(Including - Health and Social Care Secretary, and MP for Bromsgrove, Sajid Javid.)
 
NICE (National Institute for Health and Care Excellence)
NICE outlines steps needed to put ME/CFS guideline into practice
NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into …..
 
The British Medical Journal response to the NICE announcement
NICE sets out steps NHS must take to implement ME/CFS guidelines
The National Institute for Health and Care Excellence has issued an unprecedented implementation statement1 setting out the practical steps needed for its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) to be implemented by the NHS. 
Such statements are only issued when a guideline is expected to have a “substantial” impact on NHS resources, and this is thought to be the first. It outlines the additional infrastructure and training that will be needed in both secondary and primary care to ensure that the updated ME/CFS guideline, published in October 2021, can be implemented.  The statement is necessary because the 2021 guideline completely reversed the original 2007 guideline recommendations that people with mild or moderate ME/CFS be treated with cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Instead, the 2021 guideline says …
 
 
On M.E. Awareness Day, 12 May, Action for ME (AfME) announced:.
Transforming lives on World M.E. Day
May 12, 2022
Action for M.E. welcomes the Department of Health and Social Care’s pioneering statement on Myalgic Encephalomyelitis (M.E.) on the first ever World M.E. Day.
 
Ministers set out plans for a new cross-Government delivery plan on M.E. for England, aligning with other devolved nations of the UK. The statement, which was made to Parliament today by Health Minister Lord Kamall, is the first time that Government has made an explicit and dedicated statement on M.E.   It’s been backed by a pledge by Health Secretary Sajid Javid to “drive forward progress” and “improve experiences and outcomes for sufferers”.
 
The Government’s statement to parliament also welcomes the launch of the M.E./CFS Priority Setting Partnership (PSP) report Prioritise ME, which sets out the top ten M.E. research priorities identified entirely by people with M.E., carers and healthcare professionals. This initiative, led by Action for M.E. and facilitated by the James Lind Alliance completed a participatory process to identify the Top 10+ M.E./CFS research priorities to change the M.E./CFS research landscape in the UK and beyond.
Questions that Action for M.E. want addressed include whether there is a genetic element to the M.E., if a single test could be developed and whether existing drugs could be used to treat the condition.  The list of priority research areas, as well as downloadable and audio versions of the project report can be found at on the PSP website.
 
Health and Social Care Secretary Sajid Javid said:
“The UK is a world leader in research and Action for M.E.’s priorities lay out clear next steps in learning more about Myalgic Encephalomyelitis (M.E.). M.E. can be an incredibly disabling condition and not enough is known about it – we must drive forward progress in this area to ensure those living with the condition can be better treated and supported. I am committed to improving the lives of people affected - later this year we will develop a delivery plan to understand how we can improve experiences and outcomes for sufferers.”
 
Welcoming the Department of Health and Social Care’s statement and launching the ten priorities, Sonya Chowdhury, Chief Executive of Action for M.E. said:
“For too long people with M.E. have struggled to get their condition diagnosed, understood and acknowledged. On the the first World M.E. Day, it is fantastic to see that this devastating and disability condition is being explicitly acknowledged by Government as priority. This announcement complements the work undertaken through our Priority Setting Partnership, where people of all ages with M.E. have identified their Top 10 list of priorities that would have most impact on their lives to shape future research.  The report has been a powerful opportunity for the voices and lived experiences of children and adults with M.E. to be heard, and empower them to set the priorities for M.E. research themselves, and we look forward to working with Government on their action plan. Through greater partnership working we hope to able to better understand this debilitating disease, with the aim of finding effective treatments and ultimately a cure.”
 
 
Announcements from the ME Research UK (MERUK)
 
UK Parliament and ME/CFS 13 May 2022
Yesterday’s (12 May 2022) highly welcome statement from the Rt Hon Sajid Javid, Secretary of State for Health and Social Care in which he acknowledged
Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS.
is not the only parliamentary initiative on ME/CFS at Westminster. On 11th May, MP Carol Monaghan tabled an Early Day Motion for ME Awareness Week
 
Perth turns blue for International ME Awareness Day 2022 13 May 2022
Thanks to Perth and Kinross Council, various landmarks in Perth turned blue for International ME Awareness Day or purple to mark Fibromyalgia Awareness Day on 12th May 2022.
 
ME/CFS Priority Setting Partnership 13 May 2022
The results of the ME/CFS Priority Setting Partnership were announced yesterday (12th May 2022, International ME Awareness Day) as the culmination of a process to “enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research”.
 
Facilitated by The James Lind Alliance, the JLA method is designed to change the way research funding is granted, and to “raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them”.
These priorities came out of a process which gave a central voice to people with ME/CFS, and theirs are the voices that matter most. ME Research UK is encouraged that the outcome validates and strengthens our single-minded focus on funding relevant and rigorous biomedical research into the disease.
The results of the Priority Setting Partnership provide a useful backdrop as we continue our work and build on our unique position as a pre-eminent funder of ME/CFS research across the world.
 
Top 10 priorities
(We have added links to examples of research that ME Research UK has supported in these areas.)

1. What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?
2. Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?
3. How can an accurate and reliable diagnostic test be developed for ME/CFS?
4. Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?
5. Are there different types of ME/CFS linked to different causes and/or how severe it becomes? Do different types of ME/CFS need different treatments and/or have different chances of recovery?
6. Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?
7. What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?
8. Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?
9. What causes ME/CFS to become severe?
10. How are mitochondria, responsible for the body’s energy production, affected in ME/CFS? Could this understanding lead to new treatments?

10+. Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?
 
 
Many of the ME Association’s (MEA) announcements [see MEA website for full details]
 
Important Ministerial Statement on ME/CFS May 12, 2022
A statement has been made by Sajid Javid, the Secretary of State for Health and Social Care, which is copied here and can be read directly from the government site from the link below. [see MEA website].
 
NICE outlines steps needed to put ME/CFS guideline into practice
May 12, 2022
Implementation Statement from The National Institute for Health and Care Excellence
NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into practice.
 
Priority Setting Partnership
PSP for ME: Top ME/CFS research priorities identified May 12, 2022
The Top 10+ priorities for research around ME / CFS have been identified.
These priorities have been determined as a result of rigorous work engaging with thousands of people living with myalgic encephalomyelitis, their families and carers, and health professionals working to support these people.
The report is supported by The Rt Hon, Sajid Javid, MP, Secretary of State for Health and Social Care who states:
“I welcome the publication of this Priority Setting Partnership which sets out the Top 10+ research priorities for ME/CFS. The Government recognises that myalgic encephalomyelitis (ME) is an under-researched area and pledges to support research funders and the academic community to respond to this independent report.”
The Rt Hon, Sajid Javid, MP, Secretary of State for Health and Social Care
 
 
The Times: Sajid Javid promises radical action for patients debilitated by ME
May 13, 2022
Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.  The health secretary marked World ME Day yesterday by telling parliament he was “committed to better care and support for people living with ME and their families”.
Read the full article from The Times: Sajid Javid promises radical action for patients debilitated by ME | 13 May 2022
 
Times article: Relative’s suffering triggered Sajid Javid’s ME crusade
May 14, 2022
 
Times article: My daughter couldn’t be saved but there’s hope for other ME patients May 14, 2022
Tragic news from Sean O’Neill at The Times. The ME …
 
 
Science for ME included Sajid Javid’s statement, plus discussion
UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.

•  Action for ME  •  •  Government U.K.  •  M.E. Association  •  MERUK  •  MP  •  National Newspapers  •  N.I.C.E. •  Research  •  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.

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.

Please encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME (Myalgic Encephalomyelitis) meeting.
 
The ME Association announced -
Invite your MP to the Next Meeting of The APPG on M.E.
March 16, 2022
 
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 29 March 10:00 - 10:30.  We'd be really grateful if you could invite your MP to attend.  It will be a Zoom meeting and your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).
In addition to reconstituting the APPG, the AGM will include a discussion on our work plan for the next year in relation to the APPG purpose: to seek to improve health, social care, education, and employment opportunities for M.E. sufferers and encourage biomedical research into the cause and treatment of M.E. 
Action for M.E. and The ME Association have agreed to take on the secretariat responsibility for the APPG and will be working to ensure future minutes and announcements are published promptly.
 
See the ME Association, and Action for ME for suggestions how to approach your local MP.
 
 
A reminder -
NICE ME/CFS Guideline Online Talk - 24 March, 2.00 pm
23/2/2022
ONLINE TALK with Dr Charles Shepherd: Making the new NICE guideline work for people with ME.


•  Action for ME  •  A.P.P.G  •  M.E. Association 
•  MP  •  N.I.C.E.  •  Parliament U.K.

ONLINE TALK with Dr Charles Shepherd: Making the new NICE guideline work for people with ME.
NICE (National Institute for Health and Care Excellence
Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.   NICE guideline [NG206] Published: 29 October 2021.
 
Full information from the ME Association (MEA) website -
The Sheffield ME & Fibromyalgia group are hosting a talk with Dr Charles Shepherd on Thursday 24th March 2022, 2pm.  This event is free and open to all.  More can be read here on the Sheffield site and details are shown below.
 
About the event
This event is particularly aimed at healthcare professionals, but anyone with experience or interest in the subject is welcome to join. The new NICE guideline was published in October 2021 after years of campaigning from patients and advocates. It covers the diagnosis and management of ME/CFS, and contains important changes compared to the previous version. The event will consist of a 20 min presentation from Dr Shepherd followed by a Q&A session.  We will take questions from Zoom participants via the chat, and from comments on the Facebook live stream.
 
Dr Shepherd's presentation will include:

• Introduction to the new NICE guideline on ME/CFS, and how it was developed
• Key differences with the 2007 guideline
• How to diagnose ME/CFS
• How to best support patients: specialist referrals and different aspects of management
• Implementation of the guideline

 
The event will be hosted on Zoom, live streamed on our Facebook page, recorded and uploaded on our website and Youtube channel, where you can also find all our previous talks. A handout will be sent to all registrants, together with other relevant resources.
 
Last month, the MEA announced -
New CPD learning module from MIMS Learning on the new NICE guideline 
MIMS Learning, which produces high quality CPD (continuing professional development) resources for Healthcare Professionals in primary care has now published a one-hour learning module on the new NICE clinical guideline for ME/CFS.
 
 
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

•  M.E. Association  •  N.I.C.E.

Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management.   NICE guideline [NG206] Published: 29 October 2021.
 
The ME Association (MEA) are delighted to offer a free booklet that explains the new NICE clinical guideline and how it will affect the service that people with ME/CFS can expect from the NHS and social care in England, Wales, and Northern Ireland. Free Booklet: An ME Association Summary of the New NICE Guideline for ME/CFS
January 6, 2022
 
The MEA state - the 28 page downloadable booklet  features the main clinical recommendations from the guideline which we hope will be effectively implemented by healthcare providers as soon as possible.  It has been written by Dr Charles Shepherd, Hon Medical Adviser to the ME Association and Member of the NICE guideline committee (2019 - 2021).
 
The MEA’s Introduction
The National Institute for Health and Care Excellence (NICE) recently published a new clinical guideline about ME/CFS (NG206) for use by the NHS and social care services in England, Wales, and Northern Ireland. It is also recognised in Scotland.
The ME Association is delighted that the guideline has been published and we fully support the recommendations that it contains. It has also been supported by the British Association of CFS/ME (BACME) - the organisation for health professionals who work in ME/CFS specialist services - and widely welcomed by the patient community.
People with ME/CFS had to live with a previous guideline that was unfit for purpose - because it recommended treatments that were often inappropriate, ineffective, or harmful. After a very thorough review of all the evidence - from clinical trials, experts, and patients - we now have a guideline that has properly recognised this complex medical condition and recommends improvements to the level of service that patients can expect from the NHS and social care services.
There will now be a period of implementation, which could take several years as we work collaboratively with colleagues in the NHS and social care to ensure positive change is brought to existing patient pathways and new services are introduced to help more people with ME/CFS.
 
 
Doctors for ME’s article
Putting it into Practice: What NICE ME/CFS means for GPs,
contents include -

• Overview
• Diagnosing ME/CFS
• Principles of care
• The UK context

 
NICE ME/CFS 2021: Q&A summary for GPs, Doctors for ME’s downloadable four page booklet you may find handy to give to your GP or health professional.
 
Topics in the four page Q&A summary include -
What is ME/CFS?
What are the symptoms of ME/CFS?
How is ME/CFS diagnosed?
How do we treat ME/CFS?
What about exercise and CBT?
There is nothing we can do for patients. Why diagnose ME/CFS at all?
So what DO we do, other than just energy management?

•  M.E. Association  •  N.I.C.E.

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.

lease encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME (Myalgic Encephalomyelitis) meeting.
 
The ME Association announced -
Next meeting of the All Party Parliamentary Group on ME - the new NICE guideline.
November 11, 2021
 
The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 - 3 pm on 24 November 2021.  This meeting will focus on the new National Institute for Health and Care Excellence (NICE) guideline on ME and the future of ME medical care. 
Three expert guest speakers will address the APPG and answer questions:
Dr Paul Chrisp, Director of the NICE Centre for Guidelines
Dr Peter Barry, Chair of the NICE ME/CFS Guideline Committee
Sonya Chowdhury, Chief Executive of Action for ME
 
This meeting will be an excellent opportunity for MPs and Peers to discuss the new NICE guideline which is expected to be transformational for ME patients across the UK due to the removal of support for damaging treatments such as graded exercise therapy (GET).
Discussion points for the meeting will include the guideline review process, the delay to the release of the guideline, the recommendations of the new guideline, and next steps for guideline implementation.
The overall aim of the meeting will be to raise awareness amongst MPs and Peers of the issues facing people with ME in the UK, in line with the APPG purpose which is to seek to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.
If an MP or peer wishes to attend, they can contact Carol Monaghan MP, Chair of the APPG on ME, by email at carol.monaghan.mp@parliament.uk.
Carol Monaghan will be able to provide further information on the meeting and zoom details.
 
Dr Charles Shepherd, Hon Medical Adviser MEA, states -
This APPG meeting provides an excellent opportunity for people to contact their Westminster MP about any issue relating to the new NICE guideline that they would like to see their MP raise.
In particular, you may wish your MP to raise the local situation regarding implementation of the new guideline recommendations at your local hospital or community based referral service/clinic - if there is one.
 
The Worcestershire ME Social Group website contains NHS ME/CFS Specialist Services (Worcestershire) information.
 
See our Worcestershire blogs for NICE Guideline, and previous APPG on ME news.
 
Take care, and stay safe everyone.

•  Action for ME  •  A.P.P.G  •  M.E. Association  •  MP  •  N.I.C.E.  
•  Parliament U.K.  •  Worcestershire M.E. Social Group

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.  
•  Research

 NICE ME/CFS: Diagnosis and Management.
NICE releases details of ME/CFS roundtable meeting on 18 October.
NICE guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS) was paused on 18 August.
 
Ahead of the roundtable meeting on 18 October, NICE has today (12 October 2021) released details of the agenda and how the meeting will be run.
 
12 October 2021
Publication of the NICE guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) was paused after several professional organisations contacted NICE to say they had serious concerns about some aspects of the guideline.
NICE has invited representatives from a range of patient and professional organisations to discuss the concerns that were raised.
The discussion will be chaired by Dame Carol Black, who is independent from NICE and from the guideline development process. She will chair the discussion only and no decisions will be made at the meeting.
 
Following the meeting, minutes will be available and NICE aims to reach a swift decision on the future publication of the guideline.
Professor Gillian Leng, NICE chief executive, said:  “We understand that patient groups are anxious to see the guideline published as soon as possible.  We are holding this roundtable to explain how the guideline was developed and the rationale behind the recommendations made and to hear and understand the concerns that have been raised.  We hope there will be an open and honest discussion about these concerns to ensure that the final guideline will be effectively implemented across the system.”
The agenda for the meeting is as follows:

1. Introduction and rules of the meeting – Dame Carol Black
2. Guideline production at NICE - Dr Paul Chrisp, director of the Centre for Guidelines at NICE
3. Aim of the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline - Dr Peter Barry, chair of the ME/CFS guideline committee
4. Discussion of issues raised: diagnosis, graded exercise therapy, children and young people, and cognitive behaviour therapy.
5. Summary - Dame Carol Black.

 
In the House of Lords, on Tuesday 12 October 2021
The forthcoming NICE Guideline was discussed during a short "Health: Chronic Fatigue Syndrome" debate.
“To ask Her Majesty’s Government, further to the decision to delay the planned new guidelines on the Diagnosis and Management of ME/CFS, what assessment they have made of the ability of the National Institute for Health and Care Excellence to carry out its functions; and when they expect such guidance to be published.”
 
Also, this week, Action for ME gave Forward-ME’s update: Forward ME: upcoming NICE Round Table.
October 11, 2021
Update from Forward-ME on the upcoming round table event, hosted by the National Institute for Health and Care Excellence (NICE) next Monday (18 October), to "discuss key issues raised prior to publication" of its paused guideline for M.E.
Forward-ME and our members want to thank the many people with M.E., doctors and researchers who have contacted us to share concerns and frustrations around the delays to publication of the new NICE guideline for M.E.
Forward-ME has been invited to the round table and our following member organisations will also attend individually:

• Action for M.E.
• ME Research UK
• ME Association
• Science for ME
• The 25% ME Group
• The ME Trust
• Tymes Trust
• #MEAction.

Preparations for the round table mirror the issues raised by the M.E. community across social media. The charities are grateful for all the feedback we have received. The round table is an opportunity to ensure the rigorous work of the NICE guideline committee is understood by all care providers.
We are not attending to discuss changes. All Forward-ME members recognise the significance of the recommendations in the new guideline, which has been produced and approved in accordance with NICE’s rigorous procedures, and should be published. We share the frustrations over the delay, and are working to achieve urgent publication.
We look forward to updating the M.E. community in the days following the round table, and we hope this is accompanied by swift publication.
 
The NICE Guideline ME/CFS: Personal Observations 
by Dr Charles Shepherd, the MEA Hon Medical Adviser.
August 18, 2021
We should have been welcoming the arrival of a completely new NICE guideline on ME/CFS today. A guideline that acknowledged ME/CFS as a serious and complex medical condition. In fact, we had sent an embargoed press release and statement from Forward-ME to all the news-media in anticipation of its publication.
It was a guideline that contained sensible advice on activity, energy, and symptom management - along with a revised timeline and advice for early and accurate diagnosis, and it placed special emphasis on the care and management of children and young people and those who have severe or very severe ME/CFS.
Instead, we are discussing the huge disappointment felt by the patient community to yesterday's announcement from NICE to cancel publication today and to pause proceedings while discussions take place around objections to the new recommendations regarding CBT and GET - objections that were discussed and resolved as part of the long review process.
On a personal basis, having spent a considerable amount of my time over the last four years working with colleagues on the preparation of this new guideline, I feel frustrated and angry. The action of a small number of people who have persuaded the leadership at the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and possibly other Royal Colleges, to put pressure on NICE to reconsider what had already been agreed by the guideline committee, is reprehensible.
Dr Shepherd also explained that “the delay is unprecedented”, and described “What’s Next?”
 
The MEA’s FREE MEA NICE Guideline Leaflet provides essential extracts from the DRAFT GUIDELINE that will help you to understand the help and support that should be available from your local health and social care services.
 
 
Amongst the many articles on the MEA website, following the pause of the NICE Guideline.
 
Trial By Error:
An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline
September 16, 2021
 
Letter to NICE from UK charities and support organisations
September 6, 2021

A Letter Urging NICE to Publish ME/CFS Guideline Without Delay
September 1, 2021

•  25% M.E. Group  •  Action for ME  •  Forward ME  •  Government U.K.  •  #MEAction  •  M.E. Association  •  MERUK  •  N.I.C.E.
 •  Parliament U.K.  •  The ME Trust  •  Tymes Trust