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Dec.2014 LauraHillenbrand FaceTheNation
ME+Unbroken Interview HERE -

Dec 2014 ~ "NIH"P2P4ME"

NIH="InsufficientResearch"=DUH !
Treatment= more"SELF Management"
DraftReport HERE
Nov.2014- "Plague"-Published !!
VOA-PodcastAudioInterview HERE
Amazon USA Link HERE

Tuesday, November 2, 2010

#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 Must have scales.

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


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