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Questions to Secretary of State for Health 4.9.17

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
To ask the Secretary of State for Health, what steps are being taken to
improve definitions of myalgic encephalomyelitis for diagnosis. [7179]
URL:
http://www.parliament.uk/business/p...nts/written-question/Commons/2017-09-04/7179/

To ask the Secretary of State for Health, what training is provided for
doctors to help them treat patients with myalgic encephalomyelitis.
[7180]
URL:
http://www.parliament.uk/business/p...nts/written-question/Commons/2017-09-04/7180/

To ask the Secretary of State for Health, how many patients received NHS
treatment for myalgic encephalomyelitis in the last 12 months. [7181]
URL:
http://www.parliament.uk/business/p...nts/written-question/Commons/2017-09-04/7181/

To ask the Secretary of State for Health, how much funding is provided
each year for research into myalgic encephalomyelitis. [7182]
URL:
http://www.parliament.uk/business/p...nts/written-question/Commons/2017-09-04/7182/

To ask the Secretary of State for Health, what plans he has to update
NICE guidelines for the treatment of myalgic encephalomyelitis. [7593]
URL:
http://www.parliament.uk/business/p...nts/written-question/Commons/2017-09-04/7593/

To ask the Secretary of State for Health, what steps his Department is
taking to provide doctors with up-to-date information on the treatment
of patients with myalgic encephalomyelitis. [7594]
URL:
http://www.parliament.uk/business/p...nts/written-question/Commons/2017-09-04/7594/

To ask the Secretary of State for Health, what assessment he has made of
guidelines on myalgic encephalomyelitis published by health authorities
in (a) Canada and (b) other countries. [7595]
URL:
http://www.parliament.uk/business/p...nts/written-question/Commons/2017-09-04/7595/
 

NelliePledge

Senior Member
Messages
807
does anyone know what Daniel Kawczynski s interest in ME is? interesting that he is a tory and prepared to ask these questions - in some ways better having the questions coming from someone in the government party as he will have opportunities for engagement with ministers that the opposition wouldnt have- if he is prepared to follow up when the replies come back as the usual platitudes and weasel words
 

slysaint

Senior Member
Messages
2,125
upload_2017-9-7_18-55-33.jpeg

upload_2017-9-7_18-55-57.jpeg
 

slysaint

Senior Member
Messages
2,125
Reply:
"Steve Brine The Parliamentary Under-Secretary of State for Health
Information on the exact number of patients receiving treatment for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is not collected. The National Institute for Health and Care Excellence (NICE) clinical guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children estimates that the annual prevalence is approximately 4,000 cases per million of the population.

The NICE clinical guideline set outs best practice for clinicians on the diagnosis, treatment, care and support of people with the condition and supports commissioners to to plan services for local populations. NICE routinely reviews its guidance to ensure it reflects the latest available evidence, including international evidence. In spring 2017, NICE reviewed the CFS/ME guideline to assess whether new research on CCFS/ME would impact on the current guideline recommendations. This included looking at new evidence concerning diagnostic criteria. Having assessed the evidence, NICE published its provisional recommendation not to update the NICE guideline for consultation on 10 July for a period of two weeks. NICE’s final recommendation is expected in October 2017.

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 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 National Health Service and is a key part of general practitioner’s (GPs) qualifying exams.

Once fully qualified, clinicians are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This activity should include taking account of new research and developments in guidance, such as that produced by NICE.

The Department has made no assessment has been made of guidelines on CFS/ME published by health authorities in Canada and other countries."
 

NelliePledge

Senior Member
Messages
807
Reply:
"Steve Brine The Parliamentary Under-Secretary of State for Health
Information on the exact number of patients receiving treatment for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is not collected. The National Institute for Health and Care Excellence (NICE) clinical guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children estimates that the annual prevalence is approximately 4,000 cases per million of the population.

The NICE clinical guideline set outs best practice for clinicians on the diagnosis, treatment, care and support of people with the condition and supports commissioners to to plan services for local populations. NICE routinely reviews its guidance to ensure it reflects the latest available evidence, including international evidence. In spring 2017, NICE reviewed the CFS/ME guideline to assess whether new research on CCFS/ME would impact on the current guideline recommendations. This included looking at new evidence concerning diagnostic criteria. Having assessed the evidence, NICE published its provisional recommendation not to update the NICE guideline for consultation on 10 July for a period of two weeks. NICE’s final recommendation is expected in October 2017.

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 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 National Health Service and is a key part of general practitioner’s (GPs) qualifying exams.

Once fully qualified, clinicians are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This activity should include taking account of new research and developments in guidance, such as that produced by NICE.

The Department has made no assessment has been made of guidelines on CFS/ME published by health authorities in Canada and other countries."
thin response that fails to even acknowledge the question about research spending - will be interesting to see the MPs level of interest/commitment if he's dissatisfied with the reply and is prepared to ask follow up questions
 

NelliePledge

Senior Member
Messages
807
for some reason the research question was answered separately............


The Department’s National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including myalgic encephalomyelitis (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. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity. Currently, the NIHR is funding one project on ME; a large randomised controlled trial of an internet-based cognitive behavioural therapy for children aged 11-17 years. It is being led by Professor Esther Crawley at Bristol University and is funded for £994,430. It began in May 2016 and further information on this, and all NIHR funded projects, can be found at:

https://www.journalslibrary.nihr.ac.uk/programmes/hta/14192109/#/summary-of-research
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
for some reason the research question was answered separately............


The Department’s National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including myalgic encephalomyelitis (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. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity. Currently, the NIHR is funding one project on ME; a large randomised controlled trial of an internet-based cognitive behavioural therapy for children aged 11-17 years. It is being led by Professor Esther Crawley at Bristol University and is funded for £994,430. It began in May 2016 and further information on this, and all NIHR funded projects, can be found at:

https://www.journalslibrary.nihr.ac.uk/programmes/hta/14192109/#/summary-of-research

The above reply came from Jackie Doyle-Price at the Department of Health: http://www.parliament.uk/business/p...nts/written-question/Commons/2017-09-04/7182/
 

Esther12

Senior Member
Messages
13,774

Thanks. Not any details there, and I didn't see any mention of CFS in that guide to care of people with neurological conditions. Seems like a bit of a dead end.