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

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, what proportion of people diagnosed with Myalgic Encephalomyelitis who applied for NHS Continuing Healthcare funding were (a) assessed as eligible following a Decision Support Tool assessment and (b) refused following a Decision Support Tool assessment in each of the last five years.

Photo of Stephen KinnockStephen Kinnock Minister of State (Department of Health and Social Care)​

NHS England does not collect data on the proportion of people diagnosed with myalgic encephalomyelitis who are found eligible for NHS Continuing Healthcare (CHC), or any other condition. Eligibility for CHC is not determined by diagnosis or condition, but is assessed on a case-by-case basis taking into account the totality of an individual’s needs, and whether they constitute a ‘primary health need’.

Operational delivery of CHC is the responsibility of integrated care boards (ICBs), including conducting CHC assessments using the standardised Decision Support Tool. NHS England holds ICBs to account, including through robust assurance mechanisms, to ensure they are delivering their statutory functions.
 
NHS England does not collect data on ... myalgic encephalomyelitis
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This would be the accurate statement. It doesn't concern itself with ME/CFS at all. So far in all these questions asked attempting to quantify any important stats about ME diagnosis and treatment in the NHS they have managed to show they have not collected any. How it is they are ensuring the statuatory functions are being met given they don't do anything I have no idea, and neither do they.
 

Photo of Sureena BrackenridgeSureena Brackenridge Labour, Wolverhampton North East​

To ask the Secretary of State for Health and Social Care, for what reason the action relating to a specialised service for patients with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was included in the Final Delivery Plan without full consideration of system constraints affecting its implementation.

Photo of Sharon HodgsonSharon Hodgson The Parliamentary Under-Secretary for Health and Social Care​

The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.
 

Photo of Sureena BrackenridgeSureena Brackenridge Labour, Wolverhampton North East​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure integrated care boards are accountable for commissioning effective services for patients with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome until the nationally commissioned specialised service is introduced.

Photo of Sharon HodgsonSharon Hodgson The Parliamentary Under-Secretary for Health and Social Care​

The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

[There seems to be a theme here ;) As above, I will try to remember to come back and post a reply to this when there is one]
 

Photo of Ben LakeBen Lake Plaid Cymru, Ceredigion Preseli​

To ask the Secretary of State for Health and Social Care, what assessment he has made of progress made by UK-based researchers funded by his Department on finding methods to treat the symptoms of long Covid.

Photo of Ben LakeBen Lake Plaid Cymru, Ceredigion Preseli​

To ask the Secretary of State for Health and Social Care, how much public funding is allocated to support UK-based research into methods to treat and cure long Covid.

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

The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). Between 2020/2021 and 2024/25, the NIHR invested nearly £51 million into Long Covid research, including research into treatments. As well as funding research itself, the Department invests significantly in research expertise and capacity, specialist facilities, support services, and collaborations to support and deliver research in England, known as NIHR infrastructure.

While there has been no formal assessment of the progress of United Kingdom based research into Long Covid, it is clear that NIHR-funded research has delivered important findings. The REGAIN trial provided the first high quality evidence confirming the sustained clinical benefit and lack of harm with rehabilitation programmes for Long Covid. The NIHR has also funded research to test and compare different treatments such as antihistamines, anticoagulants, and anti-inflammatory medicines through the STIMULATE-ICP trial. The NIHR has also provided £1.1 million in funding towards the LISTEN trial, which found that the participants who received the LISTEN self-management tool Intervention had greater capacity for daily activities, improved mental health, reduced fatigue impact, and increased self-efficacy.

However, there is more work to be done to find the most promising treatments, and we are actively exploring next steps for long COVID research. This includes a development award focussed on evaluating repurposed and new interventions for post-acute infection syndromes and associated conditions, including long COVID. Two projects have recently been awarded funding.
 
UK government said:
While there has been no formal assessment of the progress of United Kingdom based research into Long Covid, it is clear that NIHR-funded research has delivered important findings
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So they keep saying, and yet there is no actual evidence of that, and in fact this is completely false. Every bit of research published this year and all clinical programs are stuck in time 3+ decades ago, absolutely nothing was actually achieved or even learned.
The REGAIN trial provided the first high quality evidence confirming the sustained clinical benefit and lack of harm with rehabilitation programmes for Long Covid
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And this is a blatant lie. It's widely known that there are no treatments, but they keep lying because there are no consequences, and in fact it's encouraged. What's worse is that those are straight up political lies, but most medical professionals would agree with that, though mainly because they don't care either anyway. Biased government is backed by biased systems where the opinions of biased people dominate.

It's the lack of consequences, of accountability, but more than anything it's all the damn bias. Bias is the only thing that matters. Positive bias can achieve outcomes, negative bias can't. All the bias here is negative, hence nothing was actually achieved, while they pretend because of all the negative bias.

Only bias seems to matter, frankly, unless a machine can replace biased humans in the loop. It's what provides the motivation, and there obviously isn't any here. Everything is stuck in time, and it might as well be the 15th century here.
 
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