Fighting Disbelief: Chronic Fatigue Syndrome
I kept having these episodes where I would lose all voluntary movement. I was still aware of what was happening around me, but I just couldn’t respond. Nightmares are made of that. The doctors kept telling me “you’re fine, there’s nothing wrong”. When you say chronic fatigue it’s like, oh yuppie flu. Nobody’s believed them, everybody’s insulted them and defamed them, made them out to be crazy people. It’s a genuine concern that patients who do have chronic fatigue syndrome really experience prejudices when they seek medical care. One of the big efforts right now is to find what they call a biomarker. Hopefully that will show the legitimacy of the illness. I felt like I had to continue. I felt like if I stopped I’d be killing people. It’s just like pushing every fibre of my being to get up the top. Susan used to run 2 kilometres in under 10 minutes. Now it takes her that long to climb the stairs to her apartment. I served in the Royal Australian Signals Corps in a job that I loved. I loved being outdoors, working hard, getting dirty. Susan served in the army for 8 years and then took off around the world. It was the summer of 2011-2012 that I had the trip of a lifetime, with a friend of mine. Abby and I climbed this incredible active volcano. It was like sitting really far away from a really giant camp fire It was soon after Susan got home that her life changed. I had a minor surgery and got a pretty nasty infection and I spent a few days in hospital on antibiotics. I came home and I was sitting at the dining table feeling quite light headed and dizzy and within 10 minutes it was like I had drunk a litre of vodka. And I was losing all voluntary movement. Susan spent weeks in hospital where doctors ran a raft of tests. But it took her six months to finally get a diagnosis. My GP referred me to a rheumatologist and he said absolutely, you have chronic fatigue syndrome. Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis or MECFS, can affect a range of functions in the body from the nervous system to the immune system. It’s estimated that around 200,000 Australians have CFS. A quarter of those are house-bound or bed-bound. Currently there is no diagnostic test and no cure for CFS. And it’s a condition that has long been surrounded by controversy. Historically a lot of people would think that it was in patient’s mind, that life had overwhelmed them, they’ve taken to their bed and then they’ve just got scared by the outside world. When someone says, “Oh what’s wrong?’ “I have chronic fatigue syndrome.” “Oh I get tired too, I get tired too.” “Oh you should try having kids” they say. Well it is not in the same ball park. Patients don’t experience fatigue, what they experience is actually like a kind of a paralytic exhaustion. They barely can move. Living in my body is like balancing on a tightrope or juggling five balls at once. When Facebook throws up some old feeds of like this is what happend two years ago or one year ago and you go, “Wow.” She was energetic. Very much alive physically. Angela had just published a cookbook and was touring it around Australia when she got sick. I stopped being able to walk up stairs. I stopped being able to lift my arms above my head. Angela was eventually diagnosed with ME/CFS. I think it’s been a year or maybe a year and half now since I was last able to walk. I haven’t been outside in maybe three months. It’s quite devastating to look at someone that had got so much potential and is just trapped in a body that does want to share the same potential. Today we give an assurance to all Australian’s who live with a disability disability care Australia will be here when you need it. In 2013 the Gillard government brought the National Disability Insurance Scheme into law. I was so excited. I was so excited about the NDIS. Applying for the NDIS gave her so much hope. A couple of months passed and then Susan’s application to the NDIS was rejected. I was deemed insufficiently incapacitated. She was crushed when she received that rejection. I spend the vast majority of my day on this sofa. Susan is someone who really lives with a significant disability and really struggles having a shower, making dinner, going to the shops. We’re finding that people who have really substantial disabilities are being rejected from the NDIS. I am worse off under the NDIS. I had services that I relied on cut. Susan isn’t the only one to experience this. Not only are they rejected from whatever else was in their plan on NDIS, but they literally have their other support services immediately terminated. That was pretty heartbreaking. In the rejection letter from the NDIA the government agency responsible for the NDIS it was argued that Susan does not have a “substantial reduction in functional capacity”. For them to reject me without having seen me try to get around in the world, blows my mind. I can only think of one patient I have that is more disabled than Susan and I have lots of patients who you know quite rightfully are receiving support from the NDIS. The NDIA also argued that Susan was ineligible because she did not have a permanent condition. It’s been almost 6 years for Susan and she’s been slowly deteriorating, so I’m not feeling confident that she’s going to improve. I’ve seen a large number specialists and no one has been able to make me better. The idea that it’s got to be permanent, otherwise you don’t get disability pension or you don’t get NDIS support, this is complete and utter nonsense. Susan appealed the decision but the rejection was upheld. They were saying that they knew better than the international experts in this field Professor Marshall-Gradisnik and her team have identified so-called bio-markers that could be the key to understanding the cause of chronic fatigue syndrome. So the receptors we’ve identified are known as threat receptors and they are activated by viruses, bacteria. When you are exposed to a number of these different stimuli, if you have a specific pre-disposition that we’ve identified, it may then cause the development of chronic fatigue syndrome. If successful, the research could make it possible to diagnose chronic fatigue syndrome with a blood test. We’re cautious but we’re hopeful. In a document obtained by The Feed the NDIA claimed chronic fatigue syndrome is not a permanent condition for this reason: This is crazy-making, this is, insane. David Tuller is visiting Australia to report on issues around chronic fatigue syndrome. He started writing about the condition for the New York Times about 10 years ago. During this time a trial called the PACE trial was published in the UK. This was the trial that purported to have proven that cognitive behaviour therapy and graded exercise therapy were effective treatments. The trial reported that 22% of CFS patients recovered with these treatments. But when the data was re-analysed by independent researchers the recovery rate fell to 7%. And those rates were not really different from the rates in the untreated #### so basically they had no recovery whatsoever. The three main investigators of the PACE trial have all had longstanding relationships with disability insurance companies. These people had a very serious vested interest that they did not disclose to patients in proving that these treatments “worked” and that’s the basis of NDIA saying well you can recover from these treatments. The NDIA declined an interview for this story. In a written statement, a spokesperson for the NDIA said: “An individual’s impairment may be considered permanent when all known, evidence-based treatments have been exhausted.” People are been rejected because they haven’t undergone graded exercise therapy. At best it’s controversial, at worst it’s actively harmful. When they do surveys of patients who have done graded exercise therapy many more of them report that they suffered serious relapses and sometimes permanent relapses, then that they got better. There is some evidence that it does work for some patients But again, we shouldn’t be making blanket recommendations anymore. Angela was rejected by the NDIS once, and then reapplied. It was only after she was admitted to hospital for 40 days that her application was finally approved. Maybe if I had of been diagnosed and given the support that I needed sooner I would have had the functionality to be able to maybe get pregnant and raise a child. And I don’t know if I’ll be able to do that now. Susan is currently completing a PHD part time and runs a campaign to prosecute sex crimes in conflict zones. I run the website from my sofa I write briefs from my sofa. Hey David, it’s lovely to meet you! So is your case the first that’s gone to this level about ME? Yeah, and I’m pretty sure, I mean I don’t want to… count my chickens before they’ve hatched. Susan is challenging her NDIS rejection at the administrative appeals tribunal. It could set a precedent for thousands of people with chronic fatigue syndrome. I agree that there’s a limited pool of money and I agree that the line has to be drawn somewhere. But it doesn’t mean that you can take a whole load of people, who meet the criteria and just exclude them on the basis that they have the wrong kind of condition. Do you have any hope for a cure? Or for recovery at this point? You know sometimes I still dream about getting back to the Congo. But it would seem to me that this is my lot now. And I just need to make what I can with this lot. I want to say no one is fighting for us, but you’re fighting for us. I got an email from a patient saying fewer of us are going to kill ourselves this holiday season because of your work. I felt like if I stopped I’d be killing people. David met with a senior representative of the NDIA and put the case for recognising CFS as a permanent condition. The NDIA did not wish to comment on the meeting. I think that NDIS is a very forward thinking proactive piece of legislation and I think that Australia is doing a lot of things right, by trying this. I could help fulfil that hope of the NDIS where people of all different abilities are able to participate in the economy, are able to contribute to our community life. I have so much to be able to give even with this condition But I need help.