Worcestershire M.E. Social Group
  • Home
  • About Us
    • Contact Form
  • About M.E.
    • NHS in Worcestershire
  • Meetings
  • News Blog
    • View Blog Categories
    • News feeds
    • News Archive
  • Links
  • Search
  • Benefits

Future NHS Services for people living with post viral syndromes in Worcestershire and Herefordshire (Update).

11/4/2025

 
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


•  Hereford  •  N.H.S.  •  N.I.C.E.  •  Post COVID Syndrome (Long COVID)  •  Worcestershire

9 March: National Covid-19 Day of Reflection and 15 March: International Long Covid Awareness Day.

3/3/2025

 
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 NHS services for people living with post-viral syndromes in Worcestershire & Herefordshire

20/2/2025

 
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.
•  Hereford  •  M.E. Association  •  N.H.S.  •  N.I.C.E. 
•  Post COVID Syndrome (Long COVID)  •  Worcestershire

Support the new #ThereForME campaign

25/7/2024

 
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) 

ME/CFS Research:  request from organisers for participants

11/4/2024

 
Below is an Invitation to participate in the development of a Clinical Assessment Toolkit for people with ME/CFS, and the Clinical Services.
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 & ME Awareness Week (12 May, and 8 to 14 May)

8/5/2023

 
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

Worcestershire NHS ME/CFS Local Services News

15/4/2023

 
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

Worcestershire NHS ME/CFS Local Services News

9/3/2023

 
 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 week, we’ve 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 Worcestershire NHS ME/CFS Local Services, and responding to our queries.
 
Diagnosing ME/CFS,
Marina informs us -
Unfortunately, we are still unable to confirm a diagnosis of ME/CFS within this service, despite our continued efforts to resolve this situation.  Last year, a service level agreement was made with Birmingham and Solihull Trust whereby the Consultant in their ME/CFS service would assess 50 people within Herefordshire and Worcestershire who have a suspected diagnosis of ME/CFS. Once a diagnosis has been confirmed, we then provide a service to those patients.  This temporary arrangement has worked well but there isn't capacity to continue so we need to find another solution. 
We have been working closely with our commissioner to identify various options, and these are being discussed with GP's and at executive level within the Trust and ICB. I hope a model will be agreed soon and look forward to local people being able to receive a diagnosis (and therefore support and treatment) in a timely way.
In the meantime, GPs continue to refer to this service.  We advise about other options for diagnosis (as detailed on your website) and hold a list of the patients who are in this position.  We have also told people about the (paying) Healthcare service that Action for ME offer, but appreciate this is not an option for everyone. 
 
Action for ME’s "Healthcare Services for M.E." (mentioned by Marina above).
Following our merger with The ME Trust in February 2022, we are now able to offer Healthcare Services alongside our Information and Support, Family Support and Advocacy services.
Click on the menu for more information about each clinical service, including how to refer yourself and details of fees.
Action for ME give details of bursary support on their website.


Covid-19,
Marina informs us -
Since October 2021, the Post Covid Syndrome (PCS) service sits under the umbrella of the ME/CFS service.  Sara Young (OT) has been seconded to the Clinical Lead post, and Helen Ayres (Psychologist) and I both work additional hours to staff the PCS service.  Demand has been very high, and it has been difficult to recruit to the service due to the way that the government provides funding on an annual basis at present. 
 
The Current Worcestershire NHS ME/CFS Specialist Services, -
Marina informed us -
We have recently welcomed Ceri Howell, Therapy Assistant, to the team and she works full-time hours across both services. Mya Krishnan, Clinical Psychologist, also started with us last May, working 2 days/week. 
I am currently covering all the Occupational Therapy input in the ME/CFS service. Unfortunately, the team has been without full admin support for the past 14 months, which has been difficult but will hopefully improve soon.
We continue to offer 1:1 and group interventions, mainly (but not exclusively) on-line as the feedback we have received suggests that this is generally helpful to manage fatigue.  We are starting to get more referrals from Herefordshire GP's now, and still receive a steady stream of referrals for people with the condition who live in Worcestershire.
 
Marina also apologised for the time it has taken her to get back to us.  She explained - - it has been an even busier couple of months as I have had two 3rd year students (OT and Physiotherapy) with me and the team, and new staff members to induct.  All very positive but also time consuming...!
We are still making edits to our website, and any feedback is welcome as we are keen to improve it further, within the corporate constraints of design. I am aware there are various typos and some links that need updating, and I am still liaising with our Comms team about these so hopefully the website will be amended soon. 
I was very sad to hear about Warwick but I'm pleased that you have resumed your meet-ups, and hope to come along to one of these in the next couple of months.  It has been a challenging time for many over the past few years, and support from us all is valued and much needed.
 
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
 
 
Worcester Afternoon Café Meetings
 
Our next Afternoon Café Meeting will be from 2.00 - 3.30 pm, on Wednesday 12 April, 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.)  
 
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
•  Action for ME  •  Coronavirus (COVID 19)  •  Hereford 
•  Local News  •  Meetings  •  N.H.S.  •  N.I.C.E.  •  Post COVID Syndrome (Long COVID)   •  Worcestershire  •  Worcestershire M.E. Social Group  

Worcestershire ME/CFS Local Services

13/10/2022

 
Marina Townend, Specialist Occupational Therapist/Team Lead, of the ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, informed us -
 “Things have changed significantly over the past couple of years.  The way we operate as a service has changed due to the pandemic, the incidence of post-covid syndrome and the updated NICE guidelines.”
 
Marina is grateful for the NHS Worcestershire ME/CFS Specialist Services  information on the Worcestershire ME Social Group website, and tells us that they are going through the same process themselves but have not been able to make the necessary changes yet.  The Herefordshire and Worcestershire Health and Care NHS Trust website (including the ME/CFS service section) is developed and maintained by the Herefordshire and Worcestershire Health and Care NHS Trust Communications Team so any changes have to go through them.
She added -
“This is helpful from a technical point of view but does slow the process down.  We understand the local ME/CFS and Post Covid Syndrome Services is about to enter into an audit to check that our service is operating in line with the NICE guidelines, and the website will be updated as part of this.”  
 
Marina continued -
“In the midst of the day-to-day busyness, the audit will be a welcome opportunity to take stock and help to direct any changes or improvements that we need to make.  As ever, we are committed to providing a high-quality service to people with ME/CFS across Herefordshire and Worcestershire.  There has been a huge amount of work and, to be very honest, it has felt overwhelming at times.  It is the reason why I haven't kept in touch with you and the wider ME social group, for which I apologise.
From your website, it doesn't look like you are meeting as a social group at the moment but when you start again, I would like to come and update people on some of the changes, catch up with familiar faces, etc.  I will write a summary for your website as soon as I can but please forgive me if that is delayed - as you can see, we have work to do to get our own website up to date first!”
 
Contact information for the Worcestershire ME/CFS and Post-Covid Syndrome Services, through Malvern Community Hospital. (01684 612671, [email protected] and their webpage NHS Worcestershire ME/CFS Specialist Services.

We await further news from Marina Townend and her team.

•  N.H.S. •  Post COVID Syndrome (Long COVID)  •  Worcestershire

ME Awareness Week 2022:  9 - 15 May

9/5/2022

 
 See ME Awareness Week news items on M.E./Fibromyalgia Charities websites  - see 'M.E. /C.F.S. Organisations', and 'UK Research Organisations' websites links and become involved where you can.
 
International May 12th Awareness Day
This year, 2022, marks the 30th anniversary of International May 12th Awareness Day. The idea originated with Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (no longer active). Tom Hennessy was based in the USA but understood that it needed to be an international event; he designated the 12th of May 1992 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
 
May 12 was chosen as it coincided with the birth date of Florence Nightingale, the celebrated English social reformer and statistician, and the founder of modern nursing. Nightingale became chronically ill in her mid-thirties after returning from the Crimean War; the M.E.-like illness often left her bedridden during the last 50 years of her life. You will find a more detailed account in A Short History of Myalgic Encephalomyelitis.

The ME Association ask you to -
Make a wish and join in ME Awareness Week 2022
May 8, 2022
ME Awareness Week starts tomorrow, Monday 9th May, and continues through to a fantastic finale on Sunday, 15th May. During the week, we will be asking you to make frequent use of the hashtag #JustOneWish.
It's the thirtieth anniversary of the event and – with Long Covid rampant round the world – the number of people being diagnosed with ME/CFS is growing exponentially day-by-day.
There are said to be 1.7m people in the UK alone who, months after being infected, still have symptoms of Long Covid - which in so many respects looks just like ME/CFS.
Please do something to help the ME Association meet the challenge of supporting these ever-growing numbers now and in the years ahead.
It's not too late to organise your own fundraiser to support us during ME Awareness Week. Download this little leaflet (pdf) which has lots of ideas for easy-to-arrange fundraising events.
 
Use the hashtag #JustOneWish whenever you can during the week.
The wish is what we have all been crying out for over the years - safe and effective treatments that make people with ME/CFS better.
With our links into the research community, the ME Association is well placed to generate funds that leverage new and promising biomedical research.
In the run-up to the week, we shall be highlighting lots of exciting fundraising going on all round the UK and putting up reminders about the big job of raising awareness of ME/CFS that still remains to be done.
This is your week. It's also the best time of the year to show that you are proud of your achievements and tell the world you're not yet prepared to be forgotten. Please make use of it.
Tony Britton, Fundraising and PR Manager
[email protected] Mob: 07946 760 811

Last week, Action for ME launched their new five-year strategy, Shaping our future together. -
Shaping our future together: our call for a national strategy for M.E.
May 05, 2022
As we approach the World ME Day on 12 May, we launch Action for M.E.’s new five-year strategy, Shaping our future together. We also have a simple-text version.  Developed in partnership with people with M.E. of all ages, carers and professionals, it sets out four ambitious outcomes which we believe will help us end the decades of ignorance, injustice and neglect faced by people with M.E.
 
Sonya Chowdhury, CEO, Action for M.E. says:
We are calling for a national strategy for M.E. led by the UK Government with a clear implementation plan and significant investment.  Action for M.E. alongside many from the M.E. community work hard behind the scenes to advocate for people with M.E. at all levels, and we hope that we will soon see a long overdue commitment to end the ignorance, injustice and neglect experienced by children and adults with M.E.  We will not stop until this happens.

Sunday 15 May
ME Research UK (MERUK)
are publicising -
Blue Sunday- The Tea Party for M.E.
22 April 2022
Anna Redshaw’s ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held on Sunday 15th May 2022.
As Anna explains
On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes.
We are so often excluded from events because our symptoms can make it so difficult for us to leave the house, let alone spend an hour or two at an event. That’s why the Tea Party For M.E. has always had an online/virtual element running alongside any in-person tea parties.
 
The premise is simple.
  • Wear something blue (pyjamas count!)
  • Dig out your best cups and saucers
  • Bake or buy your favourite cake
  • Post a photo of you little tea party set-up to social media
  • Invite your family and friends to enjoy tea and cake with you, in person or via video call
  • Donate the price you’d pay in a café
  • Connect with others online who are doing the same, by commenting on their photos and posts
  • Feel a part of the in-person tea party as Anna uploads photos and videos from the event she host every ‘Blue Sunday’.
You can share your photos in the Blue Sunday 2022 Facebook Event or on Twitter and/or Instagram using the hashtags #TeaPartyForME2022 #BlueSunday2022
You can donate to ME Research UK directly via JustGiving.

Our local ME/CFS Service
Last month, we publicised the ME Association’s (MEA) request for news https://worcsmegroup.weebly.com/blog/me-awareness-week-2022-9-15-may about your local M/CFS Specialist Service and/or Long Covid Clinic.
Since then, we announced that the ME/CFS Service at Worcestershire Acute Hospital had been decommissioned.
 
How has this affected you?  Is there anything you would like to share, either on this website, or with the MEA?  Just get in touch 


•  Action for ME  •  Coronavirus (COVID 19)  •  Fundraising 
•  Local News  •  M.E. Association  •  MERUK  •  N.H.S.  Post COVID Syndrome (Long COVID)  •  Research  •  Worcestershire  •  Worcestershire M.E. Social Group
<<Previous

    Group Blog

    • News
    • AfME/ MEA/ Government news
    • Benefits News

    Categories

    All
    25% M.E. Group
    Action For ME
    A.P.P.G
    B.B.C
    Benefits
    Carers
    Children
    Coronavirus (COVID 19)
    DecodeME
    Fibromyalgia
    Forward ME
    Fundraising
    Government U.K.
    Hereford
    Local News
    Malvern
    #MEAction
    M.E. Association
    Medical Research Council
    Meetings
    MERUK
    MP
    National Newspapers
    N.H.S.
    N.I.C.E.
    Parliament U.K.
    Post COVID Syndrome (Long COVID)
    Research
    Sleep
    The ME Trust
    Tymes Trust
    Worcester City Council
    Worcestershire
    Worcestershire County Council
    Worcestershire M.E. Social Group
    Worcestershire M.E. Support Group



    Archives

    July 2025
    June 2025
    May 2025
    April 2025
    March 2025
    February 2025
    January 2025
    December 2024
    November 2024
    October 2024
    September 2024
    August 2024
    July 2024
    June 2024
    May 2024
    April 2024
    March 2024
    February 2024
    January 2024
    December 2023
    November 2023
    October 2023
    September 2023
    August 2023
    July 2023
    May 2023
    April 2023
    March 2023
    January 2023
    November 2022
    October 2022
    July 2022
    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    January 2022
    December 2021
    November 2021
    October 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    June 2019
    April 2019
    February 2019
    January 2019
    December 2018
    November 2018
    September 2018
    August 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    May 2017
    April 2017
    February 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    May 2015
    April 2015
    March 2015
    January 2015
    January 2013
    December 2012
    November 2012
    January 2008
    December 2007
    June 2004

    RSS Feed

Powered by Create your own unique website with customizable templates.