XMRV and me

I have not yet had the opportunity to get tested for the XMRV virus – the third human retrovirus discovered following HIV (AIDS) and HTLV (leukemia/lymphoma). There are no labs here in Australia capable of testing for this virus, and – so I’ve been told – no plans to set one up. So anyone here who would like to be tested has to figure out how to get their blood samples sent off to a lab in the USA or Belgium. I will eventually get tested – one of the leading world specialists, Dr Kenny de Meirleir, comes to Melbourne regularly to see patients and arrange for tests. The advantage of getting tested is to enable a decision about taking anti-retrovirals. These are the drugs currently accepted for treating people with HIV/AIDS. In the USA some people with ME (“CFS”) are already taking anti-retrovirals, even though no large-scale drug trials have been carried out (see, for example, this blog written by a medical doctor who tested positive for XMRV: http://treatingxmrv.blogspot.com/).

On the political side of things, the battle rages on – especially in the UK. Studies carried out in the US by government agencies as well as the leading private research institution for research into neuroimmune diseases, the Whittemore Peterson Institute (WPI), have shown undeniable links between people sick with ME (“CFS”) and the XMRV retrovirus. However the WPI is still not winning the government research grants that ought to be coming its way given its excellent record in this area. In the UK both the media (including, disappointingly, The Guardian) and government health authorities are in complete denial (to be kind – the truth is more likely “steeped in corruption or willful ignorance”) over the importance of recognizing and dealing with this health catastrophe that affects around 250,000 people in the UK and is estimated to cost the government billions of pounds annually in lost tax revenues, disability payments, and health care. Estimated ME sufferers worldwide are around 17 million.

If you would like to help make a difference in my life, and the lives of millions around the world suffering from devastating neuroimmune diseases, please consider donating to the WPI on a regular basis (I do!): http://www.wpinstitute.org/help/help_donation.html

For anyone interested in the research and the key documents related to XMRV, please follow these links:

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html


The New York Times has been especially good about covering the issues. Here are some of their articles:

A Big Splash From an Upstart Medical Center New York Times http://www.nytimes.com/2009/11/12/giving/12SICK.html

New Hope in Fatigue Fight Wall Street Journal http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html

The Lingering Mystery of Chronic Fatigue Syndrome http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health

Exhausted by Illness, and Doubts http://www.nytimes.com/2011/01/04/health/04fatigue.html

Gearing Up for the Big Search for XMRV http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/

Selection Criteria

For anyone wondering why the recent study carried out in the UK failed to find the XMRV virus, the following piece may shed some light on the matter. I don't know who Peter Kemp is, but I'd like to thank him for writing this!

I wanted to study the nature of penguins.
by Peter Kemp

The 'Canadian' definition of penguins is that they are:

Flightless
They can swim
Largest species up to 1.2 metres tall
They eat mostly fish
They lay 1 or 2 eggs
They generally live in colonies

The 'CDC' definition of these birds is that they are:

Flightless
They sometimes eat fish
They lay eggs
They can swim

The 'Oxford' definition is that these birds are:
Flightless
They lay eggs

The 'Oxford' criteria was chosen for the research as the others were
too difficult to apply. 100 subjects who met the research criteria were studied in
Sub-Saharan Africa.

The research found that penguins:

Live in deserts
Cannot swim
Are up to 2.4 metres tall
Weigh 200 pounds
Capable of speeds up to 40 mph on land
Are mostly vegetarian.

Conclusion:
The research has discovered the truth about penguins. Those funny black and white
birds waddling on the ice and swimming in the sea are making fools of everyone.
They are not real penguins and should be excluded from all further research into
penguins.