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Agreed. I think subjective measures of pain, nausea, dizziness and so on are just as important as objective measures of activity or tasks completed (or whatever objective measures are used to show improvement). I don't claim to know how to measure these things! But thank you, @Robert 1973 , for...

I may be misunderstanding something. Does the "we" in this sentence mean ME/CFS patients? Can you help me understand the need for elevated heart rates? Maybe it's different for different subgroups of patients? My experience is more like @Subtropical Island and @fds When I first started to...

For a small event it went well! I'm not sure whether we actually educated many new folks about ME. I did hand out a fair number of bookmarks but not very many information sheets. I think I may have educated more people in advance of our event when I was trying to put up flyers about Sunday's...

Merged Open Medicine Foundation (OMF) posted this video on twitter, a slideshow of the photos displayed in Times Square on May 12th:

Michael VanElzakker is on twitter. He posted this just yesterday: https://twitter.com/MBVanElzakker/status/1126663767587262467 PS. His twitter account has a lot of other posts, not just for ME/cfs research. Just wanted to provide some info for anyont who might follow that account.

Thanks for all the ideas! I'm definitely leaning toward wording that stresses the idea, "Tomorrow it could be you!"

Hi folks, I went to this page just now and the OMF link was wrong. I clicked a few of the other links, and they seemed okay, but I don't know for sure. Does anyone have a more recent list of websites of groups doing ME/CFS research (and also advocacy) where people can make donations? Possibly...

So true! I tried to get at that idea when I said, "... what would draw people walking into the library over to our table? Any ideas?" I do realize that I'm trying to draw in folks who know little to nothing about ME. And even those who think they know something probably "know" the wrong things...

Thanks for all the ideas .... keep them coming! :heart: I like the idea of being a little bit vague on the poster - lure them in closer so they can pick up some info. :) FYI, my event is in the USA. While I absolutely love that quote from Carol Monahan, and other statements that came out of...

Hi, I have everything ready for the Sunday Millions Missing event except one item. I want to create a poster to put up near our table. I ended up getting a tri-fold display board that will stand on its own (Digression - I was going to use plain piece of poster board but when I tried leaning it...

I get stomach cramps randomly. And I mean stomach - much higher up - not intestinal cramps, as far as I can tell. My stomach cramps are not as bad as the ones you describe. And they seem quite different in other ways. But I'll share what happens just in case it is helpful. The cramping hurts...

Bookmarks have arrived! :D (a bit early, I thought they'd be here on Monday) I think they turned out pretty good. Here's what they look like: I guess there wasn't quite enough light so the photos are a bit blurry. But I didn't want to use the flash since they have a glossy finish (flash...

Does a patient have to have low resting blood pressure to have some form of autonomic dysfunction? I don't think so but I could be mistaken. Or maybe there are different subsets of ME patients? I'm not a doctor, have no medical background, plus I have brain fog. So that means that I can't...

That was an interesting presentation. Thanks for sharing the link, @MeSci :) There were a lot of good slides, too many to include here. But here's one from near the end of her talk (at about minute 25) when she says that many problems in ME patients seem to point to autonomic dysfunction. I...

Hi @Cinders66 - I just wanted to let you know that the hashtag is #MillionsMissing not #MissingMillions. Sorry I don't have any input on the main topic of your post.

I just checked the announcement on the ME Action website and 2 attendees have already RSVPed! Hooray! :) https://my.meaction.net/events/millionsmissing-visibility-action-portland-oregon/

Well, I put in an order for bookmarks today. I sure hope they turn out okay. :nailbiting: I know the design is not all that great but I do hope I don't have any typos or errors like that. I feel like I proofread it 1000 times so I hope it's okay. I had my husband look at it, too. Crossing my...

Thanks for your answer. :) I had the impression that the tilt table test was pretty mainstream test used by cardiologists (electrophysiologists?). Even NASA uses it. A lot of the info I've read about the tilt table test doesn't mention ME or CFS. I don't understand all the medical issues...

I tried hard to explicitly exclude ME patients in my original question. (i.e., "I'm not talking about testing for ME patients but just in general?") I'm also not asking about when or how doctors should order autonomic tests (for ME patients or for any other patient) because I realize that is a...

Not if patients don't even know that standing still might be contributing to certain symptoms. I admit that I was clueless. It never occurred to me to *avoid* standing ( see my earlier post on this thread - https://www.s4me.info/threads/orthostatic-intolerance.8975/page-6#post-158730 ). Only...