Opportunity for US ME/CFS patients to mass-piggyback onto 'transformative' NIH 1-million-patient precision medicine study

Very interesting thing on Health Rising:

According to Cort, 'A top Harvard neurologist has suggested that the ME/CFS community look into participating in one of most ambitious medical projects ever attempted. If you live in the United States and are over 18, you are invited.'

Looks like a big opportunity for US PWME to pile in.

Read the whole thing at: https://www.healthrising.org/blog/2018/04/24/all-of-us-fibromyalgia-chronic-fatigue-syndrome/

Here's an info video from the NIH:

https://www.youtube.com/watch?v=ti50nS7B5vI

 

I would be very wary of the legal and healthcare implications of genetic discrimination that is completely legal in the US the last time i checked (admittedly some years ago).

 

According to Cort, 'Data from the project will, of course, be anonymized'. Although it appears that patients can get their data, I'd hope that they could also refuse it if they didn't want to know it - I don't know the US situation and whether choosing not to know would protect you from being expected to declare your risk for various diseases to insurers (if that's the case).

It would be worth digging a bit to find out the situation. If those fears can be addressed, it would be good to know - this seems potentially a very good way to piggyback ME/CFS research onto a major initiative, for free.

 

Fair enough but the healthcare situation in the US is very complex and biased against patients, corporations will throw you under the bus, then in front of it then in front of a firing squad because you have a health condition or have in the past (people lose coverage for things like having acne as a teenager or allergies or crap like that).
That said such discrimination is technically illegal at the moment, though they have been rolling back the patient friendly laws piece by piece.

 

I am from the US and yes, there were terrible implications with preexisting conditions and losing insurance. And yet, I think they will easily get their million volunteers. I am disabled and on SS so I cannot lose my insurance and if they would take me I would do it.

I'm enrolling now.

 

Be nice if they used a repeat test protocol. Would give us a very clear picture of the prevalence of ME.

 

Or at least of PEM.

 

This is a mass-biosampling of US citizens with any condition at all. There's no reason for them to do any protocol to a specific disease.