‘Insight’ on chronic fatigue syndrome: Andrew’s experience

Andrew Bretherton was working as a personal trainer, kung fu and basketball coach and finishing a psychology and sports science degree when he became ill. He is now mostly housebound due to ME.

He tried graded exercise therapy at a Melbourne clinic where he was blamed for his illness, told he was averse to exercise and had the wrong type of personality.

Andrew wanted to go on SBS’ Insight to show what it’s like for the average patient.

“I can only imagine how bad it would be for someone who didn’t have a sports science or psychology background going through all this and then believing ‘oh okay, maybe it is in my head’ or what they were doing is acceptable practice when it’s not.”

While some participants on the show – Luke, Ketra and Andrew – were assessed using the International Consensus Criteria for ME, Andrew pointed out misdiagnosis is an issue and overtraining syndrome in athletes is referred to as ‘chronic fatigue’ which leads to confusion.

Three hours of filming took a toll on Andrew and it didn’t help that the Melbourne graded exercise and cognitive behavioural therapy clinic staff continued to contact him after the program, even joining closed patient Facebook groups.

Andrew would do it again, if he had the chance, and doesn’t regret going on Insight.

“It’s not often you get a chance to confront your abuser, so it was therapeutic for me in that sense. I only regret that they focused more on outdated modes of practice, but we do need people to stand up and put forward the message of real science and show that these dinosaur practices of treatment (graded exercise therapy and cognitive behavioural therapy) are harmful to patients.”

How would you describe your illness?
It is like a living death. You’re a prisoner of your own home, mind and body. I’m mostly housebound these days. I can no longer do the activities I enjoyed doing or even HOLD ON to a job.

I became sick around the age of 26 but no one knew what was happening. It wasn’t until about two years ago that I got an official diagnosis after having been sent to hospital. My left side had become numb and doctors couldn’t work out why.

I was then sent to a top ‘fatigue clinic’ in Melbourne and they had told me it was pretty much all in my head and linked to some previous ‘trauma’ and that I had and needed to do graded exercise therapy and cognitive behaviour therapy to fix it.  I found this weird as I was still very active, I was working as a basketball coach and finishing my psychology and sport science degree at the time, and I had been treated by a psychologist for some time on another issue so I thought in essence “I’m already doing that”. They also gave me high doses of Ritalin and dexamphetamine ‘for energy’ and although it did help a little bit for the brain fog, it left my body feeling more wrecked afterwards and my sleep specialists at the time were very surprised that this was being prescribed to me as it went against their recommended treatment for delayed sleep phase.

I was referred to Active Health Clinic who were in charge of my graded exercise therapy and I found the experience there quite unsettling. I had to have one-on-one talk sessions with an exercise physiologist just about the ‘challenges’ of my condition. As I was doing the sport science in psychology degree, I found this concerning because as an exercise physiologist isn’t trained in mental health practices and cannot make diagnoses or recommendations yet this is what they were doing at the clinic. They gave me a diagnosis of central sensitisation (conversion disorder) said I was averse to exercise and had the wrong type of personality so apparently I had a ‘type A personality’ which I had learnt in my course isn’t a good indication of measuring someone’s personality.

They also gave me some psychological tests to do. Rather than filling the forms out on my own and answering it on my own, they answered the questions with me and so I would tell them my answer beforehand and then I was asked ‘Do you really want to put that down as your answer? Or do you want to this way because this happened or this happened’ which I also found very suspect.

Before entering the Active Health Clinic program I was still practising kung fu, coaching basketball, playing basketball, working and studying full-time as well as taking regular evening walks and other exercises. I was told I needed to pace myself and try to do some more exercises. When I made the suggestion that maybe I should be doing less I was told that this would be a setback and make me more deconditioned.

I started to become more sick doing these treatments and it was almost like every week I had to give up something. I had a big background in fitness, I’ve got certificate three and four in fitness diploma in sport recreation fitness and I was doing the sports scienceand psychology degree so I knew how to follow fitness programs. When you try to tell them it’s not working you’re blamed for it or you’re told that you have an aversion to something, which really kind of pissed me off because sport was such a huge part of my identity and when I had to give up coaching that was really depressing for me because I felt I had let the those kids down. I then had to give up study because I couldn’t handle the study load anymore and I found even filling the weekly forms for the clinic had become harder for me to do.

I started missing appointments at the clinic to because I was either too exhausted to get there or because of brain fog I’d forgotten appointment times these too were seen as my fault “as I didn’t want to get better”. Even talking about it now just really upsets me.

After that experience I went to CFS Discovery in Donvale and I found them to be very supportive and I was actually diagnosed under proper consensus criteria and had proper medical tests done to confirm what was happening. That was a game changer for me as rather than being blamed for why I was sick, CFS Discovery seemed to have answers in and they didn’t BS me either – unlike the previous fatigue clinic I went to who said I would be cured within a year or two. CFS Discovery told me the true nature of the illness: that while it’ssur rare, some patients ‘recover’, not all patients will recover full functionality and that is no cure yet for the illness all they could do is help manage the symptomology.

Are you a typical patient?
I guess so, yes, but when you’re talking about ME what is a typical patient? It seems to be very broad question. Not all patients have been assessed under the consensus criteria so it’s hard to know which patient has ME or if perhaps they might have another illness.

I know of some patients who were told that they had ‘chronic fatigue’ only to find out that they had Crohn’s disease instead or something else. That’s part of the problem — we need to educate the medical community so that we don’t have this cross contamination of other illnesses in our disease.

What motivated you to go on Insight?
I want to be able to do something before I’m too unwell to do anything. Having done the kung fu I’ve always been a fighter so I’ve always stood up to bullies. I wanted to get out our experience of what it’s like for the for the average patient going through this, I can only imagine how bad it would be for someone who didn’t have like the sports science or psych background going through all this and then believing ‘oh okay maybe it is in my head’ or what they were doing is acceptable practice when it’s not.

How did you prepare to go on the program?
Physically: I asked the program if I could come up earlier so that would give me enough time to rest and not be pemmed (PEM or post exertional malaise) out during the program and luckily my family live close to Sydney (I live in Melbourne) so I was able to spend quite a lot of time recovering after the program at my family’s house.

Intellectually: I started preparing and a few weeks in advance I asked some ME community groups what they would like addressed or what they would think I’d be challenged on. I wrote notes of scientific papers and reached out to some high profile ME/CFS advocates for advice. Emerge Australia, Millions Missing, MEAction and CFS Brisbane gave me some notes on media training so that was quite helpful as well. I just hope I haven’t let them down…depends on how it gets edited I guess. I used to do stand up comedy a while ago so I used techniques from that to help me memorise some information on what I thought I would be questioned on.

What did you think about the other people who were invited on Insight?
Hmm, look it’s not my place to say or challenge anyone about their experience of the illness. I would say they spent a lot more time on Alistair’s and Adele’s experience in which they say that they’ve been cured/recovered from ME which is quite a bold statement in itself. But this is not representative of our patient community.

Most of us are unable to work or hold onto the lives that we used to have and for me if I could kept playing basketball, kung fu, study and have a job I would do it in a heartbeat.

Alistair said he could still play AFL at an elite level and Adele could still play netball at a professional level (with pacing) so it just doesn’t seem plausible or even possible in my experience for an ME patient to do that as activity, especially high level physical activity leads to a worsening of symptoms and a decline in physical capacity.

Then there is the issue of misdiagnosis. It would be interesting to see if they had met the criteria for me either under their CCC or ICC. I know from the participants on the show Luke, Ketra and myself do and were assessed this way, but I’m unsure if the others were.

Overtraining syndrome in athletes is quite common and can share some very similar symptomology/prognosis with ME and is often just referred to as ‘chronic fatigue’ so perhaps there is some confusion there it’s important to remember chronic fatigue is a just symptom of ME (and many other illnesses) and is not ME itself.

What happened when the cameras weren’t rolling?
Hmm, the actions of the owner of the exercise clinic before and after the show were quite concerning. Before recording I was having a nice discussion with Professor Don Staines, Professor Sonya Marshall-Gradisnik and Jen (parent of a son with ME). The owner of the exercise clinic joined the group and we all went quiet. He introduced himself to the others and I replied “we’ve met” and that I did not want to shake his hand. He asked how I was going and that we needed to have a ‘talk’ before going on the show. I told him this was the first time he has asked about my care in over 12 months since being at his clinic (who have a weird policy of not checking up on patients “as it our responsibility to want to get better” — imagine saying that to a cancer patient) and that I had nothing to discuss with him.

After the show I was followed by him to ‘have a talk’ and I had made it very clear that I did not want to talk to him or have anything to do with him but he kept pressing, following and harassing me to talk to him until I agreed. He kept saying “why?”. Eventually I replied, “Let me put in words you’d understand: you’re now presenting as a DIMS” (“danger in me” from his dumb program). I was already so tired from the program so I just wanted him to go away (he was like a child that keeps saying mum repeatedly) so I asked him what he wanted to talk about. He said, “you know Andrew I have a family and a career and employees to support and what you said in there could jeopardise that”. I replied “that’s great mate, I have none of things because of you, I lost my job, I had to give up uni, and you get to still have to career I was working towards, I’ve lost partners to this illness and I’m not even sure I’d be able to help raise kids anymore”.

He then said that I was at fault for not going to the clinic anymore.

He asked how I would treat the illness then I pointed to Professor Don Staines, Professor Sonya Marshall-Gradisnik and Dr Chris Armstrong. I said “do some proper exercise science, you could offer stuff for ME patients but there’s no money in it for you as it’s mostly just functional testing and it would mean you’d have a record of deterioration (two day CPET, vo2 max, muscle tests, etc)”. He said it was unfounded, their research was proven or something it was at this point Chris stepped in, stood up for me and mentioned some research stuff.

Two days later a clinic employee joined ME/CFS Australia (facebook group) and criticised me and some of her former patients on the group page. Then I got an email from him. I told SBS what happened and to tell him to stay away.

Did you get a chance to say everything you wanted to say?
Short answer is no. The show spent most of the time on Alister and Adele (probably because of their high sporting profiles) and Nathan Butler and Professor Andrew Lloyd which was annoying. I felt they should have spent more time on Professor Don Staines, Professor Sonya Marshall-Gradisnik, Dr Chris Armstrong and Professor Paul Fisher or at least let them reply more or refute the claims being made.

I tried my best to interject but was told “to let others speak”.

I mostly challenged Butler but would have loved to have been able to challenge Lloyd. I, and lots of other patients and groups, provided information on the illness to SBS to help challenge some of the claims being made but it didn’t really happen.

Originally we were told that it would be a panel of researchers rather than patients on the day but this got switched around. It was almost three hours of filming so towards the end I was getting pretty pemmed out and had trouble getting my point across.

Did going on the program impact your health?
Yes, I spent about a week and laying down on my mum’s couch or her guest room on the bed and recovering after the show.

The day after the show I was too sore and exhausted to even pack my luggage to go to Newcastle so luckily a fellow ME patient in Sydney had heard I was in a bad way in and she came and helped me get ready and dressed and by the time I got back to Melbourne I was pretty sore and ended up having to see a physio for the muscle pain.

Would you do it again?
Absolutely! I would do it again it’s not often you get a chance to confront your abuser, so it was therapeutic for me in that sense. I only regret that they focused more on outdated modes of practice, but we do need people to stand up and put forward the message of real science and show that these dinosaur practices of treatment (GET/CBT) are harmful to patients.

What would you have liked the program to achieve?
The program was a missed opportunity. We finally had both the biomedical and psychosomatic researchers in one place together to openly challenge each other or refute untruths but the biomedical team weren’t given that opportunity. I tried my best to refute the psychological and exercise stuff but wasn’t given much time and could hardly be considered an expert. Also they had the chance to address conflicts of interest held by both Butler (Butlers work on the PACE trial and its huge faults) and Lloyd (his position in government and advisory bodies, receiving grants etc).

After the show a lady from the audience came up to thank me and told me about her daughters experience she said the program would have been a joke if I had not gone on.

Will the show have an impact on people with ME and chronic fatigue syndrome?
It’s hard to say, it will depend on the editing. I think most patients will find parts of the show quite triggering as I did. I’m hoping what I did say would have had some effect and that I haven’t let the community down but it’s was almost three hours of filming the day after flying from interstate and I was pretty pemmed out towards the end so I couldn’t fight as much as I wanted to.

How are you feeling about watching it go to air?
Hmmm a bit anxious. I didn’t really feel it was a fair fight so I hope people don’t get the wrong impression that our illness is psychosomatic and can be cured with exercise.

SBS Insight program, ‘Chronic Fatigue Syndrome’ goes to air at 8.30pm on Tuesday 16 October.