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...
correct. Nothing happens next as far as the specific resolution. The point of it is to get officials involved and knowing what the disease...
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...
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...
Anyhow my purpose in coming to this thread was to leave this here:...
There's no proper citation, but this blog claims Grahame and Brighton Beighton say it was designed for epidemiological research, and while it was...
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...
Just wanted to remind everyone that this paper exists. Reminder: there's a big difference between a subgroup with some specific features that may...
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...
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...
That's what I suspected. Thanks for explaining. This case actually illustrates that. The paper in the OP establishes a reference value that...
Do we know if there's any follow up or result from this?
Found a citation about the largeness of the studies:...
Paul R Burton, Anna L Hansell, Isabel Fortier, Teri A Manolio, Muin J Khoury, Julian Little, and Paul Elliott. Quantifying realistic sample size...
Background Despite earlier doubts, a string of recent successes indicates that if sample sizes are large enough, it is possible—both in theory and...
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...
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...
Separate names with a comma.
