Colleen Steckel
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colleensteckel.bsky.social
Colleen Steckel
@colleensteckel.bsky.social
2.5K followers 1.6K following 1.4K posts
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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colleensteckel.bsky.social
Colleen Steckel @colleensteckel.bsky.social · Feb 25
What do we know about #MyalgicEncephalomyelitis? We know a lot more than many realize.

See latest article from View from the Trenches of Myalgic Encephalomyelitis about the International Consensus Primer.

open.substack.com/pub/colleens...
Myalgic Encephalomyelitis IC Primer
A powerful tool to educate about ME
open.substack.com
Reposted by Colleen Steckel
bhanlon15.bsky.social
The Independent: 'Strange changes found in blood of long Covid patients'

'Tiny clots appeared larger-than-normal in long Covid patients, study finds'

www.the-independent.com/news/science...
Long Covid has done something strange to people’s blood
Tiny clots appeared larger-than-normal in long Covid patients, study finds
www.the-independent.com
November 18, 2025 at 3:14 PM
colleensteckel.bsky.social
News from View from the Trenches of Myalgic Encephalomyelitis

Medicare: Telehealth is back (not for long)

Medicaid to add 80 hours per month work requirements

Hemp products at risk

Tips to save money on prescriptions.

open.substack.com/pub/colleens...
News: 2025 Nov 15
US Gov Health Care: Telehealth back (not for long), hemp products at risk, Medicaid to add 80 hour work requirement, plus resources to save $ on prescriptions
open.substack.com
November 16, 2025 at 3:27 PM
colleensteckel.bsky.social
Study also underscores the importance of stratifying by gender.
valebodi.bsky.social valebodi.bsky.social @valebodi.bsky.social · 5d
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in #ME/CFS following exertion
Arnaud Germain ∙ Katherine A. Glass ∙ Melissa A. Eckert ∙ Ludovic Giloteaux ∙ Maureen R. Hanson @cornellmecfs.bsky.social

Department of Molecular Biology and Genetics, Cornell University
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion
The overarching symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is post-exertional malaise (PEM), an exacerbation of symptoms following physical or mental exertion. To investiga...
www.mcponline.org
November 14, 2025 at 5:19 PM
colleensteckel.bsky.social
Important condition to rule out when considering a diagnosis of #MyalgicEncephalomyelitis
contagionlive.bsky.social Contagion® @contagionlive.bsky.social · 5d
A healthy New Jersey man succumbed to the allergy after eating red meat. A blood sample collected post-mortem found that he had been sensitized to the sugar, alpha-gal, found in mammals. The blood sample indicated the man had had an extreme reaction.
First Confirmed Death From Meat Allergy Spread by Lone Star Ticks | Contagion Live
A healthy New Jersey man succumbed to the allergy after eating red meat. A blood sample collected post-mortem found that he had been sensitized to the sugar, alpha-gal, found in mammals. The blood sam...
www.contagionlive.com
November 14, 2025 at 5:17 PM
Reposted by Colleen Steckel
startribune.com
The spending bill signed by the president will essentially prohibit hemp-based THC products nationwide in a year.
Minnesota’s hemp-derived THC companies prepare to fight ban on Capitol Hill
A spending bill passed by the U.S. House and signed by the president Wednesday will essentially prohibit hemp-based THC products nationwide in a year.
bit.ly
November 13, 2025 at 2:24 PM
Reposted by Colleen Steckel
wyattprivilege.bsky.social
Wow so she was AG of Florida that whole time Epstein is going buck wild down there huh
November 12, 2025 at 9:06 PM
colleensteckel.bsky.social
Since #MyalgicEncephalomyelitis leads to reactivated viruses, I am interested in any new antivirals. Interesting research:
contagionlive.bsky.social Contagion® @contagionlive.bsky.social · 8d
Immunocore’s first-in-human study of its bispecific, IMC-I109V, demonstrated early antiviral activity and a favorable safety profile, supporting continued development of the TCR bispecific candidate as a potential functional cure for chronic hepatitis B.
Novel Bispecific Shows Early Activity in Phase 1 Chronic Hepatitis B Study | Contagion Live
Immunocore’s first-in-human study of its bispecific, IMC-I109V, demonstrated early antiviral activity and a favorable safety profile, supporting continued development of the TCR bispecific candidate a...
www.contagionlive.com
November 11, 2025 at 6:53 PM
Reposted by Colleen Steckel
chromatowski.bsky.social
#NEISvoid PSA

TIL patients and caregivers can get free access to Elsevier papers!

Email your request to patientaccess@elsevier.com and include confirmation you are a patient. Turnaround is 48 hours.

#LongCovid #MECFS
Patient access Patients and non-professional caregivers can make requests for individual papers related to medicine and healthcare at no cost. These papers can be requested by e-mailing patientaccess@elsevier.com 7. We aim to provide the requested articles within 48 hours. Please include the article title and author(s), date published, and/or the URL if available. This will ensure that our team can locate the requested content as quickly as possible. Please include the text "I confirm | am a patient or non-professional caregiver" to confirm your eligibility to us this service; please do not disclose
November 10, 2025 at 7:45 PM
colleensteckel.bsky.social
Would like to see this study repeated using patients who have ME as defined by the International Consensus Criteria (ICC).

I think many of us in the ME-ICC group deal with MCAS and orthostatic intolerance.
valebodi.bsky.social valebodi.bsky.social @valebodi.bsky.social · 9d
The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
by Johanna Rohrhofer Lilian Ebner Johannes Schweighardt @neurostingl.bsky.social and Eva Untersmayr
#ME/CFS #MCAS #POTS #OI #PEM
www.mdpi.com
November 10, 2025 at 4:58 PM
colleensteckel.bsky.social
Urinary tract infections (UTIs) are unpleasant & can lead to serious health complications. With the immune dysfunction seen in #MyalgicEncephalomyelitis, many of us experience multiple / hard to treat UTIs.

New drug may offer better treatment options.

www.contagionlive.com/view/fda-app...
#Medsky
FDA Approves IV Antibiotic, Contepo, for Complicated Urinary Tract Infections | Contagion Live
The federal agency gave the nod to Meitheal Pharmaceuticals for its antibiotic, Contepo, an intravenous fosfomycin offering a new mechanism of action and a new option for adults with complicated urina...
www.contagionlive.com
November 8, 2025 at 5:05 PM
colleensteckel.bsky.social
Low dose naltrexone was also discussed. I wrote about that here: open.substack.com/pub/colleens...
November 8, 2025 at 11:49 AM
colleensteckel.bsky.social
I couldn't agree more! Biomarker stratification is a goal we need for all #MyalgicEncephalomyelitis research!

Until we have that, we can better stratify using the International Consensus Criteria (ME-ICC) to screen patients.
spichaksimon.bsky.social Simon Spichak @spichaksimon.bsky.social · 12d
For future trials we need:
- Biomarker based stratification
- Need to take sex into account
- Need objective real-world outcome measures (i.e. heart rate variation, actigraphy for step counting, brain imaging, cognitive testing)
November 7, 2025 at 4:12 PM
colleensteckel.bsky.social
New View from the Trenches of Myalgic Encephalomyelitis Substack covers variety of topics.
#MyalgicEncephalomyelitis

October Slide
Corina Duyn
Life Hidden
Maureen Hanson
MEGC #54
Conferences

open.substack.com/pub/colleens...
News: 2025 November 2
October slide, Corina Duyn, Life Hidden, Maureen Hanson, MEGC #54, Conferences
open.substack.com
November 3, 2025 at 4:30 PM
colleensteckel.bsky.social
1990! We have had many ignored findings that explain what is happening to people with #MyalgicEncephalomyelitis.

The systemic bias has caused decades of harm that could have been prevented.
valebodi.bsky.social valebodi.bsky.social @valebodi.bsky.social · 16d
“Scientists identify virus causing fatigue in ME“
“We’ve found defective immunity, evidence of persistent viral infection, ABNORMAL MITOCHONDRIA and the hypothalamus not functioning!” P. Behan et al Glasgow 1990 (!!!) #MyalgicE #MECFS #PwME #Mitochondria #PostViralSequelae
Old newspaper article from the UK dated 1990 Scientists identify virus causing fatigue in ME SCIENTISTS say they have con- Fatigue Syndrome in Los Angeles firmed that ME, or "yuppie flu", By Wilma Patterson has physical causes, and know yesterday. He stressed that the Corsackie virus is not the only vi- why it causes extreme fatigue. A team from the department of neurology at the Southern General Hospital, Glasgow, using the DNA genetic finger printing tech-nique, identified fragments of the Coxsackie virus in the muscle tis-* sue of 30 per cent of sufferers. Previous studies have concentrated on identifying a viral agent in the blood. When the team looked at individual muscle cells. they found that the energy-producing apparatus of the cell - the mitochondria - were abnormal. This may explain the severe fatigue experienced by those with myalgic en-cephalomyelitis. Abnormal mitochondria in other parts of the body, including a part of the brain known as the hypothalamus, which controls sleep, appetite, sexual drive and emotion, would result in other symptoms characteristic of the illness, according to Peter Behan, professor of neurology at Glasgow University, who led the team. Tests on SO patients who took part in the initial study and analysis of more than 1,000 other case histories, suggested abnormal hypothalmic function and a defective immune system. Professor Behan presented his team's findings at the International Meeting on Chronic Viral rus likely to be involved. Future research will look for the herpes zoster virus, which causes chicken pox and shingles in muscle tissue. "We know that there is a persistent virus and with this technique we can take viruses out, and look at them," he said. *We've found defective immunity, evidence of persistent viral infec-tion, abnormal mitochondria and the hypothalamus not function-ing." Medical opinion about ME is • divided and many doctors dismiss the symptoms as psychologi-cal; others say they are part of a recognised co…
November 3, 2025 at 3:42 PM
colleensteckel.bsky.social
Interesting about the thalamic improvement. I have heard reports of patients having an uptick in reactivated viruses from doing HBOT. Wonder if the patients had viral treatments as well.
medrxivpreprint.bsky.social medRxivpreprint @medrxivpreprint.bsky.social · 18d
Hyperbaric oxygen therapy improves clinical symptoms and functional capacity and restores thalamic connectivity in ME/CFS https://www.medrxiv.org/content/10.1101/2025.10.29.25339096v1
November 1, 2025 at 3:17 PM
Reposted by Colleen Steckel
tomkindlon.bsky.social
A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff

#MEcfs #LongCovid #PostExertionalMalaise #PEM
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated. Assistance: Provide quiet, minimal support (e.g., washcloths, seated wash). Avoid standing or prolonged exertion. Environment: Keep lighting low and surroundings quiet. Ensure seating for safety if required. Aftercare: Allow full recovery time after shower; avoid further activity immediately afterwards. Shift Handover Note - Include in SBAR S-Situation: PEM episode Yes No | Start: | Severity: mild/mod/severe B- Background: ME/CFS with PEM; significant light/noise sensitivity; cognitive overload risk. …
October 29, 2025 at 1:54 PM
Reposted by Colleen Steckel
atrupar.com
Kaine: "We can't do a deal with Trump then have him tear it up tmrw & start mass firings or canceling programs he doesn't like or ones that help blue states. We have to be sure that a deal is a deal ... thus far he's not been willing to even discuss a deal, much less guarantee he'll live by one."
October 26, 2025 at 1:48 PM
Reposted by Colleen Steckel
broadwaybabyto.bsky.social
It’s POTS Awareness Day!

People with POTS are often misdiagnosed with “anxiety”.

It can take 7-10 years to get a proper diagnosis.

I spent years fainting and sustaining severe injuries before a doctor finally figured it out.

My guide to diagnosis: www.disabledginger.com/p/its-just-a...
"It's Just Anxiety"... Or Perhaps They've Misdiagnosed You
Patients with POTS are frequently misdiagnosed as anxious. An exploration of the diagnostic process, the gaslighting and barriers patients face when dealing with this debilitating condition.
www.disabledginger.com
October 26, 2025 at 5:21 AM
colleensteckel.bsky.social
This is deeply concerning for those with marginalized diseases like #MyalgicEncephalomyelitis
October 26, 2025 at 2:33 PM
Reposted by Colleen Steckel
mossilpubmedia.bsky.social
Illinois Secretary of State Alexi Giannoulias issued a stern warning to ICE agents after a video on social media went viral. “Swapping out license plates or tampering with them to avoid or conceal detection is illegal, unsafe and will not be tolerated...." youtube.com/shorts/dmQoy...
Giannoulias to ICE Agents: Don’t Mess with Illinois License Plates
YouTube video by Illinois Secretary of State
youtube.com
October 24, 2025 at 9:15 PM
Reposted by Colleen Steckel
lincolnproject.us
Trump’s new Epstein Ballroom will soon be the venue for many sweet 16 parties and quinceñeras.
October 22, 2025 at 8:00 PM
Reposted by Colleen Steckel
jonzoidberg.xyz
Tell me again about the Confederate statues we can't tear down.
The demolished East Wing of the White House
October 23, 2025 at 12:42 PM
Reposted by Colleen Steckel
mossilpubmedia.bsky.social
As part of its strategic planning process, Illinois Public Media wants to know what you think. This survey takes less than 10 minutes to complete, and your voice will make a difference.
go.illinois.edu/IPM-BlueSky
Illinois Public Media Survey | Fall 2025
Thank you for participating in our survey! Illinois Public Media is committed to serving diverse audiences with meaningful, engaging, and inclusive content. This survey helps us better understand your...
go.illinois.edu
October 22, 2025 at 11:01 PM
Reposted by Colleen Steckel
valebodi.bsky.social
21 October 2025
Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study

Brian T. Ruan, Sarojini Bulbule, Brooke Gile, Amy Reyes, Bela Chheda, Lucinda Bateman, Jennifer Bell, Brayden Yellman, @grachstephanie.bsky.social
Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study - Journal of Translational Medicine
Background mTOR activation is associated with chronic inflammation in ME/CFS. Previous studies have shown that sustained mTOR activation may cause chronic muscle fatigue by inhibiting ATG13-mediated a...
translational-medicine.biomedcentral.com
October 21, 2025 at 3:27 PM
colleensteckel.bsky.social
Latest View from the Trenches of Myalgic Encephalomyelitis covers recent news about a possible blood test.

open.substack.com/pub/colleens...
Headlines about Blood Biomarker for “ME/CFS” are premature
Potential Blood Biomarker is more accurate
open.substack.com
October 21, 2025 at 1:10 PM