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In Minneapolis, MN this week, for World ME Day. MN is recognizing on May 11th as their community is meeting that day (so they can partake in federal/international efforts on the 12th). Just wanted to share. I believe several staff members representing Minnesota Senators & Representatives...

Sharing from a local advocacy update in MN, @SunnyK [mods feel free to move, but wanted to share to update] MN legislation is meeting over the next few days & weeks to determine what is funded & at what level in the omnibus bill. They are meeting to discuss the House version (HF2930) &...

Agreed, @belbyr. Who would've thought NIH & Mayo Clinic would be the ones to at least (finally) help drive some much-needed change (albeit after much patient advocacy). In 2017, I got diagnosed with ME at the Mayo Clinic and (to me, at least) they hardly believed ME was a biological disease, or...

Sharing, being time relevant, from #MEAction today, @SunnyK (mods, feel free to move if best fit elsewhere): "#MEAction & Mayo ME/CFS Algorithm is Live!'' 'Last fall, #MEAction & Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the...

Sharing from Nath (Part 2 below Part 1):

I’m biased, but there has been a ton of MN advocacy here in the last few years @SunnyK. Happy to also see the recent news that Dr. Stephanie Grach of the Mayo Clinic (Rochester, MN) became the 21st member of the US ME/CFS Clinician Coalition (the only MN-based clinician on the list). Local...

Following up from Dr. Whittemore this morning on the NIH ME/CFS Intramural Study: "The paper has been submitted and is under review! Vicky" Also FYI I was told by Dr. Whittemore "the journal is confidential until the paper is accepted for publication." Tagging @B_V for visibility.

Last night, 3 ME patients & a ME/LC expert physician testified at the Health and Human Services Finance and Policy Committee in the MN Senate. They testified in support of Governor Walz’s Long COVID budget proposal. Their testimony was reinforced by a bevy of supportive written testimonies...

Long COVID exercise trials proposed by NIH raise alarm "Advocates ask the US biomedical agency to rethink the design of its RECOVER initiative, citing possible harm and funding waste." "As researchers find out more about long COVID, it has become clear that many people with the condition meet...

3/1/23 by Dr. Anthony Komaroff, 'Does COVID-19 damage the brain?'' "Finally, the lingering symptoms of fatigue, pain, and difficulty thinking that can last for several years after COVID — called long COVID or post-acute COVID syndrome — may well be caused by ongoing low-grade brain inflammation...

Just quickly boosting coverage of what the ME/LC patients in Minnesota have been tesifiying in support for: 'Gov. Walz budget proposal seeks $6.3M for emerging long COVID crisis. The funding is proposed to raise awareness for the condition and improve the availability and quality of care' And...

As Minnesota (USA) continues the fight for LC + ME equity, another ME advocate testified today at the MN House Health Finance and Policy Committee in support of Long COVID funding. Her testimony starts at 24:34.

Just sharing this note from Dr. Whittemore today on the Intramural Study (not to be a nuisance). Just FYI @B_V "I just checked and they plan to submit the paper for review within the next month. There have been many people who needed to review the paper at multiple levels at NIH which is what...

Also coincides nicely with the 2023 cover feature story for Minnesota Physicians Magazine, "Long COVID | Facing a shadow pandemic" "The impacts on health and well-being, communities, health care systems, the workforce and the economy cannot be ignored" "The complexity, uncertainty and evolving...

Sharing a recent legislative hearing (3/21/23) in Minnesota, USA on a State Department of Health bill that includes a Long COVID budget proposal. Two ME/CFS advocates showed in-person to testify for support. House Health Finance and Policy Committee 3/21/23 - Part 2 Some time-stamps from the...

Sharing the free article version here too "Long-neglected chronic conditions finally come into the spotlight" https://archive.is/bbq8m

Thanks for this intel, @B_V. Is it okay if I share with MEAction or other ME patient areas?

Dr. Whittemore of the NINDS said this on 2/13/23 of the ME/CFS Intramural Study (fwiw): “I just checked and they are finalizing the figures and then it will go for final internal review before being submitted. I’m told they are very close!”

Unable to access, would be curious to read. New Scientist: "Long-neglected chronic conditions finally come into the spotlight" 'Growing evidence that long-term conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia are caused, wholly or in part, by viral...

Posts moved from the Long Covid in the media thread Per Dr. Leonard Jason feature today from Newswise, it appears that there will be a ME/CFS cohort/comparative group included in the RECOVER Initiative. Newswise: "Researcher Leonard A. Jason pushes discovery on long COVID, ME/CFS" "He is a...