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


Beatrice said...

Well done Nicola for covering this for us! At this point we need all the help we can get. Keep up the good work!


nighearain said...

Good post! The standard method of undermining ME research now seems to be to deny research grants.

They took blood from some people in Ireland for an XMRV study, but unfortunately I didn't get onto that.

Andrea Pring said...

Thank you, Nicky, for sharing your thoughts. Are there many good ME/CFS doctors in Australia?

Nina said...

Great, informative article, Nicky! Still working on one myself but not sure I'll be able to finish today.

Smiles to Australia (I just read you moved there permanently, I thought it was a really long holiday, lol). Hope you're doing good.


Jan Laverick said...

Thanks for the great blog post :)

Max said...

Brilliant blog and as I live in the UK I think you summed up the UK stance very accurately - denial & corruption

Tina Tidmore said...

If the retrovirus is determined to be the cause, then WPI deserves the Nobel prize.

Lynn Bousquet said...

Thanks for the article. I think the British government denial will become increasing untenable as the XMRV research continues to show a link to ME/CFS.

Creek said...

Excellent post! Thanks for tying in the worldwide situation with the state of things for you in Australia. It's important to know what's happening everywhere and how different patients' experiences are in different locations... in one place a center of excellence being built to offer a clinic full of specialists, in another place no access to any doctors knowledgeable about the disease, and in some the snake-pit nightmare of patients shunted into mental health facilities and being mis-treated to death because the nature of their illness is misunderstood. Sounds like you've got soem hope at least with the visits of de Meirleir, but the presence of a specialist once a year is nowhere near enough. This disease needs a ton more funding for research and for patient clinics and services!

Creek said...

Great post, great info. Let's hope we soon see some great funding for more great research!

Kari said...

Thank you for your great post! So much appreciated!

Liz Willow said...

Nicely done, Nicky. It's interesting to hear what's going on (or now going on) in Australia given the XMRV news. And I like the way you covered the worldwide politics surrounding this discovery.

vw said...

What a wonderful blog nicky! Its a delight! Thank you x