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I found a really interesting comment on the article. https://jamanetwork.com/journals/jama/fullarticle/2737854?resultClick=1#comment-wrapper Someone reports: 1) they themselves have an adrenal condition and they do not think HPA stuff explains ME/CFS (I happen to dislike this theory myself...

They ought to be trained in massage, and (in the US) massage from a massage therapist is not covered under Medicare (but it would be if delivered by a physical therapist--because Medicare is decided by stuffy bureocrats who don't understand things and don't want to cover anything that "sounds...

I think they think people are doing 100%-200% more than usual to cause PEM, rather than 1 or 5% extra. Because they have no idea what it's like to be ill with this and PEM just doesn't compute to them. They woudn't themselves be sick in bed unless they did really unusal activity, so we must be...

I agree that the ratio is not necessarily convincing, but I am thinking that doctors expect it in women and not in men, so more women get diagnosed (and computers learn to expect this so predict that outcome). When we know the vast majority of people are undiagnosed (and in other studies...

There's a thing that's a strategic disease plan. NIH writes these for other diseases. We should lobby for one. Some of them have benchmarks by timeframe. Mod note: Part of post moved to new thread.

I heard (from where I cannot recall, just that it was indirect, but from a source I deemed credible for this type of information) that researchers who submitted papers there got rejection notices saying that NEJM didn't publish on the topic of CFS. They may since have changed their mind, or may...

This is obviously not occurring, as people are not getting diagnosed. Non-diagnosis is the biggest diagnostic challenge right now. You can't really go off a self-report rate in a disease where people are not getting diagnosed and are unlikely to suspect they have it unless they have a relative...

I think that 1) if there are researchers and clinicians active in the field who think it's a worthwhile field and are being respectful of patients and 2) the patients are endorsing the criteria (even better, being included, but at least endorsing the result) and 3) the criteria is managing...

https://www.congress.gov/bill/116th-congress/senate-resolution/225/actions There's also a link to the House bill so one could check how that is proceeding and US people could see whether one's own Rep has cosponsored.

I agree with this. and I also agree that one should be cautious generalizing from a handful of cases to all of ME. Just one also would do well to be cautious saying some other diagnosis is "contested" (people might read "bogus"). ME isn't the only disease that has a lack of access to medical...

awkward wording on my part, as it appears to exempt myself. I also have made errors.

awkward wording on my part, as it appears to exempt myself. I also have made errors.

unfortunately not. Could be an issue with certificate standards?

I think it's too soon to edit. Emotions are running high and I have seen all sorts of logical errors in the discussions, even from people who generally have good logic. I would wait a while until things have settled down, and people have had a chance to process all this.

I think it's too soon to edit. Emotions are running high and I have seen all sorts of logical errors in the discussions, even from people who generally have good logic. I would wait a while until things have settled down, and people have had a chance to process all this.

I wish there were one more category for ME: fluctuating but overall growing worse. edit: clarified that I wanted the category for ME (not MS, as I don't know if they need this or not)

I understand that you were discussing your own paper, but regardless of who wrote it, a criticism needs to be specific in order to be of any use. I am not entirely sure why you are criticising the design "try to prove we were wrong about x." Regarding valve things, this is what I can find...

I can't say for sure as I am not Rodney Grahame, but I would imagine this would be because Beighton score is one of the components of Brighton criteria (or else that was prior to 1998 or whenever Brighton first came into use?). Although some rheumatologists do indeed use Beighton for diagosis of...

Thanks. :) That was the cardiologist. Getting up is hard for me, too. Moving is hard, but not as hard as standing still. Squatting or bending down is also hard. That's awesome that there's a neurologist in your area that other patients like. I wish you best of luck finding some help. The...

I don't have POTS right now, but I can't tolerate standing nonetheless. I can sit up more than other times. I am using fludrocortisone, which probably helps with the sitting up and the not qualifying for POTS (I stopped the medication only for 3 days prior to the tilt test). I have dizziness...