Pause for the Cause

Winter, hibernation, and maybe remission

Bedrest, radical rest, remission rest…whatever you call it, that’s where I’m at. I’ve spent about 11 months at a diminished baseline, one I would characterize as moderate-to-severe. PEM started to get triggered more easily and crashes more frequent. My symptoms and level of function have felt like a roller coaster.

I’ve made the decision to concentrate on a 6-month bedrest, which will put these posts on hold for a bit. It seems for many, the closer we get to the “severe” category of ME, the harder it becomes to reverse the trend. Maybe, as Ron Davis recently described (below), the disease is “cell autonomous” and the sicker we are, the more cells are involved, and this leads to a bigger and bigger hole from which to dig ourselves out of. If that’s the case, I need to stop the trend I’ve been seeing in myself.

Ron Davis describes one of the metabolic cycles that appears to be broken in ME patients, how that translates to a “cell autonomous” disease, the spectrum of the disease, and possible treatment pathways to be explored.

ME is sometimes described as a “remitting/relapsing” disease, like some forms of MS. We can move along the disease spectrum and experience periods of time at a better (or diminished) baseline. In my opinion, the most credible remission stories have come from periods of radical rest. We know there’s strong evidence of mitochondrial dysfunction via cellular energy metabolism, and the apparent connection with aerobic vs. anaerobic states. Understanding this connection suggests the possibility of remission through carefully avoiding the anaerobic state and minimizing PEM. Assuming ME is “cell autonomous”, every cell in our body has its own turnover rate. Perhaps radical rest with the suspension of the anaerobic trigger allows enough cells to turn over for remission to occur. And strictly staying within one’s “energy envelope” maintains remission thereafter.

The Visible App

The single most important tool I’m using during this period of rest is the Visible App. I’m using the paid version, which includes the Polar arm band and the “pace points” system. I spent about 3 months up front establishing the pace points threshold I felt I was at—meaning, the number of points I could consistently use day-to-day without significant PEM (my baseline). I have had to also figure out how much cognitive activity triggers PEM, since the pace points on Visible are primarily based on resting heart rate and heart rate variability. Screen time, talking, reading, music, and audio books are all cognitive tasks requiring loads of ATP and must be metered out.

The plan is to stair step my way down, stay low, and slowly come back up. Here’s what my schedule looks like:

November 20 – December 1

Daily Visible pace points no more than 17

December 2 – December 22

Daily Visible pace points no more than 12

December 27 – January 31

Daily Visible pace points no more than 10

February 1 – February 4

Daily Visible pace points no more than 12 (sanity break)

February 5 – February 29

Daily Visible pace points no more than 10

March 1 – March 4

Daily Visible pace points no more than 12 (sanity break)

March 4 – April 1

Daily Visible pace points no more than 10

April 2 – April 14

Daily Visible pace points no more than 12

April 15 – April 22

Daily Visible pace points no more than 15

April 23 – April 30

Daily Visible pace points no more than 17

Start assessing baseline at and above 17 in May

I’m not sure if I’ll improve my baseline, but I have the good fortune and privilege to be able to try. I recognize many others can’t simply take months off. Wherever and whenever you are able to conserve energy and avoid your anaerobic threshold may be effort well spent.

For a complete picture, other things in my treatment plan include low dose naltrexone, ketotifen, singulair, famciclovir, Acetyl-L-carnitine, N-acetylcysteine, alpha lipoic acid, curcumin, quercetin, ubiquinol, fish oil, D & B. Due to my primary immunodeficiency, I also do at-home subcutaneous immunoglobulin replacement therapy every week. There’s always some level of interest in IVIG/SubQ for ME in the community. Personally, I have not experienced any improvement in my ME from Ig therapy. I also use transcutaneous vagus nerve stimulation with Truvaga and near infrared light therapy. Last, I treat my kitchen as an extension of my medicine cabinet. My diet is whole foods based with an emphasis on protein and fiber, minimally processed foods, low sugar, and complex carbs.

Do I think any one of these things is going to induce remission? No. I have hope, though, that a comprehensive approach through time might move the needle enough to improve quality of life.

See ya on the other side!