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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Senior Member
Sleepy Hollow Canada
I am starting to suspect I am a person who had a lengthy remission from ME/CFS. I suddenly became ill 12 years ago. When I went back and re-read the neuro consults, my previously solid sleep became broken, my thoughts were slowed and confused, I had poor balance, I was light sensitive, and extremely fatigued with no stamina. My MRI showed a few tiny lesions, but not MS. I was housebound for 3 months, then managed to return to my part time work, but I remember despite telling everyone I was feeling fine, I used to go to my car 2 or 3 times a day for months to nap just so I could manage. The diagnosis at that time was probable viral encephalitis.

I never completely regained what I lost in that episode, either intellectually or physically. I stopped doing the NY Times puzzle because I suddenly couldn't do it anymore. I did manage to take courses and did well, but it took more work than in the past. I always paced myself and avoided exercise, simply because it was the best way to manage. I believed it was related to damage from encephalitis. It wasn't obvious (I cover well) but I knew there were impairments.

In 2009 I had a series of illnesses (anemia, shingles, cellulitis, and abdominal surgery). Throughout all that time my primary complaint was fatigue. I suspect those illnesses made me susceptible to a resurgence of a latent virus, or maybe the virus exploded and made me susceptible to the illnesses- (any thoughts?). Each of those illnesses were treated and resolved but I didn't get better. I stayed exhausted, had broken sleep again, developed myalgia and figured out that I have PEM, not just weakness. (I have no idea if I've had it for years or not, but it certainly was not a huge barrier in my life). My MRI now shows numerous tiny lesions but again not indicative of MS. I have all the classic signs of ME/CFS now and I'm spending a lot of time trying to learn the best way to manage it.

I haven't read histories like this. Does this seem like a reasonable theory or does it seem more likely I simply had 2 illnesses? I wish I could go back a few years and compare blood samples! Thankyou in advance for any thoughts on this.