UK House of Lords/ House of Commons Questions

David Warburton Conservative, Somerton and Frome
To ask the Secretary of State for Health and Social Care, if he will increase funding for (a) the treatment of and (b) research into myalgic encephalomyelitis.

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• Hansard source(Citation: HC Deb, 27 January 2023, cW)

Helen Whately Minister of State (Department of Health and Social Care)
It is the responsibility of integrated care boards to make available appropriate provision to meet the health and care needs of the local population, including people with ME/CFS. The Department is developing a cross-Government Delivery Plan on 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.

The Government invests in health research through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. The NIHR and MRC both welcome high-quality applications for research into all aspects of ME/CFS, including biomedical research. It is not usual practice to ring-fence funds for particular topics or conditions.

 

Isn't it only biomedical research which should be carried out into ME by the NIHR and MRC?

 

Alexander Stafford Conservative, Rother Valley
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential merits of using SNOMED-CT diagnostic codes to determine the number of (a) adults and (b) children living with myalgic encephalomyelitis or chronic fatigue syndrome.

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• Hansard source(Citation: HC Deb, 30 January 2023, cW)

Helen Whately Minister of State (Department of Health and Social Care)[/paste:font]
No assessment has been made.

 

Carers leave Bill
Third reading

Angela Richardson

Carer’s Leave Bill: 3 Feb 2023: House of Commons debates - TheyWorkForYou

 

Rupa Huq Labour, Ealing Central and Acton
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of providing additional funding for research into treatments for myalgic encephalomyelitis.

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• Hansard source(Citation: HC Deb, 2 May 2023, cW)

Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
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.

 

Hmm, do we think this may suggest some coordination with World ME Day (or whatever it's called), like last year where the DHSC thing was announced?

 

Carol Monaghan Shadow SNP Spokesperson (Education), Shadow SNP Spokesperson (Science, Innovation and Technology)
To ask the Secretary of State for Health and Social Care, when his Department plans to publish the cross-Government delivery plan on ME/CFS for England.

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• Hansard source(Citation: HC Deb, 9 May 2023, cW)

Helen Whately Minister of State (Department of Health and Social Care)
The Department plans to publish a draft delivery plan on ME/CFS shortly. We intend to seek views on the draft plan before publishing a final delivery plan at a later date.

 

Lloyd Russell-Moyle Labour/Co-operative, Brighton, Kemptown
To ask the Secretary of State for Health and Social Care, what plans he has for a cross-Government delivery plan on myalgic encephalomyelitis or chronic fatigue syndrome.

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• Hansard source(Citation: HC Deb, 15 June 2023, cW)

Helen Whately Minister of State (Department of Health and Social Care)
The Department plans to publish a draft delivery plan on ME/CFS shortly. We intend to seek views on the draft plan before publishing a final delivery plan at a later date.


are they taking advice from Cochrane on how to stall?

 

Hopefully ......

 

Hopefully by the time our grandchildren are old. I joke, but it's sad that all these questions lead to so little, often "We don't know" or "We don't have that information."

 

Yeah this is a terrible question, and a complete waste of time.

 

"Shortly" is code for "it's in the works, therefore I can't/won't give you a date" while "Later date" is code for "we aren't going to commit to timescale". LRM could have asked a supplemental on timescale but would have received a 'put down' response of "As I already replied to the Member.....". The format is endlessly rehearsed the Commons day in day out, and serves as a demonstration of Governmental control.

The question now is whether the substance of the reply can be leveraged to ensure a) timely publication of the draft and b) "seek views" means a proper consultation carried out in a defined timescale. If "seeks views" means internal to Government departments then the process may be lost given that we are within 18 months or less of a mandatory General Election and the whole process of Government will turn to election priorities which may not include concern for ME/CFS.

LRM's question did the job of elucidating a Government position - something has been promised (a delivery plan) with a sense of timing that can be challenged - i.e if "shortly" didn't mean before the Summer Recess (20th July) then a further written question would be justified. Questions can of course be self serving (for questioner and responder) but there is an art to a good question and like so many of Westminster processes, asking a question is Gormenghastian - A brief guide

 

Rachael Maskell Labour/Co-operative, York Central
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential impact of IV fluid interventions on patients with Postural tachycardia syndrome; and if he will take steps to support this treatment at York Hospital.

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

Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
The National Institute for Health and Care Excellence has made no assessment of the potential impact of IV fluid interventions on patients with postural tachycardia syndrome. Therefore, there are no plans to support this treatment at York Hospital.

The National Institute for Health and Care Excellence has published guidance on myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) and recommends being aware that people with these conditions may experience orthostatic intolerance, including postural orthostatic tachycardia syndrome. It does not make any recommendations on management or treatment; however, it does recommend that people with ME/CFS should maintain fluid intake as part of healthy diet.

 

That's an interesting answer. The question made no mention of ME/CFS, unless it has other unseen parts, and yet they seem aware that they are common together, something that is probably not found in many medical documentation, guidelines or otherwise.

 

Debbie Abrahams Labour, Oldham East and Saddleworth
To ask the Secretary of State for Health and Social Care, when his Department plans to release a delivery plan for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome; and if he will make a statement.

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• Hansard source(Citation: HC Deb, 5 September 2023, cW)

Debbie Abrahams Labour, Oldham East and Saddleworth[/paste:font]
To ask the Secretary of State for Health and Social Care, with reference to the action for me report entitled Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England, published May 2023, what assessment he has made of the implications for his policies of that report's findings.

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• Hansard source(Citation: HC Deb, 5 September 2023, cW)

Debbie Abrahams Labour, Oldham East and Saddleworth[/paste:font]
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the implementation of NICE Guidelines on Chronic Fatigue Syndrome.

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• Hansard source(Citation: HC Deb, 5 September 2023, cW)

Debbie Abrahams Labour, Oldham East and Saddleworth[/paste:font]
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the provision of specialist services for people with Chronic Fatigue Syndrome.

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• Hansard source(Citation: HC Deb, 5 September 2023, cW)

Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
‘My Full Reality’, the cross-government Interim Delivery Plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was published on 9 August 2023. The Plan aims to improve experiences and outcomes for people with ME/CFS by setting out agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition, and improvements to service provision. Alongside the Plan we have published an eight-week consultation to build a picture of how well the Plan meets the needs of the ME/CFS community, and to highlight any significant gaps where further action may be necessary. The Plan and consultation are available at the following link:

https://www.gov.uk/government/consu...ll-reality-the-interim-delivery-plan-on-mecfs

We have made no assessment of the implications of the report published by Action for ME, ‘Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England’, the adequacy of implementation of the National Institute for Health and Care Excellence (NICE) guideline on ME/CFS, or on the provision of specialist services for people with ME/CFS.

Integrated care boards (ICBs) are responsible for commissioning services for people with ME/CFS to meet local needs. In making commissioning decisions, we would expect ICBs to consider guidelines published by NICE.