European Parliament questions

Discussion in 'General ME/CFS news' started by Sly Saint, Nov 23, 2017.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    upload_2017-11-23_17-6-32.png
    9 November 2017
    "Subject: Funding of research on ME/CFS

    Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects more than one million people within the EU. This illness is characterised by persistent and excessive fatigue, post-exertional malaise, flu-like symptoms and cognitive impairments. Most sufferers are unable to lead a normal life. Those affected are predominately women.

    Many of the symptoms of ME/CFS overlap with those of Lyme disease and fibromyalgia.

    There are no established biological diagnostic tests for ME/CFS, nor are there any treatments.

    Scientists from Newcastle and Cornell Universities have recently published data showing that mitochondrial energy production is impaired in ME/CFS, while mental health remains normal. Scientists at Stanford University have also recently published data showing activation of immune cells (clonal expansion) in ME/CFS, which is similar to that found in Lyme disease.

    These studies highlight the need for biological research into ME/CFS. Recently, the American National Institute for Health (NIH) allocated funding to biological ME/CFS Research Centres and single ME/CFS projects.

    1. Will the Commission review the recently published biological ME/CFS studies and fund expanded studies which include Lyme disease and fibromyalgia?

    2. Will the Commission review the recent allocation of NIH funding for biological ME/CFS research and set out how it proposes to fund ME/CFS research?"
     
  2. Valentijn

    Valentijn Guest

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    I hate it when groups make it sound like ME is all about Lyme or pretty much the same thing as fibromyalgia. How can anyone answer a question which itself contains assumptions that can't be accepted?

    Any idea who asked these questions?
     
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  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Alex Mayer (S&D) I think. I can't access the answer:
    http://www.europarl.europa.eu/sides/getDoc.do?type=WQ&reference=E-2017-006901&format=XML&language=EN

    eta:
    http://www.europarl.europa.eu/meps/en/185637/ALEX_MAYER_home.html
    Female MEP(Labour) from UK (High Wycombe England)
     
    Last edited: Feb 3, 2018
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  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Another question :
    "
    Parliamentary questions

    [​IMG] 101k [​IMG] [​IMG] 17k
    28 August 2018
    E-004360-18
    Question for written answer E-004360-18
    to the Commission
    Rule 130
    Rory Palmer (S&D)

    [​IMG] Subject: Myalgic encephalomyelitis: recognition by the World Health Organisation and Commission support for research and training
    [​IMG] Answer in writing

    Will the Commission make formal representations to the World Health Organisation (WHO) in support of the WHO officially recognising myalgic encephalomyelitis (ME) as a ‘serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of affected patients’ (as defined by the Institute of Medicine in 2015)?

    Furthermore, will the Commission support further and accelerated biomedical research to develop improved diagnostic methods and treatments for ME?

    Will the Commission undertake to support efforts to ensure appropriate and improved medical education and training for health and social care professionals working with ME patients?

    http://www.europarl.europa.eu/doceo/document/E-8-2018-004360_EN.html?redirect

    here is the answer

    http://www.europarl.europa.eu/doceo/document/E-8-2018-004360-ASW_EN.pdf
     
    Last edited: Nov 2, 2018
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  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Subject: Chronic fatigue syndrome

    [​IMG] Answer in writing

    Myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), is a severe disease affecting more than one million people in the European Union, 80% of whom are women.

    New research shows that ‘phenylalanine can be used as a potential biomarker for the diagnosis of CFS’(1) .

    This is a blood-based diagnostic test for ME/CFS.

    Is the Commission aware of this new research?

    Will it make funding available for the research and development of diagnostic tests for ME/CFS?

    [​IMG]
    (1) https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract

    thread here:
    https://www.s4me.info/threads/a-new...an-micro-spectroscopy-2018-morten-et-al.5445/

    answer:
    http://www.europarl.europa.eu/doceo/document/E-8-2018-006124_EN.html
     
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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Moderator note: This petition is discussed on this thread:
    https://www.s4me.info/threads/eu-pe...ding-for-me-research.10363/page-2#post-200831


    PETI-CM-640684_EN
     
    Last edited by a moderator: Sep 30, 2019
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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://www.europarl.europa.eu/doceo/document/E-9-2020-001545_EN.html

    https://www.europarl.europa.eu/doceo/document/E-9-2020-001545-ASW_EN.html
     
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Subject: Additional funding for research on Myalgic Encephalomyelitis (ME/CFS)
    https://www.europarl.europa.eu/doceo/document/E-9-2020-003764_EN.html
     
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://www.europarl.europa.eu/doceo/document/E-9-2020-003909_EN.html
     
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  11. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Thanks for posting these @Sly Saint ! Great to see these questions about the ME resolution being asked to the European Commission.
     
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  12. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Another parliamentary question about the resolution

    26/06/2020 - Question by Chris MacManus, GUE/NGL https://www.europarl.europa.eu/doceo/document/E-9-2020-003779_EN.html
     
  13. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    There were also two MEPs that we know of that made "written explanations of vote", a short comment supportive of the ME/CFS resolution.

    Peter Jahr (Germany, EPP) https://www.europarl.europa.eu/meps/en/96772/PETER_JAHR/home
    Demetris Papadakis (Cyprus, S&D)https://www.europarl.europa.eu/meps/en/124692/DEMETRIS_PAPADAKIS/home
     
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  14. rvallee

    rvallee Senior Member (Voting Rights)

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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    18 August 2020

    E-003764/2020
    Answer given by Ms Gabriel
    on behalf of the European Commission
    Question reference: E-003764/2020
     
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  16. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Thanks for posting. Quite a disappointing answer.
     
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  17. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Agius Saliba’s question is answered as well, although the response is rather disappointing.

    EDIT: to clarify this response dates back from June 2020 so it is not new.
    Question: https://www.europarl.europa.eu/doceo/document/E-9-2020-001545_EN.html

    Answer: https://www.europarl.europa.eu/doceo/document/E-9-2020-001545-ASW_EN.html
     
    Last edited: Aug 29, 2020
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  18. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  19. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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  20. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    The question by Chris MacManus has now also received a response from the European Commission (with pretty much the same content):
    Source: https://www.europarl.europa.eu/doceo/document/E-9-2020-003779-ASW_EN.pdf
     
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