Jonathan Edwards
Senior Member (Voting Rights)
This is getting frustrating. BAACME do not provide any sort of service as far as we can see, so why hold discussions with them?
UK House of Lords/ House of Commons - relevant people and questions
- Thread starter Sly Saint
- Start date
This is getting frustrating. BAACME do not provide any sort of service as far as we can see, so why hold discussions with them?
Lou B Lou
Senior Member (Voting Rights)
We don't know who prompted Sian Berry's Question, who briefed her, and probably never will. However Sian Berry's position as Patron of the Sussex ME/CFS Society, together with the Society Chair's frequent lauding of BACME, suggests the prompting could have come from The Sussex ME/CFS Society.
British Association for Clinicians in ME/CFS (BACME) - Sussex & Kent ME/CFS Society
BACME provides information to support clinicians in their work with people with ME/CFS. These management guides and supporting documentation are posted at the Resources section of their website. You can download any of these guidelines that you feel may be welcomed by your GP or any professional...
measussex.org.uk
BACME provides information to support clinicians in their work with people with ME/CFS. These management guides and supporting documentation are posted at the Resources section of their website.
You can download any of these guidelines that you feel may be welcomed by your GP or any professional who may be trying to help you.
https://bacme.info/library/management_guides/
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Binkie4
Senior Member (Voting Rights)
Thank you @MeSci for copies of the correspondence and for responding so thoroughly to Caroline Lucas.
I hope that Sian Berry learns of the concerns of many in the ME community about the Sussex and Kent ME/CFS society. If we have a Brighton Pavillion constituency member, hopefully s/he might consider writing to her. She looks very secure however with an impressive majority.
"In the 2024 general election, Berry was elected Member of Parliament (MP) for Brighton Pavilion with 28,809 votes (54.8%) and a majority of 14,290 over the second-placed Labour candidate." ( Wiki)
The other Sussex society ReMEmber no longer exists.
Janice and Bill ( Kent) have stepped down as founder director and secretary of reMEmber and, there being no one available to take over from them, this Mid Sussex-based ME/CFS group has had to close. (MEAssociation).
I hope that Sian Berry learns of the concerns of many in the ME community about the Sussex and Kent ME/CFS society. If we have a Brighton Pavillion constituency member, hopefully s/he might consider writing to her. She looks very secure however with an impressive majority.
"In the 2024 general election, Berry was elected Member of Parliament (MP) for Brighton Pavilion with 28,809 votes (54.8%) and a majority of 14,290 over the second-placed Labour candidate." ( Wiki)
The other Sussex society ReMEmber no longer exists.
Janice and Bill ( Kent) have stepped down as founder director and secretary of reMEmber and, there being no one available to take over from them, this Mid Sussex-based ME/CFS group has had to close. (MEAssociation).
Lou B Lou
Senior Member (Voting Rights)
Further to my last post on the BACME related Parliamentary Question from Sian Berry -
We do know that previous Brighton/Hove MPs who were at the time Patrons of the Sussex ME/CFS Society did ask Parliamentary Questions that were very clearly prompted by the Sussex Society. This one about the Lightning Process, which the Sussex Society was actively promoting at the time, via a stall at their Conference for just one example.
This one for example.
2009
Celia Barlow, MP for Hove:
"What guidance his Department has issued to NHS trusts on the use of the lightning process in the treatment of people diagnosed with chronic fatigue syndrome."
Minister of State Dept of Health, Phil Hope:
"The Department has issued no guidance on this process, because we expect decisions on clinical interventions, whether they involve complementary or alternative treatments, to be made by front-line clinicians. In making such decisions, clinicians will take into account evidence for the safety and clinical and cost-effectiveness of the treatment concerned."
Ms Barlow:
"I thank my hon. Friend for his reply. Sussex ME and Chronic Fatigue Society works tirelessly to assist the 6,000 adults and children across the county who suffer from the disease, and several of those people have been contacted about the success of the lightning treatment. Will he assess that treatment, in conjunction with the bodies that he has mentioned, and monitor how successful it is?"
Phil Hope:
"It is not for the Department to undertake that activity. The National Institute for Health and Clinical Excellence, the independent body, issues guidance on the use of such treatments, and that guidance is the subject of a judicial review this week. It is to that independent body that those patients and organisations should make their representations, so that it can make the appropriate recommendations on the use of such treatments."
We do know that previous Brighton/Hove MPs who were at the time Patrons of the Sussex ME/CFS Society did ask Parliamentary Questions that were very clearly prompted by the Sussex Society. This one about the Lightning Process, which the Sussex Society was actively promoting at the time, via a stall at their Conference for just one example.
This one for example.
2009
Celia Barlow, MP for Hove:
"What guidance his Department has issued to NHS trusts on the use of the lightning process in the treatment of people diagnosed with chronic fatigue syndrome."
Minister of State Dept of Health, Phil Hope:
"The Department has issued no guidance on this process, because we expect decisions on clinical interventions, whether they involve complementary or alternative treatments, to be made by front-line clinicians. In making such decisions, clinicians will take into account evidence for the safety and clinical and cost-effectiveness of the treatment concerned."
Ms Barlow:
"I thank my hon. Friend for his reply. Sussex ME and Chronic Fatigue Society works tirelessly to assist the 6,000 adults and children across the county who suffer from the disease, and several of those people have been contacted about the success of the lightning treatment. Will he assess that treatment, in conjunction with the bodies that he has mentioned, and monitor how successful it is?"
Phil Hope:
"It is not for the Department to undertake that activity. The National Institute for Health and Clinical Excellence, the independent body, issues guidance on the use of such treatments, and that guidance is the subject of a judicial review this week. It is to that independent body that those patients and organisations should make their representations, so that it can make the appropriate recommendations on the use of such treatments."
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Tao Fogger
Senior Member (Voting Rights)
Gregory Stafford Opposition Assistant Whip (Commons)
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the current strategic approach to ME/CFS research; and whether his Department plans to develop a coordinated national research strategy for the condition.- Tweet Share
- Hansard source(Citation: HC Deb, 1 December 2025, cW)
Zubir Ahmed The Parliamentary Under-Secretary for Health and Social Care
We have outlined our strategy to support myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), research in the ME/CFS Final Delivery Plan published in July. These steps include a research showcase event, a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical interventions, and the announcement of new funded studies in health and care services, and research infrastructure and capacity-building.We are determined to accelerate progress in the treatment and management of ME/CFS and will continue working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes.
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including ME/CFS. Research funding is available, and applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
Tao Fogger
Senior Member (Voting Rights)
Al Pinkerton Liberal Democrat Spokesperson (Europe)
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of increasing research funding for myalgic encephalomyelitis within NHS services in Surrey Heath Constituency.- Tweet Share
- Hansard source(Citation: HC Deb, 1 December 2025, cW)
Zubir Ahmed The Parliamentary Under-Secretary for Health and Social Care
The Government is determined to accelerate progress in the treatment and management of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), including through addressing barriers to research. We have outlined our approach to supporting ME/CFS research in the ME/CFS Final Delivery Plan, which was published in July. These steps include a research showcase event, a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical interventions, and the announcement of new funded studies in health and care services and research infrastructure and capacity building. We will continue working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes.The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including ME/CFS. Research funding is available, and applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. The NIHR works closely with regional National Health Service trusts through funding research infrastructure and research delivery staff embedded in NHS organisations, ensuring research is translated into practice.
The NIHR and the Medical Research Council have provided over £3.2 million towards the DecodeME study to investigate if there is a genetic component to the condition. Preliminary findings from DecodeME indicate genetic differences in eight areas linked to the immune and nervous systems in people with ME/CFS. This discovery of specific genetic signals may help us understand the biological pathways involved in ME/CFS in the future, informing the development of diagnostics and treatments.
Tao Fogger
Senior Member (Voting Rights)
Al Pinkerton Liberal Democrat Spokesperson (Europe)
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of increasing specialist support services for people with myalgic encephalomyelitis in Surrey Heath Constituency.- Tweet Share
- Hansard source(Citation: HC Deb, 1 December 2025, cW)
Al Pinkerton Liberal Democrat Spokesperson (Europe)
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure timely access to NHS services for people with myalgic encephalomyelitis in Surrey Heath Constituency.- Tweet Share
- Hansard source(Citation: HC Deb, 1 December 2025, cW)
Al Pinkerton Liberal Democrat Spokesperson (Europe)
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of (a) care and (b) support for people with myalgic encephalomyelitis in Surrey Heath Constituency.- Tweet Share
- Hansard source(Citation: HC Deb, 1 December 2025, cW)
Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
We published the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), final delivery plan on 22 July 2025. The plan focusses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease, including those in the Surrey Heath Constituency.The ME/CFS final delivery plan includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for people with very severe ME/CFS across England. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.
NHS England has also started its work on co-designing resources for systems to improve services for mild and moderate ME/CFS, including for patients in the Surrey Heath constituency. It will meet a group of key stakeholders to progress this in the coming weeks.
To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the final delivery plan, the Department has worked with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. All three sessions of the e-learning programme, with sessions one and two having universal access, whilst the third session is only available to healthcare professionals, are now available at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288