Good lord, yet another claim that "mind-body approaches" heal #MECFS. I could write a dissertation around why that is factually incorrect, why people want to believe power of the spirit can overcome pathogenicity despite all evidence, and how institutionalized medicine benefits from the narrative.

I was chatting with my old mentee today at work and when I told her about my health she began to cry. She had all these questions: Is there anyone you can sue? Did you get the wrong meds? It’s hard for ppl to internalize that we’re just stuck like this. #mecfs #longcovid

Interesting to see another opening pressure #ME/CFS study! I was recently diagnosed with “borderline” IIH, but these studies make me think I’ve probably had elevated pressure for years. That doesn’t explain why I suddenly developed IH symptoms though (mild vision issues, positional headache).

Science for ME (S4ME)@s4me.info · 2d ago

Cerebrospinal fluid opening pressure in relation to symptomatology and craniocervical anatomy in patients with myalgic encephalomyelitis/chronic fatigue syndrome — Jolley et al #MECFS

CIDRAP: "Study details long COVID’s effect on patients’ wellbeing" '“The findings underscore that the burden of long COVID extends beyond clinical health outcomes to encompass how individuals evaluate and experience their lives" www.cidrap.umn.edu/covid-19/stu...

Study details long COVID’s effect on patients’ wellbeing

cidrap.umn.edu

In morning stand up people talk about their weekends: Buying an e-scooter Horse back riding Using a spa pass I have to make up something bc it’s kind of a mood killer to say, “I was in a dark room all weekend and could barely use my arms & legs.” #mecfs #longcovid

Science Alert: 'Long COVID Patients Have 18% Fewer Dopamine Nerve Endings, Brain Scans Reveal' www.sciencealert.com/long-covid-l...

Long COVID Patients Have 18% Fewer Dopamine Nerve Endings, Brain Scans Reveal

COVID-19 can cause brain injuries that are still visible on scans years later in people with neurological symptoms related to long COVID.

sciencealert.com

Cornish & Devon Post: 'Woman from Wadebridge shares hidden realities of severe ME' 'Hailee Williams, 42, from Wadebridge was bedbound for a number of years due to the symptoms of her severe ME' www.thepost.uk.com/news/health/...

Cornwall woman shares hidden realities of severe ME

Despite living with chronic pain, Hailee’s story is also one of hope and resilience

thepost.uk.com

I’ve now seen three separate articles complaining about people needing mobility aids, all from different papers, and it sure seems to strain the boundaries of coincidence.

This is what they think is happening in my nose.

valebodi.bsky.social@valebodi.bsky.social · 2d ago

The Association Between COVID-19 and Herpes Zoster in Adult Populations: A Systematic Review Most studies demonstrated a temporal association between COVID‑19 infection and HZ occurrence. HZ rash developed from two days before COVID‑19 symptoms and up to 70 days after infection, with an average

As someone who is pro vaccine, I am also honest that I had some lingering symptoms after my third shot. Nothing big, but I got tired more easily and my feet and hands would get tingly after exercise.

Harriet Carroll: Long Covid Scientific Consultancy@angryhacademic.bsky.social · 2d ago

Rare Complete Restoration of Intraepidermal Nerve Fibre Density by Immunoglobulins in Post-COVID Vaccination Syndrome-Associated Small Fibre Neuropathy: A Case Report and Literature Review www.cureus.com/articles/512... After IVIG, nerve fibre density & symptoms improved.

I have been using THC: CBD patches for the pain this week. They are the only thing that really touches it, but I do not like how they make me feel. I tried 24 hours without one yesterday and the pain level is back up. The PR lotion helps a bit. This is #longcovid #mecfs

I want to talk about how the thought of #maid this week has been a solace for me. Do I want to do this? No. Do I plan to do it anytime soon? No. Would I much rather be living my life. Duh. But my brain needed something to help with the pain. This is the reality of #longcovid #mecfs

Eli Lilly and Company review, highlights an EBV–ABC pathway in MS. EBV can push B cells into a T-bet+CXCR3+ state that homes to the CNS and recruits inflammatory T cells. onlinelibrary.wiley.com/doi/10.1111/...

Age‐Associated B Cells: Origins, Regulation, and Tissue‐Specific Pathogenic Contributions in Autoimmune, Metabolic, and Neurological Diseases

Age-associated B cells (ABCs) are a distinct B cell population characterized by coexpression of T-bet and CD11c. First described in aged female mice and autoimmune-prone strains, ABCs are now recogni...

onlinelibrary.wiley.com

There is a reason why many people you know seem different now. Not quite who they were before. www.psypost.org/brain-scans-...

Brain scans reveal widespread structural and functional changes in patients following COVID-19 infection

A systematic review of 49 imaging studies highlights how COVID-19 affects the human brain. Researchers found widespread structural and functional changes in areas responsible for memory, emotion, and ...

psypost.org

ME scales are often very personal and I fall on the moderate/severe side and am still dealing with the denial of the severity of this disease for me. Honestly, today it’s been hard to see posts as I’ve been I’m beholden to a darkened room trying to get out of this crash. I hate #mecfs #longcovid

💙 Today is Severe ME/CFS Awareness Day. Severe ME/CFS can leave people bedbound, unable to tolerate light or sound, and dependent on others for basic care. This publication highlights why greater recognition and care are urgently needed: https://bit.ly/4fi8aRp #SevereME #MECFS

My blood work shows both are reactivated. #longcovid #mecfs

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

There is actually quite a bit of evidence suggesting that two herpesviruses, Epstein-Barr virus and cytomegalovirus may be potential drivers of long COVID. For instance, people with long COVID have significantly higher levels of Epstein-Barr virus antibodies. These are both extremely common viruses;

Today is Severe ME Day. I wanted to post today about falling from moderate/severe ME into severe ME 4 1/2 years ago. Yesterday, I sat in my wheelchair a little too long. Today, I’m wrecked. Severe ME is totally unforgiving. (My daughter is writing this.)

The whole reason we need NIH funding basic research is because without immediate profit-motive, private companies won’t/can’t fund it themselves. This is bedrock research everything else is built on. Like so many moves by this admin, a lot of ppl will suffer & die far into the future for this.

Liz Neeley@lizneeley.bsky.social · 5d ago

A scientist who just lost her grant cuts straight to the heart of it: “Requiring that NIH only fund work leading directly to a drug or other biomedical intervention… would rule out much basic research funded by the agency.” It’s pathetic & harmful to limit our understanding of health like this

"Persistent ocular symptoms following COVID-19" "Researchers have outlined a range of ocular symptoms affecting individuals from 3 months to 3 years after a COVID-19 infection" Source: archive.md/MSVbh

Hey it’s #SevereMEDay. I have severe ME. The severe category is a ginormous range tho because I’m so much better than I was, and I never felt like I crossed to “very severe” tho I suppose I was on the edge for a bit. I spend most of my time horizontal in bed in a room with the curtains drawn.

Nader talked about this in the 90s. People don’t vote for things they support. Chomsky explains it as cognitive dissonance. In my years of canvassing I've learned appealing sensibly to folks doesn’t matter. We need a progressive juggernaut to appeal to their emotions.

The Tennessee Holler @thetnholler.bsky.social · 3d ago

Reminder: progressive is mainstream

Sunrise, Saturday, 9 August, from Okitu Beach, Aotearoa / New Zealand. I chose this spot as there’s a cool little natural small bridge in the reef rocks. Ata mārie / Good Morning ☀️

Today @thesicktimes.org: In recognition of Severe ME Awareness Day, we republished excerpts from the new book What Is ME Like? focusing on Severe ME. Many thanks to the WIMEL team for allowing us to share their powerful work 🙏🏻 thesicktimes.org/2026/08/08/t...

“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’ - The Sick Times

Essays focusing on Severe Myalgic Encephalomyelitis (ME), from a new book by an international group of writers documenting their ME experiences.

thesicktimes.org

The last rays of sunlight found the reeds before the day slipped below the horizon. #photography #naturephotography #fujifilm #skandiphotographer

“When I see such severe patients, I can't believe they haven't explained something like that to us in medicine, and if they don't teach them to us, we don't know.”

Mari Carmen@macala0902.bsky.social · 3d ago

#SevereMEDay #EMsfc #MEcfs www.20minutos.es/capaces/ence...

This photography print by Whitney Dafoe sits on my bookshelves in the room in which I spend most of my time. For me it evokes grief & time, the gloom & haze of illness, hope of sun peeking through, the power of nature in a world that continually goes on, a pathway into the unknown. #SevereMEDay

You are just one virus away from a life confined to a bed, living with unimaginable pain and symptoms you never imagined could exist. Nobody expects you to fully understand it unless you’ve lived it. But a little compassion can make a world of difference. #SevereMECFS

This was a ROUGH week. Even though it was a full week of work there were two days where I did absolutely nothing bc I was in so much pain. Leg pain is deep and intense. Also tingling. #mecfs #longcovid are awful weird diseases.

Just a fun little memory from snowboard instructing in Australia. Australia breathalyzes folks in the morning. You’d often have a check point on the way up the skill hill. Also, at the entrance of instructor locker rooms they’d have a breathalyzer posted up. Which meant, of course, you’d get