DecodeME - UK ME/CFS DNA study underway

Hi @Lou B Lou

I registered and signed up for updates on the Decode ME website https://www.decodeme.org.uk

There's an explanation about inclusion criteria on that site and I receive regular emails explaining what's happening with the project. I don't 'follow' social media, but if you do there are also regular updates there.

 

Yes, I also registered and signed up for updates on the Decode ME, but there is just too much repeated information in the emails.

 

This is the update email I got yesterday:

With the following social media links

 

We have had a limited test phase of 500 particpants, who were selected at random from those who had registered their interest with us previously, and you can read about this here, https://www.decodeme.org.uk/online-testing-phase/. We will be opening up recruitment in September.

And the inclusion criteria is matching one or both of the National Academy of Medicine (was previously Institute Of Medicine) criteria and the Canadian Consensus Criteria. Our FAQ entry on the criteria is here, https://www.decodeme.org.uk/faqs/wh...ally-what-about-the-oxford-and-nice-criteria/, although largely it says exactly the same as I just have.

 

Presumably the primary goal of this study is to identify whether there actually is a statistically significant genetic anomaly of some kind - or not - that predisposes people to ME/CFS. If that proves to be true (big 'if' at this stage of course), is it then a viable secondary aim of this study to identify if such a genetic anomaly is also associated with other medical conditions, maybe even ones that are better understood and better treated? Or would that then have to await further funding for a further study?

I appreciate, from previous explanations by others, that because the genome cannot be influenced by illness etc, there will be no ambiguity regarding direction of any causal chain, albeit such a causal chain no doubt complex. So if such an association were found between an ME/CFS genetic anomaly and that of some other medical condition(s), then presumably it would advance medical understanding of ME/CFS, and/or maybe its treatment, enormously. (Edited to add: Although I suppose it would not preclude the possibility that one illness is in the middle of a causal chain, and could lead to the second one?).

Also, is this study sufficiently comprehensive and powered, that if no genetic anomaly is found, that would almost certainly mean there is not one to be found?

 

There is always the possibility that illness or another factor can switch genes off or on, so altering their expression. However this takes me well beyond my forty five year old biology A-level understanding of genetics, so I don’t know if this is something the Decode ME study could pick up or not.

 

I would consider this a part of the primary goal, or at least searching the available literature to attempt to identify any association with any other medical condition.

From https://www.decodeme.org.uk/faqs/wi...ningful-findings-and-to-detect-any-subgroups/

"Until the first GWAS study for an illness is done, it is just not possible to know how meaningful its findings will be. However, we’ve chosen to study 25,000 people with ME/CFS because other projects of this size commonly found around five causal links between DNA and disease diagnosis. ME/CFS could have many independent genetic causes and a study of this size will have a chance of revealing part of this potential spectrum of genetic causes."

 

DecodeME does not look at expression, just what variants of genes are present. So the causal implication has to be one way

 

[Crossposting in the DecodeME and the 8 August Severe ME Awareness Day threads.]

In case anyone's still looking for something to share on their social media this 8 August, I made this post for 2022, feel free to use it.

August seems like a good time to push the DecodeME study, now that it's just about ready to roll, and as a topical bonus it's a study severe pwME can actually participate in.

 

Great:

Also

Code:

https://www.facebook.com/TomKindlonMECFS/posts/pfbid02xVxfrHCEnyWkA8dRAqLi9BNLPkyTJ2SUbVxq6oWZpotSwhrP9SJT1qY7ghoDuakol

 

and

Seem pretty incompatible in the UK populace of ME/CFS sufferers. Given that the vast majority of ME/CFS sufferers can't get any recognition from their GPs at all and the rest will be almost certainly diagnosed under the NICE 2007 criteria this seems to look like a set containing zero people in the UK itself.

 

I've negligible knowledge here but would like to understand the essentials.

Is this in simple terms meaning:

1. There is the issue of which gene variants exist, or do not exist, within a genome.
2. For those gene variants which exist, there is also the issue of whether they are active or not.
3. DecodeME will only look at '1', which is what we start out our lives with, and so is unaffected by any subsequent illnesses.
4. Of interest is if a subset of people are found to have some gene variant in unique combination with the medical condition of interest.
5. If such a combination is found, and the subset comprises a statistically significant proportion of people, then an association can be implied.
6. Because the causal direction of such an association is unambiguous, the gene variant can be deemed the 'head' of any causal pathway, no matter how complex that pathway may end up being.

Am I on the right track here or not?

 

Hi BrightCandle. We have always required that potential participants would need a diagnosis from a healthcare professional of ME or CFS - for example see our FAQ here, https://www.decodeme.org.uk/faqs/ho...recruited-to-the-trial-really-do-have-me-cfs/

As Trish accurately points out, that confirmation of diagnosis is then separate to our use of the NAM and CCC criteria in our diagnostic algorithm, which is part of our questionnaire. The full sentence from the answer, which can be found here https://www.decodeme.org.uk/faqs/wh...ally-what-about-the-oxford-and-nice-criteria/, is

So you can see that we are not expecting GPs or other healthcare professionals to have used the NAM or CCC. Hope this clarifies things.

 

As a short cut, does Simon's blog, https://mecfsresearchreview.me/2019...-of-dna-to-help-uncover-the-causes-of-me-cfs/, help?

Cross posted with Midnattsol.

 

Hi, anyone got a link to the current timeline --- when sampling (saliva in tubes) is due to start etc?

 

Video recording, audio only recording and transcript of the webinar now available here, https://www.decodeme.org.uk/webinar-recording-and-transcript-the-decodeme-questionnaire/

 

https://www.facebook.com/decodeMEst...NV7F1j38Qr9orhwsNzyyGAfmSmGSS1nzqhpvBE76o4drl