Friday, January 21, 2011

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:

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!):

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

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

New Hope in Fatigue Fight Wall Street Journal

The Lingering Mystery of Chronic Fatigue Syndrome

Exhausted by Illness, and Doubts

Gearing Up for the Big Search for XMRV

Saturday, January 01, 2011

Happy New Year Everyone!

Huge changes in my life – I am now living in Melbourne, Australia. Last year I applied for, and after many months was granted, residence in Australia. I arrived here on the 6th November. I came on an immigrant visa category known as “last remaining relative”. At the time of application I was the only member of my immediate family who did not live in Australia. My parents, brothers and sister, and a growing collection of in-laws are all either Australian residents or citizens. I had held out for as long as I could.
Lemon Tree and Bottle Brush
Melbourne is a city of close to 4 million inhabitants. Aside from an academic year in London a long time ago, I’ve never lived in a big city. I’m a small-town gal at heart, and feel lost in the sprawling, anonymous suburbs of this place. Only the unusual warbling calls of the indigenous birds and the occasional scent of eucalyptus on a warm day hint that this is a very different continent. The suburbs of Melbourne feel just as far from the more evocative Alice or Darwin, Kakadu or the Great Barrier Reef as a suburb of London or L.A.
White picket fence in the suburbs
Next on the agenda: doing the rounds of doctors in the hope of finding answers. At least here there are a few doctors who are willing and interested in treating ME – even if they do not yet appear to distinguish between those with neurological ME, and others with a variety of illnesses that are mistakenly diagnosed as “CFS”.

I have not made any New Year’s resolution to keep the blog going. Either I will or I won’t. To find out, keep checking back!