I made a new video about the status of my health. Iโm finally talking and walking!
And thank you to my friend @992tobias for letting me share his ME/CFS story, too.
https://t.co/FaTP3MJpG3
@moss_sphagnum I'm actually thinking that I might want to experiment with building a PC fan one - w/ Arctic P14 fans, IKEA Starkvind filters, and some dollar store foamcore/coroplast.
@OhCasavant@WorkSafeBC lol.. meanwhile @WorkSafeBC dismissed all my concerns back in 2021 about there being zero airborne transmission prevention measures at my previous high-traffic public workplace.
This might be a long thread so bear with me.
About 3 months ago I was diagnosed with POTS (postural orthostatic tachycardia syndrome) from long covid and I would like to share how difficult and frustrating it was to get diagnosed - every step of the way.
People ask me a lot what POTS feels like. They think because tachycardia is in the name that all I feel is a fast heart rate.
POTS is a lot more than that.
POTS is a disorder of the autonomic nervous system. The autonomic system is responsible for all involuntary bodily functions.
In patients with POTS, tachycardia is the tell tale symptom, but itโs far from the only one.
Patients with POTS often deal with low blood volume and circulation, this can lead to blood pooling in the lower extremities which leads to dizziness and fainting.
Blood pooling can also contribute to brain fog, which leads to difficulty concentrating, memory loss, and overall cognitive function.
POTS also affects the digestive system, leading to abdominal pain, nausea, changes in bowel habits such as decreased or increased gastric motility.
The ANS controls our bodies ability to regulate temperature so POTS patients often feel overly hot or overly cold, often we also have problems with sweating, whether itโs too much or too little.
Insomnia and non restorative sleep is very common in all POTS patients, leading to increased symptoms as well as crushing fatigue.
Often times in POTS our bodies dump adrenaline at random times, leading us to feel like we are having anxiety attacks even though we have nothing to be anxious about.
This is just a fraction of what POTS patients feel day in and day out.
Whatโs behind the post covid sickness surge? The vaccine? Immunity suppression? Long Covid? The answer is there is not one answer. Itโs complicated and we have to keep the conversation going. Dr. David Putrino, Dir. of Rehabilitation Innovation of Mt Sinai Health System joins me to discuss
You could hardly design a disease more perfectly suited to being neglected than #MECFS...
โ Take away the energy of sufferers to advocate or even communicate
โ Put them at risk of major & permanent deterioration if they even try
โ Don't quickly or obviously kill the victims, reducing the emotional response for fundraising from friends & family
โ Make clinical biomarkers hard to find, making it ripe for psycholigisation by academic grifters
โ Make it predominantly affect women, playing into historic medical sexism & disbelief
A piece de resistance ๐ค
I don't like the 'anxiety' framing here (or for COVID etc). It's also disrespectful to those who actually suffer from clinical anxiety.
Being strapped to train tracks & fearing an oncoming train is not 'train anxiety'.
https://t.co/uGGEwLFsED
Well this is concerning. ๐ฎโ๐จ๐
"Gas stoves in several #Vancouver, BC, homes have been found to produce the most toxic benzene emissions of 17 North American cities analyzed."
I'm going to ask City Staff & VCH why this is, and what can be done. #VanPoli
https://t.co/mJ2CzhRaUc
I've written many stories about the toxic drug crisis, & they were all tragic, but this one was the hardest. I knew Sidney & her family. What happened to her is so wrong. If you have a child in university or college, you should read this & push for change. https://t.co/RLURaGENk7
How are injured drivers supposed to access healthcare treatments when their healthcare providers struggle to get paid by @icbc?
The type of crap claimants face:
1/2
Welcome to #neurology ๐ง where the word "functional" infected how we practice, process and proceed...๐ซ
and where many thousands of patients with #Dysautonomia, #MECFS and now #LongCovid are misdiagnosed with "functional neurologic disorder" or "anxiety disorder" ๐
and are sent off to psychotherapy and/or physical therapy to think away their underlying neuroinflammation, autoimmunity and mitochondrial dysfunction. ๐
Alternatively, neurologists may tell the patient, "I believe you, you are very sick, but it's a software problem, not hardware" and then refer you to psychotherapy and/or physical therapy. ๐ง
This practice must stop! โ ๏ธ๐ซ
Psychotherapy and/or physical therapy are ADJUNCT treatment options: not the main course. ๐ฝ๏ธ
The only way forward is to develop new and repurposed therapies to address neuroinflammation, autoimmunity and mitochondrial dysfunction. ๐งฌ๐
The end ๐ฉโ๐ฌ