Invite your MP to join the next meeting of the All Party Parliamentary Group on ME.  Explain your experiences to your MP, especially since the new NICE guideline was published in October 2021.
 
The meeting previously planned to be held in March, was postponed. 
 
The ME Association (MEA) now state  -
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Wednesday 10 May 2023 at 2pm.  In addition to reconstituting the APPG, the AGM will include:

• a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
• a discussion of support for those with severe ME
• consideration of our workplan for the coming year.
• Minutes of the AGM will be shared in accordance with APPG rules.

 
We'd be really grateful if you could invite your MP to attend.  Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).
Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG. 
 
A template letter for your use, is also available on the MEA website.
 
 
At the end of April 2022 our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
 
The new Myalgic Encephalomyelitis (or Encephalopathy)/ Chronic Fatigue Syndrome: Diagnosis and Management. NICE guideline [NG206] was published in October 2021. 
See 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

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

Invite your MP to join the next meeting of the All Party Parliamentary Group on ME.  Explain your experiences to your MP, especially since the new NICE guideline was published in October 2021.
 
The ME Association (MEA) give details -
Invite your MP to join the next meeting of the All-Party Parliamentary on M.E
March 8, 2023
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 21 March 2023 from 3:30pm-4:30pm. In addition to reconstituting the APPG, the AGM will include:

• a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
• a discussion of support for those with severe ME
• consideration of our workplan for the coming year.
• Minutes of the AGM will be shared in accordance with APPG rules.

 
We'd be really grateful if you could invite your MP to attend.  Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.). 
Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG. 
 
Template email included by the MEA., for your use.
 
 
At the end of April 2022 our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
Plus recent local news:
Worcestershire NHS ME/CFS Local Services News
 
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.
 
Plus, 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.
 
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021. 
See 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


•  Action for ME •  A.P.P.G •  Hereford •  Local News 
•  M.E. Association •  MP •  N.H.S. •  N.I.C.E. 
•  Parliament U.K. •  Worcestershire

APPG Report: Inform your MP about the key issues relating to ME/CFS!.
The ME Association (MEA).  This is the official report from the All Party Parliamentary Group (APPG) on ME that contains key recommendations aimed at increasing research investment and discovery, improving health and social care, and enhancing the lives of people with ME/CFS. It was launched at an official reception with the Rt. Hon. Sajid Javid in May 2022.
 
Last year, the All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) launched an important report - Rethinking ME- and this highlighted vital recommendations to help people with ME receive good quality health and social care. These included the implementation of the 2021 NICE Clinical Guideline on ME/CFS and creating strategies to transform the approach towards ME in health, welfare, social care, research, and education. 
 
Members of the APPG on ME, the former Health Secretary Sajid Javid, and Nicki Strong (Trustee) of the ME Association attended the report’s launch at the Houses of Parliament in May.  The ME Association understands the importance of this report and we believe it will help to shape the future for people with ME and their families.  
 
The Rethinking ME 37 page report is available to download from the MEA’s website.  Plus also available is a template letter to help you write to your local MP .
 
 
Previous ‘Rethinking ME’ Information
 
Sajid Javid ‘Rethinking ME’ after young relative’s battles
1/6/2022
The Times:  Sajid Javid ‘Rethinking ME’ after young relative’s battles. 
A report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis.
 
"Rethinking ME" at APPG on ME meeting, Wednesday 25 May
19/5/2022
Remind your MP to attend the launch of "Rethinking ME" with Sajid Javid, MP for Bromsgrove, and Health and Social Care Secretary.
 
 
 The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.  See 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


•  A.P.P.G   •  Government U.K.  •  M.E. Association  •  MP 
•  National Newspapers  •  N.I.C.E.
•  Parliament U.K.  •  Research 

The Times:  Sajid Javid ‘Rethinking ME’ after young relative’s battles. 
A report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis.
Rethinking ME - APPG on ME Report Launch.
The findings of this report highlights that there has been a long-term disconnect between the treatment deserved by people with ME and what they experience in reality.
“We view these recommendations as a starting point on which to build creative strategies across the governments of the UK, service providers and research institutions for the transformation of our society’s approach to ME. Furthermore, we wish to see the UK take a pioneering stance towards ME research and a compassionate attitude towards people with ME at a time when we are seeing an increasing trend in the development of ME-like symptoms as a result of COVID-19.”
The APPG on ME spent over a year taking evidence from patients, healthcare professionals and charities to produce this report. The 20 recommendations in this report should be considered the starting position for Government policy.
 
Rethinking ME – report launch
The All-Party Parliamentary Group (APPG) on ME met at 3pm on Wednesday 25 May to launch their first report, Rethinking ME. MPs from across the party political divide attended, as well as people with ME, charity representatives and others.
“At this event, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people with ME on their desire for better care and discuss the steps needed to positively transform the way people with ME are treated in the UK.”  Carol Monaghan MP, Chair of the APPG on ME.
All Westminster MPs (and some members of the House of Lords) were invited by Carol Monaghan MP to come to this meeting, and people with ME were asked to encourage their MP to attend.
 
 
Following the APPG on ME meeting on 25 May -
 
Articles from the ME Association -
 
The Times: Sajid Javid ‘Rethinking ME’ after young relative’s battles
By Sean O'Neill
May 26, 2022
The health secretary has spoken of a young relative’s battle with myalgic encephalomyelitis (ME) as he promised a new approach to the debilitating illness
Sajid Javid said that the health service had failed in its attitude towards treatment of the illness but pledged to lead a cross-government initiative on ME. This would involve healthcare, education and the benefits system, while placing a new emphasis on research into the poorly understood condition. He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.
For further information, see the MEA article, and the full article in The Times.
 
Rethinking ME: ‘These recommendations are considered the starting position for Government policy’ Carol Monaghan, MP
May 26, 2022
‘Rethinking ME' is an important report from The All-Party Parliamentary Group (APPG) on ME and was launched at a reception at the House of Commons yesterday afternoon
In attendance were MPs and Members of the House of Lords, representatives from The Department of Health and Social Care (DHSC), The Department of Work and Pensions (DWP), The National Institute for Health and Care Excellence (NICE), and other Government departments, charity representatives and health journalists. Carol Monaghan spoke about the report and there was a speech from the Sajid Javid – The Secretary of State for Health and Social Care. We will have more from the launch event with the full speeches later today.
 
“Some clinicians try their best but I don’t think the system as a whole realises how serious this issue is and how it has been neglected for far too long”.  Sajid Javid, Secretary of State, Department of Health and Social Care
 
See the MEA full article to find out ‘What does the report contain and recommend’, plus ‘who has received the report’.
 
The BMJ: Health secretary pledges more ME/CFS research as he reveals that relative has condition
May 30, 2022
The BMJ have published an article about the recent All Party Parliamentary Group and the statement made by the Health Secretary Sajid Javid. The article is behind a paywall and some extracts are shown below.
 
Extracts
Patients with myalgic encephalomyelitis (ME) can expect to see more research and support for the condition, which “has been neglected for far too long,” England’s health and social care secretary has said.
Speaking at the launch of a report by the All Party Parliamentary Group on Myalgic Encephalomyelitis on 25 May,1 Sajid Javid revealed that one of his own relatives had had her life severely affected by ME, and he pledged to tackle the lack of research on the condition. He will co-chair a round table of international experts next month to help set this research strategy.
Although he told patients attending the launch that he could not “promise miracles” in finding a treatment, he pledged a new cross-government approach to supporting people with ME, which would encompass not only healthcare provision but also education, work and pensions, and local government. 
 
The i: ‘Doctors need to start believing us’: This is what ME patients say Sajid Javid needs to change
May 30, 2022
The i covers the stories of 3 people with severe ME/CFS and the struggles they have faced which has not been helped by poor treatment from the medical profession.  Yet they are hopeful that the recent statement from Sajid Javid, the All-Party Parliamentary Group on ME Report, and the 2021 NICE Guideline will bring much needed improvements for anyone affected by the condition.
 
The MEA Association article gives extracts from the i report, plus also comments from Tony Britton, PR Manager of the MEA, and Dr Charles Shepherd, Hon. Medical Adviser of the MEA.
 
 
At the end of April our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, inform your MP of your situation.
 
 
The APPG on ME official website.
The All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME).  The APPG is a cross-party voice in Westminster building change for people with ME with Carol Monaghan MP serving as Chair. 
Secretariat - The secretariat for the APPG on ME is jointly undertaken by Action for M.E. and The ME Association
 
 
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.
 
•  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MP  •  National Newspapers  •  N.H.S. •  Worcestershire M.E. Social Group 

Remind your MP to attend the launch of "Rethinking ME" with Sajid Javid, MP for Bromsgrove, and Health and Social Care Secretary.
 
Action for ME (AfME) announced -
APPG on M.E. to launch new report, Rethinking M.E.
May 13, 2022
The All-Party Parliamentary Group (APPG) on M.E. have announced a meeting on Wednesday 25 May to launch their first report, Rethinking M.E.  Carol Monaghan MP, Chair of the APPG, says: 
"At this event, we will reflect on the progress being made to improve recognition and understanding of M.E. amongst the medical profession and other relevant professions. We will also hear directly from people M.E. on their desire for better care and support."
All Westminster MPs (and some members of the House of Lords) have been invited by Carol Monaghan MP to come to this meeting, and people with M.E. are welcome to encourage their MP to attend.
 
 
At the end of April our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
 
Announcements from the MEA (ME Association) -
 
All-Party Parliamentary Group on ME to launch report: 'Rethinking ME'
May 13, 2022
 
ME Awareness Day Early Day Motion from Carol Monaghan, MP
May 13, 2022
 
Remind your MP to attend the launch of "Rethinking ME"
May 17, 2022
The APPG Report “Rethinking ME” will be launched at an auspicious event at the House of Commons on May 25th. It will cover key issues of concern - research, management, NHS services, benefits, children, severe ME/CFS etc. - and will make a number of recommendations concerning action that needs to be taken to improve the lives of people with this condition.
 “At this reception, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people ME on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.”
Carol Monaghan, MP, Chair of the APPG on ME.
 
Invitations have already been sent to all MPs and members of the House of Lords, but you can also remind your MP about the importance of this event, by sending an email using the template below (which can be suitably amended or added to if you wish to do so).
You may want to add a short note relating to a personal, local, or national issue of concern. This might include a diagnostic delay, a DWP benefits problem, issues faced by children, or by people severely or very severely affected, lack of a local ME/CFS specialist service, or the need for biomedical research - all of which are covered in the APPG Report.
 
 
All-Party Parliamentary Group on ME launch official website
May 18, 2022
The All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) has today launched its official website.  The APPG is a cross-party voice in Westminster building change for people with ME with Carol Monaghan MP serving as Chair.
Secretariat - The secretariat for the APPG on ME is jointly undertaken by Action for M.E. and The ME Association
 
 
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  •  A.P.P.G  •  Government U.K.   •  M.E. Association 
•  MP  •  N.H.S.  •  Parliament U.K.  •  Worcestershire M.E. Social Group

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.

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) 

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

Early Day Motion on the Retirement of Countess of Mar as Chair of Forward-ME.  Please support our Worcestershire Countess, by encouraging your MP to sign the EDM. 
 
The ME Association (MEA) announced -
Carol Monaghan MP (Chair of the All-Party Parliamentary Group on ME and Deputy Chair of Forward-ME) has tabled an early day motion to mark the retirement of the Countess of Mar from her role as founding Chair of Forward ME.  Lady Mar will continue in her role as patron of the ME Association.

• EDM 90 Notice and Text
• MEA statement about the Countesses retirement from Forward-ME
• Forward-ME Website

 
EDM (Early Day Motion) 90:  Retirement of the Countess of Mar as Chair of Forward-ME.
Motion Text: That this House:

• Marks the retirement of the Countess of Mar as the Founding Chair of Forward-ME,
• Congratulates her on the success of Forward-ME which was established in 2008 to promote effective joint working between charities and organisations in order to maximise impact on behalf of people with Myalgic Encephalomyelitis (ME),
• Acknowledges the far-reaching impact she has had in supporting, representing, and championing people with ME,
• Recognises her work improving medical education and promoting biomedical research,
• Notes her parliamentary advocacy which included leading a landmark House of Lords’ debate on the PACE trial,
• Commends the part she played in securing improvements to the National Institute for Health and Care draft revised guidance on ME,
• Sincerely thanks her for her years of dedicated service to the ME patient community; and wishes the Countess of Mar the very best in her retirement.

 
In April the MEA announced  -
Margaret Mar Retires as Chair of Forward-ME -
Forward-ME is undergoing a reorganisation and considering how it would best serve the patient community in the future. After many years of dedicated service, the Countess of Mar is stepping down and will be replaced by Andrew Morris as Chair.
 
The Forward-ME website contains a personal letter from Margaret Mar, which includes an introduction to Andrew Morris, the new Forward-ME Chair.
Stepping Aside.
It is nearly 13 years since Forward-ME was founded with a core group of nine ME charities and support groups.  We now have more than 17 charities and associate members.  The whole scenario has changed considerably since those early days.  Despair has gradually turned to hope.  There is more public understanding of ME and, with a few notable exceptions, the professions are exhibiting more appreciation of the complexities of the disease.  The rewriting of the NICE Guideline for ME/CFS is eagerly anticipated despite the repeated deferrals of the publication date.  Thanks to the work of the UK CFS/ME Research Collaborative, the grant of more than £3 million for a large genomic study of people with ME is under way. 
From a personal point of view, I have been rewarded by the determination of all Forward-ME members to set aside their differences and to work together to achieve the objectives we agreed upon at our first meeting.  We still have some way to go, but the foundations have been laid for our continued cooperation.  I realise that what is needed for our future is a different approach to our relationships with people outside our small community.  Instead of the ad hoc basis I have worked under, an efficient system of management would significantly enhance our impact.  Good fortune has sent us just the right person in Andrew Morris who has all the skills and experience we need.  Additionally, he has a daughter with ME and the determination to improve the world for people with ME.  As you will see from the minutes of our meeting on 16 March 2021, he has given the matter much thought and has now said that he is willing to take over from me as Chairman.  I will still be around for a while, as it is intended that the changeover should be smooth and it may take a while for Andrew to find his way around.  We will work in tandem until I am no longer needed. He is at the front!
It only remains for me to thank everyone with whom I have been involved over 25 years of working with people with ME, particularly members of Forward-ME, for inspiring me, to wish you well and to remind you all that Unity is Strength!
Margaret Mar
8 April 2021
 
Last year: ME Research UK (MERUK) -
The Countess of Mar - an Appreciation.
The MERUK Appreciation includes -
From 1st May 2020, when the Countess of Mar retires officially from the House of Lords after almost 45 years’ service, the ME community will be losing a champion of the first rank and a redoubtable campaigner for acceptance of the illness, for research and for the proper treatment from government and the NHS of those affected by ME.
Her zeal for a revolution in the perception and treatment of ME/CFS stemmed from her own experience of organophosphate poisoning which led to autonomic dysfunction. Concern turned to action and she was a member of several European Community Select Committees – on the environment, agriculture and consumer protection, and secretary of the All-Party Parliamentary Group on Pesticides and Organophosphates and a leading light and vice-chair of the All-Party Parliamentary Group on ME.
In the House, Hansard records 36 instances of the Countess speaking to the Chamber specifically about ME/CFS (since such records were indexed from 2006). This does not include contributions to debates regarding neurological conditions or concerning those affected my long-term chronic illnesses in general.  The contributions run the full gamut of issues which affect the ME community -  social security, personal independence payments, work capability assessments, children and young persons, as well research. Her comments on the PACE trial (6 February 2013), CBT (18 March 2013), and neurological conditions (11 October 2010) are especially noteworthy and informed, and reward a re-visit.
 
 
Take care, and stay safe everyone.


•  A.P.P.G  •  Forward ME  •  M.E. Association  •  MERUK 
•  MP   •  Parliament U.K. 

Please encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME meeting.
 
The ME Association announced -
APPG on ME: Annual General Meeting and the impact of COVID-19 on people with ME/CFS. 
The Annual General Meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) will take place on Monday 19 April between 11:00 - 12:00. 
Your MP should RSVP to carol.monaghan.mp@parliament.uk if they are hoping to attend this meeting so they can obtain the zoom link.
 
From the MEA article -
In addition to AGM business, this meeting will focus on the impact of the COVID-19 pandemic on the ME community. 
Points of discussion will include the clinical and pathological overlaps between ME and Long Covid, the COVID-19 vaccination programme and JCVI guidance for ME patient prioritisation, and the general challenges facing the ME community at this difficult time.  
At this stage two guest speakers are confirmed who will share their expertise through short presentations and a Q&A discussion: 

1. Dr David Strain, a Senior Clinical Lecturer at the University of Exeter Medical School and Honorary Consultant in medicine for the older adult who is heavily involved in the British Medical Association COVID response team.
2. Dr Nina Muirhead, a Buckinghamshire Healthcare NHS Trust Dermatologist who is actively working to deliver better education for healthcare professionals on the topic of ME.

Background Information relating to the overlap between Long Covid and ME/CFS:
The overlap between ME/CFS and Long covid from a British Medical Association publication, including contributions from Dr David Strain, Dr Nina Muirhead, Dr Charles Shepherd and Dr Amy Small can be read here.

• Article in Pharma Technology Focus
• Dr David Strain talking on the BBC Horizon programme on Long Covid.

 
For local Covid-19 advice and guidance, see the Worcestershire County Council news items, and for Covid-19 information specifically for people affected by ME/CFS see further posts on the blog.

Take care, and stay safe everyone.

•  A.P.P.G  •  B.B.C.  •  Coronavirus (COVID 19)  •  Local News 
•  M.E. Association  •  MP   •  Post COVID Syndrome (Long COVID)  •  Parliament U.K.  •  Worcestershire County Council