#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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#68~ UK-ME Association’s FB ‘Watergate" Poli-Psycho Fiasco

Does the ME Association’s Facebook ‘Watergate’ herald the end of the ME Association as a “campaigning charity”?

A short investigative report by Ciaran Farrell.

The recent situation on ME Association Facebook has been alarming and perplexing. We have seen members of the ME community thrown off that site without warning or any explanation, when the people summarily removed have not broken any of the rules of ME Association Facebook.

There was a profound shift in both the policy and practice of the MEA in relation to its Facebook. The MEA did not seek to construct proper or adequate rules for their Facebook. Instead, the main Admin of the site took high handed and presumptive action against members of the ME community by removing not only single posts but also entire threads without explanation, or if an explanation were given, it was not in accordance with the stated rules of MEA Facebook.

Those who were removed from MEA Facebook were merely ME activists who were simply expressing their views as would be expected in a tolerant and democratically run charity. Expression of views is to be expected in the public forums of any “campaigning charity” of the kind that the MEA prides itself as being.

Why then did the MEA change from being a campaigning charity into one in which “activism” was perceived to be a dirty word, and those found guilty of “activism” by the MEA on their Facebook summarily punished for the “sin” of engaging in “activism” by being excommunicated from MEA Facebook as a matter of policy?

Some, but by no means all, of the discussions where entire threads were removed centred on discussions of various psychological topics in which the MEA’s ‘Psychological Advisor’ Ellen Goudsmit was a major contributor. She put up a number of postings which either breached or were on the verge of breaching the rules of MEA Facebook, and then erratically removed a number of them.

On one occasion Ellen Goudsmit became so apparently stressed out by the scrutiny that she and the MEA were under that she became in her own words, “confused”, and appeared to be unable to cope with the situation, and proceeded to report MEA Facebook to Facebook Abuse.

In any event, this would have increased the level of scrutiny that MEA Facebook was under.

Due to the inflammatory and controversial nature of some of Ellen Goudsmit’s posts, she deleted a number of them, thus ruining the integrity of the threads, making it impossible for MEA Facebook readers and contributors to follow them. That in turn enabled MEA Facebook Admin to remove the entire threads on the grounds of the loss of thread integrity. Contributors to the removed threads were confounded by the disappearance of their posts.

The loss of entire threads meant that certain matters under discussion could no longer be seen or read by MEA Facebook users, and so left a great deal of unfinished business hanging in the air as questions went either unanswered or were addressed in a confused, confusing and contradictory way.

This matter was made very much worse since Ms. Goudsmit refused to answer questions about her official position of responsibility as the MEA’s ‘Psychological Advisor’ and the duties and responsibilities of her position within the MEA, whilst at the same time being apparently rather “confused” about the very psychological matters that she had been appointed by the MEA to advise them about.

It is a matter of common knowledge in some quarters of the ME community that Charles Shepherd, the MEA’s “Medical Advisor”, wanted the MEA to appoint Ms. Goudsmit to accompany him as some sort of additional medical or psychological advisor to the MEA, as they had both shared the same view about trying to change the name of Myalgic Encephalomyelitis (which is the official World Health Organisation, WHO, nomenclature for ME) to Myalgic Encephalopathy. Myalgic Encephalopathy is not recognised as a disease or as a disease name by the WHO, and consequently is not an acceptable medical or scientific term.

However, it was frequently not clear what Ms. Goudsmit’s role was on the MEA Facebook, or in what capacity she was responding to MEA Facebook users.

This led to a situation where the MEA were placed in the embarrassing position of having to on the one hand explain away these problems to their Facebook users, and on the other hand moderate Ms. Goudsmit’s Facebook behavior.

It would appear that the MEA simply were not prepared to address the problems outlined, or prepared to moderate Ms Goudsmit’s behavior on MEA Facebook, and therefore they sought an alternative means of dealing with a drama that was fast becoming a crisis.

I can now reveal that I have a certain amount of inside information about this situation.

According to a centrally placed key source within the MEA, who I shall refer to as “Deep Throat”, the MEA Facebook Admin was acting under orders from MEA Trustees. ‘Deep Throat’ was the code name of the secret source that made himself known to the two journalists, Carl Bernstein & Bob Woodward, during their investigation of the Watergate scandal.

It has been known that some MEA Trustees such as the MEA’s Chair Neil Riley, has had a presence on MEA Facebook. Mr. Riley was ‘outed’, as using a pseudonym on the MEA Facebook by other MEA Facebook users (despite his denials). It is less certain whom the other Trustees whom “Deep Throat” referred to, may be.

I had a chance meeting with Deep Throat the other day and he told me that the MEA Trustees, the Chair in particular, had taken a keen interest in what had been happening on MEA Facebook. Apparently, they had decided that MEA Facebook was simply not an MEA priority, and that certain people, including myself, had been removed from MEA Facebook because the Trustees simply did not want us there, and NOT because I or anyone else who had been removed had actually broken any rules or had behaved badly.

So it was political. The MEA Facebook Admin was simply following orders and could not, and ought not, to be held responsible for the decisions taken by the Trustees. Deep Throat informed me that if anybody wanted to complain about the removal of members from MEA Facebook and other moderation issues, they ought to write to the Trustees about the matter, and he made the comment that “much good it will do them”.

This was very much in accordance with my own theory on the matter; that the MEA had sought to preserve its relationship with its Psychological Advisor at the expense of being a campaigning charity and acting in an open, honest, transparent and responsible way towards the MEA’s Facebook users who had raised concerns on MEA Facebook about the MEA and/or the behaviour of its Psychological Advisor.

The decision that the MEA have apparently taken, according to Deep Throat, is to run down their Facebook through removing anyone and everyone who asks awkward questions or who posts anything but the most banal material. That decision was apparently taken on the grounds that administering MEA Facebook was taking up far too much time, and since staff time is money, it was becoming far too costly.

The idea, I gather, is for the MEA to turn their Facebook discussion forum into an extension of their Website which simply provides information without any form of discussion.

This would allow the MEA to place ‘safe’ information items on their Facebook site instead of on their Website on a daily basis, and to only “look in on” or ‘prune’ postings on their Facebook site once every 4 to 5 weeks. According to Deep Throat, that is the level of human resource the MEA are prepared to allocate to their Facebook discussion site.

It was not clear from my discussion with Deep Throat whether or not it was the MEA’s longer term strategy to simply run their Facebook site into the ground, and then close it, but I very much suspect it is, as the specified level of Admin time is unrealistically low for the Facebook site with nearly 900 members.

This whole incident raises several key issues :-

Firstly, the lack of willingness on the part of the MEA to set up clear rules for their Facebook site and consequently their failure to learn lessons from a previous Yahoo Discussion Group, MessageUK, in which the MEA was involved together with Action for ME, and which ended in chaos and failure.

Secondly, that the MEA have failed to act in an open, honest and transparent way. The MEA’s Trustees made their decisions in secret and manipulated matters from behind the scenes, rather than engaging in a full and proper consultation over the problems in order to review the situation on MEA Facebook as I and other MEA Facebook users were urging them to do.

Therefore instead of administering MEA Facebook through a democratically arrived at set of rules and polices, which would be published so everyone would know and understand how MEA Facebook would operate, the MEA Trustees simply sought to preserve their own vested interests by preserving their relationship with their newly appointed ‘Psychological Advisor’.

They consequently decided to re-order their priorities accordingly, so that MEA Facebook users membership was deemed to be expendable in order to force a change in culture on MEA Facebook. If this alone would be insufficient to bring about the required cultural shift, then MEA Facebook would also be expendable.

Thirdly, that in instigating their new Facebook culture that puts anyone who raises issues or asks awkward questions at risk of having their posts removed; in addition the possibility of entire discussion threads being removed without warning; and also putting members at risk of having their membership of MEA Facebook terminated without warning or reason - the MEA have effectively prevented the discussion of ME campaigning issues and the discussion of ME campaigning by activists.

The result of this has been to divorce the MEA from a grassroots discussion of ME campaigning and activism. That has taken place to the extent that MEA Facebook is now hardly used by members of the ME community, either for activism or for mutual support between members of the ME community, due to the climate of censorship, apprehension and distrust that has developed on MEA Facebook.

Therefore the MEA have become even more remote from the grassroots views of the ME community in general, and from ME activism / campaigning in particular. That development regrettably makes the MEA less representative of the views of the ME community, whose voices the MEA claim to represent, but from whom the MEA are becoming progressively more removed by the MEA’s refusal to hear or take the concerns of the ME community seriously.

In view of this, and in view of the decisions taken by the MEA Trustees, have the Trustees effectively set a course for the MEA to follow which is to abandon ME campaigning. If so, how can the MEA justify calling itself a “campaigning charity”?

End.