Reddit blog post, 9 Aug 2017: A plea from a fallen doctor on Chronic Fatigue Syndrome (ME/CFS)
I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits.
I am now completely bedridden from post viral CFS.
I am writing this to beg my fellow colleagues to take this disease seriously, understand that it is 100% organic in origin, and that it can happen to anyone.
I used to see CFS patients fairly often in my practice. Some of them were quite debilitated and some semi-functional. I always tried to be sympathetic and did what I could to help, but truth be told there was always a voice in my head questioning if their symptoms were psychosomatic. At times I delayed a diagnosis because the literature told me to wait 6 months. I recommended exercise, antidepressants, and psychotherapy because that had always been the conventional wisdom.
And when patients didn’t come back, I subconsciously assumed they had gotten better, and that I was justified in my approach. I feel tremendous guilt about this now.
When I got the flu that started this, I thought I would be out of work for 10 days. 10 days turned into 10 weeks, and then 10 months. The virus was gone, my labs were clean, and yet I still felt horribly ill.
- I could barely stand up in the shower due to orthostatic intolerance.
Later my wife would have to install a shower chair
- I could not read or write due to cognitive dysfunction
- I could not walk more than 45 steps without extreme lactic build up in my muscles
- Any minor extortion would produce an intensifying of symptoms for several days
- Add on insomnia, sensitivity to noise and light, and uncharacteristic emotional lability and you understand the hell my life became
Every type of conventional medical test came back negative or could not explain symptoms. My own family thought I was crazy (not to mention my friends, cohort, and colleagues).
Of course I tried the standard things I told my patients to do.
Antidepressants were hit or miss as they so often are and did not touch the core symptoms. Psychotherapy was helpful for coping.
Exercise of any kind was a complete unmitigated disaster that severely and permanently worsened my state.
Finally I did find lab abnormalities. Cytokines. Krebs cycle metabolites. Near zero ADH. As I lay bed-bound I slowly regained the ability to process complex data, and I poured through the research and discovered that yes this is a very real illness with organic abnormalities documented as early as 1932. Why aren’t we taught this in medical school?
I tried antivirals, antibiotics, hormone replacement, and yes I’ll admit, even some more questionable alternative medicine protocols.
Finally I went into remission using a combination of monoclonal antibodies (Rituxan, Cosyntex, Enbrel). Remission was glorious. I took my wife to Costa Rica, played with my grandchildren, and learned how to sail. And then I relapsed for no good reason and hell returned. As of yet I have been unable to reproduce the first remission.
I beg other doctors to take this to heart. CFS is a real disease, as bad as end stage AIDS or cancer. It is also treatable, but only through trial and error, and even then nothing is guaranteed.