Leonore

Welcome new followers 👋. Just a quick explanation. I started using lists because twitter randomly unfollowed people I definitely wanted to follow, so no harm meant in adding you. I do not add people to a list if they mention this in their profile.

Van de week zei de arts van het EMC niets meer voor me te kunnen betekenen. Twee dagen later belde hun apotheek dat ik mijn vloeibare medicatie voortaan in pilvorm krijg en er zelf drank van moet gaan maken, omdat het geld van de LC-poli op is. #LongcovidawarenessDay

The Dutch state has decided by fiat that expensive drugs cannot be researched for ME, because they would be too expensive to deploy if they turned out to be effective. So we are left to rot and die.

3/ Disappointing information about ME/CFS treatment trial fund in the Netherlands #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

2/ Disappointing information about ME/CFS treatment trial fund in the Netherlands #CVS #MECVS linkedin.com/posts/jdendunn…

🧵 Disappointing information about ME/CFS treatment trial fund in the Netherlands #MEcfs #PwME 1/

There is a profound lack of understanding about long Covid in primary care. While research for biomarkers and root cause treatments continue, we HAVE identified off label drug treatments that help with symptom management. Primary care needs to be aware of these treatments so they can recommend and prescribe them 1/

please help me sharing this, I need feedbacks on how to improve not only the content but also the care, & to understand if you like it and it’s worth going on every week. let’s target 100 likes to have the next one?

@loscharlos @BostonGlobe " ... some people are severely ill months later ... " TBH this is so wrong because I know people who caught Covid in the early part of 2020 and have never been well since. This "months later" business is seriously minimising what is a serious issue.

FOI response shows uptake of ME/CFS e-learning from the government delivery plan: • Intro: 371 • Community care: 101 • Severe ME: <50 From a workforce of ~188k doctors & ~423k nurses This is the problem when training is “promoted” and not mandatory. skyview.social/?url=https%3A%…

Reminding people of choline again. Most people don’t get enough in their diet (the main source is egg yolks). It’s crucial for making the neurotransmitter acetylcholine and for cell membrane health. It’s also linked to B12 metabolism.

1) Dr. Felipe Correa da Silva shared more info about the first 10 brain autopsies from the Netherlands. In this new thread, we made a brief summary of his presentation.

@Z3R0Gravitas thx, that was nice. i had missed the snowdrops

3/3+ Quick round-up of untagged January posts the crew may have missed: x.com/Z3R0Gravitas/s…

1/3 Telephoto #BirdWatching Part 3: - Blue tit (Eurasian), on a metal tree. - Robin (European), stumped, with me sat at end of garden. - Goldfinch (European), one of a bunch (see below)... DailyNaturePics 243

"Ellen de Visser (de Volkskrant) is verkozen tot Villamedia’s Journalist van het Jaar 2025. Het was een indrukwekkend stuk, mede omdat het zoveel extra inspanningen heeft gekost om deze groep samen in een groot stuk te beschrijven. #LongCovid #severeME villamedia.nl/artikel/is-vil…

To a very large degree (much more than most people expect), other people do not care about your health in the way that you must care about your health. What this means in practice for people with ME/CFS is that you will have to disappoint a lot of people. Many of them genuinely want to help, but they will still push “good advice” that can end up causing serious harm. The people offering that advice will not be there when you become more severe, and drink formula through a straw, they won't have to endure a dark room for decades. So, to the best of your ability, as soon as you can and as much as your environment allows for it, take full responsibility for yourself and listen to your body.

Another morning at my workplace at the gym and I am still trying to process yet another conversation I had today. A woman I know there has a 2 y/o son and is pregnant again, due in May 2026. Since February 2025 during the XEC wave, she, her 2 year old, and her husband have been sick almost nonstop. She spent that entire February and March coughing relentlessly and then had a miscarriage that doctors labeled “mysterious.” Around the 4th of July she described several “stomach bugs.” In September during XFG they had what she called a “cold.” November was “bronchitis.” December was the “flu.” This week she told me she had to rush her toddler to the ER for “croup.” He has now been diagnosed with reactive asthma and was prescribed steroids. She told me all of this casually... Like this is simply what motherhood is supposed to look like. That is the part that stopped me cold. She genuinely believes this is normal. She assumes every parent of young kids goes through constant viral infections, ER visits, steroids, and chronic respiratory issues. She does not know otherwise because she did not have a child before 2020. These young mothers have no reference point for what healthy early childhood used to be. They are being told that nonstop illness is expected. That pregnancy loss, immune dysfunction, and breathing problems are just part of raising children. This is the consequence of public health failure and the normalization of disinformation. When Covid is removed from the conversation, families are left believing immune damage is normal. It is not normal. Not even close to normal. And watching an entire generation be taught that this is fine, is one of the most disturbing things I have ever witnessed.

@froglet80 me

If you're scrolling the 'For You' feed and you see this post can you let me know please. Even if we're not following each other, I'm interested to know who the algorithm is showing me off to..

@AnilvanderZee Happy birthday Grigor. I can see clearly how much you both mean to each other. Lovely tribute.

Happy birthday to my best friend Grigor. The most cuddly, sweet, mischievous, laid-back yet bossy, lovey-dovey Velcro cat who makes my living hell with ME doable. To many more! 😻😻😻 #pwme #myalgicE #millionsmissing #severeME #abysinnian #abycat

We should never forget that all these horrific stories, all the suffering now coming out of dark rooms where people have been ill for years or decades with ME/CFS, are not 'new.' Can you imagine how many people ended up taking their own lives and died after years without compassion, help, or love with this disease over the last 100 years? Pre-internet? It's difficult to imagine. These people have always existed, in roughly the same proportion of the general population. ME/CFS, irrespective of what 'form' it is, or what causes it, or what damn name you give it, people with 'this' (again, in all its potential forms and variations) suffered alone. Back then, people were silent, isolated, and crushed by stigma. Today, they still are, but people are finally connected and are speaking up. This cannot be stopped anymore. All these morons were wrong. Doctors, family members, friends, strangers, politicians and yes, even the ignorant hairdresser telling you to find god to heal, it's really as simple as that. Patients were right. You did not make this up. You were not imagining it. Nobody (or at best very few!) ever did. What was dismissed as weakness and hysteria, or personal failure was and is a real disease. So if you do anything, do not give a jack shit about what anyone might think of you anymore. Speak up. Tell your story. Do everything you can to improve your own situation and if possible to fight for the cause safely.

“I burst into tears during a RECOVER-TLC meeting and quickly turned off my camera when a parent, suggested scheduling the study during summer break so it would not interfere with schoolwork. I sat there listening to my daughter moaning in pain from the simple act of shifting in bed; schoolwork had vanished from her world three years earlier.”

We urgently need to include severe Long COVID patients in research. They are already invisible to many, and sadly to research as well. Excluding them may cost us understanding the disease; they hold the answers to Long COVID. I wrote for @thesicktimes thesicktimes.org/2026/01/13/sev…