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

Head shot of Andrew looking into the cameraalmost without colour

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 I only regret that they focused more on outdated modes of practice, but we do need people to stand up and put forward the message of real science and show that these dinosaur practices of treatment (graded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.

Andrew leading an exercise class, standing lunges

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.

Andrew sitting on a low shelf resting out shopping, head in hand

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.

Andrew lying down, wearing eye mask on forehead, eyes closed

43 thoughts on “‘Insight’ on chronic fatigue syndrome: Andrew’s experience

  1. It is true Chronic Fatigue and Chronic Fatigue Syndrome are different conditions.
    I feel those practicioners who use GET/CBT as a treatment regime when it has caused damage, are using the lazy option.
    They cannot comprehend neuroscience which is paramount to the illness.

  2. So sorry the BPS crew weighed you down. Thankyou for your personal sacrifice in giving Insight a go. Sadly truth, like all the things you wanted to say, wasn’t given the mic.

  3. The agenda is not about getting to the truth of the situation, but about the medical system continuing to push their own so-called righteous view.
    The only reason I’ve achieved some quality of life is by managing my own health care and it’s been a long process.
    Thank you Andrew for all your efforts! Rest easy knowing you’ve done your best.

  4. Andrew, have you seen the Netflix series Afflicted? Althugh your programme sounds different in content, what they both have in common from the sounds of it are producers that are more keen in making a sensationalized program rather than caring for the participants. Well one for seein it thriugh to the derimant of your own health.
    will the show be availabale to the UK?

  5. Hundreds of Mylagic Encephalomyelitis sufferers in Australia are sure to be Thanking You for your precious energy supply being used to offer a glimpse for the ignorant about our disease. THANK YOU!!!

  6. Firstly well done to participants i have chronic fatigue as part of my lyme like illness contracted at work for natuonal parks mine triggered by numerous infections let go unchecked misdiagnosed until severe neurological muscoskeletal disease and brain damage
    Positive to borreliosis relapsing fever brucellosis babesia mycoplasma and bartonella
    Its very sad that infectious disease drs are not supportive of therapues utilised overseas that assist in treating fatigued states also chronic infections and immune supression
    Im thankful that i know whats making me sick and ive had opportunity to see specialists like dr elena frid in new york neurologist and haemotologist dr omar morales that have isolated part of the reason im so sick primarily triggered by infection xausing systemic infalmmatory state and immune supression
    Fighting 7 infections would tire anyone sadly its killing some australians
    Lets hope things start to improve soon
    As people like professor garth nicholson dr richard horowitz dr elena frid seem to be leading the way in these areas
    Ignoring the fact we have a lyme like illness in australia is adding to the burden morbidities associated with fatigue states

  7. Andrew, I just watched the show and you were amazing. Thank you so much for all you have done for the mecfs community. Honestly, I can’t thank you enough. I can’t believe that once again they put elite athletes on the show! Why do they not keep it to everyday people, with everyday resources, navigating the everyday (very mediocre) medical system. Hold your head up high Andrew. In my eyes you’re a hero!

  8. Andrew, thank you for your supreme efforts. You did all you could and I as a CFS sufferer thought there couldn’t have been a better advocate.

  9. Andrew, thank you for your honest words and presentation. I have experienced that exercise clinic, and was quick to follow my gut feeling on the lack of sound scientific reasoning behind their “pitch” and after 3-4 visits stopped attending.

    If he and his team keep approaching you take out an AVO.

    I would think the show would have been greatly improved by more questioning of both Butler and Lloyd, and their conflict of interests, in particular Lloyd’s.

    Thank you for the cost you paid to be a voice for us all.

  10. To Andrew, thank you so much for trying to get your point across for those of us who have severe cases. It’s a real shame they didn’t have more long-term sufferers there to share their stories , and pity you didn’t get a chance to get your point across properly.

    I was diagnosed 8 years ago with ME/CFS, crashed 5 years ago and have been mostly bed-ridden ever since. Mind you, the diagnosis only came after years of being told ‘It’s just growing pains’, ‘she’s just needs to get motivated’, ‘it’s puberty’, ‘it’s just allergies’, etc. I know now it’s not just ‘in my head’, it IS an actual physical disease.

    Unfortunately NDIS has rejected my application due to the fact that I haven’t attempted GET or CBT, even though it is now NOT recommended for severe cases like myself.

    In fact, the original study done in the UK that approved CBT and GET as therapies has now been discredited. Despite it no longer being recognized as a proper treatment for people with our disease, it is still acknowledged by Australia’s medical guideline’s. So I have to ask: “Why?”

  11. underdiagnosed Ehlers Danlos Syndrome with likely also Alpha Gal Meat Allergy involved…CBT/GET is total madness only twisted People would push these seriously ill Patients

    they are physically severely ill & need 2 epi-pens carried at all times…The CBT/GET community are Paid for Insurance Company fraud scams Paid by them as well…Criminal charges will soon happen

    including Private Commercial Liens under Uniform Commercial Code Laws which is an Arrest Warrant in Commerce. One very soon will be filed in the United Kingdom against the British

    Government & the NHS including a few Doctors as well

    1. Hi thanks for your support! Just to clear things up I don’t have EDS, I’ve been diagnosed with POTS, Fibromyalgia and ME though. Also I’ve been vegetarian for over 16 years so no meat allergies in play either 😝😅

  12. Amdrew, thanks for the link. It worked and I watched immediately after I read your message.
    I could see how hard it was for you as you became obviously very tired towards the end.
    I would have imagined facing the exercise therapist that you saw at the clinic was quite challenging. I felt he was trying to dig himself out of a huge whole. Not sure if that was correct, but that’s what I felt.
    And the Dr Andrew who was talking about the guidelines and saying rather than focusing on changing them, it would be better to educate health professionals etc. Seemed like an oxygen moron to me because all you’d be feeding them with were treatments that can severely damage a patient for good. Made no sense at all.
    I thought the GP Mark? who was referred to a lot was excellent. He obviously had a great passion for the ME community and you could see his frustrations. And the father of the two,siblings whom both had ME/CFS was incredibly knowledgable too.
    You did a brave thing on that programme Andrew. I applaud you as it would have had such an impact on your health afterwards as you’ve hinted at in your post.
    If it’s ok with you, I’m going to share your blog post along with the attachment for the programme.
    Our illness is such a conundrum isn’t it! To have two individuals that seemingly get most of their health back where as others like yourself and most actually on the programme haven’t regained hardly anything at all compared to their pre illness bodies.
    You did an incredible job so well done! And a massive thank you for doing it and representing the ME community.
    I’m following your blog now so I can keep in touch.
    I hope you’re fully recovered now from that ordeal and that you feel,proud of yourself for doing it, because you should!!!
    Much love to you Andrew and take care.
    Regards,
    Fiona.
    X

      1. Thx Sasha! Please reiterateto him for me that he really did a good thing by going on that programme. And him breaking down conveyed to those watching how all the ME community feel. #onebraveman

  13. I just wanted to say thank you Andrew. Thank you for representing us. Thank you for your bravery. Thank you for your sacrifice. Thank you for your honesty and openness. My heart goes out to you. Thank you.

  14. Thanks so much for your brave work Andrew. Sorry to hear you had such a difficult time, thanks for taking the time to write about it.

  15. Thank you for your efforts on the show, and this follow-up piece.

    Very sorry about the appalling behaviour of Butler you had to put up with. Completely inexcusable.

    But take heart, Butler has firmly placed himself on the losing side, and it will not be long before he and his kind will be fully revealed and stopped.

    Just today Cochrane has temporarily withdrawn their review on GET to do a re-assessment. Things are moving in our favour.

    https://www.s4me.info/threads/cochrane-me-cfs-get-review-temporarily-withdrawn.6225/

  16. Andrew thank you for trying so hard. I know where you are coming from. We are a family of 3 generations of ME, so lots of experience! My mother passed away last year, and her severe bed ridden state was due to being pushed by ignorant doctors, so my message to you is to listen to your body and ignore the so called specialists. I have moderate ME but getting worse as I age….like you I am a PT! Used to ski competitively as a teenager, am a Scuba Instructor, and generally love activity. I have also been told I am just de conditioned….my son is 26, spent a number of years using a wheel chair, made an 80% recovery over about 9 years, however is he is now suffering endocrine complications which have rendered him too ill to work or study.
    Life is a constant battle to get doctors to actually listen.
    Hopefully there seems to be some good research coming out of the USA, and also Australia, and maybe it will start to make a difference. I wish you well.

  17. Your presence on that panel was absolutely critical for the show to have any claim to representativess. Thank you for going on and ensuring that the take aways for Australian viewers reflect the vast majority of sufferers’ lived experience. Also it was very odd that the science clearly contradicted the guidelines yet the show made nothing of this. Thanks to people like yourself, and the father on the show, this point came across. Also it was important that the GP who highlighted that the experience of two of the panellists was highly unrepresentative, I think the show will improve public understanding of the illness. Due in no small part to your sacrifice to health in appearing.

    1. Andrew,
      Please listen to me. I will give you one name to follow up and one only.
      This person will 100% guarentee heal you of this.
      I want you to start looking at his u tube videos, website, insta , FB, his four healing books..all of it!! His name is Anthony Williams and he is known as the ‘ Medical Medium’ and has cured all chronic and auto-immune diseases including Chronic fatigue by the thousands. His testimonials are mind blowing!! Please, please follow this through and let me know how you go or need more information.
      With all my support,
      Sylvia

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