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 Gapfrom 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 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.