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UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

Discussion in 'BioMedical ME/CFS News' started by Andy, Nov 7, 2019.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Excellent. I am pleased to hear you are not using the NUTS-GTI Dolomite Sprint version with limited turning circle.(~Sorry, a degree of levity is de rigeur here.)
     
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  2. Chris Ponting

    Chris Ponting Established Member (Voting Rights)

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    Yes, we will take care to investigate age-related stratification, particularly because our primary cohort (UK Biobank) is of older folk. One of the covariates used in our analysis is age too.
     
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Don't put pressure on yourself Andy. All this work is very appreciated and we understand it's a lot. Most of us can't significantly contribute so any contribution matters and being able to keep at it is more important.
     
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  4. Barry

    Barry Senior Member (Voting Rights)

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    [my bold]
    [my bold]

    Surely they are not just relying solely on the questionnaire, but also on a medical diagnosis. Both things.
     
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  5. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Apologies if I gave the wrong impression. I did try to explain in a further post.
    • The prevalence of self-reported ME/CFS in studies is usually above 1% and I think that in some (like in the one Medfeb cites) this was true for patients who said that they were diagnosed by a clinician. It's weird that this is much higher than prevalence estimates, it could mean that the label of CFS is used for patients who would not meet diagnostic criteria for CFS.
    • Additionally, there are a couple of studies on patients where the diagnosis of CFS is suspected or made (for example by a GP) who are then examined more thoroughly at a CFS centre. These suggest a high rate (approximately 40%) of misdiagnosis.
    So I don't think the problem is out of the way. My intuition would say it's still indicated to test the diagnostic procedure first to see how it compares to clinically confirmed ME/CFS.
    On the other hand, I know very little about GWAS. Chris Pointing's response (thanks for answering our questions!) does reassure me a bit: if the researchers hope to find genetic signals only ever seen for ME/CFS then the risk of false positives might be less of a problem.

    It's rather exciting to see such an ambitious research proposal in collaboration with the ME/CFS community. I hope it gets funded. Good luck to all those involved!
     
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  6. Trish

    Trish Moderator Staff Member

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    My intuition is that the UK ME Biobank team's questionnaire will be a more reliable gauge of whether someone has ME than most clinical diagnoses in the UK. Many of us have been diagnosed only by GP, or by GP and ME clinic therapist.
     
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  7. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    True but as said I do have a couple of concerns about the me biobank questionnaire (can't remember what exactly as I don't have a copy of it anymore)
     
  8. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    By clinically confirmed I mean by an expert clinician and according to an official case definition, as is the case in most research studies. Not a GP saying he thinks you might have CFS.
     
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  9. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Nor, indeed, a professional at a crappy NHS fatigue clinic saying you have CFS.
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    How do you define an expert in this situation? Being a clinical expert really can only mean being able to identify an illness that is later confirmed through other means. In the absence of any other means of confirmation I am not sure how one can be more 'expert' than sticking to a set of criteria tested by questionnaire. Maybe one can but I suspect bringing in 'experts' may make the process less consistent rather than more. Patients are more likely to respond neutrally to a questionnaire than to an 'expert' who they may or may not take to.
     
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  11. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Someone who knows the diagnostic criteria, is qualified to test for and exclude other possible causes for the symptoms and has done this more than a couple of times in the past.
     
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  12. Andy

    Andy Committee Member & Outreach

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  13. obeat

    obeat Senior Member (Voting Rights)

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    Does the CureME questionnaire differentiate types of orthostatic intolerance?
    NonPoTs
    PoTs
    Orthostatic hypotension
     
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I guess I would call this a competent physician rather than an ME expert.

    I accept that diagnoses in GP records or given to patients have no guarantee of competence in terms of excluding other conditions. I think it would be difficult, however, to vet a questionnaire on the basis of whether or not it matched up with a result from competent exclusion. It would be hard to see how you decide that an alternative questionnaire would be better I think. Even if that was clear I think it would involve a huge lengthy research project. At some point it has to be accepted that recruiting patients cannot involve full clinical diagnostic assessment by the research team.

    Again, I think that including patients who will turn out to have another diagnosis is a relatively minor problem. It will just produce a degree of dilution of the genetic signal.
     
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  15. It's M.E. Linda

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

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    @mariovitali, I am a UK ME/CFS Biobank participant and, if I can help in any way, please shout!

    Thank you @Andy @Simon M @Chris Ponting for all the info so far. It all looks excellent - if any additional samples are needed in the run up to the application, I am more than happy to provide (quick before my age means I will no longer be able to participate in the NIH study!)
     
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  16. MerryB

    MerryB Senior Member (Voting Rights)

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    Thank you for this - I was wondering about whether it would be useful to include relatives who both/all have ME to see whether they all have the same mutations associated with disease?

    Do you think there will be any attempt in this first big GWAS study (if funded!) to identify samples from patients who are related? (e.g. me and my mum both have post-mononucleosis ME, so I wondered whether it would be worth me encouraging her to participate too, and if so whether there would be a means for tagging our genetic relationship in the data).

    It sounds from your comment above that the focus of this first study is to identify gene associations to the disease first, and then once these are identified, to perhaps do separate studies to look at whether these track in relatives with ME? Would it be worth including a means to tag relatives in the initial sample collection, so that even if this isn't included in the initial analysis, it could be included in future analyses without having to collect more data?

    Thanks!
     
  17. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Yes, many thanks to @Andy and @Chris Ponting, and thanks to you @Simon M for all your work and for getting Chris interested in ME research through your friendship. This would clearly not be happening without him, and goodness knows what the CMRC might be up to by now without his involvement.

    Meanwhile, given the CMRC’s past connections with the SMC, it will be interesting to see if and how it covers this. I’ve not been following developments very closely recently due to additional health problems but I’m assuming that the SMC hasn’t said anything about it yet. If the GWAS study gets funding, if and how the SMC decides to cover it could have a significant effect on patient recruitment beyond social media.
     
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am sure that the applicants have all this thought through.

    Looking at which genes follow an illness within a family is a commonly used technique but it involves different sorts of analysis from a basic comparison of ill people with controls.

    No doubt when the project gets up and running there will be advice on recruiting.
     
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  19. MerryB

    MerryB Senior Member (Voting Rights)

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    Ok, thank you for your reply!
     
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  20. Simon M

    Simon M Senior Member (Voting Rights)

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    Chris’s inaugural talk at Edinburgh as professor of , um, whatever:



     
    Last edited: Nov 14, 2019
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