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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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It's International CFIDS/ME/FIBRO Awareness Day!

creekfeet

Sockfeet
Messages
553
Location
Eastern High Sierra
Don't forget to rock some socks. I'm wiped out but I think I'll get out my pastels later and make a little sketch of my idea for my sock. One step closer to actually creating it.
 

spindrift

Plays With Voodoo Dollies
Messages
286
Wow Q & A with Dr. Judy Mikovits and Dr. David Bell. How cool is that! I just love Dr. Bell and Judy of course too.
 

leelaplay

member
Messages
1,576
a message from the founder of May 12 awareness day

Thomas Hennessy jr. to CO-CURE May 12 (3 days ago)

[sb/if: I just found this. I am still so ignorant about the history of this disease. I had never heard of Thomas Hennessy before.]

Greetings Boys and Girls, Ladies and Germs,

Today is the 18th anniversary of May 12th, International Awareness day for
CIND (Chronic Immunological and Neurological Diseases) We included
ME/CFS, GWS, FMS, and MCSS that first year. Over the years we have added
other CIND disorders as they became known including tick borne illnesses
such as Lyme Disease, Bartonella,Babesia, and other viruses, bacteria,
microbes, chemical insults, and other toxins as they are discovered like
XMRV. The most important words in this note are the following two: THANK
YOU!!! [?]

Thank YOU to one and all who crawled out of bed to help in any way for us to
get to an 18th anniversary! A special thanks to Roger Burns for keeping us
online for the first decade, and Jerome Greyson for keeping us online for
the second decade. And to my parents, my friend's Michael and Patrick, and
Robert who helped pay rent, and all those who fed me over the past 25 years.
Thanks to anyone who wrote or called their local, regional, or national
politicians. Thank you also to any spouse, sibling, neighbor, or friend who
helped to care for those of us who are too sick to care for themselves. It
might sound odd, but hand written, personal notes to our politicians,
newsmakers, and editorial boards of newspapers are sometimes the most
effective help you can give us.

As most of you know, since the medical experts have not been able to isolate
a single virus, bacteria, or chemical insult that triggers our descent into
this "Living Hell", most of us with diagnoses of FMS, M.E, CFS, GWS, and
MCSS, which i called Chronic Immunological and Neurological Disorders (CIND)
back in 1991 have to rely on lists of symptoms to get diagnosed. For all you
newbies out there, make SURE you keep good records of these lists. And take
those lists to the various doctors you will see before you get a proper
diagnosis. Then still keep those lists of symptoms and tests taken in a big
box, because you will need them to help win a disability case. Sadly, at
least in the USA, 90% of people who become disabled, are rejected the first
time they apply for permanent disability. About 75% are rejected on the
second application. And even when you go before a judge, (called the
Administrative Law Judge or ALJ) you only have a 50/50 chance of winning
disability. If some of you are healthy, Please google Ms. Lennie Copeland.
She was the brains behind "Living Hell", the best documentary yet produced
about people with M.E. and CFS. She lived in the bay area of San Francisco,
the last i heard. Her brother played drums in a little band by the name of
the "the Police". a copy of that should be put up on You tube!

Because i am personally so ill, i have not been able to get it together to
write up lists of things that have worked over the years..It really is
stunning to hear so called "experts" of the Weaselly school describing
various and sundry "somatic" symptoms that allegedly have no known medical
cause. He has done the same with the so called "Gulf War Syndrome" (now
called Gulf War Illnesses). In reality,it is the incompetence of the
medical establishment and NOT our fertile imaginations that are keeping us
sick. I have read more than 21,000 emails, letters, notes, treatises,
medical articles, and internet postings, and probably met more than 1,000
"sufferers" of these various disorders at medical conference across the USA
and at government meetings over the past 25 years, and to be honest, their
stories, with very few exceptioms, or outliers, don't vary by more than
10%,.. 15% at the most. I believe that the great Dr. Melvin Ramsey wrote the
best sentence ever to describe the misery of M.E. when He said,

"The degree of physical incapacity varies greatly, but the dominant clinical
feature of profound fatigue is directly related to the length of time the
patient persists in physical efforts after its onset: put in another way,
those patients who are given a period of enforced rest from the onset have
the best prognosis".

(of Course, this is exactly the opposite of what actually happens in the
U.S. and what our overworked, overwhelmed, and undertrained Doctors
recommend. When most of them are ignorant about CIND (Chronic Immunological
and Neurological Disorders) such as M.E., CFS, MCSS, FMS, GWS, and Tick
borne illnesses like Lyme, Babesia, Bartonella, Brucellosis, Giardia, EBV,
HHV6, XMRV, etc.) I can assure you that C.B.T. (Cognitive Behavioural
Therapy) and G.E.T. (Graded Exercise Therapy) might help some people, some
of the time, but they are NOT the answers to the vast majority of people who
have been SO ill, that they are homebound or bedbound for six consecutive
Months or more. 25 years ago, we were listed as having the "Yuppie Flu"
because many of us were hard charging types who spent our life savings
trying to find something, anything that could be so vicious, that it could
completely ruin our lives.

If you had most ANY other serious illness and waited until you were bedbound
for six months, i could diagnose you in 4 simple letters. D.E.A.D! It is
incomprehensible to me, that the medical establishments of the world would
accept for more than 2 decades, such stunningly incompetent work product as
the so-called Holmes -1988, Fukuda 1994, and Willy Wonka Reeves -2005
'definitions' of something that doesn't really exist. the mysterious
"Chronic fatigue syndrome". back on April 15, 1989, I gave my first public
speech about "CFS". I said that Webster's dictionary says that to "define is
to make clear and distinct, to differentiate". Then they proceed to list a
bunch of symptoms that any ill person could have. If you want to look at a
definition for the alleged "CFS", look at the Canadian Consensus Definition
from Carruthers, et al. And if you want to find an accurate definition of
Myalgic Encephalomyelitis, then google Byron Hyde,MD, of the Nightingale
Foundation. It was Byron who told me about Florence Nightingale. When i
researched the history of our little Ms. Flo, she sounded like MANY of the
nurses i have met with M.E. over the years. When i found out that her
birthday was in the springtime in the northern hemisphere, and early autumn
in the southern hemisphere, I said, "We have found our day". Since i was
already considered a "burr under the saddle" of the medical establishment, i
used the words "May 12th was chosen" and i kept my name OUT of it.



However, Today is May 12th!
To all who are still on the right side of the grass, I say Congratulations!
Send a friend to the library and ask the librarian to order a copy of
"Osler's Web"
by the great Hillary Johnson. She has a new, and updated edition out. then
Read it!
This book details the struggle of so many of us over the past 25 years.
The original editor of this book also edited "And the Band Played On" By
Randy Shilts,
a famous AIDS activist back in the 1980's. He said, "I never thought i would
say this,
but you people (meaning CFS patients) were treated worse than WE were!"
(meaning AIDS patients,
who were spat upon, denied medical treatment, thrown out of their homes,
denied fair insurance settlements and more)UNTIL, some brilliant researchers
isolated HIV, a retrovirus, that crippled, but did not kill it's victims.
However, HIV weakened the host soo much that, other opportunistic infections
killed the patient.

With M.E. and related disorders, we are often worse off. Even with the
discovery of XMRV, I personally do not
believe that any one virus, bacteria or toxin is causing all of this misery.
the famed virus hunter, Louis Pasteur
once said, "The antigen is Nothing. The Terrain is everything!" I think we
are all stuck in a case of "different insult, same result". this is BAD news
for insurance companies. If they were forced to pay fair settlements to all
of us who are too sick to work, but just not quite sick enough to die, they
would go bankrupt. Most of these big, multinational Insurance companies have
gambled their clients' premiums for the past decade on esoteric financial
instruments called CDO's. These Financial "instruments of mass destruction"
as Warren Buffett calls them have wiped out the profits of the big insurance
companies. They even wiped out the equity of AIG, one of the largest
Insurance companies ever created. And Places like UNUM/Provident Insurance
do not have the funds to pay fair disability claims for us. So, they try to
obfuscate the truth, and delay and deny paying just claims. They are aided
and abetted by incompetent and underfunded wags at the CDC and NIH. and We
pay the price.

Things are changing however. The Whittemore/Peterson Institute has ruffled
the feathers of many in the medical establishment by teaming up with the
renowned Cleveland Clinic, and some top virologists and researchers in the
country. I do know know if XMRV is a cause, or the cause of all this misery,
or a simple bystander. But it has woken up the sleeping giant.

As i said back in 1989, at the end of my speech in SF, CA. "The late Sam
Rayburn, chair of the Senate Subcommittee investigating the crimes of
Watergate, -Any damn jackass, can kick a barn down, but it takes some damn
fine carpenters to build one!' I think it is high time that we stop allowing
these jackasses from kicking our individual barns down. We need to continue
to unite, at least one day per year, and work in unison with people like the
WPI, and the upcoming NEI Institute in New Jersey, spearheaded by my friend
Marly Silverman, founder of P.A.N.D.O.R.A., and all the doctors and
researchers who believe that we are SICK and not tired. These people know
that we ARE tired of being SICK! We need to ask these carpenters to help
rebuild our lives.

So, Please go to our website at www.rescindinc.org and then scroll down to
the M.E. Petition. We have more than 8700 names on our petition. PLEASE
write a few sentences on the petition when you sign it. Ask your friends and
family to sign it as well. We need to pass the 10,000 signatures mark. Then
we can ask some healthier people to take the petition to Congress, to the
CFSCC, to the medical establishments of the world. Then Please download
Susan Wenger's excellent and prescient song about M.E. and please donate
some funds via paypal, so we can keep going for another 18 years!
Thank YOU ALL for your help over the years. This day was and is completely
patient driven.
So keep up the great work!
but remember to take care of Numero Uno!



Remember that the great philosopher Edwin Schopenhauer once said, " *All
truth goes through three stages*: first it is ridiculed: then it is
violently opposed: finally it is accepted as self evident.

Ciao for now.

Sincerely,
Tom Hennessy, jr.
Founder
RESCIND, Inc.
Creator of may 12th International Awareness Day for CIND.
RESCINDINC@gmail.com
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
All I can say is WOW..... Not much brain function here but so many years after the establishment of "Awareness Day".... so little and yet so much has happened.

Personally, I was always so independent out of necessity that it is very hard to ask for any kind of help. Those close to me want to continue to believe that I am the same person I was before.

I am paying close attention to closing remarks... "remember to take care of Numero Uno!". Not easy to do when you were taught to put everyone else before yourself.
 
Messages
59
May 12, 2011 - Awareness Day

This is the 19th year of International Awareness Day. What have people planned to raise awareness?