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Thanks for clarifying. I guess I have a problem with the term recovery - in large part because many patients with ME have better and worse periods and some even have significant improvement for a while (days-years). Others have mentioned the concerns about Bell's 25 yr follow-up and how...

@Michiel Tack - I don't know much about Jeff's or Matt's stories so I don't know how they characterized their current state but Jen said clearly that she is in remission. (I view remission and recovery as very different.) Would you be willing to edit your post to reflect that?

@rvallee - there isn't a lot of input on these calls other than questions that must be submitted ahead of the call. June 3, 2019 Meeting Agenda 3:00pm Welcome and SEC Call Overview 3:05pm Updates from CDC – Elizabeth Unger, PhD, MD Branch Chief, Chronic Viral Diseases Branch Centers for...

General info about this US based program: https://allofus.nih.gov/ https://allofus.nih.gov/about https://allofus.nih.gov/about/about-all-us-research-program https://allofus.nih.gov/about/program-faq

I wonder though if it is not so much that people improve but rather that they develop a somewhat better understanding of their limits and manage to stay within them more often.

A few links re multi-site study https://me-pedia.org/wiki/CDC_Multi-site_Clinical_Assessment_of_CFS https://www.cdc.gov/me-cfs/programs/multi-site-clinical-assessment.html https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5565838/...

The CDC is still conducting the multi-site study which probably uses a big portion of the budget. (ETA - I'm not saying one way or the other if that's a good thing or not. They also have a project underway with Georgia pediatricians. But they should do a huge concerted effort to educate...

Interesting article about countering inequality in genetic medicine: Genetic Medicine Is Poised to Create New Inequality. Here’s How to Fix It. To boost the participation of marginalized communities in genetic studies, doctors must first win back their trust. " ...People of European descent...

Are they just trying to get on our nerves? ;) Keep in mind they don't have ME (these studies use Fukuda)-- they have CFS or something CFS-like.

Perhaps not overlooked so much as attempting to milk this cfs data (a Fukuda etc cohort) for anything they can get. (They are continuing to analyze this data which they gathered over 16 years ago. )

I think part of the point in highlighting different groups with ME (be they pediatric, male, female, black/African-American, Asian, LGBTQ+, etc) is that in addition to different group possibly responding differently to treatments, there definitely are diseases/conditions that are more frequent...

Honest question - would those who are concerned about the highlighting the need for diagnoses for a minority group have the same concerns about a post highlighting the need for appropriate diagnoses for pediatric patients? Just as a note - Of all of the pediatric patients I have met over the...

ME Caregiver Support Call (April) Please join us for our next call on Saturday 20 April at 4pm EST. During our next call we will discuss food issues - work-arounds and best practices . Let’s also share recipes. Email them to caregiver@meaction.net and we will email them before the call. We...

(I haven't been able to follow all of the presentations because of caregiving responsibilities.) What sort of discussion has taken place during this conference about cognitive problems in ME?

"Dr. Collins: Transcript of Remarks on April 5, 2019 by Jennie Spotila Dr. Francis Collins addressed the Accelerating Research in ME/CFS meeting for ten minutes this morning. This is my best effort at a transcript of those comments. Thank you, Walter. I’m really glad to be able to be here for...

I am impressed that many people could stick with it in spite of all of cut outs of the livestream.

By chance did folks keep track of/remember other questions that were asked and whether the person asking was new to the field?

Any idea how many are ME-knowledgeable (specialists, advocates,etc) vs. folks unfamiliar with the field?

ETA - Koroshetz suggested that the conference today and tomorrow may help inform responses to the RFI (revised deadline 1 May 2019) so I hope all of the conference material (videos, slides, transcripts) are promptly made available so we can use them as he suggests.

And in case someone from NIH reads this -I also hope the slides for each presentation accompany or better yet, are embedded in the transcripts.