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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. rvallee

    rvallee Senior Member (Voting Rights)

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    Wow. Also: wow. Two entirely different types of wow.

    This sure beats Cochrane's absolute garbage answer that their classification doesn't mean anything, which actually manages to be a less credible answer than their "dog ate homework" answer to publishing small corrections on their own content.
     
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    4,990
    From: Dr. Marc-Alexander Fluks


    Source: UK House of Commons
    Date: May 17, 2021
    URL:
    https://questions-statements.parliament.uk/written-questions/detail/2021-05-11/346
    Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster


    [Written Answers]

    Chronic Fatigue Syndrome: Medical Treatments
    --------------------------------------------

    Rachael Maskell

    To ask the Secretary of State for Health and Social Care, whether his
    Department has commissioned research into the lightning process for
    people who have myalgic encephalomyelitis (ME) or chronic fatigue
    syndrome (CFS).


    Edward Argar

    The Department funds research through the National Institute for Health
    Research (NIHR). The NIHR has not funded specific research into the
    lightening process for people with myalgic encephalomyelitis or chronic
    fatigue syndrome.

    --------
    (c) 2021 UK Parliament
     
    Barry and MEMarge like this.
  3. MeSci

    MeSci Senior Member (Voting Rights)

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    Shame that Argar can't spell 'lightning'.
     
    FMMM1, NelliePledge and MEMarge like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    shoddy work by the civil servants
     
    MEMarge likes this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Emma Hardy Shadow Minister (Education)
    To ask the Secretary of State for Health and Social Care, what steps his Department are taking to improve the process of diagnosis for people with myalgic encephalomyelitis.

    [​IMG] Helen Whately Minister of State (Department of Health and Social Care)
    On 20 September 2017, the National Institute for Health and Care Excellence announced its decision to undertake a full update of their myalgic encephalomyelitis guideline following a review of the latest available evidence on the diagnosis and management of the condition and a public consultation. This will set the direction on best practice in this area and is due for publication in August 2021.
     
    Ariel, MeSci, MEMarge and 1 other person like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    That it takes 4 years for such a process, which was initially rejected and had to be reopened following too many complaints, looks very incompetent and unprofessional. This is not something to boast about, it's something to be deeply ashamed of.

    But keep those questions coming, they will feature heavily in assigning blame for this disaster.
     
    alktipping, MEMarge and Ariel like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    MEMarge and Florence like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Rachael Maskell Shadow Minister (Digital, Culture, Media and Sport)
    To ask the Secretary of State for Health and Social Care, what training is provided (a) in medical schools, (b) for GPs and (c) for hospital doctors on (a) ME and (b) similar conditions.

    [​IMG] Helen Whately Minister of State (Department of Health and Social Care)
    Each individual medical school in the England sets its own undergraduate curriculum which must meet the standards set by the General Medical Council (GMC), as the regulator of the medical profession. The GMC would expect that, in fulfilling these standards, newly qualified doctors are able to identify and treat or manage any care needs a person has, including relating to chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and other similar conditions.


    @EducateME
     
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Ah well if they "would expect" then it's all good then, no need for anyone to do anything, this clearly takes care of itself.

    They are objectively not capable, though. But it's not as if any of this actually matters.
     
    alktipping likes this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
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    Claire Hanna Social Democratic and Labour Party, Belfast South
    To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria.

    [​IMG] Edward Argar Minister of State (Department of Health and Social Care)
    The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact.

    eta:
    "All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact."
    :laugh:
     
  11. FMMM1

    FMMM1 Senior Member (Voting Rights)

    Messages:
    2,595
    Merged thread
    Here's the question* my MP Claire Hanna asked and the response:

    *"To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria."

    Asked 29 June 2021

    **"The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact."

    I've gone back to Claire to suggest a further question:
    "Hi Siobhán [Claire's assistant],
    Firstly thank you very much for asking this question. The studies referred to [including the controversial PACE trial] have been found by the recent NICE review, of their guidance on ME/CFS, to be "low quality" i.e. since they were typically unblinded (or lacked adequate blinding) and used subjective outcome indicators - questionnaires rather than e.g. activity monitoring. So the Secretary of State for Health and Social Care considers these are "appropriate outcome criteria*" and NICE consider them to be "low quality"!

    This is a much broader issue e.g. the Government funded "research" into Long covid is being carried out by the same researchers who were funded to carry out the "low quality" studies re ME/CFS - using the same flawed methodology. So nothing appears to have changed i.e. no lessons have been learned from the NICE review re ME/CFS.

    Perhaps we could ask a follow up question highlighting an apparent inconsistency?

    Regards"

    Perhaps we could "pester" officials with questions like this - anyone got contacts in the Long covid community?

    @Andy @Trish
     
    Last edited by a moderator: Jul 22, 2021
  12. Adrian

    Adrian Administrator Staff Member

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    They are really relying on peer review to say that quality is achieved. One issue here is that peer review goes to such a small group of people who all produce poor quality research and don't recognize the issues; or have an interest in not challenging the same poor methodology that they use. So maybe the answer is to call for a peer review from a wider community or set minimum standards.
     
  13. chrisb

    chrisb Senior Member (Voting Rights)

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    4,602
    When you consider the definition of "peer"-

    Peer definition is - one that is of equal standing with another : equal; especially : one belonging to the same societal group especially based on age, grade, or status-

    it is hardly surprising that, in this field, peer review would be inadequate.
     
  14. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Yea frankly cheeky to say "peer reviewed" - "low quality" is what NICE considered it to be
    So what they should be saying --- acknowledge NICE findings ---- steps are being taken ---

    So maybe the next question would be along those lines - does secretary of state accept NICE findings that research funded by his Department re ME/CFS is low quality and what steps (such as using objective evaluation criteria) are being taken to address those short comings?

    Would help if we could get Long covid folks on board --- public opinion (AKA "votes"), they might care about that!

    EDIT - need a reference/citation re NICE finding research "low quality" @Michiel Tack ?
     
    Last edited: Jul 19, 2021
  15. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    @Trish you seem to keep up with the NICE Guidance review - do you have a source for the statement that NICE considered PACE etc. to be "low quality" evidence i.e. due to these studies being unblinded/inadequate blinding and using subjective outcome indicators?

    On the plus side @Snow Leopard highlighted* that this study**, published in 2020, which used actigraphy - objective outcome indicator. Fluge & Mella used it in the Rituximab trial so there are examples of objective outcome criteria being used - it's not impossible; just the majority of the UK Government funded psychological studies persist in using subjective outcome indicators (questionnaires).

    EDIT - see @Snow Leopard post below - the proposed study plans to use actigraphy - promising to be good in the future!

    *https://www.s4me.info/threads/nih-p...-ketamine-on-fatigue-study.21510/#post-357835
    https://journals.sagepub.com/doi/abs/10.1177/1352458520936226
     
    Last edited: Jul 20, 2021
  16. Trish

    Trish Moderator Staff Member

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    Evidence Review G
    https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7
    page 317
    (the numbers in the text are line numbers):
    There's a lot more detail in the review G document.
     
  17. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    The MS pilot trial of Ketamine for "fatigue" didn't use actigraphy, but the proposed study which is supposed to include ME/CFS patients is planning on using actigraphy.
     
  18. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    2,595
    Thanks @Trish

    Need to make the effort to look at this.

    EDIT - yes, page 317 has a neat summary of the problems:
    "The majority of the evidence was of low and very low quality. The main reasons for
    24 downgrading were risk of bias, indirectness and imprecision. There was a lack of blinding in
    25 the studies due to the nature of the interventions. This, combined with the mostly subjective
    26 outcomes, resulted in a high risk of performance bias. The committee considered this an
    27 important limitation when interpreting the evidence."

    So maybe a question highlighting Claire's previous question and asking whether the Minister still holds these views and whether he will raise the issue of NICEs comments with NIHR?
     
    Last edited: Jul 20, 2021
  19. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    2,595
    Hi I've just emailed my MP* [Claire Hanna - Siobhán is her assistant]. If I can't get Claire to ask this question then can anyone else think of an MP who might help?

    "Claire/Siobhán,
    I should have provided this in my reply yesterday*

    So maybe a question highlighting your (Claire's) previous question and asking
    "whether, in light of NICE's recent assessment that the evidence provided by previous studies was "low and very low quality", typically due to "lack of blinding" and "subjective outcomes", the Minister proposes to take steps to ensure his Department does not continue to fund "low and very low quality" studies? E.g. by ensuring studies include objective outcome measurements such as activity monitoring [actimetry]."
    Regards and happy to discuss
    Francis

    *[NICE's] Evidence reviews for the nonpharmacological management of ME/CFS
    page 317 has a neat summary of the problems:
    "The majority of the evidence was of low and very low quality. The main reasons for
    24 downgrading were risk of bias, indirectness and imprecision. There was a lack of blinding in
    25 the studies due to the nature of the interventions. This, combined with the mostly subjective
    26 outcomes, resulted in a high risk of performance bias. The committee considered this an
    27 important limitation when interpreting the evidence."
    [https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7]

    EDIT - Minister's response referred to
    "National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome"
    Does anyone know if studies funded by these organisations were reviewed by NICE? Thanks
     
    Last edited: Jul 20, 2021
  20. FMMM1

    FMMM1 Senior Member (Voting Rights)

    Messages:
    2,595
    I've noticed that these MPs recently asked Parliamentary Question on ME/CFS so I've emailed them to see if they'd ask a further question.
    [Claire Hanna, Rachael Maskell, Emma Hardy, Caroline Lucas].


    "Hi,
    [family member] has disabling fatigue, so I do some lobbying re ME/CFS.

    Claire, asked a Parliamentary Question* re "what steps he [Secretary of State for Health and Social Care] is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria".
    [UIN 24368, tabled on 29 June 2021]

    The Answer** stated that "All research commissioned by the NIHR*** and UKRI**** is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact."

    The recent NICE review "Evidence reviews for the nonpharmacological management of ME/CFS" found that the "majority of the evidence was of low and very low quality" [page 317 - https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7]. Typically this is due to the fact that the studies are unblinded, and use subjective outcome indicators [questionnaires] i.e. rather than objective outcome indicators [activity monitoring - "Fitbit" type devices] Basically, as illustrated by Sir Humprey in Yes Minister, questionnaires are not reliable outcome indicators [

    https://www.youtube.com/watch?v=G0ZZJXw4MTA


    ].

    The researchers, who carried out the Government funded "low and very low quality" studies in ME/CFS, are now being funded to carry out research into Long covid - using the same flawed methodology.

    I'm interested in whether any of you would ask a further Parliamentary Question on the apparent inconsistency between the NICE assessment of the quality of these studies and the SOS views, and whether SOS will take steps to ensure that "low and very low quality" research is not funded by his Department? Obviously I'd need to do some more work/research but I'm interested in whether anyone is prepared to raise this?

    Thanks in advance,
    ---


    *Question:
    To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria.

    **Answer
    The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact.
    [https://questions-statements.parliament.uk/written-questions/detail/2021-06-29/24368]
    ***National Institute for Health Research (NIHR) is funded through the Department of Health

    ****UK Research and Innovation (UKRI) is a non-departmental public body of the Government of the United Kingdom that directs research and innovation funding, funded through the science budget of the Department for Business, Energy and Industrial Strategy.
     

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