• Read Chronic fatigue syndrome saps its victims, but new research may find the cause
• Read Unraveling the mystery of chronic fatigue syndrome
Though Whitney Dafoe can no longer speak and cannot write long messages, he wrote a description last December and January of what a “crash” from over-exertion from chronic fatigue syndrome is like. Here is an excerpt.
“I get a rush of some kind, not sure what chemical it is. The best way I can describe it is the feeling of ’embarrassed/ashamed surprise/panic.’ Like if you stood up to a presentation in class (at school) and realized you had no pants on. That rush in your chest followed quickly by a flushed feeling in face and head.
“It’s not the feeling of simple surprise, like if someone jumped out at you. It’s not like that. It’s the ‘Oh, no’ panic/surprise feeling of an embarrassed surprise. And I don’t think it’s because I’m feeling that way at all. It seems to be a similar chemical release.
“It is then followed by heat. The heat comes right after the chest rush and starts in my head, in the back of my head, and depending on how bad the crash is, moves down through (my) body from head toward feet.
“A mild crash only gets heat in head. Full crash my whole body gets really hot. The heat lasts longer the worse the crash. Really hot for 20 seconds, then warm for up to an hour, I think.
“Sometimes I’ve had a little more energy after a crash. Not really wired, just feel the crash pathway is blocked momentarily.
“A crash is also followed by some mental state that makes it hard to cope with the idea of crashing and getting worse. It kind of feels like I go into a desperation mode and am impatient. And the knowledge that I’m going to get worse now because of (the) crash is already upsetting but even more bad to deal with in this state. I often feel extremely desperate.
“Also, every time I crash, I get more sensitive to crashing once I come down from the momentary energy/reprieve after crash.
“I mentioned feeling desperate, but that may just be a reaction to the fact I know I was now going to get worse, and today would be another day in which I didn’t get any better despite my profound effort to avoid crashing and sacrifice all day.
“Because I couldn’t communicate what made me crash to my caretakers, they constantly made me crash so no matter how perfect I was avoiding crashes on my own.
“So after a crash, after the initial heat flush, I experienced something I call getting ‘white washed.’
“My whole train of thought and emotional state got wiped ‘clean,’ no matter what I was thinking and feeling before the crash. Afterwards I couldn’t feel anything or think at all. It left me (in) this ’empty’ haze that was awful — unable to think or feel anything. Totally numb mentally. Lasted hours sometimes, slowly faded as thought and feeling slowly return. Really awful.”
This is the precise problem with ME/CFS research in a nutshell. I also have been diagnosed with ME/CFS, possibly incorrectly as I had a gradual onset and a progressive disease course, but my PEM crashes are nothing like what Whitney describes. For me it feels like I got stomped on by a pissed off horse for weeks following physical exertion. My whole body hums for up to a week following strenuous (or even moderate) physical exertion and then it feels like someone let the air out of it and can take weeks or longer to recover. As long as patients like myself and Whitney are studied together as if we had the same disease, I think little progress will be made. Subgrouping patients into homogeneous cohorts is the key to the whole thing. Thank you so much to the Palo Alto Online for such a collection of sensitive articles and good luck, godspeed and thank you so much as well to Dr. Davis for his work.
I read this and cried in July and still thinking of Whitney and hoping that this article has led to some positive outcomes.
It is inspiring and extremely difficult to hear Whitney’s story.
I’ll share my story if it’s of interest to anyone:
I have been an ME/CFS patient for 7 years and it has been an overwhelming journey. Initially, I was confronted with disbelief from doctors who told me I was a healthy 21 year old- possibly with anxiety, they proposed. This after I explained how difficult it was to move my arms and how I had lost most of my previous strength in the arms and legs after getting a bad flu-like virus that didn’t improve. At its worst, I couldn’t speak. And I was bed-ridden for about a year.
In 2009, I met a qigong master (from China) in Santa Barbara who was able to treat the illness with energy work. She explained to me that having such a deep illness for so long had caused many channels and meridians to become blocked. She was able to unblock the meridians with qigong healing. Essentially, she sent universal chi to the areas that had been most affected by the illness. During the session, I could actually feel the energy returning to areas of my body that had been sick. She described it as taking out “illness chi” and putting in “healthy chi”. Within 3-4 months, through her treatments, I had recovered 70% of my health after being so sick that I never thought I would improve. When I was at my sickest and there was no improvement for over a year, I never would have thought I would find someone who could send energy to areas of my body and get it working again. I would definitely recommend that anyone with severe CFS find a qualified qigong master, but unfortunately they are very difficult to find and the results are not always as smooth as I had. But from my experience, that was the best treatment. I would recommend the teacher I went to, but I know she probably wouldn’t like me to broadcast her name on a forum.
I still have a long road ahead with this illness, it has permanently changed my immune system and I probably won’t ever to have a normal work life. But to go from how sick I was to where I am now has been very hopeful.
Thank you to Dr. Davis and the ongoing research on ME/CFS.
John, Whitney described his disease progression as progressive and gradual onset as well. Sounds like you have that in common.
There were to s of comments after this story that have just disappeared. Am I the only one who has noticed that hapoening on any number of threads lately? Weekly, have you been hacked again??
I became ill in December, 1987, with what was later diagnosed as Epstein-Barr virus. It is the same old story. Too, too tired; can’t do anything; every body system affected; have used nutrition with many supplements, acupuncture, homeopathy, antivirals in addition to conventional medicine. Is there no end?
I have fibromyalgia probably since I can remember. I am 54 years old now. I have learned self energy healing from a meditation center whose URL is http://puti.org. There are 2 local locations in Milpitas (bigger) and San Francisco. 510-676-6185 and putisfo@gmail.com.
Until over 4 years ago, I had tried all sorts of main stream and alternative medicine approaches. Now I am in my 5th year of doing their therapeutic, standing or walking, meditations. Their methods beat all the other methods.
Over there, miracles are common. I know this sounds con-artist-ish. But I heard many miraculous testimonials there in person.
My own conditions have been steadily improving albeit slow. I guess half century of fibromyalgia is something. But again, their methods beat all the other methods. I do it one hour per day. I could not afford paying a healer $100 per hour every day.
I visit Palo Alto Online often, specifically to try to check up on how Whitney is doing. Unfortunately there hasn’t been any new information for a long time… just the older stories & comments. It sure would be great if a PA Online reporter were assigned to write an occasional update, or even better: a regularly timed update.
There are many sympathetic well-wishers out here who have no access to that info, but who care so much for the young man, his family, and for other CFS/ME patients. Sharing Whitney’s updates would provide help to other caregivers and might spark treatment options for other patients.
Best Wishes to Whitney and blessings to Dr. Davis and family.