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. 

Postural Tachycardia Syndrome debate (link to The ME Association’s leaflet below)

Postural Tachycardia Syndrome Hansard text debate available to download
Volume 773: debated on Tuesday 14 October 2025
 
ME Research UK give a detailed explanation on this recent debate
Westminster debate on PoTS
21 October 2025
Labour MP for Lancaster and  Wyre, Cat Smith, led the Westminster debate on postural orthostatic tachycardia syndrome (PoTS) emphasising that PoTS is not a rare disease, yet individuals with PoTS are “falling through the cracks” of a healthcare system unprepared to recognise or support them. Drawing on her own experience and those of constituents across the UK, she called for urgent reform in diagnosis, treatment, and care pathways for people with PoTS. Minister Ashley Dalton responded during the session that lasted around half an hour.
Overview of Minister Ashley Dalton’s response, including  -
1. Diagnostic delays and disbelief
2. Shortage of expertise and overwhelmed services
3. Systemic and structural failings
4. Gender health gap
5. Calls for government action
 
At the beginning of Cat Smith’s speech she took several interventions from MPs, representing constituents across the UK, who also highlighted how important raising the issue was.
 
Key themes from MP Interventions
1. Diagnosis delays and misdiagnosis
2. Need for national clinical guidelines and care pathways
3. Awareness and training for medical professionals
4. Impact on individuals and families
 
Overview of Minister Ashley Dalton’s response
Minister for Public Health and Prevention, Ashley Dalton, began by congratulating Cat Smith MP for “bringing this very important issue forward” and praised her passionate advocacy stemming from personal experience.
 
What could this mean for patients and campaigners?
The Minister’s response clearly recognised the daily struggles of people with PoTS and the systemic barriers they face. However, it did not announce any new funding, policy changes, or immediate interventions for overstretched clinics. Responsibility was largely deferred to local ICBs and future research outcomes.
In short, the response provided welcome recognition but limited action - a positive start in tone, but not yet the decisive, coordinated strategy that advocates seem to be asking for.
 
See the ME Research UK detailed explanation on this recent Westminster debate on PoTS
21 October 2025
 
 
The ME Association’s Postural Orthostatic Tachycardia Syndrome (PoTS) downloadable leaflet.
We explain PoTS, why it affects some people with ME/CFS (and Long Covid) and how it can be diagnosed and treated. You might also like to review the NICE Guideline on ME/CFS.
 
 
MEA report PoTS and long Covid including information for people with ME/CFS
December 2021
Dr Charles Shepherd, Honorary Medical for the ME Association comments on the following paper; Autonomic dysfunction post-acute COVID-19 infection (Desai et al, Nov 2021)
This new paper from an American research group provides further evidence of dysfunction of the autonomic nervous system (ANS) in Long Covid -  in particular, the presence of Postural Orthostatic Tachycardia Syndrome (PoTS) in a significant proportion of people with Long Covid
 
Much of the information on management is also applicable to PoTS where it occurs in ME/CFS. 
ANS dysfunction is very common in ME/CFS and we have been pointing out the important overlap involving this symptom between ME/CFS and Long Covid for well over a year.
The MEA information leaflet on PoTS covers all aspects of PoTS in relation to ME/CFS:
Postural Orthostatic Tachycardia Syndrome (PoTS)
PoTS UK is a medical charity that can provide more detailed information and has a list of NHS specialists:  PoTS UK Website
Plus Dr Shepherd’s thoughts.


•  Coronavirus (COVID 19)  •  Government U.K.  •  M.E. Association  •  MERUK  •  MP  •  N.I.C.E.  •  Parliament U.K. •  Post COVID Syndrome (Long COVID)  •  Research 

Please join us, at our Afternoon Café Meeting on Wednesday, 12 November, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
All people with M.E., CFS, FMS, Long Covid, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us whenever it suits you.
 
Future Afternoon Café Meetings will also be on the 2nd Wednesday of each month, from 2.00 - 3.30 pm, at the Next Café.  Further information with all 2025 dates listed is available on our Meetings page.

Unfortunately, the Worcestershire meetings are currently only being held in Worcester, but hopefully they will be at further locations in the future.  Venues for previous lunches and afternoon social gatherings are listed on the Worcestershire ME Social Group website, giving an idea of locations where we have previously met.  To have meetings in further locations we need people who are able to attend from the beginning of every meeting.

•  Local News  •  Meetings  •  Worcestershire  •  Worcestershire M.E. Social Group