UK House of Lords/ House of Commons Questions

I can gloss over the evasive non-responses of these politicians, and forget that it's reasonable to expect far more from them. My standards are now so low it's hard for me to ever be outraged!

 

Source: UK House of Commons

Date: February 19, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-02-14/221646/

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

[Written Answers]

Microbiology
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Chris Ruane

To ask the Secretary of State for Health and Social Care, what assessment he has made of the use of microbiota assessments in the diagnosis of (a) ME/ CFS and (b) fibromyalgia. [221646]

Caroline Dinenage

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 diagnosis for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 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.

Diagnosing both ME/CFS and fibromyalgia can be difficult as there is no specific diagnostic test that can be used, and the symptoms can vary from person to person. Diagnosis is usually made by taking a medical history, checking symptoms and carrying out a physical examination.

Other tests may be used to rule out medical conditions with similar symptoms. The NIHR has funded projects on ME/CFS and fibromyalgia totalling 4.3 million pounds in the last five years (2.5 million pounds for ME/CFS and 1.8 million pounds for fibromyalgia) some of which relate to educating general practitioners about diagnosis.

 

really? what might that be then?

eta: Nigel Speight on the ME show says he could teach someone how to make an ME diagnosis in ten minutes............

 

There really needs to be a pushback on those misleading numbers. No matter what way they cut it, the psychosocial "research" is psychological research, not medical. It doesn't make any difference that it was funded by the MRC, it is not medical research. Spending money on BS research that is not medically relevant does not qualify as medical research funding, full stop.

They can blather all they want about the mind-body crap, psychological studies on coping with cancer does not qualify as cancer research funding, it's a completely different purpose and track. It would never be included in cancer research funding (unless British medicine has truly, completely lost the plot), it would be a separate item related to but not qualifying as medical research. It is not at all the same as biomedical research, FFS.

 

Answered by: Chris Skidmore
Answered on: 22 February 2019

Since 2009/10, the Medical Research Council (MRC) has received 32 research proposals relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), seven of which have been funded.

The MRC supports research in response to proposals from the research community. High quality applications on any aspect of human health are always welcomed and awards are made according to their scientific quality and importance to human health.

Answered by: Caroline Dinenage
Answered on: 22 February 2019

We do not hold the information requested on funding for myalgic encephalitis/chronic fatigue syndrome (ME/CFS) research according to biopsychological, biopsychosocial and biomedical research.

The following table shows information provided by the National Institute for Health Research (NIHR) on Departmental programme research funding for ME/CFS, per year, since financial year 2010-11. 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 £
2010-11 189,438
2011-12 381,874
2012-13 501,461
2013-14 561,950
2014-15 426,055
2015-16 475,676
2016-17 554,785
2017-18 464,902

The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS; 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.

Answered by: Caroline Dinenage
Answered on: 22 February 2019

We do not hold the information requested on funding for myalgic encephalitis/chronic fatigue syndrome (ME/CFS) research according to biopsychological, biopsychosocial and biomedical research.

The following table shows information provided by the National Institute for Health Research (NIHR) on Departmental programme research funding for ME/CFS, per year, since financial year 2010-11. Further information on this research is available through the NIHR Journals Library at the following link:

Financial Year £
2010-11 189,438
2011-12 381,874
2012-13 501,461
2013-14 561,950
2014-15 426,055
2015-16 475,676
2016-17 554,785
2017-18 464,902
https://www.journalslibrary.nihr.ac.uk/programmes/

 

Though I agree in principle with what you’re saying, I’m not sure hard divisions between fields of research for an illness are common. If the Medical Research Council fund it, it will generally be considered medical research.

 

Its a very low sum anyway. I think that most Of the £2.5m MRC funding quoted is biomedical research though I would love to hear if anyone knows of the seventh beneficiary?

And it doesn’t matter if the NIHR cAn point to the odd hundred thousand every year, although i think that is Much more likely to be cbt GET stuff knowing that Crawley and Collins have been given some. Anyone who knows the amount of money other illnesses have to plough in to get progress knows that with this investment level we are hugely disadvantaged when at a charity level we are similarly lacking too. ME is also appearing not just difficult to pin down but very complicated too which means it needs many systems investigated.

Whet I don’t understand is how those happily providing thefigures see no problem and why we never get beyond this superficial brushIng off with same old

 

If that application figure includes the 2011 ring-fenced funding granted ones, then that really Is low funding achievement because it would mean just two outside those successful for that funding call have been funded out of about 20-25 in the past ten years.

 

I would be almost certain that the figures from 2009-10 do include the ring-fenced funding/studies.

 

These are presumably the 2 others studies:

MR/K020269/1 Research Grant 01/10/2013 31/03/2016 Investigating the epidemiology of CFS/ME in children using the ALSPAC cohort. University of Bristol http://gtr.ukri.org/projects?ref=MR/K020269/1 Dr Esther Crawley £296

MR/M02363X/1 Research Grant 01/10/2015 30/09/2018 A Unified Mechanism for Functional Neurological Symptoms St George's University of London http://gtr.ukri.org/projects?ref=MR/M02363X/1 Dr M Edwards £662

See:
https://mrc.ukri.org/documents/xls-...me-research-projects-from-200405-to-201617-k/
https://mrc.ukri.org/documents/xls-...fsme-research-projects-from-200405-to-201617/

 

This represents a 22% acceptance rate, which is better than the average as far as I'm aware.

One could complain that the figures include the ring-fenced funding which might be misleading but one would have expected a lot of applications to go in for that.

Unfortunately, it suggests that a lack of applications continues to be an issue in this field.

 

Thank you @Dolphin , so yet another MRC funding coming under CFS/ME which is actually chronic fatigue to add to the oxford fatigue studies and the sjogrens one. I don’t class that as biomedical research, or ME RESEARCH, the Crawley one, so it’s good to know that for figures when I write my emails.
Isn’t it the case that the functional disorders study is actually two or three separate ones, part epilepsy done separately or is it fair to include CFS as that 600k figure because they’re together for comparison?

Crawley has hoovered up a tidy sum from various quarters hasn’t she? This ^^^, FITNET, MEGANTA, SMILE

 

--- Old ---

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-18/222673/

Angela Crawley

To ask the Secretary of State for Health and Social Care, whether he plans to meet with fibromyalgia charities and organisations.

--- New ---

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-25/225510/

Jim Shannon

To ask the Secretary of State for Health and Social Care, whether he has plans to classify fibromyalgia as a disability.

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-25/225514/

Jim Shannon

To ask the Secretary of State for Health and Social Care, what estimate he has made of the number of people with serious fatigue syndrome in each of the last five years.

 

Source: UK House of Commons

Date: February 26, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-02-18/222673/

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

[Written Answers]

Angela Crawley

To ask the Secretary of State for Health and Social Care, whether he plans to meet with fibromyalgia charities and organisations. [222673]

Steve Brine

Ministers at the Department regularly meet with charities and organisations to discuss many issues. However there are no current plans to meet with fibromyalgia charities and organisations.

 

https://www.parliament.uk/business/...s/written-question/Commons/2019-02-27/226750/

Ben Bradley

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with fibromyalgia.

 

Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)
To ask the Secretary of State for Health and Social Care, what estimate he has made of the number of people with serious fatigue syndrome in each of the last five years.

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• Hansard source (Citation: HC Deb, 5 March 2019, cW)

Steve Brine The Parliamentary Under-Secretary for Health and Social Care
No estimate has been made. Departmental officials do not recognise the diagnosis term “serious fatigue syndrome”.


woops.

@Keela Too

 

Source: UK House of Commons

Date: March 4, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-02-25/225510/

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

[Written Answers]

Fibromyalgia
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Jim Shannon

To ask the Minister for Women and Equalities, whether he has plans to classify fibromyalgia as a disability. [225510]

Victoria Atkins

We believe that listing specific conditions would not help people with hard to diagnose illnesses (as is currently often the case with fibromyalgia), as doing so would make protection dependent upon a successful diagnosis rather than the immediate impact of the illness on a person's life.

The Equality Act 2010 is the principal means through which disabled people are protected from discrimination in Great Britain but does not, except in a few specific instances, specify conditions that may fall within the definition of disability. This is because in most cases, it is the impact on the person's life that is the qualifying criteria rather than the condition itself.

The definition set out in the Act means that any person with a physical or mental impairment that falls within this definition will already be protected as having a disability, which may apply to many of those with fibromyalgia.

 

Source: UK House of Commons

Date: March 7, 2019

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2019-02-27/226750/

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

[Written Answers]

Fibromyalgia
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Ben Bradley

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with fibromyalgia. [226750]

Steve Brine

The Department is committed to making sure people with long term conditions receive the personalised care and support they need.

As set out in the NHS Long Term Plan, published on 7 January 2019, NHS England is taking action in range of areas to improve the care treatment and support provided to people with neurological conditions including rolling out the NHS Comprehensive Model of Personalised Care across the
country, reaching 2.5 million people by 2023/24.

 

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

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.

 

odd question
(great name tho' )