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UK Genome Wide Association Study (GWAS) project - draft website goes live and feedback sought on recruitment plan

Discussion in 'BioMedical ME/CFS News' started by Andy, Dec 18, 2019.

  1. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Another point I'm wondering about is what reasons people could have to assume the study couldn't be helpful.

    What are the benefits or possible harms if no clear genetic associations were found?

    Or if the findings showed genetic associations with mental illnesses, how could such findings be reasonably interpreted?

    Edit: In addition, I have no clue about "behavioral genetics", only realized there was a debate on this a while ago and assume this isn't relevant for this study. But could this be an issue for people having reservationsl about a GWAS?
     
    Last edited: Jan 15, 2020
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  2. Andy

    Andy Committee Member & Outreach

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    Fukuda should have been removed from the FAQ, it will not be used as a selection criteria for this study.

    The CureME developed algorithm (also referred to as their questionnaire) is the set of questions that will run potential participants through the IOM and CCC selection criteria.

    I'm travelling, so unable to provide more detail/explanation than that at the moment.
     
  3. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Thanks. I'm relieved to hear that.
     
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  4. Kitty

    Kitty Senior Member (Voting Rights)

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    This is unlikely at present, as the genetics underlying mental illness are unclear at best. Also, illnesses such as depression are so common (at least one in four people will be affected at some point in their lives?) that it would be very hard to make a clear genetic link.

    We'll hopefully know very much more about ME by the time geneticists have unpicked the underlying vulnerabilities to serious mental illnesses, and it won't even be part of the conversation.
     
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  5. Ebb Tide

    Ebb Tide Established Member (Voting Rights)

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    I had over a decade where I thought I was recovered, before becoming ill again in 2017 and have been unable to work since.
    I get the impression there are others here who have experienced something similar.

    It would be helpful if the questionnaires could have some way of capturing those of us who have experienced substantial lengthy remissions, or what we thought was recovery.
     
  6. Barry

    Barry Senior Member (Voting Rights)

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    Absolutely! For one thing those who have recovered may simply be in remission. And even if they really have fully recovered, the very fact they went down with ME/CFS in the first place may well mean they nonetheless have something significant in there genetic makeup. The big clue everyone is searching for just might be in that particular group.
     
  7. MerryB

    MerryB Senior Member (Voting Rights)

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    This is a good point, I think the questionnaires need to be clear about what they are asking.

    I remember when I was filling out the CURE ME questionnaires, one of them was asking 'how often do you experience 'X' symptom?' and then I had to choose 'more than usual', "less than usual', 'same as usual' etc.

    I was unsure whether they meant more than usual for me, in my long-term debilitated state, or more than usual for a normal healthy, person or more than usual for me compared to before I got sick.

    With questions about symptoms, e.g. currently I am not having regular crashes, but that's because I am pacing very carefully, hugely restricting my activity, and full of medication.

    So I could say 'not having regular crashes' (for example) and it could be interpreted as me being fine, when actually I am very much not fine.

    So I think the context to which the questions are referring needs to be made clear in the questionnaire instructions.
     
  8. JemPD

    JemPD Senior Member (Voting Rights)

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    crikey. I hope the questionnaire is better than that! - it sounds more like the Chalder Fatigue Scale, which is all 'more than usual/less than usual etc', which is why it's so utterly useless & easily to manipulate the results.
     
  9. MerryB

    MerryB Senior Member (Voting Rights)

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    I can't remember which scale it is, but it's the one that asks whether you have been feeling 'in need of a good tonic'. It always makes me chuckle because I think 'yes, I could do with a good gin and tonic right now' ;)
     
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  10. Kitty

    Kitty Senior Member (Voting Rights)

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    This is really important, but hopefully it can be got around by being clear that questions are based on levels of activity that would be considered normal. For instance, on most days of the week it's usual for healthy people to wash and dress, do some kind of work or activity, prepare or buy food, interact with other people, travel locally if necessary, and maybe do some exercise – all without having to schedule special rest time before repeating the activity.
     
  11. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Wow there are some really hostile comments on David Tuller's blog about this. Mostly from that small clique of "SPECT scan diagnoses ME" extremists. There's no chance of convincing them about it, but we don't want them to convince other PWME not to participate in the trial.

    Does anybody have the energy to reply to the comments on the article and intelligently & calmly refute these comments? (I suggest not JE though because they already claim that he is an enemy of PWME... sorry JE!!)
     
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  12. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    Oh, yeah. Had I the energy to write it, I have a three and a half decade story of this disease
    to bore y’all with.
     
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  13. strategist

    strategist Senior Member (Voting Rights)

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    The comments can be read here

    http://www.virology.ws/2020/01/13/trial-by-error-the-uks-proposed-genetics-study/
     
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I suspect that trying to refute such comments simply fans the flames. I doubt that these sorts of views are going to influence thousands of potential volunteers.
     
  15. strategist

    strategist Senior Member (Voting Rights)

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    Another way to respond to these comments is to add your own comment expressing support for the project.
     
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  16. Kitty

    Kitty Senior Member (Voting Rights)

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    I agree – you can't win. And if the study were funded, I'd wager some of these folk wouldn't be able to resist participating in the end anyway, instead of just grumbling about the lack of research.
     
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  17. Kitty

    Kitty Senior Member (Voting Rights)

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    When we know the final total, I was planning to post a brief message saying how wonderful it is that XXXX people have signed up in such a short time – without making any reference at all to the tiny number of complainers!
     
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  18. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    I’m pleased I’m not the only person who found this confusing.

    I contacted the Biobank about it when I was filling in the questionnaire one time. I can’t find the answer but one of the team (who are always exceedingly helpful) replied to say that it was used for comparing participants’ symptoms at the time their blood was taken with their usual illness state. However, I suspect that many people will have answered it by comparing their illness state to their former healthy state.

    I strongly agree that this part of the questionnaire needs to be made much clearer, and I hope others will raise it with the Biobank.

    [Edit – typos]
     
    Last edited: Jan 17, 2020
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  19. Sarah

    Sarah Senior Member (Voting Rights)

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    I think this was the General Health Questionnaire 28.
     
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  20. MerryB

    MerryB Senior Member (Voting Rights)

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    Oh thank you for clarifying - I am pleased that I filled out the questionnaire correctly then.

    I agree, the Biobank team are always extremely helpful.
     
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