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Mostly Recovered From ME/CFS After 22 Years!!

Source of the Story
My story
Resource Type
Patient Story
  1. Chronic Fatigue Syndrome
Disease Course Over Time
Sudden onset for avid bicyclist (200 miles per week) and cancer biology grad student. Deteriorated over 4 years until I couldn't work full-time or walk around the block. Diagnosed by Dr. Daniel Peterson in 1999. Dr. Nancy Klimas (2013) and a PA of Dr. Jose Montoya (2014) concurred that I have ME/CFS. Stable after that until 3 years ago when I got suddenly worse after a short viral illness and became almost housebound. Then significant improvement from sleep meds followed by no improvement for 3 years. Before I got sick there was lots of physical and emotional stress (fairly major surgery, bicycle accident with concussion and broken bones, trouble with thesis project, my dad got diagnosed with cancer).
Type of Onset
acute flu-like
Approximate Date of Illness Began
>20 years
Functionality at it's Worst
Mostly homebound
PEM big-time, intermittent flu-like symptoms and painful axillary lymph nodes. Pretty much no cognitive issues (very lucky on that one!).
Positive Test Results
Reactivated Epstein Barr virus and various abnormal cytokines,low to low normal NK cell fundtion.
Treatments That Made A Big Difference
Getting into a "push comes to shove" situation where I was under huge pressure to resolve my PEM which I somehow managed to do. It's been all uphill ever since.
Treatments That Helped
Sleep meds- amitriptyline and doxepin helped significantly. Amygdala retraining may or may not have helped. I had done it for 6 months just prior to the above incident with no apparent effect while I was practicing the technique. Six month courses of famvir, valtrex, and acyclovir may or may not have helped. I had no improvement while on them, but did suddenly improve shortly after ending the last course of anti-virals (acyclovir). Prescription acetyl-l-carnitine may have helped a little; ditto LDN.
Treatments That Had No Effect
Amygdala retraining and antivirals may have had no effect (see above). I tried pretty much all the supplements you can think of with no improvement. Acupuncture and homeopathy did not help. I tried a tiny bit of seated yoga but it just set off symptoms. I tried walking (starting ridiculously slowly and increasing ridiculously slowly) but always hit a wall after getting to 5-8 minutes. Antidepressants did nothing- in fact I got worse while on them (I don't think they made me worse, just that they couldn't stop the downward slide I was on in the first several years of my illness). Anti-candida diet did not help.
Treatments That Made You Worse
Provigil, Imunovir, Ayurvedic medicine
Present State of Health
  1. Almost recovered - Able to lead norrmal lifestyle
Practitioner Associated With Recovery
Words of Advice
I don't know quite what to suggest, other than for me I believe what has been going on is brain structures stuck in a hair trigger and hugely over the top response to stress, and I'm now having a conversation with those structures (which recent neurological research says is quite possible) that activity is OK and please calm the f*** down!
View attachment 1906 My "push comes to shove" situation mentioned above View attachment 1907 was as follows:

My husband and I decided to go to New Zealand. This was a risk, and I was (rightfully) quite worried about what shape I would be in once the plane landed. But I had wanted to go since before I got sick, and my husband and I were getting to that age when you don't know how much time you have left! So we just went.

Five days into a 2-week trip I had a bad PEM episode, which would normally have taken 7-10 days of rest to resolve. I was very depressed, feeling like I had ruined the trip for myself, my husband, and my brother who was also along. Somehow, 24 hours later, I was fine! I went on to have a mostly symptom-free trip, taking risks I otherwise wouldn't have taken (because I was on the trip of a lifetime!) and getting away with them. The symptoms I did get were gone by the next morning instead of dragging on for days.

This gave me confidence that the sort of ideas behind amygdala retraining (stress response system stuck in overdrive) were on the right track, and confidence in my ability to heal myself, if only I could converse with my amygdala and other stress response parts of the brain. Although the idea of a stress response badly stuck in total overdrive resonated with me when I first heard about it a couple of years ago, I have long considered viruses to be the likely problem. Perhaps viruses were a part of the problem. In my case, it's very hard to say. I am however quite convinced that this stuck in overdrive stress response, whatever the cause(s), explains my illness and surely applies to a least a subset of other ME/CFS patients.

I am currently walking two miles every day at 3 mph in one go.

P.S. It is not helpful to conclude that these types of reports make this a "psychological" disease. I certainly don't think of it that way, and like most of you have plenty of lingering anger over this being thought of as an illness of malingerers or hypochondriacs. Putting my illness in the neurological category is appropriate. In recent biomedical thinking, it is outdated to think of illnesses as psychological or physical- it's all both. The causes and solutions to this illness are what they are, so as they become clearer, let's just accept them, whatever they may be, and move towards better health.
Marilyn Lemmon
First release
Last update
2.50 star(s) 2 ratings

Latest reviews

she is nowhere in recovery
Marilyn Lemmon
Marilyn Lemmon
I consider myself to be MUCH better because I am much better. I can engage in many activities that I was unable to for years, and I don't have PEM episodes anymore, so I feel much better in addition to being able to do so much more. I'm not claiming to be fully recovered, just much better. You are of course entitled to your opinion. However, you might think about the effort I took to try to help the ME/CFS community in writing about my experiences, and be sure you actually read the whole thing before posting a negative review. I originally decided to write it because my ME/CFS friends encouraged me to do so. I wish you well in your journey towards better health.

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