COVID-19 Survivors and Post-Viral ME
I am helping moderate a support group for COVID-19 survivors, and every day I read stories of healthy people who got a mild case of COVID-19 and now describe symptoms "exactly like mine." We have almost 4,000 people in this support group and it keeps growing every day.
I have been distraught over it, even though I anticipated this happening from the beginning of COVID-19, because I am hyperaware of the possibility of developing ME/CFS after a viral infection. I am so sad that people could lose so much, as I did to ME/CFS, from a virus whose spread could've been more contained.
I have spent a lot of time in the course of my own illness wondering if my disability could have been prevented, and even discussed with the researchers at NIH. The answer for me is unclear. But in the case of these COVID cases, I am heartbroken because in the course of their illness in the future, will they always have a doubt in their mind -- if we had shut down sooner, if I had stayed home from work a week early, not gone to the grocery store that day -- would I not be disabled now?
Dr. Nath, the main doctor in charge of the ME/CFS study I participated in at National Institutes of Health (NIH) is quoted here, and it looks like my research team will be studying post-COVID patients now. I have hope in them that they will "believe" these patients' symptoms, and not dismiss them as anxiety, which I hear is happening ALL the time to these patients. I am not surprised; it happened to me, too. It happens so much, in fact, that my research team collected information on it as part of their research on ME/CFS. I told them about my experiences, like the time I was told to go ride a bike and maybe I would feel better because maybe this was just depression, from a high level specialist at a teaching hospital. I have hope that the research team I was with at NIH -- whom I spent cumulatively an entire month inpatient with -- that they will be able to make progress in the research. That it could one day in the future lead to treatment.
But, these things take TIME. And I fear that so many people who were previously healthy, just like I was before mono, will now face an uncertain future with ME/CFS. They don't have time to wait for a treatment.
I am scared for them. I try not to show it when I talk with them; I encourage them to rest as much as possible in the beginning and not to overdo it, I give gentle nudges where I can. But the truth behind my screen is that I am terrified for them.
The support group that Alison moderates did a survey of COVID-19 recovery rates and lingering symptoms of their members. It is very eye opening. See it