Colleen Steckel
@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
Contracted ME in 1989
Substack: https://colleensteckelmeiccinfo.substack.com/
Volunteer at www.MEadvocacy.org
Aspiring writer of paranormal fiction
Pinned
Myalgic Encephalomyelitis IC Primer
A powerful tool to educate about ME
open.substack.com
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...
See latest article from View from the Trenches of Myalgic Encephalomyelitis about the International Consensus Primer.
open.substack.com/pub/colleens...
Since #MyalgicEncephalomyelitis leads to reactivated viruses, I am interested in any new antivirals. Interesting research:
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
Since #MyalgicEncephalomyelitis leads to reactivated viruses, I am interested in any new antivirals. Interesting research:
Reposted by Colleen Steckel
#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
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
November 10, 2025 at 7:45 PM
#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
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
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.
I think many of us in the ME-ICC group deal with MCAS and orthostatic intolerance.
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
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
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.
I think many of us in the ME-ICC group deal with MCAS and orthostatic intolerance.
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
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
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
New drug may offer better treatment options.
www.contagionlive.com/view/fda-app...
#Medsky
Low dose naltrexone was also discussed. I wrote about that here: open.substack.com/pub/colleens...
November 8, 2025 at 11:49 AM
Low dose naltrexone was also discussed. I wrote about that here: open.substack.com/pub/colleens...
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.
Until we have that, we can better stratify using the International Consensus Criteria (ME-ICC) to screen patients.
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)
- 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
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.
Until we have that, we can better stratify using the International Consensus Criteria (ME-ICC) to screen patients.
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...
#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
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...
#MyalgicEncephalomyelitis
October Slide
Corina Duyn
Life Hidden
Maureen Hanson
MEGC #54
Conferences
open.substack.com/pub/colleens...
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.
The systemic bias has caused decades of harm that could have been prevented.
“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
“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
November 3, 2025 at 3:42 PM
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.
The systemic bias has caused decades of harm that could have been prevented.
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.
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
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.
Reposted by Colleen Steckel
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
#MEcfs #LongCovid #PostExertionalMalaise #PEM
October 29, 2025 at 1:54 PM
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
#MEcfs #LongCovid #PostExertionalMalaise #PEM
Reposted by Colleen Steckel
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
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."
Reposted by Colleen Steckel
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...
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
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...
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...
This is deeply concerning for those with marginalized diseases like #MyalgicEncephalomyelitis
Trump wants to kick 20% of people off of SSDI (Social Security Disability Insurance) this will kill people. #Disability #DisabilityNews #politics
www.cbpp.org/blog/trump-a...
www.cbpp.org/blog/trump-a...
Trump Administration Plans Deep Cuts to Social Security Disability Insurance, Particularly for Older Workers
Despite repeatedly promising not to cut Social Security, the Trump Administration is reportedly preparing a proposed rule that could reduce the share of applicants who qualify for Social Security...
www.cbpp.org
October 26, 2025 at 2:33 PM
This is deeply concerning for those with marginalized diseases like #MyalgicEncephalomyelitis
Reposted by Colleen Steckel
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
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...
Reposted by Colleen Steckel
Trump’s new Epstein Ballroom will soon be the venue for many sweet 16 parties and quinceñeras.
October 22, 2025 at 8:00 PM
Trump’s new Epstein Ballroom will soon be the venue for many sweet 16 parties and quinceñeras.
Reposted by Colleen Steckel
Tell me again about the Confederate statues we can't tear down.
October 23, 2025 at 12:42 PM
Tell me again about the Confederate statues we can't tear down.
Reposted by Colleen Steckel
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
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
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
go.illinois.edu/IPM-BlueSky
Reposted by Colleen Steckel
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
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
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
Brian T. Ruan, Sarojini Bulbule, Brooke Gile, Amy Reyes, Bela Chheda, Lucinda Bateman, Jennifer Bell, Brayden Yellman, @grachstephanie.bsky.social
Latest View from the Trenches of Myalgic Encephalomyelitis covers recent news about a possible blood test.
open.substack.com/pub/colleens...
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
Latest View from the Trenches of Myalgic Encephalomyelitis covers recent news about a possible blood test.
open.substack.com/pub/colleens...
open.substack.com/pub/colleens...
Apparently the letter exposing the faults of the NIH study about "effort preference" hit a nerve. Here is the response.
Reply to: Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome | Nature Communications share.google/18JL0YaJqgK7...
Reply to: Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome | Nature Communications share.google/18JL0YaJqgK7...
Reply to: Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome - Nature Communications
Nature Communications - Reply to: Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome
share.google
October 20, 2025 at 2:46 PM
Apparently the letter exposing the faults of the NIH study about "effort preference" hit a nerve. Here is the response.
Reply to: Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome | Nature Communications share.google/18JL0YaJqgK7...
Reply to: Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome | Nature Communications share.google/18JL0YaJqgK7...
Reposted by Colleen Steckel
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
October 17, 2025 at 3:10 PM
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Reposted by Colleen Steckel
Fifty years ago today.
The Sacramento Bee, California. 17th October 1975. "Icelandic disease" is one of the many names to have been given to 'M.E.'. #myalgicencephalomyelitis #myalgice #mecfs
The Sacramento Bee, California. 17th October 1975. "Icelandic disease" is one of the many names to have been given to 'M.E.'. #myalgicencephalomyelitis #myalgice #mecfs
October 17, 2025 at 9:49 AM
Fifty years ago today.
The Sacramento Bee, California. 17th October 1975. "Icelandic disease" is one of the many names to have been given to 'M.E.'. #myalgicencephalomyelitis #myalgice #mecfs
The Sacramento Bee, California. 17th October 1975. "Icelandic disease" is one of the many names to have been given to 'M.E.'. #myalgicencephalomyelitis #myalgice #mecfs
Reposted by Colleen Steckel
“Most of the people I’ve seen with #MECFS are so much sicker than my cancer patients.”
Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference.
Thanks to @mecfsskeptic.bsky.social for finding the clip.
Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference.
Thanks to @mecfsskeptic.bsky.social for finding the clip.
October 16, 2025 at 6:36 PM
“Most of the people I’ve seen with #MECFS are so much sicker than my cancer patients.”
Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference.
Thanks to @mecfsskeptic.bsky.social for finding the clip.
Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference.
Thanks to @mecfsskeptic.bsky.social for finding the clip.