Nuwuzoho
@nuwuzoho.bsky.social
Former athlete taken down by covid
Here for research & discussion about #longcovid #POTS #MCAS and related conditions
Trying to work my way out of the pain cave
Here for research & discussion about #longcovid #POTS #MCAS and related conditions
Trying to work my way out of the pain cave
Pinned
Nuwuzoho
@nuwuzoho.bsky.social
· Nov 18
“If the map doesn’t match the ground, the map is wrong.”
If your treatment plan doesn’t actually help severe patients improve, your plan is wrong, not the patients.
#pwME #longcovid #mecfs
If your treatment plan doesn’t actually help severe patients improve, your plan is wrong, not the patients.
#pwME #longcovid #mecfs
Reposted by Nuwuzoho
My feed is increasingly looking like the pre-credit montage of headlines in a post apocalyptic action movie.
March 18, 2025 at 12:59 PM
My feed is increasingly looking like the pre-credit montage of headlines in a post apocalyptic action movie.
Reposted by Nuwuzoho
March 14, 2025 at 3:41 AM
As someone with long covid ~ 40% of medical providers I feel have been actively wanting to harm me due to stigma. Another 40% indifferent to my condition, 19% want to help if they could, but lack knowledge and won’t prescribe off-label to try to help. 1% at best knowledgeable and willing to help
March 4, 2025 at 12:37 PM
As someone with long covid ~ 40% of medical providers I feel have been actively wanting to harm me due to stigma. Another 40% indifferent to my condition, 19% want to help if they could, but lack knowledge and won’t prescribe off-label to try to help. 1% at best knowledgeable and willing to help
Reposted by Nuwuzoho
beautiful national parks to visit.
trains that get you to them.
biomedical research to treat my disease so I can go hiking.
trains that get you to them.
biomedical research to treat my disease so I can go hiking.
February 22, 2025 at 4:55 PM
beautiful national parks to visit.
trains that get you to them.
biomedical research to treat my disease so I can go hiking.
trains that get you to them.
biomedical research to treat my disease so I can go hiking.
Do animals get dysautonomia? Imagine being a giraffe with POTS, like jfc
February 5, 2025 at 6:37 PM
Do animals get dysautonomia? Imagine being a giraffe with POTS, like jfc
This is how I describe my long covid/ME pain to people: you know the feeling when you get a flu shot and that part of your arm feels heavy and weak for a while? Also, you know that hypoxic feeling when they put a tourniquet on your arm for a blood draw? Combine those, plus you’re being electrocuted
February 5, 2025 at 4:41 PM
This is how I describe my long covid/ME pain to people: you know the feeling when you get a flu shot and that part of your arm feels heavy and weak for a while? Also, you know that hypoxic feeling when they put a tourniquet on your arm for a blood draw? Combine those, plus you’re being electrocuted
Reposted by Nuwuzoho
Back in mid 2020 I offered to source and fund air filters for every classroom in our kids' schools.
The school told me that it would prevent the children from getting the essential infections they needed to catch as children.
That was the point at which I knew we were doomed.
The school told me that it would prevent the children from getting the essential infections they needed to catch as children.
That was the point at which I knew we were doomed.
December 30, 2024 at 11:29 AM
Back in mid 2020 I offered to source and fund air filters for every classroom in our kids' schools.
The school told me that it would prevent the children from getting the essential infections they needed to catch as children.
That was the point at which I knew we were doomed.
The school told me that it would prevent the children from getting the essential infections they needed to catch as children.
That was the point at which I knew we were doomed.
Dysautonomia is where immunology, cardiology and neurology meet, and as such as largely understudied and misunderstood. I would rank my providers so far on this subject:
1. Immunology
2.
3.
4. Cardiology
5.
6.
7.
….
….
99. Neurology
#pots #dysautonomia #longcovid #pwme
1. Immunology
2.
3.
4. Cardiology
5.
6.
7.
….
….
99. Neurology
#pots #dysautonomia #longcovid #pwme
December 18, 2024 at 1:06 PM
Dysautonomia is where immunology, cardiology and neurology meet, and as such as largely understudied and misunderstood. I would rank my providers so far on this subject:
1. Immunology
2.
3.
4. Cardiology
5.
6.
7.
….
….
99. Neurology
#pots #dysautonomia #longcovid #pwme
1. Immunology
2.
3.
4. Cardiology
5.
6.
7.
….
….
99. Neurology
#pots #dysautonomia #longcovid #pwme
What if the drones just dropped off a cure for long covid and then left
December 17, 2024 at 4:29 PM
What if the drones just dropped off a cure for long covid and then left
My opinion is they covid is a very dangerous virus. In 2020 more than a dozen colleagues of mine died from acute COVID. What did they have in common? Public facing roles where they were likely exposed to high viral loads despite PPE. That doesn’t happen with the flu, EBV etc.
December 17, 2024 at 12:53 AM
My opinion is they covid is a very dangerous virus. In 2020 more than a dozen colleagues of mine died from acute COVID. What did they have in common? Public facing roles where they were likely exposed to high viral loads despite PPE. That doesn’t happen with the flu, EBV etc.
Not United Healthcare suddenly cutting off my migraine and POTS medications 😵💫😣
December 12, 2024 at 3:27 PM
Not United Healthcare suddenly cutting off my migraine and POTS medications 😵💫😣
A year ago this weekend, I ran a half marathon with friends, and then we danced and partied all day and night.
This weekend I got my long-overdue rollater for when I go to medical appointments. Should have done this months ago.
Proud of my adaptability.
#pwME #longcovid #POTS
This weekend I got my long-overdue rollater for when I go to medical appointments. Should have done this months ago.
Proud of my adaptability.
#pwME #longcovid #POTS
December 6, 2024 at 6:00 PM
A year ago this weekend, I ran a half marathon with friends, and then we danced and partied all day and night.
This weekend I got my long-overdue rollater for when I go to medical appointments. Should have done this months ago.
Proud of my adaptability.
#pwME #longcovid #POTS
This weekend I got my long-overdue rollater for when I go to medical appointments. Should have done this months ago.
Proud of my adaptability.
#pwME #longcovid #POTS
Feeling demoralized after a neurologist appointment.
I still can’t comprehend how they don’t understand that ME is a neurological/immune disease, and they should take an interest in it.
But what else is new.
#pwME #longcovid #mecfs
I still can’t comprehend how they don’t understand that ME is a neurological/immune disease, and they should take an interest in it.
But what else is new.
#pwME #longcovid #mecfs
December 2, 2024 at 7:28 PM
Feeling demoralized after a neurologist appointment.
I still can’t comprehend how they don’t understand that ME is a neurological/immune disease, and they should take an interest in it.
But what else is new.
#pwME #longcovid #mecfs
I still can’t comprehend how they don’t understand that ME is a neurological/immune disease, and they should take an interest in it.
But what else is new.
#pwME #longcovid #mecfs
Reposted by Nuwuzoho
Stranger: It really pisses me off to see people still wearing masks
Me:
Me:
November 27, 2024 at 10:41 PM
Stranger: It really pisses me off to see people still wearing masks
Me:
Me:
Even if I found out that I was magically misdiagnosed and had something with a better prognosis, I would spend every last day of my life advocating for people with long covid and ME. I’ve seen enough.
#pwME #longcovid #mecfs
#pwME #longcovid #mecfs
November 26, 2024 at 10:54 PM
Even if I found out that I was magically misdiagnosed and had something with a better prognosis, I would spend every last day of my life advocating for people with long covid and ME. I’ve seen enough.
#pwME #longcovid #mecfs
#pwME #longcovid #mecfs
Oh, right it was the Covid restrictions, not the neuro vascular virus leaving people with compromised immune systems
November 26, 2024 at 8:24 PM
Oh, right it was the Covid restrictions, not the neuro vascular virus leaving people with compromised immune systems
Reposted by Nuwuzoho
If I was going to fake an illness I would choose something people believe exists 🙄
#fibromyalgia #chronicillness #spoonie #SpoonieLife #fibro
#fibromyalgia #chronicillness #spoonie #SpoonieLife #fibro
November 25, 2024 at 5:37 PM
If I was going to fake an illness I would choose something people believe exists 🙄
#fibromyalgia #chronicillness #spoonie #SpoonieLife #fibro
#fibromyalgia #chronicillness #spoonie #SpoonieLife #fibro
I’m thinking of my fellow severe long covid & ME patients today as the Thanksgiving holiday approaches.
Not only can most of us not enjoy the food and gatherings like we used to, but we know holiday travel will worsen covid spread, putting our lives more at risk.
#pwME #longcovid #mecfs
Not only can most of us not enjoy the food and gatherings like we used to, but we know holiday travel will worsen covid spread, putting our lives more at risk.
#pwME #longcovid #mecfs
November 26, 2024 at 4:33 PM
I’m thinking of my fellow severe long covid & ME patients today as the Thanksgiving holiday approaches.
Not only can most of us not enjoy the food and gatherings like we used to, but we know holiday travel will worsen covid spread, putting our lives more at risk.
#pwME #longcovid #mecfs
Not only can most of us not enjoy the food and gatherings like we used to, but we know holiday travel will worsen covid spread, putting our lives more at risk.
#pwME #longcovid #mecfs
Reposted by Nuwuzoho
Reposted by Nuwuzoho
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 12:42 PM
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
I feel like the treatment of ME/CFS patients for decades and now Long Covid patients should be considered a human rights violation @amnestyusa.bsky.social
November 19, 2024 at 4:34 PM
I feel like the treatment of ME/CFS patients for decades and now Long Covid patients should be considered a human rights violation @amnestyusa.bsky.social
“If the map doesn’t match the ground, the map is wrong.”
If your treatment plan doesn’t actually help severe patients improve, your plan is wrong, not the patients.
#pwME #longcovid #mecfs
If your treatment plan doesn’t actually help severe patients improve, your plan is wrong, not the patients.
#pwME #longcovid #mecfs
November 18, 2024 at 12:32 AM
“If the map doesn’t match the ground, the map is wrong.”
If your treatment plan doesn’t actually help severe patients improve, your plan is wrong, not the patients.
#pwME #longcovid #mecfs
If your treatment plan doesn’t actually help severe patients improve, your plan is wrong, not the patients.
#pwME #longcovid #mecfs
Did any other #pwME and #longcovid have their dreams change? At first I would still be healthy in my dreams, running and swimming. I don’t do that in my dreams anymore and it makes me sad.
November 17, 2024 at 11:06 PM
Did any other #pwME and #longcovid have their dreams change? At first I would still be healthy in my dreams, running and swimming. I don’t do that in my dreams anymore and it makes me sad.
I never know how to react when a friend says “I believe you” about my #longcovid symptoms. It feels as if I have just been hit by a truck and someone bends over my body and says “I wish I could help, I believe you”
Don’t get me wrong, I appreciate the support. Just a little jarring from my POV
Don’t get me wrong, I appreciate the support. Just a little jarring from my POV
November 17, 2024 at 7:16 AM
I never know how to react when a friend says “I believe you” about my #longcovid symptoms. It feels as if I have just been hit by a truck and someone bends over my body and says “I wish I could help, I believe you”
Don’t get me wrong, I appreciate the support. Just a little jarring from my POV
Don’t get me wrong, I appreciate the support. Just a little jarring from my POV
When my 97 year old grandmother was hospitalized after a fall which she sustained a brain bleed, she did gentle PT in the hospital. The PT didn’t harm her.
Those exercises would wreck me, as a former athlete with long covid.
My advice- don’t get covid.
Those exercises would wreck me, as a former athlete with long covid.
My advice- don’t get covid.
November 16, 2024 at 6:07 PM
When my 97 year old grandmother was hospitalized after a fall which she sustained a brain bleed, she did gentle PT in the hospital. The PT didn’t harm her.
Those exercises would wreck me, as a former athlete with long covid.
My advice- don’t get covid.
Those exercises would wreck me, as a former athlete with long covid.
My advice- don’t get covid.