ptswithpower.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

Why are doctors seen as the experts in chronic conditions, and not the medical scientists who specialise in that condition? (or the patients who live it everyday?) [rant incoming - I can feel it 🔥] ⚡️ #mecfs #pwne

submitted 9 hours ago • 0 comments

" #LongCOVID and #MECFS advocates who organized a recent protest in Washington D.C. stated that the Trump Administration had a 'campaign of revenge against infectious disease, public health, and infection-associated chronic conditions' because of the COVID-19 pandemic."

submitted 10 hours ago • 0 comments

Doctor: How are you feeling, any problems? Me: Right as rain. Doctor into tape recorder: Patient claims to identify as a meteorological event. Possible dissociative episode, immediate psychiatric hold required. Confiscate umbrella. ⚡️ #neisvoid

submitted 8 days ago • 1 comment

If you could give your #ChronicIllness a different name, what would it be?

submitted 8 days ago • 2 comments

Don't beat yourself up if you can't be productive today, to rebel against societal pressures. (And maybe that in itself is productive.) #chronicillness #disability

submitted 14 days ago • 0 comments

Docs, Blaming your patient's symptoms purely on deconditioning is circular reasoning and a cop out. ie. "The patient can barely get out of bed because they're deconditioned. Why are they deconditioned? They can barely get out of bed." 🔁 What started the chain? ⚡️ #MedSky #ChronicIllness

submitted 14 days ago • 1 comment

submitted 15 days ago • 0 comments

I keep thinking I couldn't get more disillusioned with the world and then it just, like, happens. #NEISvoid

submitted 18 days ago • 0 comments

The symptoms I get straight after exertion are different depending on whether the exertion was physical or cognitive. Physical = battery acid Cognitive = brain poisoned They feel different to the stuck-in-bed sickness 24h after. Does this still sound like PEM / PENE? ⚡️ #pwME #pwLC #pem

submitted 22 days ago • 2 comments

Yes! I had doctors accuse me of thinking they were stupid. I had doctors say I was questioning their ability. I have a list of diagnosed conditions with little to no understanding about them. It was never just “anxiety” or “dehydration.” But so many doctors refuse to think “zebra.”

submitted 86 days ago • 0 comments

"It's very rare - you wouldn't have it." So tell me, Doctor, - How many rare conditions are there out there? - This year, how many patients will you see? - How many are likely to have any rare disease? - And how many are you likely to find? ⚡️ #medsky #neisvoid #raredisease #eds #mcas #pwme #pots

submitted 24 days ago • 1 comment

What does an #MCAS flare feel like for you?

submitted 24 days ago • 1 comment

I was recently in Perth, Australia, to see Alem Matthees, the patient who liberated the PACE data through a freedom-of-information request. Reanalyses showed the trial had null or negligable results. Here's an account of my visits two weeks ago with Alem: virology.ws/2025/04/14/t...

submitted 32 days ago • 4 comments

Docs, If your patient's tests came back normal, it doesn't mean their symptoms aren't real, or aren't as serious as they say. 📉 It means those were the wrong tests. 📈 (Ask more questions, do a bit of research -yes, even you professor 😉- then try again.) ⚡️ #medsky #chronicillness

submitted 33 days ago • 1 comment

Docs, Nothing on patient's scan ≠ "There's nothing wrong" Nothing on patient's scan = "We haven't found what's wrong" ⚡️ #medsky #chronicillness

submitted 34 days ago • 1 comment

When researchers publish lies, when doctors mistreat patients and when healthcare companies exploit them, when the people running the country break the very rules their country is built on - There must be a way to enforce the law for when the people with power break it. ⚡️ #humans>$ #ChronicIllness

submitted 34 days ago • 0 comments

Good column! I hope a lot of GPs read it. I highlighted it in this blog I just posted about O'Sullivan's work. virology.ws/2025/04/10/t...

submitted 36 days ago • 0 comments

#humans>$

submitted 34 days ago • 0 comments

#humans>$

submitted 34 days ago • 0 comments

#humans>$

submitted 34 days ago • 0 comments

"Sister of bedbound ME sufferer urges more funding" www.bbc.com/news/article... Sympathetic coverage of a tragic case of very severe ME. This was new to me: "a new tool called digiTherapix which can track and record a patient's movement in real time at home" #SevereME #MEcfs

submitted 35 days ago • 1 comment

Another great take on the new book by #suzanneosullivan which dangerously feeds into a dismissive narrative of complex illnesses such as #ME/CFS and #LongCovid Even a mention for @drelke.bsky.social and her excellent BMJ online review of the book. Thank tou @davetuller1.bsky.social #SpeirGorm

submitted 35 days ago • 1 comment

When you finally find a doctor who listens and treats you with respect, but then they ask about previous appointments, it's a real rock and a hard place situation. 🧵 #NEISvoid #eds #pots #mecfs

submitted 45 days ago • 2 comments

Anyone with #MCAS or #histamine intolerance find you have to be in the cold all the time because warm temperatures trigger a reaction? I'd love to hear about your experience of this.

submitted 46 days ago • 4 comments

I'm taking an RDO today (rostered day off, from life). Posting about it so that I remember and follow through. 😊 #NEISvoid

submitted 46 days ago • 0 comments