Narelle G
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rellieg.bsky.social
Narelle G
@rellieg.bsky.social
71 followers 180 following 48 posts
Interested in Dysautonomia, POTS, Aneurysms, Post Thrombotic Syndrome, Patient and client advocacy/consultation, 🧬
Posts Replies Media Videos
Reposted by Narelle G
buonsenso.bsky.social
“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...
“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.
danilobuonsenso.substack.com
October 19, 2025 at 1:50 PM
Reposted by Narelle G
thecovidinfoguy.bsky.social
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...
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.
September 12, 2025 at 6:04 AM
Reposted by Narelle G
drinfosec.bsky.social
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...
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,
September 10, 2025 at 1:58 PM
Reposted by Narelle G
angierasmussen.bsky.social
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...
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.
theconversation.com
September 5, 2025 at 7:25 PM
Reposted by Narelle G
adelaidehillslife.bsky.social
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. 😷😷😷
August 18, 2025 at 3:42 AM
Reposted by Narelle G
davidjoffe64.bsky.social
Translation:

How not to be a minimising dick‼️

www.mdpi.com/1660-4601/22...
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...
www.mdpi.com
February 14, 2025 at 2:21 AM
Reposted by Narelle G
dr-kevinlee.com
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
emergeaustralia.bsky.social Emerge Australia @emergeaustralia.bsky.social · Feb 11
Australian ME/CFS organisations adopt Election Commitments for the sector. This gives a coordinated message for advocacy efforts and lobbying. Learn more: https://vist.ly/3murk57

February 11, 2025 at 11:23 PM
Reposted by Narelle G
ryanlcooper.com
Tesla sales are down 41 percent in Germany, *63 percent* in France.

LOL

www.bloomberg.com/news/article...
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.
www.bloomberg.com
February 4, 2025 at 2:24 AM
rellieg.bsky.social
Such a fantastic comprehensive resource!
drbelkr.bsky.social Dr. Bel @drbelkr.bsky.social · Jan 28
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
February 1, 2025 at 5:07 AM
Reposted by Narelle G
drbelkr.bsky.social
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
January 28, 2025 at 2:26 AM
Reposted by Narelle G
davidjoffe64.bsky.social
🧠 Daily Feed of Brain Damage🧠

Cövid is a brain injury...

Full Stop...

New paragraph.

👇🏻👇🏻👇🏻

doi.org/10.1038/s415...
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
doi.org
January 29, 2025 at 4:19 AM
Reposted by Narelle G
njbbari3.bsky.social
#NSWHealth why haven’t you fixed this already?
January 11, 2025 at 3:30 AM
Reposted by Narelle G
chantzy.bsky.social
If you're downplaying the #H5N1 fatality because the patient had underlying conditions, consider that you too probably also have underlying immune system impairment from repeat SARS-CoV-2 infections
January 7, 2025 at 1:11 AM
Reposted by Narelle G
me-cfs.bsky.social
Excellent study by Hunt and Blease calling out the unethical gaslighting present in CBT for ME/CFS and “medically unexplained symptoms”.

jme.bmj.com/content/earl...
Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and ‘medically unexplained ...
Following years of debate over the effectiveness of cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), public health bodies in the UK and beyond have determ...
jme.bmj.com
January 2, 2025 at 10:17 AM
Reposted by Narelle G
angierasmussen.bsky.social
Because whatever you think about pandemic origins, it's one of many issues in which public sentiment & misunderstanding of how the scientific method works is being weaponized against scientists & pandemic research in general.

And if the end result is this, we are all in very serious trouble.
As for the future, Van Kerkhove warns that the world is dropping its guard against novel pathogens. Infectious disease is “not a safe space to really be working in,” she told Science. “Labs have been threatened. People have been threatened. Governments don’t necessarily want to be the ones to say, ‘Hey, we found something new.’”
January 3, 2025 at 12:53 AM
Reposted by Narelle G
broadwaybabyto.bsky.social
It’s 2025… can we start masking in hospitals this year?

Can we stop insinuating that hospital acquired covid is “inevitable” or that those who die were going to “die anyways”?

Can we call it what it is? An epic failure of infection control to protect those who put their lives in your hands:
A Plea to Maskless Healthcare Workers from Vulnerable Patients
If you see a mask - wear a mask. Better yet - wear a mask all the time and show us you understand that we're still IN a pandemic. We are depending on you to keep us safe - please don't betray that.
www.disabledginger.com
January 2, 2025 at 11:21 PM
Reposted by Narelle G
david.gardiner.net.au
Something familiar about that guy 😀
dddbrisbane.bsky.social DDD Brisbane @dddbrisbane.bsky.social · Dec 7
10 tips and tricks for GitHub Actions and Azure DevOps
David Gardiner
December 7, 2024 at 10:02 AM
Reposted by Narelle G
dddbrisbane.bsky.social
10 tips and tricks for GitHub Actions and Azure DevOps
David Gardiner
December 7, 2024 at 5:34 AM
Reposted by Narelle G
dr-kevinlee.com
Remember looking at arterial BP can be deceptive- if there is reduced venous return there can be significant reduction in brain perfusion and cardiac output. Just by looking at BP may not appreciate this eg in #POTS #MECFS www.ahajournals.org/doi/10.1161/...
The image illustrates the physiological responses to lower body negative pressure (LBNP) with decreasing venous return. It highlights percentage changes in three parameters: Mean Arterial Pressure (MAP): Remains relatively stable, showing minimal change. Cerebral Blood Flow (CBF): Decreases progressively, measured using MRI. Cardiac Output (CO): Drops significantly with increasing negative pressure, reflecting reduced venous return and overall circulation.
December 3, 2024 at 12:13 PM
Reposted by Narelle G
janebassham.bsky.social
John Chalmers Oration by Prof Georgina Long. From Dad’s advice to banish that which is unhelpful to the ‘forgetorry’ to ‘failure is a badge of honour because you’ve tried’: mindsets to move forward. +ve impacts, brain cancer treatment with ‘peloton’ research team. Power of courage, hope & science.
November 25, 2024 at 1:16 PM
Reposted by Narelle G
drnicktalley.bsky.social
Multidisciplinary care for complex gastrointestinal disorders. Improves outcomes and patients lives. We need to deliver this care in major public hospitals.

pubmed.ncbi.nlm.nih.gov/39582157/
Disorders of gut-brain interaction, eating disorders and gastroparesis: a call for coordinated care and guidelines on nutrition support - PubMed
Disorders of gut-brain interaction, eating disorders and gastroparesis: a call for coordinated care and guidelines on nutrition support
pubmed.ncbi.nlm.nih.gov
November 26, 2024 at 1:39 AM
Reposted by Narelle G
danharris.dev
Andrew Best & @david.gardiner.net.au running their pre-fringe act @ #DDDadelaide
November 23, 2024 at 6:18 AM
Reposted by Narelle G
janebassham.bsky.social
I’m doing The School for Change Agents’ new, refreshed version which is virtual, free, open to everyone & benefits individuals & their organisations.
A community of learners further developing skills2make a +ive difference in the world: lnkd.in/etM26psc #S4CA. NHS Horizons
horizonsnhs.com/school/
The School for Change Agents
The School for Change AgentsA free, online, self-paced course designed for health and care staff at any level to build the confidence, knowledge & skills to unleash your inner change agent! The…
horizonsnhs.com
November 19, 2024 at 5:57 AM
Reposted by Narelle G
liangrhea.bsky.social
I like this new @NHS_Lothian formulation of informed consent in pregnancy from Dr Geeta Kumar. I reckon it would apply more widely. Think 'BRAIN'- Benefits, Risks, Alternatives, I (what is important to ME), and what happens if I do Nothing? #RCOG2024
October 16, 2024 at 6:22 AM