Saturday, October 30, 2010

day Fifty-one: the scares about a virus...

Was not going to write a blog today - looking for a computer free afternoon/night as I am tired... yet again...
But before I turn of the computer my email box showed a few messages.

One was a message to members of the M.E. Chat Room on Facebook, posted by Vikki Walker: her message follows below in italic

There has been a lot of talk about the XMRV virus and it's link to M.E./CFS. A new minefield to deal with, as far as I am concerned. I try not to get too involved into new findings as they turn up on a regular basis. This one however is not going away, and now countries all over the world are banning people with ME from donating blood... and at the same time they are telling us with M.E. that it is all in our head...
Although I have not given blood, I do have worries about whom I might have infected...

The message is to work 'aks' for a policy chance in the U.K. I can imagine that the policy chance is needed in many more countries other than the UK....
So, please make your voice heard, whereever you are.
Thank you


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.


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.


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 centres 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.


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:
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:, DHMail@dh.;
Telephone: 020 7210 4850 Fax: 020 7210 5952

2) Dame Sally Davies, Chief Medical Officer, Department of Health
Email: CMOweb@dh.;, sally.davies@dh.;

3) Sir John Savill, Chief Executive of the Medical Research council
Email: Linda.Willmott@headoffice.; (personal assistant's name)
Telephone: +44 (0)20 7670 5155
Fax: +44 (0)20 7580 4369

NB. Please use Bcc (instead of Cc) when copying us in and create your own subject titles. These actions should reduce the number of emails stopped by those pesky spam filters.

Many thanks

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