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
 
Andy said:
New blog

Inviting More Participants to Donate DNA

  • DecodeME can now invite even more people to donate their DNA.
  • This is because we will apply an additional scientific method to ensure that our genetic findings are due to ME/CFS and not to common co-occurring conditions.
  • This new opportunity came after reviewing our genetics analysis steps, and after positive discussions with our Scientific Advisory Board.
  • The new plan will make DecodeME more inclusive and more likely to increase its number of discoveries
  • DecodeME study criteria are still based on two internationally-applied sets of criteria, the Canadian Consensus and IOM Criteria, both of which require post-exertional malaise. Furthermore, participants are still required to have an ME/CFS diagnosis to participate.
  • Some, but not all, participants who were previously unable to donate their DNA, will now be invited to do so by email.
Read more at https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna/
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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?
 
Barry said:
Maybe where the effects of the other condition are readily discernible from the energy depletion effects that cannot be explained by it?
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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.
 
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.
 
Barry said:
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?
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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 because we will apply an additional scientific method to ensure that our genetic findings are due to ME/CFS and not to common co-occurring conditions.
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@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?
 
Hoopoe said:
The odds of reaching the 20000 target seem good now. What does the DecodeME team think?
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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.
 
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
 
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From @Jacob Richter's link on MS genes:
Interesting, and it really underlines how important it is to set up patient registries that track patients over the course of their illness.

In findings published today in Nature, an international collaboration of researchers report a genetic variant that increases disease severity, providing the first real progress in understanding and eventually fighting this aspect of MS.

The work was the result of a large international collaboration of more than 70 institutions from around the world, led by researchers from UCSF (USA) and the University of Cambridge (UK).

“Inheriting this genetic variant from both parents accelerates the time to needing a walking aid by almost four years,” said Professor Sergio Baranzini at UCSF, co-senior author of the study.

“Understanding how the variant exerts its effects on MS severity will hopefully pave the way to a new generation of treatments that are able to prevent disease progression,” said Professor Stephen Sawcer from the University of Cambridge and Cambridge University Hospitals NHS Foundation Trust, the other co-senior author of the study.

To address the mystery of MS severity, two large MS research consortia joined forces: The International Multiple Sclerosis Genetics Consortium (IMSGC) and The MultipleMS Consortium. This enabled MS researchers from around the world to pool the resources needed to begin to identify the genetic factors influencing MS outcomes.

Previous studies have shown that MS susceptibility, or risk, stems in large part from dysfunction in the immune system, and some of this dysfunction can be treated, slowing down the disease. But, explained Baranzini, “these risk factors don’t explain why, ten years after diagnosis, some MS patients are in wheelchairs while others continue to run marathons.”

The two consortia combined data from over 12,000 people with MS to complete a genome-wide association study (GWAS), which uses statistics to carefully link genetic variants to particular traits. In this case, the traits of interest were related to MS severity, including the years it took for each individual to advance from diagnosis to a certain level of disability.

After sifting through more than seven million genetic variants, the scientists found one that was associated with faster disease progression. The variant sits between two genes with no prior connection to MS, called DYSF and ZNF638. The first is involved in repairing damaged cells, and the second helps to control viral infections. The variant’s proximity to these genes suggests that they may be involved in disease progression.
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To confirm their findings, the scientists investigated the genetics of nearly 10,000 additional MS patients. Those with two copies of the variant became disabled faster.
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@Andy or @Chris Ponting, if you have a spare moment, perhaps you could remind us what might happen after the initial DecodeME project? I guess you'd need a whole lot more funding to create an ongoing very large patient registry?

Professor Alastair Compston from the University of Cambridge and a founding member of the IMSGC added: “Having been personally involved with the identification of susceptibility genes for multiple sclerosis since the 1970s, it is a tribute to those within IMSGC who led this project that fully independent risk variants for progression have now been discovered.
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Hopefully it won't take 50 years for the genetics of ME/CFS to be unravelled.
 
Hutan said:
From @Jacob Richter's link on MS genes:
Interesting, and it really underlines how important it is to set up patient registries that track patients over the course of their illness.

@Andy or @Chris Ponting, if you have a spare moment, perhaps you could remind us what might happen after the initial DecodeME project? I guess you'd need a whole lot more funding to create an ongoing very large patient registry?

Hopefully it won't take 50 years for the genetics of ME/CFS to be unravelled.
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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.
 
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