UK House of Lords/ House of Commons Questions

That's because they don't claim they are biomedical. One question was asked, "how much is planned to be spent on biomedical research", a different but related answer was given by merely listing what research has been previously funded.

The accountability, in this example, comes from the MP asking the question and/or the opposition parties. Not sure what you mean by your claim "no one involved at this level cares"; while fewer than we would like, there are MPs such as Carol Monaghan who do care about how ME is treated and researched in the UK.

 

Thank you @CRG - I thought my tweet of yesterday was depressing enough, but have amended to include your excellent breakdown & RT to include Tulip Siddiq, MP

https://twitter.com/user/status/1603347094063837184

 

I just emailed her. Basically asking if she was happy with the non-answer...

 

We should also bear in mind that civil servants tasked with responding to a PQ of the form “what is the government doing about X?” always furnish the minister with a list of X-adjacent achievements that sound plausible enough to bat the question back.

This does not in any way suggest that anyone involved has been nobbled by sinister BPS cabals, or that they have any particular interest in blurring the distinction between biophysical and BPS research.

Loving the ensuing community engagement with Siddiq, though, and I really hope she makes the most of it.

 

Ben Bradshaw Labour, Exeter
To ask the Secretary of State for Health and Social Care, how many people in the UK have been diagnosed with severe Myalgic Encephalomyelitis, as defined in the NICE guidelines.

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• Hansard source(Citation: HC Deb, 19 December 2022, cW)

Helen Whately Minister of State (Department of Health and Social Care)
The information requested is not held centrally.

 

Is there a seperate code for Severe ME? I don't think there is.

For people coded with ME/CFS I think its the regional NHS bodies (commissioning support units) that hold that data and ICSs can get access (not 100% sure about that)

 

SevereME:
SNOMED coding -
https://snomedbrowser.com/Codes/Details/52702003

I would guess that the vast majority of patients in the UK NHS system are coded with “Xa01F” which is the standard ‘chronic fatigue syndrome’ code.

Yes there are separate codes for mild, moderate and severe - but I would think that these are very rarely used as most GPs are not aware of the differences.

https://snomedbrowser.com/Codes/Details/377161000000108

Data
Various charities and local ME support groups have tried(/are trying) to obtain up-to-date statistics on the number of PwME in the UK. Attempts are still being made to obtain information but it is not easy.

 

This is exactly what we have found with the work done for DecodeME, at least in regard to the data available to us from the UK Biobank.

 

I would bet money that GPs don't consistently record us with the correct MECFS codes anyway so half of us probably have 'fatigue' or nothing

 

Alexander Stafford Conservative, Rother Valley
To ask the Secretary of State for Health and Social Care, whether his Department has commissioned research into the (a) causation and (b) treatment of children with chronic fatigue syndrome.

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• Hansard source(Citation: HC Deb, 12 January 2023, cW)

Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR is funding four research projects with a specific focus on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children, with a combined funding value of approximately £1.5 million. Between them, these projects are focussed on characterising ME/CFS in children and developing and identifying potential treatments, rather than elucidating an underlying cause. More broadly, the NIHR has provided approximately £4.4 million for research on ME/CFS since 2011. The NIHR welcomes applications for research into ME/CFS causation and treatment in children.

 

which research projects are these I wonder? EC?

 

Alexander Stafford Conservative, Rother Valley
To ask the Secretary of State for Health and Social Care, how many children have been diagnosed with myalgic encephalomyelitis or chronic fatigue syndrome in (a) Rother Valley constituency and (b) England in the latest period for which data is available.

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• Hansard source(Citation: HC Deb, 13 January 2023, cW)

Helen Whately Minister of State (Department of Health and Social Care)[/paste:font]
The information requested is not collected centrally.

 

As far as I could see by searching here, these are the only two that the NIHR have funded and are still in progress.

In progress: Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice, Crawley et al

Using activity tracking and just-in-time messaging to improve adaptive pacing in people with long COVID: a pragmatic randomised control trial

 

There seem to be several unfinished studies here: https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/

Most don't specify source of funding, other than their work on the Lightning Process, which states "Funded by the Linbury Trust". Alarming that they are still investigating it!

There are other ways of getting NIHR funding, such as Research Capability Funding (RCF) https://www.nihr.ac.uk/researchers/...your-research/research-capability-funding.htm

"What are the benefits of receiving RCF?
RCF provides NHS organisations with:

• access to flexible funding
• a means for developing and sustaining research capability, meeting the costs of key research support staff not funded in other ways
• help building critical mass, because increased research capacity attracts additional NIHR research income and so attracts a greater share of RCF
• a financial contribution towards the costs incurred by research-active NHS organisations hosting research funded by the NIHR, or its funding partners
• funding for developing research management capabilities in those Trusts where R&D departments have been reconfigured within NHS research support services."

This type of £ presumably goes to the "Golden Girls and boys" who publish and promote their amazing successes....

Interestingly, only 5 of c 350 Trusts or CCGs are allocated over £1m for 22/23 and Bristol is one of them.

 

that one appears to exclude pwME(?)
so it's just the one by Crawley(?)
not sure how twitter works but is there any way Alexander Stafford (who's on twitter) could be contacted and asked to ask what the '4 research studies' the minister refers to are?

 

The majority of " research done at Kings on CFS/PPS etc" rarely appears in responses to funding questions. (PPS =Persistent Physical Symptoms and has been the name of the clinic where people with ME/CFS have been seen)

Apart from some PhD funding and work of a few individuals, such as Kimberley Goldsmith (statistician) the funding generally comes from:

"Funding Information: The study was funded by Guy's and St. Thomas' Charity. Funding Information: TC, SL, KG and RMM acknowledge that this paper represents independent research part-funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust , King's College London and the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King's College Hospital NHS Foundation Trust . The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. Publisher Copyright: © 2022 The Authors"
https://kclpure.kcl.ac.uk/portal/en...ms(dde4e127-9dd8-4afe-8bf4-f200dcf782ba).html

These amounts do not seem to be included in Parliamentary Questions or otherwise publicly available.

 

Alexander Stafford Conservative, Rother Valley
To ask the Secretary of State for Education, what support the Government provides to children in full-time education who have myalgic encephalomyelitis or chronic fatigue syndrome.

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• Hansard source(Citation: HC Deb, 17 January 2023, cW)

Claire Coutinho The Parliamentary Under-Secretary of State for Education[/paste:font]
The department is committed supporting pupils with medical conditions so that they have full access to education. In 2014, the department introduced a new duty on schools to support pupils with all medical conditions, including myalgic encephalomyelitis or chronic fatigue syndrome. Statutory guidance for schools on how to support pupils with medical conditions has been published and is available at: https://www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3.

The guidance does not specify which medical conditions should be supported in schools. It focuses on how to meet the needs of each individual child and how their medical condition impacts on school life.

The statutory guidance states that governing boards should ensure any member of school staff providing support to a pupil with medical needs has received suitable training. This is to ensure that staff are competent and have confidence in their ability to support pupils with medical conditions, and to fulfil the requirements as set out in individual healthcare plans (IHPs).

Schools also have duties under the Equality Act 2010 to make reasonable adjustments and not to discriminate against disabled children, including those with certain long-term health conditions, in relation to their access to education and associated services. Schools must make reasonable adjustments to their practices, procedures, and policies to ensure that they are not putting those with certain long-term health problems at a substantial disadvantage.

 

Alexander Stafford Conservative, Rother Valley
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve (a) experiences and (b) outcomes for children living with myalgic encephalomyelitis or chronic fatigue syndrome.

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• Hansard source(Citation: HC Deb, 18 January 2023, cW)

Helen Whately Minister of State (Department of Health and Social Care)[/paste:font]
We are developing a cross-Government Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). As part of the plan, we are working with other Government departments and stakeholders to determine ways to improve experiences and outcomes for all people who have ME/CFS, including children.

 

Wera Hobhouse Liberal Democrat Spokesperson (Transport), Liberal Democrat Shadow Leader of the House of Commons, Liberal Democrat Spokesperson (Energy and Climate Change)
To ask the Secretary of State for Health and Social Care, what steps he is taking to support patients diagnosed with chronic fatigue syndrome or myalgic encephalomyelitis.

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• Hansard source(Citation: HC Deb, 23 January 2023, cW)

Helen Whately Minister of State (Department of Health and Social Care)[/paste:font]
The Department is developing a cross-Government delivery plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). As part of the delivery plan, we are working with other Government Departments and stakeholders to determine ways to improve experiences and outcomes for all people who have ME/CFS.