Narelle G

I hope @urethroplasty.bsky.social starts feeling better soon, with no further complications. An awful experience for both of you 😢

“We Can’t Do This Alone”: A Doctor’s Plea for Support in Caring for Long COVID and ME/CFS Patients As a pediatrician and infectious disease specialist, my days are full.

“We Can’t Do This Alone”: A Doctor’s Plea for Support in Caring for Long COVID and ME/CFS Patients

danilobuonsenso.substack.com/p/we-cant-do...

Awesome work!

I want to apologize Advocacy I'm a doctor. I have been a doctor for 20 years. I have diagnosed and done my best to help patients with ME/CFS, long COVID, other chronic diseases ignored by medicine. But I have also wondered if patients are exaggerating, malingering, or blamed something else. I can't even know how many patients I have missed screening for ME/CFS or if I have recommended exercise to someone suffering from PEM because it wasn't always on my radar. I have made mistakes and I'm sure misdiagnosed, under diagnosed, judged and tired of the frequent visits that left me feeling helpless. Over 20 years of medicine, I learned to listen and trust the patient. For years I have trusted that they know their body best. For this, I am am proud. I have developed the ability to advocate and stand up for these patients. I have always had a soft spot for the underdogs in society. Something I learned from my mom. And then I developed long COVID with dysautonomia and ME/CFS with PEM. I gaslit myself, pushed myself, gave myself the wrong advice when I couldn't find advice that helped elsewhere. I am a project in progress, I am human, and imperfect.

he reason I am posting this is due to a recent post by a colleague on a different platform who was expressing frustration about POTS. I have rarely seen a comments section fill up so fast. It was horrifying to read. The lack of empathy, the lack of desire to help these patients. They poked fun at patients, their appearance, their requests for help to apply for disability insurance when they looked well, their Google searches, their self-diagnosis, their TikTok research. There was little curiosity and so much judgement. I was embarrassed to be a part of this profession. I responded to many of the comments in an effort to educate until my brain fog set in and I couldn't anymore. Other doctors with POTS, ME/CFS, long COVID spoke up about the ignorance. Some doctors who don't suffer from any of this, but expressed immense empathy stood out to me, but there were so few of them. I responded to them, thanking them for validating patient with these illnesses with tears in my eyes. I apologize. I see you. I believe you. What you are experiencing is real. I will continue to advocate with the little bit of fight I have in me.

Please read this!

A doctor says sorry to Long COVID and ME/CFS patients—he truly didn’t understand until he got Long COVID himself.

"I gaslit myself, pushed myself, gave myself the wrong advice"

Source: www.reddit.com/r/covidlongh...

How to Love Someone With Long Covid (Even When It’s Hard) Let’s talk about something brutal. When you get sick and stay sick, people disappear. That’s not a flaw in your personality or your worth. That’s human behavior. Animal behavior, actually. Let me rewind. Decades ago, I dated someone I loved deeply. She had this deep belief, that if the passion fizzled, it was over. That was the whole rulebook for her: no fireworks, no future. And maybe when you’re young,

Here's the latest 🚨🧵 by @david.notesforfriends.com (w/ screenshot)

"How to Love Someone With Long Covid (Even When It’s Hard)
Let’s talk about something brutal.
When you get sick and stay sick..."

threadreaderapp.com/thread/19656...

As someone who is in the first stages of a laundry renovation, I’m admiring your impeccable carpentry skills and work ethic! Well done!!

How RFK Jr.’s misguided science on mRNA vaccines is shaping policy − a vaccine expert examines the false claims Chaos at the CDC and the sharp move away from mRNA vaccines has public health experts alarmed.

If you’re wondering how much of what RFK Jr said yesterday about vaccines was true—almost none of it was.

@FullerLab_UW is one of the most accomplished vaccinologists out there and her article is required reading to separate truth from falsehoods.

theconversation.com/how-rfk-jr-s...

Adelaide EDs are experiencing endless cycles of critical overcrowding, and yet no one at SA Health wants to address the elephant in the room... Airborne infection protections, like N95s. 😷😷😷

A great compost bin idea!

Hopefully they can unhook you outside soon and that you didn’t get too much exposure from the time you were in there 😬

Ugh! That’s so awful! What did you end up doing?

Great drawing!

Nice!

So sorry! I hope you’re able to regain control again. We appreciate your work!

No cooked breakfast photo yet? Don’t keep me guessing 😊

🤦‍♀️

Samesies here for some eye surgery. It didn’t count towards anything. Separately invoiced.
Similar thing for MRA and MRV a few years ago.

Not the most reassuring images to have in a waiting room! 😊😂

I feel your pain! feel your pain! One of my kids has been on something similarly priced, and another more modestly priced drop since they were 4 years old (now 22!)

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate med...

Translation:

How not to be a minimising dick‼️

www.mdpi.com/1660-4601/22...

It’s 2025, there really is no excuse to get blank looks from HCPs in Australia when #MyalgicEncephalomyelitis #MECFS is mentioned, policy makers should do more to ensure such given the health equity and access that pwME pwLC deserve

That’s so beautiful 🥰

Tesla Sales Plunge 63% in EU’s Second-Biggest EV Market Tesla Inc. registrations plummeted 63% last month in France, the European Union’s second-biggest market for battery-electric vehicles.

Tesla sales are down 41 percent in Germany, *63 percent* in France.

LOL

www.bloomberg.com/news/article...

Can relate! This has happened numerous times with specialists over the years, and complaints have resulted in no change in their policies.

Such a fantastic comprehensive resource!

Pg1 of my ME/CFS for health professionals pdf. Key points, educational videos, guidelines, appropriate diagnostic criteria (inc mandatory post-exertional malaise), clinician & patient resources.

✳️Full 7pg pdf available if you're interested.

#MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

So sorry! The medical admin tasks associated with chronic illness are challenging enough without additional stressors,

Thank-you so much! Very much appreciated 😊

Although I’m not a doctor, I would love to have access to this is possible! Several important people in my life are affected by ME/CFS.

Novel brain SPECT imaging unravels abnormal cerebral perfusion in patients with postural orthostatic tachycardia syndrome and cognitive dysfunction - Scientific Reports Scientific Reports - Novel brain SPECT imaging unravels abnormal cerebral perfusion in patients with postural orthostatic tachycardia syndrome and cognitive dysfunction

🧠 Daily Feed of Brain Damage🧠

Cövid is a brain injury...

Full Stop...

New paragraph.

👇🏻👇🏻👇🏻

doi.org/10.1038/s415...