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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...

Also, anyone can call their senators, not just folks with ME! I'm hoping to recruit some friends and family members to make more calls.

By the way, the call script says "If you are up for it, you can even call each day during the week and repeat the same important message!" So I hope to make calls again tomorrow! :)

Most of us are not able to go to Washington, DC for this advocacy week. But there are still ways to make your voices heard! Today I called both of my senators and then tweeted about it: https://twitter.com/ahimsa_pdx/status/1113509333101187073...

@WillowJ I found a site that lists many brands of toothpaste without SLS (sodium lauryl sulfate): https://slsfree.net/sls-free-toothpaste/#sls-free-toothpaste-brands I know you did NOT mention SLS-free as a requirement but I thought I'd pass it on just as an additional list of options to look...

Short answer: I only use toothpastes without sodium lauryl sulfate (SLS). I don't seem to have sensitivity to any other ingredients. Brands that have worked for me include Spry and Sensodyne (Kroger makes a generic equivalent that is cheaper). It can be hard to find a toothpaste that includes...

Bumping this so more folks will see it. Deadline is Wednesday, March 27. If possible, ask your friends and family to contact their US Congress representatives, too! I will be working on email to several family members later tonight. I sent email to my Congress rep and then did a follow-up call...

ME Action has published a press release from the Workwell Foundation: https://www.meaction.net/2019/03/23/analysis-shows-blunted-heart-rate-contributes-to-activity-intolerance-in-people-with-me/

I don't have any more information, and can't answer the question asked by @Snowdrop - but I thought I'd post a link to a news article about this paper just in it has any helpful information. https://www.sciencedaily.com/releases/2019/03/190318084127.htm I thought this was a good sign (so many...

I actually remember this study (Yay, my brain actually worked!) because I often link to the MEAction article you wrote on it: https://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/ Here's a link that goes directly to the Jason study...

I read a book some years ago called Phantoms in the Brain (by V.S. Ramachandran and Sandra Blakeslee) that discussed phantom limbs and many other neurological issues. It was published in 1999 so some info may be out of date by now. With my bad memory I have forgotten most of the book but I...

This is not specifically about sleep but this chart shows that the menstrual cycle does make symptoms worse in many ME patients (click to enlarge image) link to tweet https://twitter.com/TomKindlon/status/1094380384593330178 More detail in this post -...

Same for me. Overexertion always leads to worse sleep. Resting for a few days makes my sleep better (not great, but better). But I didn't vote because the poll is about falling asleep. I never have trouble falling asleep at night. [ Well, almost never. Very rarely something will keep me up but...