seems very premature to call this a “breakthrough” or “the new ME/CFS blood test.” pwME are due more care than this

@bhanlon15.bsky.social, @tomkindlon.bsky.social, @betsyladyzhets.bsky.social

If it felt right sharing this article about a very severe #pwME in need, it would be very appreciated 🧡

you end your explanation by saying “does that make sense?” and feel self conscious about the note of pleading in your voice. you’ve been asking this question more often lately—perhaps a sign of cognitive decline. the worry barely registers. not like you can do anything about it.

every explanatory step you take is an act of faith. how to stay oriented when foresight and hindsight are impossible?

we’re both severe. our personal care assistants (paid for by the US government) handle household responsibilities and food prep as we’re too sick. we split household expenses and support each other practically and emotionally as much as we can.

For years, my friend has relentlessly pursued help from relevant medical/social programs in Poland with no notable successes. It’s all made very difficult because ME is not recognized in Poland.

I have a friend with very severe ME in a dire situation in Poland. He is entirely bedridden and functionally blind (he must wear an eye mask 24/7 due to light sensitivity.) On top of this, he is being horribly abused—physically, psychologically, and sexually—by his only caretaker (a family member).

and i want to read it 😬❤️‍🩹. the way people don’t want to hear anything bad about our specialists, you’d think all it took to be a good one is just believing ME is real. we deserve way more than just that—integrity, compassion, affordability vs extracting revenue from ppl likely to be struggling

…therefore, a modest positive trend on some surveys is not proof a drug def works for a subset of us

and it should be unsurprising that a drug doesn’t work given we still don’t know what the mechanism of ME is. these trials will remain extremely long shots in the dark until we do, unfortunately