some ME/CFS patients, like myself, do find problems breathing in their symptom profile. I can't tell how common this is in ME/CFS: some people...
It would be nice if someone could arrange a conference so those at OHSU could meet and hear the doctors that are studying this disease in good...
One also needs to know how to put on and take off the mask. Use the earloops to put the mask on and off. If you have a stash of isolation masks...
@Forbin that's a cool chart. I'll have to look up my onset year. I had "flu" but I wasn't given a flu test and I recently learned that even during...
I heard about people in China who are "recovered", test negative, then positive and have "unrelated" symptoms. Type of symptoms unspecified....
On the autism paper, I glanced briefly at the abstract (not well enough to do more atm), and saw it was collecting experiences only from parents....
I think you meant me by that. :) Thanks for the tag. I will look at the paper sometime when I have a chance, hopefully. I like what you said...
My understanding of the point of "lived experiences" is that it's to capture the sort of information that researchers should have looked at but...
Oh definitely I wouldn't want to modify it more than that, especially after promising to use their wording. But that seems a good change. :)
I'll also draw a parallel to M.E. It's kind of like, when we want to discuss M.E. and the C.D.C., is like, Oh, yeah, great topic: "chronic...
That's probably true, too, but it's also true that there's over-policing of Black people. This actually may begin in school. As you said, the...
There are many kinds of bias. Nobody disputes that there are other kinds of bias. Someone can even have several types of bias applied to them at...
I don't follow. ME patients are of diverse race/ethnicity. (Even if mainly well-off white middle aged women are getting diagnosed, we know from...
Yes, I believe this difficulty has been discussed as some of them haven't been to the Gulf, yet still appear to have GWI. A rename was discussed,...
I am wondering how they intend to assess: ""What are the benefits and harms of diagnosing ME/CFS, vs. non-diagnosis?" By using randomized...
https://www.clinicalstudydatarequest.com/Help/Help-Review-of-Requests.aspx Here's a link to how requests are reviewed. Stage 1 is conducted by...
excellent work. Thank you. Hope you have a good rest.
I didn't know that. Thanks for saying. All we need to know about the trial is in these sentences. Symptoms are entirely vague, respondants are...
I had another thought. Sometimes after an appointment I get a letter in the mail, or nowadays a link to a webpage, with a survey from a third...
As far as "how yer doin'" questionnaires, I think at this point these are most useful for keeping a record of signs, sympoms, and practical...
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