Colleen Steckel

A text: ‘Submissions now open!’ Below it a hand-written text reads ‘Myalgic Encephalomyelitis Kills’. A text: ‘An online Group Exhibition’.

The submissions for our open call online group exhibition, Myalgic Encephalomyelitis Kills, are now open on our website!

More details on the website, and the original statement is linked down below.

www.aquietstorm.me/open-call-me...

#MECFS #pwME #OpenCall #Art

Weather changes are wicked here. Feels like I am being squeezed (not in a good way)...

The lab tests the experts recommend for #MyalgicEncephalomyelitiscan can be found in the ME IC Primer. Link to ICP in multiple languages found here: drive.google.com/file/d/1OLvC...

That has some good guidance based on my 36+ years living with ME.

Maybe I missed it but magnesium supplements are key for my muscle function and sleep.

I (and I know others) had very bad reaction to amitrptyline. Very hard to get off of...

Checking for MTHFR gene mutation would also be good.

Understatement!

To clarify... a lot of things affect my cognition. LDN helps me overall so it does help that but I still have to be very careful to avoid triggers. One of those triggers is chemical odors. They severely affect my brain...

Finding my triggers helped my quality of life a lot.

I didn't tolerate pain meds so my pain was poorly controlled. Acupuncture and TENS unit helped but LDN has helped the most to keep pain mostly tolerable.

For me cognition crashes when I overdo. LDN helps me feel better so I have to be careful to not do more than my energy production could handle.

Low Dose Naltrexone (LDN) for Myalgic Encephalomyelitis More than just a pain reliever

I found it helpful. Taking since 2014. The experts who wrote the International Consensus Primer for #MyalgicEncephalomyelitis recommend starting low and increasing slow for meds. That is good advice for LDN as well. I wrote about it here: open.substack.com/pub/colleens...

Patients fit the Canadian Consensus Criteria.

Findings may point to a viable Biomarker.

"Unexpected" 0_o

Really?

CDC: Too Few Older, At-Risk Adults Receive Antiviral for COVID-19 | Contagion Live Despite increased risk for severe outcomes, most older adults and those with comorbidities do not receive antiviral treatment for COVID-19.

Despite increased risk for severe outcomes, most older adults and those with comorbidities do not receive antiviral treatment for COVID-19. #IDsky #Medsky

RACGP logo AJGP Logo Advertising AJGP > March > Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome Viewpoint Volume 55, Issue 3, March 2026 Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients? Jacqueline Stallard Stephan Praet Sandeep Gupta Angela Smith doi: 10.31128/AJGP-03-25-7614 | Download article Cite this article BIBTEX REFER RIS

Well done and thanks to the authors of this piece which seems to be well researched 👍👏

Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome / myalgic encephalomyelitis harming patients?

www1.racgp.org.au/ajgp/2026/ma...

#MEcfs #CFS #PwME

US releases names of 4 service members killed in the Iran conflict The fallen servicemembers were identified as Captain Cody Khork, Sgt. 1st Class Noah Tietjens, Sgt. 1st Class Nicole Armor, and Sgt. Declan Coady.

The fallen servicemembers were identified as Captain Cody Khork, Sgt. 1st Class Noah Tietjens, Sgt. 1st Class Nicole Armor, and Sgt. Declan Coady.

That's great to hear!

Glad to hear your doctor may be useful. That is not always the case.

ME - Management & Treatment Antioxidants

Please reach out via dm if you want to talk.

Some info here about some things I found helpful.

open.substack.com/pub/colleens...

Nothing about this is easy. I have had trouble at times envisioning a better future. My capacity to do more than survive has fluctuated over the years. Better management options have improved my quality of life. Some years much better than others.

ME since 1989....

Hope you feel stronger soon.

Treating my low blood volume with weekly IV fluids has improved my quality of life...

While not a cure, educating doctors about our low blood volume could lead to more effective management of #MyalgicEncephalomyelitis.

open.substack.com/pub/colleens...

From the description, I am pretty sure it is the NIH intramural study that many of us had objection to that introduced the effort preference narrative.

The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 4) This is Part 4 of a four-part article on NIH’s Effort Preference claim. Part 1 can be found here. Part 2 can be found here. Part 3 can be found here. Readers who are not intricately familiar with M…

That looks to be the NIH study so many of us responded negatively to because of the poor patient selection, poor study design and the effort preference narrative. See info here: thoughtsaboutme.com/2024/06/20/t...

News: 2026 Feb 28 Neuroimmune, Extension of Medicare telehealth, Bills in Congress to cancel WISeR, Fighting insurance denials, plus a personal note

New article from View from the Trenches of #MyalgicEncephalomyelitis covers:

- #Neuroimmune Dr's should include ME
- Extension of Medicare telehealth
- Bills in Congress to cancel WISeR
- Fighting insurance denials

open.substack.com/pub/colleens...

I was shocked what a difference it made. I do keep an eye on my blood levels as too much vit d is supposedly a problem. The lab test here says normal range is from about about 15 to 90. I aim for around 70, so higher range of normal. I took 5,000 iu daily for a long time. Now just 3 times a week.

I doubt it was coincidence... having watched this tug of war for decades it is a pattern we have seen before.

Really sorry about your loss... we have lost far too many to this disease.

Charity - 25megroup.org

For research I like the deep science PolyBio is doing... it isn't Severe ME specific though. polybio.org

There is nothing easy about coping with ME... especially in a crash. Being scared is a reasonable reaction. Hopefully it eases soon.

I went through a bad episode of dizziness. Felt like on a rocking boat. Not my normal level of sickness. Over 20 years with ME at that time.

Turned out to be low vitamin D. After getting that in higher range of normal I returned to baseline... dizziness backed off. I keep my vit D levels up!

Agreed! We have seen decades of mislabeled patients that caused harm and death...

Myalgic Encephalomyelitis Research Brief Update on research lists

It is a lot to keep up on. I track it as best I can... with a lot of help...

In case you are wanting to see more about the research, I explain how I track it here:

open.substack.com/pub/colleens...

The biological findings support the feeling that every cell is not making energy like it should.

Between the oxidative stress affecting oxygen exchange, the microclots affecting the blood supply and the channelopathy affecting calcium entering cells the mitochondria are severely impaired.