The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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ME/CFS Spontaneous Remmission

Discussion in 'General ME/CFS Discussion' started by Ecoclimber, Jun 24, 2015.

?

IMPORTANT: How Many ME/CFS patients had a Short Term 24-72 hour Remission?

Poll closed Jul 15, 2015.
  1. Activity Level 1-5 before Short Term Remission

    44.4%
  2. Activity Level 5-8 before Short Term Remission

    55.6%
  3. Most extreme conditions improved able to resume most normal activities after remission

    0 vote(s)
    0.0%
  4. Relpased back to prior condition

    88.9%
Multiple votes are allowed.
  1. Ecoclimber

    Ecoclimber Senior Member

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    How many patients diagnosed with ME/CFS using the CCC criteria by a physician obtained a spontaneous remission (completely back to normal for the most part free of all severe symptoms including neurological..brain fog, short term memory loss ) within a short time frame of 24-72 hours after starting a NEW prescription medication, supplement protocol or some other intervention ( eg: CPAP, TMS, food elimination, Wahl's diet, evironmental -change of location, temp variance, humidty/dryness etc.) but after that short period of remission relapsed back to your prior condition with your most severe conditions still intact.

    The time frame would include the entire time period of initial onset to now..

    Participation is important as this could be used for research purposes if there are enough respondents. Thanks for participating.:)

    OK, couldn't edit the poll.
    Should read

    Activity Level 1-5 before Short Term Remission or
    Activity Level 5-8 before Short Term Remission and
    Most extreme conditions improved able to resume most normal activities after remission or
    Relapsed back to prior condition

    1 is lower and 10 is higher. Sorry, should have used BASDAI index.
     
    Last edited: Jun 25, 2015
  2. Antares in NYC

    Antares in NYC Senior Member

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    I had such a remission before. Can you please clarify the answer options listed? Do you mean the level of activity before the remission took place?
     
  3. Ecoclimber

    Ecoclimber Senior Member

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    Yes, I changed the poll to make it clearer. thx

    Eco
     
  4. shannah

    shannah Senior Member

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    @Ecoclimber

    I need clarification on the activity level. Does '1' represent very little activity while '8' represents a higher degree of activity?
     
    Ecoclimber likes this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Would you be interested in this type scenario? I took a 6 weeks treatment which, after I got over the side-effects of the treatment, allowed a pretty much full remission for about 2 years.
     
  6. Ecoclimber

    Ecoclimber Senior Member

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    Unfortunately not. I'm focusing on something more specific that operates within a very short period of time. It has to do with a specific medication or other changes implemented with an immediate reaction.
     
    Sushi likes this.
  7. Ecoclimber

    Ecoclimber Senior Member

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    Yes 1 is lower 10 higher Sorry should have use the BASDAI Index measurement.
     
  8. Antares in NYC

    Antares in NYC Senior Member

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    Here's my experience:

    My activity level has been consistently at 6/10 for the last 12 or 13 years. Most of my symptoms are cognitive, neurological, memory, fatigue and sleep-related. Brutal and relentless brain-fog for 16 years now.

    I've had semi-remissions before, but nothing like what happened to me exactly 4 years ago, in June 2011.

    I had major surgery (orthopaedic, not related to CFS). It was quite invasive, complex, and quite painful, and it required me to remain hospitalized for a couple of weeks. Because of the invasive procedure, I was on a cocktail of IV antibiotics on drip during my stay there. It was an awful experience, and despite the painkillers, the pain was overwhelming.

    By the end of the second week of my hospitalization, I woke up one morning FREE of symptoms. Brain-fog: gone, cognition and memory: restored, neuro symptoms: vanished. I was shocked and elated. For a couple of days I devoured every book, magazine and movie within my reach in the hospital bed. Reading was easy. Following narratives was not a problem. My mind was clear and fresh. Old and recent memories were clear and easy to access.

    Then, within two days of being released from the hospital, all the symptoms came back, relapsed to the same miserable state I was before.

    To this day I have no clue what did it: was it the IV antibiotics? Was it the oxygen supply? The pristine and dry air quality at the hospital? It definitely was a tiny oasis of hope after years of despair. I still harbour the hope there's a way out of this nightmare.

    PS: the remission lasted somewhere between 24 and 36 hours. Upon my release from the hospital, all my symptoms crept back in.
     
    Sasha, Effi and Ecoclimber like this.
  9. Ecoclimber

    Ecoclimber Senior Member

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    Yes, that is what I am looking for. Since you are located in NY, I assume you checked for Lyme disease using western blot since it is so prevalent in NY? Were you ever placed on doxcycline and if so did you notice any improvement?
     
  10. Antares in NYC

    Antares in NYC Senior Member

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    I tested positive for Lyme in Boston back in the late 90s. Was treated with doxy for 9 months by Dr. Donta, but almost two years after falling ill. I recovered from bedbound to about 75%. I remained in a 6/10 state for over a decade, then everything started going downhill since about 2009. Now I have developed all sorts of systemic problems, on top of being diagnosed with ME/CFS.

    I can't have doxy anymore: my body has become extremely allergic to tetracycline. I have tried two different oral antibiotic protocols in the last couple of years, didn't make a dent. I have not tried IV antibiotic treatment for late stage Lyme. I simply can't afford it, and my insurance will not cover it.
     
    Last edited: Jun 24, 2015
    Ecoclimber likes this.
  11. daisybell

    daisybell Senior Member

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    How are you going to know what percentage of people have had this short term remission?
    if I've never had this, how should I answer or do you not want me to??
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Have never had a remission but it looks like you only want responses from people who have. Is that correct?
     
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  13. Ecoclimber

    Ecoclimber Senior Member

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    Yes, only those who had a remission.
     
  14. Kati

    Kati Patient in training

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    The poll is not clear because you do not provide the answer "never had a remission" which is my case.
     
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  15. Kati

    Kati Patient in training

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    You question is how many had a remission, it implies you want to know how many did and how many did not.
     
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  16. Ecoclimber

    Ecoclimber Senior Member

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    I don't care how many didn't as I know there is a significant majority that have not or can't remember. I just want a rough estimate of how many had a sudden remission followed by a sudden relapse to determine whether it's worth pursuing this track that I am on.
     
  17. justy

    justy Senior Member

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    I have had short 1 day - 2 week remissions during the last 7 years 9and one long for 8 years before that) but it was never (apart from once) directly related to a drug or supplement - just spontaneous. The one that was in response to a drug did not come on suddenly but after a few weeks of taking the drug...I don't think this fits your idea does it?
     
    Ecoclimber likes this.
  18. Kati

    Kati Patient in training

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    You do whatever you like, but if the percentage of those who have had any kind of remission is like 10%, compared to those who haven't, it just means that you are studying a very small subset. You just need to be aware of the initial bias, that's all.
     
    Snow Leopard likes this.
  19. Ecoclimber

    Ecoclimber Senior Member

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    If the number is that low, then further investigation will not go forward. There has to be a meaningful response but I do know on PR, very few actually participate in polls for some reason, so I have to factor that in as well.
     
  20. leokitten

    leokitten Senior Member

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    I'm have ICC/CCC ME with activity level 6-7 and with really aggressive resting for a week or more I can get a spontaneous remission or major global improvement in symptoms for a day or two. The longer I aggressively rest the longer the remission lasts but then the symptoms always come back and I return to where I started.

    No medication or supplement has ever induced any kind of remission or spontaneous improvement after starting it.
     

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