1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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Article: ME/CFS Recovery/Recovering Stories Requested

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 7, 2012.

  1. Cort

    Cort Phoenix Rising Founder

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  2. lilian54

    lilian54

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    east midlands, uk
    Here's my info:

    Type of onset
    Bad bout of 'flu
    Age at onset
    26
    Degree of debility at its worst (how sick were you?)
    4.5 out of 5 at worst, with some periods of several years with few symptoms
    Length of illness
    30 years
    Effective treatments
    b12/folate one a day for many years, then discovered high dose methylcobalamin (started 2009, via Freddd on the WrongDiagnosis forum on B12) after a crisis in 2008, Nutri Thryoid/Adrenal (started 2010 after getting thyroid/adrenal tests and finding adrenal exhaustion and problem with T4/T3 conversion). Currently started on T3 after reading 'Recovering with T3' by Paul Robinson.
    Degree of Recovery
    Varies between 90% at best to around 50%. The digestive problems - incl IBS, acid reflux, constipation - are much improved but the tiredness and neurological probs (neuropathy, memory loss, brain fog) although improved are still very much around.
    Comments/Advice for others
    The worst thing after having the condition is to have medics and even family/friends not believe you - having support is a lifeline. The best support is people looking together for answers and ways to make some progress, as on this forum.
     
  3. justy

    justy Senior Member

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    U.K
  4. Cort

    Cort Phoenix Rising Founder

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    I contacted her - as I remember it was a long slog that was really aided by attacking her digestive problems...For a good number of people who have gotten well there isn't a single thing they can point to....they just slowly improve over time.....not that many - "X" turned my life around moments....
     
    justy likes this.
  5. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Thanks Lilian - continued good luck on getting better :)
     

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