Closed UK: DecodeME updates, was recruitment thread.

Reflecting on attitudes to being excluded from this research study:
Some people are very adamant that strict criteria such as ME-ICC should be used for both clinical and research purposes.
I think it would be interesting to observe reactions when it was found that such criteria would exclude quite a lot of people with ME/CFS from a diagnosis

 

My wife has just been invited to donate her DNA, having been excluded previously, and accepted. I presume they were originally excluding anyone with some other energy-depleting medical condition, but it would seem they have now reconsidered some of those. Maybe where the effects of the other condition are readily discernible from the energy depletion effects that cannot be explained by it?

 

There could be more than one factor, including timing? I can't remember all the questions, but given that I was invited to take part despite having another chronic illness that causes fatigue, it may have been deemed irrelevant because the questionnaire showed I'd had ME for 35 years before the symptoms began.

It seems fairly common for people to develop conditions such as IBS after the onset of ME, but if there's a clear time separation between the two that can be picked up from questionnaires, it might reduce the potential for confusion.

 

Thanks for the clarification Andy.

 

Really pleased to be invited under the new guidelines, especially as I suspect the dealbreaker last time was a diagnosis of adrenal insufficiency which turned out to be a fleeting postoperative effect.

I suppose there’s no way of amending answers and it’s probably not best practice to allow respondents to do so.

 

Sorry, no. By necessity everyone's answers will always be a snapshot of them at the time of completing the questionnaire.

 

This tweet is also doing well (58 retweets)

 

I realised after that the answer is already provided on the Decode ME page:

https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna/

 

This is very good news. Something that can include more people without compromising the science/outcome, is great. Well dome Decode ME team

 

The odds of reaching the 20000 target seem good now. What does the DecodeME team think?

 

That we will count our chickens when they hatch. Obviously this will help a lot but I wouldn't want to make a prediction yet.

 

@Andy or whoever may know - do you have a sense of how long recruitment is expected to continue for?

I've persuaded my family to put up posters around pharmacies, GP, libraries where I live but they're being slow about it - is there much time?

 

We are likely to close recruitment at the end of this year.

 

We still need many more people. In part this is because we don't receive samples for all people sent a kit. The rate of sample kit returns is excellent (85%) - reflecting the strong commitment of pwME - but this does mean that we need to over-recruit to get to our target.

 

85% response rate is huge and it shows just how grateful people with ME/CFS are for good research.

 

I agree the 85% response rate is fantastic - unheard of really. Decode ME is such a brilliant study.

Posts about the MS study discussed below have been copied or moved to a new thread

On a related note, I found the following UCSF and University of Cambridge study on MS, published yesterday, interesting:

Scientists identify first genetic marker for MS severity | University of Cambridge

"A study of more than 22,000 people with multiple sclerosis has discovered the first genetic variant associated with faster disease progression, which can rob patients of their mobility and independence over time [...] This gives us a new opportunity to develop new drugs that may help preserve the health of all who suffer from MS.”

Are there lines of communication open between the Decode ME team and researchers collecting DNA sample sets to search for for susceptibility genes and causal mechanisms for diseases like MS? Hopefully there will opportunities over the long term to share lessons etc

 

Next steps for genetics are: (1) Replication in an independent cohort, (2) Joining forces with other projects to do a meta-analysis and (3) Sequencing whole genomes, looking for rare variants (GWAS only find associations to variants that are frequent in the population). Indeed, there is no funding for any of this as of yet. Next steps outside of genetics are: (4) Determining the mechanisms of action and cell types relevant to specific genetic associations found by DecodeME.
If it's immediately clear what gene is being affected *and* there is a pre-existing drug whose mechanism of action is consistent with what we know about ME/CFS then early small-scale clinical trial.

 

The thought of being able to find genes/SNPs involved in the disease causation is very exciting.