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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 (ME/CFS community aware people) talk like no one has it and some talk like everyone has it. I'd like to see further study.

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 ways. OHSU is very regionally influential, and could, if they wanted to and accessed the knowledge available, carry out research themselves.

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 and are using those, pinch the nose piece so it fits closely over your nose. Whatever mask you have, fit it as closely to the face as possible. Don't...

@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 a flu outbreak, some of the people can have other illnesses, like cytomegalovirus. @ everyone, thanks for all the links. I wanted to compile them...

I heard about people in China who are "recovered", test negative, then positive and have "unrelated" symptoms. Type of symptoms unspecified. wait, what? they said this to the public? wow. Terrible, horrible way to get it but I hope it brings more attention and funding.

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. While I think it's fine and sometimes desireable to check with families, skipping asking the patients at all would not count as patient centered or...

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 about joining experiences with appropriate scientific method. (there are, of course, spaces in between before this has been done, and people improvise...

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 didn't, because they didn't feel it was important to have patient input into what was important and just went off their own thoughts, impressions...

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 unwellness." And we're like, Um, no, that's not... (sigh)... you don't get it. :headdesk: And then we start to worry that M.E. would get erased. Of...

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 data points aren't unbiased. http://www.justicepolicy.org/news/8775m

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 the same time.

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 population-based studies that everyone gets ME, including in other countries. Military doctors are maybe a bit less biased in diagnosis, however, and...

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, parallels were drawn to diagnoses given in other wars (some of which were likely PTSD, so not all the same thing). I'm not up to locating the papers...

I am wondering how they intend to assess: ""What are the benefits and harms of diagnosing ME/CFS, vs. non-diagnosis?" By using randomized controlled trials, or if those aren't available, cohort studies. Even though they have changed "harms" to "beneifts and harms", it's still a slanted...

https://www.clinicalstudydatarequest.com/Help/Help-Review-of-Requests.aspx Here's a link to how requests are reviewed. Stage 1 is conducted by Wellcome Trust. Stage 3 is conducted by the Independent Review Panel, which is administered by Wellcome Trust. Lots of room in Stage 2 for study...

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 working full time, and inclusion was done entirely by questionnaire, no differential diagnosis. Additionally, the authors believe there's an...

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 party assessor. They want to know about my clinic visit and they ask all sorts of things like: How easy was it to get an appointment? How long did you...

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 difficulties, but I also think it's a good thought to develop ME-specific questionnaires so they can be used in efficacy assessments at a future time, or as...