UK House of Lords/ House of Commons Questions

Alex Sobel Shadow Minister (Digital, Culture, Media and Sport)
To ask the Secretary of State for Health and Social Care, if he will make it his policy to ensure that NICE publishes the ME/CFS Guidelines in their current form to help prevent harm from Graded Exercise Therapy.

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• Hansard source (Citation: HC Deb, 25 October 2021, cW)

Edward Argar Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for publishing its final guidance. NICE issued a statement on 20 October stating that it will publish its updated guideline on myalgic encephalomyelitis/chronic fatigue syndrome following a meeting of its guidance executive on 26 October.

 

2017 question as originally posted here

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-11-22/HL3499/

The Countess of Mar

To ask Her Majesty's Government when the Chronic Fatigue Syndrome/Myalgic Encephalomyelitis National Outcomes Database ceased to exist; and why the data included in that database is no longer
collected.

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-11-22/HL3501/

The Countess of Mar

To ask Her Majesty's Government whether parental consent was obtained by school attendance officers before parents were sent letters by researchers for the study entitled Unidentified Chronic Fatigue
Syndrome/myalgic encephalomyelitis is a major cause of school absence: surveillance outcomes from school-based clinics, published by the British Medical Journal in 2011.



Yes I do and it was the task assigned to Bath.... Say no More. ..
Under umbrella of Esther C and her fellow colleague Simon Collin .....
WE did quite a lot of research on this including having conversations with "Simon C " when he 'Moved on" after issuing various papers with EC.

 

https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-11-217
The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database

• Simon M Collin,
• Esther Crawley,
• Margaret T May,
• Jonathan AC Sterne,
• William Hollingworth &
• UK CFS/ME National Outcomes Database

BMC Health Services Research volume 11, Article number: 217 (2011) Cite this article

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The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME National Outcomes Database

• September 2011
• BMC Health Services Research 11(1):217

DOI:10.1186/1472-6963-11-217

• Source
• PubMed

Authors:

Simon M Collin

• Public Health England

Esther Crawley

• University of Bristol

Margaret May

• University of Bristol

Jonathan A C Sterne

• University of Bristol

Download full-text PDFRead full-text
Download full-text PDF
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Citations (78)
References (40)
Figures (1)
Abstract and Figures
Few studies have investigated factors associated with discontinuation of employment in patients with CFS/ME or quantified its impact on productivity. We used patient-level data from five NHS CFS/ME services during the period 01/04/2006-31/03/2010 collated in the UK CFS/ME National Outcomes Database. We used logistic regression to identify factors associated with discontinuation of employment. We estimated UK-wide productivity costs using patient-level data on duration of illness before assessment by a CFS/ME service, duration of unemployment, age, sex and numbers of patients, in conjunction with Office for National Statistics income and population data. Data were available for 2,170 patients, of whom 1,669 (76.9%) were women. Current employment status was recorded for 1,991 patients (91.8%), of whom 811 patients (40.7%) were currently employed and 998 (50.1%) had discontinued their employment "because of fatigue-related symptoms". Older age, male sex, disability, fatigue, pain, and duration of illness were associated with cessation of employment. In a multivariable model, age, male sex, and disability remained as independent predictors. Total productivity costs among the 2,170 patients due to discontinuation of employment in the years preceding assessment by a specialist CFS/ME service (median duration of illness=36 months) were £49.2 million. Our sample was equivalent to 4,424 UK adults accessing specialist services each year, representing productivity costs to the UK economy of £102.2 million. Sensitivity analyses suggested a range between £75.5-£128.9 million. CFS/ME incurs huge productivity costs amongst the small fraction of adults with CFS/ME who access specialist services.

 

Concerned as this appears to be released in September 2021... by someone within NHS England....Simon Collin...

 

I am confused about what you mean by "this appears to be released in September 2021" and a screenshot of Google links.

https://www.researchgate.net/public...based_on_the_CFSME_National_Outcomes_Database

The paper

The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME National Outcomes Database
DOI: 10.1186/1472-6963-11-217

as uploaded to ResearchGate, is dated September 2011.

But the PDF of this paper may not have been uploaded by one of the authors to the ResearchGate platform until September, this year, when its presence on ResearchGate was picked up by Google - which might account for the more recent date in the Google link.

If you are registered on ResearchGate as a published author, you can upload abstracts and full papers you have authored or co-authored or provide an author's copy direct to requestors who have asked you for a copy via the ResearchGate platform.

 

Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, what recent assessment his Department has made of the benefits and dis-benefits of graded exercise therapy for myalgic encephalomyelitis and chronic fatigue syndrome patients.

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• Hansard source (Citation: HC Deb, 11 November 2021, cW)

Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, what steps he plans to take to ensure that medical practitioners cease to recommend graded exercise therapy to myalgic encephalomyelitis and chronic fatigue syndrome patients following the publication of the updated NICE guidelines on myalgic encephalomyelitis and chronic fatigue syndrome.

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• Hansard source (Citation: HC Deb, 11 November 2021, cW)

Edward Argar Minister of State (Department of Health and Social Care)
The Department has made no assessment. The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based guidance for the health and care system. NICE published its updated guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on 29 October. The updated guideline does not recommend the use of graded exercise therapy in the management of ME/CFS. NICE’s full guidance is available at the following link:

https://www.nice.org.uk/guidance/ng206

NICE’s guideline describe best practice and should be taken fully into account in the care and treatment of individual patients. However, it is not mandatory and do not override a medical practitioner’s clinical judgement.

 

Is that correct? I thought it recommended that it be not used, which is rather different.

 

Surely "However, it is not mandatory and do not override a medical practitioner’s clinical judgement."

Should read "However, it is not mandatory and does not override a medical practitioner’s clinical judgement."

 

Barry Sheerman Labour/Co-operative, Huddersfield
To ask the Secretary of State for Health and Social Care, what steps he is taking to help ensure high standards of care by the NHS and other healthcare providers to those diagnosed with Myalgic Encephalomyelitis.

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• Hansard source (Citation: HC Deb, 25 November 2021, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
Services for those with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), are commissioned locally by clinical commissioning groups (CCGs). CCGs are best placed to plan the provision of services subject to local need and ensure high standards of care are maintained.

The National Institute for Health and Care Excellence (NICE) publishes guidelines on best practice for the care, treatment and support of patients. NICE published its updated guideline on the diagnosis and management of CFS/ME in adults and children on 29 October 2021.

 

My bold. The new guideline is for ME/CFS, not CFS/ME. An important distinction, and an error that should maybe be corrected on Hansard?

 

Beat me to it!

 

Has anyone asked for a correction? If not how would this be done?

 

Probably not in Hansard, which records what was said/written (even if it's not entirely correct).

 

Oh!

Yet that is incorrect info supplied in response to a question, so surely there has to be some way of correcting the record?

 

Aren’t ministers meant to issue a statement any correcting errors of fact they make in Parliament? There has been a fair amount of fuss recently when ministers and the Prime Minister have just ignored requests for them to do this.

Unfortunately there does not seem to mechanism to oblige ministers to correct errors of fact. However, one could write to the minister requesting a correction, and then if that fails also write to the shadow minister, asking them to request a correction in Parliament, which though it might not get the minister to issue a correction at least gets the possibility that the original statement was an error also recoded in Hansard.

Sometimes relevant parts of the civil service will fact check what is said in Parliament, though I image they are normally reluctant to openly criticise a minister.

 

Of course DHSC civil servants responsible for providing this answer should be expected to know, or else copy accurately, the information they disseminate to their ministers. This is a very sad reflection of the state of administration.

 

That seems a sensible approach. Will do.

 

Hywel Williams Shadow PC Spokesperson (International Development), Shadow PC Spokesperson (Work and Pensions), Shadow PC Spokesperson (Defence), Shadow PC Spokesperson (Cabinet Office), Shadow PC Spokesperson (International Trade), Shadow PC Spokesperson (Foreign Affairs), Shadow PC Chief Whip
To ask the Secretary of State for Health and Social Care, whether he has plans to fund research into mitochondria cells and the effect upon them in relation to sufferers of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome; and if he will make a statement.

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• Hansard source (Citation: HC Deb, 1 December 2021, cW)

Maria Caulfield The Parliamentary Under-Secretary for Health and Social Care
The Department funds research through the National Institute for Health Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). However, it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. We will continue to work with stakeholders to consider how best to support continued research into ME/CFS.