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, both of whom may want or need extra info, and a resource like ME/CFS Australia is an excellent starting point for both the patient and their GP – the info 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 yet, 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 feel it was the right time, 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 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 men 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. 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 at the time.

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 OK. But overall the guidelines 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 from many sectors of the UK health-care profession was robust and thorough. The compilation of this criticism makes heartening reading:

It almost seems that a select group of psychiatrists with a polarised view of this complex condition is directing the development of the guideline from ‘behind the scenes’.

- Association of British Neurologists

They said it…

Despite all this brouhaha, in January Dr Sarah Myhill, Dr Norman Booth and John McLaren-Howard published a very interesting study in the International Journal of Clinical and Experimental Medicine, 'Chronic Fatigue Syndrome and Mitochondrial Dysfunction':

This study aims to improve the health of patients suffering from chronic fatigue syndrome (CFS) by interventions based on the biochemistry of the illness, specifically the function of mitochondria in producing ATP (adenosine triphosphate), the energy currency for all body functions, and recycling ADP (adenosine diphosphate) to replenish the ATP supply as needed.

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 is the most realistic alternative to the other diluted CFS definitions. It’s the best mainstream definition currently available, and the accompanying guidelines for treatment and diagnosis offer a thorough and evidence-based approach to assisting patients. The reality is that the US CDC has enormous influence, and if it formally 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.