Lobbying your Members of the Senedd (MSs) Aug / Sept 2025
We were really encouraged by the support we had from the many Senedd Members (MSs) who visited the Severe ME Difrifol Cymru stall at Y Farchnad (The Marketplace) in the Senedd on 15th July.
MSs will soon be returning to the Senedd after their long Summer Recess. Now we need them to make their support official – by actually signing up to give their backing to Adam Price’s Motion for a debate about Severe/Very Severe ME in Wales: https://record.senedd.wales/Motion/8884.
Y Farchnad was a fantastic start. But now, WE NEED YOU!
If you live in Wales and would like to see this debate happen in the Senedd, then now is the time to help us. Every person in Wales is represented by one Constituency MS and several Regional MSs. We need as many people as possible to contact all of their MSs to ensure we get this debate!
Diolch. Thank you.
Current Supporters
The following MSs have signed up to say they will support the motion:
Mabon ap Gwynfor (Dwyfor Meirionydd)
Rhun ap Iorwerth (Ynys Môn)
Mike Hedges (Swansea East)
Adam Price (Carmarthen East & Dinefwr)
Llyr Gruffydd (N Wales)
Mark Isherwood (N Wales)
Rhys ab Owen (S Wales Central)
Joel James (S Wales Central)
Peredur Owen Griffiths (S Wales East)
Altaf Hussain (S Wales West)
Sioned Williams (S Wales West)
Luke Fletcher (S Wales West)
Cefin Campbell (Mid & W Wales)
Jane Dodds (Mid & W Wales)
How To Help
Find out who your local Constituency and Regional MSs are via this link: https://senedd.wales/find-a-member-of-the-senedd/ - just type in your postcode.
Check the list above to see whether your MSs has already signed up to support Motion 8884.
Write to your Constituency and Regional MSs, asking them to sign up formally in support of Motion 8884 on provision for people with Severe and Very Severe ME. Use / adapt / personalise the template below if that’s helpful.
To give your MSs some more info, you could copy and paste the briefing document that is at the bottom of this page.
Please email us at SevereME.Cymru@gmail.com to let us know you’ve written / had a response.
Consider asking to meet your MS face-to-face if you are able to. We’ve found that these meetings are very effective in getting MSs’ support.
Templates
Template 1: email / letter for an MS and has not yet signed to support Motion 8884
Dear (MS’ name)
I am writing, as your constituent, to ask you to give your formal support to Adam Price’s Motion 8884 for a Senedd debate on Severe and Very Severe ME: https://record.senedd.wales/Motion/8884.
(Tell your MS something about your lived experience of ME. Briefly mention if you have had difficulties getting diagnosis, treatments, care etc, if appropriate, and why it’s important that the Welsh Government makes the changes outlined in the Motion.)
Historically, the needs of people with ME have been neglected, and those with the most severe needs have received the least provision of all. It is essential that the Welsh Government ensures that the Adferiad funded services are developed to meet the needs of patients at all severity levels.
It would mean a lot to me as one of your constituents who (has ME/severe ME) / (is a carer for….who has ME) if you would formally support the Motion, and, when the debate happens, attend / participate in it.
(I would be happy for you to make use of my story if you were to participate in the debate)
Thank you.
Yours sincerely
(Your name)
(Your address – required by Senedd rules)
(Telephone number - also required)
(N.B. Senedd rules require you to include both your address and phone number)
Template 2: email / letter for an MS who has already signed up to support Motion 8884
Dear (MS’ name)
Thank you for supporting Adam Price’s Motion for a debate in the Senedd about Severe and Very Severe ME.
As your constituent and as a person with (Severe) ME [or as a carer for… who has (Severe) ME], this really means a lot to me.
(Tell your MS something about your lived experience of ME. Briefly mention if you have had difficulties getting diagnosis, treatments, care etc, if appropriate, and why it’s important that the Welsh Government makes the changes outlined in the Motion.)
If the Motion is selected for a debate, I’d be very grateful if you could try to attend / participate.
(I would be happy for you to use my story for this purpose)
Thank you.
Yours sincerely
(Your name)
(Your address – required by Senedd rules)
(Telephone number - also required)
(N.B. Senedd rules require you to include both your address and phone number)
Severe ME Difrifol Cymru – Briefing Document: Motion 8884
Both the NICE guidelines and the Welsh Government recognise ME as a complex, chronic, multi-system condition which can have a profound impact on a person’s life, economically, socially and emotionally. There is also a broader impact on patients’ families, who often have to act as carers for their loved ones.
People with severe ME are unable to do any activity for themselves or can carry out only minimal daily tasks, such as washing their face or cleaning their teeth. They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house, or suffer a severe and prolonged after-effect if they do so. They are often extremely sensitive to light and sound. Many are bedridden. (1)
People with very severe ME are confined to bed and dependent on care. They need help with personal hygiene and eating. They are very sensitive to sensory stimuli. Some may not be able to swallow and may need to be tube fed. (2)
Based on extrapolated data from the ONS, WG statements and latest research, estimates put the number of people with ME in Wales at approx 60,000 (including the 50% of Long Covid patients who meet NICE ME/CFS clinical criteria (3)). 25% of those, about 15,000, are thought to have severe or very severe ME. (4)
In 2023 the Welsh Government gave health boards an additional £3m from the Adferiad budget to extend existing support for Long Covid (£5m) to those with ME (and Fibromyalgia). (5)
However, these therapist-led services are generally not reaching those most severely affected, who continue to receive the least care from the NHS. Since they are usually too ill to visit the GP surgery or to attend outpatient appointments, they remain invisible: out of sight and out of mind.
With no national strategy and no NHS Wales quality statement, provision of services varies according to each health board, and there are concerns that the most severely ill are not being taken into account.
There is no ME specialist or consultant-level medic anywhere in Wales to whom the Adferiad services or GPs can turn for advice in severe cases.
Last year a Prevention of Future Deaths Report (6) was issued by the coroner after the inquest into the death of Maeve Boothby O’Neill in 2021 at the age of 27. Maeve had very severe ME and had been admitted on three occasions to the Royal Devon and Exeter Hospital, where, in the absence of specialist knowledge or provision, there was no guidance on how best to treat her. The Report raised concerns about the lack of understanding, treatments, research and appropriate provision within the NHS for patients with severe and very severe ME.
Since health is devolved, the Welsh Cabinet Secretary for Health and Social Care is not legally obliged to respond to the Report, but if the Welsh Government is committed, as it claims, to meeting the needs of people with ME, this must mean at all levels of severity.
The Adferiad services must make appropriate provision for the 25% of ME patients who are severe (mainly housebound) and very severe (bed bound), as well as the mildly/moderately affected.
1. NICE Guideline on ME/CFS NG206 (2021) Severity Levels p.8
2. NICE Guideline on ME/CFS NG206 (2021) Severity Levels p.8
3. https://meassociation.org.uk/medical-matters/items/prevalence-population-estimates-mecfs/
4. https://worldmealliance.org/what-is-me/severe-me/
5. https://www.gov.wales/funding-boost-open-long-covid-services-people-long-term-conditions