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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...

One last comment - I may not be online much the rest of the week so please don't think I'm ignoring you. I have some stuff to do that's coming up, and then I'll probably rest/recover over the weekend. So if you post and I don't answer until next week please don't think I'm ignoring you! Thanks...

Hi @NelliePledge Good point about leaving off the year. I didn't include the year in my proposed design. And I will also have 2 or 3 different pamphlets / fact sheets from ME Action (haven't picked which ones yet). The bookmark was meant to be in addition to that. I wanted to hand out...

Hi @DokaGirl - you're not butting in at all! Anyone is free to use this idea and hand out bookmarks at their events! One good thing about bookmarks is that they are small and easy to carry. I just started checking online this morning so I'm still pretty early in the process. But it looks like...

My husband and I are planning a small #MillionsMissing event at our local library in Beaverton, Oregon. We plan to set up a small table in front of the library for a couple of hours on the afternoon of May 12. We'll hand out pamphlets and answer questions. I thought having some bookmarks made...

Is this a good thread to talk about individual events that are being planned and to ask for advice? Or would it be better to start a new thread to ask questions about a specific event that is being planned? Not sure which would be better for other forum members. Thanks!

Thanks, I appreciate the kind thought! Since my mouth ulcers went away with a change in toothpaste, and they have not come back over the past 15-20 years (versus happening almost every week), I'm gonna guess that sensitivity to SLS in toothpaste was actually the cause for me. I'm sure I've had...

Sorry, that sounds rough. :( I remember reading about that years ago. If I remember correctly the resting blood pressure starts out high but then has sudden drops. It sounds very difficult to treat.

I know it sounds weird, and I'm not sure that I can explain it properly, but it is possible to attribute symptoms caused by being upright to something else. It took me several years before I started to figure out that being upright (also heat) led to a certain set of symptoms like nausea...