The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME).  (APPG on M.E.) 
Contact your local MP, and explain your situation.  When the date of the next APPG on M.E. meeting is announced, you will be pleased to know that you have already spoken to your local MP.    The Worcestershire ME Social group website contains a list of Local MPs: List of MPs in the West Midlands (Herefordshire and Worcestershire)
 
The secretariat for the APPG on ME is jointly undertaken by Action for ME and The ME Association.

The ME Association (MEA) recently announced
MP Tessa Munt elected as the new Chair of the APPG on M.E.
January 30, 2026
 
As you may already be aware, Tessa Munt MP has officially been appointed Chair of the APPG on ME, following the group's Annual General Meeting last week.
We are delighted to be working more closely with Tessa and are so thankful for her ongoing commitment to the ME community.
We would also like to sincerely thank Jo Platt MP, and her office, for serving as the APPGs most recent Chair and leading the group since it was reconstituted at the end of 2024. We are very pleased that Jo will be continuing to support the APPG as an Officer and look forward to continuing to work closely with her.
 
The APPG's website has since been updated to reflect these changes.
The Secretariat will be meeting with Tessa’s team next week to agree on upcoming meeting dates and as soon as these are scheduled, they will be shared on the APPG's website so that you can invite your MP with advanced notice.
Additionally, we will be uploading all AGM-related documents, alongside the minutes from the December 2025 meeting, to the APPG's website, once they have been approved.

The APPG on ME website states:
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament and the House of Lords.
All-Party Parliamentary Groups (APPGs) are informal groups of MPs and Members of the House of Lords who share an interest in a particular topic. APPGs can’t make laws and are not official parliamentary committees, but can be influential in Parliament and beyond. The UK Parliament website maintains a register of all APPGs.
The APPG on 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.
 
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament (MPs) and members of the House of Lords (Peers).
The Group meets several times a year and uses each meeting to focus on a specific issue affecting people with ME.  Sometimes experts are invited to give presentations on a specific topic, to improve the understanding and knowledge of the APPGs members.  This helps members both to support individual constituents and to advocate for policy change in Parliament.
The APPG creates an important setting to show politicians the scale of challenges facing people with ME, and give space for discussions on how best this can be changed.
 
Get to know the APPG on M.E Chair, Officers, and Members, alongside more about the organisations who support our work.  Encourage your MP to attend meetings, and join the APPG on M.E. membership.  Current Membership:
Bradley Thomas MP,for Bromsgrove and the Villages  (APPG for M.E. Officer)
Dame Harriett Baldwin MP for West Worcestershire, (APPG for M.E. Member)
 
 
Action for ME (AfME)
Parliamentary Champions
About the AfME:s Network
Our network of Parliamentary Champions are our 'go-to' individuals when engaging with Government and building support for our campaigns more broadly in Parliament and beyond.
Our champions are supportive of our work to create a world without ME and give a voice to the estimated 1.35m people in the UK who live with ME or ME-like symptoms, including post-exertional malaise.
 
What does a Parliamentary Champion do?
Parliamentary Champions support us in raising awareness of ME by helping to include ME and related issues in parliamentary business and working with media to highlight key campaigns.
MPs and Peers have a wealth of knowledge so our Champions may also suggest other ways to raise the profile of ME according to their skillset
 
Dame Harriett Baldwin, MP for West Worcestershire, (a AfME, Champion) stated -
“I am proud to become the latest Parliamentary Champion for Action for ME, supporting their vital work to raise awareness of this often misunderstood illness.
My commitment is to ensure that the voices of those living with ME are heard in Parliament, and I will work with colleagues to push for meaningful change to improve the support and services available to people with ME.”

List of Herefordshire and Worcestershire MPs with email/websites is
also available for you on the Social Group:s website https://worcsmegroup.weebly.com/links.html#4WorcsMPs
for your convenience.

Please encourage your MP to attend  -
ME/CFS Westminster Hall debate on Wednesday19 November,
Overlapping Illnesses Alliance (OIA) Parliamentary Drop-in Event, Tue, 25 November.
And sign the ME/CFS Final delivery plan EDM (Early Day Motion), & join the APPG (All Party Parliamentary Group) on ME.
 
A full list of Herefordshire and Worcestershire MPs with email/websites is available for you.
 
 
Karen Hargrave from #ThereForME circulated -
Westminster Hall Debate - Wednesday 19 November
In a break from our usual schedule, we wanted to let you know about a Westminster Hall Debate, focused on government support for ME, which will be taking place next Wednesday 19 November from 16:30-17:30.  And we need your help.
 
The debate has been tabled by Lib Dem #ThereForMP extraordinaire Tessa Munt.  Westminster Hall debates are a key way for backbench MPs to raise an issue and receive a government response.  They take place away from the House of Commons main chamber and provide a way for MPs to engage on issues they care about.  A packed Westminster Hall debate can be a strong sign to the government about levels of parliamentary support on an issue.  And with the recent Final Delivery Plan publication, there’s no time like the present to talk about what comes next.
 
You can help by writing to your MP to let them know about the debate and ask them to speak on your behalf. We’ve got a template here that you can use to write to your MP - although the more you can personalise it, the more likely it is that your MP will take notice.
Let’s pack Westminster Hall.

The ME Association highlight the Overlapping Illnesses Alliance: Parliamentary Drop in Event (Time: 3pm - 5pm; Venue: Room U, Portcullis House,). Ask your MP to attend’
UK charities have joined together to create an Overlapping Illness Alliance (OIA), which includes the following organisations EDS/HSD UK, Long Covid Support, Long Covid Kids, PoTS UK, Mast Cell Action, Action for ME and Forward ME (of which the ME Association is a member).
The OIA is a coalition of charities working to improve recognition, care and support for people of all ages living with overlapping conditions such as Myalgic Encephalomyelitis (ME), Long Covid, Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder, Postural Orthostatic Tachycardia Syndrome (PoTS), and Mast Cell Activation Syndrome (MCAS).
This alliance should hopefully give more weight to gaining support for people with these conditions and highlight the need for research.
 
This is a vital opportunity for MPs to hear directly from charities working to improve recognition, care and support for people living with complex, overlapping conditions. MPs are far more likely to engage when they know how this affects their constituents, so your voice essential to ask them to attend this event.
Please use the template letter available from the MEA
 
Info for Herefordshire and Worcestershire MPs with email/websites is available for you.

The ME Association announce 
September 23, 2025
APPG (All Party Parliamentary Group) on ME - 10th September meeting minutes now available
The minutes from the 10 September APPG meeting are now available on the  APPG's website. (APPG’s website).
 
The Group first discussed the Delivery Plan, welcoming its release, but highlighting its failure to address many concerns previously raised by charities and people affected by ME experience throughout the consultation process.
The recent EDM, tabled by Tom Morrison MP was also noted before Sonya Chowdhury, Action for ME Chief Executive, provided an update regarding ongoing engagement as part of the Delivery Plan’s implementation.
 
They then heard directly from three people with lived experience as part of the Severe ME Inquiry. Whilst attendance at the meeting was heavily impacted by TFL strikes and other parliamentary activity, all members of the APPG have received an evidence pack containing a variety of recorded and written contributions from people with severe ME and/or their carers.
Members are now reviewing the evidence pack and the APPG will look to pull together all of the evidence shared as part of the inquiry at its October meeting, before developing a report and subsequent recommendations.
 
It was also noted that the APPG was yet to receive a response from the letters shared by Jo Platt MP, on behalf of the group, to Patrick Vallance and Minister Dalton.
The APPG would like to once again thank the people with lived experience who provided evidence as part of the Severe ME Inquiry, recognising the importance of their voices being heard, but also the post-exertional impact that likely followed.
 
 
Action for ME report on the planned October meeting  -
APPG on ME - October meeting update
29 October 2025
Unfortunately, the APPG's severe ME inquiry evidence session, scheduled for last Thursday, did not go ahead due to a limited number of MPs being in Parliament that day.
We are currently working to rearrange the session to ensure that the evidence session still goes ahead and will share further news on this once a new date has been secured.
Chair of the APPG, Jo Platt MP, shared the following update:
“Thank you to everyone who has shown such strong interest in the APPG inquiry into Myalgic Encephalomyelitis (ME). We deeply value your engagement and support."
 
The evidence session scheduled for last week unfortunately did not go ahead, as many MPs had returned to their constituencies on that day. While invitations were sent to all members, the session fell on a day without a three-line whip in Parliament. This meant MPs were not formally required to be in Westminster and typically use that time to meet with constituents. This was especially the case following a three-line whip the previous Thursday, which had already extended their time in Parliament.
It’s important to emphasise that this does not reflect a lack of commitment from MPs. I’ve had meaningful conversations with colleagues across the House about ME and the work of the APPG, and there is genuine interest and concern. The timing simply didn’t align.
We are working to reschedule the session as soon as possible and will keep you updated. Thank you again for your patience and continued advocacy.”
Jo Platt MP, Chair, APPG o ME,


Is my local MP part of the APPG on ME?
You can find a full list of APPG members and officers on the APPG's website, here.
If your local MP is not currently a member or an officer, then we would encourage you to write to them using this template letter, asking that they join the APPG and show their support for people affected by ME.
 
 
About the APPG 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 people with ME and encourage biomedical research into the cause and treatment of ME. Secretariat for the APPG is provided by Action for ME which is jointly funded with the ME Association.

Has your MP signed this EDM?  You can see all signatures here.  
The following explanation is from ME Research UK
 
Parliamentary Motion on ME/CFS Delivery Plan limitations
28 October 2025
Now open for Honourable Members to sign, and initiated by Tom Morrison MP, is an Early Day Motion (EDM 1852) which brings to Westminster the limitations of the ME/CFS Delivery Plan and, in particular its research points. These points largely mirrow the weaknesses ME Research UK voiced upon publication of the Plan in July 2025.
 
The Early Day Motion (EDM) is now open to MPs to sign. Officially these motions are submitted for debate in the House of Commons but for which no date has been fixed. As no specific parliamentary time is allocated to EDMs very few are debated but place on record the views of individual MPs and they can demonstrate the level of parliamentary support for a particular cause or point of view.

"That this House welcomes the publication by the Department of Health and Social Care of the Final Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and recognises the work of officials and the ME community in shaping the plan; notes with concern, that the plan falls short of delivering the meaningful change urgently needed by people with ME/CFS; further notes the absence of a strategic approach to ME research, including the omission of proposals for a dedicated ME research hub; expresses concern that much of the new funding cited, such as for the PRIME (Patients, Researchers and Industry for Myalgic Encephalomyelitis) project, was already secured through existing competitive processes; highlights the lack of sufficient accountability for implementing services and updating medical education in line with the NICE Guidelines on ME; regrets the limited attention given to severe ME and the absence of guarantees on specialist care provision; and calls on the Government to ensure robust accountability for its implementation, and provide the resources necessary to improve care, support and outcomes for people living with ME/CFS."
 
 
List of Herefordshire and Worcestershire MPs with email/websites is
also available for you on the Social Group's website for your convenience.

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

World ME Alliance - World ME Day 2025.
ME Awareness Week 2025, 12 - 18 May.
12 May has been ME/CFS Day since 1992,.
 
ME Research UK (MERUK) announce US states to mark International ME Awareness Day
13 February 2025
Since 1992 12th May has been recognised as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day.
On this important day, organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases by raising public awareness.  In fact, 12th May is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). The CIND illnesses include Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).
 
Two US states have legislated this year to mark the date.  The New York State Senate has passed a resolution marking “the 33rd Anniversary of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in the State of New York”.  In addition, the State of Alaska has passed “An Act establishing May 12 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Day of Recognition” and that 12th May may be observed by suitable observances and exercises by civic groups and the public.
 
 
World ME Alliance
Country-by-Country Highlights for World ME Day 2025.
Post author:World ME Alliance
Post published:8 May 2025
Around the world, individuals, organisations and communities are coming together in to mark World ME Day 2025.  Below is a breakdown of national events and campaigns happening by country, highlighting the wide range of efforts to raise awareness, push for better care, and demand action for people living with Myalgic Encephalomyelitis (ME).  From media takeovers to political action, here are just some of the national activities taking place in 2025.  Article includes information from - France, Belgium, New Zealand, Portugal, United Kingdom, Scotland, Northern Ireland, Germany, Australia, United States, Mexico, Brazil, Czechia.
 
 
World ME Alliance explain Six Myths World ME Day 2025: Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME)  and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME).  Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating illness that affects millions of people worldwide. However, persistent myths and misunderstandings hinder its recognition and treatment.  This year we are calling on you to help debunk six of the most common myths about ME and share the medical facts everyone should know.
 
1. Myth: ME is a mental health condition.
     Fact: ME is a biological illness that disrupts the metabolism and impairs the brain, immune system and autonomic nervous system.
It often starts after an infection, common flu or COVID. Millions of people worldwide have ME, with about 75% of them being women. Many struggle with daily activities, up to 75% cannot work or attend school, and at least 25% of patients are so severely affected that they are housebound or bedridden.
 
2.  Myth: ME is just about feeling tired
     Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) - an extreme worsening of symptoms after even minor physical or mental exertion.
This can trigger a “crash” lasting for days or longer, making even basic activities difficult or impossible. Attempting to push through can significantly worsen symptoms and may lead to long-term deterioration.  For those with severe ME, even minimal exertion -such as sitting up, light conversation, or sensory stimuli like sound and light - can be intolerable, leaving them extremely disabled and dependent on full-time care.
 
3.  Myth: You can exercise your way to recovery from ME.
     Fact:  Exercise can be dangerous for people with ME.
Unlike other chronic conditions where exercise can help, structured exercise programs often make ME symptoms worse as patients end up pushing themselves too far.
In the past, graded exercise therapy (GET) was recommended, but after reviewing the evidence, health organisations like NICE in the UK and the CDC in the US have warned against it. Instead, people with ME are encouraged to pace themselves—balancing activity and rest—to avoid deterioration.
 
4.  Myth: Only certain groups of people can develop ME. 
     Fact: ME affects people of all races, genders, ages, and socioeconomic backgrounds. 
The misconception that ME primarily affects certain groups stems from disparities in diagnosis and healthcare access. While about 75% of those affected are women, ME can affect anyone, regardless of age, gender, race or income. In addition, marginalized communities face more challenges getting diagnosed and treated due to bias in the medical system and lack of awareness. 
 
5. Myth: Long COVID is entirely different from ME.
     Fact: Many Long COVID patients have symptoms that match ME.
Since the COVID-19 pandemic, researchers have found that a large number of people with persistent Long COVID meet the diagnostic criteria for ME. Many experience PEM, the core symptom of ME. Studies highlight the biological similarities between the two diseases, reinforcing the need for integrated research and clinical approaches for these two conditions as well as other post-infectious syndromes.
 
6. Myth: Doctors cannot help people with ME.
     Fact:  Doctors can help people manage ME symptoms.
While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing to prevent PEM. Treating co-existing conditions and providing medications to address sleep disturbances, pain, and cardiac and neurological issues can offer significant relief. Offering at-home visits, online consultations and palliative care can make a big difference to someone suffering from Severe ME.
 
 
ME Research UK announce -
Scottish Parliament Motion to mark International ME Awareness Day
23 April 2025
That the Parliament marks International ME Awareness Day 2025 on 12 May and commends ME Research UK on the occasion of 25 years since its foundation; notes that the charity is dedicated to commissioning and funding biomedical research into the causes, consequences and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/ CFS); believes that the disease, which affects at least 20,000 people in Scotland, is often misunderstood, mis-diagnosed and under-diagnosed, and is grievously under-researched; understands that the Perth-based charity has invested over £4.5 million in research with 68 research projects globally, four PhD-level projects and a Fellowship; further understands that, in terms of projects, the Perth-based charity is the largest funder of ME/ CFS outwith North America, that it presently funds projects in Australia, France, Germany, the Netherlands, Sweden, USA and the UK, and is funded entirely by individual donations, and extends its thanks for the work of ME Research UK in informing, influencing and investing in ME research globally.
Liz Smith, Mid Scotland and Fife, Date lodged: Tuesday, 22 April 2025; 
Motion reference: S6M-17226
 
To raise awareness of ME among politicians at Holyrood ahead of International ME Awareness Day, Liz Smith MSP (who represents ME Research UK’s Perth base as regional list MSP for Mid Scotland and Fife), has lodged a Motion at the Scottish Parliament. The Motion also marks ME Research UK’s 25th anniversary by highlighting our work in the past quarter century.
Most Motions submitted by MSPs raise awareness of an issue or recognise a group, business or individual with other non-Cabinet MSPs able to endorse to show their agreement and support and although of no legislative effect the Motion remains on Parliament’s website. Of the 129 MSPs only 104 are able to support such Motions.
 
 
ME Association (MEA) announce -
ME Awareness Week 2025, 12th - 18th May
ME Awareness Week is observed every year in May surrounding International ME/CFS Awareness Day (also known as World ME Day) on 12th May.   This year, we are focusing on information surrounding the symptom management of ME/CFS. Please keep any eye out on social media for our posts!
 
Awareness helps in several ways: it educates the public and healthcare providers, reducing stigma and promoting early diagnosis; it drives funding for research into causes and treatments, as there’s currently no cure; and it fosters empathy and support for those living with ME, who often feel isolated due to the condition’s impact on their daily lives. By shining a light on ME, we can improve quality of life for millions and push for better medical and social resources.
 
 
The 25% ME Group share
M.E awareness 2025
Awareness helps in several ways: it educates the public and healthcare providers, reducing stigma and promoting early diagnosis; it drives funding for research into causes and treatments, as there’s currently no cure; and it fosters empathy and support for those living with ME, who often feel isolated due to the condition’s impact on their daily lives.  By shining a light on ME, we can improve quality of life for millions and push for better medical and social resources.
 
Raising awareness for Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS), is vital because it’s a misunderstood and often invisible illness.  ME is a severe, chronic condition that impacts multiple body systems, leading to extreme fatigue, pain, brain fog, and post-exertional malaise - where even small activities worsen symptoms.
 
 
Action for ME give details of the Joint APPG meeting.
Joint ME and Long Covid APPG meeting agenda - May 2025
24 April 2025
The first joint meeting between the APPG on ME and the APPG on Long Covid is taking place on Wednesday 14 May, from 5pm - 7pm.
 
Ensure you MP is aware of this important joint meeting during ME Awareness Week.
Link for further details at.

•  25% M.E. Group  •  Action for ME  •  A.P.P.G   •  M.E. Association  •  MERUK  •  MP   •  Parliament U.K. 

All Worcestershire MPs are invited. 
All MPs are welcome to next APPG (All Party Parliamentary Group) on ME meeting.
Herefordshire and Worcestershire Post Viral Fatigue Service.
 
The ME Association (MEA) announce -
Ask your MP to join the joint meeting of the APPG on ME and APPG on Long Covid
April 24, 2025
The first joint meeting between the All Party Parliamentary Group (APPG) on ME and the APPG on Long Covid is taking place on Wednesday 14 May, from 5pm - 7pm.
 
The agenda will include:

• Similarities and differences between ME and Long Covid - Prof David Strain, Health Research Advisor, Gov
• Where are we now - ME research & DecodeME results - Prof Chris Ponting, Edinburgh University
• Where are we now - LC research & React results - Prof Danny Altmann, Imperial College
• Dr Binita Kane, Manchester University Foundation Trust
• Ensuring effective working between both APPGs

 
Next steps - Jo Platt
A Q&A session will be held following each external speaker.
Detailed minutes will be shared following the meeting.
Can my local MP attend?
Yes! You can invite your local MP to attend using our template letter, available on the APPG on ME's website.
Further information
Information: MP Jo Platt chair of APPG on ME and the APPG on Long Covid
 
 
Action for ME (AfME) announce -
Joint ME and Long Covid APPG meeting agenda - May 2025
24 April 2025
The first joint meeting between the APPG on ME and the APPG on Long Covid is taking place on Wednesday 14 May, from 5pm - 7pm.
 
The agenda will include:

• Similarities and differences between ME and Long Covid - Prof David Strain, Health Research Advisor, Gov
• Where are we now - ME research & DecodeME results - Prof Chris Ponting, Edinburgh University
• Where are we now - LC research & React results - Prof Danny Altmann, Imperial College
• Dr Binita Kane, Manchester University Foundation Trust
• Ensuring effective working between both APPGs
• Next steps - Jo Platt

 
A Q&A session will be held following each external speaker.
Detailed minutes will be shared following the meeting.
 
Can my local MP attend the APPG meeting?
Yes! You can invite your local MP to attend using our template letter, available on the APPG on ME's website.
 
 
Local Recent Announcements
Future NHS Services for people living with post viral syndromes in Worcestershire and Herefordshire (Update).
11/4/2025
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and PCS (Post Covid) Services.
Herefordshire and Worcestershire Post Viral Fatigue Service.
Our links  page includes a list of Worcestershire MPs with email/websites).

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

Part 4.  Worcestershire County Council SEND, TYMES TRUST, and All Party Parliamentary Group (APPG) on SEND
 
Welcome to SENDIASS Herefordshire and Worcestershire
Special Educational Needs and Disabilities (SEND) Information, Advice and Support Service (IASS) covering Herefordshire and Worcestershire.
 
Listed under ME/Chronic Fatigue Syndrome   in the Worcestershire County Council SENDIASS support *A - Z*
Information

• Website: The ME Association
• Website: Tymes Trust

 
 
TYMES TRUST’s four page pdf
Response to the DoHSC Consultation Interim Delivery Plan on ME/CFS, begins with TYMES Trust appreciates the time and dedication of everyone contributing to and compiling the DHSC My full reality: the interim delivery plan on ME/CFS.  For too long this devastating illness has been shrouded in controversy; far too many Children, Young People and their Parent/Carers (and some professionals) have been harmed by ignorance and misunderstanding of the illness, resulting in inappropriate medical care, social care, education provision, child protection proceedings and professional gaslighting.
 
The recent changes within the NICE guidelines, and this UK Department of Health and Social Care Interim Delivery Plan on ME gives us some long-awaited hope; however, we have some reservations and comments.  Overall, the plan is positive, and the crucial task of re-education (if implemented appropriately) will certainly support system improvement and support professionals to deliver individualised, quality, care and understanding to those living with ME.
The needs of children and young people are different to those of adults. Ideally, discussions and planning for children and young people should be progressed as an independent section within the Interim Plan.  The changes within the plan need to be implemented with a sense of urgency to avoid further harm and subsequent declining health for our children and young people as ME has a huge negative impact at such a vulnerable stage of life.
 
TYMES TRUST also list their recommendations, including the fact that “a firm diagnosis of ME is needed as early as possible to ensure protection from disbelief and needless pressure from education and Social Services.”  TYMES Trust concurs with the comments and responses of their fellow Forward ME members including The ME Association, 25% Group, BRAME , ME Research UK.
 
 
All Party Parliamentary Group on SEND.  The Inaugural meeting of MPs to re-establish the All Party Parliamentary Group (APPG) on special educational needs and disabilities (SEND) took place on Wednesday 16 October 2024. It was standing-room only due to the level of interest from MPs and a long list of others who couldn’t attend but wish to be members of the group.
 
We are pleased to confirm that NAHT will again be providing the secretariat for the group. Olivia Blake MP was duly re-elected to chair of the group, along with Greg Stafford MP, Shockat Adam MP and Jen Craft MP, who were elected as vice-chairs,with a full list of 42 MP members.
The meeting discussed the previous work of the group, focusing on the importance of early intervention and had a brief discussion about next steps. The meeting was cut short by the division bell during a busy day in parliament.  The group will now be re-registered as an APPG and we will be arranging next steps and will keep you all up to date with progress and details of future meetings.  The officers of the group are now as follows:

APPG officers
Olivia Blake, Labour, Sheffield Hallam
Greg Stafford, Conservative, Farnham and Bordon
Shockat Adam, Independent, Leicester South
Jen Craft, Labour, Thurrock
 
The membership of the group are listed with this announcement, and include Chris Bloore, MP Redditch.

• You can follow the APPG for SEND on X via @appg_send
• To join the APPG for SEND mailing list, please click here
• If you or your organisation would like to speak at an upcoming meeting of the APPG for SEND, please express your interest here

•  A.P.P.G  •  Children  •  Forward ME  •  Government U.K.  •  M.E. Association  •  MP  •  N.I.C.E.  •  Tymes Trust  •  Worcestershire County Council  

Part 3.  Inaugural Meeting of the All Party Parliamentary Group (APPG) on M.E.
 
 
Action for ME (AfME) report following the recent APPG on ME meeting 
APPG on ME is now formally registered
December 20, 2024
 
On Tuesday evening, the inaugural meeting of the All-Party Parliamentary Group was held and we're pleased to announce that the APPG on ME is now formally registered!.  Jo Platt MP was unanimously confirmed in appointment as Chair, by the Group.
Following this, a discussion was held on the APPG's purpose and to suggest priorities for the upcoming year, which included relaunching the inquiry into severe ME that the previous APPG was unable to complete, due to the General Election.  Members will now need to consider the suggestions and identify next steps.
 
Speaking following the meeting, Action for ME Chief Executive, Sonya Chowdhury, said:
"I want to start with a thank you to all those who took the time and energy to write to their local MP, encouraging to attend the meeting.  Thank you also to all the MPs who have pledged their support to people affected by ME by being a part of this APPG and a special thank you to Jo, for Chairing this group.
I'm really excited by the potential this Group holds to create real change for people with ME and very much look forward to working with them moving forwards."
 
The full minutes can be viewed, alongside a meeting summary, on the APPG's website.
Action for ME provides the Secretariat to the APPG; this is joint funded by the ME Association
 
 
Extract from ME Research UK (MERUK)’s report following the recent APPG on ME meeting.
New All Party Parliamentary Group on ME formed 24 December 2024
 
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament and the House of Lords seeking to improve health, social care, education and employment opportunities for people with ME and accelerate biomedical research into the cause and treatment of ME.
draft Minutes of APPG 17 Dec 2024
 
Forming an All Party Parliamentary Group is not simple but is highly beneficial to a cause to have a forum where legislators and interested parties can meet and act within the seat of government.  On 17th December 2024 a new APPG on ME held its inaugural meeting and was subsequently entered on the Register of APPGs.  MP Jo Platt was proposed and confirmed as Chair - office bearers being Tessa Munt MP, Lord Offord of Gavel, and Debbie Abrahams MP and members being MPs Bradley Thomas, Louise Jones, Luke Charters, Rachel Maskell and Paul Waugh together with a member of the House of Lords - Baroness Scott of Needham Market.
 
The MERUK report also gives “Areas of action as recorded in the draft Minutes encompass”.
 
•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MERUK  •  N.H.S.

Part 2.  House of Commons Health and Social Care Debate, and Parliamentary written response.
 
 
The ME Association (MEA) report from the House of Commons Debate: Health and Social Care
January 10, 2025
Below is a response to a question from MP Jo Platt (Labour/Co-operative, Leigh and Atherton), newly appointed chair of the All Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME).
 
Andrew Gwynne, The Parliamentary Under-Secretary for Health and Social Care
My hon. Friend raises a really important point. NHS England is due to complete a stocktake of long covid services throughout England at the end of this month. That will provide an accurate in-depth overview of not only long covid services but ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome - services.
The stocktake will provide a comprehensive and accurate national picture, identify key challenges and make strategic recommendations for future service improvement, development and assurance.
 
MEA’s Comment
We hope that this ‘stocktake' and strategic review of Long Covid and ME/CFS specialist service provision in England, will complement the Final Delivery Plan on ME/CFS and the work we have been doing with ICBs and local services to try and ensure sufficient funding is available to make the improvements which are necessary to fully comply with the NICE Guideline recommendations.
 
 
Last month Andrew Gwynne, The Parliamentary Under-Secretary for Health and Social Care, mentioned the Final Delivery Plan on ME/CFS when he gave a written response to Tessa Munt MP.
 
Answered on 19 December 2024
We are committed to improving the care and support for people with myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome. We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.
 
We published a summary report of the responses to the 2023 consultation on the interim delivery plan on 19 December 2024. The responses to that consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan, which we aim to publish by the end of March 2025. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
 
The report is available at the following link:
Improving the experiences of people with ME/CFS: consultation outcome

•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MERUK  •  N.H.S.

Consultation Released, Health & Social Care Debate and APPG on M.E.
 
Part 1.  Interim Delivery Plan on ME/CFS Consultation Released.
 
The ME Research UK (MERUK) fully explain Details of Consultation on Interim Delivery Plan released
24 December 2024
October 2023 saw the conclusion of the consultation phase on the UK Department of Health and Social Care (DHSC) ‘My full reality: the interim delivery plan on ME/CFS‘ . ME Research UK commented fully on the provisions as they relate to research and the limitations the charity saw in the plans.
 
3,338 responses were received -

• 47 were from organisations – including the views of ME Research UK
• 3,113 were from individuals sharing their personal views
• 53 were from individuals responding on behalf of someone else
• 125 were from individuals sharing their professional views

 
Such were the number of responses that the DHSC has taken over a year to analyse the results but these were released online on 19 December 2024 as ‘Improving the experiences of people with ME/CFS: consultation outcome’ and covers the areas of the draft Delivery Plan namely

• research
• attitudes and education
• living with ME/CFS
• language used in relation to ME/CFS

 
The MERUK’s detailed article also gave information on -
Responses relevant to Research;  Funding;  Strategy  - including calls for a centralised database of research and a centre for research excellence, as proposed in the 2022 All-Party Parliamentary Group report;  Research capacity;  Research scope;  Patient involvement;  Actions.
 
MERUK Conclusions
 
ME Research UK is pleased to see that so many of the threads of our response have been echoed by other respondees and feature in the list of most commented and supported. The stronger the calls for focused and well-funded biomedical research into the causes, consequences and treatment of ME/CFS the more likely it is that government will need to re-think, re-focus and ACT.
 
That ring-fenced funding, prioritisation of biomedical research, and need to encourage and retain researchers in the field has been taken up chimes with the charity’s step-by-step approach.
Research into ME/CFS cannot be left to patients to fund. Attitudes within central funders must change and only the government can dictate and demand that this happens. If the results of the consultation are translated into a strengthened and improved Delivery Plan then real change may occur but we must all await publication of the final Delivery Plan due in March 2025. As the government web page says “this document summarises the consultation responses only and is not intended to announce new government actions on ME/CFS.’
That being said, although the Key Actions are to be welcomed the Six actions proposed in the IDP appear weak and unlikely to produce the transformational change needed to achieve the research goals. These actions must be strengthened to align with the clear demands of the responses and to give the outcomes outlined in the Key Actions a chance to be realised.
 
 
The ME Association announced -
The Department of Health and Social Care (DHSC) publishes the outcome of the consultation process for the DHSC Delivery Plan on ME/CFS,
December 20, 2024
Dr Charles Shepherd of the The ME Association states:
This document summarises the consultation responses.  Please note that it is not intended to be an announcement of any new government actions on ME/CFS.
The consultation responses, alongside continued stakeholder engagement, will inform the development of the final Delivery Plan on ME/CFS.  The DHSC aims to publish the final version of the Delivery Plan by the end of March 2025.  The final Delivery Plan will be co-produced with stakeholders, through the ME/CFS Task and Finish Group.
According to the DHSC this will involve careful consideration of the consultation responses and the assessment of the feasibility and viability of the proposed actions.  There is a lot to read here and I have only just seen this ministerial announcement - so I will comment further when I have had time to go through it properly.
Dr Charles Shepherd, Hon Medical Adviser MEA

•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MERUK  •  N.H.S.

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. 

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