Dr Nahle's June letter- invitation to join 'ALL OF US'

[Kati]

http://solvecfs.org/june-2017-research-1st-dr-nahle-letter/

On this editorial piece on Solve ME/cfs, Dr Nahle discusses the US precision medicine project called "All of us". It is important in my views that US patients participate in this big project, because it puts us patients 'on the map'.

Here is an exerpt:

Dear Friends,

I am dedicating this editorial to an important national effort on precision medicine that will require participation from all of us. This grand initiative has been in the works for years by the NIH and is ready for roll out in initial testing this summer – it is the NIH Precision Medicine Initiative (PMI) All of Us Research Program.

As announced, the intent of this “historical effort” is “to gather data from one million or more people living in the United States to accelerate research and improve health.” I can’t think of any patient population that is more deserving of being acutely represented in this initiative than the ME/CFS population. That is what I also expressed directly to Director Francis Collins of the NIH this month during a Q&A session after the unveiling of this program at the Precision Medicine World Conference at Duke, where he announced the impending rollout of All of US.

Misrepresentation and neglect have characterized the status of ME/CFS for decades. This new patient-driven platform relies on patient participation for equitable representation. It is an opportunity to contribute to this national record a truly representative sample of our sick population. Dr. Collins expressed to me his hope that All of Us will be a true representation of health status in the US, including that of ME/CFS patients

Read more at the link above and more importantly, if you are from the US, participate.

 

[voner]

@Kati,

thanks for posting that. The director of the project, Eric Dishman, has a series of short videos describing some of the basics of the program. the of the project's "Core Values" is transparency. certainly a change from what this community has experienced in the past when involved with the US federal government . Mr. Dishman seems to be refreshingly earnest and motivated.

when I went and tried to download the app in order to start the process of joining the network (they are in beta testing - a good time to get involved in feedback on the software, etc.), I could never find the app on the ios app store..... anyone else find it?

 

[Kati]

@Kati,

thanks for posting that. The director of the project, Eric Dishman, has a series of short videos describing some of the basics of the program. the of the project's "Core Values" is transparency. certainly a change from what this community has experienced in the past when involved with the US federal government . Mr. Dishman seems to be refreshingly earnest and motivated.

when I went and tried to download the app in order to start the process of joining the network (they are in beta testing - a good time to get involved in feedback on the software, etc.), I could never find the app on the ios app store..... anyone else find it?

Hi @voner, glad to hear. Coming from Canada i can't even open the link to the website. I hope others can help

 

[Snow Leopard]

Large scale prospective studies like this are certainly interesting!