1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
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Children and ME

Discussion in 'Action Alerts and Advocacy' started by Jill McLaughlin, Nov 17, 2011.

  1. Jill McLaughlin

    Jill McLaughlin *****

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    For children with ME, a CFS diagnosis can be disastrous. Not only does the general public not get it, but if you look at the various department of social services guidelines for recognizing abuse and neglect, it includes many of the symptoms associated with or even used to define CFS. Major red flags are fatigue, sleepiness in class, tardiness, decreased or erratic attendance.

    All you need is one over anxious teacher to misinterpret and parents have little recourse. It happens way too frequently. There are few pediatricians who understand ME so it is difficult to find support or backup. Many CDC studies on children have shown adverse events as predictors or strongly associated with CFS. Many pediatric CFS studies focus on psychological factors. Children may be forcibly subjected to inappropriate or harmful treatments and forced to attend school, which can cause a great deal of damage, sometimes permanent.

    Or children may be taken into State custody. Where are the true psychologists or psychiatrists, who should see not only the physical harm but the stress and emotional damage that this could do, and how it could severely exacerbate the illness. Where are those who should be protecting them by doing everything possible to prevent this from occurring. No one who cares about children should allow kids with ME to be diagnosed with CFS or allow any connection or combination of them as this proposal to NCHS would do.

    STOP THE OFFICIAL ELIMINATION OF ME AS A DIAGNOSIS BY COMBINING IT WITH CFS VIA ICD CODING AS PROPOSED BY THE COALITION 4 ME/CFS!
    To oppose this proposal, contact: NCHS <nchsicd9CM@cdc.gov>,
    Donna Pickett <dfp4@cdc.gov>
    ASAP!
    Deadline is Tomorrow, Nov 18.
     

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