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Hope, disappointment and perseverance: Reflections of people with ME/CFS and MS participating in biomedical research..., 2019, Lacerda et al

Discussion in 'BioMedical ME/CFS Research' started by Andy, Jan 11, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    Open access at https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12857
     
    boolybooly, Forbin, Sean and 10 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    Some interesting quotes from patients there.

    Some about how frustrating and demoralising it is to see research groups claiming breakthroughs, or yet another 'finally proof that it's not just in your head!':
    Some about how relieved some MS patients were to get a diagnosis after years of disbelief, with incorrect diagnoses of ME or psychological issues:
    It might be useful for patient advocacy groups for ME and for MS to join forces more often (or perhaps in countries with very limited resources, for a single charity to cover both diseases). There could be economies of scale achieved, at the national level when advocating and organising research (or as in in this case, developing biobanks), but also when delivering care at the local level. Collaboration of ME charities with the well-resourced and credible MS charities could not only help people with ME but also lessen the suffering of people with MS in the years prior to diagnosis.
     
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  3. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Years ago I met an MS patient and as soon as she discovered I had ME, she told me she had only been diagnosed with MS for less than a year and a few years before that she had been misdiagnosed with ME. She told me she was hugely relieved to have been rediagnosed with MS, her quality of care, the level of support she received from care professionals and friends and family changed instantly.
     
    Woolie, Roy S, Inara and 15 others like this.

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