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Posted today (Jan 24 2018) by the ME Association. I thought this forum was a good one for discussion but if this thread should be posted elsewhere then please feel free to ask for it to be moved. I have not yet read this. And I can't join in any debate. No medical expertise plus "brain fog"...

Not for me. I have a really hard time defining PEM with words. A lot of the detailed PEM descriptions post on this thread are very hard for me to read and absorb so I hope no one here thinks I'm ignoring posts on this thread. I did read this thread and tried to understand what has been posted...

Possibly, but then why does that sentence start with although? The word "although" makes it seem (to me) like the reporter is trying to show how Collins' statement is an argument against criticism. Here's the full sentence again: Putting the word NOT in that sentence doesn't make it clearer...

This sentence is where I got lost. :confused: It seems like non sequitur. Criticism of the medical community not taking this illness seriously enough is unfair because the patients had such a dramatic drop in their ability to function? That would seem like a reason that doctors/researchers...

[Note to moderators: I think this belongs in general news - please move if this is the wrong forum] New article by David M. Perry (twitter handle @Lollardfish) talking about the film Unrest. https://psmag.com/social-justice/how-disabled-people-care-for-each-other-when-doctors-cant

Thanks. I'm certainly not planning on getting any of these tests! I thought they were meant as markers still being researched, not yet established clinical tests a patient should do, but perhaps I've misunderstood. Have you watched the video? I may have taken that chart out of context.

Hi @Jonathan Edwards - Does any of the more recent research by Dr. Klimas look useful? I can't understand any of it but here's a screen shot from a video Dr. Klimas made a few months back comparing ME with Gulf War Illness: There's another thread on this 12-minute long video ( see...

For my PBS station (OPB in Portland, Oregon) the first showing of Unrest will be Monday, Jan 8, at 11 PM. And then the rerun will be Wednesday, Jan 10, at 4:00 AM. Folks should definitely check their local stations for the correct time. So many of them are at 10 PM that I just assumed it would...

Interesting thought, and that last comment made me laugh out loud. Thanks for that!

Great post by Jennie, as always! Thanks for posting the link, @Andy So many achievements have already been made by Unrest film but here's the one that I would never have dreamed of in a million years: When that happened earlier this year it completely blew me away! (Edit - Oops, it's a new...

I know I'm way behind but thought I'd post this for folks who are having trouble watching this video. Here's the YouTube version, in case that helps It also has the option for auto-generated captions (click on the CC at the bottom). These are not as good as real captions (written and...

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...