ME Action Network UK's Capain for Very Severe ME/CFS Services
I slightly edited one of the charity's template emails to MPs to make it a bit more spammable and am posting it below in case it helps anyone.
Please note: I hate the term CFS with a passion but have added it in for my own reasons- others are obviously welcome to do as they think best!
Hi there, I'd really appreciate if you could use the email template below to lobby your MP on people with Very Severe ME/CFS. If you have a smartphone, it should take no more than a few minutes! Many thanks to those that have time. X
Subject: Request for Support Regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Body: Dear [MP's name],My name is _____ and I am one of your constituents. My postcode is [insert postcode]. I am writing to draw your attention to this critical matter (. / and on behalf of my (whatever) who has had ME/CFS for _ years (/many years). / and I have had ME/ CFS for _ years].
Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a complex, debilitating, and chronic disease affecting over 700,000 people in the UK. ME causes profound neurological, immunological and metabolic dysfunction.In the UK there is no NHS service for the very sickest people with ME/CFS.
It is estimated that up to 175,000 people are suffering at home or in hospital, bedbound, tube fed and paralysed, with no specialist service to call on. The DHSC ME/CFS Delivery Plan promised to start the process of commissioning a service for the very severely ill ME/CFS sufferer in England.
The start of this process has now been pushed back until April 2027 at the earliest while the very frail are left with no service, no specialists and nowhere to go.
[If possible add personal or local information that will help illustrate the issues you are concerned about. Make it as personal as you are comfortable with. Sufferers sharing this with friends and fam might consider pre-writing a couple of sentences about themselves and their experiences that their associates can choose to include or perhaps delete this section to avoid people getting stuck on this bit.]
I am not able/ too ill to come to your surgery to discuss this matter in person so I ask that you view the short video attached here (https://youtu.be/YoCT_K66Ul0?is=h9ffQa7BqjJwduVZ ) and respond to me by email (/other.)
(My ( ‘s) situation/The video linked above) illustrates how urgent the case for healthcare is for the very sickest people with ME/CFS who have the least help. The decision to set up this service lies with the Secretary of State for Health and Social Care. Please lobby him and represent how urgent the situation is for those of us who are too ill to campaign on our own behalf.
(If you live in England you can ask your MP to contact your local IntegratedCare Board:)
Setting up a specialised service for the very severely ill with ME/CFS will take years. You can help relieve suffering now by lobbying our Integrated Care Board (ICB) and ask for the immediate setting up of a virtual ward system and inclusion in their Joint Forward Plan: https://www.england.nhs.uk/contact-us/about-nhs-services/contact-your-local-integrated-care-board-icb/
A virtual ward allows patients to receive acute, hospital-level care in their own homes, care homes, or hospices rather than a hospital bed. It uses technology—such as apps, wearables, and monitoring devices—combined with regular, multidisciplinary team visits (nurses, doctors, therapists) to monitor conditions, prescribe medication, and provide treatments like oxygen and fluids.
Thank you for your attention,
[Your Name]
[Your Contact Information - contact phone number, address with postcode]
