Colleen Steckel
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colleensteckel.bsky.social
Colleen Steckel
@colleensteckel.bsky.social
2.6K followers 1.7K following 1.6K 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
abrokenbattery.bsky.social
TW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again.

Also includes a diary style update of her experience in hospital.

www.gofundme.com/f/severemerg...
February 17, 2026 at 5:37 AM
colleensteckel.bsky.social
#MyalgicEncephalomyelitis, #LongCovid & #POTS are #Neuroimmune diseases.

Recent paper underscores the importance of educating specialists for all these patient groups.

#Medsky #neurosky

www.dovepress.com/postural-ort...
POTS, ME/CFS and Long COVID as neuroimmune disorders | ITT
Postural orthostatic tachycardia syndrome, myalgic encephalomyelitis/chronic fatigue syndrome and Long COVID are heterogeneous disorders with overlapping terms.
www.dovepress.com
February 15, 2026 at 10:42 PM
colleensteckel.bsky.social
New article from View from the Trenches of #MyalgicEncephalomyelitis covers useful ICD codes for those with ME. May also be useful for those with #LongCovid

open.substack.com/pub/colleens...
International Classification of Diseases Codes
ICD info for those with Myalgic Encephalomyelitis
open.substack.com
February 11, 2026 at 10:05 PM
Reposted by Colleen Steckel
onaalbizu.bsky.social
It's been 10 months with ixekizumab for other autoimmune disease.
6m w/out osteo pain. Arthralgias disappeared. Cognitive function for 3h is SO good (coming from hell before)
Why aren't broad range monoclonals used for #MyalgicE as used for MS, RA?
Not a cure but a treatment!
Why are we left to rot?
February 8, 2026 at 12:02 PM
colleensteckel.bsky.social
Useful guide.
batemanhornecenter.bsky.social Bateman Horne Center @batemanhornecenter.bsky.social · 14d
We’re releasing a new State-by-State Resource Directory to help people living with ME/CFS and other disabling chronic illnesses find local and national support.

Free, practical, and built for real life.
🔗https://bit.ly/3ZBBIAC
February 4, 2026 at 8:34 PM
colleensteckel.bsky.social
Interesting research used patients who fit the ME/CFS Canadian Consensus Criteria showing difference with those whose illness caused by Covid.

#MyalgicEncephalomyelitis
#LongCovid
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 14d
New from international research group

Immunoglobulin G Complexes from Post-infectious ME/CFS, including post-COVID ME/CFS Disrupt Cellular Energetics and Alter Inflammatory Marker Secretion

www.sciencedirect.com/science/arti...

#MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis

1/
Abstract Background Autoimmunity is a key clinical feature in both post-infectious Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Post-Acute Sequelae of COVID (PASC). Passive transfer of immunoglobulins from patients' sera into mice induces some clinical features of PASC. However, the physiological effects of immunoglobulins on cellular alterations remain elusive. In this study, we tested the potential effects of immunoglobulins from ME/CFS patients on endothelial cell dysfunction. Methods We have isolated immunoglobulins from 106 individuals, including ME/CFS (n=39), PCS-CFS (n=15), MS (n=20) patients, and healthy controls (n=41). Protein composition of the isolated immune complexes was studied using mass spectrometry. The effect of isolated immune complexes on mitochondria was evaluated using confocal microscopy and a Seahorse XFe96 Extracellular Flux Analyzer, and the impact on inflammatory cytokine secretion was studied using a multiplex bead-based assay. Results Here, we demonstrate that IgG isolated from post-infectious ME/CFS patients selectively induces mitochondrial fragmentation in human endothelial cells and alters cellular energetics. This effect is lost upon cleavage of IgG into its Fab and Fc fragments. The digested Fab fragment from ME/CFS alone was able to alter the cellular energetics, resembling the effect of intact IgG. IgG from post-infectious ME/CFS, including post-COVID ME/CFS patients, induced distinct but separate cytokine secretion profiles in healthy PBMCs. Proteomics analysis of IgG-bound immune complexes revealed significant changes in immune complexes from ME/CFS patients, affecting extracellular matrix organization, whereas those from post-COVID ME/CFS patients pointed to alterations in hemostasis and blood clot regulation. Conclusions We demonstrate that IgGs from ME/CFS patients carry a chronic protective stress response that promotes mitochondrial adaptation via fragmentation, without altering mitochondrial ATP gen…
February 4, 2026 at 6:01 PM
colleensteckel.bsky.social
#Longcovid and metformin
February 4, 2026 at 4:28 PM
colleensteckel.bsky.social
Excellent article from Hillary Johnson about the historical burying of ME.

Everyone should know about the research funds being used to buy furniture...

Understanding ME history helps explain why people with #MyalgicEncephalomyelitis can't get adequate care today.

open.substack.com/pub/hillaryj...
The Science Bros and Violence Toward Women, Part Two
Second and last in a series
open.substack.com
February 2, 2026 at 3:52 PM
colleensteckel.bsky.social
Good article about the brain scans showing a difference between #MyalgicEncephalomyelitis and #LongCovid brain dysfunction.
February 2, 2026 at 3:36 PM
colleensteckel.bsky.social
New article from View from the Trenches of #MyalgicEncephalomyelitis covers ICD coding for Fluoroquinolone antibiotic poisoning.
open.substack.com/pub/colleens...
Fluoroquinolone antibiotics poisoning
New ICD code - T36.AX5
open.substack.com
January 29, 2026 at 9:34 PM
colleensteckel.bsky.social
Interesting discussion
pbsnews.org PBS News @pbsnews.org · 20d
Ultra-processed foods make up more than half the average American diet and they're linked to rising rates of obesity and heart disease. HHS Secretary Robert F. Kennedy Jr. says the Trump Administration has a solution. But will this plan really "Make America Healthy Again"? https://to.pbs.org/4b4vrEH
MAHA has a plan to clean up the American diet. Will it work? - Horizons
Ultra-processed foods make up more than half the average American diet and they're linked to rising rates of obesity and heart disease. Health Secretary Robert F. Kennedy Jr. says the Trump Administration has a solution. But will this plan really "Make ...
www.pbs.org
January 29, 2026 at 3:23 PM
colleensteckel.bsky.social
Speaking truth to power.

They are trampling on our rights!

ICE out now!
January 28, 2026 at 9:40 PM
colleensteckel.bsky.social
Good interview discussing the TRPM channelopathy & the research using a T7 MRI by NCNED.

I don't appreciate the picture or the "CFS" in the headline that ABC listen used though.
January 28, 2026 at 4:11 PM
colleensteckel.bsky.social
Good to see more research into the neurological issues seen in ##MyalgicEncephalomyelitis.

Interesting that there is a difference between LC and ME.

The more we know....
January 28, 2026 at 1:54 AM
colleensteckel.bsky.social
At home tests are very helpful for those of us with debilitating diseases like #MyalgicEncephalomyelitis.

I have no experience with the test but good to know it's available.
January 26, 2026 at 6:07 PM
colleensteckel.bsky.social
Because #MyalgicEncephalomyelitis causes dysfunctional immune system leading to opportunistic infections, this new antifungal could be helpful to us.
contagionlive.bsky.social Contagion® @contagionlive.bsky.social · 24d
Scynexis has secured FDA Qualified Infectious Disease Product (QIDP) and Fast Track designations for its next-generation antifungal SCY-247, underscoring the drug’s potential to address the escalating global threat of multidrug-resistant fungal infections such as Candida auris. #IDsky
Antifungal Earns FDA QIDP and Fast Track Designations Amid Rising Antifungal Resistance | Contagion Live
Scynexis has secured FDA Qualified Infectious Disease Product (QIDP) and Fast Track designations for its next-generation antifungal SCY-247, underscoring the drug’s potential to address the escalating...
www.contagionlive.com
January 25, 2026 at 4:12 PM
colleensteckel.bsky.social
I have had a good response to cromolyn sodium to treat mast cell activation. This has good info to justify taking higher dose.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 27d
New:
A Continuous Oral Regimen of High-Dose Cromolyn Sodium Is Effective for Some ME/CFS Patients With Mast Cell Activation Syndrome

www.cureus.com/articles/437...

A case series which is a weak form of evidence

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MCAS
Abstract Our clinical experience in the last four years using oral cromolyn in patients with mast cell activation syndrome (MCAS) suggests that a continuous oral regimen of high-dose cromolyn may enhance compliance with the medication. The five patients described in this retrospective case series were given instructions to take oral cromolyn using a continuous dosing regimen, placing the entire day’s dose in an opaque bottle that is then filled with water, and sipping the solution throughout the day. If a conventional maximum dose of eight vials daily (800 mg) was tolerated but ineffective after a week, the patients were instructed to increase to 1600-2400 mg daily until reaching an optimal effect. We report that a cromolyn dose of 1600-2400 mg daily, administered using the continuous oral dosing regimen during the day, was effective in controlling signs and symptoms of mast cell activation. All five patients benefitted from a dose of cromolyn that is higher than usual and customary recommendations, but within the safety guidelines of the original Food and Drug Administration (FDA) application. The continuous oral regimen has some theoretical advantages over four discrete doses per day, though further study is needed.
January 22, 2026 at 11:45 PM
Reposted by Colleen Steckel
contagionlive.bsky.social
Disease management now centers on more precise, context-driven diagnostics, restrained empiric antifungal use, echinocandin-focused therapy, and risk-based ophthalmologic evaluation aligned across global and US guidelines. #IDsky #Medsky
Invasive Candidiasis in 2026: Harmonizing Global and US Guidance in an Era of Diagnostic and Stewardship Complexity | Contagion Live
Invasive candidiasis management now centers on more precise, context-driven diagnostics, restrained empiric antifungal use, echinocandin-focused therapy, and risk-based ophthalmologic evaluation align...
www.contagionlive.com
January 22, 2026 at 3:05 PM
colleensteckel.bsky.social
This could be useful for those of us with dysfunctional immune systems.

I have had to fight various fungal infections since sudden onset of #MyalgicEncephalomyelitis in 1989...

A blood test to know what needs targeted would be helpful.
contagionlive.bsky.social Contagion® @contagionlive.bsky.social · 28d
Zepto Life Technology has introduced its FungiFlex Mold Panel, a plasma-based molecular test offered through a CLIA-certified reference laboratory that delivers rapid, noninvasive detection of 21 clinically important mold species linked to invasive fungal infections. #IDsky #Medsky
Company Launches Mold Panel to Accelerate Diagnosis of Invasive Fungal Infections | Contagion Live
Zepto Life Technology has introduced its FungiFlex Mold Panel, a plasma-based molecular test offered through a CLIA-certified reference laboratory that delivers rapid, noninvasive detection of 21 clin...
www.contagionlive.com
January 21, 2026 at 5:02 PM
colleensteckel.bsky.social
"When it fails, cells cannot function properly as calcium signaling is essential for healthy immune cell activity..."

Understanding the devastating reality of #MyalgicEncephalomyelitis

#Medsky

medicalxpress.com/news/2026-01...
People with ME/CFS have a consistent faulty cellular structure, new research confirms
A faulty ion channel function is a consistent biological feature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), providing long-awaited validation for hundreds of thousands of Australi...
medicalxpress.com
January 19, 2026 at 10:36 PM
colleensteckel.bsky.social
Latest View from the Trenches of #MyalgicEncephalomyelitis has important news about:

- MEGC #55
- Medicare Telehealth expiring (again)
- US Postal Service policy change
- US Social Security disability news
- Info on LDN study

open.substack.com/pub/colleens...
News: 2026 Jan 14
MEGC #55, Medicare Telehealth at risk (again), USPS policy change, SS Disability news, and LDN study
open.substack.com
January 15, 2026 at 2:48 PM
colleensteckel.bsky.social
Well... that explains a lot!
laurajedeed.bsky.social Laura Jedeed @laurajedeed.bsky.social · Jan 13
A few months ago, ICE hired me

I didn't sign and submit any paperwork. I almost certainly failed the drug test. I'm real outspoken about my opposition to the Trump administration, and I am extremely googlable

And yet, there it was, in plain English. "Welcome to ICE!"

My latest for Slate
You’ve Heard About Who ICE Is Recruiting. The Truth Is Far Worse. I’m the Proof.
What happens when you do minimal screening before hiring agents, arming them, and sending them into the streets? We're all finding out.
slate.com
January 13, 2026 at 3:58 PM
colleensteckel.bsky.social
#medsky

ME/CFS is an umbrella term so it's important to stratify patients.

But all Dr's need to understand the danger of exercise in these patient groups.

Pushing patients to exercise has led to dire outcomes.
January 9, 2026 at 6:01 PM
colleensteckel.bsky.social
Patient selection was ME/CFS-CCC

Canadian Consensus Criteria
wamesmecfs.bsky.social wamesmecfs.bsky.social @wamesmecfs.bsky.social · Jan 9
Dr Missailidis' team has used a multi-omics approach anal how different biol. processes interact & influence each other. They found a distinct pattern of lipid accumulation in ME/CFS with potential 4 metabolic biomarkers to help dx & monitor dx progression
tinyurl.com/mvbtkdwu
Study Reveals Lipid Accumulation in ME/CFS Cells
In recent years, the scientific community has turned its attention to the enigmatic condition known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This debilitating disorder, which
tinyurl.com
January 9, 2026 at 2:44 PM
Reposted by Colleen Steckel
westonmale.bsky.social
History time, folks!
@rfh1955.bsky.social
@meassociation.org.uk
Read Dr Melvin Ramsay's medical memories here:
www.amazon.co.uk/Myalgic-Ence...
#RoyalFreedisease #me/cfs #medicalmemories
He was the RFH infectious diseases consultant, who managed the hospital's medical response to the epidemic
January 9, 2026 at 1:51 PM