Was anyone getting better/Theresa/Advocacy

[Guest guest]

There is an organization to help PWCS called CFIDSers which awards gr=

ants for financial emergencies. Run by " Doc Elaine " . Always strapped for cas=

h. Don't know website. =

Also, this very day is a meeting in Washington D.C. of the CFSCC, a go=

vernment advisory committee supposed to speak for patients for recommendatio=

ns to Satcher/Shalala. They've been sharply criticised by advocates and the(=

govt) GAO report for not following their mandate and accomplishing little. H=

owever, quite a few patients, some quite ill,travelled to testify to this co=

mmitee today. Others of us submitted written testimony. Each is allowed 5 mi=

nutes on 2 topics A) Social Services Insensitive medical care. This will=

include pleas to address unique and dire needs of PWCS in the areas of hou=

sing, transportation, food, disability, and of course medical care. =

This follows a 2 day confer=

ence at the NIH on the " State of the Science " SOS of CFIDS research. Suppose=

d to identify the most promising areas to fund research. =

There will be reports and discussions o=

f both meetings on several advocacy lists---already trickling in and I'm sur=

e, in all CFIDS publications and various CFIDS and govt websites.CFS news, N=

CF, R.E.S.C.I.N.D, CAA. All from various viewpoints, and some including live=

ly/heated debate among advocates. =

It appears that there may also be audio tapes available which w=

ill be a first, I think. =

For those wishing to follow or participate in the Follow-up discussions =

or other advocacy or research issues, these are the 3 lists I am aware of:

ResActegroups =

cfsadvocacyegroups =

ME-activism@egr=

oups.com Katrina =

Theresa wrote: =

Re:   Anyone getting better.. Aloha! When I live=

d in Los Angeles, I knew two people who had said they'd both totally recover=

ed.   One was a female patient of Dr. Cheney's and the othher was a male who=

said that the Chinese herbalist he'd been to had greatly helped him.   when=

I last spoke to him (the PWC) several years ago, he was working out at the =

gym every day.I had been spending about $500/mo on vitamins and supplements,=

but I've had to cut way back due to my financial situation.   I also think =

that I might have recovered, or at least gotten much better, except for life=

circumstances.   There have been numerous deaths in my immediate family, di=

vorce, other family illnesses, unemployment, etc., in the last 15 years.   E=

very time I seem to be getting better, some other catastrophe seems to strik=

e, and I know that the stress just wipes me out.This is a bit off the subjec=

t, but I would like for some sort of CFS organization to seriously address i=

tself to the practical issues facing those of us who can't work and whose fi=

nancial resources are almost gone. I think some creative thinking and fundra=

ising might be helpful (I was, in my former life, a fund developer for major=

non-profits).   I know we need research, but in the meantime even those of =

us who have shunned the idea of suicide and who keep trying to think positiv=

e, are having a hard time figuring out how to continue living.There are also=

those of us whose cognitive functions have improved enough to be able to do=

more reading/writing, etc., but who are not of a scientific bent and find i=

t impossible to follow all the technical writings on treatments, tests, etc.=

   I try, but just can't understand/remember the stuff.I do remain hopeful, =

however. But I wonder if there isn't a tendency for those of us who get bett=

er to go on with our lives and " forget " about CFS. I know that if I fully re=

covered, I'd have a very strong desire to never think about this illness aga=

in..If I'm wrong about this, please let me know.Theresa in Honolulu