International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

Discussion in 'Other Health News and Research' started by AndyPR, Oct 6, 2017.

  1. AndyPR

    AndyPR Senior Member
  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Wow, that was quite a story! The fact that it took them so long to figure it out, with both parents being physicians, is very telling of the limited knowledge and point of view of individual practitioners. It the Parents thought it was PANS or PANDAS, why didn’t they bring their daughter to an expert sooner?

    The article presents PANS/PANDAS as having gotten a permanent black eye by a vocal group of neurologists who disagreed, and, oh, by the way, they had financial ties to a pharmaceutical company that stood to lose money if treatment approaches changed.

    Interesting parallels of infection, followed by unrelenting symptoms, possible autoimmunity, and response to IVIG and Rituxan. I wonder if if Research into PANS/PANDAS and ME/CFS could yeild reciprocal benefits?

    I’m glad this poor girl is back to normal. Hope relapse is not part of PANS.
  3. Vojta

    Vojta Senior Member

    Czech Republic
    I did get positive test result for Cunningham panel (test for PANS/PANDAS) as some others on PR who did this test as adults. And with all the suspicions that there is some autoantibody involved in ME/CFS too it seems likely there could be paralel in causality infection>autoimmunity. It's even possible that those diseases overlap in some patients when there are more autoantibodies that you develope later during disease (suspectibility to autoimmunity due do immune dysfunction caused by CFS?).
  4. Cheshire

    Cheshire Senior Member

    This advise is so dumb and insane, be it for an organic or a psychiatric problem. People with distressing psychiatric symptoms don't "do" that just because they're drama queen
  5. slysaint

    slysaint Senior Member

    "Now open to the possibility of PANS, hospital physicians agreed to treat her with intravenous immunoglobulin, or IVIG. Derived from the plasma of over a thousand donors, IVIG is used to treat a number of serious and life threatening medical conditions, including PANS. Sophia also underwent plasmapheresis, a procedure in which the plasma is separated from the blood cells, treated to remove auto-antibodies that may be attacking the body, and then returned to the body. Next she received Rituximab, a medication that halts autoimmune disorders by targeting and destroying B-cells, a type of blood cell responsible for antibody production."

  6. pattismith

    pattismith Senior Member

    One more hysteria conversion club members....:meh:

    i wonder why they only mention children, adults can be concerned as well !:thumbsup:

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