here i am. here is my shell. my spirit comes in waves. today i am drowning, high tide, ripped along the undertow, abraded by shingle, tossed every which way, i know not which is up, down nor ahead.....

Great study. Confirms my choice to get on oestrogen, instead of just progesterone. Also 5HTP has been a winner for me in terms of 💤. Now just to get in a bit of inulin and F. prausnitzii for my poor ole guts. #MECFS #pwme #MHT

so this clonidine thing is not really working for me. 1st few weeks 👍🏼 Garmin body battery showed daytime recharge (usu. unheard of), hot flushes less frequent, lasting far less, HR down. But now, sleepless nights with nightmares and a hot flush that lasts all fucking night long. #MCAS #MECFS

I don't know if anyone with #MECFS has experienced this, using the #Visible app, but this morning my finger (on the torch) was about to explode with the amount of needle sensations I was feeling. I've already alternated fingers due to the tingling I get from it, but this was insane.

I relate. #MECFS #DogDays

seeing my fab doc again today. do I have enough time to go thru this list of tx? haha www.pnas.org/doi/10.1073/... Great study by Martha Eckey (Long Covid Pharmd on Substack) 🙏 #MECFS #LongCovid

when I first got sick (nearly 8 incredibly long years ago) my MMP9 readings were off the chart. Sadly, no GP really understands what they do and how to bring the reading down. Hopefully this will enlighten us all. #MECFS

My barbershop wheelie stool is one of my greatest assets whilst in the throes of #MECFS. When you account for the fact that a pair of legs weighs a whopping 1/3 of your total body weight, it makes sense to stop hauling them around, and sit your arse down as much, and as often, as you can.

We can stop AUKUS! getup.to/4XjQ7tyC1B4uE $368B! that's a lot of research into #MECFS, investment in public housing, disability services etc. Plus, who the hell in their right mind would get into bed with the US right now?

Been thinking about peptides for my worsening gut issues, had heard of BPC-157 and came across this. Seems like it helps SO much more than gut issues. Anyone with #MECFS or #LeakyGut can corroborate?

TREATME: the Open Medicine Foundation’s Mammoth ME/CFS and Long COVID Treatment Survey Results #MECFS #longCOVID www.healthrising.org/blog/2025/07...

OMF StudyME is a free global recruitment tool that connects individuals interested in participating in research studies with the researchers conducting them. Sign up to help accelerate research into #MECFS and #LongCOVID 👉 www.omf.ngo/studyme.

Piperacillin Kills Lyme Bacteria in Mice, Leaves Gut Microbiome Alone. Already FDA-approved for pneumonia, the antibiotic shows promising results for Lyme disease. www.lymedisease.org/members/lyme...

Donate blood to AusME Biobank and accelerate ME/CFS and long COVID research! If in NSW/VIC and have these conditions or are a willing volunteer, join at vist.ly/3n8xtm9.

This project will include metabolomics, proteomics, cytokine panels, lipidomics, and more on plasma samples from #pwME, disease controls, and healthy controls. Read more about Bioquest and its potential to identify a biochemical signature to diagnose ME/CFS: www.omf.ngo/me-cfs-new-b...

Join Emerge Australia's free live sessions on NDIS and DSP for ME/CFS and long COVID. Learn about the application process, eligibility, and presentation of evidence. Note: unrecorded sessions, may not apply if you don't have the ailments. Register here: vist.ly/3n8aqm7

www.earth.com/news/scienti... This is fascinating. Are they researching #MECFS within identical twins?

In this video, Dr. David Putrino discusses the nuanced relationship between movement, heart rate variability ( #HRV), and post-exertional malaise ( #PEM) in people living with complex chronic illnesses like #ME/CFS, Long Covid, Fibromyalgia, and Chronic Lyme Disease. youtu.be/pfoxIWgmWrM?...

Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID #MECFS #longcovid www.healthrising.org/blog/2025/05...

wait, why have you blocked me @exceedhergrasp1.bsky.social ? what did I do?

Health Rising: “Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID” www.healthrising.org/blog/2025/05...

This. #MECFS

Dr Nick Yim - more politician than GP? What happened to Borellia species that HAVE been found here? Michelle Wills' research found that 42% of the ticks she sampled contained a borrelia-like spirochete that most closely resembles the European Borrelia species Borrelia garinii and Borrelia afzelii.

www.sciencenews.org/article/figh... '“Something is being left behind that is continuing to elicit an immune response,” says study coauthor Mecaila McClune' #LymeDisease #MECFS

I'm sorry. Why do our loved ones get to have all the fun? Can't they do a sponsored stay-in-bed for 7 years? 😉 #MECFS

Ha! If I was in the US, I'd be diagnosed with Lyme. But I'm not. I'm in Australia, where Lyme "doesn't exist". Instead, I have DSCAAT (Debilitating Symptom Complex Attributed To Ticks)! Where's the research here? #MECFS

I wonder if there's been much research on the li'l ole appendix and #MECFS #LongCovid ? Could this be a key to our understanding?

🤞🏼that the NHMRC take on these pointers. 7 yrs ago my rheumatologist prescribed GET. This year his report says this was detrimental. No apology, but at least he's changed his tune. #MECFS

Thank fuck for that #auspol

"People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome May Have an “Exhausted” #Immune System A long-awaited study of people with #MECFS revealed differences in their immune & nervous system. Findings may offer clues about long COVID." www.scientificamerican.com/article/peop... #longCovid

WTAF? scary as all hell

So, adding 5HTP to my sleep mix is def. helping. You know what else is helping? Nicotine patches. Once I get past the "gotta take it off at 6pm or I won't sleep" stage (1st week or so), then my sleep's better, my poo is better, I'm better. #MECFS #TheNicotineTest

these crowds are in my head: on the rare occasion that 1. it's not only sunny but 2. the sunny coincides with me having the energy to manage the 10 paces to get into my sunny courtyard. #MECFS 👏🏼👏🏼[and the crowd went wild!!!]👏🏼👏🏼

When you thought it was #MECFS, but it was really just a humdinger of a day 😅

Breathwork. Breathwork. Breathwork. And Mindfulness. #MECFS #LongCovid www.healthrising.org/blog/2025/04...

8 weeks of 7mg nicotine patches and.... hello HSV2, how kind of you to stop by. #MECFS #TheNicotineTest #HSV2 Wah-wah 🎺

This is a very important finding. As discussed in a few of our Unraveled: Understanding Complex Illness episodes, glymphatics and the blood brain barrier disruption play key roles in the CNS pathology of Long Covid and ME/CFS.

I've been privileged to work with Adena for almost a decade (😱) and beyond grateful to have her working with @CoRESinai to assist people with #LongCOVID, #MECFS and chronic tick- and vector-borne illness. Her depth of knowledge never ceases to amaze 🙏 www.youtube.com/live/bJQmeye...

LDN, Acetyl L-carnitine, d-ribose, COQ10, SPM, Magnesium, active B-complex, NAC, CBD/THC, L-theanine -just some of a long list of supps that help me not become a pool of dribble in my bed. #MECFS are we having fun yet?

Day 6 of no power after Alfie blew thru. Only half completed my work (usu. 5h a fortnight) cobbled together with borrowed laptop and dodgy mobile reception, for deadline today. Treading on a pin sent me over the edge. #MECFS Some days I feel bearable. This is not one of them.

Well this is fun. Partner doing last min. stuff at work, while I attempt to batten down at least some of the fly-away hatches #MECFS Legs are whingeing now, but this is nothing to what pain coastal towns will experience in a day or so. Good luck NSW/QLD. And yes, good luck Lismore ❤️ #CycloneAlfred

Australia is developing new ME/CFS guidelines--a long-sought goal of patient advocates. A survey seeks input to help develop the guidelines: virology.ws/2025/03/03/t...

5 week break unable to get 7mg *Nicotinell. Doc gave me script for 14mg - I was reluctant to cut them till I'd done a bit of research. Turns out u can, & I do, cut *Nicotinell only. 4 weeks back on, and I almost feel human. Don't wanna stop, but feel I should give those receptors a break.?? #MECFS

It took 21 months... but we made it! Real data on Low-Dose Nicotine patches for #LongCovid and #MECFS is finally out! 🥳🥳🥳🥳🥳 I am proud to say that the first low-dose nicotine patch survey (n=231) has been published as part of a collaboration led by Dr Leitzke 👀👀👀👇⬇️ rdcu.be/ebsNX

I've been thinking about how to explain the challenge of living with ME/CFS and created this cartoon visualization. Imagine the life of someone without ME is a rainbow of activities that each take a certain amount of energy. ME limits your energy, and thereby the vibrancy of your life.

“We’re trialing a low dose of Rapamycin once a week… which may have an immune-supporting effect,” Dr. Proal explained last week via the CoRE clinic. There are a couple studies that show this low dose could improve signalling of interferons… used to control viral infections.”

@resiapretorius.bsky.social, Huihui Zhao and I have an important preprint out showing how fibrinaloid microclots equate to the #TCM concept of 'blood stasis' . #XueFuZhuYu can alleviate it (and several #pwLC & #pwME correspondents are already benefiting). preprints.org/manuscript/2... #TeamClots.

If you don’t have #MECFS or #LongCovid you might not understand how exciting this is. It is so rare to find accurate info on these illnesses for the general public. This will be a great basic primer on ME for friends and family.

Save the date for Australia’s Long COVID Awareness Week! 📅 From 10-15 March 2025, join Emerge Australia and be part of the national & online movement to raise awareness about Long COVID. More details coming soon!

Dr. Amy Proal, Scientific Director of the CoRE Clinic at Mount Sinai, discusses viral persistence as a driver of ME/CFS with Dr.s Raven Baxter & David Putrino: “[research] finds the RNA backbone & protein of enteroviruses in ME/CFS gut tissue.” @coresinai.bsky.social