Interesting! This study is about whether a longer tilt table test is needed. But I wonder if these same factors - pressure recovery time (PRT)...
It does sound like you and your daughter need more care hours. It's sad that these assessments are so uneven.
Someone on Mastodon posted a thread talking about their experience adjusting to having a carer come to their house. I thought it might be helpful...
Long COVID: Incidence, Impacts, And Implications https://www.healthaffairs.org/content/forefront/long-covid-incidence-impacts-and-implications (I...
A patient shares his experience with Long Covid, talks about peripheral neuropathy, mentions ME/CFS and dysautonomia. These are just a few of...
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...
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...
Thank you @Michelle for using your limited energy to share your experiences. :heart: I absolutely agree that the $2000 cap on assets for SSI...
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,...
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...
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...
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:...
@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...
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...
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...
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...
From The Washington Post: Long-covid symptoms are less common now than earlier in the pandemic Regular Link:...
Description from the NASEM website:
March Newsletter from the Massachusetts ME/CFS and FM Association:...
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