Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Hello, Has Anyone Cured Their CFS by 100%

Discussion in 'General ME/CFS Discussion' started by Abdulrahman, Mar 22, 2017.

  1. Abdulrahman

    Abdulrahman

    Messages:
    58
    Likes:
    85
    Hi,

    I cured my CFS in June 2015 after 21 years of disease, you can search my name for past input. Would like to see this message to be used as a compilation of those who succeeded in eradicating their Chronic Fatigue Syndrome Disease.

    So, I welcome people to share their experience in actually curing their disease.

    1- How many years did you have CFS?
    2- What was your most successful program.
    3- What cured you?
    4- How do you feel now?

    Thank you,

    Abdulrahman
     
    Last edited: Mar 24, 2017
  2. Cheesus

    Cheesus Senior Member

    Messages:
    1,186
    Likes:
    5,084
    UK
    The problem here is that people who get 100% well don't tend to hang around on forums full of sick people.
     
    Sancar, MEMum, Dechi and 15 others like this.
  3. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,283
    Likes:
    45,795
    This is an ME forum, not a chronic fatigue forum. I have trouble believing that someone fully understands ME or the actual symptoms involved if they are willing to refer to it as CF.
     
    Grigor, RL_sparky, Dechi and 18 others like this.
  4. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,119
    Likes:
    3,755
    Bristol
    I previously got to 95%. I was able to work full time hours, have a social life, drink alcohol and walk miles. It didn't feel like I'd been cured though. I'd often feel exhausted but it didn't seem to limit what I could do (now I don't have the choice). I needed to give a nod to pacing when planning activity timing, but overall I didn't do less than my friends. When I got viruses it seemed more severe than the other people who had them though.

    I think many people including researchers would count this as 'cured' or in remission, but I never did. On a thread like this it's important to pin down the meaning of words. Also to briefly explain the nature of your illness for comparison, without taking offence. I have pretty classic ME: glandular fever triggered 1998, delayed Post Exertional Malaise, large fluctuations from bedbound to almost well (and not in one direction). I also have POTS and could have another condition as well (having some neurological testing).

    I didn't do anything unusual to get that well. Just intuitive Pacing. This isn't a universal cure though, as it isn't even working for me again since a severe relapse in 2012.

    Also there does seem to be the possibility of fairly random spontaneous remission which happens in the ME-POTS subgroup according to Nancy Klimas. I suspect my (then undiagnosed) POTS went into spontaneous remission and I was just left with very mild ME without the vicious cycle of POTS and ME aggravating each other.

    Anyway, to people who are cured/in remission/ almost well I'd say it's great to hear what you think helped, but please also respect other people's need to interrogate this from all angles.

    AND enjoy your current health in all its beauty and mystery!
     
    Abdulrahman, ErdemX, Marky90 and 8 others like this.
  5. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,119
    Likes:
    3,755
    Bristol
    As an aside, the current ME research doesn't seem to point to ongoing infection as being the same as ME. This is not likely to be what ME is, it is triggered by threats such as viruses but not the virus itself.

    Therefore, if treating an infection clears up all symptoms the original diagnosis was probably a misdiagnosis. On an individual level this is amazing. Who cares what was the correct diagnosis you felt terrible and now you don't :) BUT it may be almost irrelevant in terms of discussing cures for ME.

    People with ME might be more prone to ongoing infections but this isn't ME itself.
     
    Last edited: Mar 23, 2017
    bertiedog, Jan, Aroa and 3 others like this.
  6. Techs

    Techs

    Messages:
    22
    Likes:
    30
    Not wanting to hijack the thread, but as a new member I'm just wondering if this is the consensus. The top banner describes the forums as CFS/ME. I do not know if I have ME, but I certainly fit all the criteria for CFS (for which I have been diagnosed, as well as FM and three forms of neuropathy). So am I welcome to participate or not?
     
    belize44 likes this.
  7. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,283
    Likes:
    45,795
    Of course. But that doesn't mean that people are welcome to redefine ME/CFS, or trivialize it by reducing it to a single, minor symptom.
     
    Dechi, justy and belize44 like this.
  8. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,119
    Likes:
    3,755
    Bristol
    @Techs theres a difference between chronic fatigue and Chronic Fatigue Syndrome. Lower case chronic fatigue is a symptom of loads of diseases, it's so vague it's almost meaningless.

    Chronic Fatigue Syndrome as a term is used differently by different people, but as far as I'm aware if you have this diagnosis (or want to find out about it) this forum is for you.

    In the UK medics tend to use ME and CFS as synonymous words but many people have passionate views about them being distinct illnesses. The WHO does put them in different diagnostic categories. Personally I think ME and Atypical ME for people who don't quite fit ICC criteria would be better.
     
  9. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,140
    Likes:
    3,176
    I doubt a 100% cure is going to happen spontaneously or coincidence until we have a disease mechanism that can be measured because remission is often not permanent from many examples
     
    otherworldly and mrquasar like this.
  10. Sandman00747

    Sandman00747 Senior Member

    Messages:
    101
    Likes:
    471
    United States, Kansas
    Certainly you are welcome @Techs. @Valentijn was just stating a very valid point that chronic fatigue is not an appropriate term to use here as the original poster did. Chronic fatigue is an irritating term to most all of us as generally the entire world believes they have chronic fatigue. We would give anything to simply suffer from chronic fatigue. ME/CFS is a serious disease of which most people have little to no comprehension. I would give anything to simply suffer from chronic fatigue. It's a condition, not a disease like ME/CFS. Just keep your terminology straight and all is well!
     
    MEMum, Dechi, Sushi and 5 others like this.
  11. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,119
    Likes:
    3,755
    Bristol
    Relating to my point above, CEBV (chronic glandular fever) is not what ME is, though it will feel very similar and may overlap.

    How long does someone have to be well to be recovered? I think without a credible explanation it has to be considered long term remission.

    @Alvin2 I've definitely known people diagnosed with ME say they're recovered, including people I've known before and after they were sick. Of course I can't tell if they had the same biological dysfunction I have, or if I was in their body if I'd define myself recovered. One of them is on my Facebook feed running marathons and going partying (definitely making up for lost time, she was mostly housebound only a couple of years ago).

    As a side question, have you known people well who then get ME? I think I've known more than you'd expect but I don't know if that's skewed by people thinking to tell me (they don't tell me of mutual friends getting MS for example).
     
  12. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,140
    Likes:
    3,176
    I understand, what i am saying is that we don't know if the problem is gone for good or is just in hiding until we have a verified test to administer
     
    Aroa, bertiedog and Mary like this.
  13. grapes

    grapes Senior Member

    Messages:
    206
    Likes:
    135
  14. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,119
    Likes:
    3,755
    Bristol
    I see what you mean. IIRC Ron D is going to look at this in people in remission with that nifty little gizmo he's testing. I think discussion of this was on the Claire and Ben's Adventure thread.

    My hunch would be there's something still there hiding when you're in remission but also things that have changed (it would be weird if the metabolomic results are the same in remission).
     
    Mary likes this.
  15. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,140
    Likes:
    3,176
    It seems that its not uncommon for those who improve to get worse again in the future, i really do hope they do identify the malfunction we are living with
     
    Aroa, starlighter and justy like this.
  16. Sandman00747

    Sandman00747 Senior Member

    Messages:
    101
    Likes:
    471
    United States, Kansas
    I totally aree @Jenny TipsforME . This beast went into remission for me for over 17 years, but the entire time I could still feel it inside of me, even though my energy level was quite strong and I always felt good but never quite great. Then about 3 years ago, wham bam, the entire process started all over for me. At least I wasn't shocked as I always felt it was still there. But I was certainly angry! I will be quite interested in what Dr. Davis finds.
     
    Aroa, Jenny TipsforME and justy like this.
  17. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,223
    Likes:
    11,729
    U.K
    Yes, this happened to me. 9 years in a remission to about 97% then measles, leading to pneumonia that lasted a year. Since then, been severely ill - more so than the first time for the past 9 years now. Using a wheelchair outside and currently fluctuating symptoms between mod and severe.
     
    Aroa, Sushi, mrquasar and 1 other person like this.
  18. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,223
    Likes:
    11,729
    U.K
    Yes, my experience exactly. I was also angry when i felt it all start up all over again.My remission appeared to be to near normal, I thought I was fine, but looking back most of the time I was still being dragged down by something.
    I don't know anyone who has had a second spontaneous remission - but lots of us around who have had long remissions only to get sick again. I wonder what Dr Davis and team make of us. We should have our own thread.
     
    bertiedog and Sandman00747 like this.
  19. valentinelynx

    valentinelynx Senior Member

    Messages:
    637
    Likes:
    1,372
    Tucson
    I called my remission 80%; some might say more. I was able to complete my internship and residency during my remission (before the 80 hour work-limits now in place). But, unlike my peers, I could not do anything other than work. All other time was spent resting. No parties, no skiing on weekends, no going out to dinner. But still, working very very hard.

    Remission lasted from 1997 to about 2009 (although I was not as vigorous in the last few years before major relapse if I'm honest with myself). I was in denial as I gradually got worse. Then, I took a full time job (after not having one for a couple of years) and Bam! after one day, I could hardly stand at the end of the day.

    I think I would have been better off if I kept looking to find out what was going on in my body during the "remission". I was in denial, like I said, and thought all was OK. So, when I finally got some good medical care, I discovered I had pretty severe immunodeficiency, and other things, like severe magnesium deficiency.

    So, even if you are better—please monitor your health closely. Maybe it will save you from a relapse.
     
    MeSci, Manganus, Aroa and 7 others like this.
  20. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,140
    Likes:
    3,176
    how did you find this out?
     

See more popular forum discussions.

Share This Page