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A patient shares his experience with Long Covid, talks about peripheral neuropathy, mentions ME/CFS and dysautonomia. These are just a few of the points in the article, I didn't read the whole thing carefully: Long COVID has reached the ‘Russian Roulette’ stage in the US As the nation seeks...

Hi @JemPD - So sorry that I completely missed your earlier post listing things that didn't work on the web. :banghead::banghead: And thanks for posting to add all those other examples! I have run into cases where there's a cash bonus or credit for using an app (my reply is always "no thanks")...

I'm able to type short texts using the smartphone touch screen keyboard but it's slow. I have learned to rely on predictive text. And sometimes I can cut/paste from an old text. But mostly I just accept that it will be a slow process compared to touch typing. I don't hold the smartphone when...

Thank you @Michelle for using your limited energy to share your experiences. :heart: I absolutely agree that the $2000 cap on assets for SSI recipients is ridiculous and needs to be raised. And I agree that more housing subsidies are needed. Back to my assessments for SSDI, one of my medical...

I'm glad Osborne found a platform to talk about Long Covid and ME/CFS. But I think folks should know a bit about James Coyne's past behavior, some of which is mentioned in this thread from 2018: https://www.s4me.info/threads/james-coyne-sued-me-for-cyberbullying.6357/ He never attacked me...

I meant to ask you about this comment earlier but I forgot. I was reassessed several times (3 times? or 4?) after my first SSDI approval in 2000/2001. (application made at age 39, age 40 when it was approved) These re-assessments happened every 3 to 4 years even though I had not improved at...

I saw this post by @MEFoggyDog on Mastodon so I thought I'd share. This same hashtag - #MPDoYourJobForME - is also being used on twitter so you can search for it there. I did not watch the whole video, but the title of the document linked in the post is: Politician's Guide: How To Advocate...

Twitter thread by Todd Davenport talking about this paper:

Solve ME sent out email reminder for their next webinar: Full details and registration link here: https://solvecfs.org/event/cdc-update-recent-strides-in-long-covid/ Find the time in your time zone here...

@RedFox - So true, there are a lot of barriers (or "ordeals") in the US system. A short quote (my bolding) from an old NPR article that I read last year: Full article: High rents outpace federal disability payments, leaving many homeless...

Exactly! Even while sitting down conversations can be hard (depends on how I'm feeling, the topic, so many factors). But it's impossible while standing up. Pre-pandemic, when I went to stores more often, I had the hardest time with those employees who greet you when you come in and/or ask if...

A reminder for US folks who want to participate in Solve ME's Advocacy Week = April 17 - 21, 2023. The registration deadline for in-person and Zoom meetings is Sunday, March 26. Here's a schedule summary: Registration link for In-person Senate Meetings...

I am not going to include a link but Washington Post columnist Dr. Leana Wen, who has written some pretty horrible opinions over the last few years, actually wrote that more disability in the form of Long Covid will simply become our new normal. So, let's not bother trying to avoid COVID and...

From The Washington Post: Long-covid symptoms are less common now than earlier in the pandemic Regular Link: https://www.washingtonpost.com/health/2023/03/18/long-covid-less-likely/ Gift Link (no paywall for 14 days): https://wapo.st/3n74Mjl I didn't see any mention of ME/CFS. I wasn't...

Description from the NASEM website:

March Newsletter from the Massachusetts ME/CFS and FM Association: https://www.massmecfs.org/component/civicrm/?task=civicrm/mailing/view&id=1237&reset=1 Includes information on their "Sunday Conversations" series (see previous post) and a series of Young Adult Support Group meetings...

Here's the next event in the "Sunday Conversations" series: "The Broken Mishkan: Performance and Community Conversation with Sara Nesson" Sunday, March 19 4 pm Eastern Time / 1 pm Pacific Time Find the time in your timezone here...

Thank you for the offer, so kind of you! EDIT - Deleted my comments about attaching files. I posted without seeing the message saying the file was too big.

New episode available (Season 2, Episode 8) with guest Cynthia Adinig, a marketing specialist turned Long COVID advocate. https://www.meaction.net/chronically-complex-meaction-podcast/

Here's the #MEAction web page with links to all three Pacing And Management Guides and a brief description of each one: https://www.meaction.net/resource/pacing-and-management-guide/