Could COVID-19 be the best thing to ever happen to ME/CFS?
The COVID-19 pandemic is squeezing our medical systems, whacking our economy, testing our leadership and our resources but at the bottom of it COVID-19 is one thing – it’s severe infection – and we know the role severe infections play in ME/CFS/FM – they often trigger it.
Studies indicate that past SARS outbreaks also triggered ME/CFS/FM-like illnesses in people who’d been infected. With millions likely to come down with COVID-19 the opportunity exists to get at the source of post-infectious illnesses like ME/CFS/FM once and for all.
Find out more in this Simmaron Research Foundation sponsored blog:
The Coronavirus Series From Health Rising
- Coronavirus #I: Dark Sun: Reflections on the Coronavirus as it Heads For Town
- Coronavirus #2: Scary Models, 8 Reasons People with ME/CFS and Fibromyalgia Should Be Careful, How to Stop an Epidemic, Why You Should Trust No One and More
- Coronavirus #3: Is the U.S. Becoming Italy? A Singapore Success Story, More Scary Models, Remdesivir to the Rescue?
- Coronavirus #4: Lipkin Gets Hit, Testing Woes, Could the Models Be Wrong, Ikea Ventilators?, and What’s Next (???)
- Coronavirus #5: Lipkin, Bateman and Klimas Talk Plus Treatment Updates
- Coronavirus #6: Will COVID-19 Leave An Explosion of ME/CFS Cases in its Wake?
- Coronavirus #7: Records Broken, An ICU Doctor Talks, The Peak is Coming, Hot Spots, Is it in the Air? Dr. Hyams on COVID-19
- Coronavirus #8: The Grand Experiment, Starting Up? Social Distancing – For 2 Years? WHO Did It?
Cort – I had the flu in the end of 2017. I had a relapse of ME for most of 2018. I am not surprised to hear COVID-19 will be causing many more people to suffer with this dreadful disease. When I read Tom Hanks say he had the blahs and needed to nap after doing laundry or dishes, I thought it sounded just like me!
Well there’s evidence that more virulent infections have a greater chance of leading to CFS, so it might happen.
I seriously would like chloroquinine looked at for CFS. It has antiviral, immunomodulatory and anti-autoimmune properties. Cort, with your contacts it would be good to see what experts think.
High fever is the common symptom that can lead to ME/CFS/POTS. So it doesn’t matter what kind of infection you have had.
The studies suggest that it doesn’t. Whether viral or bacterial it doesn’t matter. EBV, Coxsackie B, Ross River Virus, SARS, giardia – the bug doesn’t matter – the severity of the infection does. Of course, many people have their illness triggered by an undiagnosed infection such as common cold virus (such as a coronavirus) or a flu virus; it doesn’t have to be a well-known infection.
I got ME/CFS with out any viral episode that I can remember (although I’d already been diagnosed with narcolepsy by the time ME/CFS came into the picture, so my memory is questionable). I think it came on gradually, over several years. I was formally diagnosed in 2017, and although I had dysautonomia symptoms then (gastroparesis, temperature dysregulation, neurally-mediated hypotension), full-blown POTS didn’t come along until February 2020. It came on suddenly, after a slow walk, and I’ve been 95% couch bound since. So who knows…
Interested in how “cytokine storms” as per the following NPR commentary may factor in to all this.
https://www.npr.org/2020/04/09/831257636/the-7-day-covid-19-crash
My Wife and I both tested positive for Coronavirus and have both subsequently tested negative and we are both still unwell. It is 6 weeks since our first symptoms and we are both still fatigued, dizzy, and have exercise intolerance. I have a near constant sore throat and my wife has significant gut issues. Neither of us to date have ME/CFS but we know about the illness because our son suffered from POTS for a number of years (discusses on this website) and, very thankfully, he recovered. We live in a hotspot for the virus and personally know 10 people who are a month in post virus and are all unwell with intermittent fever, sore throat, fatigue etc. The NY times ran an article discussing it https://www.nytimes.com/2020/04/13/opinion/coronavirus-recovery.html Most people still think they have the virus, but after our experiences with our son, we suspect what the readers on this site already know, we probably all have post-viral fatigue and some of us will heal over the next weeks and months and many of us will be less fortunate and enter the extraordinarily difficult wold of ME/CFS. Thanks to Cort’s work and the participants of this community, we have a plan to put the odds in our favor. We are not in denial, we have a goal and sub-goals, we are pacing ourselves and we are carefully watching our nutrition. We of course welcome other suggestions. Best wishes to everyone.
Thanks so much for letting us know Eric, We should note that this is a pretty darn fit family! It does, though, have as Eric noted, a POTS history. Let’s hope that you guys slowly improve as you hopefully will given that you know the drill = rest, take it easy and don’t push too hard…Good luck!
Their son’s recovery story is fascinating indeed.
https://www.healthrising.org/blog/2016/08/23/iron-man-young-persons-pots-mecfs-recovery-story-pt/
I believe I had corona virus in late Feb early March. Could not get officially tested. And by the time this all really started to get revel up it was nearly impossible to get tested. That’s when hindsight became 20/20 and I realized I was probably already infected. I live alone so I sheltered in place for 8 weeks. I had a raging fever for 2 days followed by weeks of a very dry insistent cough. And headaches extreme fatigue. Still have extreme fatigue, and when I say extreme I mean EXTREME! I can only stay up a couple to three hours at a time without needing a nap even if it is only a half hour nap. And I sleep about 16 hours a day!! The fatigue is different then any other fatigue I’ve ever had. I cannot move from point a to point b even if just a few feet without being out of breath and exhausted. I had to sleep after going food shopping and getting an order in. I came home and collapsed in bed without getting the food put away. I can’t shower without extreme fatigue cook a meal. I can’t do much of anything. Waiting now to see if I can get the antibody test anywhere.
Thanks for relaying that Shelley – and good luck! Hopefully you just need more rest.