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 

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:

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 

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.

Building an NHS that’s there for people with Long Covid and ME.
 
Action for ME (AfME) and the ME Association (MEA), both give full details of this new campaign on their websites.

From the ME Association (MEA) website:
You can support #ThereForME by:

1. Signing the open letter by 02 August (open to all ME/LC patients and carers in the UK).
2. Sharing the policy brief and #ThereForME campaign on social media.
3. Writing to your MP to share the policy brief and recommendations.
4. Subscribing to the #ThereForME substack to stay updated on the campaign.
   

 
AfME announce -
#ThereForME campaign
July 23, 2024
#ThereForME is a new campaign led by patients and carers calling for an NHS that’s there for people with ME and Long Covid. The new Labour Government has come into office with a powerful promise: to transform a broken healthcare system, building an NHS that is fit for the future.
 
To achieve this, the NHS must deliver for people with Long Covid and ME.
#ThereForME have published a new report, drawing on data from over 300 people with Long Covid/ME (+ their carers) and endorsed by 15 organisations, including Action for M.E.
 
 
The MEA announce -
Building an NHS that’s there for people with Long Covid and ME
July 23, 2024
 
ThereForME is a patient- and carer-led campaign calling for an NHS that’s there for people with ME and Long Covid. The new Labour Government has come into office with a powerful promise: to transform a broken healthcare system, building an NHS that is fit for the future.
 
To achieve this, the NHS must deliver for people suffering with Long Covid and ME. We have published a new policy brief, drawing on data from over 300 people with Long Covid/ME and endorsed by 15 organisations including the ME Association.  We’re calling for a transformation in care for people with Long Covid and ME: an NHS that’s there for them when they need it, offering safe care and access to the best that modern science can offer. 
 
 
Sajid Javid, former MP for Bromsgrove.
AfME announce
Sajid Javid in The Times
July 20, 2024
Ahead of the landmark inquiry into the death of Maeve Boothby O'Neill, Sajid Javid, former MP and Health Secretary has called for Labour finish the work he began in 2021-22, stating…
Read more >>
 
 
How to support the campaign -
AfME and the MEA  both give full details of this new campaign on their websites.

•  Action for ME  •  Government U.K.  •  M.E. Association  •  N.H.S. 
•  Post COVID Syndrome (Long COVID) 

Below is an Invitation to participate in the development of a Clinical Assessment Toolkit for people with ME/CFS, and the Clinical Services.
Stage 3: The ME Activity Questionnaire (MEAQ).
 
Adults in the UK, who have been diagnosed with Myalgic Encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) are invited to complete an online questionnaire.  This includes people whose ME/CFS was triggered by a Covid infection (i.e. Long Covid). 
 
The aim of the Clinical Assessment Toolkit is to help people with ME/CFS and Clinical Services identify, understand and quantify people’s symptoms and disabilities.  It will also support goal setting, treatment planning, and monitor changes.
 
The work is led by Prof Sarah Tyson (University of Manchester), who has ME herself.  Prof Tyson explains that the aim of this questionnaire is to measure activity levels, and ask about the adaptations people may make to manage symptoms, and/or energy levels.  This is the 3rd stage of a research study to develop a Clinical Assessment Toolkit for ME/CFS.
 
The survey for people with ME/CFS to test out the ME Activity Questionnaire (MEAQ) is now ready for recruitment by following this link -
https://www.qualtrics.manchester.ac.uk/jfe/form/SV_4GBQxvdf3mgdW1E

Patient Reported Outcome Measures (PROMs) in ME/CFS
April 9, 2024
This week, the ME Association's latest announcement on this subject, with a statement from Professor Tyson.
 
 
ME Association funds research for a new clinical assessment toolkit in
NHS ME/CFS specialist services
May 8, 2023
In May last year, the ME Association (MEA) initially announced this research project, with a message from Professor Sarah Tyson, University of Manchester, and a response from Dr Charles Shepherd, Hon. Medical Adviser to the ME Association.

•  Coronavirus (COVID 19) 
•  M.E. Association
•  Post COVID Syndrome (Long COVID) 
•  Research 

World ME Day  - The disease where pushing harder can make you sicker.
On May 12th each year, World ME Alliance focuses on learning about, raising awareness of, and campaigning around Myalgic Encephalomyeltitis.
 
World ME Alliance - (We are a unique alliance of ME organisations from around the world.  Our membership is made up of senior leads/representatives from national ME organisations, working together to achieve change for people with ME at a national and international level.) 
For 2023 World ME Alliance are focusing on the key aspect of ME that everyone should know about: that pushing harder can make you sicker.  The technical term for this is post-exertional malaise (PEM).
Post-exertional malaise (PEM) is something that everyone with ME experiences. 
It is a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness and is the hallmark symptom of ME. For some patients, sensory overload (light and sound) can induce PEM. PEM intensifies the severity of symptoms and may last days, weeks, or permanently.  The symptoms typically begin to worsen 12 to 48 hours after the activity or exposure.
 
The World ME Alliance website gives news from around the world, and suggestions as to how you can be involved.
 
 
ME Research UK publicise - Walk for ME 2023 - 
 
The aim of Walk for ME is to get as many people as possible - especially the family and friends of those affected by ME -  to do a sponsored walk, run, swim or ride of whatever length they feel comfortable with.
There is no minimum distance, no targets, and, although it runs principally through ME Awareness Week (2nd week in May), no set dates. You choose when you wish to walk, the distance, the location and the charity to support.  No matter what you do step-by-step, you will be supporting a great cause and also raising awareness with every stride.
 
It is hoped that as many friends and loved ones as possible will do a sponsored walk or other sponsored event during ME Awareness Week, although you can also do a walk, run, swim or ride at any other time if you prefer.
“The whole idea is that the friend or family member is doing something that their loved one would love to be able to do but can’t.“
Further information on the Walk for ME Just Giving page.
 
 
#MillionsMissing 2023! Announce -
#MillionsMissing 2023 will be held on May 12, 2023, at the Washington Monument in Washington, DC.  The event will feature an art installation and a press conference. 
#MEAction will host #MillionsMissing 2023 in partnership with Body Politic to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated complex chronic diseases.
The pandemic showed the public what people with ME already knew: that the government, our healthcare systems, and society at large have systematically deprioritized people with infection-associated chronic illnesses.
The #MillionsMissing 2023 website explains how you can see the press conference, and become involved.
 
 
Action for M.E. (AfME) announce -
Blue Sunday;  The Tea Party for M.E.; 14th May 2023.
 
Champion fundraiser Anna Redshaw’s Blue Sunday Tea Party is celebrating its 10th anniversary in 2023 and has so far raised over £70,000 for M.E. charities across the world. Join Anna and Action for M.E. this May to raise vital funds for people living with M.E., whilst enjoying tea, cake and community.
Anna has been running the Blue Sunday Tea Party for M.E. since 2013, as a way to fundraise but also to break the isolation so often experienced by people with M.E. You can read more about how the Blue Sunday Tea Party started on Anna’s blog.
Full information on How To Take Part available from AfME 
 
 
The ME Association (MEA) announcement -
ME Awareness Week - pleasant surprises from the Gloucestershire Friendship Group -
 
If paradise could be twice as nice, you’ll never find a better bunch than the Gloucestershire ME/CFS Friendship Group. They’ll be holding their annual ME Awareness Week bash on Saturday, 13th May and this year they’ve got a couple of surprises up their sleeves.
That afternoon, members will be out in force in Quedgeley Community Centre, near Gloucester, for a natter, a cuppa, a slice or two of some good home-bakes and a raffle stocked with over 20 prizes. The event will be held between 1.30 and 3.30pm.
 
 
Watch out for further announcements during week, plus a reminder -
Please join us during M.E. Awareness Week, when we look forward to greeting Marina Townend, Specialist Occupational Therapist/Team Lead, of the Worcestershire & Herefordshire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services.
 
Our Afternoon Café Meeting will be held on Wednesday, 10 May, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  Join us in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us whenever it suits you.
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
Marina Townend, recently updated us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services.  This is given in our recent Worcestershire NHS ME/CFS Local Services News blogs in April and March .
 
 
BACME (The British Association of Clinicians in ME/CFS) which is a multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS, also explains -
Herefordshire and Worcestershire ME/CFS Service
The service supports people with a confirmed diagnosis of ME/CFS, age 18 and over, who have a GP based in Herefordshire or Worcestershire.  It offers therapeutic intervention by Occupational Therapists and Psychologists on a 1:1 and group basis, much of which is provided virtually (video or telephone call), although clinic appointments are available if preferred.  We can also undertake home visits if clinically indicated.


•  Action for ME  •  Hereford  •  Local News 
•  #MEAction  •  M.E. Association  •  Meetings 
•  MERUK  •  N.H.S.  •  Post COVID Syndrome (Long COVID)  
•  Worcestershire •  Worcestershire M.E. Social Group

The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.      
This is a specialist part-time service that delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire.
 
 
At the end of March, we received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services, and responding to our queries.  Marina hopes to be with us at our next Worcestershire M.E. Social Group Afternoon Café Meeting (see end of this blog).
 
 
Changes to the Worcestershire NHS Service, following the revised NICE (The National Institute for Health and Care Excellence) Guidelines, published in October 2021
Marina informed us -
We have gone through the changes in the revised guidelines as a team, and developed an action plan to ensure that we are following them.  Some of these actions are still work in progress as I'm sure you can appreciate that it is time-consuming, and we are already under a huge amount of pressure carrying out our day-to-day work. However, we check in each team meeting to make sure these have not been forgotten and are still progressing.
Actions included changing our language to ME/CFS from CFS/ME (in written format and when speaking), updating our referral protocol and service literature to ensure that they reflect new guidelines, developing a workshop for carers, and compiling a care and support plan.  We are in on-going conversations with our commissioner about medical cover and also regarding how we work with people who are severely affected.
We were not offering CBT or GET as a 'cure' for ME/CFS so our approach to therapy has not changed - we see these interventions as beneficial for some people, at the correct time, and if applied in an appropriate manner. 
 
 
The Current Worcestershire NHS ME/CFS Specialist Services, -
We recently mentioned to Marina -
On the NHS ME/CFS Service webpage, it states - “we work as a multi-disciplinary team with Occupational Therapists, Physiotherapists and Psychologists”.
Marina’s response included -
We have Nikki Mills (Physiotherapist) working in the Post Covid team 1.5 days/week.  She doesn't cover ME/CFS, but will offer guidance and resources to the team at times.  We are very much hoping to recruit a physiotherapist still and are in the process of going to recruitment again.
The PCS service also has access to Carrie Garrett, a Speech and Language Therapist, who offers us approximately 1 session/month.
 
 
Diagnosing Long Covid
Marina informed us -
Diagnosing Long Covid is more straight forward than ME/CFS, and GPs seem to feel more comfortable with this as many people have had a positive Covid test, or recognise the symptoms of the Covid virus.  If other possible causes of on-going symptoms have been ruled out, Long Covid is diagnosed by the GP.
This situation is likely to change, however, as testing is reduced, and new variants have different symptoms which are maybe less recognisable as Covid-19.  We anticipate that there will be more referrals to the ME/CFS service, and hope that the distribution of funding will reflect this.  It is one of the reasons why it has been decided that the PCS service should sit under the umbrella of the ME/CFS service, to allow some flexibility with this.  Referral to the PCS service is mainly via GPs, but other clinicians sometimes refer as well.
 
 
Previous news from Marina Townend is available from our blog last month.
 
 
Next Month
Marina informed us -
I am hoping to come to the Social Group on 10th May.  I look forward to seeing you again and will be very happy to answer any questions then. 


Please join us, when we look forward to greeting Marina at our next Afternoon Café Meeting. This will be held during ME Awareness Week on Wednesday, 10 May, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.
 
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.
 
See also from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021

•  Hereford  •  Local News 
•  Meetings  •  N.H.S. 
•  N.I.C.E.  •  Post COVID Syndrome (Long COVID)  
•  Worcestershire  •  Worcestershire M.E. Social Group