Closed UK: DecodeME updates, was recruitment thread.

Twitter and Facebook posts on this update.

Facebook: https://www.facebook.com/decodeMEst...Ti8ux5i4hRfJEvvxcqs44tqo2S6XxgXnCt31WqDcXbxol

 

That's really good news! Do you know how many additional people are being asked to provide a sample?

 

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.

Obviously I have answered I am happy to contribute DNA.

 

I also have been invited under the new criteria. Like Peter, I assume I was excluded originally because of other conditions.
Similarly, I have also said I'm happy to contribute DNA.

 

This is really good news, Andy. Thanks to the team for working out a way to do this.

Can you give us an update on participation numbers for people with ME/CFS diagnosis following Covid?

 

I don't have the exact figure but it is, relatively, a very small number (<1k) compared to the pre-Covid.

 

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..

 

With regard to swine flu, we have this Norwegian study:

https://pubmed.ncbi.nlm.nih.gov/26475444/

 

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.

 

Looks like a good decision although it is not exactly clear what exactly changed in the inclusion criteria and data analysis method compared to before.

 

Today I have been asked to do a spit test for DNA. Feeling less miffed - they didn't want mine with the first lot.

 

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:

 

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.

 

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.

 

Sorry it’s a bit off-topic but this stands out to me. How many doctors out there refuse to diagnose their patients with cancer because it’s an ‘unhappy’ diagnosis?

 

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.

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.

 

It's a small thing but I feel slightly more validated now that I know someone out there thinks my spit is useful