Why CFS Is Not Psychogenic

CFS was once thought of as a psychogenic disorder. The evidence that it is biological disorder is mounting and nobody is calling that anymore these days. But I thought of it when I read the NYT article on the invisible attack on US diplomats in Cuba and China. It raised a possibility that what the US diplomats experienced was a mass hysteria. The similarity to the Incline Village outbreak and subsequent labeling of CFS as middle aged women's hysteria is rather striking: they are both highly clustered, had no known cause, and they could not be replicated. No wonder people not versed with CFS thought that it was a conditioned response to initial infection or chronic stress.

And here is why CFS is not psychogenic even without any biological evidence to such. Most patients, including myself, come into CFS without knowing what Post-Exertional Malaise is. People suspect that they have CFS when they are constantly tired. But the real CFS patients struggle for months with worsening of symptoms after exertion. Then, after searching for answers for another months,  they are either diagnosed or find out themselves that it is CFS. They initially suffer from PEM without knowing what it is.

But a trained response in hysteria requires knowing and learning. The noise from the upstairs neighbor, for instance, can immediately trigger violent outburst to someone who had to put up with the annoyance for some time. It seems automatic as if you don't have control, when in reality you can retrain yourself and detach the response from the stimuli. CBT is a useful tool for that.

PEM in CFS is not immediate; it is delayed like a clockwork by 24 hours, just as buboes break out 24 hours after contacting plague. (Funny that I tell CFS people to avoid exertion like a plague). And it happens the same even when you don't know anything about it, just as buboes break out whether you know anything about plague or not. Since psychosomatic response requires the learning, PEM can't be psychosomatic. By extention, CFS can't be.

Learning about your PEM, BTW, takes long time and hard work. Many times I expected PEM but it did not happen. Even more times I wasn't expecting and then hit by the bus when 24 hours rolled in. You have to take a meticulous log of what you do every day and then eventually learn to predict  which activities trigger PEM. Even now after 11 years, I can't reliable predict. I only know that faster speed and/or fewer breaks cause PEM in general.

Cat Test for CFS Severity

It was meant to be a 3 week sentence, but I managed to extend it into 5 weeks. 2 weeks into it, I went on another biking, for 3 miles this time. It was a trip normally well tolerated, but not while in a 3 week PEM. It reset the clock and 3 weeks penalty restarted all over again.

As if the PEM sentence wasn't enough, the homeless cat we've been taking care of has developed a terrible flea problem. It was getting warm and fleas must be hatching en masse. I had to buy Frontline Plus, a vacuum cleaner and a flea comb to combat the infestation.

The cat moves around. I have to get up, chase it down and then sit again to comb it. I was effectively doing several reps of squat. My legs turned into jello after a few days of that and I still had to vacuum the house twice a day.  By last night I was getting so desperate that while lying in bed I contemplated locking the cat out.

Then, right on cue, I got better today. It's been 3 weeks since the 3 mile biking and I must be out of the jail. Life seems brighter all of sudden.

So, you could use the cat as a test for the severity of your CFS sickness. If you can take care of your cat's flea problem in a small 1 br home with hardwood floor, then you likely have a mild/moderate case. If you can't, you have a severe or moderate case. I'm right on the border. When I'm having PEM, I'm back in severe/moderate condition. When I'm out of it, I'm a mildly sick, functioning patient.

Officially speaking, of course, you are a mild patient if you can hold a job, but have to spend all your evenings and weekends recuperating. And a severe case if you are constantly home/bed-bound. Moderate is anything in between.

Getting Fit Is Dangerous to CFS

No, I didn't get to make to the skiing #3. The mountains had plenty of snow -- snow pack was 150% of the normal when the storms were done -- but the resorts jacked up the price after the storms so I gave up on skiing for the rest of the season. But I did go on a bike ride. The weather finally broke on the last day of March and temperature went up to 75F. I took advantage of it and went for the next segment of the river trail.

The trail undulated more as it approached Folsom and I had to pedal harder than usual a few times. Yet, by the time I remembered to take break, I was already 3.5 miles along. I ended up doing 7.5 mile ride with only one break. It was meant to be 6 miles to Folsom Outlet Mall, but I missed the turn and went way past on Willow Creek trail.  The way back after a long rest in the mall was pretty much the same: I took only one break when I got near Nimbus fish hatchery. In all, I did 15 miles only with 3 breaks when it should've been 12 miles with 5 breaks.

The outcome was predictable. I wallowed in the "worsening of CFS", aka PEM, for almost 3 weeks. Taking 5000 steps in a day was a struggle and then I had to lay off the next day, when as I was able to take 6000 steps several days in a row just prior to the biking. The CFS limit is still alive and well.

It must've been the skiing. I was cramping all over after I was done, and doing it that twice in a month must've put me back in a shape, enough that I could pedal on without remembering to take the break when I was supposed to.

And that is the danger of getting fit. You get fatigued quickly enough after a half a mile walk or 1-2 mile biking, that you don't forget to stop and rest when you are out of shape. If you are in shape, on the other hand, it's easy to forget and go on past your limit. It's better to be out of shape or depressed when you are a CFS patient, as that will help you and prevent you from over-doing

Strangely enough, I did not pay the same huge price after the skiing #1. It was the hardest exercise to date and I was cramping and aching all  over when I was done. But I was back on my feet after my condition bounced up and down for a few days. I think that was because skiing forces you take frequent breaks: you have to sit on the lift for 5-10 minutes to get back up the slope after skiing down for one or two minutes. As hard as the skiing was, the forced break must've prevented me from crossing my CFS limit. Biking slow on flat terrain is a much milder exercise in comparison, but I did it without enough break. So I ended up crossing my limit and pay the price.

The "ordeal" bike trip did not cause 3 weeks of struggle either.  It was also the hardest exercise to date at the time, but I took millions of breaks on that trip.

Graphically, the safe vs dangerous exercise zone for CFS patients looks like this:

You can either do high intensity exercise for a very short period of time or do a very low intensity exercise for a longer time. Skiing down a short bunny slope is the former and slow walking or biking on flat terrain is the latter. Either one should incorporate enough rest before repeating. When you get fit, you end up doing safe exercise at a higher intensity or for a longer duration, ending up in the danger zone. When you are atrophied or depressed, you do the reverse and get back in the safe zone.

So, if you have a moderate/mild CFS, it may be safer to stay out of shape. If you get fit, you must become extra vigilant and disciplined to force yourself to take frequent breaks. It's no different to the situation that serverely ill patients are in. For them, no activity is safe at any speed and therefore they have to be disciplined to pace themselves.

Curcumin Doesn't Work

It's been almost 3 weeks since I returned from the 2nd skiing trip. And I have settled into the familiar one-day-up-one-day-down pattern once again. Carry 20 lbs laundry or walking to the coffee shop craps me out the next day and I can't do much other than minimal ADL or Web surfing on my phone lying on the couch. It may be that I'm still under the weather from the last skiing. 3 weeks in the penalty box should be over in a few days, so maybe there is a light at the end of the tunnel.

In any event, that means curcumin did not help. So I'm calling the curcumin trial a failure.

I'm still waiting for a break in the weather for my next skiing expedition. It did break last week  but no lift deal was available. So I'll have to catch the next break. The atmospheric river is running again and we'll be wet into the next week.

Skiing Aftermath, #2

There was no bouncing up and down this time. The elevation lasted 4 days and I held up remarkably steady.  After a day of rest I was on my bike pedaling 2 x 1.5 miles fast enough to slightly run out of breath at the end. Another day of rest, and I took care of 20 lbs laundry without struggling.  It sure felt like a recovery. So much so that I was imagining hiking up Angel Island and biking 20 miles.

Then the struggling followed. Walking 4 blocks to Starbucks was enough to bring about a nasty ache and fatigue the next day.  The struggle lasted for 5 days.

I will back to skiing next week  if I can find another $30 deal. This time I'll stick to 3x5 bunny runs and see if I get the elevation without the ensuing struggle. The weather may not cooperate though. The "atmospheric river" has stopped running, but they are still forecasting snow next week. This has been quite a wet season and the snow bases were over 10 feet before this storm. It must've been a delight to skiers. Me, I'm just delighted to be back on the slope.

Skiing #2

Soon after Colfax snow started to appear on the ground.  By the time I got to Kingvale, the walls on the sides of the road were 6 feet high and then turned into 10 feet in Soda Springs. The storm must've really dumped.

I woke up yesterday with ache from 2 x 50 m run I did three days before. It was the tail-end of a post-exertional malaise. But the lift ticket was already paid for, so I went on. And
my score this time: 5 bunny run; 2 x ( bunny + blue); 2 x (bunny + blue) + blue + 3 bunny run. 

It was about twice as much as I did the last time, and almost as much as I used to manage on the first day of the season when I was healthy. Yet I didn't cramp this time. And I stayed up all evening when I got back playing with the phone that arrived from a eBay dealer. Today I'm wallowing in a happy fatigue just as I should, unlike the last time when I was phlegmatic rather than wallowing. Don't know yet what coming days will bring. I think a funk will set it tomorrow when happy chemicals dissipate and then everything will be back to the routine after that. We'll see.

Curcumin Trial

I bought curcumin phytosome from Amazon and started on it a few days ago. This is the same brand used in the CFS trial for its anti-inflammatory property in reducing fatigue. The trial resulted in 15% improvement, so it's not much to write home about. I am not trying it for anti-inflammatory property though. I am more interested in microglial deactivation via TLR4 receptor inhibition and curcumin is supposed to be one of the antagonists.

This paper  claims that curcumin significantly deactivated microglia in concussion fatigue patients after in vivo injection.  Taking orally is not the same thing obviously. Curcumin is famous for low absorption rate and it's not clear how much of what's absorbed actually gets to the brain. But I figure it's worth the try. If nothing, 15% improvement is still nothing to sneeze at.