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[note to moderators - should this be a new thread? it seems off topic but then I notice that some threads tend to wander a bit, so it may be okay?] Thanks for your reply. I realized after I posted (which is why I added the edit) that things can be more complex than they seem at first glance. I...

Wow, I hope that it is obvious that this forum is not meant for handing out specific treatment advice to patients! :nailbiting: I'm kind of surprised that anyone would think this. I hope we can discuss our own symptoms and personal experiences without having to write a big disclaimer "I'M NOT A...

Thanks for the post, @Sly Saint . I've never read that book but I do remember reading the article by Toni Bernhard. It's somewhat of a tangent but that phrasing - in the kingdom of the sick - reminds me of this quote by Virginia Woolf: And I recently read another book coming out soon called...

For those who aren't on the email list, the Solve ME/CFS Initiative group has updated their website. Here's the announcement from their mailing list: I only looked at it briefly but at first glance it looks better.

I've had ME/CFS since 1990 (I meet most of the diagnostic criteria that I've read). I've had muscle twitches ( fasciculations ) since the very beginning. This happens a bit less often now than it used to but I still get muscle twitches. They get worse after any exertion so they flare up...

Hi @It's M.E. Linda I don't know whether this is helpful but here's my experience. I have had two tilt table tests, one in 1995 and the other in 2003. Both tests found Neurally Mediated Hypotension (NMH). With just the tilt (no isoproterenol) my blood pressure plummeted to something...

The Unrest film team sent out a rather long email today. At the bottom of the mail there are links to three actions to take. I thought the action to call NIH Director Collins was worth posting in its own thread. The idea is for callers to ask him to watch Unrest and also schedule a screening...

I'm not sure this is related, but since we're talking about patents and drug pricing, did anyone see this NY Times article? https://www.nytimes.com/2018/01/18/health/drug-prices-hospitals.html

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 recommend the movie Hidden Figures. This was one of the rare movies that my husband and I saw in the theater (it happens maybe once per year) and for me it was worth it.

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...