will experience long-term effects of ME/CFS and LC. Unfortunately, there is high demand for the service, and we are unable to support everyone within the service indefinitely. We will offer an on-line support group for people after discharge, with the hope of being able to expand to localised face-to-face meetings in future. We are also going to trial annual reviews for the more severely affected patients, recognising that many GP’s do not offer this, even though it is recommended in NICE guidelines for ME/CFS.
 
      >More access to face-to-face appointments
Although much of our work is currently on-line, to help manage symptoms of fatigue, face-to-face appointments can be requested and are offered where clinically indicated. There is likely to be more capacity for this in the new service, with some clinics planned.
 
      >Patient-led support
A new development in the combined service will be Participation Partners. These are people with lived experience, who will be trained and supported to help others. We hope that a Participation Partner will be present in all our groups, and may take a lead in developing options for peer support in future.
 
     > A way to re-access the service
We have agreed with commissioners that patients have the option of self-referring directly to the service for 6 months after discharge. This bypasses the need to go via your GP, unless symptoms have changed significantly.
 
    >Follow up after groups
In the new service, all patients will be offered a 1:1 review after completing attendance at the group sessions. This will allow us to review what has been helpful and is working well, as well as identifying areas where more support may be required and making a plan to address these.
 
The name of the new service
Responses to the suggestions made were very evenly spread. Having read all the comments, including other suggestions, it was decided that the new service will be called the Post Viral Fatigue Service. We appreciate this will not reflect everyone's experience of ME/CFS or LC (e.g. you may have ME/CFS without having had a virus) but the vast majority will fit into that description. The service is for everyone with ME/CFS and LC, whether or not symptoms followed a viral infection, and GP's will be aware of that.
 
 
Over the next few weeks, we will be gradually transitioning to the combined service but you shouldn't notice any significant changes to your care. We will continue to be based at Malvern Community Hospital, with the same phone number. We do have a new email address though: [email protected]  Please use this for future correspondence.
 
 We greatly appreciate your comments and suggestions, and will use them in our quest to improve the service going forwards. There will be on-going opportunities to provide feedback via Care Opinion (more information about this shortly!) so please keep in touch and let us know how you are finding things.
 
​Kind regards
Marina
Marina Townend
Service Lead/ Specialist Occupational Therapist
Post Viral Fatigue service
Malvern Community Hospital | 185 Worcester Road | Malvern | WR14 1EX
Tel. 01684 612671

National Covid-19 Day of Reflection
 
Government Announcement -
Covid 19, Day of Reflection, 9 March 2025 
Sunday 9 March 2025 is the Day of Reflection across the UK for the COVID-19 pandemic.
It is an opportunity to come together to remember those who lost their lives since the pandemic began and to honour the tireless work and acts of kindness shown during this unprecedented time. 
2025 marks five years since the pandemic began and we continue to honour and remember those affected.  People and communities are invited to come together on the COVID-19 Day of Reflection, to mark the day in ways that feel meaningful to them. 
 
 
A minute's silence will take place in front of the Guildhall in Worcester on 8 March
2 March 2025
City to mark five years since start of pandemic 
A remembrance event to mark five years since the start of the Covid-19 pandemic is set to take place in Worcester.  The town will join the rest of the UK on 8 March to commemorate the national Covid-19 Day of Reflection.  Mayor of Worcester, Mel Allcott, will give a short speech on the steps of the Guildhall at 12:00 GMT on the day, followed by a minute's silence.
 
The Guildhall will also be illuminated yellow during the week leading up to the Day of Reflection.  Ms Allcott said: "The Covid-19 pandemic had a profound impact on everyone.  "As the years go by since the peak of the pandemic, it may seem as though Covid-19 is becoming a distant memory.  "However, for those who lost loved ones, the National Covid Day of Reflection offers a moment to remember those who passed away."  Residents are also being encouraged to sign an online book of remembrance and leave a message about the loved ones they lost during the pandemic.
 
 
Thank you for taking part in Day of Reflection
 
Thank you to all who took part in Day of Reflection in 2024. It was incredibly moving to see communities, organisations, groups and schools coming together to reflect, remember and support one another.
We are pleased to announce that the Government have announced a new date for 2025. The Day of Reflection will take place on 9th March 2025. The Department for Culture, Media and Sport will be leading on the event and have a new website with further details.
Marie Curie will be sharing plans in the January and will continue to raise awareness of the impact grief has on our lives and the need for better end of life care and support for all.
 
 
International Long Covid Awareness Day.  15 Mar 2025, 10:00 - 16:00
Join us online or in person at, 20 Cavendish Square , Marylebone , London, W1G 0RN
 
International Long Covid Awareness Day - Book now
Nursing and Covid-19: Past, Present and Future
March 2025 marks five years since the World Health Organisation declared Covid-19 a global pandemic.  On March 15, International Long Covid Awareness Day, the Royal College of Nursing (RCN) will mark this five year milestone by paying tribute to the vital role that nursing and the wider health and care workforce played during the height of the pandemic.  We will also take the time to recognise the varying and lasting impact of the pandemic on the nursing workforce including long Covid.
The event will be an opportunity to share and shape good practice in supporting the nursing workforce as it continues to come to terms with the impact and aims to leave the audience with a positive and empowering vision of the future.
 
Who should attend?
The event is open to all RCN members but may be of special interest to those who are living with long Covid, those working in occupational health or infection prevention and control, those with line management responsibility and RCN workplace representatives.
Programme:  Further information on the programme will follow.
Registration:  This event is open to RCN members only. It is free of charge and in person registration is available on a first come first served basis. Delegates will be able to join online to watch and participate via MS Teams if they are not able to attend in person.
Click on the ‘Register your interest’ button above and complete your details to be notified when booking opens.
 
 
Nuffield Department of Primary Care Health Services
International Long Covid Awareness Day: Launch examines patient perspectives on COVID-19
16 March 2023
On Wednesday March 15th - the first International Long Covid Awareness Day -researchers from the University of Oxford’s Nuffield Department of Primary Care Health Sciences launched an online discussion of four qualitative studies exploring patient experiences of the COVID-19 pandemic.
 
Teams from Oxford, Edinburgh, Stirling, Aberdeen, Cambridge, and the Open University conducted several projects between 2020-22. These connected studies explored different dimensions of patient and family experience, and utilised interview-based methods to understand illness experiences, information and support needs and experiences seeking healthcare. They bring together findings of over 200 interviews conducted during the Covid-19 pandemic. Each study has an informative public-facing section on the website Healthtalk.org, where visitors can hear and learn from the experiences of other people living with Long Covid.  

•  Coronavirus (COVID 19)  •  Government U.K.  •  Local News 
•  N.H.S.  •  Post COVID Syndrome (Long COVID)  •  Worcester City Council

Future Changes combining the local Services. 
Please respond with your suggestions this week.
 
Marina Townend is the Service Lead/Specialist Occupational Therapist, of the Herefordshire & Worcestershire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services.  She has been in touch updating us with forthcoming changes to the NHS Worcestershire ME/CFS Specialist Services). 
 
Marina informed us that this week, an email went out to all patients on their current ME/CFS and PCS caseloads, and the Recovery and Management (RaM) Group - totalling approximately 400 people, giving them a survey to complete.

Good morning,
 
At the moment in Herefordshire and Worcestershire there are two separate NHS services for people living with post-viral syndromes.   One for people with Post Covid Syndrome (PCS) (sometimes called Long Covid) and another for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).
 
There is now a plan to bring the two services together which will be helpful for a number of reasons:

• Less Covid testing has meant some people cannot access either service because they don’t have a clear diagnosis.

• There is an increasing number of people who meet the criteria for both conditions.
• GPs sometimes aren’t sure which service to refer patients to as they have very similar symptoms.  The new service will be easier to refer to, and may allow more people to access treatment and support.

• The Long Covid Service has been funded on an annual basis up until now.  The new service has long term funding which means patients with Long Covid will get the same offer of longer-term support like those with ME/CFS. 
• It will allow patients with ME/CFS and Long Covid to access specialist GP and Consultant input which is not always possible now.

 
We know this change might be worrying for you and the people who support you.  We want to let you know that many of the staff already work across both services and are knowledgeable about both ME/CFS and PCS.  We will continue to treat people based on their symptoms and needs, using the same group work and 1:1 support we offer now.
 
We want a service that is helpful to all, and those who care for you.  To do this we want to know how people feel about the proposed changes,  Please complete the attached ME/CFS specialist services survey by the END OF FEBRUARY if you can.   If you need help to fill it in or would like to talk to us about it instead, please let us know.

The Worcestershire ME/CFS Therapy Team can currently be contacted through Malvern Community Hospital. (01684 612671   [email protected] and their webpage NHS Worcestershire ME/CFS Specialist Services).
 
 
Marina continued with further news about the local combined services.  She explained that all residence of Herefordshire and Worcestershire, with Post Covid Syndrome (PCS) (sometimes called Long Covid), or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), are invited to share their thoughts. 
 
By the END OF FEBRUARY, please email [email protected]  with your comments or suggestions.  Please include the subject "combined services".
Please include how you feel about the plan bringing the two services together to create one service, and what would you like to see the new service do?
Have you any suggestion what to call the new service?  Maybe, Post Viral Fatigue service;  Living well with ME/CFS and Long Covid;  or Wellbeing for Long Covid and ME/CFS (the WELCOME service);  or your further thoughts.
 
Marina, confirmed that there will be wider communications going out in the next few weeks, including to the general public, GPs and other health professionals.  We also understand from Marina that it is hoped to follow this up with some GP training, including around the NICE guideline recommendations that patients receive an annual review.  Also, before the new combined service goes live on 1st April, the ME Association (MEA) and British Association of Clinicians in ME/CFS (BACME) will be updated with the Worcestershire and Herefordshire.NHS Services for people living with post-viral syndromes.

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

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

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

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

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

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

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

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

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