The silly season

This year I’m not being silly about it. Last year I had extreme post-festive payback. As March rolled around and I emerged from the dungeon of very low functionality, I concluded It Wasn’t Worth It. This year I’m setting boundaries, mostly with myself. I’m generally the culprit who needs reigning in. I’m in a prolonged crash anyway so it’s not too hard.

No writing of cards, no presents – the functional time involved in selecting, online shopping and wrapping is just too much. No meals with hordes of people. People are more than welcome at our place, but they have to bring the tucker.

Yes to a decorated tree, eating far too much, and our annual tradition of a short evening drive to see the lights on people’s houses. By evening the stinking heat of the day has subsided a little, and you gotta get out sometimes. You gotta get out so you can try to figure out who or what 'Shelby' is (the family dog?), and be impressed that the same household loves Holden so very much.

I just love unabashed enthusiasm. There’s something about the effort people go to in putting up all these lights that’s absolutely heart-warming.

There’s one house that’s my favourite. I tried to take a photo but it turns out it’s quite hard to photograph lights, especially from a moving car. In many ways the display is more unassuming than others, but they have strings of white fairy lights draped on some kind of frame over their whole yard, creating a magical twinkling ceiling. The owners always stand out the front, and if you drive past slowly, the man calls out, “You’re welcome to come in and have a look!”

For obvious reasons I’ve never gotten out to have a look. But every year I call out the car window, “Yours is my favourite!”

‘Tis the season.

First tomato flower

in the new garden, from a plant I grew from seed. It makes me very happy.

ME/CFS, XMRV, XAND, etc

Many of you will already know this, but for those that don’t, in October there was a tremendous hullabaloo in the ME/CFS world, and there still is. The best kind of hullabaloo.

This is because of research conducted by the Whittemore Peterson Institute and published in the journal ‘Science’: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.

The WPI studies neuro-immune disease, has reputable researchers on board, and has achieved amazing things in a short time. Their study found a potential link between ME/CFS and a retrovirus called XMRV. As the Director of Research for the WPI, Dr Judy Mikovits said in the press release:

“We now have evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS. This discovery could be a major step in the discovery of vital treatment options for millions of patients."

Although it’s not yet clear if it’s an issue of causation or correlation, many of the well-regarded names in the ME/CFS world are making big calls about the importance of the discovery. I’ve never, ever seen a response like this, and that in itself is exciting. It’s also garnered plenty of attention in the mainstream media.

There is a Q&A on the Whittemore Peterson site and I highly recommend reading it so you get the info straight from the horse’s mouth.

Hillary Johnson has also written about it in her inimitable style in an excellent article, ‘A Case of Chronic Denial’ in the New York Times. She is also reporting on XMRV on her fabulous blog.

As for the WPI itself, there’s a recent article by Denise Grady in the New York Times, ‘A Big Splash from an Upstart Medical Centre’, and a 2008 article by Cort Johnson describes how the WPI got off the ground.

If you’re interested in further reading, there are many links in my shared google reader items tagged with XMRV (sorry, I added the XMRV tag later so everything is out of order). Scroll through and see what catches your eye, or subscribe to the XMRV feed. There is an overwhelming amount of discussion out there. I’ve kept to the basics in this post, but I’ll be adding fresh links from the spectrum of opinion to my shared items as I come across them. All my shared items automatically pop up in the sidebar on the right.

Here are some interesting quotes on the matter:

Dr David Bell, in the Lyndonville News:

“But most of all I want to predict where this is going. I am using the "force" here. I have no special or inside information from the Whittemore-Peterson Institute. They have to be cautious and circumspect. I don't. I am an old man sitting on my porch rocking chair, desperately trying to retire; I will say what I think is true.

“…the really good news is that if XMRV is the puppet-master of ME/CFS, it conceivably could be very treatable. Theoretically, more treatable than HIV. Lots of work to do.

The politics of ME/CFS are daunting. But now may be the time to forge ahead and get something done. Congratulations again to the authors and the Whittemores. It is time for the CDC and the NIH to be constructive and do some science.

“…I think XMRV is going to turn out to be the "cause" of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare. The question is whether this occurs next year or twenty years from now.”

Dr Nancy Klimas:

“It’s important not to take these new findings about the XMRV virus as anything more than an exciting new development. We need confirmatory studies, then studies to see if the virus is contributing to the cause of illness persistence and symptoms. The good news is that if XMRV is linked to CFS, there are many antiviral drugs that have already been safety tested in HIV. that may inhibit viral replication. So those studies could be designed very rapidly.”

“My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV. But CFS, which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

Dr Dan Peterson:

Patients with ME/CFS (XAND) deal with a myriad of health issues as their quality of life declines. I’m excited about the possibility of providing patients who are positive for XMRV a definitive diagnosis, and hopefully very soon, a range of effective treatment options.

“X Associated Neuro-immune Disease, or XAND - a new disease entity encompassing ME/CFS - will require additional research funding to find effective treatments.”

Dr Paul Cheney:

“The finding of antibody or active virus in 95% of CFS and 4% of controls is a result that argues for causality, in my opinion, especially with the associated RNAse-L corruption and NK functional impairment that might predict such an infection. This novel retrovirus could easily shift the redox state just like HIV as has been published in (2001) and (1995) and induce all manner of associated pathogens as seen in CFS. A redox shift could ultimately corrupt the gut ecology and create P450 decoupling based on NADPH depletion observed in CFS and lead to environmental illness as well. Time will tell but I think Dr. Mikovits is right to suspect causality.”

Dr Byron Hyde:

“Dr Peterson, probably one of the nicest and learned colleagues in the field of CFS, recently from the brand new, just opened, multi-million dollar Whittemore Peterson Institute in Reno Nevada, announced overwhelming evidence that the cause of M.E. or CFS, is XMRV retrovirus. The XMRV mouse retrovirus occurred in 68% of the CFS patient’s blood samples and only 4% of non-CFS patients. Pretty convincing!

This retrovirus theory comes with a history: It was first raised as a possibility by the gay community at a symposium I attended in San Francisco in 1987 and again by Florida based researcher Dr DeFreitas in the early 1990s. Dr DeFreitas discussed this retrovirus theory in our textbook, ‘The Clinical and Scientific Basis of ME/CFS’.

At the very least, this retrovirus discovery is great free advertising for the Whittemore Peterson Institute. It will possibly bring them in many millions of dollars from, patients willing to be separated from their assets, generous charities and governments before the retrovirus theory is once again thrown into the garbage bin. I should add that incubation period of XMRV is up to 21 days which makes it impossible to cause an epidemic illness. One theory to explain this “new” finding is that XMRV is a mouse virus and since many research institutes have tens of thousands of mice, cross contamination of specimens are inevitable.”

And now for some video interviews. Here's parts 1 and 2 of an interview with Judy Mikovits and Annette Whittemore. I just love how genuinely thrilled the interviewer is.

And Dr Nancy Klimas:

There’s much I’d like to say on this, and I will, but I’ll leave it there for now.

Until next time, comrades.

New nest

We’re moving, due to the highly thrilling fact we’ve bought a house. Which means an amazing thing: a garden. I loved gardening long before it was socially acceptable, even somewhat trendy, for younger people to appreciate the art. These days Jamie Durie and his ilk are on the telly, extolling the many virtues. But back in the olden days, when I was at a party one evening, a guy looked at me askance and said: I hear you’re a bit of a Don Burke, eh? And then I told him about my sweet corn.

I may have already been purchasing seeds on the internet and obsessively perusing mail-order catalogues. I told you it was going to be a good year, and when I said that, I didn’t know a house and garden were in the offing. Housing has become ridiculously expensive in Australia (second only to Spain and Ireland, according to this article my friend told me about), and with one income and hefty health bills, we’d long accepted that we’d be tenants until further notice. Then there was a global financial crisis, interest rates went down, and we went oh yes, and thought we’d give it a go. It was one of those ‘now or never’ scenarios. It has been one of my dearest wishes to one day have our own place, I can scarcely believe it’s true.

I’ve designated myself boss-lady in charge of seed raising. Brace yourself for lots of seedling reports, after I recover from the transplant shock.

Business as usual

Existing diagnosis is intact. I will admit to a flash of disappointment about this. Although the new idea seemed a tad unlikely due to the rarity of the condition, it was a reasonable hypothesis. And all in all, despite the general unpleasantness of the process, I’m grateful when anyone puts their mind to looking at things afresh – treating the patient, not the diagnostic label.

I still have a bit more testing to organise, but it’s in the realm of making absolutely positively sure there’s not something else, rather than a potential new lead.

It’s amazing what a difference a husband makes – he came with me to the most recent appointment and Mr Hostile Doctor had a personality transplant on the spot. Later I asked him what he thought, and he described the doctor’s demeanour as sobered and confused. I started to feel compassion for him, the poor man has a list of very strange test results to try to make sense of.

Welcome to my world, Mr Doctor. It’s a parallel universe, the weird medical version of Alice in Wonderland.

Next post: happy news, and nary a mention of health matters.

If wishes were fishes

I was referred to a consultant physician for a third opinion on some medical things. The appointment was awful, like being in the witness box for a dreadful crime. The crime of illness. He interrogated me with gems such as: So you’ve done absolutely nothing for the last 12 years, is that what you’re telling me? and ordered every test known to humankind. I returned home, disappointed to have used a precious trip out of the house on such an aggressive encounter, shed a tear under the doona, then pulled myself together and started organising the tests. It’s taken months and great expense to work through the list. I thought I already had the most tested bodily fluids in Australia, but apparently not. He has since conferred with his learned colleagues at the posh hospital (perhaps once my results started to flood in he could see I wasn’t merely lazy) and they reckon I might have a rare condition with lots of syllables. As my GP joked, he’d never heard of this particular one, but there’d be a support group for it in America, hee hee. No final results back yet, but surely I’m not the only person with an ME diagnosis who fervently wishes to find out they’ve got something else? Something more treatable? I don’t mind how hostile the physician is if he figures something useful out. My GP and I have our fingers and toes crossed. I’ve looked this obscure condition up and there is a medication for it. Hope springs eternal. I always suspect that around the next corner is a breakthrough, I’m incorrigibly optimistic. Along the way the cardiologist told me, among other tachycardic tidbits, that the secondary OI or POTS component of things is much worse than we realised, which in his opinion helps to explain the ongoing symptom severity and extreme lack of functional ability. Memo to my heart: settle down and stop acting like I’m swimming away from a shark. Let’s sway gently through the sea grass fronds like a seahorse instead. It’ll be nice.