An excellent blog post! If we’re ever going to solve this ME/CFS illness, we need information gathering such as this. As implied, we need to keep pushing for more diagnostic information so as to better characterize this illness. Eventually, this will lead to a cure. I have no doubt about this – it’s just a matter of time.
The included video by Giles Meehan was also excellent, being very insightful.
But both Giles and Lisa bring up issues that I would really like to see explored more fully, since I feel they could give even deeper insight into ME/CFS. Here are some of those issues:
Immediate Proximity to the Ocean
Giles,in his video, mentioned that he always feels better very near the ocean. That happens to me, too. But Lisa wasn’t very clear on this. It would have been helpful if she asked ME/CFS sufferers if they felt better on the ocean (e.g., on a ocean fishing boat) or ocean shore.
Years ago, when my CFS symptoms were fairly severe, I was desperate for relief, so bought a small commercial air purifier with an ionizer (about $100). I set it next to my bed and ran it all night To my pleasant surprise, I felt much better in the morning! But then the following morning, I didn’t feel quite as good, and the effect disappeared after the 3rd or 4th day, even though the purifier was operating normally all those days. Perplexed, I swapped in a new carbon filter. The next day I again felt great, but again, the effect diminished over the next few days. I thought about using a new filter every night, but realized that would be very expensive. And that wouldn’t help during the daylight hours.
So, my conclusion was that the “something” in the air that was making me feel bad could be neutralized by an activated carbon filter. I wonder if Lisa has ever examined this? Has anyone else?
Weird 5pm effect
Some days I’m on my computer in the basement all afternoon (e.g., 2 pm to 6pm). Curiously, I’ve noticed a strange pattern where I get into a bout of yawing and lethargy, and it always seems to happen about 5 pm, for about a half-hour to an hour. At first I just ignored it, but then I began to wonder about why it happened then. It occurred to me that evening traffic peaks about then, and the sun shining on vehicle exhaust may activate these exhaust particles which then work their way down to my basement work area, and affect me when I breath them in.
Lisa’s research seems to imply that the toxin is some kind of particle, such as a mold spore, and that it can gather on a person’s clothes. If that’s truly the case, then we might be able to “see” it with a microscope. I have a 400x USB microscope that I use to research plant diseases, and it can resolve fungal structures down to about 3 microns (I post lots of these fungal photos on my plant disease website). So it would be helpful to know if this mysterious toxin is composed of particles that can be seen (over 3 microns in size).
Toxin Atomic Weight
Assuming this toxin is less than 3 microns in size, and hence can’t be seen by low-cost microscopes, has any research been done to detect other airborne particles? Specifically, I’m thinking of researchers who measure air pollution by devices called gas chromatographs. I believe these devices can measure and detect a whole range of airborne particulate matter. If that’s the case, it would be really interesting to tote one of these things around the country, comparing the airborne particulate matter in all the good and bad locations Lisa describes.
My Final Thoughts
As I thought about all that was said by Lisa and Giles, and combined it with my personal experience, I seem to be coming around to the belief that our ME/CFS symptoms are pretty much controlled by particles in the air that, while often benign, are activated by such things as sunlight, especially sunlight higher up in the atmosphere. Atmospheric turbulence, such as a windy day or an approaching storm, then brings more of these activated particles down to ground level where we breath them and feel bad. On the other hand, these activated particles can be deactivated by passing them over activated charcoal, or coming into contact with negative ions that are prevalent over ocean water (or large waterfalls, which also generate negative ions).