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OurSay: when chronic fatigue isn’t taken seriously

If you woke up today with chronic pain, fatigue, dizziness, nausea and spatial disorientation, just getting out of bed would be a challenge. What if you made it to the doctor only to be told there was no cure, some people might think it was “all in your head”, and there was perhaps not much help out there. This appears to be the story for thousands of chronic fatigue suffers in Australia.

OurSay user Peter Evans spoke of this “disability discrimination” for the Grill the Independents forum, which gives people the chance to post, vote and comment on questions that will be asked to the lower house independents by Crikey next month. Evan’s question is currently number two:

ME (Myalgic Encephalomyelitis), sometimes derogatorily referred to as chronic fatigue syndrome, affects about 90,000 Australians on current prevalence rates. It can be lifelong, severe to the point of needing help with personal care and costs the community hundreds of millions of dollars a year. Despite this, the federal government through the National Health and Medical Research Council has only ever funded one significant medical research project into the illness. Why is more not being done?”

The Australian government might be sensitive to the plight of those with a disability, but when it comes to providing real monetary support to organisations and research facilities that deal with lesser-known conditions, that sympathy could dry up. To find out more, Crikey contacted OurSay user and commenter Annie Wilson, a former teacher who was forced to leave the workforce in order to care for her 13-year-old child who suffers from ME/CFS.

It just really frustrates me that there is a complete lack of awareness about what to do. So little is known, there is no clear evidence, we were just left with the diagnosis, and off you go,” Wilson said.

She explained that it was only after she started her own blog and began researching treatments in the US that she came across a medication that might help to ease her daughters incapacitating symptoms. ”Schools have no idea what’s actually going on in her body. As a parent I am trying to educate myself and educate others at the same time.”

Wilson spoke of the severe lag in government funding towards research on ME/CFS and described how difficult it was to lobby for action when you or your child was affected. ”It’s hard for some to even look at a computer screen for more than five minutes,” she said.

Since 2000, the NHMRC has given $1.4 million to research projects into ME/CFS, compared to $25.1 million for Juvenile Diabetes Research or $48.4 million towards the national GP Asthma Initiative in 2001.

Long-term ME/CFS sufferer Leah Jasmine, who also commented on OurSay, believes the government’s reluctance to acknowledge ME/CFS as a valid disability which impairs the lives of so many, reflects their general lack of interest in dealing with this complex and highly individualised illness.

You call up asking for help only to discover the people with ME/CFS are not on the list for help. It’s just not good enough,” Jasmine said.

When Jasmine became ill with ME/CFS at four years old, doctors literally shrugged their shoulders and told her parents that she had “a rare as yet undiagnosed cancer” and would be unlikely to live beyond her eighth birthday. She says that even now it takes on average five years to diagnose the disease, which means that there could be thousands of sufferers living with ME/CFS in Australia without access to vital treatment services.

Jasmine says that ME/CFS is in fact an umbrella diagnosis that is indicative of the universal confusion and lack of knowledge about its neurological basis. She explains that key medical bodies withhold their findings because they want to be the first to discover a “cure” in order to claim back money for their research. ”There is no unified research body, which is what is needed to put all the pieces of the puzzle together,” she said.

According to a speech by Christine Hunter, whose 19 year old daughter Alison died from the disease, the shift to the name “Chronic Fatigue Syndrome” in 1988 has encouraged the dismissal, scorn and medical neglect so often endured by people with ME/CFS who have sometimes been told the symptoms are all in their head.

The emphasis of ‘fatigue’ (weariness) at the expense of the cardinal neurological, gastrointestinal, cardiac and myoarthralgic features trivialises the substantial disability of ME. Often sufferers are bound to their bed or a wheel chair, requiring 24 hour care,” Hunter said in the speech.

Crikey contacted the Australian Medical Association, who said that they did not have a specific policy on ME/CFS.

The three most popular questions from the OurSay forum will be put to the independents on September 12 by Crikey’s Canberra correspondent Bernard Keane. Entries and voting closes at 5pm on September 7.

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  • 1
    Miles Nola
    Posted Wednesday, 22 August 2012 at 3:30 pm | Permalink

    Unfortunately there is such confusion as to the name. Chronic Fatigue is just that - a symptom of many illnesses. It is completely different to Chronic Fatigue Syndrome which includes as one of its many symptoms being chronically fatigued. In Australia Myalgic Encephalomyelitis is also known as Chronic Fatigue Syndrome. ME is listed as a Neurological disorder - ICD 10, G.93.3, World Health Organisation (WHO) 1969

    Australian Governments of all persuasions have had many years to provide real monetary support to the biomedical research and support and education services. Something - politics or bureaucracy always seems to get in the way. It is well past time funding provide even a basic level of support to the 180,000 Australians estimated to be suffering.

    All government departments, agencies and assistance programs should be aware of
    i) the 2005 ME/CFS Overview of the Canadian Consensus document or
    ii)the more recent 2011 ME: International Consensus Criteria or
    iii) for FM the 2005 FM Overview of the Canadian Consensus document. (These are internationally recognised documents.)
    If they were - and there is no reason why they are not- then patients would at least get some equality in the level of recognition and support.

    I am in the unique situation where have seen first hand the treatment given to someone with multiple stroke/heart attack compared to that of someone with ME/CFS. The contrast is stark!

    How many more years do we need to suffer - and how many more people have to die through lack of basic rights?

  • 2
    Posted Wednesday, 22 August 2012 at 6:20 pm | Permalink

    It’s good to see this question out in the open. M.E. sufferers have great difficulty advocating for themselves, since they have so little energy or concentration. If you’ve ever had a device with a dodgy battery, M.E. is a bit like that: whenever you try to do something, your system shuts you down. You have to divide even very simple everyday tasks into tiny slices, and do them with breaks. I’ve has this disease for nearly 20 years, gone from someone with a job I loved and a very active lifestyle to someone stuck in bed or a chair, groping foggily for words, sometimes not remembering my own name. I can manage one shower per week. For those of you who read my comments, they take a LONG time to write. God bless computers: without them, we’d be stuck staring at the wall all day.

    M.E. is similar to M.S., and needs the same level of research and support. Find a cure or decent treatment, and you could get us out of these damned beds and chairs, get our young people out of nursing homes, get our minds and bodies working better so we can contribute again. We will literally try ANYTHING. Help us, please!

    (For more info on M.E. (including diagnosis, activity levels, survival tips and case studies), see hfme.org.)

  • 3
    Peter Lange
    Posted Wednesday, 22 August 2012 at 10:16 pm | Permalink

    There were three points in this article for which I would like to see proof before accepting. That someone has died of the condition, that people reside in nursing homes because of the condition, and that organisations are withholding research results for financial gain. To my knowledge, none of these have ever been proven or even reasonably suspected.

    Crikey and Sarah Duggan lift your game.

    And by the way, the article fails to make reference to the proven treatment for the condition, CBT and graded exercise therapy. Was anyone but a group of sufferers and their carers consulted for this? Poor.

  • 4
    Miles Nola
    Posted Wednesday, 22 August 2012 at 10:34 pm | Permalink

    Apart from Alison Hunter who is mentioned above, please check out the following article re the first official death in the UK http://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome.html

    CBT and graded exercise therapy should only be done under extreme caution as they can cause an exacerbation and deterioration in the condition. Do you ask someone with a broken leg to try walking on it?

    Crikey says they did contact the AMA….

    I’m not sure that Peter Lange knows all that much about ME/CFS. The comments absolutely highlights the desperate need to educate the community on what ME/CFS actually is.

  • 5
    Peter Lange
    Posted Thursday, 23 August 2012 at 12:06 pm | Permalink

    Thank you for the reply, I was not aware people had sadly succumbed to the complications of cfs/me. I would yet like to see cases of young people in nursing homes due to the syndrome.

    I stand by my contention that this article, or whatever it actually is as this is not clear either, is unbalanced, poorly researched and deliberately inflammatory. This is not what I expect from Crikey.

  • 6
    Ootz
    Posted Thursday, 23 August 2012 at 2:10 pm | Permalink

    Crickey, “about 90,000 Australians on current prevalence rates” are affected by CFS/ME and Peter Lange wants to see dead bodies and young people in nursing homes to take this illness seriously. For your information, several of my many Doctors over the years summarised the situation by stating that CFS/ME is just not ‘sexy’ enough to get the required funding to simply even research what exactly brings it on. I my case there was evidence of Epstein Barr virus at the onset of it more than 20 years ago. However, the link with that virus too is very tenuous, we simply do not know enough about what brings it on. Thus, the condition cannot be labelled a ‘disease’ and as such is commonly belittled and not taken seriously. Let me assure you my pain is real, my loss of income is real, my sense of loss is real, the stress on my partner, my cost of medical support is real, the overall loss of productivity is real.

    Sure CBT is a great help to cope with the situation (but not to solve the problem) as is graded exercise. However, you need access to practitioners experienced with the unique needs of CFS/ME patience which are not that easy to find particularly if you live in the regions.

    Quoting from Medical Journal of Australia on CFS
    “The financial impact of CFS on those affected and on the community has been evaluated.22 A conservative Australian estimate of the direct costs (those incurred in diagnosis and management) was $1936 per case per annum (in 1988/89 dollars). After inclusion of indirect costs (from lost productivity associated with the disorder) the aggregate annual cost of CFS was $9436 per case (1988/89 dollars). In 2000/01 dollars, this represents a direct cost of $2764 per case and an annual aggregate cost of $13 471 to the community. Based on a conservative assumption of a community prevalence of CFS of 0.2% (200 cases per 100 000 population), this implies an annual cost to the Australian community of $525 million.”

    BTW Peter Lange, I find your comments unbalanced, poorly researched and deliberately inflammatory. It may not be your intention, but that is how it comes across to a CFS/ME affected person like me.

  • 7
    Mark McDermott
    Posted Thursday, 23 August 2012 at 4:01 pm | Permalink

    Peter Lange, GET YOUR FACTS RIGHT before attacking either Crikey or its author. you only make yourself look like the ignorant person you are. To quote you, LIFT YOUR GAME!

    My brother a long suffer victim of ME/CFS took his own life as a result of the disease.

    We have rallied for years to lift Government funding but it just doesn’t get the recognition it requires. It’s great that someone in this case the author Sarah Duggan has raised the issue on this medium, I’m sure Miles and Clytie will agree.

    I think the piece was well written and for all other sufferers of this debilitating disease look at name-us.org
    these guys do great work for suffers.

    Clearly the author was focusing on the suffers point of view, but being the literary genius you are, you would have understood that anyway.

  • 8
    Peter Evans
    Posted Thursday, 23 August 2012 at 9:22 pm | Permalink

    You can read about severe cases of children with ME from the abstract of a paper presented by paediatrician Dr David Bell:

    http://www.ahmf.org/betrayal_app10.html

    Note the tubefeeding of one of the children. The child of a friend of mine was so ill she had to be spoonfed for a number of months.

    The use of CBT and graded exercise is not proven and has been the
    source of numerous complaints of patient harm. A recent study reported
    that patients in the trial got physically worse:

    http://www.ncbi.nlm.nih.gov/pubmed?term=nunez%20chronic%20fatigue

  • 9
    Kewley Andrew
    Posted Friday, 24 August 2012 at 2:46 pm | Permalink

    Peter Lange seems to be setting up a strange strawman - most young people with the condition are not in nursing homes because they are cared for by their family. This is one of the costs considered in the various economic cost studies.
    A 2004 estimate for the USA based on a large population based study was $18-25 billion per year.

    In terms of withheld research, the problem is that the government funds very little, most research is done privately and some of these research findings are tightly held onto/patented. (example, the data from the phase-3 Ampligen study has only been partly published and was only published this year, many years after the trial finished - and this is a trial that had positive results)

    Nevertheless, the real problem is that CFS has long been trapped in a catch-22. Little research interest means that there are few findings to excite external researchers. My submission to the McKeon review (independent review of medical research in Australia, commissioned by the Health minister) analysed disease burden data (AIHW data) and the NHMRC funding data and found that CFS was funded at a magnitude of order lower than would be expected based on the disease burden. If CFS was funded along the lines of most other conditions, it would receive twenty times the research funding in both the USA and Australia.

    Nevertheless, there are a few good people doing research.
    Researchers in this field often give serendipitous stories, for example the oncologists in Norway who found that patients (with non-hodkins lymphoma) were recovering after taking Methotrexate. They were convinced to do further study leading to the impressive results of the Rituximab (B-cell ablation therapy) double blinded study they published last year. They are now following this up with a much larger study and also some smaller studies with related drugs. The problem is that they are having trouble getting full funding for the much larger trial - the drug company is no longer funding trials as it is coming off patent in a few years.

    Unfortunately, these drugs are not a long term solution, but they should at the very least create some excitement in the field.

  • 10
    Peter Lange
    Posted Sunday, 26 August 2012 at 9:21 am | Permalink

    Thank you to those who have provided much information.

    My comments are about the quality of the journalism. Some commenters have done much to correct this. The original article would have benefited from their input, and would have raised it to the usual Crikey standard.

  • 11
    Peter Evans
    Posted Monday, 27 August 2012 at 2:24 pm | Permalink

    Peter,

    Thank you for having an open mind about this. I actually sympathise greatly with doctors trying to deal with this illness. It has been given a silly name by the CDC and most practising doctors never heard anything about it in their medical course. No speciality has been able to claim it and thus GPs are left to their own devices and information is spread across many different (and often obscure)) journals.

    The situation is not helped by a very determined effort over the last 20 years of a group of psychiatrists in the UK and Holland to claim the illness for psychiatry and inflict CBT/Graded exercise on patients. These efforts are strongly resented by most of the patients and have produced some misleading studies. I understand there have been numerous complaints of harm to the various patient associations in the UK but the patient complaints have simply been ignored by the various authorities there.

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