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.
 
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