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.

 

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.

 

Human nature.

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.

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.

 

Psychiatric disorders also have genetic associations.

 

Not necessarily. Look at the NIH's definition of genetic predisposition:

https://www.cancer.gov/publications/dictionaries/genetics-dictionary/def/genetic-predisposition

Whenever lifestyle emerges as a supposed factor, the cork is out of the bottle.

Not trying to be negative, just looking at possible ramifications.

 

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?

 

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.

 

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?

 

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.

 

I'd love to see an American GWAS to replicate DecodeME. I've heard rumors that the NIH is considering a genetics study.

 

BTW, one of the reasons I think DecodeME has merit is the seeming relevance of the 80/20 rule in both Long Covid and Lyme. Is there a significant minority of the population that find it more difficult to clear pathogens due to genetics?

 

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:

 

Do you remember any details?

I heard Ron Davis was given a NIH grant for studying the HLA genes and found some risk SNPs for ME/CFS. It should be published soon.

 

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.

 

Knowing the specific pathways that contribute to causing ME/CFS could be very valuable.

 

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.

 

In the UK there is, https://bepartofresearch.nihr.ac.uk/, but awareness of it is low.

 

There's probably one in America too. I bet awareness is a big problem. I'm sure interest in participating in studies is low among the general public.