Closed UK: DecodeME updates, was recruitment thread.

RedFox said:
That's really good news! Do you know how many additional people are being asked to provide a sample?
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Approx 7k who have already taken part and weren't previously asked for a sample will now receive an invite; the ameneded criteria has been live on our system for a short while so all recent new participants will have been assessed with it.
 
I have just received an invite to provide DNA under the amended criteria. I assume I was not initially invited as I included one or more of IBS, B12 deficiency, Migraines or food intolerances under cooccurring conditions, though for me these issues all post date my ME onset and vary with my ME, so I can not be certain if they are symptoms of my ME or distinct cooccurring conditions triggered by my ME. Given they commonly feature in ME I am glad the decision has been made to include these additional subjects.

Dear Participant,

Thank you for taking part in DecodeME and for completing the questionnaire. Following an update to our criteria for the DNA stage, we'd like to now invite you to provide a DNA sample, even though we initially informed you that we would not be asking you to provide a DNA sample after you completed the questionnaire.

Over the past months, we have carefully reviewed the DNA stage selection criteria, consulted with our funders and obtained approval from the ethical committee to change this second phase to include more participants without jeopardising the results.

All you need to do is select YES below and a spit kit will be sent to you within a few weeks. Once you've selected an answer below, it will be recorded in our system and you do not need to contact us directly unless you have any questions.

Please select the options below to respond

(Links for Yes & No)

We understand that our previous decision may have caused disappointment and confusion. We hope our statement (click here to read the statement) and the video below offers more clarity on our decision to make this change and that you will be able to now take part in this next phase of the study.

Click here to see the video message from DecodeME Management Team

We want to emphasize that by completing the questionnaire stage you have already made a valuable contribution to our project. Your answers have contributed to important research and we thank you very much for taking part.

It is important to note that your participation remains entirely voluntary, and you are under no obligation to proceed. We completely understand and respect your decision, whatever it may be. You continue to be a participant of DecodeME even if you prefer not to accept our invite to donate your DNA sample.

If you choose to accept our invitation, we will send you a DNA sample kit to your home address, with detailed instructions on how to collect and return your sample. Your sample will be returned to the UK National Biosample Centre where it will be processed, and half of it will be sent for analysis to a company called Thermo Fisher Scientific. The other half will remain stored at the Biosample Centre. For more information, please refer to page 5 of our Participant Information Document. We will also be available to address any questions or concerns you may have throughout the process via info@decodeme.org.uk
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Obviously I have answered I am happy to contribute DNA.
 
I wonder how many people have both long covid and an ME/CFS diagnosis. My doctor was reluctant to diagnose me with CFS because it's an 'unhappy' diagnosis, so I might guess if someone has long covid they'd probably get diagnosed with long covid rather than ME or both - all conjecture obviously. I was told at one point by my occupational therapist ages ago that they saw a spike in ME/CFS referrals system wide after 2009 swine flu. I would love to know the numbers since covid and to what extent the presumptive ME/CFS spike has been absorbed instead by long covid referrals.

Is anyone on this forum diagnosed with ME/CFS as a result of long covid? Maybe I should start a poll..
 
chillier said:
I wonder how many people have both long covid and an ME/CFS diagnosis. My doctor was reluctant to diagnose me with CFS because it's an 'unhappy' diagnosis, so I might guess if someone has long covid they'd probably get diagnosed with long covid rather than ME or both - all conjecture obviously. I was told at one point by my occupational therapist ages ago that they saw a spike in ME/CFS referrals system wide after 2009 swine flu. I would love to know the numbers since covid and to what extent the presumptive ME/CFS spike has been absorbed instead by long covid referrals.

Is anyone on this forum diagnosed with ME/CFS as a result of long covid? Maybe I should start a poll..
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With regard to swine flu, we have this Norwegian study:

Conclusions: Pandemic influenza A (H1N1) infection was associated with a more than two-fold increased risk of CFS/ME. We found no indication of increased risk of CFS/ME after vaccination. Our findings are consistent with a model whereby symptomatic infection, rather than antigenic stimulation may trigger CFS/ME.
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https://pubmed.ncbi.nlm.nih.gov/26475444/
 
chillier said:
I would love to know the numbers since covid and to what extent the presumptive ME/CFS spike has been absorbed instead by long covid referrals.
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A friend’s daughter was diagnosed with ME following Covid in 2020, which impressed me that there were people willing to make that diagnosis relatively early on in the pandemic.

However I suspect it will be very hit and miss with a very significant level of under diagnosis, especially as there will be many Long Covid diagnoses being missed any way. Also of interest is the percentage of medics who consider some form of Long Covid diagnosis as precluding any additional ME/CFS diagnosis.
 
Tom Kindlon said:
With the change of eligibility today, I’d be hopeful that most if not all of the 20,000 non-Covid samples will be obtained.

But any unused government-funding would be disappointing so I put this out:
https://twitter.com/tomkindlon/status/1673409258308640769?s=46&t=fB55_-omyDIDREBokX-E6Q
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They reached 10,000 samples requested in May. And Andy just said they're requesting 7k more. If they're got, say, 1k samples since that announcement and everyone in the 7k responds, that'd be 18k.
 
RedFox said:
They reached 10,000 samples requested in May. And Andy just said they're requesting 7k more. If they're got, say, 1k samples since that announcement and everyone in the 7k responds, that'd be 18k.
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Fingers crossed the target of 20,000 non-Covid ME/CFS cases will be reached. Not everyone who is asked will return their sample and not all samples will be of an acceptable quality and so people will need to be contacted again and there could be some loss of numbers there. I haven't been following the percentages on these losses.

However my tweet relates to the 5000 Covid ME/CFS cases where submissions have been quite low.
 
This shift in criteria sounds like an excellent idea to me. There is often a tendency to be too restrictive about recruitment criteria because of worries about comorbidities confounding results. It may have been a good idea to be very strict at the beginning but I doubt there will be problems in loosening things now. It should be reasonably easy to ensure that no damage has been done by a change (assuming that the change is not driven by unblinded data already seen, which I very much doubt).

If the numbers can be shifted up to 15,000 plus and with luck nearer to the original 20,000, then things are looking good.
 
ME/CFS Skeptic said:
it is not exactly clear what exactly changed in the inclusion criteria
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Indeed, that will be made clear when we publish our final results. We are not making it clear before in order to reduce the risk of biasing recruitment.

ME/CFS Skeptic said:
data analysis method compared to before
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In short, nothing. The data analysis plan, which can be read here for anybody else interested, always needed to be able to accomodate co-occuring conditions, and this therefore meant that it can handle co-occuring conditions that in other studies are used to exclude participants.

To quote the lay summary of the plan, "to ensure any genetic associations (findings) are not being driven by common co-occurring conditions (including, but not limited to: IBS or Fibromyalgia), further sensitivity analyses will be performed to adjust for this."

We obviously did so in anticipation of receiving ethics approval, however if we hadn't received it then there would have been no need to change anything in the plan.
 
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