Could 23andMe Survey garner attention for greater ME research?: "Pain, Fatigue and Cognition Survey"

[TinaYesen]

I know I've seen mixed research as to how much of ME may be genetically predisposed, but being as I know there are families where multiple generations are affected, I think it's worth pursuing. I also think it's worth pursuing as these genetic repository companies have such a wealth of information, why not put pressure on them to continue to join the hunt for an ME biomarker.

All that said, I'm posting because 23andMe holds a "Pain, Fatigue and Cognition Survey." It's 3 surveys several months apart.

The optimism: If our whole ME community of millions submitted responses, my optimistic brain thinks it'd warrant attention. Most of my answers to the questions are the "severely" and "very often" responses.

You do need to be in the 23andMe database from having done their genetic test to do the survey. If you have, log in and click on the "Research" tab to find the survey.

Example question,

In the past seven days...

I have had trouble adding or subtracting numbers in my head

Never
Rarely (once)
Sometimes (Two to three times)
Often (About once a day)
Very often (Several times a day)

Thank you for reading 🙏

 

[Martin aka paused||M.E.]

I know I've seen mixed research as to how much of ME may be genetically predisposed, but being as I know there are families where multiple generations are affected, I think it's worth pursuing. I also think it's worth pursuing as these genetic repository companies have such a wealth of information, why not put pressure on them to continue to join the hunt for an ME biomarker.

All that said, I'm posting because 23andMe holds a "Pain, Fatigue and Cognition Survey." It's 3 surveys several months apart.

The optimism: If our whole ME community of millions submitted responses, my optimistic brain thinks it'd warrant attention. Most of my answers to the questions are the "severely" and "very often" responses.

You do need to be in the 23andMe database from having done their genetic test to do the survey. If you have, log in and click on the "Research" tab to find the survey.

Example question,



Thank you for reading 🙏

IMO the problem is a) no exclusion of other fatigue illnesses and b) 23andme only tests for 0.2% of your DNA.

 

[BrightCandle]

I did a 23andme test early on in my disease, so far it has found absolutely nothing of note at all. It is part of the reason why I highly doubt the NHS genetic test will be worthwhile because the existing tests already have so far found nothing as well.

 

[SnappingTurtle]

I recently participated in "The Chrome Study" by Dxterity, which focuses on ME/CFS. It would be great if 23andme and other similar companies follow suit. You send in a urine and blood sample along with medical history.

Maybe the 3 surveys are a precursor to a study. Would be nice not to have to spend our own money to give them our data. I suppose if you already participated in 23andme for other reasons, it will still be helpful to enrich the data on ME/CFS patients.

 

[nerd]

23andme has a large user base, but it's very limited by the available data. The DecodeME project is far more sophisticated in their planned surveying method and they use complete genomes. I can't wait for them to launch.

 

[Rufous McKinney]

I can't wait for them to launch.

what happened to the group of researchers doing mE Family genetics?

 

[Martin aka paused||M.E.]

what happened to the group of researchers doing mE Family genetics?

Fereshteh in Stanford does this in her Multi-Omics-Study afaik

 

[TinaYesen]

IMO the problem is a) no exclusion of other fatigue illnesses and b) 23andme only tests for 0.2% of your DNA.

I'm afraid I'm really new to all this only just having my 1 yr anniversary of ME. This is interesting though, do you know what % of your DNA better companies can test? Like what is a good percentage?

 

[TinaYesen]

I recently participated in "The Chrome Study" by Dxterity, which focuses on ME/CFS.

Thank you for sharing, this is great. This is exactly what I was hoping a genomics company was doing. It looks like they are now in the later stage of recruiting healthy volunteers (for comparison to us with ME). I'll ask my friends if they can do it.

https://thechromestudy.com/

 

[Martin aka paused||M.E.]

I'm afraid I'm really new to all this only just having my 1 yr anniversary of ME. This is interesting though, do you know what % of your DNA better companies can test? Like what is a good percentage?

100% is a good percentage. There are some, I use Nebula Genomics.

 

[J.G]

In the past seven days...
I have had trouble adding or subtracting numbers in my head

Never
Rarely (once)
Sometimes (Two to three times)
Often (About once a day)
Very often (Several times a day)

Is there a questionnaire option for "never unless I'd been asked to perform said mental arithmetic for more than 60 seconds in which case my brain pooped out like a dying lightbulb and I wound up with 2 days of PEM"?

I haven't looked at the survey but from the title, are 23andme hoping to find a genetic signal for general fatigueability? That's pretty interesting. However I'm unsure how much pwME have to contribute; the peculiar nature of exhaustion and PEM in MECFS are so very different from "heightened" fatigue in a healthy person or even in other (chronic) illnesses. The misconception that they're somehow comparable is how we acquired the "chronic fatigue" label that's caused us so much grief over the decades