While I can understand the frustration at not getting the responses
you should, I have to claim to be a do-nothing person albeit
unintentionally.
I try to keep up with all the requests and messages going back and
forth. However, because of the volume, I can't get to all of them
every single day. I'm now at 0 for 2 (I think. . .maybe there's been
more).
I missed Doc's original request for info and when I did become aware
of it, I sent it off immediately. I missed Phil's request somewhere
along the line.
In an effort to offer possible solutions rather than a gripe I would
suggest that maybe these types of requests should routinely go out
twice a week for a month to ensure that it gets seen. Or maybe one
person could coordinate the distribution of the request directly to
each person on the e-mail mailing list. Yeah, it's some extra work
but if the cause is important enough, then it's worth it. I'd even
volunteer (gulp).
I'm relatively new to this chat group and I don't want to alienate
any one. You've all been super to and for me. However, I WOULD
rather be washing the cat than getting flamed.
Thanks for the read.
Jane D.
>>> Doc <doc09(AT)sprintmail.com> 12/08 2:35 PM >>>
Phil:
I really don't understand WHY people are so disinterested in doing
something for themselves and someone else. There always appears to
be
sufficient questions being asked and complaints about physicians
being
unable to diagnose correctly as well as lengthily discussions on
constipation. As you are aware, there are slightly over 200 people
signed onto the tmic-list and as you will see in the next few days I
had
a total of 66 responses to the Questionnaire I posted in August.
Guess
people were too busy washing the cat or something that they could
not
respond in more than three months in my case and six weeks in yours.
That equated to less than 1/3 rd of all those on the list. I'm sure
there are a lot of folks out there that can/will benefit from my
survey
and the research that could be performed if adequate funding can be
found. As you said, it's difficult to convince a potential funding
source that there is a severe neurological ailment that really needs
some research when the people with the disease could care less about
helping themselves and god forbid others. I find the indifference
overwhelming. If we were asking for a $ 1,000.000.00 from each person
I
could more easily understand it, but to not take a lousy five
minutes
to write a brief letter/note or complete a questionnaire that will
help
US as well as others in the future is beyond me.
Hang in there buddy. I know fully how you must be feeling.
Doc