Search results

Thanks to @Binkie4 for posting that long list! (and thanks to others who posted) I can't come up with a list of symptoms myself. But I thought I'd post a reminder that there were multiple patients who were shown, mentioned, or interviewed in the film. Shouldn't any list of "symptoms from the...

I think it's important to separate the discussion of a systemic issue (like sexism) from the discussion of what happens to us as individuals (doctors often treat ME patients badly). These topics are related but they are different topics. There are many patients with ME who have been treated...

Hi @voner I'm still not feeling up to joining this discussion, sorry. But for those who do feel up to it, the Feb. 2015 IOM report is another source of data. Go to this website to download a PDF of the full report - http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx (can also be...

I appreciate that, but pretty much anything I post now is going to based on documents that I already referred to earlier. And I'm not sure how that will further the discussion. You said: If the information that I posted earlier is not reliable then anything I say is going to be even more...

Bump

@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...