#89~ CFSAC-2010- My Testimony NOW or NEVER

For the Oct 2010 CFSAC Meeting:

CFSAC Committee members, Dr. Chris Snell, Dr Wanda Jones, and patient audience.,

First, I would like to Thank this Dr Jones for ALL she has done to Help the patients in the past years and STILL currently is ...and we REALLY appreciated the ability
to comment and see the webinar... and know that we know about the NEW program this year.. once you get the kinks out.. the ONLY thing which is a BIG Lack this year is the (Closed Captioning) that is VERY MISSED...

Also Thank You Dr Klimas and Jason for your Service which will be VERY Missed.. you BOTH are a HUGE Asset to this committee... I hope you can help us find others that you feel can fill your HUGE SHOES...

I Sincerely HOPE That THIS current Committee will work ASAP to Organize those in between "Skype Meetings" they talked about in the past so that things can MOVE Faster.

I was NOT going to write like I did last year, but after the Science Day I felt I needed to send this
even if it would not make it into the CFSAC pages or be passed out to the Committee.

I am writing you because basically I am about to Give-UP HOPE of you EVER finding a Solution  for me
and many like me in OUR Lifetimes. I literally do NOT have YEARS left after 24 years of this already.
To add insult to this, because of the "well documented" LACK of Research fover the last 25 Years OR the CDC taking us as a Serious Illness.. I have NOT been able to find a Dr that KNEW ANYTHING ....even tho they thought they did.. as in "It's All in your Head."

It has taken me the last 12 years to Finally get my current Dr, who admitted to me BY HIM< "to the End of his Knowledge about 4 years ago".. but because he KNEW I had some Medical Knowledge, I kept searching and learning and feeding him and his staff INFO and Research and they have FINALLY AGREED to that I AM INDEED Permanently Disabled, even tho my car has had a Placard for 4 years now... nothing for me....YET.

But, what GOOD is this designation to me NOW?

If this session IS about Disability, than Can we FIRST address the fact that only about 20% of us actually HAVE a Diagnosis that would even a ALLOW them to get Disability> BIG Gap from REALITY of the AMOUNT of REAL Treatment that is NEEDED and the URGENCY of THIS Patient Population that is Being IGNORED because the Dr's are NOT being Educated.

In My Case.. NOW  that I have the Holy Grail of a Diagnosis, what good id it to me?
It TOOK me 24 years to get it ...... Soc Sec will NOT give you Disability if you have NOT worked
in the last 10 years.. so I am STILL w/o Medical Coverage or Assistance, even of the IN-Home Help kind,
let alone any financial help.

I am NOT old enough for Medicare although I did INDEED work in Hospital for 17 years before I got this bugger..so I HAVE  My Quarters IN..to no avail.. PLEASE OH PLEASE I Beg YOU..

Help Those of US stuck IN "this time warp".. It was NOT My Fault that the Dr's have NOT been Educated.. and it took me this long to educate and convince my Dr that This IS the TRUTH and reality of my situation.

If you can NOT Give us Clinical Trials yet, can you for God's Sake 
at least Mandate that anyone with this Diagnosis  that is bedridden 23/24 with OI/POTS and lives alone MUST be given IMMEDIATE Disability Coverage.. so I can at least have some Medical Coverage 
and Help so I may "last another year.."

With out it I SINCERELY FEAR that I will NOT....

I will NOT make it "out ON the Streets"....Period. I am Barely "Surviving NOW"

I must pay someone to help get obtain groceries ONCE every 2 months ONLY.
Many times I am in bed for 2 days and only even make it to the kitchen or out to get mail
every other day. That's 48hours  in the bed and bedroom alone, without help.
With OI/POTS I must hold the walls to even make it TO the kitchen and Definitely can NOT
even stand long enough to cook a meal unless it can be nuked FAST.

I am down to drinking Ensure type Protein drinks about 4 a day and
taking supplements/meds when I awake. I am in my House that is Paid for
but I can barely do the paperwork to pay the bills and money will run out
in the not too distant future, and when I can't pay for my Utilities or Property Tax
I will be out on the street.    I do NOT have a "street personality."
I would NOT let that Happen. I do NOT have any family or friends that can help me.

YOU alone are MY LIFELINE.... and I am NOT hearing anything YET to Give me HOPE...

If you do NOT Hear from me next year you will KNOW WHY.
Thank YOU CDC for the Wonderful JOB of covering UP this Epidemic with the dismissive name
and giving us all a Stigma that has caused our illness to NOT be taken Seriously.....
You stole our Research Money, and now  you are causing me MY LIFE.
You indeed are NOT the Center for Disease Control.
To Us you have been the Center for Disease Mis-Information.

When you can't even ADD the MAIN Mandatory symptom
to our ReQuired List of Symptoms.. You are "Blacklisting us" and even if I had insurance
the Insurance companies would NOT pay to have any of these Bio-Markers tests Done that we need.

POST Exertion Malaise has been HUGE with EVERY ONE of us since Day....
Where where your GOOD Patient History Notes then?
Your LACK Living UP to your Hypocratic Oath is INDEED Causing Very Much Harm..

I am too weak and tired to write any more.. those are my facts and situation.
"YOU are my VOICE"... if you do NOT Care to do something to HELP those if us
in MY position than we will be on the CDC/CFSAC List of the Departed.

Thank you for listening.

Sacramento, CA



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#80~ Dr Cheney "corrects" youtube Video !!! +more

VERY IMPORTANT CORRECTIONS TO READ FROM DR. PAUL CHENEY ON AN INACCURATE YOUTUBE VIDEO OF HIS XMRV POSTER PRESENTATION AT XMRV WORKSHOP - You many repost these comments as long as they are attributed to Dr. Paul Cheney (the video has now been removed).

‎"My biggest problem with this U-tube video was the emphasis on "heart failure" as opposed to heart dysfunction or "LV diastolic dysfunction" which predisposes to orthostatic intolerance rather than death by heart failure which is very rare... in my select cohort. My poster never said heart failure was associated with CFS. However, we do know that broadly defined diastolic heart failure does not typically occur until age 72 or later so what will happen to my patients when they get into their 70's is up in the air, assuming they are not treated with things like CSF's before then. There is also the semantic question of how heart failure is defined. If it is defined by organ failure and usually death within 5 years, I don't see this and is likely very rare in the age brackets I see with CFS with an average age of 49. If it is defined by organ dysfunction including heart, GI tract, exercise intolerance, heat intolerance and brain problems etc. produced by low cardiac output then you could use the term heart failure due to diastolic dysfunction in much of my practice. Death by such a functional definition is, however, rare compared to the heart failure patients admitted to hospitals with normal ejections fractions and deemed diastolic heart failure. Such a diagnosis is very lethal over the next five years with only a third alive after five years and virtually all are quite disabled and will remain so.

"Another problem is the "8 of 16 family members" positive for XMRV. The poster actually says 50% of healthy family controls or exposure controls (N=8) were positive. The U-tube video assumed that there were 8 positives when in fact 8 were tested and 4 were positive. 6 of 8 were healthy family members of CFS cases and 2 of 8 were CFS exposure controls and not family members. However, when we get the serology data back, I think the number of family members infected will be higher than 50% and the N value will climb well beyond 16 so this correction may soon be mute.

"I think the U-tube video misses the very important point that the cancer rate is much higher (47%) in the non-CFS, first order family members than in the CFS cases themselves. This will be the big story going forward as to how you answer the question of why this is so. Is CFS a compensatory response to reduce serious disease and early death? I will say that Dr. Jason's assertion (or perhaps it is only the U-tube's assertion) that death occurs 25 years before they should have died is a fallacy as that number is drawn from the average age of all those who actually "died" and not a large group of CFS cases. In addition, perhaps a third of deaths occur by suicide in the young CFS cases and that will skew that number of 25 years before their time.

"The U-tube's final assertion that XMRV is a killer is somewhat exaggerated, at least in CFS. It certainly can be a killer but the U-tube video paints the death rate as much higher than it really is in CFS. In their defense, XMRV is a killer but more-so in the non-CFS but infected cohort which I think will be much larger than CFS itself and drives many cancers to be very aggressive with much higher death rates than would otherwise occur (see Singh et al, PNAS, 2009). XMRV may also be driving the epidemic of diastolic heart failure now seen in those over 70 and most die quickly within five years once admitted to hospitals for heart failure (see Owan et al, NEJM, 2006). XMRV may well be a killer, but the paradox is that not as much a killer in CFS unless perhaps they reach age 72 or above but that is near our present human life expectancy. The most interesting question of all is how did they live that long with such a killer virus and with such severe disability comparable to heart failure?"

Paul Cheney, M.D.
***************************************************
The video in question was entitled 
Third positive MULV study: Cancer & heart failure in XMRV families with CFS" and the link can still be seen below on my wall but the video has been removed from Youtube.
***************************************************




This is all very interesting in the details...
esp. with the knowledge that Dr. Cheney himself
had a heart transplant and gave a talk about 5 years ago where he stated that people with LV diastolic dysfunction, IF they had stayed Vertical and were not Horizontal, like from CFS, that their heart would INDEED probably be dead in about 5 years because of the organ failure due to lack of oxygen because of the OI and POTS.
He stated at THAT time: that it was the Fact that we INDEED WERE Horizontal because of CFS that we STILL Alive....


I specifically remember hearing this because it made a HUGE impression on me personally....
because it was at THAT time I went to a Dr and he tested me for OI and I also started staying more Horizontal to  protect my heart from being damaged from the POTS... which I did experience when I was Vertical.. and as time has progressed each time I am more Vertical
my OI and POTS has become worse and and I am now having to do MORE to specifically prevent the POTS and keep the circulation flowing ... so I'm not sure if I buy TOTALLY his reply.. I think a LOT needs to be studied as to if the person is indeed XMRV +Positive or if they have CFS, but are XMRV -Negative, and what age  they had their Triggering Event .......


There seems to me to be quite a bit yet to be Clarified.. as Dr Cheney can ONLY speak for his current cohort, which does not include all of the 4 million with CFS in the USA, let alone the 17 million in the world.


I guess I will soon know which category I settle into.. As I had my Triggering event when I was 38, but "pushed myself between relapses" until I heard his talk about staying Horizontal to preserve the heart... As I am already 61, it will be interesting to see if I indeed only live to 72, or MY Family average which is closer to 90.
I definitely will NOT commit suicide and will go out kicking... I have already had too many friends die by suicide that had nothing to do  with CFS, and I have had Cancer on BOTH sides of my family...my mother by non-hodgekin's lymphoma, who had a mild form of RA, and my brother also has a variant of another immune system disease.


Either Way, these do not paint a pretty picture for "The Golden Years" even after working for 17 years in a hospital... Maybe if Dr Cheney could get a "Charitable Backer" he would make his Research info "more easily accessible" to the patients that have already been sick for 25+ years but "can not afford to go see him" and do all of his tests "let alone get Rx'd any Cell Signaling Factors" to help with their heart issues.. By not making his info MORE Publicly accessible to those that REALLY need it.. He is actually making things more confusing for us.
I would REALLY like to see him care MORE about the other millions of CFS patients out there that hang on his every word, but only give us dribs and drabs, cuz we can't afford to subscribe to this newsletter...
So, I think he is "fine-tuning" his wording now...

Mainly because~ here we go again...to the CDC's intentional poor choice of a name for this illness and their intentional covering-up of it's prevalence for the last 25 years... Since MOST Dr's did NOT know what we had, most of us could not get a Proper Diagnosis and thus we could not apply for Disability, and now that we have a Diagnosis, Soc Sec says we waited too long to apply... what? If I am disabled now, and I have my proper quarters in, I should be available to qualify for Disability~ Period.


So until we reach 65 we are stuck with NO medical insurance or income. This is another disgraceful situation and reality especially for those that live alone and tried to play by the rules all of these years.. Even without XMRV, again the CDC "Can't Detect Crap."...and leaves us stranded and uncared for now because we could not be diagnosed because they have been using the WRONG Definition..........

HOW MANY TIMES DO WE HAVE TO SAY THAT ??

I will not declare that I am depressed simply so I can get Disability because I am more "Ticked OFF" and VERY Disappointed in our Dept of Health and Human Services and the National Institute of Health and the CDC that were set up to "care for  the Health of their citizens" and they have Failed us in the extreme !!!
Adding "Insult to Injury" ......

 This is  Invisible Illness Awareness Week -- half of Americans live with a chronic health condition, and 96% of them are "invisible" -- even to our Government to whom we have paid taxes all the years we  WERE able to work... and what's with all of the "Job Fairs" ONLY for those that can stand in line for 5 hours... How about "caring" to HELP those of us that want to work~ but are bedridden... Our brains and laptops still work VERY well.. Where are the Job Fairs for us? Are we left to get scammed by a Craig's List job offer? How about some HELP for the Disabled that you have DENIED Disability to... so we can Happily pay some taxes and NOT end up living on the street....

The Devil is in the Details and everyone has ignored 17 million details.......LONG Enough !!!