Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, March 2, 2016

My changing prognosis

This summer will be my fifth year anniversary with ME/CFS. Up until recently, I have maintained the attitude that there was a slight chance I might recover on my own. I had read stories about people who recovered, especially within the first three or four years. There was even a small place in the back of my mind that hoped my case of ME/CFS was really just an extended case of post viral syndrome. I could see from statistics I found online, and from interacting with other patients, that this hope was thin. But it was easy to maintain that hope as I was gradually improving, albeit at a glacial pace.

As I have written recently, my health with ME/CFS seems to have peaked in March, 2015. Since then, I have been sliding backwards. I think and hope that I may have found the bottom of this backsliding, but that is still an open question.

Sometime in the last 6 to 8 months, my attitude evolved. I stopped hoping that my illness might all be temporary. I don't mean this to sound glum. There is, of course, always some hope. But now my view is that the peak I experienced in March, 2015, may represent my realistic ceiling. I will of course keep looking for answers, trying various treatments, and reading about the latest research. I still have a tremendous amount of hope that research will lead to more effective treatments. I feel it's healthy to occasionally reassess where I am on my journey with ME/CFS and adjust expectations accordingly. 


  1. Well said. I did wind up in a similar mental and emotional place around my fourth year. It's not exactly acceptance, perhaps more a realistic (re)assessment. Still keepin' the faith though, dude!

    1. Thanks StoneCutter. It's good to know that others have traveled the same path before me.

  2. Greyson James here, longtime reader.

    I've had CFS symptoms for well over a decade, making slow, steady progress, and with long plateaus and setbacks. So I know what you're feeling.

    Some ideas.

    Community acupuncture. It's much cheaper than regular places, usually less than $35/session. I've seen as low as $15/session. The advantages are you can experience different practitioners to find the one(s) you like best, it's cheaper so you can go more often, and where I go I can schedule same day, which is great bc acupuncture helps me best when I'm feeling a certain type of tired, and other times feels less helpful. I'd suggest 1x-2x for a month and see how you feel at the end.

    Juice Fast. I did a 7 day one. But much shorter I think would work, even just one day (for awhile I was doing them every Sunday). Just make sure you're going to be home all day. It's time consuming. I had to drink a juice every 2 hours to feel like I wasn't going to starve to death. And I was on the toilet constantly.
    I made all my juices fresh with a juicer, no store bought juice. And mostly vegetables, minimal fruits. I liked celery and cucumber bc they make a lot of juice and aren't too sweet.

    Castor oil. Topical or internal. Internal is rough, I make sure I'm at home all day, bc on the toilet constantly. Topical's great for pain issues. During my 7 day juice fast I put castor oil on my cheek, and no more TMJ that I'd had for over a decade.

    - Greyson James

    1. Hey Greyson! Nice to hear from you again. I appreciate those suggestions. I hope you are doing well...

  3. Hello.
    Wanted to write and wish you all the best. I think it is very healthy and brave to accept where you are now and look foreward with optimism. None of those are easy. We are lucky in a way, I think, because we live in such an exiting time when it comes to research. You might not have to wait to get better, but hopefully will have the option to get treatment someday, someting those who went before us could only dream of.
    I truly hope you get to a state of less pain and symptoms.
    I have been ill for 12 years myself, and it took me more than 5 years to accept that things migt not be looking up with time. But the acceptance helped me live better with te illness, and I found there were good things in my life too. I allways try to do things whenever I can that makes my heart sing. It makes everyting easyer to deal with. It is not more complicated than listening to a snach of song I love ans singing falsly along:-) I cannot remember if you have that on your activitylist for cfs, but its a tip anyway. Simple but effective.
    All the best.

    1. Charlotte, first, I'm sorry it took me so long to respond. I have been preoccupied with other things besides my blog lately. In any event, thank you so much for relating your experience. Hearing from other patients like you is one of the things that keeps me going with this blog.

      It's interesting that we both moved into an "acceptance" phase at about the 5 year mark. I wonder if others have followed that pattern too.


  4. Hi, I had chronic fatigue for five years - (fully medically verified by income protection insurers - well the effects were verified but they didn't like the diagnosis) - severe cognitive impairment etc. Then one day it just went. This was eight years ago, before I knew about epigenetics. I was following an exercise programme, had my amalgam fillings removed and followed an ayurvedic protocol but besides that was taking no supplements whatsoever. I just wanted to encourage you that just because you have had this for five years doesn't mean it is a life time affliction. For me I just took every day as it came and one day it just went. All the very best to you - I really admire all the efforts you have gone to to share your knowledge with others, Louise