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colleensteckel.bsky.social
Advocate for #MyalgicEncephalomyelitis using ME-ICC. Contracted ME in 1989 Substack: https://colleensteckelmeiccinfo.substack.com/ Volunteer at www.MEadvocacy.org Aspiring writer of paranormal fiction
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Well.... when it comes to #MyalgicEncephalomyelitis, I wish this message had been heeded in 1994. The rest of the world really should have listened to experts like Dr. Ramsay and NOT the US CDC! 1994 is the year the Fukuda criteria for "CFS" buried the distinct disease ME.

submitted 1 day ago • 0 comments

Grateful to see the references included both the Canadian Consensus Criteria (CCC) & the International Consensus Criteria (ICC) Any medical professionals treating someone with #MyalgicEncephalomyelitis needs a working knowledge of both those criteria! Info here: open.substack.com/pub/colleens...

submitted 4 days ago • 0 comments

This is so important for anyone given an ME/CFS label. We need doctors better trained to differentiate between patient groups. The International Consensus Primer is a good first step while we wait for doctors to have access to these tests. open.substack.com/pub/colleens...

submitted 5 days ago • 0 comments

#MEawarenessmonth Another must-read from Hillary Johnson, superb writer & fearless, dedicated investigator. Epidemiology, Blood Morphology + more. Part Two coming soon. "Five early and important investigations of #MyalgicEncephalomyelitis that went unheeded: Part One" hillaryjohnson.substack.com

submitted 7 days ago • 0 comments

"Are you Homebound from #LongCOVID? Do you live within 30 min from Boston?" rally.massgeneralbrigham.org/study/lc_hom... Great to see opportunities like this.Biological signals may be stronger in the more severe Image from @massmecfs.bsky.social newsletter massme.monkeypod.io/mailcoach/we... #PASC

submitted 7 days ago • 0 comments

Regeneron to buy bankrupt genetic testing firm 23andMe for $256 million reut.rs/4mFheBx

submitted 6 days ago • 6 comments

Tonight, Bruce Springsteen and The E Street Band opened their Land of Hope & Dreams Tour. Bruce launched this run of shows with three statements about the situation in the United States, with comments preceding his songs Land of Hope and Dreams, House of a Thousand Guitars and My City of Ruins.

submitted 11 days ago • 423 comments

New article from View from the Trenches of #MyalgicEncephalomyelitis A Life Hidden - courage of #pwME Researchers meet at various conferences Iron deficiencies too often overlooked open.substack.com/pub/colleens...

submitted 10 days ago • 0 comments

We're studying how Lumbrokinase, a supplement, may reduce symptoms of Long COVID, Chronic #Lyme Disease, and #MECFS. Our clinical trial is recruiting! Email [email protected].

submitted 10 days ago • 0 comments

Low-dose Rapamycin trial in PCS RAP is mTOR inhibitor at high dose, immunomodulatory effect at low doses. Effects in viral activation, reverses immunosenescence, stabilices inflamatory cytokines. Dose: single weekly dose of 1mg (2w)+ 2mg (2w)+ 4mg for 2 months David Putrino #MECFSConference2025

submitted 12 days ago • 3 comments

@pwdp.bsky.social @physiciandemocracy.medsky.social @votevets.org

submitted 15 days ago • 0 comments

I can see this having connection to #MyalgicEncephalomyelitis To better understand the neurological aspect of ME, see the neurological research in these lists. open.substack.com/pub/colleens... #Medsky

submitted 14 days ago • 0 comments

Viral persistence needs to be recognized! Every doctor needs educated about viral reservoirs and reactivated/persistent viruses. This is key to treating people with #LongCovid as well as #MyalgicEncephalomyelitis #Medsky

submitted 14 days ago • 0 comments

As someone living with #MCAS & #MyalgicEncephalomyelitis, I can confirm that these are indeed toxic to my health!

submitted 14 days ago • 0 comments

LAST CHANCE TO CALL TO SAVE #Medicaid! ☎️ Sign up with @aoc.bsky.social #ACA #medsky #m4a #healthcare act.ocasiocortez.com/call/save-me...

submitted 14 days ago • 0 comments

This looks interesting. I don't have access (yet) to the full paper, but I would think this would be of interest to all post viral disease researchers. #MyalgicEncephalomyelitis

submitted 14 days ago • 0 comments

Does anyone know if this is being used in #MyalgicEncephalomyelitis or #LongCovid research?

submitted 14 days ago • 0 comments

It is important to rule out iron deficiencies for anyone dealing with "fatigue" symptoms. "Iron deficiency has been associated with restless leg syndrome, decreased physical capacity, impaired neurocognitive function, heart failure... " #MyalgicEncephalomyelitis

submitted 15 days ago • 0 comments

As we approach #MEAwarenessWeek, a piece recognising the courage that exists in our community. It acknowledges those who have lost their lives, those who have not improved, and those who’ve experienced progress - along with the loved ones who witness it all. alifehidden.com/2025/05/07/c... (1/7)

submitted 18 days ago • 2 comments

#MyalgicEncephalomyelitis and #longcovid research underscores the importance of stratifying patients and offers more proof that the muscle dysfunction in patients is not deconditioning. NOTE: ME/CFS patients fulfilled the Canadian Consensus Criteria (CCC) 1/ www.medrxiv.org/content/10.1...

submitted 19 days ago • 1 comment