UK House of Lords/ House of Commons Questions

Sly Saint said:
House of Commons question on ME/cfs (13.09.2018 )


eta: good to see more MPs chiming in with asking for a full debate in the chamber of the HofC
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Poor briefing of the Minister by Civil Servants........ You’d think they’d be aware we’ve already had 2 Westminster Hall debates this year it’s not rocket science. This question needs asking again tho referring to the Westminster Hall debates and explicitly saying want a Commons débate. If you ask a general question you get waffle general answers.
 
MeSci said:
https://www.parliament.uk/business/...s/written-question/Commons/2018-09-11/173506/

Laurence Robertson

To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the adequacy of funding for research into the causes of ME; and if he will make a statement.
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Interesting to see Parliamentary responses to the two 4 September questions were answered on 11 & 12 September (despite waffle answer) and, yet another question has already been asked?

Am I being hopeful that there is some co-ordinated question asking going on by our MP’s, timed by the supporters of the ME Debate???

Alison Thewliss is a Glasgow MP (so is C Monaghan) and Laurence Robertson is a Gloucestershire MP (as is A Chalk)......just saying......
 
It's M.E. Linda said:
Interesting to see Parliamentary responses to the two 4 September questions were answered on 11 & 12 September (despite waffle answer) and, yet another question has already been asked?

Am I being hopeful that there is some co-ordinated question asking going on by our MP’s, timed by the supporters of the ME Debate???

Alison Thewliss is a Glasgow MP (so is C Monaghan) and Laurence Robertson is a Gloucestershire MP (as is A Chalk)......just saying......
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Quite possible. I think “on board” MPs influencing other MPs is going to be important. If your MP is sceptical or sittting on the fence and there’s some other MP from the same party they are likely to be in contact with it is worth suggesting they talk so the on board MP can help with persuasion.
 
NelliePledge said:
Quite possible. I think “on board” MPs influencing other MPs is going to be important. If your MP is sceptical or sittting on the fence and there’s some other MP from the same party they are likely to be in contact with it is worth suggesting they talk so the on board MP can help with persuasion.
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I have helped with letter writing (copy, paste, improve, copy....repeat) for friends in our county. The suggestion that a ‘new’ MP can discuss the debate and relevant matters with another local MP of the same party, is extremely useful.
 
It's M.E. Linda said:
Just checked the link and no reply yet.......hopefully they are giving the question serious thought.
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reply to this question (or non-reply)

"
Caroline Dinenage Minister of State (Department of Health and Social Care)
The Department’s National Institute for Health Research (NIHR) recognises that myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating condition.

Since 2011, the NIHR has provided £3.37 million of programmes funding for projects and training on CFS/ME. Several of the NIHR’s Biomedical Research Centres also carry out research into CFS/ME, with project funding provided by the Medical Research Council and CFS/ME charities.

The NIHR welcomes funding applications for research into any aspect of human health, including ME; 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."
 
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-10/177774/

Wera Hobhouse

To ask the Secretary of State for Health and Social Care, if he will take steps to ensure the maintenance of funding for research into the field of fibromyalgia syndrome and its symptoms.

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-10/177775/

Wera Hobhouse

To ask the Secretary of State for Health and Social Care, if his Department will review the clinical guidelines on the treatment of fibromyalgia syndrome to ensure clearer treatment pathways for people with that syndrome.

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-10/177776/

Wera Hobhouse

To ask the Secretary of State for Health and Social Care, what steps his Department will take to raise awareness of the condition of fibromyalgia syndrome.

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-10/177780/

Wera Hobhouse

To ask the Secretary of State for Health and Social Care, whether his Department has plans to place fibromyalgia in a distinct medical category of its own to facilitate research.
 
Source: UK House of Commons

Date: October 15, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-10/177774/

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

[Written Answers]

Fibromyalgia
------------

Wera Hobhouse

To ask the Secretary of State for Health and Social Care, if he will take steps to ensure the maintenance of funding for research into the field of fibromyalgia syndrome and its symptoms [177774].

Caroline Dinenage

The Department's National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including fibromyalgia; 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. NIHR support for fibromyalgia research over the last five years includes 1.8 million pounds funding for research projects; 0.6 million pounds funding for clinical trials through the NIHR Clinical Research Network; and the NIHR has managed infrastructure supporting fibromyalgia research.

Information on individual projects funded by the NIHR can be found at the following link:
https://www.journalslibrary.nihr.ac.uk/programmes/
 
Source: UK House of Commons

Date: October 15, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-10/177775/

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-10/177776/

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

[Written Answers]

Fibromyalgia
------------

Wera Hobhouse

To ask the Secretary of State for Health and Social Care, if his Department will review the clinical guidelines on the treatment of fibromyalgia syndrome to ensure clearer treatment pathways for people with that syndrome [177775].

To ask the Secretary of State for Health and Social Care, what steps his Department will take to raise awareness of the condition of fibromyalgia syndrome [177776].

Steve Brine

The Department is not directly responsible for developing or reviewing clinical guidance for identification and management of diseases and disorders. The National Institute for Health and Care Excellence was established by the Government to develop evidence based best practice for the National Health Service. Other organisations, such as the clinical Royal Colleges, and charitable organisations also convene expert groups to develop guidance for health professionals.

A range of support exists to help general practitioners (GPs) identify and manage fibromyalgia in primary care. This includes an e-learning course developed by the Royal College of GPs and Arthritis Research UK on musculoskeletal care, including fibromyalgia, and a medical guide developed by the Fibromyalgia Association UK (FMUK) for health
professionals.

People with fibromyalgia can usually be managed through routine access to primary or second care provide via a GP or consultant. Treatment will depend on the severity of a patient's condition, but may include pain relieving medication; physiotherapy; dietary and exercise advice; counselling or cognitive behavioural therapy. For patients whose pain cannot be adequately controlled by routine access to NHS services, a referral may be made to a specialist pain service or specialist fibromyalgia clinic, such the Royal National Hospital for Rheumatic Diseases in Bath, subject to their having met certain criteria.

Information for the public can be found on the NHS website and is also available in a patient's information guide produced by FMUK. The medical guide, patient information booklet and NHS choice webpage on fibromyalgia can be found at the following links:

http://www.fmauk.org/dmdocuments/Medical Pack.pdf

http://www.fmauk.org/information-packs-mainmenu-58/booklet-mainmenu-135/490-patient-booklet

http://www.nhs.uk/conditions/fibromyalgia/
 
Source: UK House of Commons

Date: October 17, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-10/177780/

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

[Written Answers]

Fibromyalgia
------------

Wera Hobhouse

To ask the Secretary of State for Health and Social Care, whether his Department has plans to place fibromyalgia in a distinct medical category of its own to facilitate research [177780].

Steve Brine

Classification of diseases and disorders is achieved through international clinical and scientific consensus.

The current version of the World Health Organization's International Classification of Diseases (ICD10) includes fibromyalgia under 'Diseases of the musculoskeletal system and connective tissue' in the category 'Other soft tissue disorders, not elsewhere classified'. ICD-11, which will be presented at the World Health Assembly in May 2019 for adoption by member states, includes fibromyalgia under 'General symptoms, signs or clinical findings' in the category of 'chronic widespread pain'.

The Department's National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including fibromyalgia. 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. NIHR support for fibromyalgia research over the last five years includes 1.8 million pounds funding for research projects and 0.6 million pounds funding for clinical trials through the NIHR Clinical Research Network. The NIHR has also managed infrastructure supporting fibromyalgia research. Information on individual projects funded by the NIHR can be found at the following link:

http://www.journalslibrary.nihr.ac.uk/programmes/
 
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181584/

Jonathan Ashworth

To ask the Secretary of State for Health and Social Care, how much his Department has spent on research into myalgic encephalomyelitis/chronic fatigue syndrome over the past five financial years.

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181651/

Jonathan Ashworth

To ask the Secretary of State for Health and Social Care, what pharmacological treatments are available to people living with myalgic encephalomyelitis/chronic fatigue syndrome.

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181652/

Jonathan Ashworth

To ask the Secretary of State for Health and Social Care, what support his Department provides to people in the UK who have myalgic encephalomyelitis/chronic fatigue syndrome.

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181653/

Jonathan Ashworth

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the prevalence of Myalgic Encephalopathy/Chronic Fatigue Syndrome in England.
 
MeSci said:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181584/

Jonathan Ashworth

To ask the Secretary of State for Health and Social Care, how much his Department has spent on research into myalgic encephalomyelitis/chronic fatigue syndrome over the past five financial years.

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181651/

Jonathan Ashworth

To ask the Secretary of State for Health and Social Care, what pharmacological treatments are available to people living with myalgic encephalomyelitis/chronic fatigue syndrome.

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181652/

Jonathan Ashworth

To ask the Secretary of State for Health and Social Care, what support his Department provides to people in the UK who have myalgic encephalomyelitis/chronic fatigue syndrome.

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181653/

Jonathan Ashworth

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the prevalence of Myalgic Encephalopathy/Chronic Fatigue Syndrome in England.
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worth noting that he is the shadow health secretary
 
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-17/180813/

Angela Crawley

To ask the Secretary of State for Health and Social Care, with reference to the oral contribution of the Parliamentary Under-Secretary of State for Health and Social Care of 21 June 2018, Official Report, column 232WH, on ME: Treatment and Research, what steps his Department has taken to collaborate with the Department for Work and Pensions on guidance for healthcare professionals for the assessment of people with ME.
 
(response to the above)

Source: UK House of Commons

Date: October 25, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-17/180813/

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

[Written Answers]

Chronic Fatigue Syndrome: Social Security Benefits
--------------------------------------------------

Angela Crawley

To ask the Secretary of State for Health and Social Care, with reference to the oral contribution of the Parliamentary Under-Secretary of State for Health and Social Care of 21 June 2018, Official Report, column 232WH, on ME: Treatment and Research, what steps his Department has taken to collaborate with the Department for Work and Pensions on guidance for healthcare professionals for the assessment of people with ME [180813].

Steve Brine

The Department is not directly responsible for producing training and clinical guidance for healthcare professionals. Such guidance is a matter for organisations such as National Institute for Health and Care Excellence or clinical professional organisations such as the Royal College of Physicians.
 
MeSci said:
(response to the above)

Source: UK House of Commons

Date: October 25, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-17/180813/

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

[Written Answers]

Chronic Fatigue Syndrome: Social Security Benefits
--------------------------------------------------

Angela Crawley

To ask the Secretary of State for Health and Social Care, with reference to the oral contribution of the Parliamentary Under-Secretary of State for Health and Social Care of 21 June 2018, Official Report, column 232WH, on ME: Treatment and Research, what steps his Department has taken to collaborate with the Department for Work and Pensions on guidance for healthcare professionals for the assessment of people with ME [180813].

Steve Brine

The Department is not directly responsible for producing training and clinical guidance for healthcare professionals. Such guidance is a matter for organisations such as National Institute for Health and Care Excellence or clinical professional organisations such as the Royal College of Physicians.
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So how are these professional organisations held accountable for their performance
 
Jon Ashworth Shadow Secretary of State for Health
To ask the Secretary of State for Health and Social Care, how much his Department has spent on research into myalgic encephalomyelitis/chronic fatigue syndrome over the past five financial years.

Caroline Dinenage Minister of State (Department of Health and Social Care)
The following table shows information provided by the National Institute for Health Research (NIHR) on Departmental programme research funding for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), over each of the last five years. Further information on this research is available through the NIHR Journals Library at the following link:

https://www.journalslibrary.nihr.ac.uk/programmes/

Financial Year £

2013-14 561,950

2014-15 426,055

2015-16 475,676

2016-17 554,785

2017-18 464,902

The NIHR recognises that CFS/ME is a debilitating condition and is speaking with the United Kingdom CFS/ME Research Collaborative and patient representatives about how best to support a joined up approach to high quality research into this complex disorder. The NIHR welcomes funding applications for research into any aspect of human health, including CFS/ME; 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."

https://www.theyworkforyou.com/wrans/?id=2018-10-19.181584.h
 
Last edited by a moderator:
The question asked related to "research", not scientific biomedical research so it shows the NIHR spending on Crawley and the rest of the BPS MOB (Monstrous Oppressive Bullies).

If you go to the link you can say whether or not the answer provided answers the question.
I would not have asked that question, but I guess it is useful in showing how much goes on Non-science, to then be compared with Actual science.
 
Source: UK House of Commons

Date: October 29, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181629/

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

[Written Answers]

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

Dr Paul Williams

To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the effect of prescription charges on health outcomes [181629].

Steve Brine

No such assessment has been undertaken.
 
Source: UK House of Commons

Date: October 29, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181651/

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181652/

https://www.parliament.uk/business/...s/written-question/Commons/2018-10-19/181653/

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

[Written Answers]

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

Jonathan Ashworth

To ask the Secretary of State for Health and Social Care, what pharmacological treatments are available to people living with myalgic encephalomyelitis/chronic fatigue syndrome [181651].

To ask the Secretary of State for Health and Social Care, what support his Department provides to people in the UK who have myalgic encephalomyelitis/chronic fatigue syndrome [181652].

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the prevalence of myalgic encephalopathy/chronic fatigue syndrome in England [181652].

Steve Brine

The National Institute for Health and Care Excellence (NICE) recommends treatments which have the clearest clinical evidence of benefit. There is no known pharmacological treatment or cure for myalgic encephalopathy/chronic fatigue (CFS/ME); however, the guidance is clear that there is no one form of treatment to suit every patient. People
with CFS/ME should have the opportunity to make informed decisions about their care and treatment should be provided in line with their preferences.

The NICE guidance also provides clinical guidance on best practice which is used to support the local National Health Service shape services to support people with CFS/MS. The commissioning of services for people with CFS/ME is a local matter.

Overall evidence suggests that CFS/ME has a population prevalence of at least 0.2-0.4%. This would mean that a general practice with 10,000 patients is likely to include up to 40 people with CFS/ME. Estimates are based on extrapolations from other countries.

Further information on CFS/ME can be found via the following websites:

http://www.nice.org.uk/guidance/cg53

http://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

http://www.meassociation.org.uk/about/what-is-mecfs/
 
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