#8- Your ME/CFS "Push/Crash" Cycle

Many folks Just don't seem "to get" this
VERY IMPORTANT Lesson on HOW to
get a Grip on your personal version
of ME/CFS.

After having lived with this illness for
22 years now, I have lived thru this
cycle MANY times, have Relapsed many
times, and have been given the
Opportunity to "Get It" MANY times.
So I can NOT "stress" Enough to you
The true Value of Learning This Lesson
as EARLY as Possible... it will Help you
in the Long-run...OK?

Please read this  article and Believe
what they say.... They speak The TRUTH.
I am NOT trying to Promote their Products.
However I DO subscribe to their Newsletter
as they have many good articles....

May I suggest that you DO the 50/50
list and FOLLOW it... Please...
I do not want to quote all of their
article as I do not want to be accused
of plagarism, so please read it for
yourself and know from the many
I have been in contact with, they all
basically confirm what this article says..

May this be you chance to Live & Learn
HOW to live with you ME/CFS and not
Hate it everyday or let that Hate
consume you....Please..

Happy reading & LEARNING ♥

Your Push/Crash Cycle

..and may this lesson help you
either enjoy a Better winter or summer
depending on "Where in the ME/CFS world"
you literally are ;-)

I will leave the FM readers to
either write their blog or comment here
to let us know if they also have
experienced this SAME issue..OK?
I would also like to hear other
ME/CFS bloggers write about this
issue so we could see how others
respond or have lived this cycle,
OR you may ALL simply comment HERE
in case you don't want to write a
blog about this, OK...
I would be Happy to receive your feedback.

Give yourself THIS present "Before"
the coming Holidays....

#7 Dr. Donnica Moore on ------- ⇆ "GMA" for CFS

Dr. Donnica Moore, women's health expert, 
featured CFS on ABC's GMA  aka 
"Good Morning America" last Friday. 

BRAVO, excellent interview and she 
REALLY finally got across info about 
the P.E.M. that differentiates us from 
"normal fatigue." So please listen to this 
interview and imagine yourself with this 
for 22 years and NO treatment yet 
because the CDC has been using a 
Wrong "Outdated Definition" of your 
illness. And How would you get ALL of 
these tests needed for the 
"Diagnosis By Exclusion" if you couldn't 
work and had NO Health Care, 
because you NOW had a Pre-existing 
condition.

Also she made it CLEAR that ALL of
us "have to have HAD" this for at least
6 months to even "Qualify" for the 
Diagnosis.. so NOT just "normal tired."


How would you feel?

Many  of us HAVE worked HARD
to NOT be depressed OR Give Up..
and to Work Harder now to have OUR
28 million Voices to be Heard.

I have managed to NOT get 
depressed by not only using CBT.
I did the Cognitive Behavioral Therapy
Before it was EVER even called that 
as just a person that wants to LIVE 
as a Positive person and NOT be "defined 
by my illness".. I have an illness
BUT it is NOT "me"...
Can you understand the difference?
Like I have a broken arm but 
I AM not MY broken Arm.


Also by taking 5HTP to helps as it 
is a pre-cusrsor for Seratonin
in the brain, and I personally do NOT 
want all of the negative side effects 
that being on a synthetic anti-depressant
can cause.

Actually one Dr. had put me on one
for a Secondary different issue,
and my current Dr. too me OFF it
so as, NOT to cause Heart problems
and the 5HTP works just FINE
naturally, and the original issue has
not flared up again.


Yes, I have noticed that there seems
to be 2 Groups, an older group and 
those that get it at a younger age,
However, the path seems to be the 
same with same progressions...
It just seems to suck at different ends
of the age spectrum, as the older ones
have already "HAD" some life lived
and the younger one are getting hit 
HARD cuz they are trying to complete 
school either primary grade school
or even high school/middle school.


Either way, the family & Support Group, 
be it friends or family play a HUGE part
in helping the patient get thru the 
replapses. If you don't have anyone 
then Support Groups or even fellow
ME/CFS patients on Twitter & FB
are building to be "chosen family"and 
helping us all cope with this nasty bugger 
that robs our energy aka mitochondria 
in the cells that produce the energy for 
each cell to function. Think of it as your 
car has NO fuel to help it GO.
We are constantly barraged with try 
this supplement, try this treatment, 
or this one...
All the while, as we have NO income 
or are draining family accounts during 
these hard financial times... or these
tests "already HAVE" drained accounts.



So next time someone tells you 
they have ME/CFS PLEASE know
that it is NOT "just tired."
It is REAL and TOTALLY DIFFERENT."
..and Please have a little Compassion.
Treat them as YOU would want to be
treated...with Respect.


View the clip at

http://abcnews.go.com/Video/playerIndex?id=8664151

And Again---> & BRAVO to Dr. Doonica Moore 
and a BIG Thank YOU for helping to 
Raise Awareness for us... 

#6- next CFSAC meeting ................... ⇆ Oct 29 & 30th, 2009

The next Chronic Fatigue Syndrome Advisory

Committee (CFSAC) meeting will be held on

Thursday, October 29 and Friday,

October 30, 2009, from 9:00am-5:00pm EDT.

Please link to

http://edocket.access.gpo.gov/2009/pdf/E9-21334.pdf

to access the Federal Register Notice.
If you would like to submit a request for

public comment at the meeting or provide

written testimony, please send an email

to cfsac@hhs.gov.   

Due to the number of requests, 

public comment is limited to 5 minutes 

per person and appointed times for 

public comment will be provided on a 

first come-first serve basis.  

Written testimony is limited to  

five (5) pages and must be submitted 

prior to close of business on 

Thursday, October 15, 2009.

The proceedings of the meeting will be 

accessible via videocast.  

More information will be posted on 

the CFSAC website at  

http://www.hhs .gov/advcomcfs/.

#5- Like I said, I've been diagnosed OUT of the system

In a message dated 9/23/2009 2:53:07 P.M. 
PDT, GAILRONDA@AOL.COM writes:

In response to a letter and e-mail that the National CFIDS Foundation  sent to the Centers for Disease Control and Prevention (CDC), a call was  received from Sarah Wiley, the Associate Director of Policy at the center that  houses the CFS program.  The posting that had our name as one of the organizations that provided input into the CFS 5-Year Strategic Plan will be removed sometime today, she said..  

We also discussed that the CDC is not addressing Myalgic Encephalomyelitis (ME) and she understood that was "a bigger concern" and she hopes to address that eventually. 

(The CDC stated, in their "Overview of CFS" that neither CFIDS nor ME should be confused with ME and the National CFIDS Foundation is referring to ME with their name of CFIDS. Currently, it has no diagnostic code in the United States making the diagnosis of ME impossible in this country.)

For better health for all those with CFIDS/ME,

Gail Kansky

President, National CFIDS Foundation, Inc.

103 Aletha Rd.

Needham, MA 02492-3931

781-449-3535 

http://www.NCF-NET.org
(http://www.NCF-NET.org) 

#4- Rude Humans (Dr's) abound & bloggers

Well, TODAY I was "directly told" the RUDEST
comment yet... just proved again to me that
age has Nothing to do with maturity or sex.
To my benefit, I did NOT even waste one bit
of adrenaline on this person's insulting RUDE
comment... so for THAT I am Proud that I am
learning NOT to let my buttons get "pushed"
by ignorant comments and I am learning HOW
to Respond and NOT reAct to comments.
Obviously, this time it was "All in Their HEAD."

A person that has known me on a semi-pro
level for 5 years and knows the high level
of energy that I use to put into "one" of the
forums I run, probably has a "low functional
pre-frontal cortex" because of the comment
they made "out of the Blue" to me..after
even admitting that they were in pain and
on constant anti-inflammatory meds...

Some one you would THINK would have
a little compassion & tolerance for others
with any other medical challenges..but NO
this other human? made a crass comment
to me and said, " If you were a 
dog I would have you 
put down." 

Yes, you heard me correctly, and that
is a Direct Quote. Do you believe that?
And it has been a calm, nice , civil
conversation until that came flying out.

Gladly this person is NOT a counselor.
Unfortunately, this person IS in the 
Medical Profession... Believe it folks !
... and you wonder WHY I made the
previous comments I did... and we were
NOT even discussing ME/CFS but
drug manufacturers and how some
meds were being discontinued.

a Human Life and a Brain are a
Terrible thing to waste...
Human Life should be Respected and
Esp by someone that has taken an Oath
to "Do NO HARM." Obviously, THAT
comment was NOT meant to Help, was it?

Thank God/Goddess/Buddha/Gaia/Great spirit
whomever your God of Choice is ..
That THIS person is NOT your Dr.
But if THIS is the mentality of just
"one dr" that was not even my Dr and
I was NOT asking for any Medical Advise
can You SEE the LACK of Medical 
Knowledge that we are facing here folks?
Thank YOU~ AMA + CDC ....you are doing a 
bang-up job of education for the 
medical profession.....NOT.
 

I am SO GLAD that I am getting better
at releasing any ill feelings towards
the lack of ignorance, which BTW can
be cured..if there is a Will to...
However Studpidity Has NO cure...
Obviously, someone that would make 
that sort of comment should NOT be 
IN the Medical Profession, Period.
That's all I have to say about it.

Welcome ME/CFS and FM bloggers.
I welcome all ME/CFS bloggers to
contact me if they wish me to add their
blog here OR if you know of any medical
articles you feel I should list here
for others to have access to Read & Learn.
As many people that have ME/CFS
also have FMS I am going  to start
a blog list on the Right side here,
of Bloggers that have FM so they can
have the exposure/Respect that they
also deserve.


May you Walk with your Head HIGH and 
may you show Respect for ALL Humankind.

#3 Bio - about me Cont'd

It is at the point where the Patients are NOW
educating the Dr's.. ta Heck with whether you even
HAVE "medical insurance" what good does it DO
if the Dr's have NO Idea what you have?
They look at you like
"IAIYH" aka "It's All In Your Head."

Turns out there was a Big Outbreak of this same
thing up near Lake Tahoe (Incline Village) in the
mid-1980's and the medical community "took notice"
and sent researchers from "Around the World".

Over the course of a few days they took "Histories"
from all of the patients and "en masse" they
DECLARED that what they HAD was called
ME=myalgic encephalomyelitis.

But then... since this WAS in the USA
the CDC finally showed up late, as usual,
and did their questioning and at the end of
their process declared that EVERYONE of the other
Medical Organizations WAS WRONG and they
decided to re-name this illness with a
"made-up name" that ONLY labeled it
"by ONE of the symptoms."

(sub-text: one belief is that since this was
occurring at about the same time as the
"new" discovery of AIDS, the CDC did not
want everyone panicking that there were
2 epidemics going on at the same time.)

HOW STUPID can you get? So now this
World Disease of which there are 28 million
called ME, in the USA is called
"Chronic Fatigue Syndrome" among a few
other similar names. That's like saying one of your
symptoms is chest pain so we'll call your illness
"Chest Pain Syndrome" but forget about the
Heart Attack you just hard and ignore all of the
things that caused it, and we will move like
"Molasses in Winter" in trying to do any Research
for it...and Hello it has been 25 years now since
this outbreak. Can you say 28million equals
an Epidemic?

There are NOW many Worldwide orgs. researching
for ME, but the CDC and USA are lagging WAY
behind, just like we have in the Research for
Stem Cells in the last 8 years.. where the rest of
the world has been doing stem cell research for the
last 18 years.

There are ONLY 2 Dr's that were UP at
Incline Village that have continued to Follow this
illness and done their OWN Research..
Dr. Cheney & Dr Peterson.

Dr. Cheney has now just finished a year of
NEW Research and is finding that for
long standing cases the only thing that finally Helps
because of all the damage done to our
entire systems + organs over the 20+ years is
Stem Cell implants http://cheneyclinic.com
Due to the lack of Stem Cell Implant locations in
the USA and the FDA lack of support for them,
he is forced to take patients abroad for treatments.
How stupid is that CDC?
"Get Your Act Together" PLEASE.

Dr Peterson has partnered with a backer and has
formed the WPI = Whittmore Peterson Institute
http://wpinstitute.org on the campus of the
University of Reno, NV., "WPI for
Neuro Immune Disease exists to bring discovery,
knowledge, and effective treatments to patients with
illnesses that are caused by acquired dysregulation
of both the immune system and the nervous system,
often resulting in life long disease and disability.”

I give MUCH Praise and Thanks to these 2 Pioneering
Dr's that have the Conviction to Continue doing the
Research that the CDC is dragging their feet on..

So that's ONLY Part of my back-story..
I will add other articles and past & current attempts
on this blog of my Attempt to "StandUP2ME"

cuz Hello CDC ~
"CFS" is NOT what I or the rest of the 4 million
in the USA have. So because of the CDC"s definition
of this illness we have been described "out of having"
what we DO have , and cuz we don't live OUTside the
USA we can't get the Correct Diagnosis of ME,
so "we can NOT get" any other Dr's or Courts to
acknowledge "What we DO have" or
Help us in any way..Medically, Emotionally, Financially,
Supportive in-home Services, online training for Help
to get trained to even DO some job online from Home
so we can support ourselves, we & those that
"Have Families" are left to fend for ourselves..

It's REALLY Embarrassing that this Great Country
not only does NOT have any kind of
Universal Medical Coverage for ALL, but that they let
the CDC & FDA be pawns and NOT "work FOR the People"
of this country like they should Properly be doing..
to be continued as long as
I am Alive..

#2 a small, yet BIG "PR" Victory

As ONE of the Main challenges of this illness has been
not ONLY the ignorance and lack of attention that the
Federally Appointed Research Agency in the USA has
given the 4 million & growing patients with this illness,
but the “Public Awareness” of the Reality of the
Seriousness of this disease… EVER since the CDC gave
it their “made-up ONE symptom ONLY nickname” and
that name has brought additional pain of mental &
emotional abuse to it’s Sufferers as the the Medical
Community the Public had even nicknamed it
“the yuppie flu” and for years thought it was
“all in our heads.” So we have not ONLY been Seriously
ILL but have been Victimized by our own County &
Public. Even after ensuing years the CDC was found
using OUR Research money for other purposes, so
they were mandated to run a Publicity Blitz Campaign
notifying Dr’s & with public ads telling them that
CFS was a REAL &  a Serious illness…but, the year's
of damage had already been done and their PR was
too little too late, as their ads said to "go to a Dr
& get Diagnosed," BUT they had NOT done the
required Research or even Educated the Dr’s about it
therefore..we all say LOUDLY ——> Enough is Enough.

Thanks to the internet and the invention of laptops,
although we are bedridden we are now becoming an
Army of 28 million that ARE Speaking UP for
Ourselves (& our families/caregivers if we have them)
even tho many (not all) Live “literally” in the dark, and
can not tolerate very much sound or speak loudly..
So we have started some online campaigns and are
blogging and using Twitter and Facebook and any tool
we can find to Help Educate the Public and
Raise Awareness of this too-long ignored Serious
illness… ---> 28 million “Voices 4 a Cure”.

We don’t have any Michael J. Fox like Parkinson’s does
to speak UP for us.. The closest we have is
Laura Hillenbrand that wrote the book that
became the movie.. “Seabiscuit” about the race horse.
I also have heard that well known Buddhist monk,
Pema Chodron, also has this illness. I now know of
others and will list them on the Right.. Anyone that
“actually recovers” from some fatigue illness did
NOT have ME/CFS, they had something else…OK?
If you truly have ME/CFS you “learn” how
"to Live with it” then you DIE. period.

The ONLY thing that has been shown to Help the
TRUE ME/CFS is the work, so far, of Dr. Cheney.

There are a "handful" other Dr’s that have also been
doing research, and are treating other things they
believe are causes of ME/CFS whom I will name later.

So what’s our little/BIG PR victory you ask…. ???
For the last 5 years Oprah has had a Cardio-Thorastic
surgeon Dr. Mahmet Oz on her TV show..
He NOW has started his own TV daily show that
just went LIVE last week. He is a Very Smart
Compassionate human being.. One of the kind that
Lives by “the more you know the more you don’t know”
and is continually educating himself AND the public…
For That I RESPECT him Very much..
He does not hide his head and “play Ostrich” like the
rest of the medical community. He lives on the
cutting edge and is honestly trying to make a
difference helping to educate the public in a way
that the Majority of the medical community has
NOT done up to this point. Having worked in a
hospital for 17 years, and I also worked in Cardiology
for awhile, I can speak with a little knowledge.

To get to the point.. ever since we found out that
Dr Oz had a Twitter Account the online ME/CFS
patient army has been sending him Tweets to
Raise HIS Awareness of our Cause..
Many online medical forums/blogs do NOT even
to this day, after all of these 25 years, even list
ME or CFS in their list of diseases.
I checked the Dr Oz TV website and we “already”
have a category and I believe he has reached out
to the medical world with inquiries for input and is
getting replies from them that he is posting…
I checked yesterday and he had 3 replies, by last
night they had added a 4th one..

So KUDOS to the Online Twitter #MECFS Community
and to DrOz♥ for Helping to Raise Awareness♥ And
Thank You Dr Oz for listing us and doing some
research into this illness and giving us the space
on your website to help Inform the Public that
we are NOT just a yuppie flu but a serious illness,
that needs attention.

We will continue to educate Dr Oz and hope that he
will also continue sending out his inquiries to help
find answers for us.. as this disease eventually
effects our hearts and he is a Cardiologist I was
hoping this issue would catch his attention.
May our relationship GROW to the point that
“someday soon” he will possibly even have
a segment about ME/CFS on his actual TV show..
and may he Grow to Learn that TRUE CFS is Really
M.E., that Apples are Apples and Bring some Sanity
to this LONG Misunderstood illness, not only in the
world but especially in the USA. That is one of the
reason’s that my Twitter name is ME_CFS_unite..
Hoping to Raise that Awareness that they ARE the
same and to unite all of us that have been SO
Poorly Supported so we could at least
“feel supported” by each other around the world.
I Tweet almost daily with other ME/CFS/FM folks
from across the USA, Canada, the U.K., Denmark,
Belgium, New Zealand, and Australia.

Color me Happy for one day at least and can you
see me smiling in the dark?

Dr Oz ME/CFS page

#1 Brief Intro

Just a brief note to start with:
Here I will attempt to recall the past 22 years of
having ME/CFS and the things along my Journey
that have Inspired me and kept me going and
also the pitfalls and relapses that were roadblocks
to my recovery. As they say, “It is what it is” and
I can only know that I DO always try to look for
the Silver Lining in the Journey not knowing why
this path was chosen for me.