UK House of Lords/ House of Commons Questions

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-13/231932/

Sir Henry Bellingham

To ask the Secretary of State for Health and Social Care, what recent discussions he has had with representatives of medical training bodies on ensuring that training programs for doctors, nurses and other health professionals include the most up to date guidance on diagnosis and
appropriate treatment of myalgic encephalomyelitis.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-14/232584/

Ruth Cadbury

To ask the Secretary of State for Education, what steps he's taken to support access to schooling for children with Chronic Fatigue Syndrome.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-13/231933/

Sir Henry Bellingham

To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on bringing forward the release of the revised NICE guidelines on ME, due to be published in October 2020.

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-13/231934/

Sir Henry Bellingham

To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on issuing an interim warning on the potential dangers of graded exercise therapy (GET) as a treatment for ME, prior to issuing its revised guideline in October 2020.

 

I'm OK with the 2nd question, not so sure about the 1st. Far better a thorough job done than a rushed one. But good that MPs are paying attention though.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-13/231931/

Sir Henry Bellingham

To ask the Secretary of State for Business, Energy and Industrial Strategy, what assessment he has made of the potential merits of ring-fencing Medical Research Council funds for biomedical research into ME in order to ensure that overall research funding for ME is proportional to that spent on research into similarly prevalent health conditions.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-18/233615/

Alex Chalk

To ask the Secretary of State for Health and Social Care, whether the Government has any plans to review the RCGP Advanced Knowledge Test in relation to ME and Chronic Fatigue Syndrome to ensure it

(a) remains up-to-date and
(b) demonstrates best practice for treatment of those conditions.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-19/234154/

Nicky Morgan

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of ring-fencing Medical Research Council funds for biomedical research on myalgic encephalomyelitis (ME) in order to ensure that overall research funding for ME is proportional to that spent on research into similarly prevalent health conditions.

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-19/234155/

Nicky Morgan

To ask the Secretary of State for Health and Social Care, what recent discussions he has had with medical training bodies on ensuring that training programs for doctors, nurses and other health professionals include the most up to date guidance on diagnosis and appropriate treatment of myalgic encephalomyelitis.

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-19/234156/

Nicky Morgan

To ask the Secretary of State for Health and Social Care, pursuant to the debate of 24 January 2019 on Appropriate ME Treatment, what recent discussions his Department has had with NICE on the potential merits of fast-tracking the release of the revised NICE guideline on myalgic
encephalomyelitis due to be published in October 2020.

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-19/234157/

Nicky Morgan

To ask the Secretary of State for Health and Social Care, pursuant to the debate of 24 January 2019 on Appropriate ME Treatment, what recent discussions his Department has had with NICE on the potential merits of issuing an interim warning on the potential dangers of graded exercise
therapy as a treatment for myalgic encephalomyelitis prior to issuing its revised guideline myalgic encephalomyelitis in October 2020.

 

go Nicky!

 

Bet that's made Sharpe happy!

 

Go Nicky Morgan!

 

Source: UK House of Commons

Date: March 20, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-03-13/231931/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome
------------------------

Sir Henry Bellingham

To ask the Secretary of State for Business, Energy and Industrial Strategy, what assessment he has made of the potential merits of ring-fencing Medical Research Council funds for biomedical research into ME in order to ensure that overall research funding for ME is proportional to that spent on research into similarly prevalent health conditions. [231931]

Chris Skidmore

The Medical Research Council (MRC) is part of the BEIS partner organisation, UK Research and Innovation. The MRC supports research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in response to high-quality proposals from the research community.

The MRC does not generally ring-fence funding for specific conditions, however CFS/ME is an identified priority area for the MRC. Proposals are particularly encouraged in areas that explore the underpinning mechanisms of CFS/ME (including immune dysregulation), pain, improved
sub-phenotyping and stratification of CFS/ME disease, and mechanisms of CFS/ME in children.

All proposals are subject to peer review and judged in open competition, with awards being made according to their scientific quality and importance to human health.

 

Source: UK House of Commons

Date: March 20, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-03-12/231512/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome
------------------------

Thangam Debbonaire

To ask the Secretary of State for Health and Social Care, if he will make an assessment of the effectiveness of the PACE trial of therapies on reducing the effects of

(a) myalgic encephalomyelitis and

(b) chronic fatigue syndrome. [231512]

Steve Brine

The PACE trial, undertaken by Queen Mary University of London, was the largest ever trial of therapies for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The trial aimed to test and compare the effectiveness of four of the main treatments available for people CFS/ME. These were adaptive pacing therapy, cognitive behaviour therapy (CBT), graded exercise therapy, and standardised specialist medical care (SMC).

The five-year trial involved over 600 participants, aged 18 and over, in Scotland and England. The first set of results from the trial were published in 2011 in the Lancet, and a number of other evaluations based on the trial have been published since. The trial results found both CBT and GET were moderately effective when provided alongside SMC and were better than adaptive pacing therapy or SMC alone in improving both symptoms and disability.

The National Institute for Health and Care Excellence (NICE) guideline 'Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):

Diagnosis and management of CFS/ME in adults and children', sets outs best practice for clinicians on the diagnosis, treatment, care and support of people with the condition. The guideline recommends CBT and GET as appropriate treatments for mild to moderate CFS/ME, in line with the best available evidence.

The NICE guideline acknowledges that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. Decisions concerning the appropriateness of treatments should be made on a case by
case basis.

On 20 September 2017, NICE announced its decision to undertake a full update of the guideline, following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. New guidance is expected in October 2020. More information on this decision can be found at the following link:

http://www.nice.org.uk/news/article...ance-on-the-diagnosis-and-treatment-of-cfs-me

 

Well he obviously doesn't listen to or read @dave30th and patients! Or read more up to date criticism of the trial from others too. Just toe the party line.

 

This argument needs to be pressed more. "The PACE trial says so" is not a valid response to "what evidence do you have of PACE-style treatment after 10 years of nation-wide implementation?" Thousands have used those. The NHS says "ask the clinics" and the clinics say "ask the NHS". That's non-responsive and accountable governments have legal obligations to show they are relying on actual evidence to guide their decisions.

There cannot be no evidence. Either there is and it's bad, or the whole thing needs to be exploded and everyone involved fired because running medical services to tens of thousands for a full decade and not bothering to find out if it works is equally bad. This is something that can only be done in cross-examination, as non-responsive responses like this one will always brush off the substance of the question.

 

Source: UK House of Commons

Date: March 21, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-03-13/231932/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome
------------------------

Sir Henry Bellingham

To ask the Secretary of State for Health and Social Care, what recent discussions he has had with representatives of medical training bodies on ensuring that training programs for doctors, nurses and other health professionals include the most up to date guidance on diagnosis and appropriate treatment of myalgic encephalomyelitis. [231932]

Steve Brine

Ministers at the Department regularly meet with medical training bodies including the General Medical Council, to discuss many issues. However, there have been no recent discussions with medical training bodies to discuss the guidance on myalgic encephalomyelitis (ME).

In terms of training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP) set the standards for postgraduate medical education in general practice. General practice is where most patients with chronic fatigue syndrome (CFS)/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide.

The AKT is a summative assessment of the knowledge base that underpins general practice in the UK within the context of the NHS and is a key part of general practitioners' qualifying exams.

On 20 September 2017, the National Institute for Health and Care Excellence announced its decision to undertake a full update of the guideline, 'Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and
children', following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. New guidance is expected in October 2020. More information on this decision can be found at the following link:

http://www.nice.org.uk/news/article...ance-on-the-diagnosis-and-treatment-of-cfs-me

 

Source: UK House of Commons

Date: March 21,, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-03-13/231933/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome: Medical Treatments
--------------------------------------------

Sir Henry Bellingham

To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on bringing forward the release of the revised NICE guidelines on ME, due to be published in October 2020. [231933]

Steve Brine

The Department has had no such discussions. The National Institute for Health and Care Excellence (NICE) is an independent body and responsible for developing its guidelines in accordance with its published methods and processes. NICE expects to publish its final updated guideline in October 2020 with a consultation on draft guidance starting in April 2020.

 

Source: UK House of Commons

Date: March 21, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-03-13/231934/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome: Medical Treatments
--------------------------------------------

Sir Henry Bellingham

To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on issuing an interim warning on the potential dangers of graded exercise therapy (GET) as a treatment for ME, prior to issuing its revised guideline in October 2020. [231934]

Steve Brine

The Department has had no such discussions. The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for developing its guidance in accordance with its published methods and processes. NICE takes into account the best available evidence in determining whether to recommend a treatment.

 

Source: UK House of Commons

Date: March 22, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-03-14/232584/

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome: Education
-----------------------------------

Ruth Cadbury

To ask the Secretary of State for Education, what steps he's taken to support access to schooling for children with Chronic Fatigue Syndrome. [232584]

Nadhim Zahawi

We are clear that all pupils with medical conditions are properly supported in school so that they can play a full and active role in school life, remain healthy, achieve their academic potential and have the same opportunities as any other child.

In September 2014, we introduced the duty to require governing bodies to make arrangements to support their pupils with medical conditions and provided statutory guidance that outlines schools' responsibilities in this area, available at:

https://www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3.

Schools also have duties under the Equality Act 2010 to make reasonable adjustments and not to discriminate against disabled children, including those with 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 long-term health problems at a substantial disadvantage.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-25/236446/

Emma Lewell-Buck

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the effectiveness of support forpeople suffering from myalgic encephalomyelitis in

(a) South Shields and

(b) the North East.

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-25/236488/

Julie Elliott

To ask the Secretary of State for Health and Social Care, what support he plans to provide for myalgic encephalomyelitis services in the North East.

https://www.parliament.uk/business/...s/written-question/Commons/2019-03-25/236489/

Julie Elliott

To ask the Secretary of State for Health and Social Care, what plans he has for the future development of services for people with myalgic encephalomyelitis in the North East.