The Voice of Fibromyalgia

The Voice of Fibromyalgia
I had the good fortune of attending two of the National Fibromyalgia Association's (NFA) conferences held in the late 1990s and early 2000s. The NFA, which is less active now, held each year's event on the opposite coast from the previous year to allow for more attendees. The beauty of these conferences was that they benefitted both the patients and the physicians who attended. For the patients, three full days of hour-long talks were held on a wide variety of topics and treatments. They included technical discussions by researchers who presented results of their clinical trials conducted both domestically and internationally. Demonstrations of alternative treatments such as reflexology and acupuncture were also available. They gave new hope to many in attendance who were unable to find symptom relief elsewhere. Each talk was given by an expert in the field, often by a physician who had their own reason for attending the conference. You see, while patients were attending the seminars to learn how to better deal with fibromyalgia, the physicians were learning how to more effectively treat their patients who had this illness. Attendance at this conference was also fulfilling their Continuing Medical Education requirement, as outlined by the state where they practiced. Having these activities take place at the same time and in the same location was pure genius. Having both the medical community and the fibromyalgia patients assembled at one time and in one place brought additional benefits. Because everyone was there to focus on a single topic, it was not uncommon for small discussion groups to form spontaneously. Patients learned as much from these informal conversations with each other as they did from the seminars they attended. And because the healthcare
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One comment

  1. Trish says:

    I 100% agree with you! Our voices must be heard in order for the medical community to both better understand our many seemingly disjointed symptoms, as well as our own individual methods of dealing with this condition.
    Medical doctors who treat this condition must, I mean must, have empathy and compassion when dealing with us. We deal with being disbelieved and ignored by our spouses, families and friends due to their lack of empathy … I just do not understand why people think we would fake this hell.
    I am learning tricks of my own and also how to face FM in a world that continues to disbelieve me.

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