Local, National and International News:  just click on the links for further information.
 
World ME Day Debate lead by Sir Sajid Javid, MP for Bromsgrove, was held on the first day of ME/CFS Awareness Month in Westminster Hall, Houses of Parliament.
 
ME Research UK (MERUK) gave their report, with explanations, in particular Houses of Parliament procedures.. 
 
Westminster Hall debates are held not in the chamber of the House of Commons but elsewhere in the Palace of Westminster and provide the opportunity to debate any issue, ranging from major constitutional questions to areas of particular interest to MPs and their constituents, outside the Parliamentary calendar set by the Government. There is no division to vote on the matter, there is no tabling of amendments and the motion is not binding on the government. Westminster Hall debates do allow MPs to raise issues, receive answers from the relevant government department, and can be key to facilitating good political discourse in Parliament as well as gauging likely supporters and areas of common concern.
 
It is within this context that Sir Sajid Javid secured a debate on 1st May on the topic “That this House has considered World ME Day.” It was a forum for MPs to bring to the meeting the experiences of their constituents and to press for progress. Ten spoke in the hour long debate with a response being forthcoming from The Minister for Health and Secondary Care (Andrew Stephenson)
Introducing the topic, the former Secretary of State for Health and Social Care and impetus behind the Delivery Plan process, reminded MPs that he had a personal connection to the disease as his cousin, “Until the age of 13 … was a happy, healthy teenager. She was academically gifted and a talented netball player. Seven years later, today, her life has completely changed.” Sir Sajid continued
Overall, the debate narrated little new but did confirm that publication of a finalised Delivery Plan is not going to happen soon. The full debate is available to watch on parliamentlive.tv from 16.30.
 
 
The ME Association ask -
Westminster Hall Debate: When will the Final Delivery Plan on ME/CFS be published?
May 2, 2024
Sir Sajid Javid hosted a Westminster Hall debate on ME/CFS yesterday. It was called to officially recognise World ME Day on 12 May, but the initial focus from Sir Javid was to raise concerns about when the Delivery Plan on ME/CFS would be published by the Department of Health and Social Care and when we might expext NICE Guideline recommendations to be implemented across the NHS and social care services…
 
 
World ME Alliance  -
Become a #GlobalVoiceForME on May 12th
This year marks the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME, highlighting the urgency of addressing this global health crisis. 
 
In recent times, the landscape of ME has evolved with COVID-19 triggering a surge in the numbers of individuals affected by ME.  Today, we estimate that more than 55 million individuals worldwide are living with the debilitating effects of this condition. Amidst these escalating numbers, member organisations of the World ME Alliance are actively joining forces, amplifying their support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.
With your support, we will be a #GlobalVoiceForME.
 
 
ME Research UK (MERUK) reported on the recognition of ME in New York.
Recognition of International ME Awareness Day 2024
5 May 2024
The first International ME Awareness Day was marked in 1992 and, since then, International ME Awareness Day has become the focal point for many awareness raising, lobbying, and other M.E. initiatives globally.
The latest moves to mark 12th May have come from state legislatures in the US – California and New York. In particular, New York State whose Senate passed Bill J01564 and narrated
 
WHEREAS, It is the custom of this Legislative Body to recognize official days that are set aside to increase awareness of serious illnesses that affect the lives of citizens of New York State; and
WHEREAS, Attendant to such concern, and in full accord with its long-standing traditions, this Legislative Body is justly proud to commemorate the 32nd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York; and
WHEREAS, International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day is observed every year on May 12th to support and recognize people with this disease and other chronic immunological and neurological diseases by raising awareness and providing useful information; and
WHEREAS, On May 12, 2024, people from across the world are encouraged to wear blue to raise awareness and show support for people with ME/CFS, their families and caregivers, and researchers who study this disease; …..
WHEREAS, ME/CFS is a tragic, disabling disease which destroys the lives of many patients and imposes a severe toll on their families, friends, and caretakers; and
WHEREAS, It is imperative that there be greater awareness of this serious health condition, and more must be done to increase awareness and funding at the local, State and National levels; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to commemorate the 32nd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York.
 
And, this was followed by Senate Resolution 1565 which further resolved to ”to memorialize Governor Kathy Hochul to proclaim May 2024, as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Month in the State of New York, in conjunction with the observance of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day”.
 
 
Action for ME (AfME) announce -
World ME Day 2024 | Join our call-to-action
May 03, 2024
This World ME Day, we are supporting the World ME Alliance in becoming a #GlobalVoiceForME.
 
ME is a global health crisis and we must therefore collaborate across the world to combat it. In showing a united stance against ME, sharing research findings, and building much-needed awareness of the condition in every nation, we can create positive change for people affected by ME now, and in the future.
 
In addition to contacting the UK’s WHO National Counterpart, calling on them to become a #GlobalVoiceForME, we want to ensure that momentum gained from the recent Westminster Hall debate is not lost.
We’re calling the Government to fulfil its moral duty to people with ME through committing to funding more, high-quality research into the condition and releasing the full publication of the cross-Government Delivery Plan as a matter of urgency.
 
 
The 25% M.E. Group
ME Awareness 2024 Campaign
ME/CFS and Anaesthesia Factsheet and Podcast
This detailed new information booklet, from the Royal College of Anaesthetists, is a must for anybody with ME who anticipates they may have to have surgery. To make it ME friendly it is downloadable. Please see the 25% ME Group ME Awareness 2024 webpage at https://25megroup.org/me-awareness-2024/.

This excellent resource has been created because people with ME had been approaching the Royal College of Anaesthetists about the lack of information around ME and anaesthesia. (25% ME Group and the ME association had also been contacted by members asking for information about anaesthesia.) Based on these requests from patients, a focus group of people with lived experience of ME and having an anaesthetic was set up by the Royal College of Anaesthetists and the ME Association to gather patients’ experiences. The focus group was led by Dr Anton Krige, a consultant in Intensive Care and anaesthesia. All severities of ME, including very severe ME, were represented at the focus group and were able to input into this resource.
 
 
The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS” Information Sheet" has been updated.  The May 2024 issue is available on our website in the About M.E. section.  The recent group announcement includes Symptoms and Awareness news from Action for ME (AfME),, BACME (British Association of Clinicians in ME/CFS),  ME Research UK (MERUK); and the ME Association.(MEA).

•  25% M.E. Group  •  Action for ME  •  M.E. Association  •  MERUK  •  MP  •  Parliament U.K.  •  Worcestershire M.E. Social Group

Sir Sajid Javid MP joins Action for ME’s Parliamentary Champions Network.
This week, on Wednesday 1 May, Sir Sajid Javid MP leads a debate on ME/CFS research.
Invite your MP to join this ME/CFS Westminster Hall debate in the Houses of Parliament from 16.30 - 17.30. 
 
Action of ME (AfME) announced: Westminster Hall debate on ME/CFS research
April 26, 2024
We are delighted to announce that Sir Sajid Javid MP will be leading a Westminster Hall debate in the Houses of Parliament on Wednesday 1 May, taking place from 16.30 - 17.30.
 
Ahead of World ME Day on 12 May, this debate provides an opportunity for MPs to share the experiences of people living with ME/CFS and consider what more can be done to improve experiences and outcomes.  As a Government minister must respond to the debate, it is important that as many MPs attend as possible.
 
We have therefore developed a template, which you can download, to send to your local MP, encouraging them to attend the Westminster Hall to represent you at the debate.
If you are able and willing to, we also encourage you to include any additional information about your experiences of ME within the message to your MP.
If you are unsure on who your local MP is, you can use the search function on the parliamentary website to identify them and their contact details.
 
We are very grateful to Sir Sajid for ensuring that the voices of people affected by ME are heard and not lost.
 
Sir Sajid Javid MP joins our Parliamentary Champions Network
We are also pleased to formally announce Sir Sajid Javid MP as our newest Parliamentary Champion!   Sir Sajid is committed to supporting people living with ME and as Secretary of State for Health and Social Care, announced the development of the National Delivery Plan on ME/CFS    . for England.
 
On joining our Parliamentary Champions Network  Parliamentary Champions Network, Sir Sajid says:
 
"ME affects the lives of children & adults across the country. The condition is incredibly disabling with fluctuating symptoms making it difficult to take part in everyday activities.
As Health Secretary, I was committed to ensuring better care & support for people living with ME. I look forward to continuing this work as one of Action for M.E.’s Parliamentary Champions."

•  Action for ME  •  MP   •  Parliament U.K.  •  Research 

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 

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.

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 [email protected].
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

 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

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.