Closed UK: DecodeME updates, was recruitment thread.

So I am well aware I lack clarity. But if ME/CFS is caused by any persistent infection, isn't perfecting diagnostics more important than seeing if a certain gene variation leaves someone more susceptible to a pathogen? Yes, that's a big if, but so is assuming there is a genetic role here. We could potentially merely be exchanging rabbit holes.

I'm also concerned that if an association is suggested, this doesn't simply lead to more patient blaming, e.g., bad genes vs bad luck.
 
duncan said:
So I am well aware I lack clarity. But if ME/CFS is caused by any persistent infection, isn't perfecting diagnostics more important than seeing if a certain gene variation leaves someone more susceptible to a pathogen? Yes, that's a big if, but so is assuming there is a genetic role here. We could potentially merely be exchanging rabbit holes.

I'm also concerned that if an association is suggested, this doesn't simply lead to more patient blaming, e.g., bad genes vs bad luck.
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I don't understand how discovering something that the patient has no influence over at all could lead to more patient blaming. The point of the BPS patient blaming is that the patients could improve if they really wanted to. People have no influence over their genes.

Actually, DecodeME discovering an association would be a huuuuuge step forward for us in getting taken more seriously as a biomedical disease. I'm sure there would be increased interest in us. Maybe afterwards we would be like MS for a long time, still without a cure, still waiting to be fully understood. But even being taken as seriously as MS with similar resources for biomedical research would mean a lot.
 
Wyva said:
I don't understand how discovering something that the patient has no influence over at all could lead to more patient blaming.
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Human nature.

Wyva said:
The point of the BPS patient blaming is that the patients could improve if they really wanted to. People have no influence over their genes.
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Agreed. Nor do they over the pathogen by which they are infected. Perhaps it's just a pick your own poison. If I were directing monies I'd prioritize new and better diagnostics for herpes variants and enteroviruses and tick-borne diseases, etc.
Wyva said:
Actually, DecodeME discovering an association would be a huuuuuge step forward for us in getting taken more seriously as a biomedical disease.
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Or the opposite could happen if no association is found, or the ones that are found are deemed spurious.

But this is a good area to research, for sure.
 
Chris Ponting said:
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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What is the likely timescale for being able to decide if such a trial is viable? And if so, what would then be the likely timescale for getting such a trial done and reporting on its findings? Presumably even if that all went well, a full-scale trial would then need to be done?
 
duncan said:
Not trying to be negative, just looking at possible ramifications.
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We have every reason to be super cautious. Have the genetic association studies (eg polygenic risk scores) in psychiatry led to a reduction in stigmatisation/abuse of patients with schizophrenia, depression etc? Nope, not in the slightest. There's no clear pathway from finding a genetic association and being treated seriously as a biomedical disease.
 
Sid said:
We have every reason to be super cautious. Have the genetic association studies (eg polygenic risk scores) in psychiatry led to a reduction in stigmatisation/abuse of patients with schizophrenia, depression etc? Nope, not in the slightest. There's no clear pathway from finding a genetic association and being treated seriously as a biomedical disease.
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Is it possible sometimes that a genetic anomaly is discovered that, although distinct in its own right, has a sufficiently strong similarity to some other, better understood condition, such as to suggest it shares some commonality with that condition?
 
Barry said:
Is it possible sometimes that a genetic anomaly is discovered that, although distinct in its own right, has a sufficiently strong similarity to some other, better understood condition, such as to suggest it shares some commonality with that condition?
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As far as I know it's not uncommon for SNPs or genes to be associated with multiple distinct illnesses.

Some illnesses believed to be distinct have also been recognized as being the same thing thanks to genetics research.

In my opinion is the genetic risk factors for a complex illness like ME/CFS are going to overlap with those of many other illnesses.
 
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Chris Ponting said:
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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I'd love to see an American GWAS to replicate DecodeME. I've heard rumors that the NIH is considering a genetics study.
 
Good to see a plug for Decode ME in issue one of the National Institute for Health and Care Research’s email Research Roundup. They say:



While COVID-19 has not gone away, the great success of our vaccine programme and the high level of protection the vaccines offer has meant we are now able to live with the virus.


This provides us an opportunity to refresh the NHS COVID-19 Vaccine Research Registry newsletter into a ‘new’ newsletter covering all areas of health and care research - the Research Roundup.



Every other month, you will receive information about a range of health and care studies that are available across the UK for you to consider taking part in. These could include COVID-19 studies too.



This first issue includes some exciting research opportunities, including a trial investigating a new COVID-19 vaccine candidate from Moderna. We are also including a selection of studies for children and infants, in case they are of interest to parents of children that might be eligible.


(ME, Chronic Fatigue Syndrome)
DeCode ME



For people aged 16 and over with ME/CFS



DecodeME is the world’s largest ME/CFS study aiming to find the biological causes of the illness. Those aged 16 and over, living in the UK and diagnosed with ME/CFS are invited to take part. You can take part from home by completing the questionnaire.



Recruiting people across the UK to take part at home.

Find out more

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But perhaps a shame, given that the distro is of MOPs with a vague interest in covid research, that they didn’t suggest that LC sufferers might be eligible.
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duncan said:
So I am well aware I lack clarity. But if ME/CFS is caused by any persistent infection, isn't perfecting diagnostics more important than seeing if a certain gene variation leaves someone more susceptible to a pathogen? Yes, that's a big if, but so is assuming there is a genetic role here. We could potentially merely be exchanging rabbit holes.

I'm also concerned that if an association is suggested, this doesn't simply lead to more patient blaming, e.g., bad genes vs bad luck.
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I am out of the sequence of comments, but I don’t think even if successful DecodeME will identify a specific genetic cause for ME, rather identify an association which will give clues as to which biological system or biomedical aspect to investigate for possible aetiologies and/or possible treatments.

There is a chance there will be no genetic component but the real hope is this study will give big clues where to focus investigations into the causes and treatments of ME.
 
duncan said:
So I am well aware I lack clarity. But if ME/CFS is caused by any persistent infection, isn't perfecting diagnostics more important than seeing if a certain gene variation leaves someone more susceptible to a pathogen? Yes, that's a big if, but so is assuming there is a genetic role here. We could potentially merely be exchanging rabbit holes.
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Knowing the specific pathways that contribute to causing ME/CFS could be very valuable.
 
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One of the questions DecodeME participants are asked is whether they are willing to be contacted to be invited to take part in future research. Such research would need a lot of funding. I hope enough shows up in the genetic data to justify very large future funding allocation for such next steps.
 
Trish said:
One of the questions DecodeME participants are asked is whether they are willing to be contacted to be invited to take part in future research. Such research would need a lot of funding. I hope enough shows up in the genetic data to justify very large future funding allocation for such next steps.
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That's really good. I'm very surprised that there's currently no system that lets you register as interested in doing research, and sends you an e-mail when a study that might interest you is recruiting.
 
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