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Closed UK: DecodeME updates, was recruitment thread.

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Sep 12, 2022.

Page 32 of 40
  1. Andy

    Andy Committee Member

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    Yes, Trish is right, we do need people to have received an official ME/CFS diagnosis. And also, anecdotally, we have heard that clinicians are reluctant to give an ME/CFS diagnosis following Covid, proven infection or otherwise.

    And from our FAQ,
    "I have Long Covid, can I take part?

    We think many people with Long Covid will meet the criteria for ME/CFS, but not everyone. If a health professional has given you an ME/CFS diagnosis, then you can take part."
     
    Andy, Sep 19, 2023
    #621
    Peter Trewhitt, MEMarge, Ash and 7 others like this.
  2. Andy

    Andy Committee Member

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    Thank you but I don't agree. We don't want Long Covid patients, we want people who have received an ME/CFS diagnosis.
     
    Andy, Sep 19, 2023
    #622
    Peter Trewhitt, bobbler, Starlight and 4 others like this.
  3. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Okay, sorry. I misunderstood.
     
    Hoopoe, Sep 19, 2023
    #623
    Peter Trewhitt, bobbler and Andy like this.
  4. JemPD

    JemPD Senior Member (Voting Rights)

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    4,187
    Indeed, and well done & gratitude to everyone who has promoted the study in whatever small way.

    BTW when i said yesterday that i'm trying harder now, i just meant that it jumped higher on the priority list. I've been sacrificing self care in order to do other absolutely critical things so promoting Decode outside my immediate circle was lower on the list but since this could be a game changer & theres a risk to the result if the numbers dont come up, its become more important than bathing, for a few days anyway!
     
    JemPD, Sep 19, 2023
    #624
    Peter Trewhitt, Ash, Fainbrog and 7 others like this.
  5. Andy

    Andy Committee Member

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    Thank you for all your efforts, but please look after yourself first. As Jo mentions above, we do already have sufficient numbers to run the analysis, but we will continue our recruitment efforts up to the recruitment end date as the more samples we can add to the analysis will both increase the chances of us finding anything and increase our confidence in whatever we do find.
     
    Andy, Sep 19, 2023
    #625
    Peter Trewhitt, MEMarge, Ash and 10 others like this.
  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    With lots of things in life where you might be needed as a volunteer, you can hope someone else will do it, and only do it if it turns out you are required. I think it is possible in this case that there may be some people who put off doing it in the hope they wouldn’t be required but might do it when the deadline is running out and they learn the target hasn’t been met.
     
    Dolphin, Sep 19, 2023
    #626
    Peter Trewhitt, Ash, Hutan and 5 others like this.
  7. JemPD

    JemPD Senior Member (Voting Rights)

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    4,187
    Thanks Andy for your care. The way i see it is that one more missed bath wont make much difference in the scheme of things. But Decode might lead to me being able to get treatment so i can take as many baths as i like, so temporarily, its worth it.



    this, precisely this
     
    JemPD, Sep 19, 2023
    #627
    Peter Trewhitt, MEMarge, Ash and 8 others like this.
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,220
    I went round Facebook and shared the deadline to dozens of groups today.
    Unfortunately you only reach a small percentage of members of groups with this method. Maybe 5% (?) which might reach 10% or more if posts get some likes and particularly if they get some comments.
    So feel free to do either if you see the posts.

    I've also pinned it to the top of my Instagram, Facebook and Twitter accounts.

    Hopefully quite a number of people will make a big push to try to reach people in the next 8 weeks or so.
     
    Tom Kindlon, Sep 20, 2023
    #628
    Peter Trewhitt, MEMarge, Amw66 and 12 others like this.
  9. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Apologies but rough date for the samples being tested + results of those tests published?
     
    FMMM1, Sep 21, 2023
    #629
    Peter Trewhitt and RedFox like this.
  10. Andy

    Andy Committee Member

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    Hopefully before Aug 2024, which is when our funding ends.
     
    Andy, Sep 21, 2023
    #630
    Peter Trewhitt, MeSci, FMMM1 and 7 others like this.
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Sep 21, 2023
    #631
    Peter Trewhitt, MEMarge, MeSci and 9 others like this.
  12. Hutan

    Hutan Moderator Staff Member

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    I know we've discussed it before, but is there any way the study can be tweaked to accept people who have been diagnosed with Long covid and pass the ME/CFS screening questions? I'm sure that the 5000 Post-Covid ME/CFS target could be achieved in a short time if that was done. We all know that a doctor's diagnosis of ME/CFS in a Long Covid patient isn't really more reliable than self-reporting on a good screening survey (well, with most doctors anyway), so I don't think there would be any loss of accuracy in the sample.

    It's just that you have all of the infrastructure there, you have the funding approved. And the replication of any genetic finding in a LC ME/CFS cohort would create enormous beneficial publicity and access to further funds. The potential pay off from the effort to change the entry criteria is huge.

    There was some tweaking of the entry criteria when it was realised that the exclusion of some co-morbidities was reducing eligible numbers too much. So maybe a further tweak is possible?
     
    Hutan, Sep 21, 2023
    #632
    Peter Trewhitt, MeSci, Ash and 4 others like this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I would be very strongly against any tweaking. any information on LongCovid will be a peripheral bonus for what is supposed to be a rigorous study of ME/CFS. I would actually tend to discourage any consideration of LC until the time comes for a post-hoc analysis of those diagnosed with ME who happened to have had Covid.

    My biggest concern with this study was that if the sample was a small minority of the population base it might skim off people with some genetic trait of no relevance for spurious reasons. Trying to catch another 'LC' population is to me the wrong thing to do. That may just increase the chances skimming irrelevances. Much better to focus on getting a deeper sample of straightforward ME/CFS. If they had Covid that is fine, but it should not bias recruitment.
     
    Jonathan Edwards, Sep 21, 2023
    #633
    Peter Trewhitt, FMMM1, Ash and 5 others like this.
  14. Andy

    Andy Committee Member

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    We have, and while I acknowledge that there is a certain amount of logic to the argument, it is not possible for a number of different reasons that I have previously explained.

    The entry criteria was adjusted after we recognised that certain exclusions, while being sensible to apply in a clinical setting or trial, make less sense for us to apply them to our participants in a genetic study. More detail on this can be read here in our blog posted at the time of the change, https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna/
     
    Andy, Sep 21, 2023
    #634
    Peter Trewhitt, Trish, Ash and 1 other person like this.
  15. RedFox

    RedFox Senior Member (Voting Rights)

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    Restricting participation to people with diagnosed ME is the right thing to do. If this works out (half seriously) we can always do a DecodeLC study later.
     
    RedFox, Sep 21, 2023
    #635
    Peter Trewhitt, obeat, Ash and 2 others like this.
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Major study hopes to tackle ME stigma
    Storm Newton, Health Reporter
    Major study hopes to tackle ME stigma (yahoo.com)
     
    Last edited: Sep 22, 2023
    Sly Saint, Sep 22, 2023
    #636
    Peter Trewhitt, EzzieD, MEMarge and 4 others like this.
  17. Hutan

    Hutan Moderator Staff Member

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    These arguments might make sense if we could have a lot of faith in the diagnoses of CFS or ME/CFS made by doctors. But, we can't. The key thing in trying to ensure as homogenous sample as possible is the screening survey that is part of DecodeME. Therefore, I don't think that people with a diagnosis of Long covid who then 'pass' the screening survey will be substantially different to those with a diagnosis of CFS or ME/CFS who pass the screening survey, except that they have developed their ME/CFS criteria compliant illness recently. For both cohorts, the main benefit of the diagnosis (of CFS or ME/CFS or Long Covid) by a doctor is the increased chance that other obvious reasons for the symptoms (anaemia, thyroid issues...) have been ruled out. I believe that someone diagnosed with LC who ticks all the ME/CFS boxes is just as likely to have 'straightforward ME/CFS' as some one diagnosed with ME/CFS or CFS who ticks all the ME/CFS boxes. Therefore, to get a deeper sample of 'straightforward ME/CFS', the key is getting the largest number of people possible.

    ME/CFS appears to have lots of initiating causes. A SARS-CoV-2 infection seems to be just one of these. I imagine that hardly anyone will have received an ME/CFS diagnosis since Long Covid was recognised. So, by taking the approach DecodeME has, it effectively ruled out sampling people who have developed ME/CFS in the last 3.5 years. Excluding people with ME/CFS-criteria-compliant LC makes as much sense as excluding people with ME/CFS-criteria-compliant CFS who developed their illness after an EBV infection.

    The argument that a sample is skimming off people with certain non-ME/CFS related genetic traits doesn't seem any more of a problem in a ME/CFS compliant post-2020 sample than in an ME/CFS compliant pre-2020 sample. And of course, if you have the samples, you can always exclude them. Sensitivity analyses can done, removing the LC ME/CFS people from analyses. If you don't have the samples, you don't have the choice.

    Also, there are so many benefits that flow from a recruitment effort in Long covid groups. More people would come to understand what ME/CFS is, and might understand about PEM, and the issues with exercise therapies.

    But, of course it's the DecodeME team's call. I'm assuming that there are funds just sitting there, available for the analysis of ME/CFS-criteria-compliant LC samples, that will disappear if the samples aren't there. I could well be wrong about that.
     
    Hutan, Sep 22, 2023
    #637
    Peter Trewhitt, Ash, FMMM1 and 4 others like this.
  18. Andy

    Andy Committee Member

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    You are.
     
    Andy, Sep 22, 2023
    #638
    Peter Trewhitt, MEMarge, FMMM1 and 1 other person like this.
  19. Hutan

    Hutan Moderator Staff Member

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    Ah, thanks. I did think that funding might be a significant factor in the decision-making. I guess things often cost more than expected, and that's certainly the case in the current economy.
     
    Last edited: Sep 22, 2023
    Hutan, Sep 22, 2023
    #639
    Peter Trewhitt, Ash and RedFox like this.
  20. Andy

    Andy Committee Member

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    Major study hopes to tackle ME stigma

    "Researchers behind the world’s largest study of chronic fatigue syndrome, also known as ME, are hoping to tackle the “stigma” associated with the disease as well as working towards potential treatment.

    It comes as the team behind DecodeME urged more people living with myalgic encephalomyelitis (ME) to sign up as a participant before the November deadline."

    https://www.independent.co.uk/news/health/symptoms-university-of-edinburgh-dna-leeds-b2416303.html
     
    Andy, Sep 22, 2023
    #640
    Peter Trewhitt, EzzieD, Kalliope and 8 others like this.
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