Forthcoming APPG on ME meeting, before Christmas.
The APPG on ME: Inaugural Meeting 17 December.
 
The ME Association (MEA) announce the forthcoming meeting.  From the following you will see that all MPs have received information of this meeting,  Please inform your local MP why you would like your constituency represented.
 
We are delighted to announce that Jo Platt MP has agreed to be put forward to Chair the All-Party Parliamentary Group (APPG) on ME. The APPG's inaugural meeting will take place on Tuesday 17 December, from 5pm - 6:30pm.
 
The agenda of the meeting will be as follows:
17:00 - Welcome
17:10 - Election of Chair
17:15 - Election of Members
17:20 - Agree APPG purpose
17:40 - Priorities for the year ahead
18:00 - Any other business
18:30 - Close
 
We have already contacted every MP to encourage them to attend the meeting but have also developed a template for you to send to your local MP, also requesting their attendance. This is available on the APPG’s website, here.
If you are unsure on who your local MP is and how to contact them, you can use this tool, available on the Parliament website.
 
Communication of the APPG's activities
As previously mentioned, we want to ensure that the work of the APPG has the most impact it can for people affected by ME.  This includes ensuring that its activities and purpose are clearly communicated and done so to an appropriate level of detail.
We will therefore be providing a detailed summary of each APPG meeting, clearly laying out what was discussed and any relevant actions that are developed. This will be provided alongside the official minutes, and all will be shared via social media, and made available on the APPG's website.
How you can support the APPG's work
To further support the APPG, we will continue to provide templates for you to invite your local MP to attend meetings, in advance, to further spread awareness of ME within Parliament. These templates will again, be shared across social media and on the APPG's website.
 
 
All-Party Parliamentary Group on ME
Who we are - All-Party Parliamentary Group on ME
 
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament and the House of Lords.
It seeks to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.
NOTE: This page will be updated following the inaugural meeting of the new APPG on 17 December 2024. Read more here.
 
 
The secretariat for the APPG on ME is jointly undertaken by Action for M.E. and The ME Association.
 
 
Action for ME (AfME) announcement
As previously mentioned, we want to ensure that the work of the APPG has the most impact it can for people affected by ME. This includes ensuring that its activities and purpose are clearly communicated and done so to an appropriate level of detail.
 
We will therefore be providing a detailed summary of each APPG meeting, clearly laying out what was discussed and any relevant actions that are developed. This will be provided alongside the official minutes and all will be shared via social media, and made available on the APPG's website.
We have also agreed that the #ThereForME campaign will assist Action for ME in sharing these updates, and others relating to the APPG's work, to further increase reach and impact.
 
How you can support the APPG's work
To further support the APPG, we will continue to provide templates for you to invite your local MP to attend meetings, in advance, to further spread awareness of ME within Parliament.
These templates will again, be shared across social media and on the APPG's website.
 
A thank you
We are excited to work closely with Jo and the rest of the APPG's Members and Officers, moving forwards and would like to thank everyone who has helped get the APPG running once again.

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

Take part in this final stage of research to develop an assessment of ME/CFS symptoms.
 
The ME Association (MEA) announce
Research: The Index of ME Symptoms (TIMES) for ME/CFS
September 13, 2024
The ME Association is funding a study led by Prof Sarah Tyson (who also has ME) from the University of Manchester (as pictured), to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services. 
“Many thanks to the thousands of you who have supported the clinical assessment toolkit project. We are now entering the final stages of the data collection, which is a busy time!
Professor Sarah Tyson” 
 
The final stage of the research is to develop an assessment of ME/CFS symptoms, called The Index of ME Symptoms (TIMES) by working with people with ME/CFS and clinicians in specialist services.   We have completed the initial analysis for the TIMES, which assesses symptomology and we have made quite extensive revision in the light of that analysis and your feedback.  It is now much shorter and simpler with just one question per symptom, although there are still quite a lot of symptoms, as we need to be comprehensive. Therefore, we would now like to double-check that the revised version provides the robust data that we expect it to. 
N.B. We only need a smaller number of participants (250) for this analysis, so we will close the survey once we have reached this number, which will probably be in a couple of weeks. Please be aware that there will be a couple more surveys coming in the next few weeks.  If you have any questions or comments, please contact Prof Sarah Tyson, the Chief Investigator at [email protected]
 
Please could you help by completing the following survey.
Developing a clinical assessment toolkit for people with ME/CFS and clinical services.  We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) to complete this online questionnaire.  People whose ME/CFS was triggered by a covid infection (i.e. long covid) are also invited to take part.  N.B. We only need a smaller number of participants (250) for this analysis, so we will close the survey once we have reached this number, which will probably be in a couple of weeks. Please be aware that there will be a couple more surveys coming in the next few weeks.
If you have any questions or comments, please contact Prof Sarah Tyson, the Chief Investigator at [email protected]
 
 
Our blog’s previous request from Prof Sarah Tyson, earlier this year
ME/CFS Research:  request from organisers for participants
11/4/2024.  Below is an Invitation to participate in the development of a Clinical Assessment Toolkit for people with ME/CFS, and the Clinical Services.
 
 
The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS” Information Sheet" was updated in May 2024.  It 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).

•  Action for ME  •  M.E. Association  •  MERUK  •  Research  •  Worcestershire M.E. Social Group

Recent News from ME Research UK, Action for ME and the ME Association.
Former Worcestershire MP’s involvement
 
ME Research UK (MERUK) give ME/CFS Delivery Plan detailed announcement.

Winter 2024/2025 Publication announced for ME/CFS Delivery Plan
13 August 2024
Baroness Scott of Needham Market tabled 3 linked questions on 29 July 2024 asking the Dept of Health and Social Care to provide - an update on publication of the cross-Government ME/CFS Delivery Plan (UIN HL452), whether the Delivery Plan will include provision for hospital treatment and full consideration of how to safely prevent malnutrition in very severe ME (UIN HL453), and querying what assessment the government has made of the percentage of the research budget allocated for ME/CFS and Long Covid, and whether they plan to increase this amount (UIN HL454).
 
Answering on behalf of the government in a combined response, Baroness Merton (Parliamentary Under-Secretary at the Department of Health and Social Care) revealed that -
 
A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).  In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation.  It is now a priority for the Department, and it is our intention to publish a response in the coming months.  The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.
 
No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID.  Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council.  Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research.  The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.
 
It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions.  The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID.  These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
 
What does this tell us?

• publication of the Delivery Plan - a process announced in May 2022 - is a ‘priority’.
• the government’s response to the consultation phase of the draft Delivery Plan will be forthcoming ‘in the coming months’.
• the full Delivery Plan will be published in the Winter but no firm date given despite the fact that publication has slid back and was initially due by the end of 2022, …. then as soon as possible in 2023 ….. and now slated for end of 2024 …. or beginning of 2025.
• NIHR continues with its sleight of hand by referencing only past 5 years of funding with its support of deCodeME whilst ignoring decades of underinvestment in biomedical research into ME/CFS and MRC’s funding of biopsychosocial research.
• Egregious underfunding of ME/CFS research when compared to long COVID.
• No comment on whether ME/CFS research funding will be increased.
• Despite decade’s long call for ring-fenced ME/CFS research funding, (cf. CMO Working Group and Gibson Report) it is confirmed that “not usual practice for the NIHR to ring-fence funds” for particular illnesses.  It appears the government is oblivious to fact that both Germany and The Netherlands (28.5 million euros 10-year programme) have strategic ME/CFS research collaboratives precisely because of ring-fenced funding.
• UIN HL453 went unanswered.

 
Plus ça change
This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research.  It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems with only an intense research programme can help resolve.  It is an illness whose time has certainly come.
 
Group on Scientific Research into ME Report (Gibson Report) Nov 2006
 
 
Worcestershire ME Social Group’s blog, and 'About ME' information.
The late Dr Richard Taylor, MP for Wyre Forest, (from 2001 to 2010), was Vice chairman of this all-party Group for Scientific Research into ME (GRSME).
 
 
Worcestershire ME Social Group’s blog,
World ME Day Sunday 12 May and ME/CFS Awareness Week 6 - 12 May
7/5/2024
World ME Day Debate lead by Sir Sajid Javid, MP for Bromsgrove (2010 - 2024), was held on the first day of ME/CFS Awareness Month in Westminster Hall, Houses of Parliament.  “Introducing the topic, the former Secretary of State for Health and Social Care and impetus behind the Delivery Plan process,”
 
 
News from Action for ME (AfME).
Labour commits to publish full Delivery Plan on ME/CFS
August 08, 2024
Statement by Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public Health and Prevention.
 
In response to concerns from the ME community relating to the publication of the full Delivery Plan on ME/CFS, following the Government's response to a question by Baroness Scott of Needham Market on 29 July, Andrew Gwynne MP has confirmed Labour's commitment to publishing the full Delivery Plan on ME/CFS:
 
"It isn’t being delayed again… I’ve asked my officials to publish the plan, which they will now do. The last government sadly stalled the process. Officials are now putting everything together and I should have something to see very soon pending publication."
 
In response to Andrew Gwynne MP's statement, Action for M.E. CEO, Sonya Chowdhury, said:
"We are delighted to hear the Labour Government's commitment to publishing the full Delivery Plan on ME/CFS and know this announcement will be met with a level of relief from the ME community. It is now essential that, once published, the commitments made to people affected by ME within the Plan are implemented as a priority, including urgent action to address the lack of research funding into the condition, and we look forward to working with the Labour Government to ensure this happens."
 
Parliamentary Question: Baroness Scott of Needham Market, 29 July 2024
“To ask His Majesty's Government what assessment they have made of the percentage of the research budget allocated for myalgic encephalomyelitis and Long Covid, and whether they plan to increase this amount.”
Answer: Baroness Merron, 06 August 2024
“A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.
 
“No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.
“It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.”
 
 
Plus. Information from the ME Association(MEA)
Labour government commits to publishing the final delivery plan on ME/CFS
August 7, 2024
Parliamentary Question: Baroness Scott of Needham Market, Liberal Democrat, 29 July 2024
“To ask His Majesty's Government what assessment they have made of the percentage of the research budget allocated for myalgic encephalomyelitis and Long Covid, and whether they plan to increase this amount.”
 
Answer: Baroness Merron, Labour, 06 August 2024:
“A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.
“No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.
“It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.”
 
 
Previously, last month, the ME Association (MEA) stated a Parliamentary Question
July 26, 2024:
What steps does the Government plan to take to improve support for people with ME 
 
QUESTION: Dr Rupa Huq, Labour, Eailing Central and Acton: To ask the Secretary of State for Health and Social Care, what steps he plans to take to improve support for people with myalgic encephalomyelitis.
ANSWER: Andrew Gwynne, Labour, Gorton and Denton –  Parliamentary Under-Secretary of State at the Department of Health and Social Care:
 
“Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services that meet the needs of their population, subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME/CFS diagnosis and management, published in October 2021.
The Department funds research into ME/CFS through the National Institute for Health and Care Research (NIHR). The NIHR, together with the Medical Research Council, is funding the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. A decision on the next steps for ME/CFS at the national level will be taken in the coming weeks.”
 
MEA Comment
We have a new Labour Government and this is a recurring parliamentary question on ME/CFS with the same ministerial answer.
As per the APPG on ME announcement, we understand the need to ensure that ME is kept firmly on the agenda of the new Government and that the All-Party Parliamentary Group (APPG) on ME will play an important part in this.
The ME Association will continue to campaign for people with ME/CFS and we would urge the new Labour Government to do its very best to ensure there are no further delays in publishing the Delivery Plan on ME/CFS.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
 
A reminder -
The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS” Information Sheet" was updated in May 2024.  It 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).
 
Contact your local MP.  Ensure your local MP is aware of the situation.
 
•  Action for ME  •  Government U.K.  •  M.E. Association  •  MERUK 
•  MP  •  N.H.S.  

Building an NHS that’s there for people with Long Covid and ME.
 
Action for ME (AfME) and the ME Association (MEA), both give full details of this new campaign on their websites.

From the ME Association (MEA) website:
You can support #ThereForME by:

1. Signing the open letter by 02 August (open to all ME/LC patients and carers in the UK).
2. Sharing the policy brief and #ThereForME campaign on social media.
3. Writing to your MP to share the policy brief and recommendations.
4. Subscribing to the #ThereForME substack to stay updated on the campaign.
   

 
AfME announce -
#ThereForME campaign
July 23, 2024
#ThereForME is a new campaign led by patients and carers calling for an NHS that’s there for people with ME and Long Covid. The new Labour Government has come into office with a powerful promise: to transform a broken healthcare system, building an NHS that is fit for the future.
 
To achieve this, the NHS must deliver for people with Long Covid and ME.
#ThereForME have published a new report, drawing on data from over 300 people with Long Covid/ME (+ their carers) and endorsed by 15 organisations, including Action for M.E.
 
 
The MEA announce -
Building an NHS that’s there for people with Long Covid and ME
July 23, 2024
 
ThereForME is a patient- and carer-led campaign calling for an NHS that’s there for people with ME and Long Covid. The new Labour Government has come into office with a powerful promise: to transform a broken healthcare system, building an NHS that is fit for the future.
 
To achieve this, the NHS must deliver for people suffering with Long Covid and ME. We have published a new policy brief, drawing on data from over 300 people with Long Covid/ME and endorsed by 15 organisations including the ME Association.  We’re calling for a transformation in care for people with Long Covid and ME: an NHS that’s there for them when they need it, offering safe care and access to the best that modern science can offer. 
 
 
Sajid Javid, former MP for Bromsgrove.
AfME announce
Sajid Javid in The Times
July 20, 2024
Ahead of the landmark inquiry into the death of Maeve Boothby O'Neill, Sajid Javid, former MP and Health Secretary has called for Labour finish the work he began in 2021-22, stating…
Read more >>
 
 
How to support the campaign -
AfME and the MEA  both give full details of this new campaign on their websites.

•  Action for ME  •  Government U.K.  •  M.E. Association  •  N.H.S. 
•  Post COVID Syndrome (Long COVID) 

Following the General Election, Action for M.E. and the ME Association have provided the following update, as joint-Secretariat for the All-Party Parliamentary Group (APPG) on ME.
 
“ We understand the need to ensure that ME is kept firmly on the agenda of the new Government and that the All-Party Parliamentary Group (APPG) on ME plays an important part in this.
As is parliamentary procedure, all APPG’s are required to disband following the call of a general election and must then be reconstituted, once the election has concluded, and a new Government is in place.
 
Sadly, the APPG’s previous Chair, Carol Monaghan, was not re-elected as MP for Glasgow North West and therefore, we will now work to identify and secure a new Chair.
Sonya Chowdhury, CEO of Action for M.E., and Charles Shepherd, Honorary Medical Advisor to the ME Association, will meet in the coming weeks to discuss this further.
Whilst these discussions can take place, ministerial appointments are still ongoing and therefore, with summer recess approaching, now is not an appropriate time to look at reconstituting the APPG.  Instead, whilst appointments are being made, we will use this time to review the APPG’s communication strategy to ensure that once it is reconstituted, we can share information relating to the APPG’s work and outcomes more effectively.  As part of this, we will ensure that any updates on the reconstitution of the APPG on ME and its incoming Chair, are shared as soon as possible. ”
 
 
Local MPs (Worcestershire, and surrounding areas)
The Worcestershire ME Social Group website list of Worcestershire MPs has been updated with all newly elected MPs.  Plus, this now includes a link to all West Midlands MPs.
 
On 9 July, all Worcestershire MPs heard from the Worcestershire M.E. Social Group.  This notification gave a few extracts from the Social Group website to give background information, particularly for newly elected MPs, firstly explaining that the Worcestershire ME Social Group, is for all people affected by M.E. (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), PVFS (Post Viral Fatigue Syndrome), FMS (Fibromyalgia Syndrome) and Long Covid, within Worcestershire and surrounding areas. 
 
Our MPs received Worcestershire NHS M.E./CFS and PCS Services News giving an update on the local NHS ME/CFS situation received on 3 January 2024, from Marina Townend, Specialist Occupational Therapist/Team Lead, of the ME(Myalgic Encephalomyelitis),/CFS (Chronic Fatigue Syndrome) and PCS (Post-Covid Syndrome) Services, plus NHS ME/CFS Specialist Services.. 
 
Also, it was pointed out to all our MPs that The Worcestershire M.E. Social Group’s Symptoms of ME/CFS information sheet  has been updated, with the “Symptoms for Suspecting ME/CFS” Section of Myalgic Encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management: NICE guideline [NG206], published on 29 October 2021, now included on the reverse.   .Many people have found this information sheet useful when describing how they feel, and explaining their situations to their doctors.  Hopefully you will also find it useful when you contact your MP,
 
 
All-Party Parliamentary Group APPG on ME
A cross-party voice in Westminster building change for people with myalgic encephalomyelitis (ME).
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME.

•  Action for ME  •  A.P.P.G  •  M.E. Association  •  MP  •  Worcestershire  •  Worcestershire M.E. Social Group

Action for ME (AfME), Joint Secretariat for the APPG together with the ME Association (MEA), thank Carol Monaghan, and update us on the current APPG on ME situation.
 
APPG on ME Update - Carol Monaghan 
July 05, 2024
Carol Monaghan, previously Chair of the All-Party Parliamentary Group on ME and MP for Glasgow West, has lost her seat in the general election.  As joint-Secretariat for the APPG, we will now be working closely with the ME Association to identify a new Chair and to reconstitute the APPG.
 
All of us from Action for M.E. would likely to sincerely thank Carol for her incredible dedication and commitment to people with ME and Charing the APPG over recent years.  It has been an honour to work alongside her, and we are all deeply sorry that we will no longer be able to work with her in this way.  We will ensure that updates relating to the APPG are shared as soon as they are available.
 
 
Our thanks from Worcestershire to Carol. 
Just search for Monaghan on the Worcestershire ME Social Group website to see how much Carol Monaghan has been involved with helping people living with M.E. during the her time as Chair of the APPG on ME.

•  Action for ME  •  A.P.P.G  •  MP  •  Worcestershire M.E. Social Group

Previous Worcestershire MPs are listed on the Social Group website.  After the General Election the new MPs for Bromsgrove, Droitwich & Evesham, Redditch, West Worcestershire, Worcester, and Wyre Forest, will be on the Worcestershire ME Social Group website for your convenience.  Also, all new Worcestershire MPs will receive ME/CFS information from the Social Group.
 
 
APPG on ME (Myalgic Encephalomyelitis).  A cross-party voice in Westminster building change for people with Myalgic Encephalomyelitis (ME)
 
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME.
General election update  -  In accordance with the APPG rules, from Friday, all APPGs will cease to exist, including this APPG on ME. When the next Parliament is established, all APPGs will need to be reformed. All updates will be posted on this website should this be the case.
 
On 1 May, last month, Sir Sajid Javid, previously MP for Bromsgrove, lead a debate on ME/CFS research in the Houses of Parliament.  ME Research UK (MERUK) gave their report, with explanations, including in particular Houses of Parliament procedures. 
 
Following the ME/CFS debate Robin Walker, previously MP for Worcester, received:
 
The following quote from Hansard concerns me, particularly as the APPG on ME Inquiry into NHS Service Provision Report Inquiry into NHS Service Provision for people with ME/CFS  was published in March 2010, and the 2010 General Election took place just two months later in May 2010.
 
Hansard 1st May 2024, Volume 749 Column 160WH
“The final delivery plan will be published later this year”. That was the end of last year. We are now in May 2024, approaching exactly two years since I made the initial commitment. 
I am also now hearing disturbing reports that, despite two years of waiting, the final delivery plan may not be published until the end of this year. Everyone knows that the Prime Minister has committed the country to a general election by the end of this year. We also know that when that general election is called, there will be no Government publication of any sort, which means there is absolutely no time to waste. I ask the Minister, when he responds, to give a specific commitment to the House that the final delivery plan will be published before the summer recess - or at the very latest, just after.
 
On 8 May, Robin Walker, previously MP for Worcester, contacted the Department of Health and Social Care concerning the Delivery Plan.  The forthcoming General Election was then announced on 23 May, and Robin Walker is standing down as the Worcester MP.  A response [jpeg, pdf below] dated 5 June from the Department of Health and Social Care has since been received explaining “What happens on the issue of ME/CFS in the future will be a matter for the incoming Government”.  It is understood that the new Worcester MP will receive information concerning the published: My full reality: the interim delivery plan on ME/CFS, and this will be followed up.

Action for ME (AfME) now explain - General election - what happens now?
May 23, 2024
We are aware the general election causes concern for many people within the ME community in relation to the progress of the Delivery Plan.
We have been assured on numerous occasions that the Plan holds cross-party support and expect work to continue as planned.
 
Parliament will be dissolved on 30 May meaning all MPs will lose their parliamentary status and their access to parliamentary resources.
 
Following the general election, we will work collaboratively to reconstitute the APPG. This will require an inaugural meeting to be held and new officers elected. An application will be submitted to register the APPG and the APPG will only exist once the Registry Office has approved its inclusion on the APPR Register. The Guide to the Rules for APPGs can be found HERE.

The ME Association Template Letter: General Election
June 13, 2024
You can write to your general election candidates with our template letter to make them aware of the issues facing people with ME/CFS.

Find out about candidates in your area from 'Who Can I Vote For?'.
Enter your postcode to find about your candidates.

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

The Worcestershire M.E. Social Group’s "Symptoms of M.E./CFS" Information Sheet has been updated, with the "Symptoms for Suspecting ME/CFS" Section of Myalgic Encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management: NICE guideline [NG206], published on 29 October 2021, now included on the reverse.  The updated “Symptoms of M.E./CFS” Information Sheet contains the original first page (with the header and footers updated), plus an extract from the 2021 ME/CFS NICE Guideline overleaf.

The Worcestershire M.E. Support Group produced a ‘Symptoms of M.E./CFS’ information sheet well over twenty years ago, and it continues to be available on our Group’s website in the About M.E. section.  Many people have found this information sheet useful when describing how they feel, and explaining their situations to doctors. 
 
 
The ME Association’s (MEA) website contains symptoms information from the NICE Guideline, including -
 
ME/CFS Symptoms and diagnosis

• ME/CFS and Long Covid Overview
  
• ME/CFS Symptoms & Diagnosis
  
• ME/CFS Further Information
  
• NICE Guideline ME/CFS
  

 
Also the MEA have given Key symptoms with explanations that should all be present for a diagnosis of ME/CFS including -  Debilitating fatigue;  Post-exertional malaise;  Unrefreshing or disturbed sleep;  and Cognitive difficulties.  The MEA website also contains sections on:  Other common symptoms;  Referral to ME/CFS Specialist;  and Severity of ME/CFS.
 
 
Action for M.E. (AfME) explain -
Range of symptoms
Everyone who experiences M.E. has a different pattern of illness, and symptoms and severity can fluctuate and change over time.  M.E. is not "feeling tired."
The 2021 NICE guideline for M.E. for health professionals in England and Wales instead talks about "debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest."
While it’s important to find out more about the range of symptoms experienced by different people with M.E. - it is also important to know that people with M.E. may only experience a few of them and at varying levels of severity.  Always get new symptoms checked by your doctor, as they may be unrelated to M.E. Women often find that symptoms worsen at different times in their menstrual cycle.
 
AfME give detailed explanations on -  Feeling generally unwell;  Sleep disturbance;  Pain - (If pain, especially muscle pain, is more of a problem than fatigue, fibromyalgia may be an issue);  Cognitive difficulties, sometimes collectively called "brain fog";  Problems with the nervous system;  Digestive problems;  Intolerance and increased sensitivity:
 
 
ME Research UK (MERUK) also has a useful section on ‘What is ME?', and explain that ME/CFS is an illness affecting many different parts of the body, which can last for a long time in some people.
 
MERUK give detailed information on -  The main symptoms;  What is the cause?;  Living with ME/CFS;  How is ME/CFS diagnosed?;  What treatments are available?;  The role of ME Research UK;  More information about ME/CFS. 
 
MERUK state - For a more detailed explanation of ME/CFS, its symptoms and treatment, we recommend the website of the US Centers for Disease Control and Prevention.
 
 
BACME (British Association of Clinicians in ME/CFS)
In BACME’s response (pdf) to the 2021 NICE Guidance on ME/CFS, Bacme, stated that the NICE guideline provides information regarding diagnosis including the importance of recognising the key symptom of Post-Exertional Malaise.
 
This response also states that “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.

•  Action for ME  •  M.E. Association  •  MERUK  •  N.I.C.E.

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