“I am not going to let this administration move us back to a time when people were ripped out of their communities, ripped out of their homes,” @duckworth.senate.gov told Mother Jones. @juliametraux.bsky.social spoke with the senator about her plans to fight back.

View from the Trenches of #MyalgicEncephalomyelitis article discusses proposed changes by the US Gov that could lead to institutionalizing severely ill patients. open.substack.com/pub/colleens...

This is not making anyone "great"!

Thinking of the fathers in IL-15, my dad, and my grandfathers today. Long days at work never stopped Dad from showing up for us. Their example taught me love, hard work, and presence. Grateful for dads, granddads, uncles, father figures—and single moms. Happy Father's Day. ❤️

I react badly to gluten... interesting to see this study confirming the biological issues associated with gluten for people with #MyalgicEncephalomyelitis. Patient selection based on Canadian Consensus Criteria (& Fukuda).

Russell Vought has a plan for science, but so do we. Join the fight by taking action against the latest OMB grant funding proposal at the link in our bio, or go here 👉 zurl.co/lBQ4l #StandUpForScience #Science #OMB #Vought #SaveScience

For many of us with #MyalgicEncephalomyelitis that causes immune dysfunction, chronic UTIs can be a significant (horrible) issue. I have become allergic to antibiotics... would be good to know if this antibiotic is better tolerated.

Hmmm. I have trust issues with this "ME" nonprofit, but this issue is something I am concerned about.

I love Taipei🫶

This points out a few of the dots that need to be connected for #MyalgicEncephalomyelitis

Would like to see this everywhere!

Neuropathy isn't just a mild case of "pins and needles." It’s an electrical storm under the skin that makes you feel like you are burning & freezing at the exact same time. If your nervous system is short-circuiting today... 🩹💜 beacons.ai/chikocfm #fibromyalgia #mecfs #chronicillness

We need YOU to take action by leaving a public comment, calling your members of Congress, and telling everyone you know about this OMB Rule. SUFS Action Center here: fight2win.standupforscience.net

www.change.org/p/save-karen... #MECFS

A disturbing rundown of how gov websites are sharing information with several social media companies. "Alongside it ride Reddit’s pixel, Pinterest, StackAdapt, Amazon’s ad system, Google’s remarketing, and The Trade Desk" Maybe get passport in person. substack.com/@thedreydoss...

Latest View from the Trenches of #MyalgicEncephalomyelitis covers mast cell activation and treatments to manage hives. open.substack.com/pub/colleens...

Great to see they selected patients using the Myalgic encephalomyelitis International Consensus Criteria When researchers use the ME-ICC, I feel more confident the results likely apply to me as well.

C'mon @wired.com, you have a chance to do better. Instead of amplifying pseudoscience, why not talk to the patients living with #LongCovid and the researchers studying its biology? Levinovitz is not a physician, neuroscientist, or virologist. His expertise is in religion. Try again!

New peer reviewed research confirms people with ME/CFS have a consistent faulty cellular structure A faulty ion channel function is a consistent biological feature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ( #ME/CFS), providing long-awaited validation www.eurekalert.org/news-release...

Glad to see patient selection used the ME/CFS/CCC. I have heard of people trying this had increased viral load. As if the pressure pushed virus out of the tissues causing reactivation. Something to watch for if trying this.

– Not buying it. I crossed the road yesterday and I was fine. #longcovid #postcovid #ableism #satire

– Help! – But have you tried just ignoring the water? #longcovid #postcovid #ableism #satire

Patient selection is key to quality science. That is why I agree with the experts who wrote the myalgic encephalomyelitis International Consensus Criteria & Primer. See introduction o of Primer for details. drive.google.com/file/d/1A0Bv...

Would love to see this research duplicated using myalgic encephalomyelitis patients. The effects of sunlight on immune function could have significance for those of us too severely ill to be in the sun.

This does not bode well for #MyalgicEncephalomyelitis research. We are already dealing with systemic bias based on decades of misinformation. ME has been designated a neurological disease for decades but neurologist are the least educated about this disease & still promote harmful exercise.

Importance of stratification by gender in Myalgic Encephalomyelitis. "... PEM has begun to be understood not only as a self-reported symptom, but also as a quantifiable failure of molecular recovery, which has the potential to be mediated by different mechanisms for men and women"

"This would be the end of American science as we know it," said @colesci.bsky.social, a policy analyst from the group @standupforscience.net who has been organizing to protest the change. "We're gonna make sure that it doesn't fade quietly into the night." www.npr.org/2026/06/03/n...

#MyalgicEncephalomyelitis research may be affected. I don't know where we fall into this mess, but some of the new policies do not look helpful!

Written summaries of PolyBio’s Spring symposium presentations are available now! Check out shortened, simplified summaries, or full technical explanations of your favourite research projects. 2026-spring-symposium-polybio.netlify.app #Longcovidresearch #mecfsresearch #chroniclymedisease

#Breaking The FDA has approved #ensitrelvir (Xocova) for post-exposure prophylaxis of #COVID19 in adults and adolescents aged 12 years and older, making it the first and only oral antiviral authorized to help prevent symptomatic infection after exposure. @shionogiincus.bsky.social #IDsky

#MyalgicEncephalomyelitis research 10 ME-ICC patients show abnormality in calcium ion function link.springer.com/article/10.1... "Hence, demonstrating ion channel dysfunction and the subsequent cytosolic Ca2+ mobilisation disturbances in NK cells from ME/CFS patients as we previously reported."

NASA lean test explained. (Music background makes this difficult to watch for those with sound sensitivities) Used to look for irregular heat rate & blood pressure that could indicate various conditions including postural orthostatic tachycardia syndrome (POTS) youtu.be/96GCnYWX8D4?...

Latest article from View from the Trenches of #MyalgicEncephalomyelitis includes: - Call to action - Studying biology in motion - Very Severe added to SNOMED’s dx coding - US limits protection for assistance animals for disabled tenants - Forward ME news open.substack.com/pub/colleens...

It’s #MEawarenesshour. I’m tweeting in the hope that if more people are aware of M.E. and the way it devastates lives, more effort and funding will be allocated to investigating and searching for answers. We need an agreed, objective diagnostic test for detailed clinical trials.

Every US citizen needs to know what is being set up to collect our personal data! I agree this is a 5 alarm fire. Spread the word that the executive branch of our government (The President) looks to be using DOGE personnel to replace current gov systems. open.substack.com/pub/thedreyd...

We have known for a while that #LongCOVID pathobiology for many involves reactivation of various herpesviruses. As we continue to validate this it is great to see this work coming out in collaboration with @VirusesImmunity’s incredible team. Here we www.medrxiv.org/content/10.6... 1/

Interesting paper. Pulls together a lot of information. Makes the excellent (which should have been obvious) point that research needs to take into account that ##MyalgicEncephalomyelitis is a disease that is exacerbated by stress to the system. Testing while resting is not effective.

Feeling overwhelmed with all of this. LISTEN. Another Louisiana resident (Marshawn is the only name we have) testifies against the state’s racial gerrymander, speaking truth to power up and down the hearing room and predicts how this story will end. Speak your truth, fight and believe.

Intriguing research. EBV is only one of the viruses seen to reactive in people with #MyalgicEncephalomyelitis. Would be great if this led to treatment!

Latest View from the Trenches of #MyalgicEncephalomyelitis recognizes the importance of advocates for the existence of May 12 awareness day. open.substack.com/pub/colleens...

Dan Wyke says "Sorry to report that musician and poet James Strazza passed away this week. He had been suffering from severe ME since 2019. Condolences to family and friends." Read about his work at www.jamesstrazza.com

Amazing research by an Aussie scientist now at Stanford. She scans people using positron emission tomography. People with #mecfs light up like a 🎄. In the muscles (which, maybe you could argue they're more sedentary) but also in the bones. 1/3

Prof. Carmen Scheibenbogen eröffnete die International ME/CFS Conference 2026 mit einem Appell an die anwesenden Forschenden von #MECFS. #MECFSConf2026

The research discussed used patients who fit the ME/CFS-CCC. While the ME-ICC would be better, this looks to be a useful study. Glad to see it highlighted in a news story.

For those of us with #MyalgicEncephalomyelitis this is important. Due to ME leading to opportunities infections, we are often given antibiotics. That in turn leads to loss of gut microbiome. We need tools to maintain healthy gut.

Nevra's health continues to decline, with severe cardiac symptoms that warrant quick attention. Please consider donating and/or sharing to help Nevra access the medical care she needs. paypal.me/SaveLizNevra gofundme.com/f/save-nevra #SaveLizNevra #MECFS #pwME #ChronicIllness

Helpful to understand US Social security disability for #MyalgicEncephalomyelitis or #LongCovid open.substack.com/pub/michelle...

Hodgson. Thank you for your continued support. Please share this update with people you know, especially anyone without direct experience of the illness, and help us raise awareness of this injustice. We could not do any of this without you." @sharonhodgsonmp.bsky.social 7🪡7 justice4me.uk

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

View from the Trenches of ME news: - MEGC #56 - Hillary Johnson’s articles - Loss of advocate David Black - Dr. Groysman - David Tuller's Last Fund Raiser - Nasal spray treats cognition issues - HFME Website Update #MyalgicEncephalomyelitis colleensteckelmeiccinfo.substack.com/p/news-2026-...