#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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#92~ ME Blood Ban Protest+UK "Policy Change NOW"

A LOT is happening in the UK right now..

ME Blood ban protest (XMRV)

Location: Department of Health, Richmond House, Whitehall, London SW1

Time: 12:30PM Monday, November 1st
and

UK "Policy CHANGE NOW" campaign.
Worldwide Participation Encouraged !

Officially starting TODAY the UK is Banning ALL blood donations from patients that have been diagnosed with M.E. (while they STILL tell them that it's ALL in their Heads and that CBT 'Cognitive Behavioral Therapy' is the Best Treatment) RED Alert.. "Bull-S*^# Alert"...


There are Blood Ban Demonstrations taking place all over the UK.
The largest one is in London, while others are taking place in other towns
near their local Red Cross or Town Square, near radio stations, etc..
So far this morning there are 40 in attendance at the London location
while this is early..MORE are expected SOON.


There has been a TV interview and a radio broadcast (that can be rePlayed HERE) with many ME Callers .... "Esther Rantzen talks to Dr. Charles Shepherd the medical advisor to the ME Association and finds out why ME sufferers will no longer be able to donate blood in the UK under new safety guidelines." and one of our very own "Vikki ♥ Walker" and she "STANDS UP to the BS" they Handed her about the "ME 80% Cure Rate" BRAVO♥Ms. Vikki ~ and others also ...

In the UK the ME patients are FORCED to these kinds of Actions to Help INFORM the Public because of the Governments "Lack of Transparency" with Regards to Public Health Issues.

There is an official Government 'inside' notice called a DA Notice which was set up by the MOD - it's an official request to news editors not to publish or broadcast items on specified subjects for reasons of national security. This extends to issues of public safety such as blood supply threats and pandemics.


They have made signs they are placing ALL OVER THE PLACE to inform the Public.

 

The First Photos from the UK Demonstration are slowly coming out...

Here is our own Paul Gray "Standing UP for ME"♥

Paul says that many more pics will be coming later...

Paul says "Met some real pro-active people today and saw some... real courageous sufferers."

When Paul did this interview below "He was TOLD he could NOT mention XMRV."

Actual mention of the word XMRV/MULV not yet approved by UK government's Department of Health (DOH) for political reasons. Consequently the discovery of XMRV/MULV is referred to as 'the virus'. Why?



ME/CFS is treated as a mental illness in the UK and people are told to alter their mind and alleged faulty illness beliefs with CBT and exercise. Yet since 1969, the World Health Organization (WHO) has classified ME as a disease of the brain - ICD:10 - G93.3.

London Demo images courtesy of Julie Sowerby ♥Thanks Julie♥

 

Video#1


Video#2


More news + reports + pics will be coming later. ♥♥♥ Good Job everyone ♥♥♥ 

 More pics that have come in and are posted HERE
HERE
 


XMRV is a "RETROVIRUS" not simply "a virus" = HUGE DIFFERENCE !!!





Thanks Ms. Vikki for handing your blog over to  Sarah as she reports on HER Action in Glasgow, Scotland HERE.

Thanks to the Organizers all of you Everywhere!
     =  =  =  =  =  =  =  =  =  =  = = = = = = = = = =

Remember we STILL want people to Help with the UK "Policy Change NOW" email Campaign, OK :)

(until Nov. 12th, 2010)
"	The ‘UK POLICY CHANGE: NOW’ CAMPAIGN PRESS RELEASE YOUR TIME IS NOW" For over 25 years, all evidence of viral infections and immune abnormalities in M.E patients has been suppressed. Ignored. Buried. Instead, the Government shut the files away in a secret Medical Research Council vault, locked for over 70 years, and listened to a group of unconventional psychiatrists, authorizing them to control policy for patients. NOW THERE IS XMRV In 1991 a researcher at the University of Pennsylvania discovered a brand new retrovirus in the blood of M.E patients. This information was deliberately buried for 18 YEARS until in 2009 the retrovirus XMRV was uncovered by the Whittemore Peterson Institute in 67% of M.E/CFS patients. Further evidence of Murine Leukemia Viruses in 86.5% of M.E/CFS patients was confirmed by the US agencies Food and Drug Administration and National Institutes of Health in August 2010. The Department of Health has BANNED the donation of blood in M.E patients from 1st November –stating it “as precaution to protect the donor's safety by ensuring their condition is not made worse by donating blood" and that “there are no plans to screen already stored blood (Anne Milton Minister for Public Health, October 2010). THEY WILL NOT ADMIT IT IS BECAUSE OF AN INFECTIOUS RETROVIRUS. WHY? The current treatment guidelines for M.E were developed by a steering group dominated by psychiatrists, who state of M.E patients: “Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and health service”. Most M.E treatment centers are funded by mental health authorities within primary care trusts and placed within mental health units of hospitals and headed up by psychiatrists. We are not mentally ill. We are sick. Not only is XMRV prevalent in our blood, researchers have also found immune system abnormalities and EIGHT infectious subtypes of M.E. Antiviral trials have been a success in America yet these drugs are banned under the NICE Guidelines in the UK. YOUR TIME IS NOW The US NIH has recruited top pathogen hunter Dr Ian Lipkin to carry out further XMRV research. The UK authorities state “no public health action is required at this time.” It seems the UK Government is quite happy for this cancer-causing retrovirus to be infecting the blood supply; already it is estimated that between 3% and 7% of the healthy blood supply is infected and cancer has increased by 4% annually since 2008.                          =  =  =  =  =  =  = M.E/CFS patient community, sufferers, family members and friends - it’s time to join together once again and demand policy change in the UK!! The “UK POLICY CHANGE: NOW” campaign has just four simple steps or AIMs and taking part in our campaign is easy: 1. Address your email 2. Inform the campaign: Bcc: ukpolicychange@gmail.com 3. Message: copy and paste our message 4. Start over: repeat these actions once each day. Sample message: (adjust as necessary) Dear …..., "Stop allowing policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Pledge to make a definitive policy change NOW. Patients and their families are waiting." Jane Smith, Newcastle Housebound and bed-bound since 1999 Send to: 1) Andrew Lansley, Secretary of State for Health 2) Sally Davies, Chief Medical Officer at the Department of Health 3) John Savill, Chief Executive of the MRC Contact info: 1) Rt Hon. Andrew Lansley, Secretary of State for Health Email: lansleya@parliament.uk, dhmail@dh.gsi.gov.uk Bcc: ukpolicychange@gmail.com Telephone: 020 7210 4850 Fax: 020 7210 5952 2) Dame Sally Davies, Chief Medical Officer, Department of Health Email: CMOweb@dh.gsi.gov.uk, sally.davies@dh.gsi.gov.uk Bcc: ukpolicychange@gmail.com 3) Sir John Savill, Chief Executive of the Medical Research council Email: Linda.Willmott@headoffice.mrc.ac.uk (personal assistant's name) Bcc: ukpolicychange@gmail.com Telephone: +44 (0)20 7670 5155 Fax: +44 (0)20 7580 4369 Many thanks, ACTION NOW

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