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Research papers on long-term follow up?

Discussion in 'Information and Resources' started by mango, Feb 20, 2014.

  1. mango

    mango

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    Hello,

    I'm looking for research papers to use in my appeal against their refusal to grant me long-term sickness benefit. (I live in Sweden.)

    I'd be super grateful if anyone could point me in the direction of solid papers etc that clearly state that a person with severe ME is very unlikely to regain their ability to work (within 3 years, or ever).

    This is the only example I've found so far... http://www.ncbi.nlm.nih.gov/pubmed/21401284

    Any help would be very much appreciated! Thank you so much in advance.
    NK17 likes this.
  2. Snow Leopard

    Snow Leopard Senior Member

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    Australia
    The have been a few studies of 5 years or longer. No studies are going to explicitly state that patients are unlikely to recover, but they do show that many do not recover and disability remains high.

    Illness and disability in Danish Chronic Fatigue Syndrome patients at diagnosis and 5-year follow-up.
    http://www.ncbi.nlm.nih.gov/pubmed/15016582
    http://www.cfids-cab.org/cfs-inform/Prognosis/andersen.etal04.pdf

    Nine-Year Follow-Up of Danish Chronic Fatigue Syndrome (CFS) Patients
    Impact on Health, Social, Vocational, and Personal Lives
    http://informahealthcare.com/doi/abs/10.1300/J092v14n02_02
    http://www.me-foreningen.dk/filer/Nine_year_study.doc

    CFS prevalence and risk factors over time (related to the Jason study mentioned above)
    http://www.ncbi.nlm.nih.gov/pubmed/21224330

    Chronic Fatigue Syndrome Progression and Self-Defined Recovery
    http://informahealthcare.com/doi/abs/10.1300/J092v05n01_03

    Finally, the systematic review of prognosis that everyone seems to reference:
    http://www.ncbi.nlm.nih.gov/pubmed/15699087

    This is pretty much the whole list. The other long-term studies focus on the prognosis of adolescent CFS.

    I hope this helps.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Would Dr bells 20 year follow up help?
    mango likes this.
  4. AndyPandy

    AndyPandy Making the most of it

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    Hi Mango

    The Occupational Physician who assessed me as totally and permanently disabled for work cited the following articles in support of her assessment:

    Hill NF, Tiersky LA, Scavella VR, Lavietes M, Natelson BH, Natural history of severe chronic fatigue syndrome, Arch Phys Med Rehabil; 1999 Sep; 80 (9): 1090-4

    Vercoulen, JH, Swanink CM, Fennis JF, Galaina JM, Bleijenberg G, Prognosis in chronic fatigue syndrome: a prospective study on the natural course, J Neurol Neurosurg Psychiatry 1996; 60: 489-494

    FYI The articles are from the 1990s, but the assessment was done in 2012. I haven't read the articles. I only just remembered them when I read your post! Hope you can find them online.

    Best wishes.
  5. mango

    mango

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    thank you so much, all of you! very very helpful, and very much appreciated! found some great ones thanks to your ideas.

    i keep looking for more, so please don't hesitate to add new ones if you know of any not listed here above. thank you so much in advance.
  6. PNR2008

    PNR2008 Senior Member

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    This may or not help in Sweden but in 1989 when I applied for disability and even after I got it I was badgered for improvement reports all the time. Very stressful wondering if I would loose my benefits at any time.

    The doctor was Jesse Stoff MD and one of the first at the time treating CFS. He was very encouraging and tried to treat every symptom with alternative and allopathic medicine and a sense of success but on my papers he wrote "prognosis very poor". This was a doctor who had seen many patients with this illness and was very positive, it seemed unusual at the time and I only saw this when I requested his copies months later. But it worked my inquiries were only on a yearly basis then less after that.
    NK17 likes this.
  7. mango

    mango

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    thank you for sharing, i'm glad to hear it helped you!

    i have papers from a couple of different doctors (one is a neurologist and a really great me-specialist), and both their papers say that i won't be able to work again. however, the social insurance bureau (Försäkringskassan) don't accept that and still claim that i'll be able to start working soon again ("in a year or two"), despite the fact that i've been very ill since 2004, haven't been able to work since 2006, and i'm still getting worse... been bed-bound for several years now as well. it's such an insane and unfair situation that has been going on for way too many years (has affected my health really badly), so i'm desperately grasping at straws now... it's usually not this difficult for people in sweden to get long-term sickness benefit, but unfortunately i'm not the only one struggling.
    NK17 likes this.
  8. Mya Symons

    Mya Symons Mya Symons

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    Bumping this up because I knocked it off.

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