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

 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  

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, WHCNHS.chronicfatigue@nhs.net 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

 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
tony.britton@meassociation.org.uk 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 Feedback@meassociation.org.uk 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
tony.britton@meassociation.org.uk 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) 

Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management.   NICE guideline [NG206] Published: 29 October 2021.
 
Extract from letter received from Robin Walker MP for Worcester: -
“I join the APPG in welcoming the news that the final guidelines have now been published.”
 
The MEA reported - All-Party Parliamentary Group on ME sent letter to NICE November 11, 2021
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG) have sent a letter to NICE following the publication of the new ME/CFS Guideline. The letter is shown below:
Dear Professor Leng.
Re: The publication of the new NICE Guideline on Myalgic Encephalomyelitis (ME)
We are writing as members of the All-Party Parliamentary Group (APPG) on ME to welcome the new and long-awaited NICE ME guideline.
The new guideline significantly improves upon the previous version published in 2007 as it is based on strong evidence demonstrating that ME is a complex and debilitating physiological disease.  We endorse the removal of support for graded exercise therapy (GET) as a treatment for ME within the guideline. This step is widely supported by both scientific research and ME patients who have been steadfast in calling out the harmful effects of GET.  With the publication of the updated guideline, the APPG looks forward to seeing the implementation of its recommendations, including the removal of GET from any treatment programmes.  While biomedical treatments are being developed, people with ME must be able to benefit from proven symptom management techniques.
We understand that there is a significant knowledge gap amongst medical professionals in relation to the cause and appropriate treatment of ME.  The decision made in August to delay publication due to the unwillingness of some professional groups to endorse the new guideline demonstrates this gap. Although we are pleased that the new guideline has finally be published and the good work of the guideline committee upheld, evidently, there is a great need for updated training for healthcare professionals caring for people with ME in addition to a review of current service provision.  As an APPG, we look forward to seeing progress being made in this area.  We wish to reiterate the APPG's support for the work of NICE which has achieved major guideline improvements and broad consensus.  The new and updated guideline better reflects the lived realities of ME patients, and we believe that this guideline has the potential to be life-changing for people with ME throughout the UK. For that reason, we look forward to seeing its full implementation alongside the development of a more patient-centred approach to ME care.
Kind regards, 
Carol Monaghan MP,  Andrew Gwynne MP,  Cat Smith MP, Stephen Timms MP, 
Debbie Abrahams MP,  Alison Thewliss MP,  Margaret Ferrier MP,  Edward Davey MP, 
Ben Lake MP,  Dame Diana Johnson MP,  Emma Lewell-Buck MP,  Angus MacNeil MP.
Cc: Dr Paul Chrisp, Dr Peter Barry, Baroness Finlay of Llandaff
 
 
Physios for M.E.’s Reaction -
NICE Publish new Guidelines
The National Institute for Health and Care Excellence (NICE) have now published their final update of their guidance “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management”.  During the stakeholder consultation process, Physios for ME provided our own detailed commentary on the draft guidelines at the end of 2020. We are pleased to see that the significant changes – removing recommendations for graded exercise therapy - have remained in the finalised guidelines, and further amendments have been made to clarify some areas following the draft consultation.
 
The over-riding message for physiotherapists is:   “Do not offer people with ME/CFS physical activity or exercise programmes that use fixed incremental increases, based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.”
This description defines graded exercise therapy (“GET”) but is not exclusive to this terminology, so it is important to understand that any treatment approach that uses fixed increments and is based on a deconditioning theory should not be used, regardless of what it may be called.   The guidelines are in line with our own recommendations and reflects the known adverse physiological effects of exertion.
While we are on the whole pleased with the new guidelines, we do have some comments and concerns:
 
1. Specialist services have historically based practice on the old NICE Guidelines, providing GET and CBT.  The new guidelines represent a significant shift in clinical practice and we therefore wonder;
Who will provide training to support teams to adapt their practice?
How will these changes be overseen and monitored?
 
2. The new guidelines state: “If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team”.
We find this to be too restrictive.  People with ME may see a physiotherapist outside of a specialist ME service for other problems, such as musculoskeletal, pain or rheumatology conditions.
Under these guidelines, how should an MSK practitioner manage a shoulder injury in a person with ME?  Or an orthopaedic physiotherapist provide rehabilitation to a person with ME who has just had a hip replacement?
We feel that education for all physiotherapists needs to be improved regarding ME, in particular the ability to identify and manage post exertional malaise, so that all physiotherapy interventions can be adapted and made suitable for a person with ME.

• We think all undergraduate physiotherapy programmes should include ME as standard.
• We feel that training updates based on the most recent biomedical evidence base should be made available for all physiotherapists regardless of speciality.
• We would emphasis the requirements for continuing professional development (CPD) as part of the registration with the Health & Care Professions Council, and that CPD is the responsibility of each individual practitioner

 
Physios for ME will be centring much of our work on addressing the points above, as well as continuing to explore research into how our profession can offer people with ME even more support that can improve quality of life.  We would like to thank the team at NICE for publishing the guidelines, and all of the stakeholders and supporters for their tireless work. We also extend our respect to the ME patient community who provided their expertise to the consultation process despite the potential consequences for their own symptoms.
 
 
Doctors with M.E.’s Reaction -
NICE 2021: A Triumph of Science over Discrimination
Doctors with M.E. stands ready to work with partners and organisations to bring medical education up-to-date and assist in developing the right services for ME/CFS patients.
We are delighted that the new NICE guideline on ME/CFS has been published. Doctors with M.E. considers the launch of this guideline to be a watershed moment in the history of ME/CFS medical care in the UK, with implications that extend to those Long Covid (PASC) patients who also meet ME/CFS diagnostic criteria. The new guideline discards discredited psychological theories and therapies in favour of a more patient centred approach, driven by improved scientific understanding. It represents a positive and total paradigm change, uniting around the science, official disease classification and medico-legal compliance implications.
 
This translation of scientific knowledge into clinical practice is an opportunity for doctors and patients to come together to develop more concordant and productive relationships, whereby GPs and specialists are supported in offering early diagnosis, relevant investigations, symptom treatment and compassionate care.  Misdiagnosis and delays should cease to occur. Harmful Graded Exercise Therapy is discontinued and must not be replaced with renamed or rebranded versions, which would be clinically, scientifically and legally unsustainable. Accounting for systemic exertion intolerance and post exertional symptom exacerbation is at the heart of the science and the new guideline. Work must now begin to:

• Remove outdated and erroneous educational material or policies which contain discredited theories and harmful recommendations
• Develop curriculums and educational material which reflect scientific knowledge
• Training and education to bring clinicians and practitioners up-to-date
• Restructure, commission and/or redesign health care services to properly meet the needs of ME/CFS patients
• Provide adequate social care
• Provide appropriate accommodations at work and in educational settings

 
We extend our thanks to NICE and to the ME/CFS Guideline Development Committee.  Doctors with M.E. stand ready to work with partners and organisations to make all this a reality.  There is a long way to go and significant funding, resources and culture change will be needed but at long last, the right care and support for people living with ME/CFS is on the horizon.
 
 
Chartered Society of Physiotherapy’s Reaction -
NICE publishes new guidance about ME/chronic fatigue syndrome
The National Institute for Health and Care Excellence (NICE) has now published its new guidance on the diagnosis and management of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).  The publication of the new guidelines follows a delay to the guidance earlier this year. At the time the Institute explained that this was due to the complexities surrounding the condition, meaning they had been unable to gain comprehensive agreement and support for their updated recommendations. This has now been resolved. 
 
Commenting on the publication of the new guidelines, Natalie Beswetherick, director of practice and development at the Chartered Society of Physiotherapy, said:
‘It is very welcome that a consensus has been reached and the guidance can now be published after what has been an understandably fraught process.
‘It is vitally important that people living with ME receive personalised care that is built around their needs, especially where physical activity is concerned.
‘We were clear during the consultation phase and recent additional discussions that approaches that use fixed incremental increases in activity levels do not meet that criteria and should not be used.
‘The guidelines reflect this and I expect all those physiotherapists working with people who have ME/CFS to read the document, reflect on what this means for their practice and make any changes to their practice in light of the revised guidelines. 
‘Above all, these guidelines provide a platform for consistency for all those healthcare practitioners working with this population, to ensure people living with ME/CFS get the holistic, person-centred support they need.’
 
 
Pulse’s Reaction
Final ME/CFS NICE guideline recommends ‘personalised care and support plan’
NICE’s final guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) has recommended that patients receive a ‘personalised care and support plan’.
Today’s publication of the final guideline comes as NICE halted the publication of the long-anticipated update in August because of ‘strong views’ around management of the condition.
 
After a ‘successful’ roundtable discussion to address concerns that had been raised by some professional bodies, NICE said it was now confident that the guidelines, which cover children, young people and adults could be effectively implemented across the system.
ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms, the NICE guidelines stress.
It outlines the condition as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties described as ‘brain fog’.
People with all four symptoms that have lasted three months or more should be referred to a specialist team and a range of management approaches should be offered depending on an individuals’ preferences and priorities, the guidelines state.
But any programme based on fixed incremental increases in physical activity or exercise such as GET, should not be used, NICE said. No therapy based on exercise or physical activity should be given as a ‘cure’.  Personalised exercise programmes can be offered in people with ME/CFS who want the option but it should be overseen by a specialist physiotherapist and reviewed regularly.
 
 
Nursing Times’ Reaction
Updated ME/CFS guidance finally published following controversy
Graded exercise therapy (GET) should not be used to treat patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CSF) because it can worsen the condition, according to updated guidance from the National Institute for Health and Care Excellence (NICE).  The NICE guidance published today also states that cognitive behavioural therapy (CBT) should not be considered a cure for ME/CFS, although it may sometimes be beneficial in managing mental health consequences of living with the condition, as with any chronic illness.
Instead of being encouraged to push themselves to be more active, patients with ME/CSF should receive individually tailored support from a multidisciplinary team to help them manage their symptoms, and stay within their energy limit, the guidance recommends.  This recommendation reflects a shift towards considering ME/CFS as a complex, multi-system disorder instead of as a psychosomatic condition that can be treated or cured with psychological and/or behavioural interventions.
The NICE guideline includes clarifications to the diagnostic criteria that should be used to identify ME/CFS. It is characterised by four key symptoms: debilitating fatigue that gets worse following activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties known as “brain fog”.  Anyone with all four of these symptoms lasting three months or more should be assessed by a ME/CFS specialist team.
 
Caroline Kingdon, research nurse and UK ME/CFS biobank lead at the London School of Hygiene & Tropical Medicine, who was on the NICE committee working on the revised guideline, said: “This severe, complex multisystem disease has long been misjudged by the healthcare profession. Educating nurses about the needs of people with ME/CFS will help drive the step change in understanding and belief, compassion and empathy required to care for all patients with ME/CFS.  “During my many years as a nurse, I have rarely encountered individuals who are as ill as people with the most severe ME/CFS. Even when people with mild disease consider themselves fully recovered, they have often simply adjusted their lives to manage its effects.”
 
 
Our recent group blog announcing the new NICE Guideline, included statements from -
NICE, (National Institute for Health and Care Excellence);  the MEA (the ME Association);  AfME (Action for ME);  MERUK (ME Research UK);  BACME (British Association of CFS/ME); and FORWARD-ME.

•  A.P.P.G  •  M.E. Association  •  MP  •  N.I.C.E.  •  Post COVID Syndrome (Long COVID) 

•  Post COVID Syndrome (Long COVID) Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management.
NICE guideline [NG206] Published: 29 October 2021.
 
This guideline covers Diagnosing and Managing Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS) in children, young people and adults.  It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier.  It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms. 
These recommendations were developed based on evidence reviewed before the COVID-19 pandemic.  We have not reviewed evidence on the effects of COVID-19, so it should not be assumed that these recommendations apply to people diagnosed with post-COVID-19 syndrome.  NICE has produced a guideline on managing the long-term effects of COVID-19.
 
Recommendations.  This guideline includes recommendations on:

• suspecting ME/CFS and diagnosis
• information and support, including advice when ME/CFS is suspected
• assessment and care and support planning
• safeguarding
• access to care and support
• managing ME/CFS
• symptom management
• flare-ups and relapse
• care for people with severe or very severe ME/CFS

 
Also from the National Institute for Health and Care Excellence -
NICE ME/CFS guideline outlines steps for better diagnosis and management
NICE has today (29 October 2021) published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
28 October 2021
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
NICE continued by giving statements from -
Paul Chrisp, director of the Centre for Guidelines at NICE, Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, and Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, and vice-chair of the guideline committee.
 
The ME Association’s (MEA) announcement -
The new NICE guideline on ME/CFS is published!
October 29, 2021
NICE have now published the final version of the new guideline.
READ NICE GUIDELINE
Dr Charles Shepherd, who was a member of the committee that prepared the new guideline, comments:
People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose - because it recommended treatments that were either ineffective or harmful.
After a very thorough review of all the evidence - from clinical trials, experts and patients - we now have a new guideline that has reversed these recommendations and should be widely welcomed by people with ME
In particular the new guideline…..

• Recognises that ME is serious and complex medical disease
• Emphasises the need for early and accurate diagnosis – preferably within 3 months of the onset of symptoms, which normally follow an acute viral infection, and where there are important overlaps with Long Covid.
• Provides sensible guidance on activity and energy management in order to avoid symptom exacerbation and no longer recommends GET.
• Recognises the special problems faced by children and those with severe ME.

The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help.  We will be issuing more detailed reaction in due course
Charles Shepherd,  Hon Medical Adviser MEA
 
Action for ME’s (AfME) Announcement -
NICE publish guideline 
October 29, 2021
Action for M.E. is delighted, as are the other members of Forward-ME, to see the long-awaited guideline on diagnosing and treating M.E be published by NICE. The publication follows a roundtable meeting held last week where Action for M.E. and other members of Forward-ME discussed the key issues.
Doctors, and people with ME* welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management, and support for people with ME.
 
The new guideline sets out a significant change in approach:

• Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
• Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long-term condition, but recognises that CBT cannot cure ME.
• Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.

The recommendations on ‘Energy Management’ will also help people with Long-Covid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety
This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm.
The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented.
“The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that future children and adults with ME will not repeat the anguish of the past.” (Sonya Chowdhury, CEO, Action for ME)
“The Guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor: Action for ME)
We have compared the 2007 versus the 2021 to share the differences and key points of the new guideline. You can read this comparison here.
NOTES:

• ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome’, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
• People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hyper-sensitivity to light and sound. Some require tube-feeding.
• There is currently no cure for ME, but effective management can reduce symptoms.
• ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
• Forward-ME represents national ME charities, co-ordinating activity to support people with ME.

 
ME Research UK’s (MERUK) Announcement -
Our response to the updated NICE guideline 
29 October 2021

• Download the new guideline here
• Read NICE’s official press release here
• Read Forward-ME’s response here

 
Today’s publication by NICE of its updated ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ clinical guideline marks a significant step in both the acceptance of ME as a physical illness and the recognition of appropriate treatment needs of those affected by the condition.
We broadly welcome this significant update and improvement to the previous 14-year-old document, but it marks only the beginning of the transformation needed for ME to be more fully understood and, ultimately, for a cure to be found.
 
NICE’s recommendations highlight the need for research into diagnostic criteria and tests, as well as health-outcome measures, but these will not be fulfilled without researchers, healthcare professionals and funders working together to understand the causes of the illness and the effects it has on bodily systems.
Research from numerous studies informed the changes to the guideline, but it is clear that further progress depends on increased research and the availability of funding to make this work a reality. This is where ME Research UK stands ready.
Having invested over £2 million in worldwide research to date, with 10 ongoing studies, 2 newly funded projects starting this month and PhD funding available, we have funded more high-quality biomedical research into ME than any other charitable body outside the USA.
To date, the research we have funded has centred around the autonomic nervous system, the immune system, the circulatory system, the brain, genetics and mitochondrial dysfunction – all vital areas of research about the causes of ME. However, these results need to be built upon by those currently working in ME and those in other fields so that more vital breakthroughs can be made.
 
BACME’s announcement -
The new NICE Guideline on ME/CFS was published on 29th October 2021
This is BACME's response to the publication:
BACME welcomes the new NICE Guidance on ME/CFS in the hope that this will support continued progress in improving the quality of life of all people who have the complex illness ME/CFS.  Clinicians working in NHS specialist ME/CFS services strive to provide high quality care and support to people with ME/CFS while recognising that there is still a long way to go with our understanding of the condition and we do not yet have a robust evidence base on which to guide treatments and therapy approaches.
 
The new NICE guideline provides information regarding diagnosis including the importance of recognising the key symptom of Post-Exertional Malaise.  The guideline has also clarified the use of the term Graded Exercise Therapy (GET) and,in a change from the previous guideline, it has now restricted use of the term GET todescribe therapy programmes based on treating deconditioning. The symptoms of ME/CFS are not caused by deconditioning.
This guideline marks the move away from using GET programmes for treating ME/CFS.
This is a move the majority of BACME members working in NHS specialist services have already made.  BACME welcomes the fact the new NICE guideline specifies that clinicians from all disciplines delivering care to people with ME/CFS should have specialist knowledge of the condition.
BACME continues to support research which aims to provide further understanding of the underlying pathological processes that generate the symptoms experienced by people with ME/CFS in the hope this will also lead to more refined therapeutic approaches.
BACME recognises the importance of providing confident support to people with ME/CFS now and would like to see increased investment in specialist service provision to ensure equitable access for all people with ME/CFS.
BACME will use the new NICE guideline as a foundation on which to build further clinical guidance on the delivery of care to people with ME/CFS and work to ensure that the patient story is heard and embedded in the future of ME/CFS care.
 
Forward-ME Announcement -
New NICE Guidelines on ME: Forward-ME Statement & Media Support
Oct 29th 2021
NICE Publishes new Guideline on ME/CFS*, driving major improvements in care
Press Statement from Forward-ME, embargoed until publication of NICE guidelines.
Doctors, and people with ME* welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management and support for people with ME.
 
The new guideline on ME/CFS sets out a significant change in approach:

• Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
• Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long term condition, but recognises that CBT cannot cure ME.
• Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.

The recommendations on ‘Energy Management’ will also help people with LongCovid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety.
This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm.
The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented.
 
COMMENT:  “The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that in the future, children and adults with ME will receive an improved standard of care and support.” (Sonya Chowdhury, CEO, Action for ME)
“We hope and believe the Guideline will provide much needed stimulus for substantial, publicly funded biomedical research into the causes, consequences and treatment of this disease.” (Jonathan Davies, ME Research UK)
“This is a very special day for people with ME – publication of a new evidence-based NICE guideline which confirms that this is a serious and very debilitating medical disease. I welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.” (Dr Charles Shepherd, Medical Advisor, ME-Association)
“The Guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor: Action for ME)
*NOTES:

• ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome’, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
• People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hyper-sensitivity to light and sound. Some require tube-feeding.
• There is currently no cure for ME, but effective management can reduce symptoms.
• ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
• Forward-ME represents national ME charities, co-ordinating activity to support people with ME.

 
Two further MERUK articles today
 
Updated NICE guideline: recommendations for research 
29 October 2021 (ME Research UK)
While the updated NICE guideline on ME/CFS is focused on the diagnosis and management of the illness, it acknowledges that there is still much to learn about it, and therefore makes some useful recommendations for research.
 
Top 10 takeaways from the updated NICE guideline
29 October 2021 (ME Research UK)
Today’s publication of the updated NICE guideline on ME/CFS marks a significant step in the acceptance of ME as a physical illness and the recognition of appropriate treatments for people affected by the condition. There are marked changes from the previous version in how people are to be diagnosed and what treatments can be offered. Here are our top ten takeaways from the new guideline.
 
 
Today’s Press:
 
BBC News: Chronic fatigue guidelines scrap ME exercise therapy advice
 
The Guardian | ME / Chronic fatigue syndrome:  ME exercise therapy guidance scrapped by Health watchdog Nice
 
INEWS:  Chronic fatigue syndrome: controversial exercise therapy removed from new treatment guidelines
 
Daily Mail:  Doctors are told NOT to prescribe exercise to patients with ME  - even though critics say it's the only therapy known to help.


•  Action for ME  •  B.B.C.  •  Forward ME  •  #MEAction  
•  M.E. Association  •  MERUK  •  National Newspapers  •  N.I.C.E.  •  Post COVID Syndrome (Long COVID) •  Research