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    UK House of Lords/ House of Commons - relevant people and questions

    This is an answer from the Secretary of State/Department of Health and Social Care - the Westminster system seems to allow for the appointment of under-Secretary of State but it's still the answer from the Secretary of State/Department. In practice the minions (civil servants) draft the replies...
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    Who Agrees That GRADE is (a) unjustified in theory and (b) wrong in practice?

    "Id Dr Busse had been appointed as chairman presumably there is a high chance that the result would have been different. That makes the system fragile." As a (very) general rule the proposed position/outcome is consulted upon and the hope is that the consultation should reduce the risk that the...
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    Who Agrees That GRADE is (a) unjustified in theory and (b) wrong in practice?

    Thank you for this. I agree surely NICE could employ scientist graduates to do this "I think it would be fair to ask technical staff to search for studies and document a list of features ----." E.g. is the study blinded, does it use object outcome indicators [FitBit or whatever] ---? Hope...
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    UK House of Lords/ House of Commons - relevant people and questions

    I think we should challenge the recent NICE decision to stick with using Cochrane*. I was thinking of writing to the APPGs on ME/CFS (title?) and Coronavirus (title?). If the NICE review re CFS guidelines found the available studies to be "low and very low quality" and Cochrane found them to be...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I don't keep up with this stuff so I may be inaccurate here. The whole thing seems bonkers* we can see NICE aligning themselves with Cochrane but the NICE review has just shown all of the ME/CFS studies were "low or very low quality" and Cochrane presumably marked these as "medium" - how is...
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    Sex-specific plasma lipid profiles of ME/CFS patients and their association with pain, fatigue, and cognitive symptoms, 2021, Nkiliza, Klimas et al

    I assume that problems re lipids would have turned up in one of the metabolomics paper e.g. Jonas Bergquist published a study a few years ago. Need to go and have a look at previous studies. EDIT - added text - there's a good analysis by @Simon M here re Maureen Hanson/Susan Levine's recent...
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    Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review, 2021, Natelson et al

    With such debilitating illness I'm hoping something turns up on the GWAS study - that way there'd be more reliable clues regarding where to focus research.
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    Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Result in Sustained Improvement in ME/CFS - Pereira, Bateman et al, 2021

    The use of a very basic form of actimetry (activity monitoring), i.e. FitBit, in this study seems to challenge the dependence on questionnaires in UK Government studies. Then again it's not as easy to manipulate the results to show the intervention worked - hence the continued reliance on...
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    Exercise performance in patients with post-acute sequelae of SARS-CoV-2 infection compared to patients with unexplained dyspnea, 2021, Alba et al

    @Mithriel just noticed your profile picture and that bear looks like it was introduced to a not very friendly porcupine!
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    Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Result in Sustained Improvement in ME/CFS - Pereira, Bateman et al, 2021

    Wow I'm conscious of how complicated this is and your grasp of the material - thank you very much for this detailed response. I think I read Cort's article when this all kicked off (2018); I'll re-read it.
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    GAS (Goal Attainment Scaling in Rehabilitation), GAS-light, and gaslighting.

    Yea but if you were asked to provide the title then ---- How to build a career out of scamming the public into paying for flawed research --- muppets indeed i.e. the public/public representatives/system which continues to fund this crap.
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    Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Result in Sustained Improvement in ME/CFS - Pereira, Bateman et al, 2021

    I recall @Snow Leopard post here re Fluge & Mella's recent paper*. Is this theory related to HPA axis and if so is this at odds with Fluge & Mella's recent paper? *"Another key finding buried in the text: Corticosteroids* did not seem to be involved, since they depended on age and BMI instead...
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    Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Result in Sustained Improvement in ME/CFS - Pereira, Bateman et al, 2021

    I noticed they used an objective outcome indicator* - interesting to see the raw data --- is it available/has anyone had a look at it? *"Secondary endpoints included: ---- (ii) FitbitTM metrics (activity, HR, and sleep), continuously monitored throughout the trial;---" @Jonathan Edwards has...
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    A map of metabolic phenotypes in patients with myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Fluge, Mella et al

    Yea that's a common concern i.e. how do you get adequate controls to assess the affect of sedentary behaviour?
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    A map of metabolic phenotypes in patients with myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Fluge, Mella et al

    Weird my wife takes carnitine (post antibiotic) and my daughter has disabling fatigue. Carnitine "transports long-chain fatty acids into mitochondria to be oxidized for energy production" [Wiki] so I'm guessing that if you increasing your dependence on fatty acids [for energy], i.e. due to...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Yea but we can see what a shambles you get if you don't employ reviewers who aren't sufficiently knowledgeable and/or have a conflict of interest. If you look at the cost of the review (using appropriate reviewers) and the total cost of the service [on a UK basis] then the cost of the reviewers...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Yea we maybe need that book @Jonathan Edwards --- has the system learned nothing from this debacle?
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    Guardian Article on NICE pause

    Yea, sure others picked up on this from Trudie Chalder: Chalder, the CBT practitioner, said it was unhelpful to see the debate in black and white. “This kind of dualistic thinking – it’s either psychological or physical – is not particularly helpful when you think about any disease. ---"...
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    Fine mapping of the major histocompatibility complex (MHC) in (ME/CFS) suggests involvement of both HLA class I and class II loci, 2021, Hajdarevic

    Yea Ron Davis got (5 year) NIH grant back in 2018 - so maybe this is an early indication of where that it is going [Fluge, Mella --- are part of OMF]. Great explanation of HLA from @Simon M here...
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    Fine mapping of the major histocompatibility complex (MHC) in (ME/CFS) suggests involvement of both HLA class I and class II loci, 2021, Hajdarevic

    Didn't OMF (Ron Davis?) get a NIH grant to sequence HLA? Could have been KIR sequencing of course. Perhaps @Ben H could provide an update? @Jonathan Edwards views might be interesting re this paper EDIT - added text - if we're back to proposing autoimmunity then this technique could...
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