Tessera
Folgen

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

1918 Posts2677 Follower1770 Folgt
Mads@blueforpwme.bsky.social · 4d ago

#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.
Colleen Steckel@colleensteckel.bsky.social · last wk.

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

TRAstonDrs@castltrastondrs.medsky.network · 2w ago

onlinelibrary.wiley.com/doi/10.1002/... link.springer.com/article/10.1... www.frontiersin.org/journals/mol... onlinelibrary.wiley.com/toc/15214141...

Colleen Steckel@colleensteckel.bsky.social · 2w ago

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."

Tom Kindlon@tomkindlon.bsky.social · 2w ago

Rob Wüst, corresponding author of the new paper: "Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest" www.nature.com/articles/s41... Link to his full post www.linkedin.com/posts/rob-w%... #MEcfs #LongCovid

Rob Wüst • 2nd Associate Professor | Vrije Universiteit Amsterdam | Physiology | Human Movement Sciences | Metabolism | Microscopy | Chronic Diseases 4h • Edited • Connect I am incredibly proud to share our latest study, published today in Nature Communications, as a follow-up from our 2024 Nature Communications paper. https://lnkd.in/dij5WTNk People with long COVID and ME/CFS are often told that their reduced exercise capacity and muscle abnormalities are simply the result of physical inactivity or “deconditioning.” We tested this assumption by comparing patients with healthy individuals who underwent 60 days of strict bed rest. Although prolonged bed rest had major effects on physical fitness and skeletal muscle (see also: https://lnkd.in/dhx8JNQi), these changes were distinctly different from those observed in long COVID and ME/CFS. Our main conclusion: physical inactivity alone cannot explain the reduced exercise capacity and skeletal muscle abnormalities in these diseases. This is important because it shows why a simple “just exercise more” approach does not reflect the underlying biology, particularly for people who experience post-exertional malaise. We need to understand the disease-specific mechanisms and develop safe, tailored treatments.
Colleen Steckel@colleensteckel.bsky.social · 2w ago

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...

ME/CFS is an umbrella term

Is fruit an apple?

open.substack.com

ME/CFS Science@mecfsscience.org · 2w ago

1) 🇩🇪 There's now more info about the PIONEER study which will test inebilizumab (a drug that targets B-cells), in a subgroup of ME/CFS patients. It's a randomised trial at the Charité that aims to include 38 participants.

Screenshot of the trial registration for the PIONEER trial on inebilizumab
Colleen Steckel@colleensteckel.bsky.social · 3w ago

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.

Amesh Adalja@ameshaa.bsky.social · 3w ago

“A new antifungal drug, Olorofim, actually kills the valley fever fungus and, in a small trial of severe cases, helped stabilize or improve most desperately ill patients” apple.news/AJTt1hKu0Twe...

Colleen Steckel@colleensteckel.bsky.social · 3w ago

So important to stratify patients into groups to catch these different findings. #MyalgicEncephalomyelitis & #LongCovid have overlapping symptoms but we are seeing biological differences.

valebodi.bsky.social@valebodi.bsky.social · 3w ago

Results: Compared with healthy controls, individuals with #ME/CFS showed microstructural alterations in the cingulum, supplementary motor areas, and parts of the corpus callosum (all p < 0.05). Long COVID participants demonstrated microstructural alterations in regions including the fusiform and

Colleen Steckel@colleensteckel.bsky.social · 3w ago

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...

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

open.substack.com

Contagion®@contagionlive.bsky.social · 3w ago

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...

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...

contagionlive.com

Jennifer Todd@jentodd2026.bsky.social · 4w ago

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."

Bild
Jennifer Todd@jentodd2026.bsky.social · 3w ago

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!

Colleen Steckel@colleensteckel.bsky.social · 4w ago

We need medical professionals (especially neurologists) to know that glymphatic function is impaired in #MyalgicEncephalomyelitis. We also need them to know that exercise is NOT safe for anyone with ME. www.sciencedirect.com/science/arti... #Medsky #Neuroskyence

Exercise as a regulator of glymphatic function

The glymphatic system is a brain-wide perivascular network hypothesized to facilitate the clearance of waste products that accumulate during normal br…

sciencedirect.com

Colleen Steckel@colleensteckel.bsky.social · 4w ago

Considering the recent findings that glymphatic drainage in #MyalgicEncephalomyelitis is impaired this could be an important diagnostic tool! We need the wider research community to think about ME when doing neurological research. #neurosky #medsky #neuroskyence

Science Magazine@science.org · last mo.

Researchers in #ScienceAdvances have created a soft wearable patch that can be placed on the forehead to monitor brain water dynamics during sleep. https://scim.ag/4wzsC62

Colleen Steckel@colleensteckel.bsky.social · last mo.

This thread ends with a link to get blood testing... it's likely out of financial reach for many but it shows there is testing that could be used to better understand what is happening.

Jack - amatica health@jackamatica.bsky.social · last mo.

Mitochondrial findings in ME/CFS and Long COVID include altered fuel use, lower energy efficiency, immune-cell energy stress, muscle-cell abnormalities and worse muscle findings after PEM. This thread breaks down what that means in simple language.

Colleen Steckel@colleensteckel.bsky.social · last mo.

"Although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account." But are they being taken fully into account? From what I hear from people who are living under the "me/cfs" NICE guidelines many medical personnel are ignoring them.

DHSC Answers@dhsc-answers.bsky.social · last mo.

A question on #ME/CFS #HealthServices tabled by Tom Morrison on 25-06-2026 has been answered by Mrs Sharon Hodgson. https://questions-statements.parliament.uk/written-questions/detail/2026-06-25/13299

Colleen Steckel@colleensteckel.bsky.social · last mo.

The neurological issues we already knew about in Myalgic Encephalomyelitis were pretty bad. Add this to the mix and it's no wonder people with ME have so many cognitive issues. We need more neurologists to understand the reality and take patients seriously. #medsky #neurosky

Science X / Phys.org@sciencex.bsky.social · last mo.

First MRI evidence in ME/CFS points to impaired brain waste clearance. The sleep-linked disruption may help explain brain fog. doi.org/hb9gsf