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Good section about the "all your tests are normal" problem that many of us have run into.

Here is a summary of the CARE for Long Covid Act, from Senator Kaine's website: https://www.kaine.senate.gov/imo/media/doc/care_for_long_covid_act_one-pager10.pdf (the file name says "one-pager" but it's actually 6 pages) And this is the full text (23 pages)...

MEAction is asking for folks to decorate pillowcases to be used as part of the Millions Missing 2023 art installation -- rows of cots with pillowcases attached -- on May 12: https://millionsmissing.meaction.net/pillowcase-decoration-project/ More information at the link, but here are some...

From Solve M.E. - a call to action for Advocacy Week: "Ask your Members of Congress to support the CARE for Long COVID Act!" https://p2a.co/Xpr5nVf This link goes to a form that sends an email to your government officials with one click. If you like you can modify their sample message before...

In counties with more Black doctors, Black people live longer, ‘astonishing’ study finds https://www.statnews.com/2023/04/14/black-doctors-primary-care-life-expectancy-mortality/

I don't think anyone has posted this article yet. From Nieman Reports (please delete if it's a duplicate). Three Years Later, Covid-19 Is Still a Health Threat. Journalism Needs to Reflect That Too much coverage minimizes the health risks researchers attribute to the virus...

Adding a link for the "Examining the Working Definition for Long COVID " website. https://www.nationalacademies.org/our-work/examining-the-working-definition-for-long-covid This page has a list of upcoming meeting and recordings from past meetings.

From an #MEAction email: Millions Missing 2023: Watch Livestream of Press Conference May 12, 2023 11:00 am to 12:00 pm Pacific Time The email is here (has more info on how to get involved): https://mailchi.mp/meaction/nih-comes-up-short-once-again-2270337 A similar announcement is also on...

Posted a few days ago, part of their campaign for May 12th (World ME Day): Send a press release about World ME Day to your local news outlets https://worldmealliance.org/2023/04/send-a-press-release-about-world-me-day-to-your-local-news-outlets/

From a Solve M.E. email - webinar on sleep issues is scheduled for Thursday, April 27 at 11 am Pacific time: Announcement here: https://solvecfs.org/event/effects-of-long-covid-and-me-cfs-on-sleep/ Register here: (this link includes a time zone conversion tool)...

From a Solve M.E. email: Announcement here: https://solvecfs.org/event/38107/ Register here: (this link includes a time zone conversion tool) https://us02web.zoom.us/webinar/register/WN_WE2pepSrQoSmx420dn_A4w#/registration Video from the 2022 EmPOWER ME session is here...

Article in The Nation (paywalled): The Long Covid Revolution by By Fiona Lowenstein and Ryan Prior https://www.thenation.com/article/society/long-covid-disability-policy/

(Hi @Dolphin - using your previous post as a template to add a post for the April 18 session :)) Free, professionally-facilitated online support group: https://batemanhornecenter.org/event/online-support-group-46/ Date/Time: Tuesday, April 18, 1 PM Mountain / 3 PM Eastern / 8 PM in Great...

The cost for this 2-day event is $595. I don't recognize the name of this group but with my bad memory that's not surprising. Anyway, here's the website for the Personalized Lifestyle Medicine Institute https://plminstitute.org/ I see the name Jeffrey Bland, PhD, on the home page. I'm a bit...

MEAction, along with several other patient organizations, have written to the DEA (Drug Enforcement Administration) to oppose a new rule restricting telemedicine appointments when prescribing certain pain medicines. === ME & Long COVID patients need telemedicine prescribing flexibility...

Many thanks for doing those transcripts, @RedFox ! :) Bookmarking them for later.

Interesting! This study is about whether a longer tilt table test is needed. But I wonder if these same factors - pressure recovery time (PRT) and heart rate variability (HRV) - would also be useful for deciding whether a NASA lean test is sensitive enough vs. needing a tilt table test? I...

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 for the folks here. Just FYI, their profile lists their location as "sheffield, south yorkshire, england" in case that helps. Here's the link...

Long COVID: Incidence, Impacts, And Implications https://www.healthaffairs.org/content/forefront/long-covid-incidence-impacts-and-implications (I added extra line breaks in these quotes) A couple of quote that mention ME/CFS: