1. Patients launch a $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!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

Hospital Wants Input From Chronic Fatigue Syndrome and Fibromyalgia Patients on Possible NEID Center

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 19, 2012.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    At this point, 593 have taken the survey. (Thank you everyone) 8.9% chose "other."

    Tina
  2. Firestormm

    Firestormm Senior Member

    Messages:
    5,789
    Likes:
    5,873
    Cornwall England
    Whilst based in the UK, and I apologise in advance, but I felt I had to ask...

    Does it 'make sense' to invent terminology to this extent? It was interesting in the meeting I attended earlier today, that the subject of collective classification arose.

    The commissioners you see were talking (again) about, basically, bringing similarly treated conditions together. They used the phrase 'complex conditions' and I said, that does it really matter what you call it?

    It evolved into what I would term 'an unnecessary and pointless' period of discussion (especially as we were not afforded much time).

    It's rather like the term 'neuroimmune'. Is that even a real medical term? Does it have to be? What's the point? Would it change?

    Do we need to invent terms? Heck of a name for a medical centre - don't you think?

    Sorry. I just thought the above was 'odd' and it seemed relevant to mention it.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,247
    Likes:
    1,569
    Midwest, USA
    And I think they should have tacked 'metabolic' in there. ;)
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Firestormm, thank you for your comment.

    I appreciate your discussion with others about bringing these illnesses together. The British Columbia Center is Complex Chronic Diseases. Also, another descriptive term would be chronic multi-system diseases.

    The thing about neuroendocrineimmune diseases is that it exists in the medical literature, it isn't just a term pulled out of the air.

    http://www.nejm.org/doi/full/10.1056/NEJM199310213291708

    http://www.ncbi.nlm.nih.gov/pubmed/21281334

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2562609/

    http://www.annualreviews.org/doi/abs/10.1146/annurev.iy.13.040195.001515

    The name change working group suggested this name: http://www.ncbi.nlm.nih.gov/pubmed/15189800

    http://www.ncbi.nlm.nih.gov/pubmed/21153213

    However, the other two terms will work also. If this hospital embraces the concept of a center for these diseases, I'm sure they will decide what to call it. In the mean time, having the "NEI" name helps me emphasize these are system dysfunction diseases, when talking to these docs about them.

    Tina
  5. Firestormm

    Firestormm Senior Member

    Messages:
    5,789
    Likes:
    5,873
    Cornwall England
    Thanks for taking the time to reply Tina and I appreciate the cited research. My concern (labelling issues aside generally for the moment), is that even 'complex diseases' can embrace a great swath of diseases. As can neuroendocrineimmune if you think about it. And I am not sure that bringing these disparate terms together seeking to embrace the particular diseases you have and excluding all the others that might apply, is necessarily the best way to proceed. But I appreciate your reply.

See more popular forum discussions.

Share This Page