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I believe they have data showing that patients who move more in some conditions, particularly surgery/injury in an otherwise healthy person, are doing better, but I'm not sure it isn't a correlation/ causation mistake. I haven't seen the studies. I doubt they considered people with ME and other...

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Looks like people could self-nominate. I don’t seem to know his handle, but Brian Vastag would be an excellent nominee for the Innovative Patient award.

I can’t work out whether anyone could nominate ME Action, S4ME, or other actual patient orgs, but perhaps some of our research and/or clinical places or individuals who listen carefully. Or non-patient advocates.

it’s towards the end of the day and I just saw this, perhaps there isn’t time and we should keep it in mind for next year. (Assuming it’s a regular thing) https://www.theberylinstitute.org/page/PXInnovationAwards

Low NK cell function is seen in a lot of conditions. It’s not a specific biomarker. However, there’s precedent for using non-specific biomarkers in combination with clinical picture and differential diagnosis, in other diseases when specific biomararkers don’t yet exist, as part of a...

I agree. Another example would be EDS. Genes have been found for many types (seven?), but some of those genes have an unclear relationship to collagen. There’s a very large group, the hypermobile group, most of whom still have no gene identified (although it has an autosomal dominant form of...

I hope lots of doctors watch. When I saw the training video I was blown away by how good it is. Thanks for all the work that goes into this project!

The news article I cited at the end of post #6 gave the 270 number, spoke about how the real number could be larger, and also gave the other numbers: “In total there were 1,877 absent students for more than three months in the previous school year. A total of 735 had other diagnosis than ME and...

Do you mean the two peaks study? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4189623/ Or are you looking for a statement from the PM? There’s something possibly on video. Pretty sure it includes an apology. Didn’t find that, but here’s an article about a school absence study...

I’m happy they’re looking for the teen peak, but do we know whether NASN or University of Minnesota knows anything about how to diagnose and support M.E. patients? Are they working with OMF or people from ME Action?

Terribly unethical and yes, abusive.

One of the comments points to this article, which says that people may still have something to say about a paper outside their field of expertise https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1574-8 I agree. It doesn’t take a “CFS” specialist to know that PACE...

Thanks. @JaimeS for looking things up and for sharing my impatience with the “oh it’s deconditioning” story. My doctor is new to me and generally I like her, just she doesn’t understand my diagnosis yet, but I think we can get there, if the rheumatologist I just saw didn’t ruin everything...

Hand grip strength and other muscle testing (yes, even “lift against my hand”... seems ok must be normal—even from a doctor who doesn’t normally do such evaluations) is used as part of a way to evaluate for medical necessity for a powered wheelchair. So I a little bit doubt anyone would get...

A lot of clinicians will ask the patient to squeeze their hand and I have always wondered about the reliability of that. There’s also a device that can be used, apparently it’s called a hand Dynamometer. Looks like this...

Sure :) There’s a test that can show how much is liver, intestine, bone, or placental. It’s called alkaline phosphatase isozyme. (There are some causes of ALP elevation, like heart failure, that I don’t think the test can detect.) We did that test and it showed bone. (Did some other tests, too...

oh no. Thanks for saying the name of someone who would be there. Hoping for best outcome

So I have this new lab result, a mildly high alkaline phosphatase (ALP). My doctor ran some tests, and thinks that because she was able to trace the enzyme to a bone type (yes, apparently bone can cause a liver enzyme test to be high), and it’s not parathyroid, it must be deconditioning. I...