12 MAY 2023 PREFACE
12 May 2016 was a different time. COVID-19 didn’t exist, I had a different surname, we were all still referencing Serial, and the PACE trial hadn’t been made to release their data yet. But sadly, a lot of the facts I reported in my audio documentary on ME/CFS, ‘May the 12th Be With You’, are still relevant.
I released the short doco on my podcast and on 4ZZZfm Community Radio Brisbane on the 12th of May 2016, the annual awareness day for myalgic encephalomyelitis/chronic fatigue syndrome. I live with ME/CFS, like hundreds of thousands of other people in Australia. It is debilitating and we only face more challenges with the ongoing SARS-CoV-2 pandemic. I’m hoping the new patient population of people with long covid, another debilitating disease with a lot of overlap with the ME/CFS patient population, can benefit from the existing decades of advocacy being done by people with ME/CFS.
May The 12th Be With You is a brief overview of ME/CFS – the disease’s impact on people, the history of the diagnosis, and the controversial treatments. I tell it with a light touch in keeping with the vibe of my podcast, Just A Spoonful, hoping to intrigue newcomers with this medical mystery. I even commissioned a musician to record a ‘Serial-style’ cover of the Just A Spoonful theme song, ‘Sleepless’ by Anna O.
This is an independent documentary that I completely researched, wrote, recorded, produced and edited myself. I was able to make it thanks to the financial support of my Patreon. I made it on a shoestring and everyone you hear on it volunteered their time just to raise awareness. If I made it over again, I would do some things different – I would talk about post-exertional malaise, and I would perhaps not go so easy on graded exercise therapy. I could not include everything I wanted to say in this short doco, and I was of course battling through fatigue and cognitive dysfunction to make it. I’m grateful to everyone who listens to it, and to all the other ME/CFS advocates who have taught me so much and who keep fighting for a better quality of life for everyone with this disease.
You can listen to the 19-minute documentary on my Soundcloud or anywhere you listen to Just A Spoonful podcast.
Here’s the transcript of ‘May The 12th Be With You’, 12 May 2016.
In order of appearance: Kaitlyn Blythe, Suze Mackenzie, Russell Fleming, Lefa Singleton Norton, Sasha Nimmo, Ricky Gervais [stand-up recording], Nathan Butler.
Kaitlyn Blythe 00:00
[Serial-style piano cover of ‘Sleepless’ by Anna O.] From the Just A Spoonful podcast in my house in Brisbane, it’s May The 12th Be With You. One medical mystery told over one episode, I’m Kaitlyn Plyley. It debilitates anywhere between 92,000 and 598,000 Australians, and more than 28 million people worldwide. But do we really know what chronic fatigue syndrome is? [Pensive music.]
Suze Mackenzie 00:44
As so many people’s story is, I’d been overdoing it and I was working full time, studying part time for my master’s, playing sport.
Russell Fleming 00:53
I think I was 29.
Lefa Singleton Norton 00:55
I still remember the day really clearly,
Suze Mackenzie 00:57
I even fell up the steps of a tram, I was that exhausted.
Russell Fleming 01:00
It was a rapid onset.
Lefa Singleton Norton 01:02
I’m having a breakdown.
Suze Mackenzie 01:05
I just can’t move. It must be some kind of neurological thing happening in my body. I don’t know.
Russell Fleming 01:12
You know, when they offered me an ill, an ill health retirement pension, I couldn’t believe it.
Sasha Nimmo 01:19
You’re going to be this sick for probably the rest of your life and your life expectancy will probably be about 25 years shorter.
Kaitlyn Blythe 01:39
There isn’t even widespread agreement on what to call it.
Russell Fleming 01:42
Suze Mackenzie 01:44
Chronic fatigue syndrome.
Sasha Nimmo 01:45
Kaitlyn Blythe 01:46
And I’ve been calling it “encephalomyelitis” [where the “c” is pronounced like an “s”] for all these years. Whoops. For the purposes of this story, I’ll say ME/CFS, but I acknowledge that even that label is contentious.
For context on the prevalence and impact of ME/CFS. It is most often compared to multiple sclerosis, known as MS, for having a similar devastating effect on patients’ bodies. Both ME/CFS and MS are classified as diseases of the central nervous system by the World Health Organisation. Both can be fatal. 2.5 million people are living with MS worldwide – 25.5 million less than the lowest estimate of people living with ME/CFS. Around 23,000 Australians have MS – and remember, the lowest estimate of Australians with ME/CFS is 92,000. Yet MS is the subject of much research and widespread awareness campaigns. Remember the MS Readathon? I did it every year in primary school. But there is a little awareness of ME/CFS. Worse, there are widespread misperceptions and stigma.
Ricky Gervais [stand-up recording] 02:49
Saw someone collecting the other day for ME. Not MS. Not the crippling wasting disease. Oh, no, ME. That’s the one where, don’t feel like going to work today. [Audience laughs. Gervais imitates a phone ringing and affects a mocking voice.] “Oh, ME!”
Kaitlyn Blythe 03:06
[Hopeful music.] Where did these misperceptions come from? Why is there so much confusion around this diagnosis? May the 12th Be With You hopes to clear up some of the confusion, or at least explain why it exists. In the next segment, I’ll investigate why these patients have been left behind. It’s a story that goes back decades and, at times, makes very little sense. [END OF SEGMENT 1/3]
Kaitlyn Blythe 00:00
So why are potentially hundreds of thousands of Australians stuck in their beds, stuck in their houses, with disabling fatigue and pain, unable to participate fully in life? Why are they being overlooked? And why are they sick? ME/CFS has no collective diagnostic criteria. That means that doctors around the world and even within Australia are not all working off the same list of symptoms. There are like half a dozen different diagnostic criteria floating around. So a person could be diagnosed in Australia with ME/CFS in say, 2002 for example, like me, and have received very different treatment to someone diagnosed with ME/CFS in say the UK three years earlier in
Russell Fleming 00:44
Kaitlyn Blythe 00:44
That’s the voice of Russell Fleming, a UK based ME consultant Skyping in from Cornwall to chat to me. He is a friendly ex banker who had to leave his full time job because of the disease, and now uses what energy he has to do ME advocacy work. He repeatedly apologized for not being able to speak as concisely as he would have liked – something nearly everyone I interviewed for this story apologised for, including me. Cognitive difficulties and concentration problems are one of the symptoms of MECFS, and we all have it. However, it doesn’t affect our knowledge or expertise. It’s more like all the information is still filed away in the stacks, but we can’t find the index cards. Russell and I compared notes on our diagnoses. The label that my Australian doctor wrote down in 2002 was chronic fatigue syndrome. But Russell was diagnosed with myalgic encephalomyelitis by a UK doctor in 1999. So that’s like, three year gap and very different names.
Russell Fleming 01:43
Well, the name myalgic encephalomyelitis has always traditionally been the name since Melvin Ramsey first started talking about it in the 1950s-60s.
Kaitlyn Blythe 01:54
Dr Melvin Ramsey was an infectious disease specialist who was an outstanding authority on ME until his death in 1990. He was present for an outbreak of the illness at the Royal Free Hospital in London in 1955, which precipitated Ramsay’s research into the disease and increased worldwide interest in ME. Ramsey called it a baffling syndrome with a tragic aftermath.
Russell Fleming 02:17
He concluded that, you know, in his opinion, there seem to be some sort of inflammation going on within the brain.
Kaitlyn Blythe 02:25
The inflammation of the brain theory, from which the name myalgic encephalomyelitis comes, has not been borne out by subsequent research. But Ramsey was correct in identifying that there was a physical cause for this condition. His definition didn’t last long, though, because, in Russell’s words,
Russell Fleming 02:43
“A couple of psychiatrists got hold of it. And they decided it wasn’t that at all.”
Kaitlyn Blythe 02:50
Those psychiatrists were Colin P McEvedy and AW Beard, who in 1970 proposed that ME was actually a psychosocial phenomenon caused by mass hysteria.
Russell Fleming 03:01
And out of that became “chronic fatigue syndrome”.
Kaitlyn Blythe 03:04
Their conclusions were later refuted, and in 1978 the Royal Society of Medicine concluded that ME is a distinct disease entity.
Russell Fleming 03:12
And in about 2007 the National Institute of Clinical Excellence, or “NICE”, produced a guideline, and we have “ME/CFS”.
Kaitlyn Blythe 03:25
But the stigma continues to stick to the diagnosis, and has influenced many of the sets of criteria that inform your local GP on what to think. You can see how it would be tempting for healthcare providers to believe that ME/CFS is simply psychosomatic. Then you can locate the so-called “problem” with the patient, explaining chronic and baffling symptoms with the reasoning that the patient on some level wants to be sick. Recognizing ME/CFS as a physical disease has also met resistance throughout the decades due to other factors, like medical insurance companies benefiting from not having to cover a psychosocial illness, or government welfare departments not having to pay pensions to people with ME/CFS if it’s just “all in their head” (never mind the damage that those attitudes do to people with mental illnesses).
Back to Melvin Ramsey, who up until the final year of his life was deeply concerned with the confusion surrounding an MECFS diagnosis. To quote him: “The failure to agree on firm diagnostic criteria has distorted the database for epidemiological and other research, thus denying recognition of the unique epidemiological pattern of myalgic encephalomyelitis,” end quote,. There is still no test for ME/CFS. A diagnosis of the disease is a diagnosis by elimination, ruling out all other known illnesses. In March this year, Griffith University’s National Centre for Neuroimmunology and Emerging Diseases announced that they had quote, “identified new markers that can be used to screen patients,” end quote. I contacted the Centre for comment but they were unavailable and called me “Rebecca”.
If Griffith University’s researchers have indeed found that biomarker that the ME/CFS community has been waiting for, then this is a big deal for Griffith University. Groundbreaking research that could help millions being done right here in Brisbane. It’s incredible to think that this progress is happening right down the road from me. However, there are still many hoops for the scientists to jump through before their research becomes anything resembling a medical test. All going well, we’re still years off being able to screen for ME/CFS.
So, we still don’t have a reliable apparatus for actually determining who has this illness. There’s also no cure. … Or is there? [Hopeful music.] Some people believe that you can recover from ME/CFS. Are they right? That’s coming up in the next and final installment of May the 12th Be With You. [END OF SEGMENT 2/3]
Kaitlyn Blythe 00:00
So, to recap: there is currently no way of testing for ME/CFS, anywhere between 92,000 and 598,000 Australians are debilitated by it, and there’s no cure coming for them.
Sasha Nimmo 00:13
Statistically, there’s about a 5% chance of a full recovery and your chances are better if you are younger. About a third of patients get a little bit better or better to some degree. About a third of patients stay the same and about a third of patients get worse.
Kaitlyn Blythe 00:32
That’s Sasha Nimmo, a former science communicator with CSIRO who had to leave work when she became ill with ME/CFS four years ago.
Sasha Nimmo 00:40
I’m in the third who are getting worse.
Kaitlyn Blythe 00:43
We Skype each other from our living rooms, and while we’re talking a chocolate-coloured poodle named Muddy climbs into Sasha’s lap for a cuddle. I instantly fall in love. Sasha and I talk about the grief of not being able to go out walking with our dogs anymore. And two days later, she tweets me that Muddy has brought autumn inside to her with yellow leaves stuck in his hair. [Sound of a strong wind blowing through leaves.] When Sasha was diagnosed, her doctor told her she would definitely be better within 12 to 18 months. This is a common story among ME/CFS patients. She’s not sure if the doctor truly believed this, or if he just didn’t want to take away her hope for recovery. The placebo effect might work if the illness is psychosomatic, but with a disease like ME/CFS, this attitude can be downright harmful. Sasha explains why.
Sasha Nimmo 01:41
I didn’t take it seriously enough. I thought, took it as a given that I was going to get better. And if I had known that I wasn’t – about what my chances were – I would have rested more instead of pushing.
Kaitlyn Blythe 01:57
Pushing and crashing is a common issue with ME/CFS patients. It’s the harmful cycle of doing more than you’re able and then experiencing disproportionately worse symptoms for days, even months. It’s also known as booming and busting. This vicious cycle is something that self described CFS warrior Suze Mackenzie is trying to avoid.
Suze Mackenzie 02:18
It takes a lot of discipline to keep my mindset on the right path.
Kaitlyn Blythe 02:24
Suze Mackenzie is a former editor and journalist who had to give up her career when she became ill with ME/CFS. She left her thriving social life in Melbourne and returned to her parents’ farm to recover. That was two years ago.
Suze Mackenzie 02:38
So I spent about six months very sick and then got to the point where I could do a lot more. So then I went into what they call the push-and-crash cycle of you know, either through adrenaline, or caffeine or just sheer stubbornness. I would go and do things. And then, you know, it could just be going out for lunch with a friend and then I would spend a week crashing because of that. So then I wouldn’t do anything for a while and then I’d hate my life because I was so bored.
Kaitlyn Blythe 03:11
And so the cycle continues. Suze goes to a CFS clinic in Melbourne, where they teach her how to pace herself and stay inside her energy envelope. She also does a form of graded exercise therapy, which seems to be yielding results.
Suze Mackenzie 03:26
I can walk up to like 1400 metres was feeling fine and I do yoga every second day and this is all been–
Kaitlyn Blythe 03:32
Suze Mackenzie 03:33
Well this has been since November 2014.
Kaitlyn Blythe 03:37
Graded exercise therapy (shortened to GET) and cognitive behavioral therapy (CBT) are deeply controversial treatments for ME/CFS and spark serious feelings in the patient community. The reason being that having GET and CBT as the recommended treatments for ME/CFS appears to reinforce the stigma that it’s psychosocial and not a physical impairment. [Bright music.] Nathan Butler is an accredited exercise physiologist and the director of Active Health Clinic, which he established in 2008 to specifically treat patients with ME/CFS. He is the former coordinator of specialist inpatient and outpatient programs at the Austin Hospital in Melbourne, and while in the UK was involved with the controversial PACE trial.
Nathan Butler 04:29
I have to preface this that I’m not speaking on behalf of the authors of the Lancet. And my role within the trial was as one of the therapists in the graded exercise therapy arm.
The design of the trial and treatment – so there were four treatment arms: there was the graded exercise therapy, cognitive behavioral therapy, pacing, and standardized medical care. With the graded exercise arm, we were allowed to talk about the physical aspects and deconditioning and reconditioning, but we’re not allowed to talk about pacing or an energy envelope. And we couldn’t talk about emotions and the impact of the emotional state on the fatigue. Now from someone who believes that exercise in itself is not the answer, but it’s a combination of a lot of things that lead to management, that was quite challenging.
And so what it taught me was, you know, how graded exercise can be helpful and can help people, you know, physically, cognitively and emotionally. It’s not sort of what we promote, necessarily in the clinic. And pacing is first, followed by these other components, depending on the person’s needs.
Kaitlyn Blythe 05:33
GET and CBT were only recommended in the NICE guidelines for people with mild to moderate cases? So I mean, maybe it’s something that like, if you were going to recommend it for ALL cases of MECFS, you would see people with severe ME, who can’t get out of bed, being told “just exercise”, and – is that kind of where some of the misunder– maybe some of the interpretations that it’s dangerous are coming from?
Nathan Butler 05:59
I think anyone being told with ME/CFS just exercise is the wrong advice. But I think, I think first and foremost, we need to define what exercise is. And I think you know, we always get these views that exercise is going to the gym or pushing yourself or running. And it’s far from that. The way that we define exercise is any physical activity that elevates into your training zone. It’s above and beyond what you normally do. So any physical activity for someone who’s bed bound is literally sitting up. So I think it’s the awareness is only going to get better. We just need this initial research and we need to keep talking about it.
Kaitlyn Blythe 06:32
[Determined, upbeat music.] In the case of this illness, so called clicktivism could actually do a lot of good. Awareness raising is crucial to helping people with ME/CFS. Early intervention could mean a hugely better prognosis for patients. As it stands, you have to have symptoms for six months before you can even be diagnosed. Better awareness of ME/CFS as a “real” disease means patients will be quicker to see their GP, doctors will be quicker to reach a diagnosis, and patients can be learning to manage their illness before their muscles have deconditioned for months and bedrest. Not to mention the toll those first six months take on your mental health, when you have no idea what’s wrong with your body and no clue what to do about it.
That’s why I named the story May The 12th Be With You. Because May 12th – today – is the International Awareness Day for ME/CFS. And every GP who is better educated, or Centrelink employee who understands that this is a true disease, or senator like Scott Ludlam agitating for better funding, the better the outcome for hundreds of thousands of Australians. You can make this happen by listening to this story and then talking to everyone you meet about it. You’re our only hope. And to my fellow ME spoonies, my CFS warriors, my pillow fighters. This is our day. May the 12th be with you. [Serial-style piano cover of ‘Sleepless’ by Anna O.]