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Just trivial sleuthing again, but noticing that NIAID Director 'liked' this today and hopefully is following closely too with NHLBI/NINDS.

Moved post Has this already been shared? Science: "A protein that disrupts cells’ energy centers may be a culprit in chronic fatigue syndrome" New study offers clues as to how exhaustion could arise in people with ME/CFS—and potentially related conditions such as Long Covid...

Moved post Apologies, if this has already been posted

I attended one of the regional RECOVER Town Halls last night on the clinical trials. Sharing below if interested. Some more info embedded in the thread.

I sent the STAT News reporting to her yesterday, about NIH's underwhelming RECOVER trials. She replied back "Thank you for the outreach. Really hope we can make some progress ASAP as I know many are suffering." Just sharing for visibility.

Obviously very very trivial again but I did see that Dr. Marrazzo (new NIAID Director) “liked” this below yesterday on Twitter from Madeline Miller who wrote the Washington Post feature on LC yesterday.

Just sharing this S/O in Mass ME's August Newsletter today

Obviously just a trivial thing, but the new NIAID Director did "like" this yesterday on Twitter (I'm not calling it X...)

@Hutan Marrazzo was a PI at UAB for the RECOVER Initiative, also if not stated. "SARS-CoV-2 has been a challenge in so many ways, not the least of which is the conundrum of long COVID, or PASC,” said Jeanne Marrazzo, M.D., director of the Division of Infectious Diseases and lead investigator...

It appears Pfizer has just issued a RFP (Request for Proprosal) Pfizer Independent Medical Education RFP Updates in Post-COVID Conditions: Potential Causes, Assessment, Testing, Management, and Ongoing Research 'Through this RFP it is our intent to support educational programs on post-COVID...

Star Tribune: 'Budget that expands Minnesota health care, abortion access, heads to governor' 'The HHS bill includes research into long COVID and support for people suffering from the post-pandemic condition.' If this is the Senate version of the HHS bill that has passed to the Governor's desk...

Interesting. It doesn't let me read it here in the US unless I subscribe.

Anyone have access to this Boston Globe piece?

(fairly unrelated) Just wanted to state that Dr. Whittemore (along with Dr. Koroshetz) is aiming to try to attend the May 11th Millions Missing event with the Minnesota ME/CFS Alliance & patient community I thought even in attempting in *wanting* to be present at that was a somewhat nice...

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...