A group of #severeME patients are trying to save Daryna, a young woman from #Ukraine with severe #MECFS, from the bombs & negligence. We want to take her as #refugee to #Germany. We find no help from anyone, including associations & NGO. Would you volunteer to help? Contact me. #pwME
06.01.2026 19:59 — 👍 18 🔁 20 💬 2 📌 0
Why RFK Jr is a menace to scientific research.
drrubin.substack.com/p/rfk-jrs-mr...
For those of you in the UK, Palantir are all over the NHS.
Questions have been raised about the transparency and fairness of the procurement process leading to the contract award.
The cost of the contract, £330 million, has also been questioned.
#Ableism & self-ableism are pervasive in our society & deeply ingrained in medicine and medical schools’ teachings Most doctors are not at fault, but victims themselves of it. This young MD who posted on Reddit about #MEcfs being the worst chronic disease, being one
www.reddit.com/r/mecfs/comm...
Pretty accurate representation of what my life is like.
#mecfs #myalgicencephalomyelitis
Latest View from the Trenches of #MyalgicEncephalomyelitis includes info about IV fluids for managing ME & news from UK & Australia.
open.substack.com/pub/colleens...
Photo of Canadian made WakeWater Electrolytes. Lemon Lime flavour.
The next #ME/CFSHacks #ME/CFS (mild/moderate) test I'm going to do is electrolytes again. Didn't give a good try before. Half at night, other half first thing after getting up. Purpose? To see if I wake up easier and feel less like a zombie the first 2 hrs. Right now, it is so hard to wake up.
02.08.2025 19:44 — 👍 3 🔁 1 💬 1 📌 0What frightens me is society sinking into antiscience.
02.08.2025 18:01 — 👍 7 🔁 4 💬 1 📌 0Nearly 200 children have died from Covid. It goes unmentioned when the government could have rolled out clean air. Had enough of politicians not wanting to say things plainly.
02.08.2025 19:41 — 👍 8 🔁 5 💬 0 📌 0Many don’t seem aware of the impact on vulnerable and long Covid sufferers who are well aware Covid is not over and the denialism on this is so harmful and is ripping families apart. Lies are harmful and the truth is published in a mountain of research.
02.08.2025 17:42 — 👍 72 🔁 15 💬 1 📌 0Vaccines are not enough to prevent long covid and most aren’t up to date with current strains. Our government are not following the science on layered mitigations because it’s not popular opinion. This is why we have millions with long covid. Zero decent public health messaging.
02.08.2025 17:46 — 👍 220 🔁 55 💬 4 📌 2
Contents How COVID and Long Covid Damage Lung Tissues, and a Drug to Reverse This Damage. . . . . . . . . . . . . . . . . . . . . . . . . 2 A Genetic Risk Score for ME/CFS. . . . . . 2 Solve M.E.’s Guide to Current Clinical Trials. . . . . . . . . . . . . . . . . . . . . . . . . 2 Endogenous Retrovirus Activation in ME/CFS, Fibromyalgia, and a Newly Discovered, Related Disease. . . . . . . . . . 3 Updating the Long Covid Research Index — Results from the RECOVERAdult Study. . . . . . . . . . . . . . . . . . . . . . . . . . 3 A Simple Hearing Test to Measure Cognitive Decline in People with Long Covid. . . . . . . . . . . . . . . . . . . . . . 4 Chronic Inflammation Raises IL-6 to Drive Neurobehavioral Symptoms via Dopamine Disruption. . . . . . . . . . . . . . 4 Register for Solve’s ADDRESS-LC Trial Webinar. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Solve ME/CFS Initiative Summer 2025 Chronicle
solvecfs.org/wp-content/u...
#LongCovid #MEcfs
tern @1goodtern Ok. This is a shit thread, and very depressing, so, yes, please, flick past it, or just block me. 8:27 AM · Aug 2, 2025
Very important thread. It is sad though. #covid #longcovid #children
@1goodtern.bsky.social
threadreaderapp.com/thread/19515...
COVID conscious people know what's going on.
2021
"Lewis Hamilton suspects he has long COVID-19 after dizzy symptoms at Hungarian GP"
2025
Hamilton calls himself "useless" and Ferrari should "change driver" after poor F1 Hungarian GP qualifying
www.autosport.com/f1/news/lewi...
1-hour recording from AfME’s Genetics Centre of Excellence webinar:
"Presentations from Audrey Ryback, Research Fellow at the University of Edinburgh (funded by Action for ME), and PrecisionLife, our Partners in the LOCOME research project."
www.youtube.com/watch?v=zhNt...
#MEcfs #CFS #PwME
"I brought notes, my smartwatch data, letters from my previous specialists, and a witness" oh you think I'm joking for the bit. Lmao I am not
#chronicillness #mecfs #cfs
This large UK study found 116 markers indicating biological differences between ppl with #mecfs and healthy controls. These differences were NOT affected by activity. Take that, graded exercise proponents!!
virology.ws/2025/06/23/t...
So thankful that I was limiting my errands to the max (Costco mostly once a month) and that others were mostly all wearing mask while I was wearing cloth ones.
By the time many took theirs off I had upgraded to n95 and now that none have them I use elastomeric and haven’t been sick for 5 years.
Immune damage in Long #Covid
#LongCovid
www.science.org/doi/10.1126/...
Covid 'brain fog' likely factor in train's near-miss
A locomotive engineer experiencing brain fog in the wake of a #Covid19 infection likely played a role in a KiwiRail coal train's near miss
#LongCovid #Sars2
www.1news.co.nz/2025/01/30/c...
COVID is not over, I got it like two weeks ago, it was awful and I'm still dealing with brain fog and congestion. many people can't afford to get it at all. we seriously need to fight against all anti-mask, COVID-denial rhetoric
29.06.2025 03:05 — 👍 41 🔁 18 💬 2 📌 0
Animal Source Most Likely Origin of SARS-CoV2 but Missing Chinese Data Leave Findings Inconclusive: WHO Expert Group
healthpolicy-watch.news/breaking-ani...
#Covid can harm your unborn baby.
ANYONE can get #LongCovid from ANY variant despite being vaccinated.
Becoming infected with #SARS-CoV2 is like playing Russian Roulette with your health and the health of your children.
Your best defense is wearing an N95 in public to prevent infection.
#Resist
Photo of Farage grinning as he reclines on leather seats in a Belgravia club Reform UK leader Nigel Farage in the bar of Boisdale of Belgravia, his unofficial office, last week SUNDAY TIMES PHOTOGRAPHER RICHARD POHLE Nigel Farage: If I can't give young men a voice, wait till what comes after me The Reform leader on his plan for taking power, starting by tearing down the parliamentary system
Nothing better sums up the threat to our democracy and country than this far right cosplaying champion of the working class lolling about in a Belgravia club and the Sunday Times giving him a megaphone to honk out his ruinous Trumpian populism to a public tired of govt failure (that he helped cause)
29.06.2025 07:52 — 👍 1712 🔁 556 💬 189 📌 58Mask up!
25.05.2025 04:26 — 👍 14 🔁 4 💬 0 📌 3
New kid on the block: NB.1.8.1
Professor Christine Pagel
#CovidIsNotOver #Covid19UK
#SummerWave #Variant
open.substack.com/pub/christin...
NB.1.8.1, a SARS-CoV-2 variant under monitoring (VUM) since 23 May with increasing proportions globally, derived from recombinant variant XDV.1.5.1, with the earliest sample collected on 22 Jan 25. NB.1.8.1 is one of 6 VUMs tracked
timesofindia.indiatimes.com/life-style/h...
📢 Online demonstration, day 3️⃣0️⃣0️⃣.
#CallForPublicHealthAction
Demonstrating outside the 🇸🇪 parliament alongside friends in 🇩🇪🇨🇦🇬🇧, for clean air, evidence-based infection control, public education on COVID-19, and care and biomedical research for Long COVID & ME.
@sverigesriksdag.bsky.social
#Maskup
25.05.2025 11:31 — 👍 3 🔁 3 💬 1 📌 0
Preliminary findings from Simmaron Research’s Rapamycin trial in ME/CFS
- result from the first 40 participants who completed 3 months on it
- improvements seen in *every*
symptom scoring scale
