I've been meaning to put this post together for two weeks, but I haven't been feeling well. As I explained in my Weekly Inspiration post, we're playing the guessing game--with a new, scary twist--with my recent downturn: allergies messing with immune system? changes in Lyme treatment/Herxing? exposure to COVID-19?? Hard to say. Most days, I feel fine, just not quite up to my usual "normal"--a bit achy and low stamina (I can normally be quite active now without crashing; not so much lately). And every 3-5 days, I have a major crash day, with severe aches and exhaustion, which is normally very rare for me now. I rest a day and am back to "fine but not at my normal baseline." Otherwise, we are all managing well and handling the stay-at-home orders pretty easily. As for many of us, this isn't all that different than my normal life, just no doctor's appointments and far fewer errands. Since I haven't had my usual stamina, the downtime has been good for me, and I am trying hard to listen to my body.
But, enough about me! I know all of us with ME/CFS still have plenty of questions--all the stuff regular people are wondering, plus much more! So, here I have collected a bunch of useful information, articles, videos, and other resources from the top experts in ME/CFS.
First, my own earlier post on Coronavirus and ME/CFS explains the specific ways that our immune systems are dysfunctional and how the virus might affect us, with some suggestions for ways to improve your immune system now and extra treatments to try if you are exposed. We've been doing all of these things here at our house! If I was only able to do one thing right now, my choice would be to begin taking inosine (also sold as Imunovir), which is super-cheap, readily available, and very effective at improving the immune system (thus, improving all ME/CFS symptoms), reducing exercise intolerance, AND it also acts as an anti-viral. For more information, see Imunovir and Inosine for Treating ME/CFS.
Dr. Nancy Klimas's excellent video on Coronavirus (COVID-19) and ME/CFS includes lots of great information for patients:
Most of what she recommends has been covered previously here on the blog, so for details refer to my posts on:
- Methylation Cycle: Essential to ME/CFS (covers B12, folate, and more)
- Additional details on Vitamin B12 and ME/CFS
- Increasing Glutathione in ME/CFS and Related Illnesses (includes NAC, glutathione, and more)
- Treating Immune System Dysfunction (including use of Imunovir/inosine and other inexpensive treatments)
- Plus, additional details, including dosing (very important) on Imunovir and Inosine for Treating ME/CFS
ME International Blogs (from the UK) provides a good collection of information on Coronavirus (COVID-19) and ME, including basic tips on sanitation, symptoms, and more, plus a minute-by-minute summary of Dr. Klimas' video (above).
Finally, as always, Cort Johnson's blog HealthRising (Cort is an ME/CFS patient and an excellent journalist) is providing outstanding coverage of the coronavirus crisis, as it happens, with a specific focus on how it affects (or could affect) those with ME/CFS. Cort's research and reporting are always thorough and easy to understand. Here's most of his series on the virus (keeping in mind that he reported as news and studies became available, so some information changed over time):
- Part 2: Scary Models, 8 Reasons Why People with ME/CFS and Fibromyalgia Should Be Careful, How to Stop an Epidemic, Why You Should Trust No One, and More (March 15)
- Part 3: Is the US Becoming Italy?, A Singapore Success Story, More Scary Models, Remdesivir to the Rescue? (March 18)
- Part 4: Lipkin Gets Hit, Testing Woes, Could the Models Be Wrong? IKEA ventilators?, and What's Next (???) (March 25)
- Part 5: Lipkin, Bateman, and Klimas Talk Plus Treatment Updates (March 29) - also includes a link to answers about the stimulus checks for those on disability or not working, plus excellent videos, updates on possible treatments, and information from some top ME/CFS experts.
- Part 6: Will COVID-19 Leave an Explosion of ME/CFS in its Wake? (April 2) - this is a fascinating question that has occurred to me, too. Since a wide variety of infectious agents are known to trigger ME/CFS to start in about 10% of people, then why not coronavirus, too?
- Part 7: Records Broken, an ICU Doctor Talks, the Peak is Coming, Hot Spots, Is It in the Air?, Dr. Hyams on COVID-19 (April 6)
If, on the other hand, you have information overload and need to STOP reading about coronavirus to reduce anxiety levels, then check out these two recent Weekly Inspiration posts: Coping in a Crisis and You're Right Where You Need to Be for lots of ideas for relaxing, de-stressing, and taking care of yourself.