- Messages
- 51
- Location
- Allentown, Pennsylvania, USA
New study published April 17th, 2024.
Improvement of immune dysregulation in individuals with long COVID at 24-months following SARS-CoV-2 infection
Here's my immediate questions and serious concerns with this publication:
Why did they only study patients with "mild to moderate" Long COVID?
There are millions of us across the globe with severe Long COVID resulting in ME/CFS & dysautonomia (highly disabling conditions). 50% of LC patients meet the criteria for ME/CFS. We cannot stay out of bed. Study us.
And, if you must publish data on "Mild & Moderate" patients with just "occurrence of one of three major symptoms; fatigue, dyspnea, or chest pain" but not Post-Exertional Malaise or Dysautonomia, please update the title of your publication accordingly.
Those of us with ME/CFS have a measly 5% recover rate (decades of research). Sad to see no mention or consideration of the Moderate to Severe LC patient population.
Yet, an article essentially titled, "you'll get better with time." For half to more than half of us, this is simply NOT TRUE.
Yet another article telling me I'm disabled at 32 and the world is going to do nothing about it.
Improvement of immune dysregulation in individuals with long COVID at 24-months following SARS-CoV-2 infection
Here's my immediate questions and serious concerns with this publication:
Why did they only study patients with "mild to moderate" Long COVID?
There are millions of us across the globe with severe Long COVID resulting in ME/CFS & dysautonomia (highly disabling conditions). 50% of LC patients meet the criteria for ME/CFS. We cannot stay out of bed. Study us.
And, if you must publish data on "Mild & Moderate" patients with just "occurrence of one of three major symptoms; fatigue, dyspnea, or chest pain" but not Post-Exertional Malaise or Dysautonomia, please update the title of your publication accordingly.
Those of us with ME/CFS have a measly 5% recover rate (decades of research). Sad to see no mention or consideration of the Moderate to Severe LC patient population.
Yet, an article essentially titled, "you'll get better with time." For half to more than half of us, this is simply NOT TRUE.
Yet another article telling me I'm disabled at 32 and the world is going to do nothing about it.
