DecodeME - UK ME/CFS DNA study underway

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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:

Hi Peter,

It's nearly time to take part in DecodeME. We’ve improved our questionnaire, tested our systems and DecodeME is ready to launch in September.

Because you’ve signed up to receive updates, we’ll email you when it’s time to take part and you’ll be first in line to join the world's biggest ME/CFS study.

DecodeME aims to find causes of ME/CFS by looking at DNA. And finding causes is the path to finding effective treatments.

We'll send you your invitation to join as soon as we are ready to go!

Follow us on social media for all updates on the study, including more information on the launch date.

We’re very excited about launching and look forward to sending you your invitation next month.

Note: To take part in DecodeME you will need to be over 16, live in the UK and have had an ME/CFS diagnosis by a health professional.

Warmest wishes,
The DecodeME Team
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With the following social media links





 
Lou B Lou said:
How many kits have been sent out so far? And what is the inclusion criteria for Decode?
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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?
 
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Barry said:
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.
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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.
 
Barry said:
is it then a viable secondary aim of this study to identify if such a genetic anomaly is also associated with other medical conditions
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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.

Barry said:
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?
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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."
 
[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.8 August is Severe ME Awareness Day....png
 
Ravn said:
[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.View attachment 17860
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Great:

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Also
Code: 
https://www.facebook.com/TomKindlonMECFS/posts/pfbid02xVxfrHCEnyWkA8dRAqLi9BNLPkyTJ2SUbVxq6oWZpotSwhrP9SJT1qY7ghoDuakol
 
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Note: To take part in DecodeME you will need to be over 16, live in the UK and have had an ME/CFS diagnosis by a health professional.
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and

the 2015 Institute of Medicine (IOM), now known as the National Academy of Medicine (NAM) criteria, or the 2003 Canadian Consensus criteria, but we will not be using the Oxford or NICE 2007 criteria.
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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 think the point is that people will be asked whether that have been diagnosed with ME, not which criteria were used. Whether they then fulfill specific criteria will be determined by questionnaire. So I was diagnosed back in 1990 before any NICE criteria, but my symptoms I believe do fit with the more up to date criteria.
 
Peter Trewhitt said:
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.
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Jonathan Edwards said:
DecodeME does not look at expression, just what variants of genes are present. So the causal implication has to be one way
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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?
 
BrightCandle said:
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.
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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
We will apply a diagnostic algorithm (a very specific set of rules) to assess people according to well accepted diagnostic criteria: the 2015 Institute of Medicine (IOM), now known as the National Academy of Medicine (NAM) criteria, or the 2003 Canadian Consensus criteria, but we will not be using the Oxford or NICE 2007 criteria.
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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.
 
Barry said:
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?
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I don't think I'd have described it as a head of a causal pathway, but otherwise yes you're on the right track.
 
Barry said:
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?
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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.
 
Andy said:
Text of the latest email sent out.


You’re invited to the next DecodeME webinar.

This webinar will be a chance to hear updates about the study and more about the DecodeME questionnaire. You can also have your questions answered.

It’s on Wednesday 3rd August, 3 - 4pm on Zoom and Facebook Live.

There are only 500 spots to watch the webinar on Zoom for those who don’t have Facebook. But if you don't manage to get one in time, don't worry! You can also watch on Facebook live via our Facebook page, or watch the recording when it becomes available on our website

Register for webinar

The focus of Wednesday's webinar will be the DecodeME questionnaire.

Join Chris Ponting, Sonya Chowdhury and Sian Leary from the DecodeME team to find out when you can take part and what that will look like. You will also hear about the work that has been done to create the new DecodeME questionnaire after receiving feedback from our testing phase participants.

There will also be a Q&A session at the end.

Send us your questions ahead of the webinar by replying to this email.

If you can’t make the webinar, don’t worry. There will be a recording available afterward on our website.

To watch the recording of our last webinar on the Science Behind DecodeME click HERE.
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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/
 
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