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@Jonathan Edwards - I appreciate you sharing your thoughts. I thought I was sharing helpful information. But in the future I will refrain from posting any links to medical information. I will leave that to people who have enough mental/physical energy to debate all the medical issues and...

That's strange. I know that autonomic specialists have used some different terms and definitions. But I've never seen Orthostatic Intolerance defined as "reduced brain perfusion." Do you have a source for that definition? For example, here's how the Johns Hopkins patient handout defines OI...

That's a fair point. After all, so many doctors recommended exercise for ME patients. And it was repeated in many official documents. The problem for me, as a patient, is how to tell what is misinformation? Especially when this information is not from fringe sources but comes from what appears...

I have no idea what is causing my orthostatic problems. And I completely agree that extra salt and water is a short term solution (and it only helps bit, nowhere near a cure). It's sort of like how it's easier for me to do things on an empty stomach, or when it's cold. It doesn't make my ability...

I happened to see this link today (browsing a new website about dysautonomia) so I thought I'd share it on this thread in case it's helpful...

This is a testing document, not a treatment document, but I thought it was good to add to this thread. https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf Related blog post: https://batemanhornecenter.org/learned-from-the-nasa-10-minute-lean-test/ An...

Here's another website that talks about dysautonomia: https://thedysautonomiaproject.org/ They have a book called The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients. I have not read this book so I can't comment on whether it's helpful. I...

Well done! :emoji_blush: I was expecting a much slower growth - did not expect this forum to grow so quickly! :emoji_clap::emoji_clap::emoji_clap:

I haven't read all the other replies yet but wanted to answer this while I was thinking about it. That sounds very familiar. I remember when I first got sick and the doctors were asking me about why I needed to sit down. And I tried to explain to them that feeling of "I HAVE TO SIT DOWN NOW."...

I forgot all about the night sweats! They were a lot more common in those first 5-6 years. Night sweats were kind of unpredictable but seemed to come with most crashes. I would wake up with my t-shirt soaked through, mostly in the neck and chest area, not the underarms. I'd have to get up to...

I mix up my own electrolyte solution. It started as an attempt to be close to what is in Pedialyte (but with a bit less dextrose) so it uses potassium chloride and sodium citrate along with table salt (sodium chloride). 1/2 teaspoon salt (sodium chloride) 3/8 teaspoon sodium citrate 3/8...

Another good overview document (with a lot more detail, and with references to many different medical studies) is this one by Dr. Julian Stewart https://emedicine.medscape.com/article/902155-overview#showall

I have found that this patient handout by Dr. Rowe of Johns Hopkins is a good overview document http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf (edited to add a brief extract)

I thought I'd start a thread where folks can post links to documents, videos or websites that have treatment suggestions for Orthostatic Intolerance. I hope this is not duplicating any existing thread that is in one of the library sections. I looked but did not see one. Also, by having this...

The November 5th session on volunteering has already happened. I'm not sure whether this session was recorded and is available online somewhere. I do know that ME Action has a YouTube channel. You could look through those videos to see if it's there...

Be careful... or I might start sending you a bunch of kitty photos via private message. :whistle::angel: More seriously, I'm looking forward to watching the videos but need to plan it for when I have some brainpower and won't be interrupted.

Thank you, @MErmaid :) Since I have an account at Washington Post (subscribe to them in addition to my local paper) I decided to write a comment.

Yes, I usually click New Posts to start with. But often I will go to individual forums that are less interesting to me and click "Mark Forums Read" for just that forum. It makes the list of new posts shorter and easier to skim. I'm not very consistent in how I read the forums, though:)

I often skip over this "other health" forum [limited energy] so I would have missed this thread if not for a mention of it in another forum. I have not watched the videos yet but thanks @Andy for posting them. I'll come back and read the comments after I've had a chance to watch them (which may...

I agree with part of this. If these words are used simply as an accusation, a way to feel better than someone else who may be ignorant about something, then it's not helpful. What's the point of making other people angry? But I think there are ways to talk about privilege in a way that teaches...