1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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What would YOU say?

Discussion in 'Action Alerts and Advocacy' started by Timaca, Dec 8, 2011.

  1. Timaca

    Timaca Senior Member

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    If you could say one or two (or three) things to a doctor, med student or congress person about your illness, what would it be?

    Please keep your reply brief....one or two sentences per point.

    I've got an idea for a possible project and I want your input! :thumbsup:

    Thanks,
    Timaca
  2. Nielk

    Nielk

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    Queens, NY
    1- it doesn't have a proper name
    2- there is no cure
    3- it is debilitating in a multi-function way
    Ocean and ahimsa like this.
  3. Dreambirdie

    Dreambirdie work in progress

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    N. California
    1. M.E. a chronic debilitating neuro-immune disease
    2. those who have M.E. have a much greater likelihood of developing lymphoma and heart problems
    3. our government has FAILED us miserably by not funding the badly needed research
  4. CBS

    CBS Senior Member

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    Western US
    1. What you are able to see when you look at me likely says more about you than it says about me.

    2. There are effective treatments. Incremental gains can add up to a greatly improved quality of life. The fact that there is a lot going on in ME patients means that until we better understand the core underlying issues, progress might be defined as a combination of treatments aimed at addressing the systems that are misfiring. Many people are looking for the home run (and dismissing ME as psychological because of the absence of a home run to date). In baseball terminology, maybe some of us could benefit from playing more "small ball."

    3. Don't believe the "poorly understood," "poorly defined" BS that is spouted by those who have failed to understand and haven't bothered/are too threatened to define.
    RL_sparky likes this.
  5. Carrigon

    Carrigon Senior Member

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    PA, USA
    This disease steals your life, your entire life. You lose the ability to work, go to school, socialize. Everything is gone.

    The name must be changed to reflect the seriousness of this disease.

    Patients need to be treated with respect.
    Ocean likes this.
  6. floydguy

    floydguy Senior Member

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    - The name must be changed. It is not merely tired for 6 months and 4 random symptoms.
    - Based on the research of Klimas, Komaroff, Light, Montoya, etc. it should be dx'd based on inclusion not exclusion, ie legitimate lab tests, not vague symptoms.
    - The CDC (Control, Deception & Corruption) is incompetent in regards to this disease (and probably in other areas too).
    taniaaust1 and Ocean like this.
  7. health_seeker

    health_seeker

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    US Pacific North West
    1. A number of cost-effective treatments exist which have greatly improve quality of life for some patients with CFS/ME.
    2. There is a widespread misconception among the medical community that CFS is a
    Psychological condition which can be cured through exercise and positive thinking.
    3. These misconceptions mean that instead of getting the medical interventions which
    could potentially improve their lives, many patients with CFS are told to exercise and given cognitive behavioral therapy, which worsens their condition, and sometimes pushes them into major depression, even suicide.
  8. Sparrow

    Sparrow Senior Member

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    1. It is very real, and can often be far more debilitating and life-shattering than just about any other ongoing disease out there. Patients need far more respect, support, and sympathy.
    2. It is not a lost cause. Many credible doctors are using drugs and supplements with success. But we desperately need more research.
    3. The symptom of fatigue is often one of the easiest ones for patients to live with. There are so many others, and they are so much worse.
    health_seeker likes this.
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    It's a disease causing multiple-system dysfunction, no one knows the cause.
    Some are bed bound for years, others make some improvement but live with some limitations and have relapses, few recover completely.
    For me, it is like I have early Alzheimer's disease, getting chemotherapy and in menopause all at once.

    Tina
    Nielk likes this.
  10. eric_s

    eric_s Senior Member

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    Switzerland/Spain (Valencia)
    - 1 Million people affected, costs 20 Billion every year
    - No effective treatments
    - Study this!
    Snow Leopard and Nielk like this.
  11. biophile

    biophile Places I'd rather be.

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    Some good suggestions on this thread. I chose a different format and take on the situation, something from a while ago for another thread but didn't get around to posting it. Give the person this poster to hang on their office wall, I hope this message comes across loud and clear!:

    ocean-psychobabble.jpg
    ahimsa and Nielk like this.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    +1

    __________________
  13. Ocean

    Ocean Senior Member

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    U.S.
    So true about #3!
  14. jonnyboy

    jonnyboy

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    Kent, UK
    1. This illness is a life wrecker.
    2. We are NOT just tired
    3. See points 1 and 2 above
    Timaca likes this.
  15. Snow Leopard

    Snow Leopard Senior Member

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    Australia
    1. Imagine you had only 1 hour a day to concentrate on an activity that you enjoyed/felt was important (including work), what would you do?
    2. If you had a disease that caused this, would you be upset that it is the most neglected disease in terms of funding vs societal disease burden?
  16. biophile

    biophile Places I'd rather be.

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    1. ... and during that hour of subpar concentration you still have symptoms.
    2. ... and deemed irrational extremists for pointing out methodological flaws in the small amount of research that does get funded.
    ahimsa likes this.
  17. Snow Leopard

    Snow Leopard Senior Member

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    Australia
    Nice additions. :thumbsup:
  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Kidney stones, meningitis, scumbags trying to stick you with knives are NOTHING compared to living with this, because as damn bad as they are, those things are short term, where as we have to live with M.E. for the REST OF OUR LIVES.
    I say this from experience.
    Nielk likes this.
  19. Timaca

    Timaca Senior Member

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    I appreciate everyone's responses. Others can continue to post if you want through Jan 15th, at which point I'll compile the comments and see if my "project" will get off the ground. :thumbsup:

    Best, Timaca
  20. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    1. Most of what most doctors know on this topic is obsolete.
    2. Most of what we know about ME has been learnt in the last few years.
    3. A doctor is either up to date or out of date, there is no middle ground, and we can spot the out of date doctors quickly.
    ahimsa likes this.

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