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I can't see the twitter link in the previous post. I'm not sure whether it was a mistake (not posted?) or whether it's a problem on my end. At any rate, I'm posting this twitter link on Warren's disability policy just in case others are having a similar problem...

Yes, good point. Some machines will inflate to a really high pressure (210? 220?) that hurts. You can get machines that will allow you to set that initial pressure to a lower number. I think the newer ones are smarter and will adjust dynamically depending on what they are measuring but I could...

By the way, I have not watched this myself yet. I have trouble watching long videos I do better with reading and even then have trouble absorbing and understanding things!

The video from the Action CIND webinar on Dec. 11th, featuring speakers from Workwell Foundation, is now available on vimeo (about 1 1/2 hours long). Why Working out Doesn’t Work. Answers from 20 years of cardiopulmonary exercise testing (CPET) in ME/CFS I don't think the video will play if...

(I meant to include this in my previous post) Thanks for the clarification, I was thinking you wanted a general discussion of sexism in medicine and was confused why you would look for evidence for that in an ME patient forum.

I thought the main topic of this thread was an article on the general topic of sexism in medicine, not specifically sexism when it comes to ME patients? That Guardian article did not mention ME/CFS. And this thread is in the forum marked "Health News and Research unrelated to ME/CFS." Maybe I...

A reasonable point, but I have a question. I hope this does not come across the wrong way. Surely there are better ways to find out whether there is any evidence of sexism in medicine than to ask folks on an ME patient forum? Patients here may have some info (eg, I posted a link to a book) but...

Absolutely true. Thanks for mentioning it.

I think it's important to separate the discussion of a systemic issue, like sexism or racism, from the discussion of what happens to us as individuals. Yes, both men and women (and non-binary or gender fluid patients) are sometimes treated badly by doctors. But that doesn't mean there are no...

I think a doctor (cardiologist?) who has experience with autonomic system testing (eg. tilt table testing, lower body negative pressure testing, etc.) might be able to answer these questions.

It would be great to have more studies! But at least the NIH is doing a study now, referenced above - https://www.clinicaltrials.gov/ct2/show/study/NCT02854683 Can you explain a bit about the harm you're concerned about? Anything, even aspirin or acetaminophen, can cause serious harm in certain...

Merged thread @Ben H created a video "WHY BEN SUPPORTS OPEN MEDICINE FOUNDATION" as part of the 2019 Project for Awesome contest. If you vote for this video then OMF may win funding from this project. http://www.projectforawesome.com/watch?v=YrbTKd3C41I Voting is pretty simple. You need to...

I found a lot of references to orthostatic index in autonomic research studies but it was hard for me to find how it is measured. After looking for quite a while I found this equation in an appendix: Assuming this is the same orthostatic index (I hope there's only one?) this is an equation...

Good point. I have a question that I hope makes sense. Is the placebo effect possible when it is an involuntary response? Just as a silly example, if a patient wants to show good reflexes can they make their knee respond to the reflex hammer more quickly? Conversely, can they suppress the...

Thanks, I was hoping you'd look at this thread! Would it be possible to create a dummy fluid that would look and taste very similar to ORS? That seems hard. I'm assuming it would be easier to make a dummy IV solution. But even aside from lack of a double blind arm, I thought it was interesting...

It's not water. It's oral rehydration solution (ORS) - water mixed with salts (sodium, potassium). Also, notice how patients with POTS respond to ORS vs. healthy controls (no response): "Neither saline nor ORS increased orthostatic tolerance in untreated controls (P = .46; n = 15), whereas...

I agree. My guess is that the blogger is conflating two studies: this study, which was done on patients with OI & POTS, and an NIH study which includes ME/CFS patients. See https://www.clinicaltrials.gov/ct2/show/record/NCT02854683 But I don't think there are any results posted from that...

Study is behind a paywall but I think this blog post is about either this study or a similar one. https://zebrapit.com/2019/10/30/dysautonomia-study-ors/ But it's confusing since the overview for the study that I posted does not mention ME/CFS at all, and this blog post does, so I could have...

The Benefits of Oral Rehydration on Orthostatic Intolerance in Children with Postural Tachycardia Syndrome Marvin S. Medow, PhD, Kenneth Guber, BSm Shilpan Chokshi, BS, Courtney Terilli, BSN, Paul Visintainer, PhD, Julian M. Stewart, MD, PhD...

Article about dysautonomia (including discussion of POTS) in USA Today: https://www.usatoday.com/story/news/health/2019/11/19/dysautonomia-leaves-millions-undiagnosed-barely-functioning/4237075002/ Edit: I wasn't sure whether this might be considered "related" to ME/CFS (since there's quite a...