Open US NIH-funded mega project, All of Us, to characterize and track the health of one million people in the US

Image from Massachusetts ME/CFS & FM Association July 2021 Newsletter
https://www.massmecfs.org/newsletters/773-2021-07-july-newsletter
(encourages participation in the NIH research project 'All of Us')

More info at:
https://allofus.nih.gov/about/all-us-research-program-overview

Register at
https://allofus.nih.gov/get-involved/participation​

 

To facilitate sharing:
https://twitter.com/user/status/1418292354516230144

 

Post-treatment Lyme? Seems political straight out of the chute. Doesn't bode well.

 

For once I agree with @duncan. The allofus.nih.gov webpage looks like pure politics to me.

I cannot see any point in PWME contributing to a project that is not properly epidemiologically structured. This looks like simple window dressing driven by some people building empires in 'precision medicine' which means nothing.

 

It looks like you are quoting something from the Massachusetts ME/CFS & FM Association July 2021 Newsletter rather than anything from the project itself?

 

Just from what you posted at top of thread.

 

One of the research participants is:

https://allofus.nih.gov/about/who-we-are/all-us-research-program-advisory-panel/rory-collins-fmedsci

Here is the Biobank set up:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4380465/

To quote from the above (the conclusion section):

The key lessons learned from establishing UK Biobank are that such large-scale studies require not only a clear scientific focus but also streamlined governance; effective working between academic and management disciplines; centralised infrastructure with industrial approaches to collection and processing of data and samples; close partnership with major funders; a wide network of scientific advisors; high-quality, pragmatic legal and ethical advice; and widespread public support [21]. The resource is now facilitating research by scientists from around the world who wish to investigate how different diseases are caused by the combination of lifestyle, environment, and genes, leading to improvements in prevention, diagnosis, and treatment. Perhaps unsurprisingly, early use has been mainly, but not exclusively, by UK-based scientists. A major aim for the immediate future is to encourage applications from outside the UK. To facilitate this, UK Biobank is further developing its communications strategy to increase awareness of the resource and its access procedures worldwide.

 

Okay, thanks for replying. As the first post itself says, that is copied from the Massachusetts ME/CFS & FM Association July 2021 Newsletter. I very much doubt that those involved in the research study were involved in coming up with the wording for that particular plug that only mentions a few specific conditions.

 

I’m not very knowledgeable about lyme issues, so this is probably my ignorance, but please can you explain why “post-treatment lyme” makes it look political? My understanding is that some people seem to develop ME/CFS type symptoms following Lyme disease. Is the term “post-treatment lyme” considered unhelpful, or am I missing the point?

 

Reminds me of the biobank in the UK, which seems pretty uncontroversial.

 

Maybe I can field part of this question, at least the Lyme part? As with most things Lyme, it's best to look at history. Before PTLDS was pushed, Post-Lyme Disease Syndrome was promoted. The push-back from the Lyme patient community was loud and swift, and it seems that the "compromise" was PTLDS. Problem that some people like me have with both is that both make broad assumptions. The first, PLDS, that persistent sequelae are absolutely NOT from ongoing Lyme infection. But they could not know this.

A similar problem presents with Post-Treatment Lyme Disease Syndrome in that a broad assumption is being made, i.e. that conventional IDSA/CDC recommended treatment is, if not universally appropriate, then close to that. Only, THAT isn't proven either. In fact, again, history tells us a different story, meaning - at the very least - a significant minority of patients treated will not recover. Some of the early key proponents of what eventually became the CDC-recommended treatment protocol purportedly appreciated that sad fact as far back as the early and mid '80's.

So why is it political? Because it seems to attempt to placate a few very powerful policy makers for the sake of, as far as I can see, simply placating them. It is making them happy, and perhaps more importantly, at the same time reassuring insurance companies and State agencies that might have to foot the bill for longer-term treatments by practically insinuating that CDC treatment protocol is effective enough for almost everyone.

 

The comment re Lyme was from an ME association and I have no view on that.
The political aspects for me are more general.

 

The UK Biobank seems to be a useful resource as far as I can see. However, any data gathering project based self-registration through the net has major disadvantages in comparison to traditional population based epidemiological studies. I continue to have significant concerns about cohort bias for DecodeME but I am happy that the route chosen is probably the most cost-effective compromise.

The blurb for this one in million project looks altogether more empire building and shoddy. When blurbs start pushing buzzwords like 'precision medicine' you can be pretty sure the project is driven by phoneys. Good old fashioned medical science did not need marketing pitches like that.

The project might be useful for cut and dried medical problems like stroke or diabetes but for ME I see major problems with skewed data that could be used to negative effect very easily.

And the problem with ME research isn't huge data set gathering anyway. The problem is in knowing what we need to measure to see what is going on. The exception to that is GWAS but that is where biased selection is likely to be most troublesome.

 

Some more links for the NIH All of Us Research Program -

Twitter account: https://twitter.com/AllofUsResearch/

Recent news coverage: https://kvoa.com/news/2021/07/16/national-all-of-us-covid-19-genetics-study-happening-at-banner-umc

Research Projects Directory: https://www.researchallofus.org/research-projects-directory/
(currently 634 active projects)

I have no idea whether it would be a good idea for ME patients to add their data to this project, but I thought it would be helpful to add more information.

 

Probably one way to "understand" post treatment Lyme disease is to look at the introduction to this paper:
"
Abstract
Background: Neurologic Post Treatment Lyme disease (nPTLS) and Chronic Fatigue (CFS) are syndromes of unknown etiology. They share features of fatigue and cognitive dysfunction, making it difficult to differentiate them. Unresolved is whether nPTLS is a subset of CFS."
https://pubmed.ncbi.nlm.nih.gov/21383843/

So basically ME/CFS and post treatment Lyme could simply be the same disease - or a sub-set of ME/CFS could be the same as post treatment Lyme.

 

2-hour signup for people with CFS Can that be broken into 7-8 parts?

 

This opportunity is still available.

From @MassMECFS e-newsletter

Join the All of Us Research Program at NIH
The NIH is enrolling 1 million people in the U.S. in its All of Us Research Program aimed at building one of the most diverse health databases ever. This database will be used by researchers to study how biology, lifestyle, and environment affect health, and could potentially lead to treatments and cures for diseases.

It is particularly important that people with ME/CFS, Long COVID, post treatment Lyme disease, POTS, and dysautonomia sign up so that we are well represented in the database.
You can learn more and sign up here https://allofus.nih.gov/ . The study lasts for 10 years and includes health surveys, possibly sharing your electronic health record, and possibly providing biological samples (blood or urine). You can say no to any part of the study.