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I use my laptop in a recliner and this type of laptop desk works well: It has a "bean bag" like base that molds itself to your legs. It also insulates your legs from the heat of the laptop. I got mine from Ikea (https://www.ikea.com/us/en/catalog/products/70403507/) but there are other...

For me, the main reason talking face to face is how difficult it is to put information into words/sentences in real time. A secondary reason is that I don't absorb things verbally very well. I do much better with visual input, things written down. It's a bit easier to talk to my husband...

Thanks for your reply - makes sense! I meant to respond earlier but forgot. I think when I posted my earlier questions my foggy brain was conflating two issues - rest vs. sleep: I think pretty much every ME patient feels worse after exertion, right? So they would see a difference in symptoms...

You're welcome. I'm sending a pair of my shoes to Washington, DC today. Well, my husband is actually the one taking the box to the post office ... but I packed the box! :D I don't think it's too late for USA folks to send shoes to Washington, DC or other locations. Please check first. I'm...

At first, the absurdity of this answer had be me laughing out loud :laugh::rofl::laugh::rofl: But then I wondered, maybe there's some deeper message that I'm missing? Does this mean that some people with ME have the exact same level of bad symptoms whether they rest or not? Whether they sleep...

For anyone who wants to find out if there's a MillionsMissing event near them here's the link: http://millionsmissing.meaction.net/ Since this is the USA thread I tried to post a link just for the USA. But the website does not work that way. Once you get to the page you can filter by country...

That's a good thought, @Michelle Another idea is to use the #DisabledJoy hashtag in solidarity with other folks who have disabilities. I know it's not quite the same idea as being grateful. But it does fight against the incorrect stereotype that folks with ME are always combative and...

I hear ya, @hellytheelephant ! Illness onset Jan. 1990 at age 29 for me. Then it was five years before I was even diagnosed. So, yes, it does seem unreal that there has been so little research and so little is known about ME/CFS. In fact, most of the time my medical care is like that old...

What @Joh said! :D I really like the emphasis on a specific "ask" or demand for concrete action being included in these #MillionsMissing events or demonstrations. Here's an excerpt from the ME Action "getting started" webpage: Obviously any demands need to be tailored to the specific...

Since my previous message is so long I thought I'd add this "getting started" link :) http://millionsmissing.meaction.net/get-started/ It provides a better overview than I did!

@Mike Harley Congratulations!:emoji_blush: And another £1000 for research! :emoji_heart_eyes:

Hi folks, I just got off a planning call with ME Action volunteers about how to coordinate #MillionsMissing events planned for May 12th. I was encouraged to register an event with ME Action. I learned that even though all I am going to do for May 12th this year is take some photos and share...

Since I haven't seen anyone from the USA post a comment I thought I'd say that this link worked for me. I only listened to a few minutes. I often have trouble absorbing information in audio format so I probably won't listen to the whole program.

I don't think I have this problem (a few minor stomach and intestinal problems but very minor compared to the symptoms that are disabling). But I saw this information from Dysautonomia International so thought I'd pass it on: https://twitter.com/Dysautonomia/status/984512915645632512 For...

:balloons: Bravo, and thank you, @Mike Harley ! :trophy@ Every time I see a photo of you holding up that banner it puts a big smile on my face! :D

The MEAction website has info on how to set up or participate in #MillionsMissing protests on May 12, 2018. https://millionsmissing.meaction.net/get-started/

This looks great and I appreciate all the work being put into planning ME/CFS Advocacy Day! I won't be able to travel to Washington, DC. But I'm looking forward to participating in other forms of activism on May 12th. :)

For those on twitter: https://twitter.com/RogueMamma/status/977782262379962368

This CNN article profiles several people who were unable to march (for many different reasons) in Saturday's "March for Our Lives" protest but who supported the movement in other ways. The second profile in the article is about someone with ME/CFS. I'm thrilled that this CNN article...

What I always find missing from these kind of pieces about learning how to live with ME is that they so often completely omit financial issues. I know that these are complicated issues, and few folks want to read details about SSDI vs SSI (benefits programs in the USA). But the issue of how...