Dear Dr.'s Wanda Jones , Chair Chris Snell and all CFSACommittee members and attendees,
I HAD wanted to be Polite and respectful in this letter but the NIH meeting has brought out my "Outside Voice"
cuz the WE patients are ticked off and as the Movie "Network" says~ "We are Mad as Hell and are NOT going to Take it ANY MORE" Got it ? Is that Clear ?
Do you need it in a few more languages ? Is everyone putting down the blackberries long enough to even read this??
Remember you ARE on Camera and all nose-picking Will be ( and has been) observed.... Wake UP you ARE on Camera and this should NOT be another version of the World's Funniest Videos of 2011."
I had been wanting to be in a Happy Mood when I wrote this letter but after the actions of Dr.'s Coffin and Vernon at the NIH State of Knowledge Workshop, I must say I am extremely Upset and in disbelief that #1~ Dr Vernon does NOT represent us in ANY WAY and the patients do NOT want her to utter "ONE WORD" to us or ABOUT US. Period. We have even created a Petition to that effect that has already gathered many signatures..
Who died and made her the MC at the end of the meeting ? And she demonstrated her lack of courtesy when she was interrupting "what the viewing audience was seeing as a VERY Important discussion between 2 researchers"... How DARE Her ?
We have waited almost 30 years to HEAR these discussions.... Shame on Dr Vernon........... "Black Mark Given." by MANY !!!
Dr. Monroe of the CDC's "poor Joke" at the NIH about not wanting to miss his plane was NOT Lost on the patients...
Especially, since it was the CDC that shot down Elaine DeFeitas in 1990 when another Retrovirus was in the early stages of being linked with ME/CFS.
Elaine made her BLT with Best Foods Mayo and the CDC decided to use Miracle Whip> Guess what> Garbage IN Garbage OUT> Then, they claim that "they can't replicate her findings".so... . She invites them UP to her lab to watch every step she takes.. and their excuse is that "they can't afford the 2 plane tickets to get up there." PALEESE... How Lame> When they ARE the ones that have the Name" Centers for Disease CONTOL and Prevention. Did they FORGET THAT ???
Hey, CDC, Dr Monroe, How MUCH IS YOUR LIFE WORTH? A plane ticket ???
Give me a fricken break.. and for THAT we go another 20 years without Help or Treatment ?
Right now the CDC is an acronym for us that stands for "Can't Detect CR*#" = until they start acting with INTEGRITY toward their citizens... They TRULY ARE a Worldwide Embarrassment to the USA.
And I am equally dismayed and repulsed and almost made physically SICK, by Dr. Coffin's wish to discontinue all XMRV Research... How DARE He...?? A REAL Research Scientist would WANT to Keep Looking > when they already have Thousands of patients that ARE Testing Positive, either by PCR or Serology or Culture and DO have antibodies and> Hello many were sick before Dr Collins 1992 date, whatever that was about... We have been sick since the mid 1980's~ Was he NOT even listening ??? There are NOW 7 cohorts, in 7 countries that have tested XMRV+ from different labs... So his arguments are MUTE points... Maybe he needs to buy a Hearing AID> poor baby should we chip in to buy him one ??
I think NOT, he has wasted enough of our money and can't replicate anything because HIS fricken lab is the one that is contaminated..
I respected him in the beginning, but he has now lost all of our respect... Until IF and When he chooses to EARN it back...
by Continue Researching what we already Have> a retrovirus called XMRV, and starts doing the proper tests and using the proper proteins.
I don't think he had his hearing Aid ON "At ALL" during the NIH SoK unless someone other than Dr Judy was talking...
Not too much Prejudiced there, especially to have the cajones to call for Research to STOP when we are sick with it... Disgusting !!!
Maybe it is True ? That "That Takes Ovaries" and that is WHY Only Elaine DeFrietas and Annette Whittemore and now Dr Judy Mikovits been the ONLY ones to NOT worry about their cajones and have learned to Speak UP FOR THE Patients...
Which is what you, the CFSAC, SHOULD BE DOING NOW.......................................
We are getting the feeling that either:
#1) "Some of these Researchers" do NOT Care about the Truth...........Thank you Dr Coffin> aptly named I might say.....
Those that DO Care, we could Easily tell who they are and "We Thank Them Whole-Heartedly" ♥
#2) That our Government and this committee does not really care about us or the millions around the world being effected.
#3) that this government is being penny-wise and pound Foolish, because we DO want our Lived Back like Robert Miller Said and we would LOVE to be paying Taxes and helping the deficit.. but many of us because the lack of knowledge after YOUR and YES I mean ALL of YOU> is literally embarrassing and you have NOT Cared one iota about REALLY Helping us~ or you would have Meant what you have said and Done something about it !!! All we get here, until NOW, literally IS Empty Words..
Where ARE your Consciouses ? You very well KNOW How sick we are and you Demand NOTHING >>>>>>>>>>>>>>
You KNOW as Dr.'s Leonard Jason and Chris Snell pointed out Extremely Well at the NIH> that we DO HAVE
"Post Exertion Malaise".. that is a HUGE Part of what sets us apart from those that only have depression..
The Canadian Case Criteria KNOW it , We ALL Know it, Many Drs KNOW it, now its time for the CDC to KNOW it and OWN it, Period.
Was Anyone Listening ???? Did you listen about the OI/POTS parts that effects our Oxygen intake and our ability to stand UP ?? and YES>effects our hearts ??
I hereby not only request, but a an insulted 17 year hospital worker that had to quit my job because of this illness
and now cant even get Disability because it took TOO Fricken Long to get a Diagnosis, which was NOT MY Fault cuz no Doctors have been educated about us,
but I DEMAND that this committee Send a message to the CDC in their STRONGEST Language to Cease and Desist with the infantile psychobabble that they have
on their website about this illness and start acting and behaving like REAL Scientists and Take DOWN THAT "GET" junk that Physically HARMS our hearts and
many of us have already had therapy because of the abuse of our Dr's and the CDC "not believing us" for 20+ YEARS... SO THEY HAVE ALSO INFLICTED
PTSD on many of us, Yet we Fight ON, because we KNOW the Truth and the world is also learning the Truth... that the CDC and NHS are Puppets
of the Psych Dept and the Insurance companies... We have had enough of this.. and you WONDER WHY our the Health Coverage in the country sucks ?
Emory University wrote a paper A YEAR AGO about those of us infected with XMRV+ and co-infections and What Meds would help us...
Where the Bleep are these Drug Trials ??? Magic Johnson is FINE on his meds and God KNOWS you are NOT letting us have any meds to get better so we can Have our Lives back and be Functional citizens again and get jobs and Pay taxes... What are you hiding ???Who are you covering-UP ??
WHY DO YOU WANT US to be SICK ? OH, so you can carry on this charade of doing non-relevant research for another 25+ years... WRONG !!!!
Like Dr Ruscetti said a month ago... If this were HIV this would be 1983.......
Wake UP> The Band IS Playing ON......... and you are NOT getting us any help NOR cleaning the blood supply...
You should all be ashamed of yourselves that you have let this Crime against Humanity GO ON THIS LONG>...
It is now World-wide and not only within the confines of the USA.
I was was Proud working in a hospital for 17 years that REALLY Cared about their Patients like Dr Bateman does..
and like WPI and Dr Judy Mikovits do.... but I have seen NO medical ethics displayed here recently..
I have felt NO Urgency to Help those with a RETROVIRUS and co-infections Get Treatment... NOW
Shame on ALL of you>>>>>>>>>>>>>>>>>>>>
You are literally watching as Rome burns or better yet as this Holocaust plays out and kills another Generation...
We ARE on our 3rd Generation now and the Family Trees are showing up things like Lymphoma
and Autism..Breast Cancer and oh yeah > Thanks My mom died from Lymphoma and I have XMRV...
and you play your fiddles..... and yet YOU collect your pay checks..
GIVE YOUR PAYCHECKS BACK TO PAY OFF THE DEFICIT OR "DO SOMETHING TO HELP US" >NOW
YOU HAVE 2 DAYS TO GET IT RIGHT, THIS TIME... PLEASE....
EARN YOUR PAYCHECKS... Speak UP and actually DO something to get the Huge Ball Rolling to get the CDC off their Butts
and the FDA off their Butts and get us some Clinical Trials... We have "ToDo Lists" we are NOT simply depressed
like the CDC website seems to think.... That website is an atrocity...and an embarrassment to the citizens of the USA.
If they have NO Respect for us, WHY on God's Green earth should we Respect them ??
If they don't believe XMRV is Real ? are they willing to receive a transfusion of blood tainted with it ???
This ostrich game everyone is playing is getting really OLD>...Older than I am... and the World IS seeing Right thru it..
The DHHS>NIH can't Afford any Centers of Excellence> Hello> The WPI already Exists... Help them dang it !!!!
I also hereby "Officially request that the NIH Create an Additional SEP for the study of XMRV~ NOW" >
Cuz otherwise there is NO Place that Grants can be written and sent to study this,... unless they come in
a back door thru some other of the MANY co-infections and that is BS> to the Hilt...
PLEASE Tell me> HOW MANY PEOPLE BEING SICK CONSTITUTE AND EPIDEMIC OR PANDEMIC ?? NOW answer truthfully here ??? Please....
There are at least 17 million worldwide in this new 21st, Airplane bug hitch-hicking era Century and that's
ONLY including the 20% that they say HAVE been diagnosed...
How about the Millions with Lyme that are testing XMRV+ ?
How about the 25% of Breast Cancer samples that are also testing XMRV+ ?
How about those with OI/POTS and XMRV ?
How about those with NO adrenal function or Thyroid function and XMRV ?
How about those on our Family Trees that now have Autism ?
How about all of the families brought to Bankruptsy trying to care for their "sick member" ??
How about the thousands that not ONLY do not HAVE any medical coverage OR Disability,
but have NO ONE to care for them and are Bedridden ?
Is the USA ~ Really a 3rd World country again ??
That seems to be the way you treat your citizens...
Dr Jones, How much is your Life worth to you ?
Dr Snell, How would you feel if you were bedridden for YEARS but your brain STILL worked fine ?
Where are the "Job Fairs" for the bedridden ????
We can't get Disability cuz the Dr's didn't know what we had..
We can't get jobs that aren't scams from home in bed..
WHAT do you expect us to LIve on and How do you expect us to Exist ?
And we were Hospital workers, professionals, professors, etc, Please Help us..
Where is your consciouses ???
We Demand a NIH SEP for the Research of XMRV and all cohorts connected with it NOW< Period.
If you do NOT make this a recommendation to Sec. Sebilius than we WILL KNOW where the CFSAC stands
and how much they Care NOT about the thousands of us that are NOT getting ANY Treatment or medical care
and are being simply left here to die.... so put THAT on your conscious... OK ?
HOW MANY YEARS MUST WE BEG FOR THE SAME THING ??
Do your salaries NOT Pay you enough to Buy Hearing aids ???
At this point , I really do NOT give a Rats A*# where or How we got it, but we HAVE IT and are testing Positive for it and HAVE Antibodies> Hello !!!
YES OLD ANTIBODIES> so not obtained after 1992....capiche ??
Sick Before Coffin's 1992 date = a Mute Point.. What's your Next excuse ?? For NOT Helping us ??
Continue your other Research, but for Gosh Sakes, "KEEP Researching the thing we ARE and Have antibodies for" = DUH
The poor Medical MDs that that you put on the front lines to treat us are the ones that catch ALL of the FLack ALL Year Long...
SHAME ON YOU> EDUCATE THEM... WITH OUR BIO-MARKERS SO THEY CAN KNOW WHAT TO TEST FOR...
My CD4CD8 is off and backwards, I have had HSV since I was 5, had EBV/Mono when I was 19, but to went away
and I was able to get married and work in the hospital for 17 years until I had my Triggering Event...
I had HIGH Fever "Sudden ONset" with a low grade fever that last for over 2 years....
I was on the couch living alone during that period. I could not even go to the hospital to say Good-bye to
My closest thing to a sister that was dying from AIDS as NO ONE could tell me what I had...
My EBV at the tome was very LOW> so NO it was NOT EBV> Get it ??
It had taken me 23 years to even obtain an written letter from my Dr that says I have > OH yes.. CFIDS and it is Spelled out... as well as OI< but she forgot the POTS part... and YES I have my own BP cuff and I use to work in a BP clinic, so I know how to take it. My thyroid gland is shot and so are my adrenals now.. so I must take expensive meds to supplement what my body can not make.... Where is ANY Mention of the deterioration of the body that THIS ILLNESS COSTS us so we can KNOW "what NOT to do" or "What to do to Help ourselves" = NO Where !!!
If you had DONE or Listened to Elaine DeFreitas maybe many of us would NOT even BE this sick now...
So you NOW have a Second Chance to get it Right... Your Center of Excellence is WPI>
Get that through your Brain Please.. They are the ONLY one to already be using Translational Medicine
which Dr Vernon to her detraction, tried to adopt and claim and a New idea, when WPI was already set UP that way 5 years ago !!! Vernon, maybe YOU need some Hearing Aids also, cuz we will NOT put up with your Revisionist History either.. capiche ???
Vernon talk about Everything that XMRV has done to bring ME/CFS into the Light of the Press and Scientists was done by the WPI not simply XMRV... sheez.... XMRV did not research anything. XMRV did NOT bring together the NCI and Cleveland Clinic, and it was the WPI that with them got the Science paper Published.. Vernon you can NOT claim what is not yours and you jealousy of them is showing as Green and your lack of knowledge and Expertise...
Last time I wrote you, I thought it might be my last, but NO Thanks to YOU I have found HOPE in WPI and learned a few things to help and my money has not quiet run out YET
so I am not on the streets YET, but I do NOT have enough to last until I am 66, so I will either die, or get meds, or lose the house I PAID for like a good citizens, and will probably have to go live in my trailer God knows where cuz I can't even drive to pull it anymore.. I use to travel to do my Nature photography in it.. to take me away from the stress of the hospital politics during the early days of HIV and AIDS....
but here we are again.... "And The Band PLays ON...
PLEASE REMEMBER THE
WORLD IS WATCHING YOU AND ALL OF THESE MEETINGS AND THEY KNOW WHETHER YOU CARE OR ARE ACTING SPINELESS.
For God's Sake DO something to Help us... Help those NOW that are XMRV+ Plus co-infections and Please get the Psychobabble OUT of the CDC's website and let's start acting like Adults here and Clean the Fricken Public Blood Supply NOW> NOT Years from now..
You are continuing to commit Crimes Against Humanity by your "Lack of Action." Period.
Own your Cajones or Ovaries and STand UP for what is Right... This Time NOW
Even Dr's Bell's Lyndonville kids tested 70% Positive for XMRV~
You want our blood FINE we'll donate it to you Personally~
You ARE Taking our lives... so what else do you want ?
We will NOT shut up for you or anyone at this point...
We have had enough > Got it...
We will speak up until our dying Day or until you get us some Meds to Help us as you are suppose to do !!!
It's Your choice... Give us Meds and DO More Research including a SEP for XMRV or we WILL start being heard in more ways than Egypt planned for...
Many around the world are not taking what is handed out bay their dictators any more and you have been not representing us effectively for the last 20 years.. nor the CDC/NIH for the last 30 years.......while "The Band IS PLaying ON>.
So HERE"s your chance NOW> Do it and show us what you are made of....
Cuz your actions will show more than your mere lip service
that we have been getting for decades.. while children die and the 3rd Generation gets infected...
WAKE UP and PLease SPEAK UP> NOW
The world is watching you and what you say and DO.............
Sadly, I remain, w/o hope unless you create a XMRV SEP and get us Help........
I might remain a while longer but I will NOT go down quietly and will broadcast to everyone, everything this government, AND every other Gov't has NOT done to take care of this NOW worldwide PANDEMIC. Wake UP !!
I had the Test, Now I need the meds..........
"Kill/Incapacitate the BIG BUG, then deal with the co-infections"
THANK ANY Journalist that reports that ME/CFS "is" a SERIOUS Disease, Please!!.
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Documenting the Life of Surviving with ME/CFS and OI/POTS and Invisible Illness since 1987. Back then I got what I thought was a virus and thought I would only be down the usual 7-10 days. WRONG I kept fighting it for a few months, but in the end I had to Surrender to it, which is NOT Easy for someone that has always been very active, a multi-tasker, and a "Get it Done" kind of person my Whole life.
Here I was in the prime of my life about 38 yrs old and going strong until this. then WHAM Bang. I ended up Flat on the living room couch, awake or asleep, for the next 1.5yrs. Living alone I couldn't
even go grocery shopping or I would get the fever back. I was lucky enough to find someone to cook for me once a week. The funny part is that until then I had working in a hospital for the previous 17 yrs, I get sick and they have NO idea what it is. Ran many tests, everything came back normal, so I get NO help/NO disability/nothing.
Even when I did calm things I liked the fever & associated feelings would come back. Yuppie flu? Never was ~ Never will be. Ever known anyone that had EBV ? Well THIS is it's BIG Brother, but a LOT Nastier at this point now 28 years.
I am SO sorry to announce that lately I have had to implement "moderating comments" due to SPAM comments that are trying to come thru, and I do NOT want you OR this blog subject to the type of inappropriate material that these SPAMs contain.. so Please KNOW that I WILL "approve your post" ASAP~ Thanks for your understanding... Hope you will be AWAP ♥ and Even BETTER Soon.
ALERT: If you are posting in a language OTHER than English, "PLEASE use a Google translator to translate it INTO English FIRST." If I can NOT even use the Translator to READ your post... It WILL BE DELETED.
❤ LIVE ❤ LOVE ❤LAUGH❤ Each Day We HAVE is "Precious." ********************************
**************************************************** Please be advised that NOTHING in any of the posts on this blog OR its associated links is meant as Medical Advice by this blog. Please consult with your Medical Professional before doing anything new or adding anything new to your daily routine of how you care for your health.