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Colleen Steckel

@colleensteckel.bsky.social
2.7K followers 1.8K following 2K posts

Advocate for #MyalgicEncephalomyelitis using ME-ICC. Contracted ME in 1989 Substack: colleensteckelmeiccinfo.substack.com Volunteer at www.MEadvocacy.org Aspiring writer of paranormal fiction

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Reposted by Colleen Steckel
Jennifer Todd @jentodd2026.bsky.social · 27/09/2026
Join our phone bank to let your fellow IL-15 residents know they have a choice this November! 💙 Register here: us06web.zoom.us/meeting/regi...
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
📻 Superb @georgemonbiot.bsky.social Interview on LBC with Natasha Devon. "A long & vicious history in this country of dismissing predominantly female diseases & calling them hysterical." 🔥 Thank you George & Natasha 🙏
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Colleen Steckel @colleensteckel.bsky.social · 26/09/2026
Research about replacing bone marrow to bring in healthy mitochondria. As #MyalgicEncephalomyelitis & some with #LongCovid deal with malfunctioning mitochondria this may be worth watching. med.stanford.edu/news/all-new...
med.stanford.edu
Bone marrow transplants offer surprising way to treat mitochondrial disease, Stanford Medicine study shows
Healthy cells can transfer mitochondria to unhealthy neighbors, offering a possible treatment for a group of rare genetic diseases, a Stanford Medicine study shows.
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Colleen Steckel @colleensteckel.bsky.social · 20/09/2026
Another study that showed #MyalgicEncephalomyelitis patients who fit the Canadian Consensus Criteria and those with #LongCovid have differences in biology. Study used small groups of patients and may not be a significant finding.
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Colleen Steckel @colleensteckel.bsky.social · 20/09/2026
Latest View from the Trenches of #MyalgicEncephalomyelitis covers updated research lists. If you are talking to someone who thinks ME is "fatigue" or a "psychological" disease, maybe share these lists showing variety of biological abnormalities. colleensteckelmeiccinfo.substack.com/p/myalgic-en...
colleensteckelmeiccinfo.substack.com
Myalgic Encephalomyelitis Research Lists Updated
Patient selection key to moving us forward
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sarah boothby @swastrosarah.bsky.social · 18/09/2026
www.crowdjustice.com/case/justice... Please share widely #ME/cfs #LongCovidME #HumanRights #NHSReform
crowdjustice.com
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
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Jennifer Todd @jentodd2026.bsky.social · 17/09/2026
We're ramping up speed towards the upcoming election, and we aren't slowing down! Join Jennifer Todd at 3 fundraisers- all at the end of September! For more info, visit the events page of our website: www.jentodd2026.us/events
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Colleen Steckel @colleensteckel.bsky.social · 16/09/2026
Running out of signs is a Good sign!
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Jennifer Todd @jentodd2026.bsky.social · 15/09/2026
It's National Voting Registration Day! Voting is a crucial part of our democracy, and making your voice heard is one of the best ways to support your community and what you believe in. Make sure you are registered to vote, and encourage your friends and family to do the same! 🇺🇸
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Jennifer Todd @jentodd2026.bsky.social · 14/09/2026
Join Jennifer Todd as well as other Federal, State and Local Candidates for a night at The Old Bakery Beer Co., hosted by the Greater Godfrey Democrats! For more info on the event, and to RSVP, you can follow the QR code in the image.
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Colleen Steckel @colleensteckel.bsky.social · 11/09/2026
" meeting the 1994 ME/CFS criteria and reporting substantial post-exertional malaise" I thought we had gotten past using Fukuda for research. To clarify that is not an ME/CFS crisis. That is the CFS-Fukuda criteria. A followup study using people who fit the ME-ICC is needed to validate results.
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Colleen Steckel @colleensteckel.bsky.social · 09/09/2026
New View from the Trenches of #MyalgicEncephalomyelitis article covers a few stories that reached outside the ME Bubble: EFNA article Tracking patients in Australia Anil Knighted for His Efforts France updates classification + more colleensteckelmeiccinfo.substack.com/p/news-2026-...
colleensteckelmeiccinfo.substack.com
News: 2026 September 8
Reaching outside the “Myalgic Encephalomyelitis Bubble”
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Rachel Maddow @maddow.bsky.social · 09/09/2026
republicans take food stamps away from 82,000 Indiana residents www.newsfromthestates.com/article/thou...
newsfromthestates.com
Thousands of Hoosiers removed from food assistance
Eighty-two thousand fewer Hoosiers are receiving benefits through the Supplemental Nutrition Assistance Program since President Donald Trump’s One Big Beautiful Bill Act took effect last October.The l...
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Rachel Maddow @maddow.bsky.social · 09/09/2026
trump and congressional republicans take food stamps away from 4000 kids in west virginia: www.newsfromthestates.com/article/4000...
newsfromthestates.com
4,000 fewer West Virginia children have SNAP since One Big Beautiful Bill Act passed
About 4,000 fewer West Virginia children have federal food assistance benefits as of May, a year after President Donald Trump’s One Big Beautiful Bill Act passed last summer, according to data from th...
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Colleen Steckel @colleensteckel.bsky.social · 03/09/2026
Grateful for this synopsis by Margaret Williams! Includes a lot of important historical information to help understand how people with ME ended up being badly misrepresented since the 90s - brought on by "The Wessely School". margaretwilliams.me/2026/short-s...
margaretwilliams.me
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Colleen Steckel @colleensteckel.bsky.social · 03/09/2026
Interesting studies discussed in the article. We need Doctors to know about the overlap between diseases like #Multiplesclerosis and #MyalgicEncephalomyelitis as well as the useful biomarker for Myalgic Encephalomyelitis. Patients need support for dysfunctional immune system! #Medsky
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Colleen Steckel @colleensteckel.bsky.social · 02/09/2026
0_o We in the #myalgicencephalomyelitis community have repeatedly seen that poor patient selection led to inaccurate results that led to not having access to meds that helped subgroups. "... participants within a single symptom group could land in any of the three dosing arms." That's concerning
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pumpkin @pumpkinstars.bsky.social · 31/08/2026
i need to add this to my recall list later but for now Heads up POTSies and #NEISvoid another recall for saline in USA the 100mL injections for iron oxide particles contaminating #POTS #MECFS www.fda.gov/safety/recal...
fda.gov
B. Braun Medical Inc. Issues Voluntary Nationwide Recall of 0.9% Sodium Chloride Injection USP, 100 mL, in a 150 mL PAB® Container Due to the Presence of Particulate Matter
FOR IMMEDIATE RELEASE – August 19, 2026– Bethlehem, PA, B. Braun Medical Inc (B. Braun) is voluntarily recalling three (3) lots of 0.9% Sodium Chloride Injection USP, 100 mL, in a 150 mL PAB® Containe...
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Adam @abrokenbattery.bsky.social · 30/08/2026
“Every aspect of living is impossible because it just aggravates the symptoms and makes you even more ill.” Interview with @naomiwhitt.bsky.social, describing life with Severe ME when she was unable to move and even the smallest sensory input could cause lasting deterioration. #MECFS
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Colleen Steckel @colleensteckel.bsky.social · 29/08/2026
This is worth sharing to help raise better understanding about what it's been like to seek medical care while having #MyalgicEncephalomyelitis I am starting to hear similar stories from people with #longcovid hillaryjohnson.substack.com/p/when-does-... We need better medical education!
hillaryjohnson.substack.com
When does medical illiteracy turn into abuse?
Eleven syllables you must never say in hearing range of an illiterate doctor
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Colleen Steckel @colleensteckel.bsky.social · 26/08/2026
I think it is important to recognize this did not use the ME-ICC. It used the ME/CFS-IOM report. That definition encompasses patients who don't have ME as defined by the experts in the International Consensus Criteria. See IOM info here: colleensteckelmeiccinfo.substack.com/p/mecfs-iom-...
colleensteckelmeiccinfo.substack.com
ME/CFS-IOM is a clinical criteria
Not a research criteria
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Colleen Steckel @colleensteckel.bsky.social · 26/08/2026
This list includes a lot of accommodations useful for work and school.
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Colleen Steckel @colleensteckel.bsky.social · 26/08/2026
Excellent article! Please take a minute to read this important message. There are things we can do now to improve the lives of people with #MyalgicEncephalomyelitis!
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Colleen Steckel @colleensteckel.bsky.social · 26/08/2026
Ona Albizu makes very important point that there are ways to improve the lives of people with #MyalgicEncephalomyelitis now! Stopping harm would go a long way to improving our quality of life.
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ME Association @meassociation.org.uk · 26/08/2026
3/3: IMPORTANT: You must have completed, signed and dated a Statement of Intent that is on record. Family members CANNOT make this request OR state it was your wish to donate after death.  Find out more: 
meassociation.org.uk
The ME Association announces new post-mortem research partnership with Manchester Brain Bank - The ME Association
The MEA Ramsay Research Fund will be funding detailed examinations of the brain, spinal cord and dorsal root ganglion.
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Colleen Steckel @colleensteckel.bsky.social · 23/08/2026
We know more about #MyalgicEncephalomyelitis than most realize. "...evidence implicates abnormalities involving endothelial function, oxygen extraction, autonomic regulation, lactate metabolism, coagulation pathways, metabolic flexibility, glucose homeostasis, and lipid metabolism" #Medsky
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Colleen Steckel @colleensteckel.bsky.social · 21/08/2026
While this used the ME/CFS-CCC instead of the ME-ICC, it shows we need to stratify between LongCovid & Myalgic Encephalomyelitis. RVA = retinal vessel analysis
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Kelly @broadwaybabyto.bsky.social · 21/08/2026
“If it’s that bad you should go to the hospital”. The hospital is not a solution for many disabled people. Most of us have endured severe medical trauma. ERs are not equipped to deal with complex chronic illness and will often make a bad situation worse. We can’t “just” go to the hospital.
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Litsa Dremousis @litsadremousis.bsky.social · 12/08/2026
If the CDC hadn't renamed #MyalgicEncephalomyelitis "chronic fatigue syndrome" in 1988 & if his Dr. Stephen Strauss & Dr. Fauci hadn't derailed M.E. research at the NIH in the early '90s--they wrongfully called us crazy--we would've likely had at least a treatment by now. Malpractice writ large.
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Colleen Steckel @colleensteckel.bsky.social · 12/08/2026
Good to see mainstream news share this important research finding.
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Rachel Maddow @maddow.bsky.social · 10/08/2026
www.springfieldnewssun.com/tncms/asset/...
springfieldnewssun.com
Hundreds rally at site were Haitians required to check-in, get monitors after end of TPS
Hundreds of people gathered outside a federal immigration office Sunday morning to show support for Haitian immigrants from Springfield who were called to report for immigration check-ins.
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David Archer @davidetc.bsky.social · 09/08/2026
Today is #SevereMEawareness Day, so I'll just leave this here. It does a good job illustrating how this chronic illness wrecks people's lives and why they can't advocate for themselves. Art by Kornelia Paulsen #MECFS #chronicillness
A graphic with 6 boxes: 1) M.E.: How it can shrink one's life bits by bits. 2) Before M.E.: A cityscape cartoon with work, cafe, party!, travel, gym, houses. 3) "Mild M.E." Work and home stand on a pillar. 4) "Moderate M.E." Just the home is on the pillar. 5) "Severe M.E." Just the bed is on the pillar. 6) "Very severe M.E." The box is dark.
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Colleen Steckel @colleensteckel.bsky.social · 08/08/2026
View from the Trenches of #MyalgicEncephalomyelitis latest article covers #SevereME day for 2026. Includes news and resources. open.substack.com/pub/colleens...
open.substack.com
Recognizing Severe Myalgic Encephalomyelitis
August 8, 2026
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Mads @blueforpwme.bsky.social · 08/08/2026
#SevereMEDay 25% group People seem to think M.E. is this mild, ineffectual disease. It is not. It’s a severely life affecting, life limiting, life changing neurological, neuro-immune disease of the brain and spinal cord. In turn, a multi-system issue (lack of oxygen to tissues, perfusion etc)….
Bold white text in capital letters reads: SEVERE M.E. DAY and underneath reads the date: 08.08.2026 set against a gradient blue background from dark to light top to bottom.
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Colleen Steckel @colleensteckel.bsky.social · 04/08/2026
From Myalgic Encephalomyelitis International Consensus Primer (over a decade ago) "cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand." NIH didn't really move the ball forward! drive.google.com/file/d/1A0Bv...
drive.google.com
ME-ICC Info - English MEICPrimer 2012.pdf
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Colleen Steckel @colleensteckel.bsky.social · 03/08/2026
Latest View from the Trenches of #MyalgicEncephalomyelitis discusses pushback on recent article published in Wired. While their article's main focus is about #LongCovid, it underscores the problems we all face when misinformation is spread by mainstream media. open.substack.com/pub/colleens...
open.substack.com
Wired Article Angers Patients/Advocates
Focus is on Behavior Modification for Long COVID
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Jennifer Todd @jentodd2026.bsky.social · 01/08/2026
Did you see that cuts to Medicare and Medicaid are coming in 2027? Did you know that Mary Miller voted for them? I will fight to protect the healthcare our seniors and rural communities depend on. If you are with me please click the link to donate today. secure.actblue.com/donate/jenni...
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Colleen Steckel @colleensteckel.bsky.social · 01/08/2026
There is a lot of research showing biological issues in #LongCovid & #MyalgicEncephalomyelitis. While there are differences between the 2, there are some important findings that apply to both. I think the TRPM3 research deserves much more attention! Patients deserve knowledgeable Drs. #Medsky
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Tom Kindlon @tomkindlon.bsky.social · 01/08/2026
One week ago to August 8, #SEVEREMEDAY I have a Pinterest board with 714 pins on #severeMECFS here ie.pinterest.com/tomkindlon/m... that could be shared around. It mainly contains images but also links to videos & articles You don't need to be on Pinterest #SevereME #MEcfs #PwME
August 8. Severe ME day. Blue ribbon logo. #SEVEREMEDAY 
Solve ME/CFS Initiative logo.
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Esther @elhopkins.bsky.social · 01/11/2025
It’s worth reading this interview from Dr Fauci. Full article below, this exact is a long way down.
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Colleen Steckel @colleensteckel.bsky.social · 30/07/2026
A Life Hidden has published another excellent piece that covers an aspect of living with ##MyalgicEncephalomyelitis that is seldom discussed. alifehidden.com/2026/07/30/b...
alifehidden.com
The Burden of Chronic Illness That I Rarely Talk About
Being ill is hard.  What an obvious thing to say – and yet how often it goes unspoken.  I’ve written about many aspects of life with long-term illness: from the grief of dreams shat…
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Colleen Steckel @colleensteckel.bsky.social · 28/07/2026
Myalgic encephalomyelitis patients diagnosed using Canadian Consensus Criteria (ME/CFS-CCC) Another study that saw some similarities but also a difference between ME and LongCovid. "...whereas only patients with ME/CFS exhibited lower capillary to fiber ratios and type I specific atrophy."
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Colleen Steckel @colleensteckel.bsky.social · 27/07/2026
Good to see they are using the CCC for patient selection. For those not familiar with the Canadian Consensus Criteria (ME/CFS- CCC) this article explains that ME/CFS has multiple meanings. open.substack.com/pub/colleens...
open.substack.com
ME/CFS is an umbrella term
Is fruit an apple?
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Colleen Steckel @colleensteckel.bsky.social · 24/07/2026
Having lived in an area that carries this pathogen, I met people with this disease. I am aware of at least one given a CFS diagnosis before getting the Valley Fever diagnosis. It is important to be thoroughly screened in order to get access to latest treatments.
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Colleen Steckel @colleensteckel.bsky.social · 20/07/2026
So important to stratify patients into groups to catch these different findings. #MyalgicEncephalomyelitis & #LongCovid have overlapping symptoms but we are seeing biological differences.
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Colleen Steckel @colleensteckel.bsky.social · 20/07/2026
Latest View from the Trenches of #MyalgicEncephalomyelitis covers: ME Global Chronicle #57 US News: Medicare Advantage rules changing, Medicaid work requirement rule update, GLP-1 covered by Medicare bridge program View from the Trenches of ME is free to read. open.substack.com/pub/colleens...
open.substack.com
News: 2026 July 19
ME Global Chronicle #57, US News: Medicare Advantage rules changing, Medicaid work requirement rule update, GLP-1 covered by Medicare bridge program
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Contagion® @contagionlive.bsky.social · 20/07/2026
The source of the outbreak has been determined and Dr. Catherine O’Neal offers insights on symptoms that warrant medical evaluation, and what treatment may be for those being seen in an outpatient setting or those who are hospitalized. #cyclosporiasis www.contagionlive.com/view/the-lat...
contagionlive.com
The Latest on the Cyclosporiasis Outbreak: Recalled Products, and What Treatment Looks Like | Contagion Live
The source of the outbreak has been determined and Catherine O’Neal, MD, offers insights on key symptoms that warrant medical evaluation, and what medical treatment may consist of for those being seen...
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Jennifer Todd @jentodd2026.bsky.social · 16/07/2026
Jennifer Todd's commitment to lowering costs, protecting rural health care, and standing up for working families has earned her the endorsement of Citizen Action Illinois. "Thank you, Citizen Action Illinois, for your endorsement and for standing with me in this fight for working families."
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Jennifer Todd @jentodd2026.bsky.social · 19/07/2026
I'm headed to the Piatt County BBQ today! Before I take off, as a nurse, I want to remind everyone to take precautions. If your health could be compromised, please stay indoors with filtered air if possible and check on older neighbors. Stay safe, take care of one another, and hope to see you soon!
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