Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May
This Friday, 29 May sees the tenth International ME Conference put on by UK research charity Invest in ME (IiME) in London. The day-long conference will include 220 participants from 17 countries and will be attended by researchers, clinicians and patients.
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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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  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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    Thanks Lilian - continued good luck on getting better :)
     

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