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.

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.

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’s lots of links in my shared google reader items, scroll through and see what catches your eye. I’ve kept to the basics in this post, but there is an overwhelming amount of discussion out there. I’ll be adding fresh links in my shared items from the spectrum of opinion as I come across them, you’ll see them pop up in the sidebar. (I may append a compilation of links to this post when I’m able to.)

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 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 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 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 a cardiologist told me, among other tachycardic tidbits, that the secondary OI or POTS component of things is worse than we realised, which in his opinion helps to explain the ongoing symptom severity. 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.

Wall cloud

 

 

floating on the wall

beside the office bed

dreaming cloudy dreams

drifting near my head

 

 

,

M.E. Awareness Week 2009

For ME Awareness Week this year I thought I’d put together a summary of some of the happenings in Australia, the UK and the United States since this time last year. If you’d like to share what’s happening in your own region or country, please go for it in the comments section, we’re all ears. There’s also a collection of links to other posts at the blog for individuals promoting ME Awareness established by Rachel. If you’re new to the ME topic, my post ‘The Other ME’ is a basic overview.

The international community of patients are jack of being treated as second-class health-care citizens – nothing new there. For decades people have been rising from their pillows to engage in awareness raising or the odd skirmish as strength or inclination allows. What is new is that people with ME are more informed and better connected than ever, thanks to the internet. It’s been an eventful year.

AUSTRALIA: BELATED ENDEAVOURS BUT SLOWWWLY GETTING THERE.

Many people are diligently beavering away at the grass-roots level, but in terms of the national perspective, the main news is that the previously sparse ME/CFS Australia website was finally re-launched. It’s a very good source of mainstream information for medical professionals or those newly diagnosed, referring people to the Canadian Guidelines as a primary source.

Ergo, ME purists (with whom I agree with much in theory, but have serious and ongoing concerns regarding the practicalities), will not be satisfied because it uses the ME/CFS conflation, as do the Canadian Guidelines. The ME/CFS conflation is a bit like an unwisely married couple - the divorce isn’t final, and even when it does, they’re still connected due to prosaic factors. I’m as against the weak definitions of CFS as the next person, but given that many PWME in Australia are presumably living with a CFS diagnosis with no immediate hope for anything different, it seems to me that a generous dose of pragmatism is prudent and inevitable. People with this condition don’t need to be any more marginalised than they already are. I worry about people in small country towns with only one doctor who may want or need extra info, and I think that for those people a resource like ME/CFS Australia would be a very good starting point for both the patient and their GP – the info on it is up-to-date and significantly better than much I’ve seen on other websites.

I must note that not all of the individual state societies are part of the Australian affiliation, I’m not sure why. I do recall reading in one of the newsletters that there was some degree of conflict because some societies wanted to ditch the ‘CFS’ label once and for all, and others didn’t, but I don’t know if that has anything to do with it or not. I’d love to see more national advocacy, and a new website is a great start.

Lastly, Australia’s own Alison Hunter Memorial Foundation are sponsoring the Invest in ME conference in London on May 29th this year – a conference that usually attracts an impressive range of speakers. It will be IiME’s fourth international biomedical conference. As a card-carrying, doona-swathed member of the 25% of people with ME who are at the severe end of the spectrum, I am pleased to see the planned theme for this year’s conference: “At the 2009 conference we will raise more awareness of severe ME - a group of patients who are not represented in research trials.”

GREAT BRITAIN: THE MOTHER COUNTRY, HOME OF GOOD PEOPLE LIKE BEATRIX POTTER AND BAD PEOPLE LIKE SIMON WESSELY.

The UK released the NICE guidelines for NHS doctors treating ME patients. The NICE guidelines were roundly criticised, and rightly so, they bore the distinctive and predictable whiff of outdated science and inherent bias. Two blokes with ME, Douglas Fraser (former violinist for the Scottish Phiharmonic Orchestra) and Kevin Short (an engineer from Norfolk), sought a judicial review of these which took place in the High Court, London. Go them good things. A statement from their lawyer, Mr Jamie Beagent, sums it up:

ME is a neurological condition that affects an estimated 240,000 people in the UK. However, despite being classified as a neurological condition by the World Health Organisation (WHO) and the Department of Health recognising this classification, the illness is still regarded by some medical practitioners as primarily a psychological problem.
Short and Fraser state that NICE has failed to give adequate diagnostic guidance to doctors and, most worryingly, has recommended treatments that are both unsuitable and costly, for which there is no sound evidence base.
The interventions identified in the CG53 Guideline are Cognitive Behaviour Treatment (CBT) and Graded Exercise Therapy (GET), which patient groups and independent experts say are at best useless and at worst dangerous, especially as there is little or no medical monitoring of aspects of the illness such as cardiac problems and mitochondrial dysfunction. In biomedical research studies conducted in the UK, GET has been shown in to adversely affect patients with ME who perform exercises beyond their comfort level.

At the same time, NICE, in the CG53 guideline, has said that doctors should not routinely do extensive testing or use certain drugs for the treatment of symptoms. However, by not performing testing, patients with illnesses other than ME are grouped in the general classification and any analysis of treatment regimes can only become more confused.
The purpose of a NICE Guideline is to provide clinically excellent and authoritative information to NHS clinicians. Mr Short and Mr Fraser say that NICE has singularly failed to carry out this remit by ignoring the biomedical evidence and nature of the condition and concentrating primarily on recommending psychological management techniques.

Unfortunately, Messrs Short and Fraser lost the High Court Challenge. I was so dismayed I couldn’t bear to mention it en blogge.

Nasim Marie Jafry, author of a novel released last year featuring a main character with ME (UK news in itself), covered the NICE saga on her excellent blog and I encourage you to have a look. She is concise so it won’t take you long: this page shows you her posts on the topic. Ms Jafry’s book ‘The State of Me’ was described thusly by the ME Association: “A remarkable first novel … word perfect on neurological ME”.

I won’t point out every flaw of the NICE guidelines. Some sentences were sort of OK. But overall they were inconsistent and contradictory - unhelpful at best, negligent at worst. They read as though they were created in a specific context: not a context that is focused on helping patients optimise their functional ability or to recover, but to consolidate an ideology that is still very much in fashion in the UK.

The UK is the rather fertile home of the psychiatric paradigm of ME and CFS. Whenever I get shirty about this I take a deep breath and think of Galileo: in the fullness of time, good science prevails. The catch is, good science has to be carried out for it to even come close to prevailing. At the moment, bad science is winning. Studies of random ‘fatigued’ people that don’t exclude those with primary psychiatric conditions, and who (surprise, surprise!) improve when treated with cognitive behavioural and graded exercise therapies are still prominent worldwide, and cited as evidence that these are appropriate treatment approaches for ME.

Shortly after the challenge to the NICE guidelines in the High Court was defeated, Simon Wessely, high priest of the psychiatric paradigm, was interviewed in the New Scientist. He has previously asserted that, “ME is simply a belief, the belief that one has an illness called ME.” No doubt feeling bolstered by the outcome of the case, he was full of his usual illuminating commentary. When asked about people who are so severely ill they are bedridden, he helpfully responded: “In that kind of disability, psychological factors are important and I don't care how unpopular that statement makes me.”

I swear I could hear him crowing all the way here in Australia. I truly wonder what his colleagues who have declared me to be in excellent mental health would make of his pronouncement? I am confident that eventually he will go the same way as Roy Meadow, or Voldemort, as his horcruxes are destroyed one by one.

On the plus side, criticism of the NICE Guidelines for ME was extremely robust from many sectors of the UK health-care profession, and the compilation of this criticism makes heartening reading.

AMERICA: LAND OF THE FREE, HOME OF THE BRAVE, BIRTHPLACE OF THE CHARMING TERM ‘CHRONIC FATIGUE SYNDROME’. THANKS. NO REALLY, THANKS.

The history of the CDC in regard to CFS is dismal, beginning with assigning a name both trivializing and inaccurate, an inadequate and inaccurate case definition, misappropriation of funds and poor-quality research, in terms of both the focus of its studies and its methodology. The CDC has not had a meaningful or significant impact on our understanding of the illness or how to treat it.
-Katrina Bernes

Whew, where do I start with this one? The community of advocates in the United States are taking it up to the Centres of Disease Control (CDC), big time.

The CDC has a horrendous reputation when it comes to ME and CFS (read the riveting book ‘Osler’s Web’ sometime), and was the deserving recipient of a comprehensive blast at the Federal CFS Advisory Committee Meeting from Kim McCleary of the CFIDS Assocation of America about the CDC’s continued misuse of funds - or as she bluntly put it, “Let me introduce you to what I call the ‘Research to Nowhere’...”

Bill Reeves, nimrod and erstwhile boss of the CDC CFS program (hopefully not for much longer), has still been touting his empirical definition of CFS, as if we didn’t have enough diluted CFS definitions around already - about seven, at last count. Onya Bill. This study points out:

Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition. Given the CDC's stature and respect in the scientific world, this new definition might be widely used by investigators and clinicians. This might result in the erroneous inclusion of people with primary psychiatric conditions in CFS samples, with detrimental consequences for the interpretation of epidemiologic, etiologic, and treatment efficacy findings for people with CFS.
-Leonard Jason et al

In the current medico-political climate, using the Canadian ME/CFS definition and refining it further seems like the most realistic alternative to the other diluted CFS definitions. It needs improvement, but it’s the best mainstream definition currently available. The reality is that the US CDC has enormous influence, and if it adopted the Canadian definition, that would be a giant leap forward for everyone, compared to what’s happening now.

On April 27 this year, the CDC had a public-stakeholder meeting where they got to hear first-hand from many affected parties. They gave the nonsensically short-notice of one week for this meeting, a laughably transparent snub to a patient population who they know usually need more than a week to prepare for a simple luncheon, let alone something as important as this. Luckily there was still a commendable turnout.

One of our blogging crew who made it to the meeting has posted her testimony on her blog tumblyday, and Hilary Johnson, author of Osler’s Web and long-time ME and CFS superhero, wrote a brilliant and compelling report on the meeting on her new blog. If you only read one link from this post, do try to read Ms Johnson’s report, it’s zesty, funny, and incredibly moving.

DON’T WORRY, I’M ALMOST FINISHED.

People with most other medical conditions are not subject to the controversy and subsequent stigma that people with ME are. It is heartbreaking to be yanked off stage-left by an illness, and then, while trying to make the most of a frustratingly limited life, to sit by and watch bizarre medical politics play out across the globe, the outcome of which flows through and trickles into our daily lives, prejudicing and confusing our doctors, bewildering our family and friends, undermining the support we need on so many levels and leaving us to fight for every skerrick of medical and welfare support we do or don’t receive. It’s a travesty.

Things could be different. The clinical and research history of ME could be properly recognised and built on. We need international consensus on a strong definition for diagnosis and biomedical research. We need funding for this research, and studies on patients who actually have ME, not just on anyone who’s ever yawned.

It’s my birthday this week. We’re not having a family meal to celebrate because I’m not well enough, just a quiet cup of tea with one person at a time instead. I love a good cup of tea. As each birthday passes I’m aware I’m getting closer to the line in the sky where I will have been sick for as long as I was fit and healthy. I never thought it would be this way, I really didn’t. I’ve never embraced the beast, although in recent times I’ve been working on a prickly kind of truce in the apparent absence of other options. I continue to actively pursue treatment, and always will.

I was talking to my granny on the phone this morning, it is rare for us to discuss health matters, there are many better topics (tennis, quinces, Jane Austen’s writing desk, cryptic crosswords), but it came up in relation to whether I had celebratory plans or not.

Out of the blue she asked, “Are they any closer to finding a cure?”

I had to say no.

One lonely papadum, brave chickpea flour

On Monday morning I nibbled on a leftover papadum and thought happy thoughts about the weekend social extravaganza conceived by mastermind friends, wherein we went on a splendid outing in the lounge room. We ate a sensational feast of home-made Indian food: you should have seen the table. I love menus (back in the day I read recipe books like novels), so I will tell you that we ate dry lamb curry, chicken saag, raita, naan, papadums, tomato, onion and coriander relish, and I have to make particular mention of the fried aubergine coated in turmeric, cayenne pepper and salt. It was textural perfection - I have never eaten aubergine so sublimely fluffy. We looked at travel photos, wore surprisingly comfortable beaded finery, played an accompanying soundtrack, and the others almost danced but the boss dancer ended up being too tired to lead the troupe. He did a few desultory hip and shoulder wiggles and then lay on my daybed. After all that, I’m not lonely, but the remaining papadum was, so I ate it. Dipped in raita and delicious.

Here’s to good people and good food. And if you’ll excuse me and my wrinkly table-cloth, I must go back to being pole-axed.

Frohe Ostern! (Happy Easter!)

 

 

 

 

 

 

 

 

Righteo everyone, warm up your telly, a fab friend has made a gorgeous doco.

A large group of more than fifty family and friends have camped in the same spot on Australia’s Murray River every Easter for the last 40 years. Within the very Australian Easter tradition of camping holidays, their own German and unique rituals have evolved. Frohe Ostern! (Happy Easter!) is a high spirited micro-history.

She’s a talented writer and director who crafts stories with sensitivity and a lovely aesthetic touch, and says:

Over the production period of getting to know the campers and their histories, poignant tales of migration rose to the surface. Encased in the story of their camping traditions every Easter since 1969, is the story of the gradual evolution of identity from German to Australian. Although many tales of migration to Australia are characterised by hardship and struggle, Frohe Ostern! deliberately celebrates the positive aspects of migration to Australia’s multicultural society. With Frohe Ostern! I was compelled to make a film that is about time, place and above all, people.

It will be broadcast on SBS this Friday evening at 7.30pm.

Here’s the trailer for a sneak peek.

Frohe Ostern!

Happy birthday, doglet

These are the lyrics I like to sing to her, to the tune of Norwegian Wood:

I once had a dog,

Or should I say,

She once had me.

She showed me her ears,*

Isn’t it good,

Snicklypud.**

* Or tail, paws, snout, whiskers…

**Or other terms of endearment ideally rhyming with ‘good’.

On the weekend it was Ochre’s 12th birthday; that’s 84 in human years. Long live the hound!

The family got her when I was in Victoria visiting nana (yes, at the now non-existent house). After the excitement of hearing the magical word “puppy” down the phone line, I got no sleep for the next three nights.

When I returned to Queensland I disembarked from the plane, collected my luggage, and waited for dad by the carousel, noting it was weird he hadn’t met me at the gate.

I eventually spied him hovering near the entrance, carrying a small backpack in front of him, the zip gaping open at the top. I strolled over and we hugged, but I wondered why he was being so quiet and careful.

He gave me a look of triumph, and gently placed the backpack on the ground. A brown and black puppy stepped gingerly out and looked up at me. I almost exploded with joy.

We drove home in the white van via the bakery, where we ordered 3 pasties, one each. No sauce for the dog, thanks.

She and I spent the next years together at home, sometimes in bed, sometimes on the couch, sometimes on a yoga mat on the verandah, sometimes eating sandwiches in the front seat of the second-hand car I bought to learn to drive in.

My photos are all in storage, so I don’t have any to hand of her as a small pup, but here’s one of her as a young thing that a lovely friend found for me when I was making a slideshow for the wedding.

And here’s a recent photo of her. Older, wrinklier, greyer, not the least bit wiser. She still likes a snooze with her front paws tucked under her.

I love that dog.

Blossoming bedroom

We all know I lie around all day, plotting world domination and concocting interior design ideas just in case I ever own my own home, right? Right.

All this goes on in my headquarters, the bedroom, my room of choice on account of the heavy curtains over the window. The bedroom is a lovely dim cave. Like many PWME I’m light sensitive, too much light and my fronds shrivel. I save my light exposure for when friends are over and we hang out in the lounge.

My dear friend came over some weeks ago, bearing a magnificent lunch and decals for the wall at the foot of the bed.

She set to work while I hopped on and off the bed with the camera, fretting about whether we should draw out a plan on paper first. My perfectionism didn’t perturb her, she said it was best to whack them on the wall organically and proceeded to do so.

Below are pictures illustrating before (plain wall stunningly accented with two switches), during (herself at work) and after (unfinished in that picture, it looks even better now, but you get the idea).

I’ve always adored botanical motifs, it’s lovely to look at these.

Flame tree

The temperature in Victoria last Saturday reached 47.3°Celsius, the most scorching on record.

I spoke to my grandmother that day, she said it felt like the hottest place on earth. The countryside has been in extreme drought for many years. She held the phone up to the window and asked, “Can you hear that terrible wind?”

That evening there were sudden raging bushfires, the landscape smote.

My grandmother’s house, owned and lived in by our family for three generations, is gone.

The flames leapt and swallowed 140 years of our family’s domestic detritus, treasures lovingly kept and collated, every item an anchor that held down memories, my entire paternal family history.

Irreplaceable family photos, old super-8 video, my grandmother’s wedding dress, my great-grandmother’s piano, vintage Wedgewood dinner sets, war medals, decks of cards, portraits, sheet music, painstakingly compiled family trees, school reports, silverware, jewellery, satin ball gowns, bicycle frames, the old stables. It’s all grey, black, stinking ash.

Nana keeps wistfully mentioning the marble fireplaces.

Bizarrely, the bunya pine is still standing – she says she would have been quite happy for that to burn down, it dropped too many prickles.

Yet we are truly some of the lucky ones: many people have lost everything. Family, friends, neighbours, pets, houses, livestock, livelihoods - entire country towns have been razed. The scale of the destruction is apocalyptic.

Nonetheless, we lost my father several years ago, and to lose the remaining artefacts of his life in a bushfire seems nastily capricious of fate. It’s as if the last skerricks of him have been erased.

My brother had been to the house the day before the blaze, and taken two dictionaries from dad’s belongings, one for each of us, and some of his cycling medals.

He is helping sift through the embers and rubble this week. The ground in some places is still so hot the rubber soles of his Dunlop Volleys were melting. Nothing has been salvaged, the flames made a ghost of everything.

Victorian Bushfire Appeal:

400,000 hectares were burnt.

Donate to the Australian Red Cross,

check out Handmade Help or OzBushfireAppeal on Etsy.

Evening sky

Interview with Greg Page on Orthostatic Intolerance

Greg Page

The above links to an interview with Greg Page (retired Wiggle) about his experience with orthostatic intolerance. It’s fantastic that he’s speaking about it – I can’t tell you how helpful it is for the rest of us – he’s doing a great job in Australia for public awareness. I was speaking to disability services on the phone recently and they actually knew what I was talking about. He’s also started a research fund. Thanks, comrade Greg.

“I thought I must be getting unfit…

I’d be told that ‘you’re really healthy, there’s nothing wrong’…and you’d think, well it must be OK, or my imagination, or just something that’s not a real issue so just push through it…

I couldn’t walk properly, I’d get off balance, I’d walk into walls…”

I think many of us can relate to being told we’re totally fine when we’re as sick as a dog. Plus it’s always heartening to hear someone else talk about walking into things. I have bruises in the strangest places. Oy.

There’s also an earlier interview here. I thought I’d already mentioned it, but I searched my blog and there’s no sign of it.

OI is extremely common in people with M.E. See also my previous post here with links to further info at the end.

On Wednesday I called my doctor ‘Margaret’.

I said it with great confidence.

His name is not Margaret.

I was a bit dysautonomic at the time.

Memoria, a ladybug, and a fledgling year

Happy new year, all. It’s still January so I think it’s not too late to be expressing new year verve. 2007 wasn’t that flash. 2008 was delightful. I’m pumped about 2009 and the adventures to be discovered therein. Sometimes you can feel a good year coming, like a train rumbling in the distance.

So far this year I’ve listened to ‘Dreams from My Father’ on recommendation from a thoughtful friend – was fascinating – and the perfect antidote to ongoing Christmas payback. (Am reassessing future Christmas involvement.)

Today my friend brought lunch around and gaily said, “Meals on Wheels!” as she came in the door; my cousin emailed; and there was a ladybug walking daintily on the office wall next to the bed.

Am about to have an online-chat with the fam to coordinate my ‘care’ for this year. (Shall I put in a special request for pavlova?)

Will leave you with last night’s riveting late-night discussion with my living aide-mémoire, he who shields me from total confusion. Behold my razor-sharp mind.

him: what time did you get up this morning?

me: rrrr, not sure.

him: hey, thanks for your text today!

me: did i send you one?

him: yep.

me: was it a nice one?

him: yeah, it was actually.

me: that's good!

him: did you email the GP?

me: i did not. is it on my list?

him: yes.

me: which list?

him: all the lists. white-board, laptop and next to your bed.

me: i’ll look at the lists and remember tomorrow.

him: good night, wifette.

me: good night, life partner.

him: HUSBAND!

me: hooo that’s right, i forget we’re married now!

him: you didn’t forget, and you know it!

me: [that noise your cheeks make when you smile in the dark]

him: i can hear you smiling!

Here’s to good memories, meanderings, and little flapping wings.