I gathered any e mails I could find from a list being worked on
informally for the Chronic Fatigue Syndrome Advisory Committee
(CFSAC) a group that meets twice a year in Washington DC. I added
those that I had in a database. At some point, all of you offered
help for people with CFS and FM and perhaps ME.
PLEASE excuse the mass e mail, but I have no other way to communicate
across the county about an urgent matter involving a kid in North
Carolina who has now been in foster care for about 3 months. I do not
want to attach any documents here, the letters a group of us have
sent to the Governor of NC, any court documents or other important
information because I expect about 50% of these e mails to bounce.
Once I determine the addresses that work, I can get back to you. The
issue is two fold. When something important happens, a thing that may
effect every single person with FM or CFS or ME, we have to find ways
to communicate and this makes our community grow. In this case it is
about a child I have been following for 5 years. I never thought,
never thought, that the parents would be accused of medical abuse
when they have been adamant about their son's medical care. However,
once the child did get a CFS diagnosis, problems escalated and doors
closed. We all know about this because we have lived though it. We
find windows, but we are adults and may have learned how to manage.
In this case, the kid is not only sick every day, but now sits in a
foster home while the adults try to prove that mom and dad are guilty
of "Factitious Disorder by Proxy."
WELL, as you might imagine, I have much to say about this and a lot
of documentation, so right now I have said enough. Once I determine
who really gets this e mail, I will narrow my search. 14 or more
groups have signed onto a letter and even more people as individuals,
so we are in the middle of a huge effort to inform people nationally.
If you know of a group in your area, would you please forward this e
mail? Again, my apologies, if you get this e mail in error or find it
twice in your in box.
Thanks for your time and I hope you are doing okay,
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