#93~ From Blood Ban to Drug Ban ~ collusion afoot ?

On the heels of the Fantastically attended UK Blood Ban Demonstrations all over the country yesterday covering all the mediums of BBC print, Berkshire radio, still images and video, and many "impromptu" educating classes at various Blood Donation Locations... there seems to be a "Trans-Atlantic Spoiler Alert" that needs to be Given ATTENTION By ALL patients + advocates  on BOTH sides of the Atlantic.
This does NOT ONLY effect ME/CFS patients !!!

Sunday night while everyone was celebrating Halloween, or planning for the 

next's days  Demonstrations, there seems to have ALSO been an orchestrated Trans-Atlantic gauntlet being thrown down in the UK and the USA regarding the usage of certain drugs that help patients, BUT their usage is being attacked via two different modes.

In the USA the news has been reported that  the FDA plans to start bringing "Criminal Charges" against Big Pharma CEOs for "OFF Label  Usage" as if the CEOs could know how and where their drugs are being RX'd. 

This is modeled on the questionable usage of the Park doctrine, that states company officers should be held liable for any illegal actions 
"by the corporation that the officer should have known about and been able to prevent."  
Here is a document that explains the Park Doctrine and HERE is a recent article explaining  the stakes we face. 

I don't mind the "Original Usage"  of the Park doctrine making sure that meds are not manufactured in unsanitary conditions, but this "Off-Label" trial balloon being floated here by the FDA Chief Litigation Attorney, Eric Blumberg, is seeking to "change corporate culture" in Big Pharma corporations.  

What I think he is forgetting is that many times there are NOT adequate approved drugs for many illnesses and many patients NEED and are Being Helped by these "Off Label" uses of many drugs..


This will be used to shut down "Off Label usage" and effect things like "LDN" and probably others I am not aware of....

The Timing of this Announcement seems "fishy" esp. after the UK NICE Guidelines Announcement  of their  making decisions about IF a Drug is "TOO Expensive" for  the stated purpose they could "effectively" decide what Dr's CAN prescribe or NOT within their medical system.

In the UK The National Institute for Health and Clinical Excellence, or NICE, scrutinizes the cost and clinical benefits of new drugs to determine whether the state health-care system should pay for them. If NICE decides that a drug... isn't worth its price tag, it advises doctors not to prescribe it, which effectively results in a ban. HERE is an article about this sad situation

ALL of this at the same time that already many patients with ME, Fibromyalgia and RSD and many other painful diseases are not able to get quality pain relief and we are fighting a backlash because the Dimwits at the Top do NOT realize that people that are "actually" taking pain meds CUZ THEY ARE IN EXCRUTIATING PAIN "ARE NOT GETTING HIGH" they are Simply trying to get some relief so the can even get some life back and be Functional.. 

Only those NOT IN PAIN get HIGH in this kind of situation.. This is SO Obvious to anyone that has a chronic pain to deal with that this is absolutely Ridiculous. Another case of Give the Politicians and FDA folks THAT KIND OF PAIN FOR A FEW MONTHS AND MAYBE THEY WILL UNDERSTAND ? Here is an article that speaks to the sad state of Pain Management in the USA currently.

I have a Really BAD Feeling about ALL of this...  It makes me believe in my gut that we are going to have to be MORE ProActive also about these issues and that means being more expressive by whatever means those in the effected county decide. But ONE THING is for SURE.. IF you "DO Nothing"  your ability to get the medicines you need WILL be effected, Trust me. This is NOT a Joke or False warning.

As they use to say on "SNL" (Saturday Night LIVE) during "Coffee Talk".... I sincerely ask you ALL to "Talk Amongst Yourselves" and decide how you want to address these issues, but they MUST be addressed....IMHO...but that's just 
"my opinion" based on years of observing the Medical Profession, the Governments involved and now the apparent "innocent co-incidental timing" of these edicts and pronouncements..

If it's smells like a fish, and is slippery like a fish, and wiggles when they explain their reasoning and excuses with logic that isn't logical .....it Must have scales.

You have been informed. What you do with this info now is up to you.


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#71~ ME/CFS videos- "What's wrong with ME ? "

If YOU had been physically sick for more than 20+ years 
would YOU like to be told it was ALL IN YOUR HEAD?

I felt at this point it was time to share some the recent videos 
to help others understand Just HOW fricken LONG this has 
gone on and What a CRIME it is That Medical AUTHORITIES 
IN A NUMBER OF MAJOR COUNTRIES have tried to ignore 
this Pandemic and attribute it to a "psych" problem...

MORE Likely~ THEY have the problem of DENIAL and are 
causing a HUGE loss of Economic income to their countries 
and depleting the family resources of all of the families that 
care for the patients that have ME/CFS... 
Just listen to Dr Bell's Testimony before the CFSAC.

Many times leading to SO much frustration, NOT only for the 
families that end up in bankruptsy or divorce.. 
but ALSO the many patients that have already been 
ignored for 20+ years and abused by the medical profession 
and can SEE what this is doing to their families.. 
and that have NO hope left and end up
committing suicide.. 

In addition to those that die from related/associated life 
threatening conditions that have BEEN IGNORED because 
they had been told they were a psych patient.. 
NOT TRUE and NEVER Has BEEN !!!


YES< ALL of this has been Documented in MANY PLACES 
and SOON all of this will be made MORE accessible to the Public 
and it's will prove to be the Medical Pandemic Equivalent 
of the BP Oil Spill/Destruction of Nature  in the Gulf of Mexico, 
that has and will cost many lives (human and otherwise) 
and take YEARS/Decades to fix IF ever..just because they 
ignored some safety rules and chose to go the quick and easy way... 

Well Medical Authorities AROUND the world.. YOU ALSO 
"Will be Guilty" of Ignoring a Pandemic... 
and you HAVE been told this MANY Times.. 
so don't play innocent with us..


The PROOF is being uncovered "right now" in many 
Scientific Research Labs and soon there will be MUCH MORE 
news, besides just a Dr Oz TV show..

ALL of these patients DESERVE even BASIC medical care..
but many "after all these years" are alone, bedridden, and 
have trouble even with basic daily care..Does ANYONE CARE?
SHAME of the Governments that have caused this to happen 
to their Citizens w/o even caring enough to DO Proper Research 
and slamming them with a Hippie "Yuppie Flu" name or even 
worse sluffing them off to the psych wards.


Since a picture is worth a thousand words.. Here are some 
videos...many new or old to you.. but worth sharing if you 
haven't seen them or wish to "share them with others you 
WISH to educate." 
PLEASE Turn your Volume UP.... and RePlay if Necessary.


God BLESS ALL of YOU that are Choosing to Help us...

Please REMEMBER that in the "Rest of the world"
"What the USA calls CFS~ is called ME",
which is VERY different from plain
chronic fatigue.
This video basically explains ALL of the same symptoms
that "REAL ME/CFS patients in the USA HAVE" !!!
Those that are "simply fatigued" or "depressed"
will NOT have MOST of these symptoms. Period.




The following are the 2 Movie Trailers  created "so far"
that will be a Documentary about this whole FIASO.


What About Me? Trailer - UK from Double D Productions on Vimeo.


What About Me? Trailer - USA from Double D Productions on Vimeo.

We THANK Double_D Productions with ALL our Hearts and 
LOOK forward to seeing the completed film. 
They just returned from the Cannes Film Festival, so this 
is NO JOKE folks... Thankfully and About TIME !!!


I will leave you with a few that will tug at your hearts
so you can SEE and HEAR the Reality of this illness.



For dear Sophia, in the words of her mother..
PLEASE UP Volume and LISTEN thru her accent.



Dr Donnica Moore explains in more detail about what
XMRV 
can do and WHY it is SO IMPORTANT and JUST the beginning.



This was a BIG accomplishment for us to get Dr Oz to 
do 
an actual SHOW (re-DO from a show a few weeks B4 that 
was ONLY about chronic fatigue NOT CFS...
AND TRUST ME, he got a LOT of Flack for that comment about exercise because he DOES NOT 
TRULY understand the extent of Relapse after exertion.


There is even a lab strictly set up for studying this 
that is part of the University of the Pacific, Stockton, CA. called The Pacific Fatigue Lab and here is there link
http://web.pacific.edu/x31814.xml
Their Head (Dr. Snell) is NOW the Current Chair of the  CFSAC 
(Chronic Fatigue Syndrome Advisory Committee)
that reports to the Sec. of Heath on Pres. Obama's cabinet.

XMRV "very well MAY' also prove to be the link for atypical MS,
Autism, Fibromyalgia, Lupus, Lyme Disease, Multiple Chemical Sensitiviy,
and how many more... we don't know YET... 
We DO KNOW that is IS found in men with Prostrate Cancer and 
HAS shown up in some patients with Lymphoma.

Please Help the ONE place that is currently already doing the Research along with other facilities to get us help...
The Whittemore Peterson Institute, Reno, NV.
 http://wpinstitute.org a 501C3 


YES, we ARE being/have been abused and it DOES KILL...
It "could" be your son or daughter next...
WILL you Help?

Bless you for Reading and watching THIS far..
Many more NEED to be Educated about this..
We have already been informing the blood banks
of the World and working with them to screen for this 
just like they were made to for HIV...


YES, we ARE fighting with not only City Hall, but many governmental
agencies around the World to Educate the public
for the health and safety of the WORLD.


Bless you and PLEASE Share this info, even if you
can't afford to donate or help in any way.. 
Every "tiny bit' of help is IMPORTANT ♥♥♥


Please leave us comments and let us know IF or How
any of these diseases has touched your life yet...


We ARE a World Family now working together for 
our Health and Well being.. Health effects EVERY
ASPECT of your Quality of Life...


May  you help NOW before someone you KNOW
is hit by this terrible life-altering illness...