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

[Sasha]

Very interesting thing on Health Rising:

The All of Us precision medicine program, created by the NIH, is looking for one million people in the United States who are willing to have their genomes sequenced and provide their medical records along with blood and urine samples over the next ten years. The goal is to provide insights into how and why people come down with chronic diseases.

The All of Us precision medicine program is the latest and easily the largest of recent efforts to create GIANT biobanks that will help researchers understand diseases better. Over the next ten years, the NIH is going to spend — get this — about $1.5 billion dollars on the initiative...

Francis Collins believes projects like this are the only way to generate enough data to understand how our genes interact with the environment (e.g. history of infections, toxic exposures) and lifestyle (exercise, smoking, drinking, etc.) to create disease.

It’s also a way to get people with poorly studied diseases like chronic fatigue syndrome and fibromyalgia to get their medical data into a major research database for free. Because the program will also be tracking health over time, it provides the opportunity for researchers to track the disease progression and even possibly assess treatment effectiveness.

Data from the project will, of course, be anonymized and be available to ME/CFS and FM researchers who can apply to use it. All at no cost to the patients....

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:

 

[Alvin]

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).

 

[Sasha]

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.

 

[Alvin]

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.

 

[Melanie]

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.

 

[Sean]

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

 

[Sean]

Would give us a very clear picture of the prevalence of ME.

Or at least of PEM.

 

[Sasha]

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

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.