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 

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

Updated downloadable information from the ME Association (MEA).
 
The ME Association: 2024 Autumn Covid Booster Information
October 21, 2024
 
Even though Covid-19 hasn't gone away, many people have been returning to normal or near normal life.  However, while official statistics indicate that levels of Covid infection are still fairly low this reflects the fact that very little testing is being carried out.  There are new variants of the virus still appearing, hospital admissions remain a cause for concern, and other indicators of Covid in the community confirm that Covid is still causing problems.
 
So, as we have been regularly pointing out on ME Association social media, people still need to take sensible precautions to reduce the risk of catching Covid and should seriously consider having a Covid Autumn booster.
NHS UK website information on all aspects of the autumn Covid booster - including how to book an appointment, different vaccines, common side effects.
 
The MEA continued by giving a link to the NHS Covid-19 vaccine website, plus a detailed letter from -
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS.
 
You can download PDF files of these items.

• Template: Covid Autumn Booster Vaccine (2024)
  
• Template: Flu Vaccine (2024-25)
• Flu Vaccination and ME/CFS (2024-2025)

 
 
 
Updated Booklet: Flu Vaccination & ME/CFS 2024/25
October 11, 2024


Flu vaccination is important because, although flu is often unpleasant, it can be dangerous. This is especially so for anyone with certain chronic health conditions, including ME/CFS. And with Covid still around, a combination of flu and Covid could be even more serious.
As there is no simple yes/no answer as to whether people with ME/CFS should have a flu vaccine, the purpose of this information is to supply you with everything you need to know about flu vaccines and ME/CFS. You and your doctor can then decide whether you ought to have this protection.
 
 
 
The ME Association (MEA) publicised the Guardian’s article at the end of October.
The cost of restricting COVID boosters in the UK could be huge 
October 31, 2024
Britain has closed its eyes to long Covid - which means it will ravage even more lives and livelihoods
Devi Sridhar -The Guardian
 
Extracts
The trauma of those pandemic years is burnt into our minds. But, whether we want to deal with it or not, Covid-19 is still affecting all of us, and circulating at fairly high levels in Britain this month. While community surveys are no longer conducted by the Office for National Statistics to estimate overall cases, hospital data from England indicates that the weekly hospital admission rate for Covid-19 is at 4.64 for every 100,000 people, with the north-east region at 8.91.
 
The longer legacy concerns people who had and cleared the infection, but are still suffering - what is usually referred to as Long Covid.
Recent concerns about economic inactivity are tied to the growing percentage of those unable to function due to Long Covid. A study in the Lancet in August 2021 estimated that 22% of people with long Covid were unable to work, and 45% were on reduced hours.
 
A recent study in the New England Journal of Medicine found that vaccination strongly reduces the chance of serious problems of Long Covid. The study found that the incidence of experiencing symptoms one year after infection decreased during the pandemic from 10.42 cases for every 100 people for unvaccinated individuals in the pre-Delta period, to 3.5 cases a 100 people for vaccinated individuals in the Omicron period. They estimate that roughly 72% of the reduction in Long Covid was due to the vaccines, while 28% was linked to changing variants. 
 
But very few groups in the UK are eligible for a 2024 autumn booster: adults 65 and older; residents in care homes; frontline NHS and social care workers; as well as those in high-risk groups.
The general population can get the Covid-19 vaccine, but it’s pricey, at nearly £100 a dose at Boots, for example. Compare this with the private cost of a flu jab at just under £22.
Looking at other countries’ policies, the UK is the outlier in continuing to restrict free boosters to certain groups. Constrained NHS budget means decisions have to be made on a cost-benefit basis, but avoiding the population-level effects of illness would not only benefit the individual but also the NHS and wider economy.
Read Full Article on The Guardian

•  Coronavirus (COVID 19)  •  M.E. Association  •  National Newspapers  •  N.H.S.  •  N.I.C.E.

Eligibility for the Spring 2024 Covid vaccine booster.
Are people with ME/CFS eligible for a Covid booster vaccine?
The ME Association (MEA) are giving explanations to queries they’ve received.
April 18, 2024
We are starting to receive queries about whether people with ME/CFS are going to be eligible for the Spring Covid vaccine booster - if you decide that you would like to have one.  The eligibility criteria have changed and become more restrictive - so they now only cover two basic groups:
 

• First: everyone over the age of 75 who wants a booster,
  
• Second: people who have immune system suppression - in other words a seriously weakened immune system.
  

While a wide range of immune system abnormalities have been identified in ME/CFS, these are not sufficiently consistent or robust enough to classify ME/CFS as an immununosuppressed medical condition - although there may be individual cases where this definition might be appropriate.
In fact, some of the research evidence in ME/CFS points towards low level immune system activation (in other words an over-active immune system) rather than immunosuppression.
 
ME/CFS is not therefore on the list of named immuno suppressed conditions in the guidance that has just been published by the UK Health Security Agency (UKHSA). The full list of immunosuppressed conditions can be found in tables 3 and 4 in Chapter 14a of the NHS Green Book. 
Consequently, unless you are over the age of 75, it's unlikely that you are going to be offered a Spring Covid booster on the basis of having ME/CFS.
 
Please note that the ME Association is here to provide balanced and accurate information on Covid vaccines – which is what we have been doing since Covid vaccines became available.
We are well aware that some people have suffered an adverse reaction to one of the Covid vaccines and will not want to have another vaccination. On a personal basis, I had a serious reaction to a booster that resulted in vasculitis (blood vessel inflammation).
I am going to carry out some further investigation into eligibility for the Spring booster and will then produce a further summary of the situation.
 
Further Information

• How to book an NHS appointment if you are eligible and want to have the booster.
  
• NHS Green Book – Chapter 14a.
• UKHSA Covid spring booster information | 16 April 2024.

 
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.

•  Coronavirus (COVID 19)  •  M.E. Association

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 

Covid Autumn Booster Vaccine 2023; & Flu Vaccine Information (2023-24).
See the Full Articles and Medical Disclaimers from the MEA and Dr Charles Shepherd.
 
The ME Association: Covid Autumn Booster Vaccine Information (2023)
September 6, 2023
 
Even though Covid-19 hasn't gone away, many people have been slowly returning to normal or near normal life.  At the moment the level of infection remains fairly low.  However, there are signs that we could be heading for another more significant wave of infection over the coming months.  There are also new variants of the virus appearing that are causing concern.
 
The MEA article includes information on the following topics.
Vaccine eligibility - ( the DHSC list of people who are automatically eligible):.
ME/CFS eligibility -  (This includes - “We have produced a Template letter that you can use when speaking with a GP if you aren’t called for a Booster vaccine automatically and decide to try and get one”).
Should I have a Covid Booster?
Feedback
 
Plus, message from Dr Charles Shepherd, Trustee and Hon. Medical Adviser, The ME Association -
On a personal basis I have had 4 Covid vaccinations without any problems. I had the Pfizer Autumn Booster last year which was followed by a fairly severe adverse reaction - a red swollen leg that was probably the result of a vasculitis.
“Having had 4 vaccinations without any problem I am probably going to go ahead and have an autumn booster but not with the Pfizer vaccine.  However, other Trustees and staff members with ME/CFS have had different experiences with the Covid vaccines and Boosters and may not make the same decision as me.
“It became quickly apparent from the large number of reported experiences that we received last year, and which we continue to receive, that people’s reactions or non-reactions are very mixed, and that no clear determination or recommendation can be made in regard to ME/CFS. Therefore, it is very much a personal decision.”
Dr Charles Shepherd.
 
 
The ME Association: Flu Vaccination Information (2023-24)
September 6, 2023
 
Each year, seasonal Flu affects hundreds of thousands of people across the globe. In most cases the virus causes mild illness that doesn’t require medical attention or hospitalisation. For certain people in high-risk groups, however, catching the Flu can lead to life-threatening complications.
 
The MEA article includes information on the following topics.

• Introduction.
• Catching the Flu.
• Protecting against the Flu.
  
• Cautionary Notes.
• Who can have the Free NHS Flu vaccine?
• Can I have the Free NHS Flu vaccine if I have ME/CFS?  (this includes  - “we have produced a Template letter that you can use when speaking with a GP if you have ME/CFS and decide to try and get a Free Flu vaccine on the NHS”).

• Possible vaccine side-effects.
• When to get the Flu vaccine.
• Where to get the Flu vaccine.
  
• Can I have the Free NHS Flu vaccine and Autumn Covid Booster together?
• Pneumonia and Shingles vaccinations.
• Feedback.
  

•  Coronavirus (COVID 19)  •  M.E. Association  •  N.H.S.

 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

 COVID-19 rapid guideline: managing the long-term effects of COVID-19.
NICE guideline [NG188] Published: 18 December 2020 Last updated: 11 November 2021
 
This guideline covers identifying, assessing and managing the long-term effects of COVID-19, often described as ‘long COVID’. It makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.
This guideline has been developed jointly by NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP).
On 11 November, we made new recommendations and updated existing recommendations on identification; planning care; multidisciplinary rehabilitation; follow up, monitoring and discharge; and service organisation. We also updated the list of common symptoms, emphasising that these may be different for children.
 
COVID-19 rapid guideline: managing the long-term effects of COVID-19
106 page booklet published by National Institute for Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and Royal College of General Practitioners (RCGP) in March 2022.

•  Coronavirus (COVID 19)  •  N.I.C.E.  • Post COVID Syndrome (Long COVID) 

The ME Association (MEA) are asking you to send recent information to be used for ME Awareness Week. 
The MEA announce -
ME Awareness Week 2022: What’s happening with your local ME/CFS Specialist Service and/or Long Covid Clinic?.
April 6, 2022
 
During ME Awareness Week (9th to 15th May), we'll be focusing on NHS secondary care services

• We want to highlight those ME/CFS specialist services that have gone out of their way to introduce new thinking into their everyday practices because of the 2021 NICE Clinical Guideline or who are actively pursuing improvements to existing services.  And, we’d like to encourage anyone working in a specialist service to connect with us, so we can better understand any issues they might be facing in trying to introduce the new recommendations.

• We've seen a tsunami of Long Covid in the past two years, with the numbers of people affected growing every day.  Long Covid Clinics have been set up in some parts of the UK but not in others, and some of these Clinics have merged with ME/CFS specialist services.  There is a very clear overlap between Long Covid and ME/CFS and not just with symptoms but also in the way that the conditions are best managed. We are also hearing that more people with Long Covid are getting a diagnosis of ME/CFS.  So, we'd also like to hear from anyone with Long Covid who has been or is being referred to a Long Covid Clinic.

 
Let us know if your GP has made a referral to secondary care, if secondary care services exist in your area, about the length of time you are having to wait to be seen by specialists, what your experience has been of the service you are using, and if there isn't a specialist service, then how you have managed without one. 
Keep it topical, not historical. We need to know what has happened to you in the last six months. Share your recent experiences of ME/CFS specialist services and Long Covid Clinics. Be as frank as you like and let us know if you need us to protect you by not revealing your identity.

• Have you visited your GP in the last six months to seek a diagnosis and/or referral for help learning to cope and best manage either ME/CFS or Long Covid?
• Have you attended an NHS ME/CFS Specialist Service or Long Covid Clinic?
• Was your GP or ME/CFS Specialist Service aware of the 2021 NICE Clinical Guideline for ME/CFS? Was your GP or Long Covid Clinic aware of the NICE Gudeline for Long Covid? Had they adopted the recommendations?
• Do you think new funding should be made available to better enable existing ME/CFS Specialist Services to adopt the 2021 NICE Guideline recommendations?
  • Should separate funding be allocated to establish new ME/CFS Specialist Services in counties that currently do not have them?
  • Do you want the recommendations from the 2021 NICE Guideline adopted in Scotland, Wales, and Northern Ireland, and for a network of specialist services to be established?
  • What difference do you think this might make?

Your personal stories, experiences, and insights are invaluable and we greatly appreciate you taking to time to share them with us.
 
Contact:
Please share your stories via email [email protected] with ‘Guideline Campaign‘ in the subject line. Don't forget to give us your full name and phone number. Even where we promise not to use them because you don't want to reveal your identity, we may need to get back to you to check certain points.  Alternatively, share your experiences and insights on social media and we'll collate them for use during ME Awareness Week.
We look forward to hearing from you! 
Tony Britton,  Fundraising and PR Manager
[email protected] Mob: 07946 760 811
 
Please contact the MEA direct.  Many thanks.

•  Coronavirus (COVID 19)  •  M.E. Association  •  N.H.S.  •  N.I.C.E. •  Post COVID Syndrome (Long COVID) 

The Worcestershire Association of Carers new Long Covid Carer Support webpage includes information from the MEA, and our local M.E. Social Group. See their ‘Long COVID Resources’ section amongst their topics.-

• Caring For Someone with Long COVID
• Long COVID Carers Survey
• What is Long COVID?
• Symptoms of Long COVID
• Diagnosing Long COVID
• Treatment, support and recovery
• What is the NHS programme Your COVID Recovery?
• Long COVID Resources

 
Long COVID & ME/CFS: Information & Management by Dr Charles Shepherd - Information and guidance from The ME Association on Post-COVID Fatigue, Post-COVID Syndromes, Long COVID and the overlaps with ME/CFS.
 
Worcestershire M.E. Social Group - ME/CFS & Post Coronavirus COVID-19. Post COVID-19 Fatigue; Post/Long COVID-19 Syndromes; Post-COVID ME/CFS. Explanations from ME charities plus recent news articles.
 
•  Coronavirus (COVID 19)  •  M.E. Association  •  Post COVID Syndrome (Long COVID)