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UK House of Lords/ House of Commons Questions

Discussion in 'General ME/CFS News' started by Sly Saint, Nov 2, 2017.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
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    Source: UK House of Commons

    Date: March 27, 2019

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

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

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

    [Written Answers]

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

    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. [234156]

    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. [234157]

    Caroline Dinenage

    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 NICE expects to publish its final updated guideline in October 2020 with a consultation on draft guidance starting in April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.
     
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    It is now known that the NHS training for GPs relies on material from a trial that itself concluded to be a null result. This is fact and completely unacceptable. It was hidden and unknown for years. Well, no longer. Training for medical care cannot in good conscience be built on a model that failed in a trial and for which no other reliable evidence can be brought forward.

    I think from other answers that it is the RCGP that is responsible for the content. How can they be challenged on it? This is an enormous ethical and moral failure, to knowingly teach medical professionals a vague and falsified model that failed in practice. Once more reckless and irresponsible.
     
  3. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    @rvallee please see post #278 which shows the Government response to a similar question to yours above.

    Certain “Elves” in the constituency are working (necessarily slowly :ill:) in the background to prepare their MP for his next question........
     
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  4. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
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    Source: UK House of Commons

    Date: March 28, 2019

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

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

    [Written Answers]

    Chronic Fatigue Syndrome: Research
    ----------------------------------

    Nicky Morgan

    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 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.

    Chris Skidmore

    I refer my rt. hon. Friend to the answer I gave to my hon. Friend the Member for North West Norfolk on 20th March 2019 to Question 231931.

    https://www.parliament.uk/business/...s/written-question/Commons/2019-03-13/231931/
     
    Last edited: Apr 9, 2019
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  5. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
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    Source: UK House of Commons

    Date: March 28, 2019

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

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

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

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

    [Written Answers]

    Chronic Fatigue Syndrome: North East
    ------------------------------------

    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 for people suffering from myalgic encephalomyelitis in (a) South Shields and (b) the North East. [236446]

    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. [236488]

    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. [236489]

    Caroline Dinenage

    The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.
     
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  6. MeSci

    MeSci Senior Member (Voting Rights)

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    https://www.parliament.uk/business/...s/written-question/Commons/2019-04-04/240991/

    Sharon Hodgson

    To ask the Secretary of State for Health and Social Care, how much funding the Government has allocated to services used by patients with ME in the North East.

    https://www.parliament.uk/business/...s/written-question/Commons/2019-04-04/240992/

    Sharon Hodgson

    To ask the Secretary of State for Health and Social Care, if he will allocate additional funding to support charities providing direct services to people with ME in the North East.
     
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  7. John Mac

    John Mac Senior Member (Voting Rights)

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    Chris Williamson Labour, Derby North
    To ask the Secretary of State for Health and Social Care, if he make an assessment of the potential merits of ring-fencing funding for high-quality ME research as the Government has done for dementia and brain cancer.



    Caroline Dinenage Minister of State (Department of Health and Social Care)

    The Department for Health and Social Care funds research through the National Institute for Health Research (NIHR). The Government also supports research relating to myalgic encephalomyelitis (ME) through the Medical Research Council (MRC), part of the Department for Business, Environment and Industrial Strategy partner organisation, UK Research and Innovation. Both the NIHR and the MRC welcome 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 to the NIHR and the MRC 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.

    Research into chronic fatigue syndrome CFS/ME is an area of strategic importance for the MRC and the only medical condition for which the MRC has a dedicated Highlight Notice which identifies areas where proposals are particularly encouraged. These include proposals which have a focus on the underpinning mechanisms of ME/CFS, with priority areas including immune dysregulation; pain; improved sub-phenotyping and stratification of ME/CFS; and mechanisms of ME/CFS in children and young people.

    https://www.theyworkforyou.com/wrans/?id=2019-04-03.240545.h&s=dementia
     
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  8. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
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    Source: UK House of Commons

    Date: April 12, 2019

    URL:
    https://www.parliament.uk/business/...s/written-question/Commons/2019-04-04/240991/

    https://www.parliament.uk/business/...s/written-question/Commons/2019-04-04/240992/

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

    [Written Answers]

    Chronic Fatigue Syndrome: North East
    ------------------------------------

    Sharon Hodgson

    To ask the Secretary of State for Health and Social Care, how much funding the Government has allocated to services used by patients with ME in the North East. [240991]

    To ask the Secretary of State for Health and Social Care, if he will allocate additional funding to support charities providing direct services to people with ME in the North East. [240992]

    Seema Kennedy

    This data is not available. Services for people with myalgic encephalomyelitis are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and that they address any shortfalls in provision. Where appropriate, this will include commissioning services provided by voluntary sector organisations.
     
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  9. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
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    Source: UK House of Commons

    Date: April 11, 2019

    URL:
    https://www.parliament.uk/business/...s/written-question/Commons/2019-04-08/242027/

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

    [Written Answers]

    Chronic Fatigue Syndrome: North West
    ------------------------------------

    Angela Eagle

    To ask the Secretary of State for Health and Social Care, how much funding the Government has allocated to services used by patients with ME in the North West in each year for which information is available.
    [242027]

    Seema Kennedy

    This data is not available. Services for people with myalgic encephalomyelitis are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and that they address any shortfalls in provision.
     
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  10. MeSci

    MeSci Senior Member (Voting Rights)

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  11. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    1,729
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    Location:
    Cornwall, UK
    Source: UK House of Commons

    Date: May 3, 2019

    URL:
    https://www.parliament.uk/business/...s/written-question/Commons/2019-04-25/247626/

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

    [Written Answers]

    Chronic Fatigue Syndrome: Greater London
    ----------------------------------------

    Andrew Rosindell

    To ask the Secretary of State for Health and Social Care, if he will allocate additional funding to support charities providing direct services to people with ME in London. [247626]

    Seema Kennedy

    Services for people with myalgic encephalomyelitis; including those provided by the voluntary sector, are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and that they address any shortfalls in provision.
     
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  12. MeSci

    MeSci Senior Member (Voting Rights)

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    https://www.parliament.uk/business/...ts/written-question/Lords/2019-05-21/HL15894/

    The Countess of Mar

    To ask Her Majesty's Government what processes are in place to safeguard children with chronic fatigue syndrome and other disorders whose parents have enrolled them on Lightning Process courses; and what evaluation has been undertaken of the (1) benefits, and (2) harms, to those children who have participated in such courses.
     
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  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    From 2012, but a reminder that the MRC were aware of the refusal to release PACE's prespecified outcomes back then, and took no action:

    https://www.theyworkforyou.com/wrans/?id=2012-11-26a.15.0&s=chronic+fatigue+syndrome#g15.2

    [​IMG] The Countess of Mar Deputy Speaker (Lords)
    To ask Her Majesty's Government whether the refusal by researchers to publish trial data on recovery rates and positive outcome rates specified in their application for grant funding provided by the Department of Health, the Medical Research Council, the Scottish Office and the Department for Work and Pensions for "Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial" contravenes the agreement the researchers entered into when the award was made.



    Lord Marland The Parliamentary Under-Secretary of State for Business, Innovation and Skills
    The PACE trial: A Randomised Controlled Trial of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome, was funded by a Medical Research Council (MRC) grant to Queen Mary, University of London.

    While the MRC strongly encourages the publication and dissemination of the findings of all MRC-funded research it does not require the publication of underlying research data. As an MRC grant, the study was subject to the RCUK (Research Council UK) and MRC terms and conditions; no additional requirements around publication were specified by the other funders of the study.

    The findings of the PACE study have been reported in The Lancet, in March 2011 (published online in February 2011) and in PLOS ONE in August 2012. These papers included the results of analyses of positive outcome rates.

    The MRC is aware that Queen Mary University London received a request under the Freedom of Information Act relating to data on recovery rates and positive outcome rates which relates to an analysis initially planned by the investigators in the original protocol for the study and which was published in 2007. It is understood that the request was declined by the university as this originally planned analysis was superseded and therefore not undertaken during the study.

    edit: Rather than concern about the spinning of results, the MRC was providing media training for the PACE researchers with the SMC:

    http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf
     
    Last edited: May 26, 2019
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  14. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
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    Source: UK House of Lords

    Date: June 5, 2019

    URL:
    https://www.parliament.uk/business/...ts/written-question/Lords/2019-05-21/HL15894/

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

    [Written Answers]

    Medical Treatments: Children
    ----------------------------

    The Countess of Mar

    To ask Her Majesty's Government what processes are in place to safeguard children with chronic fatigue syndrome and other disorders whose parents have enrolled them on Lightning Process courses; and what evaluation has been undertaken of the (1) benefits, and (2) harms, to those children who have participated in such courses. [HL15894]

    Baroness Blackwood of North Oxford

    The Lightning Process (LP) is not offered as a part of the chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) standard treatments on the National Health Service. Subject to the nature of the safeguarding concerns, issues should be directed to the relevant professional regulator, should the practitioner be a member of a registered profession; the local authority (trading standards office or children's service), if false claims are being made about the effectiveness of the treatment or welfare of a child is a concern; or the police, if a crime is involved.

    The LP involves a course of three half-days of training aiming to teach participants how to use their brain to improve their body's health.

    A randomised controlled trial with 100 adolescents aged 12-18 was undertaken by researchers in Bristol. Participants were randomised into two groups: those who received standard CFS/ME treatment and those who received the standard treatment plus the LP.

    Researchers found those who received the LP had better physical function, were less tired and less anxious after six months. At 12 months, they had further improvement in physical function, and improved depression scores and school attendance. This research trial had several limitations as set out in the peer reviewed journal article. This was a very small trial and so it would need to be repeated in a much larger group to demonstrate more generalisable findings. Participants were not blinded so their self-reported outcomes might have been biased, for example participants may have been more likely to report positive outcomes because they knew they were getting additional therapy in the LP group. Of all those eligible to participate in the trial, fewer than 30% agreed to take part. Participants in the trial did not have any serious adverse events attributable to either LP or usual care. LP therapy was given in addition to the usual CFS/ME care as a no-treatment control group was not deemed ethical, therefore it cannot be suggested as a replacement for current specialised medical care.

    Independent ethical review ensures that participant safety is at the centre of all research. In the United Kingdom, review by an ethics committee is one of a series of safeguards intended to protect the people taking part in the research. The operating procedure for trials in the UK has inbuilt safeguards designed to protect patients from harm in the event an intervention is ineffective or potentially harmful.

    Participants are free to withdraw from a study at any time.
     
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  15. Andy

    Andy Committee Member & Outreach

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  16. ladycatlover

    ladycatlover Moderator Staff Member

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    Yet more free publicity for the damn SMILE trial. :mad: And I seem to remember that it was quite difficult to leave the trial - phone calls at home prompting filling in questionnaires.
     
  17. chrisb

    chrisb Senior Member (Voting Rights)

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    I am losing track of all this. Does this mean that the obscure placement of the caveat has led to the misleading of Parliament?
     
  18. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Presumably yes. But first and foremost I think it means that ethics committees have never erred, nor will they err to all eternity.
     
    Last edited: Jun 6, 2019
  19. ladycatlover

    ladycatlover Moderator Staff Member

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    Unless they're psychological interventions where there's no way to officially report harm from an intervention. No yellow card.
     
  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    I worry that the more people/networks who would be embarrassed by acknowledgement of the problems with SMILE, the less likely it is we're going to be able to make progress. I think that sort of dynamic has played an important role around PACE.
     

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