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I believe so. If you are in the US, probably the simplest way is to volunteer with ME Action USA. It looks like they were working on it with Solve, and I am not sure who else.

correct. Nothing happens next as far as the specific resolution. The point of it is to get officials involved and knowing what the disease actually is, that it's underfunded and patients aren't doing well, etc. So that when a funding bill comes, or a bill to restore CFSAC, etc. they will know...

I can't decide. Collins doesn't want to move funding from other diseases and that's a rational decision. (I didn't say fair, note. I said rational. If life were fair, it would be allocated already so that we had a fair piece, but didn't have to reduce anything to get there.) Collins makes a...

PS, that is not a useful critique. In the first place there are no details. In the second place, there are papers at least as recent as 2017 (perhaps newer).

Anyhow my purpose in coming to this thread was to leave this here: https://www.s4me.info/threads/improvement-of-severe-myalgic-encephalomyelitis-chronic-fatigue-syndrome-symptoms-following-surgical-treatment-of-cervical-spinal-stenosis-2018-rowe.2226/ There are images but I am not a neurologist.

There's no proper citation, but this blog claims Grahame and Brighton Beighton say it was designed for epidemiological research, and while it was used clinically, that wasn't the original purpose. http://edsresearch.weebly.com/the-brighton-score-and-the-beighton-score.html

That's just for hypermobility, which may or may not be a disease, depending on whether or not it's bothersome. hEDS is not diagnosed by Beighton. Beighton was never intended for clinical diagnosis, and should never be used for that. hEDS is diagnosed by Brighton (Tinkle update), now by 2017...

Just wanted to remind everyone that this paper exists. Reminder: there's a big difference between a subgroup with some specific features that may in some cases be amenable to surgery (some cases do not have a surgical remedy), and a diagnostic test or feature of ME in general. This is saying a...

My browser doesn't like that link, but thanks for explaining what you read :)

https://link.springer.com/article/10.1007/s10143-018-01070-4

Google claims this one discusses fatigue, but I can't access that part https://thejns.org/view/journals/j-neurosurg/53/4/article-p444.xml

hEDS is real. Some people have gotten confused because of the existence of BJH asymptomatic JH (joint hypermobility without any bothersome symptoms) and don't realize that hEDS is not only about joints, but this is their own problem and not the hEDS patients'. However I agree that it's not good...

Hopefully there's a better option? The two problems with this are 1) the new editor (neither of the previous editors think he's doing a good job) http://www.voicesinbioethics.net/voices-in-bioethics/2016/12/1/careers-in-bioethics-interview-with-dr-marcia-angell...

That's what I suspected. Thanks for explaining. This case actually illustrates that. The paper in the OP establishes a reference value that incorporates as "normal" many of the values flagged in the papers cited as being warnings that a procedure may not go well, or something else adverse might...

Do we know if there's any follow up or result from this?

Found a citation about the largeness of the studies: https://www.s4me.info/threads/size-matters-just-how-big-is-big-quantifying-realistic-sample-size-requirements-for-human-genome-epidemiology.9573/

Paul R Burton, Anna L Hansell, Isabel Fortier, Teri A Manolio, Muin J Khoury, Julian Little, and Paul Elliott. Quantifying realistic sample size requirements for human genome epidemiology Size matters: just how big is BIG? Int J Epidemiol. 2009 Feb; 38(1): 263–273. Published online 2008 Aug 1...

Background Despite earlier doubts, a string of recent successes indicates that if sample sizes are large enough, it is possible—both in theory and in practice—to identify and replicate genetic associations with common complex diseases. But human genome epidemiology is expensive and, from a...

R Jones, S Carley, M Harrison. An introduction to power and sample size estimation. Emerg Med J2003;20:453–458 The importance of power and sample size estimation for study design and analysis. OBJECTIVES 1. Understand power and sample size estimation. 2 Understand why power is an important...

good work, patients. Not sure the study was big enough to make any conclusions, but I am not sure I have the right data to know that (nor recall enough stats to do the right calculation). Although 383 is a lot for an ME study, genetic studies assess a huge amount of information and typically...