Australians Mad as Hell

Australia is in the middle of a federal election campaign, due to be held on August 21st. I love an election, it’s sport without the sport, but it’s been a tad dispiriting this year. I was hoping Julia Gillard and Tony Abbott would go at it hammer and tongs like they do in parliament, but so far they’re uncharacteristically subdued.

Today I want to draw your attention to a great online lobby group called Australians Mad as Hell, who are campaigning in support of a National Disability Insurance Scheme - ‘a no-fault insurance scheme designed to fund essential services and supports needed by people living with disability.’

“We’re Mad as Hell that Australia has a Third World disability support system. Millions of us are affected. It's time to make our votes count.”

I’m in favour of the introduction of a National Disability Insurance Scheme and support this campaign. The disability support system in Australia is diabolical. Many people are in a worse situation than ours, but in our household we genuinely struggle to manage the practical aspects of day-to-day life. We’ve spent much of the last 18 months grappling with the system to try to access more practical support, to be told there is no funding and to approach various charities instead. Which is exactly what I've been told for the last the 15 years I've been living with disability, although I won't bore you with the details.

Some points from Australians Mad as Hell:

• Australia has 1.4 million people with serious disability - the population of Adelaide and Hobart combined.
• Australians living with disability have higher costs but lower income. Modifying your home, using mobility equipment and accessing ongoing therapy are necessities, not luxuries. The waiting lists for disability equipment can stretch for years. Personal payment of disability expenses is only 20% tax deductible.
• Australia needs a no-fault disability insurance scheme designed to fund essential services and supports needed by people living with disability.
• Disability is part of life. It can affect anyone, any age, any time.
• Australians realise that anyone can become temporarily or permanently disabled through no fault of their own. Yet few know that our disability support system helps only a fraction of those in need. If you become disabled due to a car accident, you are covered in several states by no-fault insurance. But there is no automatic entitlement to support if you have a stroke and can't walk or talk, for a teenager who crashes a skateboard and is permanently injured or if your baby is the 1 in 160 with autism, the 1 in 400 born with cerebral palsy or has an intellectual or other life-long disability, or if you have a mental illness. If you want change, make your vote count. Take the Mad as Hell Pledge.

The ‘Mad as Hell’ lobby group are campaigning for desperately needed change. I’d encourage you to check out their website and think about the disability policies of the party you intend to vote for.

Good things about Winter

• Dressing gowns cover a multitude of sins.
• Steam drifting from the teapot’s spout.
• The temperature is nicely vaso-constrictive.
• One can ponder whether or not seasons ought to be capitalised. Depending on context they don't need to be, but I can't bring myself not to. They seem too important!
• Electric blankets are a magnificent invention.
• Slow-cooker bubbling away on the kitchen counter.
• Anything red is so enlivening.
• Flannelette pyjamas.
• The natives are entertaining. Queenslanders complain bitterly about the cold while inappropriately attired - my Thursday carer wears a cotton short-sleeved shirt and shivers dramatically. Naked elbows and knees earn no sympathy. Put some wool on, people!
• White orchid flowering bravely in terracotta pot by the front door.
• Waft of wood-smoke in the evening air from the neighbours across the road.
• Fresh parsley torn over cooked brekky on Sunday mornings.
• Afternoon sun. Magical.
  

How about you? What makes your list?

15

I wake up every morning all excited and curious to see what the day will bring. If I could leap out of bed and do a cartwheel I would. Every new day is brimming with possibility.

Simultaneously, my daily life is consumed with managing a chronic illness that’s a brutal task-master. There aren’t words in the vocabulary of any language to accurately describe how appallingly sick I feel. The pain is immense. My face throbs. I lay my head gingerly upon the pillow.

Although I tell myself M.E. Awareness Week is just an arbitrary date, I have my cranky pants on this week. There’s no need for me to let a date on a calendar vex me, but it’s a non-arbitrary number that’s the problem. The number 15. The number of years I’ve had M.E.

23 hours a day in bed, the norm for the last few years, is not fun. Nor is being hooked up to an IV to gain an extra couple of hours of verticality for a day or so.

You’d think I’d be used to it. I’m not used to it. Each minute weighs a ton. The clock on my bedside table has a red hand that ticks away the seconds. Sometimes I’m so frustrated I want to bite the clock in half. The only reason I haven’t is the match-stick wedging the battery in, put there by my late father. When I change the battery, I think of him.

Years ago I was talking to a friend, older than me, and she mentioned that she was coming up to her 20th year of illness. Young, stupid and gauche, I gasped, “How have you not killed yourself by now?” She didn’t take offence. She seemed as surprised as I was that she was still here. Over the years we have both been equally obsessed with the concept of full recovery, although these days my obsession has reduced to a fervent hope for improvement.

Back then the thought of 20 years with this illness was so intolerable to me I genuinely couldn’t comprehend how she’d endured it. I’d made a promise to myself that if I got to the age of 30 and was still sick, I was allowed to top myself. I am not endorsing this mode of thinking, and long before I got to my 30th birthday I’d decided to stick it out. I am gosh darn thrilled to be breathing. One day I’d love to learn to tap dance, sometimes I even do a little shuffle in my slippers.

Of course what I really wanted was not to die, but to be given the chance to live, really live. Not this buried-alive existence that is severe M.E.

This week I can’t help but reflect on the last 15 years, and ponder how little has changed for people with this condition over that time. Collating the research for an article summarising 2010 ME/CFS news really brought that home.

Not much has changed at all. I still have to brace myself for problems when seeing a new member of the medical profession. I still have to keep my mouth shut around some extended family and friends who exude the faint suspicion this is some kind of elaborate hypochondria. It is still exceptionally difficult to access disability services. There is still a woeful lack of good research and a corresponding lack of effective treatment options. There is still a lack of science to tell me whether it’s safe to consider having children if I were ever miraculously strong enough, what the risk is that I’d pass it on. It is still logistically hard to access basic health-care. So many uphill battles. Still. And I know I’m not alone.

There is so much need for awareness raising, for great research, sometimes I feel discouraged that my efforts, and the efforts of thousands of others, have not yet brought about meaningful change. 15 years and what? I feel like I’m whispering in a football stadium.

In recent years I’ve been blogging about my life, the lovely bits and the strange bits. It takes it out of me, I give up other things to be able to manage it. I appreciate everyone who reads, although naturally the numbers are not colossal, there is limited appeal in reading about someone who lives in bed. But am I just preaching to the choir? Does any of it seep out into the broader community? Is anyone more informed because I tell my story? I don’t know the answer to any of those questions. What I do know is that despite my strong personal instinct for privacy, and the little cringe inside every time I put a post up, telling my story is something I can do. It’s not much, but it’s all I have, telling the truth about what it’s like. And the number 15, that’s the reason I have my cranky pants on.

These are not my cranky pants…these are my favourite pyjama pants. Happy M.E. Awareness Day.

M.E. Awareness Week 2010 - The Year In Review

Big thanks to Justin Sherman of the Brisbane Lions for supporting ME/CFS Awareness – our inaugural celeb. Former Lions player, Alastair Lynch, was a sufferer. Ta also to my sister-in-law for organising the pic.

For ME Awareness Week I’m reprising last year’s approach, which covered the main events relating to ME/CFS in the Western world. There is a collated list of other people blogging for ME Awareness in May here, add your name if you are too.

So. 2010 - what a year! Seriously! But I’ll endeavour to be brief, for my sake as well as yours. Here’s some of what went down…

THE USA: SCIENCE AND FORWARD MOVEMENT

XMRV

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) released a ground-breaking study suggesting a retrovirus called XMRV may possibly be implicated in ME/CFS.

Some feel this is a holy grail moment in the history of this illness, while others are more cautious. Most of us in the ME community are closely watching the science unfold. It’s early days yet, but if causation is able to be proven it will be a massive breakthrough.

Follow-up studies to the initial study did not seem promising, however they were not replication studies and used different technologies than the original study. As the WPI explain:

“Simply stated the only validated reliable methods for detecting XMRV in CFS patients, to date, are the methods described in Science. Failure to use these methods and validated reagents has resulted in the failure to detect XMRV. A failure to detect XMRV is not the same as absence of this virus in patients with CFS.”

A quick look at the authors and the patient cohorts speaks volumes. What is predictable is that the people who made notably negative utterances are the ones with the most to lose, those who have built careers on the psychiatric paradigm of ME/CFS. (Illness behaviour + deconditioning = disability, treatable with graded exercise/behavioural therapies.)

Annette Whittemore’s letter to Dr McClure summarises the issues of concern in relation to the negative studies after the WPI’s initial study. These concerns are regarding differences in patient cohort (an incredibly important issue in ME/CFS research) and differences in technique. I have enjoyed observing and learning from the patient community as they forensically dissect all the research as it comes out. The XMRV finding is a good news story for us. Whatever the final outcome, it has shone a much-needed spotlight onto biomedical research into ME/CFS.

If XMRV turns out not to be causative, the critical need for well-selected patient cohorts for future biomedical research will hopefully have been highlighted. The problem of diagnostic criteria used to select patients for research is an ongoing problem in the study of ME/CFS - until it’s addressed it’s hard to see how giant leaps forward can occur. I’ve said it before and I’ll say it again, all researchers should be using the Canadian Consensus Criteria. These were released in 2003 and it is outrageous that 7 years later this has not occurred. Yes, I’m a broken record.

Dr David Bell, long-time stalwart, has issued a personal appeal for donations to the WPI. He expresses great concern that the politics surrounding ME/CFS are now stifling research into XMRV. He’s been around for many years and has seen this happen before. He says:

“It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

and

“We cannot wait ten years for science to grind outs its conclusions.”

I urge you to read his letter and especially to consider his request for $10 donations to the WPI.

The XMRV discovery is such big news that I think we have to crown the USA as queen bee in the hive of interesting ME/CFS happenings this year. For more info on what’s new in XMRV see XMRV Buzz, updated by Cort Johnson. Interestingly, although they’re looking into it, the USA have not yet banned blood donations from people with ME/CFS as a precautionary measure to protect the blood supply, although other countries have.

THE CENTRES FOR DISEASE CONTROL. NOT CONTROLLING THE SPREAD OF ‘CFS’ SINCE…OH, FOREVER.

Meanwhile, at the CDC the times they are a changin’. Bill Reeves, boss of the CFS department, finally got himself ousted. Bill, Bill, we knew you well. We weren’t even surprised when immediately after the WPI’s XMRV study you said it would never be replicated. So pessimistic! Of course it wouldn’t be replicated, with you at the helm! Listening to your utterances was like watching the Titanic commence its slow descent into the deeps, in an alternate universe where the passengers were all safely on a life raft and waved at you happily as you disappeared from view. Goodbye and good riddance.

BIO BANKS

Two new bio banks are being established, each with slightly different approaches. This is awesome, bio banks represent exciting opportunities for future research.

One is being established by the CFIDS Association of America and is called the Solve CFS BioBank. The second bio bank is being established by the WPI, who state it will be the “world’s largest ME/CFS sample repository”.

Both projects look promising and are seeking donations.

CFSAC

The federal government’s Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting was held on May 10. As discussed on ProHealth:

“It’s a time of high tension in the ME/CFS community. Many wonder if and when CFS Advisory Committee (CFSAC) recommendations will be honored, whether meaningful research will be supported, and even whether this meeting may mark the Committee’s end (its charter expires in September).”

Mary Schweitzer is brilliant at expressing the issues, her excellent testimony is well worth reading or viewing. Annette Whittemore’s testimony is also worth reading or viewing. All written testimonies released before the meeting are here, and some spoken testimonies are here. Since I put this post up, the whole shebang is now available on YouTube and Hillary Johnson has written a totally fabulous and hilarious post on the meeting.

THE UK: PEDALLING BACKWARDS

The UK had a shocker last year and have followed it up this year with another. If the USA is 2010 queen bee, then the UK has to be terrorist drone bee. The rate at which things are going backwards is alarming. Last year the NICE guidelines were upheld. That was bad. The NICE guidelines tell NHS doctors how to (mis)treat patients.

THE USUAL SUSPECTS

This year the psych lobby mounted a rapid response to the initial XMRV study, pumping out dubious negative studies faster than I eat Vegemite on toast. The ubiquitous Simon Wessely was a naysayer:

"We're not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it there's nothing we're going to do about it. We're in the business of rehabilitation."

As alluded to in the US section, the shrinks in the UK who have built careers on the psychologising of ME/CFS via the creation of diluted diagnostic definitions were quick to offer up ‘their’ patients for XMRV research. The outcome was predictable. The studies did not find XMRV. This is why veterans like Dr David Bell are rightly concerned about the future of XMRV research.

UNUSUAL SUSPECT

Recently the British General Medical Council, after 9 years of sniper fire, finally took down Dr Sarah Myhill, an ME specialist greatly valued by her patients. Although the establishment seem to have been after her for years, no patient had been harmed or made a complaint against her. An ongoing issue appears to be that some GPs are unhappy with her for prescribing B12 injections. It beggars belief that this would be the impetus for yet another complaint since she’s been cleared so many times before, and indeed the GMC didn’t run with that again until the most recent complaint, this time about her website, instigated by a member of an online community of (self-described) sceptics devoted to fighting ‘bad science’. The complainant expressed his surprise that the GMC paid attention to his email, albeit in a hostile discussion thread where members dismiss Dr Myhill as a quack and her patients as unthinking acolytes. I'm pretty sceptical myself on the whole, so to me all this is sad. If they had turned their attention to the actual bad science rampant in the study and treatment of ME/CFS, they could be a great force for positive change, rather than needlessly taking away a doctor whom many depend upon.

It is hard to explain to people outside the ME community how thin on the ground good ME doctors are, how important they are to the patient community - often a beacon in a storm of medical apathy. At the GMC hearing Dr Myhill lost the right to prescribe.

“The judgement of the IOP was based on no charges, no evidence and no case. The IOP response was irrational and not evidence based. The sanctions are completely out of proportion to the allegations made.”

- Dr Sarah Myhill

Of my personal friends with ME in Australia, I barely know anyone who isn’t prescribed B12, so from this side of the pond it all seems bizarre. I was also astounded at the degree to which the GMC lack consistency. In January this year, a doctor involved in the death of numerous patients had a GMC hearing and only lost the right to prescribe opiates. In that case the GMC took into account the 200 letters of support from patients and colleagues. In Dr Myhill’s case, the GMC received 800 letters of support, but did not take these into account and went out of their way to state they made their judgement without “fear or favour”. There are far too many procedural anomalies in Dr Myhill’s case for me to detail here, but people have described the GMC as a ‘kangaroo court’ and unfortunately it seems an apt description.

SMALL VINDICATION

On the bright side, the FINE trial failed. Hallelujah. This was a long-term, government-funded study into nurse-led CBT and GET approaches (cognitive behavioural/graded exercise therapies) and cost over a million pounds. They could have used that money for something useful, like biomedical research, but instead they used it to find out what we could have told them all along. It’s immensely frustrating. Hopefully the failure of the trial will induce someone in their bureaucratic ivory tower to see sense very soon. As Invest in M.E. said, “The FINE trials and the PACE trials seem to be the two ugly sisters of MRC policy on ME - leaving biomedical research eternally to play a Cinderella role.”

LIGHTS, CAMERA…

In other good news in the UK there is a doco about M.E. being made which looks like it’s going to be a ripper. Stay tuned.

AUSTRALIA: NOTHING TO SEE HERE

In light of the potential XMRV link, the Australian Red Cross amended their blood donation guidelines. Anyone ever diagnosed with ME/CFS is indefinitely deferred from making donations, whereas previously patients were only banned until ‘full recovery’. I think the revised approach is prudent, it’s better to be safe than sorry when it comes to protecting the blood supply.

The Australian Red Cross ban on donations has been reported in some places as if this were new, but the policy of not accepting donations unless an ME/CFS patient had made a full recovery, which had to be confirmed in a letter from the treating doctor, is long-standing. They will review the current arrangement in 2 years time.

ME/CFS Australia has a new management structure and is now to be administered by the Victorian group, which has access to more resources. ME/CFS Australia has a good blog (though infrequently updated, not that I can talk) and released a concise article about how dismally the Australian health system fails people with ME/CFS:

“Government funded ME/CFS research is approximately $1 per patient (compared to $400 for each AIDS patient)…

and

…Despite ME/CFS becoming prominent in the last 25 years, there are no Government-funded specialty programs treating people with ME/CFS (there are some fatigue clinics) and there is no Government-funded clinical or epidemiological research being conducted in Australia.”

Charmed, I’m sure. They care enough to stop healthy people receiving blood from our pestilent selves, but are otherwise leaving us to rot in our bedrooms.

NEW ZEALAND

New Zealand has also reviewed their blood donation guidelines:

“New Zealand's blood banks plan to reject donors with a record of chronic fatigue syndrome (CFS). The move follows research overseas which has raised concerns about the potential for a recently identified virus XMRV to spread through blood transfusions.”

CANADA: WE LOVE YOU

Canada has also banned blood donation from people with ME, and were the first country to do so. This year Canada officially recognised ME as a neurological illness. This is in alignment with the World Health Organisation’s categorisation of the illness since 1969.

They already have the world’s best guidelines for diagnosis and treatment, and now ME is formally recognised as a neurological illness which has major implications for welfare support and access to medical care. I'm sure it's a long way from being all roses for patients over there, but mad props for big steps in the right direction. Let’s all move and become patients of Dr Byron Hyde, shall we? I’ll start learning the anthem.

THAT’S ALL, FOLKS

I haven’t covered everything, just the major stories, and even then not in depth. Feel free to add any additional 2010 ME/CFS happenings in the comments. What have I missed that deserves mention?

Thanks for taking the time to read. I know this is not everyone’s cup of tea, and to be frank, I wish it weren’t mine, either, but I am passionate about fighting for improved quality of life for people with ME. When we’re both up to it, my good friend and I have short chats, he is very ill and sick in bed for some years now. His illness has progressed from moderate to severe, despite his diligence in seeking treatment. He is brave, never complains, and jokes that ‘CFS’ is short for ‘Chronically F***ed Situation’. I feel helpless in the face of his suffering and would do anything to be able to wave a magic wand to make things better. I’d love for him to be able to surf in the ocean, build things, drive his ute wherever he wants. It’s ordinary people like us who get this disease: anyone, any day, out of the blue. It was me, it was him, it could be you. Our story could be your story.

It doesn’t have to be this way. Good research can and will help, I dearly want to see progress in my lifetime. Please consider donating time or funds to one of the research organisations mentioned in this post, or doing whatever you can to raise awareness. If you blog, tweet or chat on facebook you can mention ME Awareness. I also have some blue ribbons, if anyone in Australia would like to spread the blue ribbon love, email a postal address and it’ll be on its way. (I have 2 left!)

Doco about M.E.

Been meaning to post this for a little while, but got distracted.

My friend Nasim recently blogged about an impending doco; it looks like it’s going to be excellent. Nasim and others are interviewed, and our long-time champion Professor Malcolm Hooper is absolutely sterling.

Watch the trailer!

And if you’re inspired, you can get involved.

I don’t want to detract from the trailer, but if you’re interested in some historical context about the Lake Tahoe outbreak, here’s a longer Prime Time Live story on ME/CFS, circa 1996. When it was shown in the US I’d been sick for a year - I wish I knew all this stuff back then, rather than feeling stranded in the wilderness of illness, trying to understand how I’d evaporated from my normal life and become a wraith who drifted in and out of a bedroom.

Watching both bits of film, one made so many years later, it’s bizarre to see how little has changed. Why do we persist with advocacy, despite the decades of apathy? I like what the first trailer says:

“Why should we care?

Because it could be you.”