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Updating early onset ME/CFS list

Discussion in 'Action Alerts and Advocacy' started by Denise, Mar 26, 2012.

  1. Denise

    Denise Senior Member

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    I am again updating the early onset ME/CFS list.

    Please spread the word

    If you came down with ME/CFS before age 23, contact speakupaboutme@gmail.com.

    Provide
    name (let me know if I should only use your first name or a nickname that you provide),
    age at onset,
    age at diagnosis,
    current age,
    location (country is sufficient).

    (Note - In providing this information, you grant permission for me to use this list as I see fit. Example showing the CDC, NIH, DHHS, CFSAC, media, etc. how many patients with early onset ME/CFS there are.)
     
  2. Merry

    Merry Senior Member

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    Columbus, Ohio, USA
    Done. Thank you, Denise.
     
  3. Denise

    Denise Senior Member

    Messages:
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    570
    Thank you Merry.
     
  4. taniaaust1

    taniaaust1

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    Sth Australia
    Hi... can we add family members to this list if they are without diagnoses still due to ignorant doctors?

    I have a cousin on disability who was 17 years when she got this illness and she has all the same symptoms as I do, but hasnt got an actual name for her illness as her doctors dont believe in ME/CFS and she's taken her doctors stance and hence thinks ME/CFS psychological illness, so thinks she cant have it either as they believe her illness whatever it is, is "real".

    There's probably many out there in which it is known that they have this illness and completely disabled by it but they are remaining undiagnosed, due to their trust in doctors who dont have a clue about our illness.

    Maybe this age group is less likely to get a diagnoses due to their age of which the illness occurs.
     

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