Solve ME @solveme.bsky.social announced the release of a new community developed resource guide for Infection-Associated Chronic Conditions (for example, Long Covid, ME/CFS, POTS, and other chronic conditions).
solvecfs.org/the-infectio...
solvecfs.org/wp-content/u...
#MEcfs #LongCovid
Learning to live with PEM means unlearning common “life lessons”.
For pwME it’s completely okay to start a task and quit when it becomes too hard. In fact, quitting when it’s too hard is what you SHOULD do, lest it worsen your illness.
Far From Rare: A Common Disease Hidden in Plain SightA busy city street filled with vibrant, detailed figures engaged in daily activities, while a few individuals appear semi-transparent or fading into the background. These ghostly figures symbolize the invisibility of people with ME/CFS Why ME/CFS Needs to be Recognized Now February often brings conversations about rare diseases—conditions affecting fewer than 200,000 people in the U.S. ME/CFS doesn’t fit that definition. Yet, we chose to highlight it during Rare Disease Month not because it is rare, but because it remains rarely acknowledged, underserved, and underfunded in both the medical and research communities. With an estimated 5 to 9 million people affected in the U.S. alone—and many more meeting diagnostic criteria following COVID-19—ME/CFS is far from uncommon. The real challenge isn’t how many people have it, but how often it is misunderstood, overlooked, and left out of mainstream medical care. Image of lots of people standing in a city street
🧵
"Far From Rare: A Common Disease Hidden in Plain Sight: Why ME/CFS Needs to be Recognized Now"
batemanhornecenter.org/a-common-dis...
Comment: While there is possibly nothing new here for many of us, I think it does summarise a lot of the important issues in the field
#MEcfs #CFS
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Colour photo of a temple/monastery in winter. The building is relatively modern, of sand stone block construction and follows the classic form of having a raised covered watchtower, also made of stone. A winter storm is blowing through, there's deep snow on the ground and weak sunlight is just illuminating the temple, which is otherwise a little hidden by the snowy and foggy conditions. There's find snow being blown like mist from the temple and watchtower, like prayers floating into the wind.
Photo from a while ago: temple/monastery, NW China
Sorry, I can't recall or find the name of this one.
#Photography
NHMRC is seeking input from the ME/CFS and long COVID communities as part of their development of new clinical guidelines.
Have your say: consultations.nhmrc.gov.au/clinical-pra...
Submissions close 27 April 2025. If you have any questions or need further information, email me_cfsnhmrc.gov.au
The story is actually pretty funny, an MP was trying to get a law passed which would require trans people to sue their partners and children as well, but instead the Supreme Court went ‘no that’s silly, and in fact they shouldn’t need to sue anyone’
You recovered from ME/CFS after five years? How?
Journal of Clinical Medicine Serum Spike Protein Persistence Post COVID Is Not Associated with ME/CFS — Fehrer et al. "The present study shows spike protein in serum up to 31 months after infection in a subset of PCS patients with fatigue and exertional intolerance, as well as in asymptomatic individuals. Neither an association with PCS symptoms nor with the severity of symptoms in the ME/CFS subgroup was found. Moreover, no link to markers of endothelial dysfunction, inflammation, or hypercoagulation was found."
Research from Germany:
Serum Spike Protein Persistence Post COVID Is Not Associated with ME/CFS
www.mdpi.com/2077-0383/14...
From latest Science for ME weekly update
#LongCovid #PASC
Learn about #mecfs starter kit:
8min SciShow video: www.youtube.com/watch?v=wxSw...
written definition: me-pedia.org/wiki/Myalgic...
an example of diagnostic criteria: me-pedia.org/wiki/Canadia...
27min scandal explainer video: www.youtube.com/watch?v=RiwX...
check out: @meactnet.bsky.social
Ro Magdan I met someone who thought the Lightning Process was good. She actually fainted after one session and broke her arm falling down the stairs, but it took her family a year to deprogram her with the help of her orthopaedic surgeon. It took her that long to acknowledge how distressing and hurtful this "treatment" was. She was so desperate to find a cure which I understand
Adverse reaction following the Lightning Process shared today on my FB page.
Because participants are programmed/hypnotised to say they are well and not mention symptoms & impairments, positive testimonials are very unreliable
www.facebook.com/TomKindlonME...
#MEcfs #CFS #PwME
Health Rising: 'The Immunome – Could an Immune Breakthrough Help Explain ME/CFS and Long COVID?'
'Topol said that this technique was perfect for deciphering mysterious, heterogeneous, immune-based diseases like ME/CFS, long COVID..'
www.healthrising.org/blog/2025/03...
Grateful to the researchers, scientists, doctors, healthcare workers, caregivers, etc, for their continuing work on Long Covid and ME/CFS around the world.
theredtreeandme.substack.com/p/we-shall-h...
#longcovid #mecfs
Smart! Hold onto that extra energy like a precious gem. Your body will use it to keep helping you get better.
I am in the third week of a severe ME/CFS crash. Worst I’ve ever experienced, usually they only last a day or two. Bedbound. Afraid and frustrated. I want nothing more than to get back to my mild-moderate baseline.
#MECFS #CFS
Low spoonie version of the PEM study of cerebrospinal fluid alterations in #MECFS
"Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened."
#Covid
www.theguardian.com/society/2025...
Join a revolutionary movement for ME/CFS & long COVID studies. Your participation can lead to better treatments & improved quality of life. Sign up now: https://www.emerge.org.au/ausme/ or visit www.ausmeregistry.org. Be part of change!
David Lynch spent the last portion of his life in isolation. He said it was due to being high-risk and unable to risk getting COVID.
He’s not the only person with disability or illness who’s been left behind.
Everywhere you go without an n95 is a place you’ve decided disabled people don’t belong.
A collection of 35 creatures, aligned in rows of five. The creatures were drawn traditionally with ink and then scanned. Pinkish-red accents and a tan background were added digitally.
weird wild ✶ 2020
Chronic illness warriors, you are still valuable even when you can’t get out of bed. Your value surpasses your productivity. Please stay with us and help us all work through this together.
#millionsmissing
#mecfs
#cfs
#chronicillness
OpenEvidence, a popular new AI tool for doctors, is spreading harmful misinformation about medical conditions like #MECFS
medium.com/@underwaterc...
Screenshot of a bar plot showing the number of publications per year for the search “chronic fatigue syndrome”. There has been a distinct rise since 2020.
Definitely feeling like I’m seeing more research on ME/CFS than ever before.
In 2024 there was an average of 56 papers published per month for “chronic fatigue syndrome” [based on PubMed].
In the two months of 2025 so far there have been 143, which is 71.5 per month.
It is a rare kind of wonder, reading words etched thousands of years ago and come to the realization they could be spoken today, unchanged.
Time fades, empires crumble, yet the featherless biped experience remains familiar, bridging the past and present in a single breath.
Please see a good Long Covid or ME/CFS aware doctor. Don’t push your fatigue limits, don’t do anything that makes your symptoms worse. I know it’s very hard but you are in a critical period for recovery.
this what i mean about being ahead of the curve. if 1 in 20 covid infections rly result in ME/CFS ???? like. a whole lot more people are about to discover the endless pit of guilt & grief i’ve been living in since i worked through a mono infection in 2018
🚨 If this pans out, it might be huge.
First ever confirmation of #longCOVID genetic associations.
#LongcovidPredisposition
precisionlife.com/news-and-eve...
Peach background. In black is copy that reads, "What is Unrefreshing Sleep?" Under that is white copy on a darker peach circular background that reads, "Dysregulated sleep: hard to fall asleep and/or stay asleep" Under that in blue copy over a green circular background it reads, "Wake up feeling tired or unwell" and the last "bullet point" is and white copy over the darker peach circular background, "Sleep that remains non-restorative". Next to the "bullet points" is a cartoon image of a person lying in bed. The view is from the ceiling looking down at them. There is a green pillow and blanket and the subject is in a blue pj top. There eyes are closed and their facial expressions shows frustration.
🌙 ME/CFS 101: What is Unrefreshing Sleep?
Sleep disturbances affect 90% of ME/CFS patients, with issues in sleep quality (light, restless, interrupted) & timing (delayed, irregular).
Dr. Bateman explains & offers tips: loom.ly/6Ss8msI
Stay tuned for more! 💬 #MECFS
Modern medicine and psychology has gotten to a point where many people with SMI can follow their dreams like being teachers or artists and that is such a precious thing
Right! You don’t realise how valuable good sleep is until you can’t access it 😰
