UK House of Lords/ House of Commons - relevant people and questions

hotblack said:
Me either, Wikipedia has write ups for them both
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Baroness Scott is a Conservative [LibDem] with a background in dairy farming and local government.

Lord Bethell is a Conservative hereditary peer (I keep forgetting there any left). He had a background in journalism and had a nightclub before going into politics running for a number of Parliamentary constituencies, becoming an MP not long before he inherited his title.

Perhaps we can assume good intentions, this tells us little about their likely understanding of and support for ME/CFS issues or whether they might provide a useful counter to Baroness Gerada.

[edited to correct error of fact]
 
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Peter T said:
Baroness Scott is a Conservative with a background in dairy farming and local government.

Lord Bethell is a Conservative hereditary peer (I keep forgetting there any left). He had a background in journalism and had a nightclub before going into politics running for a number of Parliamentary constituencies, becoming an MP not long before he inherited his title.

Perhaps we can assume good intentions, this tells us little about their likely understanding of and support for ME/CFS issues or whether they might provide a useful counter to Baroness Gerada.
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I agree that question Cuts to the chase. It seems the charities drive the questions often , so they need to. As a severely affected persOn , I still have no vision for what NICE compliant is supposed to mean, The coroner said severely affected outpatient Care wasn’t really covered. Afaic, service provision has to cover all severities, at any stage, rather than being seen as for diagnosis only. There should have been time frames and plans for “implementation” from the get go.
 

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure a strategic approach to biomedical research into myalgic encephalomyelitis and chronic fatigue syndrome.

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, if he will make a comparative review into the adequacy of the level of funding for research into myalgic encephalomyelitis compared to other illnesses.

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, if he will consider ringfencing funding for research into myalgic encephalomyelitis.

Photo of Zubir AhmedZubir Ahmed The Parliamentary Under-Secretary for Health and Social Care​

The Department funds research through the National Institute for Health and Care Research (NIHR).

We are committed to working with the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes. As part of our approach, together with the Medical Research Council (MRC), we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS Final Delivery Plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical interventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including ME/CFS and long COVID, in November to stimulate further research in this field.

We have previously discussed ringfenced funding with the ME/CFS community during the development of the Final Delivery Plan for ME/CFS, as well as at subsequent meetings and roundtables on ME/CFS and long COVID. However, this is not usual practice for research funders as applications in all areas should compete for the funding available to uphold transparency and accountability. The NIHR welcomes funding applications for research into any aspect of human health and care, including ME/CFS. Our position is that welcoming applications on ME/CFS to all programmes enables maximum flexibility both in terms of the amount of research funding and the type of research which can be funded.

There has been no specific comparative review on the level of funding for research into ME/CFS compared to other illnesses. The Department invests over £1.6 billion each year on research through the NIHR, including on 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.
 

Photo of Navendu MishraNavendu Mishra Labour, Stockport​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve the (a) training and (b) awareness of healthcare professionals in (i) diagnosing and (ii) supporting people with (A) myalgic encephalomyelitis or chronic fatigue syndrome and (B) long COVID.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

The Department published the final myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), delivery plan on 22 July. The plan focusses on boosting research, improving education and attitudes, and bettering the lives of people with this debilitating disease.

To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the ME/CFS 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 are now available on the NHS.UK website, with sessions one and two having universal access whilst the third session is only available to healthcare professionals, at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288.

The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.

There is also targeted advice for healthcare professionals to manage long COVID. Patients should be managed according to current clinical guidance, such as that published and updated by the National Institute for Health and Care Excellence, which is available at the following link:

https://www.nice.org.uk/guidance/NG188
 
Tao Fogger said:

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure a strategic approach to biomedical research into myalgic encephalomyelitis and chronic fatigue syndrome.

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, if he will make a comparative review into the adequacy of the level of funding for research into myalgic encephalomyelitis compared to other illnesses.

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, if he will consider ringfencing funding for research into myalgic encephalomyelitis.

Photo of Zubir AhmedZubir Ahmed The Parliamentary Under-Secretary for Health and Social Care​

The Department funds research through the National Institute for Health and Care Research (NIHR).

We are committed to working with the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes. As part of our approach, together with the Medical Research Council (MRC), we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS Final Delivery Plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical interventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including ME/CFS and long COVID, in November to stimulate further research in this field.

We have previously discussed ringfenced funding with the ME/CFS community during the development of the Final Delivery Plan for ME/CFS, as well as at subsequent meetings and roundtables on ME/CFS and long COVID. However, this is not usual practice for research funders as applications in all areas should compete for the funding available to uphold transparency and accountability. The NIHR welcomes funding applications for research into any aspect of human health and care, including ME/CFS. Our position is that welcoming applications on ME/CFS to all programmes enables maximum flexibility both in terms of the amount of research funding and the type of research which can be funded.

There has been no specific comparative review on the level of funding for research into ME/CFS compared to other illnesses. The Department invests over £1.6 billion each year on research through the NIHR, including on 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.
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Great questions, Terrible answers.

Comparing illnesses would reveal that over the past 5 years they invested about £5m in ME/CFS, £57m In long covid, £75m in Parkinson’s disease & about £500m in dementia.

All that the tried, tested & failed open field of "welcoming proposals" is doing is giving them the flexibility to turn down proposals like the research Hub & Karl Morten and I believe Danny altmann’s & continue to leave stigmatised ME/CFS on peanuts.
 
There was a debate on ME in the House of Commons yesterday. The full debate can be seen here: https://www.theyworkforyou.com/whall/?id=2025-11-19a.382.0

Photo of Tessa MuntTessa Munt Liberal Democrat, Wells and Mendip Hills ​

I beg to move,

That this House
has considered Government support for people with myalgic encephalomyelitis.

It is a pleasure to serve under your chairship, Mr Mundell. Myalgic encephalomyelitis is a complex, chronic condition affecting multiple body systems. There is currently no cure or established treatment. The symptoms of ME go far beyond chronic fatigue or being very tired; the sickest patients lie alone in darkened rooms, sometimes unable to move or to speak—or, in the very worst cases, to swallow or to digest food. Even at the mildest end of this condition, people with ME who once had lives, hopes and dreams for the future live a Shadow of their former lives.

More than five years on from the start of the covid pandemic, it is timely to note how the numbers affected have increased. Approximately half of those with long covid go on to meet the diagnostic criteria for ME, so it is now estimated that 1.35 million people live with ME or ME-like symptoms. That includes healthcare workers, teachers and other key workers who kept our country running at the height of the pandemic. Add in carers, and even more are directly affected.

Importantly, there is a gendered dimension, with women five times more likely than men to develop ME. Despite the devastating toll of the condition, people with ME have endured decades of substandard and sometimes downright unsafe healthcare, with pitifully little funding for research. In spite of the lack of robust evidence to this effect, ME is treated as though the condition is psychiatric.

[There is much more after this opening statement, but too much for me to copy and paste here]
 
The ME association say
“So the fight goes on…“

The MEA and I have very different views on what fight means.

After the 2002 chief medical officers report Dr Charles Shepherd wrote To the MRC or had a meeting about the recommendation in the 2002 chief medical officers report for Commissioned research and the MRC said that wasn’t going to happen. And Dr Charles Shepherd reported that back and moved on to the next thing - the MRC carrot of collaboration, in the form of the MRC expert group, (which seems to have been the MRC response to or attempt to control the narrative following the 2007 Gibson / parliamentary report which was highly critical of that fact that the 2002 chief medical officers report wasn’t implemented and it called for £13 million immediate investment etc).

When the MRC were saying we could have a small start only in 2013 and we couldn’t have continued ring-fenced funding there was no push back and acceptance, until 2020, of a genetics only research focus, which fulfilled neither the 2002 chief medical officers request for a strategy and research on all apects or met the severe ME needs for urgency, &a well funded, comprehensive research strategy.

When #MEAction was born 2016 and at that time was the most exciting global movement, The ME association chose not to publicise the crucially Important first #millionsmissing protests , despite repeated requests, which helped , with lack of media or numbers, this novel and potentially media grabbing initiative to fizzle out

The only way Afaics m.e charities want to bring progress is through behind the scenes negotiations, with in my opinion bad faith actors. And if the bad faith establishment actors say no, not yet , then they fold in / work with whatever little they offer and wait until the next event. And this happens repeatedly until our lives slide out of view. Both main, and in my view deeply conservative, charity leads have said to me, as I’ve interpreted them, on different occasions that they don’t want to even petition because they didn’t want to negatively impact their relationship or whatever work with MRC was going on, with action for me saying at the beginning of the decade that they felt they had the ear of the MRC, well how did having that Ear and 2 decades of collaboration work out…
 

Photo of John HayesJohn Hayes Conservative, South Holland and The Deepings​

To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with ME in Lincolnshire.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

The Lincolnshire Partnership NHS Foundation Trust’s Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Service is a specialist service which provides assessment and advice on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), management strategies.

This service is available to adults and children. The ME/CFS service team consists of a wide range of skilled staff, including consultant clinical psychologists, assistant psychologists, specialist occupational therapists, and rehabilitation staff.

At a national level, the ME/CFS Final Delivery Plan, which the Department published in July, 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 very severe ME/CFS. 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. It will meet a group of key stakeholders to progress this in the coming weeks.
 
Tao Fogger said:
The ME/CFS service team consists of a wide range of skilled staff, including consultant clinical psychologists, assistant psychologists, specialist occupational therapists, and rehabilitation staff.
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And therein lies the problem. Where are the doctors? Where is the joined up service for all pwME?
Tao Fogger said:
NHS England has also started its work on co-designing resources for systems to improve services for mild and moderate ME/CFS. It will meet a group of key stakeholders to progress this in the coming weeks.
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Yikes. Nicely timed for the MEA/ELAROS/BACME launches. We're stuffed.

There is nothing in this answer for pw severe ME/CFS
 
Can we have some type of pushback against the expedient erasure of severe m,e? It’s possible they want to provide only (interesting wording) “advice on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), & management strategies.” for the mild-moderate who can get out to travel to attend appointments, put out apps for the areas without services, and the barest of minimum for very severe, (to avoid the embarrassment of people dying?). This is a refusal to U-turn to a general, and more costly, medical model. This in no way meets expressed patient views eg MEA survey re NHS care 2010.

If the DHSC was so proud of the “transformation” they were delivering, why did they sneak it out at the latest possible hour, on the last possible day of the parliamentary session, to bury it in the summer holiday?
 
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