UK House of Lords/ House of Commons Questions

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

  1. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    it has been the brazen 2 tier efforts for m.e compared to long covid - ie don’t you worry, ofcourse we are taking long covid seriously and as proof of this ww point to the fact we have invested this much… for This program including clinical trials etc that has, to put it mildly taken the biscuit. .
     
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  2. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

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    [​IMG]Ben Maguire Liberal Democrat Shadow Attorney General
    To ask the Secretary of State for Health and Social Care, if his Department will make an assessment of the potential merits of taking additional steps to improve the quality of life of people living with Myalgic Encephalomyelitis.

    [​IMG]Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
    We are committed to improving care and support for people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.

    We aim to publish the final ME/CFS delivery plan by the end of June 2025, where one of the key themes is bettering the lives of those living with this debilitating disease, as well as boosting research, and improving attitudes and education.

    The responses to the interim delivery plan consultation, along with continued close engagement with the Government, National Health Service and external stakeholders, will inform the development of the final ME/CFS delivery plan, which will include actions to improve quality of life.
     
  3. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

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    [​IMG]Munira Wilson Liberal Democrat Spokesperson (Education, Children and Families)
    To ask the Secretary of State for Health and Social Care, what steps he is taking to support people impacted by long covid in Twickenham constituency.

    [​IMG]Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
    Commissioning, service provision and staffing of long COVID services is the responsibility of local integrated care boards.

    General practitioners (GPs) continue to act as the primary point of contact to ensure patients receive the appropriate advice and care. Patients experiencing symptoms of long COVID are advised to seek support from their GP in the usual way.

    A directory of public health, community, and voluntary sector resources has been developed and is available to local GPs and primary care partners. This directory enables healthcare professionals to signpost patients to a wide range of local support services that address the various impacts of long COVID. Further information on the support services available in the Twickenham constituency is available at the following link:

    https://www.kingstonandrichmond.nhs.uk/patients-and-families/patient-leaflets/long-covid-information

    At a national level, NHS England has also published commissioning guidance for post-COVID services, which sets out the principles of care for people with long COVID.

    Between 2019/20 and 2023/24, through the National Institute for Health and Care Research and Medical Research Council, we have invested over £57 million on research into long COVID, with almost £40 million of this through two specific research calls on long COVID. The funded projects aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate the effectiveness of clinical care.
     
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  4. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

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    [​IMG]Ben Maguire Liberal Democrat Shadow Attorney General
    To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential merits of funding research into the (a) causes of and (b) potential cures for Myalgic Encephalomyelitis.

    [​IMG]Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
    As indicated in the interim delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the Government is keen to increase and improve research in this area. ME/CFS can have a devastating effect on the lives of those who suffer from it, and those close to them, and research can hold the key to improving the quality of life for people with ME/CFS.

    The Government funds ME/CFS research through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC). Funding is available and we welcome funding applications for research into ME/CFS. These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality.

    In areas, like ME/CFS, which are underserved by research, we work with other relevant funders to develop strategic solutions. For example, the MRC and NIHR co-funded the DecodeME project. The NIHR, Scottish Chief Scientist’s Office, and the MRC also funded the James Lind Alliance PSP for ME/CFS, facilitated by the charity Action for ME. We will outline further research actions as part of the Final Delivery Plan.
     
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  5. Eleanor

    Eleanor Senior Member (Voting Rights)

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    At least they've stopped using that line about how 'at worst', ME/CFS can make people 'feel' they aren't getting proper care. Perhaps someone's explained how insulting it was.
     
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  6. MeSci

    MeSci Senior Member (Voting Rights)

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  7. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

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    [​IMG]Lord Bethell Conservative
    To ask His Majesty's Government what are the process and criteria for triggering an economic impact assessment of a new disease in the Treasury; and whether they are undertaking an assessment of the suitability of that process and criteria against long Covid, as a condition that did not exist five years ago.

    [​IMG]Lord Livermore The Financial Secretary to the Treasury
    HM Treasury has a comprehensive framework for assessing and managing potential risks to the economic and fiscal outlook, including those posed by new diseases. This framework involves systematic monitoring through internal risk monitors, risk governance forums, and collaboration with other government departments such as the Cabinet Office and the Department of Health and Social Care (DHSC). In escalatory scenarios, such as where a new disease with high transmission rates emerges, HM Treasury is prepared to conduct economic impact assessments to inform policy and response plans.

    During the COVID-19 pandemic, HM Treasury officials engaged with other Government departments to consider the implications of long COVID, including assisting with preparations for the DHSC long COVID Oversight Board. HM Treasury will provide more information on its efforts to understand the economic implications of long COVID-19 to the ongoing COVID-19 inquiry.
     
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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  9. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

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    U.K.
    [​IMG]Ruth Cadbury Chair, Transport Committee, Chair, Transport Committee
    To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve access to treatments for long covid.

    [​IMG]Ruth Cadbury Chair, Transport Committee, Chair, Transport Committee
    To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of clinical research into treatments for long covid.

    [​IMG]Liz Jarvis Liberal Democrat, Eastleigh
    To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support parents caring for children with long covid; and whether his Department plans to develop a long-term strategy to fund (a) biomedical research and (b) treatment for long covid in (i) adults and (ii) children.

    [​IMG]Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
    The Government is committed to ensuring that families have the support that they need. The Care Act 2014 requires local authorities to deliver a wide range of sustainable, high-quality care and support services, including support for carers, which can include parents.

    Across the National Health Service in England, there are services supporting people with post-COVID syndrome, often described as long COVID. These services offer physical, cognitive, and psychological assessment, and, where appropriate, refer patients onto existing services for treatment and rehabilitation. Further information can be found via the NHS website, at the following link:

    https://www.england.nhs.uk/coronavirus/post-covid-syndrome-long-covid/

    The National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC) remain committed to funding high-quality research to understand the causes, consequences, and treatment for long COVID. We are actively exploring next steps for research in this area.

    Between 2019/20 and 2023/24, through the NIHR and MRC, we have invested over £57 million on research into long COVID, with almost £40 million of this through two specific research calls on long COVID. The funded projects aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate the effectiveness of clinical care.

    This includes funded clinical trials to test and compare different treatments such as antihistamines, anticoagulants, and anti-inflammatory medicines, as well as trials such as the approximately £1.5 million REGAIN trial funded through the NIHR. REGAIN is the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high-quality evidence confirming the sustained clinical benefit and lack of harm with rehabilitation programmes for long COVID which combine exercise with behavioural support, to measure their effects on symptoms, health, and other outcomes.

    The approximately £1.9 million CLoCk study, co-funded by the NIHR and the MRC, developed an agreed definition of long COVID in children and young people as well as the associated symptoms, which will help harmonise research and improve understanding of the condition.

    Funding is available and we welcome funding applications for research into long COVID in both adults and children. These 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.

    To support clinical leadership in this area, NHS England has worked in partnership with the British Society of Physical and Rehabilitation Medicine to develop a new Clinical Post-COVID Society to facilitate the ongoing sharing of best practice and to support people affected by long COVID. Further information about the society can be found at the following link:

    https://www.clinicalpcs.org.uk
     
  10. Eleanor

    Eleanor Senior Member (Voting Rights)

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    453
    :banghead:
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    They are describing a total fiction, like Marie Antoinette being paraded around in fake villages. The clinics are terrible. The research funding is over, and it was terribly mismanaged. They keep framing it as "aim to" but not only the studies are all done, they achieved nothing at all. Everything they describe here is a mirage, an illusion, a delusion, even.
     
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  12. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

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    [​IMG]Ellie Chowns Green, North Herefordshire
    To ask the Secretary of State for Work and Pensions, with reference to the Green Paper entitled Pathways to Work: Reforming Benefits and Support to Get Britain Working, published on 18 March 2025, if she will make an assessment of the potential impact of the four-point minimum eligibility threshold on the ability of people with (a) fluctuating illnesses and (b) Myalgic Encephalomyelitis to claim PIP.

    [​IMG]Stephen Timms The Minister of State, Department for Work and Pensions
    Information on the impacts of the Pathways to Work Green Paper will be published in due course, and some information was published alongside the Spring Statement. These publications can be found in ‘Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper’(opens in a new tab).

    A further programme of analysis to support development of the proposals in the Green Paper will be developed and undertaken in the coming months.
     
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  13. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

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    [​IMG]Edward Morello Liberal Democrat, West Dorset
    To ask the Secretary of State for Health and Social Care, how much funding his Department has provided for research on the long-term effects of covid-19 on lung health.

    [​IMG]Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
    The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR and the Medical Research Council (MRC), which is part of UK Research and Innovation, remain committed to funding high-quality research to understand the causes, consequences, and treatment for the long-term effects of COVID-19. The NIHR committed £15.06 million to the following three research projects related to the long-term effects of COVID-19 on lung health, between financial years 2020/21 and 2024/25:

    • Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: providing the evidence base for health care services;
    • HypErpolarised Xenon Magnetic Resonance PuLmonary Imaging in PAtIeNts with Long-COVID (EXPLAIN); and
    • HElping Alleviate the Longer-term consequences of COVID-19 (HEAL-COVID): A national platform trial.
    Between 2019/20 and 2023/24, Government research funders invested several hundred million pounds to understand SARS-COV-2 and the COVID-19 illness. As COVID-19 is a predominantly respiratory condition, much of this research is relevant to understanding the long-term effects of COVID-19 on lung health. On long COVID specifically, through the NIHR and the MRC, we have invested over £57 million on research studies. The funded projects aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate the effectiveness of clinical care.

    Funding is available and we welcome funding applications for research into any aspect of human health and care, including on long COVID and lung health. These 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.
     
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