To be honest, I’m partly writing this because I’m planning on hooking folk up with this blog link when they take a breath, eyes shining, about to inform me – poor me, the woman who obviously doesn’t know how to cure thyself – their one-and-only, tried-and-true (by their cousin’s dog’s godfather) 

CURE FOR MY CFS.

“Oh, have you tried *insert alternative therapy for CFS here*?!”

They exclaim.

As if standing in the co-working space/dance studio/parent gaggle waiting for kids to file out of class is going to be the spot my entire life changes.

And I mean, you have to have a bit of gratitude, for those folk who think it’s simply unawareness or not enough research or sheer unluck I haven’t yet stumbled upon their ‘cure’. 

Sure, you never know, maybe they have it. Maybe the 28 years so far I’ve tried ALL THE THINGS and read every single book and article and spoken to most doctors in Perth, and Australia, and some even International dudes (yeah, they’re mostly dudes) just hasn’t landed me in the right spot to hear about the one thing that’s going to fix me.

Or perhaps there isn’t one thing that’s going to fix me.

In the case there are multiple things, here’s an extensive list of weird, wonderful, downright wacky, and also mainstream medical things I’ve tried for CFS, including some alternative therapies I think helped a bit and some that only have value for you getting a giggle out of the very thought, my fine reader.

Note: I first became unwell with Glandular Fever at 15. I was dancing full time for the Wildcats and going to school full time, too. 5 days a week at school, 6 – 7 days a week at dance. You can probably guess there’ll be a few things I miss, because I’ve never actually sat down to write out this entire list before, and I’m not – at the time of writing this – 44 years old. But I’ll try to put them in order. 

Other big note: I’m not suggesting if you have CFS or ME or Lyme or any of the other hard-to-diagnose and even harder-to-get-someone-to-take-you-seriously-enough-to-treat-you illnesses you give any of these a crack. This isn’t medical advice. It’s just lived experience storytelling. OK? OK. Let’s go.

alternative therapies for cfs

a: Not an alternative therapy – total ignorance 

When I first got sick, I thought I had the ‘kissing disease’, as Glandular Fever is often called. I know where I got it, I’d only kissed the one boy for my entire 15th year of life, my very first official boyf, let’s call him Saul (which isn’t his name, but pretty darn close). Saul was a private schooled, cricket playing, sport nut who rather liked having a girlfriend who was a size 8 and had coveted pom poms for the state basketball team. 

He did not so much like having a girlfriend who suddenly couldn’t get out of bed, had to crawl to the shower, cried quite a bit, and put on 40 kilos in a year. Also, lost my spot on the cheer squad, started failing Year 11, and did not quite cope with being left behind by most of my high-energy friendship group. 

Funny that.

My mother still beats herself up now, but in all truth – we had no idea what we were dealing with. He got better from Glandular Fever within a couple of weeks. I’m still recovering nearly 30 years later. He married the girl he met at the GGS social the night he broke up with me for being altogether suddenly hopeless and I’ve taken the rest of my life trying to build a bridge between BCFS (Before CFS) to whatever my life is now. 

And so, because I was 15 going on 16, I just tried to push through. 

I dragged myself to school, dance class, life. I dragged and dragged and then couldn’t drag for a moment more and then KABOOM – complete life blow out. Boys really do have germs. 

1. Alternative therapy 1 – Homeopathics

After a good year (that I barely remember) of my mother begging and pleading various medicos, and hitting up libraries (erm, because we didn’t have internet then) to try to figure out what the heck was going on with her previously well daughter, I was toddled off to a homeopathic doctor.

Now, I don’t mind the old “homeopathetics”, as my very not-woo, rather blunt husband calls them. I used them with my kids growing up. I don’t think they’re damaging, at the very least. 

But this guy (name unremembered) gave me enough small white pills to sink a ship, or bring back the Glandular Fever, which was the main point of the exercise.

I don’t remember much happening and I didn’t get better, which probably makes this:

ALTERNATIVE THERAPIES FOR CFS FAIL NO. 1

2. Alternative therapy 2 – Psychiatry

It will come as zero surprise to anyone who has found themselves the harbour of an unknown illness the go-to process for anyone involved seems to be,

“it’s all in her head”.

Besides the fact this is brilliantly damaging and totally irresponsible, tell me ONE 15 year old living a life she bloody loves who’d rather give it all up to fail high school, lose everyone in her social circle, and have her entire life trajectory hit such a massive speed hump, she flies through the air and lands smashing all the bones in her body on the asphalt. 

I had been dancing since I was 2. I’d just discovered I could sing. I had a boyfriend I quite liked, friends I adored, and a professional dancing career on the up. 

I. Did not. Decide. To do this. To. Myself.

Nevertheless, someone got in my Ma’s ear and I was shipped off to the Psych.

Now, I have nothing against our lovely head doctors. In fact, I think everyone should be in therapy – honestly. 

What I don’t appreciate is walking into any doctor’s office with an illness that shows up in blood tests and being offered anti-depressants as the first step of treatment. I think anti-depressants are fabulous, if you need or want to take them and you’ve been prescribed them by someone who has taken the time to get to know your needs. However, I knew I was sad because I was sick, not the other way around. 

Also, let me just give you this bit of advice – if your loved one suddenly can’t get out of bed and is crying in pain all the hours of the day she manages to be awake, don’t take her to a Psych that spends an hour a week telling her she’s imagining the pain, nausea, vomiting, and associated suicidal thoughts. News flash: doesn’t help. Which makes this: 

ALTERNATIVE THERAPIES FOR CFS FAIL NO. 2

3. Alternative therapy list – a CFS specialist

I don’t know what kind of bribe she had to offer up, but at 17 my Ma got me an appointment with the one-and-only legend that is Dr Z Pervan. If you have CFS or ME, you’ve probably heard of him. This is Pervan Snr, not the two Docs I believe are his nephews who now work in the same space. 

He didn’t have availability because, at the time, he was really the only medical doctor in our state who had a special interest in CFS and who was taking patients to treat them as such. He was the Holy Grail of treatment at the time and, bless his heart for forever, he turned my life around.

This was my regime under Dr Pervan:

  • Around 45 supplements a day including; Vitamin C, carnitine, magnesium, B12, DHEA, lysine, fish oil, Vitamin D, valerian, folic acid, iron (now I have injections – SO GOOD!), and a terrible tasting concoction of something that started with L (or G? Or both?), and was meant to help do the job my stomach didn’t do for me anymore – which was suck the nutrients out of food
  • Constant blood tests and juggling of those supplements to suit
  • NO stress – so no school, no social life, no love interests, no stairs, no walking, no exercise, no fun. I was to look at beautiful things, stay away from all chemicals, change my deodorant and check for mould in the house
  • Bananas and milk for crippling insomnia 
  • Rest, endless rest (this I was thankful for, all my body wanted to do was sleep) 

Finally given a diagnosis after years of treatment with Dr Pervan, he was also the catalyst for government recognition of my severity, which was classed as moderately severe. I was his patient from 17 – 28, during that time I went to University, got married, and had two children – all of which he told me not to do and graciously juggled my treatment when I went and did them anyway. He laughed at me, shook his head, and continued to be my doctor and advocate until he retired from practice to go into research when his wife died, I believe of something extremely similar to (if not) CFS. 

And while no one thing “old Dr Pervan” recommended worked as a standalone ‘cure’, his consistency in trying to help me navigate what my life now looked like was certainly a treatment. Heck, the most important thing he probably did for me was label my illness and make me feel wholely justified in feeling the way I felt. So I guess that means:

ALTERNATIVE THERAPIES FOR CFS SUCCESS-OF-SORTS 

AKA: find a Doctor who doesn’t gaslight your very real physical symptoms. 

And that brings us to the end of my childhood battle with CFS and onto when I started managing it as an adult. 

4. Alternative therapies bundled for 4

Vitamin C injections – large doses. Nope.

Freezing cold baths (like, think chunks of ice big enough to take down the Titanic). Nope.

Reiki, massage, bodywork, Qigong, hypnotherapy. All very, very nice. Didn’t cure me.

It’s important to note for around 10 years after my treatment with Dr Pervan ended, I self-managed my CFS with the knowledge I knew and could gather. I tested starting and stopping various remedies, and ended up ditching the supplements altogether when stopping taking them didn’t make much difference, except to my bank balance. I got angry about it, and went back to alt. therapy no. 1: pushing through but with some amendments to the pushing. Because I could only push so far. 

ALTERNATIVE THERAPIES FOR CFS FAIL NO. 4 – THE BUNDLE

5. Alternative therapy 5 – Pregnancy

So, even after reading Osler’s Web and getting my hands on the internet, I’d never absorbed the information that pregnancy can feel like a fix, or 40 weeks or so period of relief, for CFS symptoms.

So, imagine my surprise when finding out I was pregnant coincided with deciding I was magically well. 

I wasn’t magically well, I was just up the duffery with a tiny, sweet babe who slipped the contraception net. I call him my 0.02% baby (but it’s safe to say my CFS symptoms – especially the vomiting one – would have made a bit of a difference to the efficacy of the contraceptive pill, I guess?!)

Had a pretty good 9 months. Had a fabulous kid. Went back for another 2 years later and found myself pregnant with a girl and a nice dose of hyperemesis gravidarum which lasted from the moment I got pregnant until the day she was born. Lost 17 kilos, everyone told me how amazing I looked, even with the broken blood vessels around my eyes and an incapacity to eat anything but white rice and watermelon for the entire pregnancy – which just goes to show how stupid society is about weight loss. Had another beautiful baby who more than made up for the pregnancy disaster and continues to do so but short answer: pregnancy is sometimes a pause-all for CFS symptoms, if you believe the anecdotes floating around, but in my case was a 50/50 shot. Couldn’t stay pregnant and shortly after baby 2 was born, I found myself divorced and holding the newborn – which put pregnancy on the Nope List for at least another 6 years of singledom. 

ALTERNATIVE THERAPIES FOR CFS FAIL NO. 5 

6. Alternative therapy 6 – Electrical current

This is not a joke. I heard about a friend of my Mum’s daughter (yeah, I know, but you do get a bit desperate) who was diagnosed with CFS, accidentally zapped herself on the horse fence, and magically got better.

Worth a shot, I reckoned.

I bundled up my two babies, hopped in the car with my boyf at the time, and trundled down to his parent’s property in Donnybrook.

Apart from apples, they have electrical fences there. And their neighbours had cattle, so I set it all up.

Did you know some electrical cattle fences send out increasingly volts of shock the longer you hang onto the wire? 

I found out.

It was… shocking. But didn’t do much. 

ALTERNATIVE THERAPIES FOR CFS FAIL NO. 6

7. Alternative therapy 7 – Urine therapy

Yeah, you read that right.

And so I’m giving you a bit of a chance to back out now – you don’t have to pass Go, or collect $200. You can go peruse Instagram or something.

Still here?

In my defence, I was working at the local Steiner (Waldorf) school at the time and my parental friendship group was, well, we can just say – hip with the woo. And one of my good friends, who eventually ended up being one of my bridesmaids, so I obviously wasn’t so angry with her about this, loaned me a book about Urine therapy.

I mentioned we were all at the Steiner school right? That meant no carbonated drinks, all organic and biodynamic food, and you can bleeding bet I drank 35 flipping gallons of water a day when I decided I’d do this for real. 

There are two ways to treat yourself with Urine therapy. Both include Urine. You can make it up as a homeopathic remedy in booze, or you can drink it straight. You know I was in for a penny, in for a pound, and I tried both. If I’m going to be totally open about this, I should also tell you I tried it as a facial therapy to boot. Heck, I was already all up in there. I figured I may as well. 

This section may have turned your stomach, and, in all honesty, I’ve probably only told 5 people throughout my entire life I tried this – until I wrote it in this blog – so you know I’m well aware most people will think I do need to go back to the original Psych. 

But I think it highlights just how totally desperate people trying to manage their own symptoms from a disease some of the people in their lives believe isn’t really a thing can become. 

(Again, in my defence, one of the mothers at the school was undergoing Faecal Transplant Therapy for a similar immune disease, but I drew the line at that.) 

ALTERNATIVE THERAPIES FOR CFS FAIL NO. 7 – also, not recommended

8. Alternative therapy 8 – Gluten-free diet

Tasted like bricks. Tried it for a year. Nothin’. 

Also see:

9. Alternative therapy 9 – Counselling

Not exactly like the aforementioned Psych, this was Anthroposophical Counselling and I originally took my wee little boy because (again, the Steiner school) suggested it (for what we’re now pretty sure is plain-old undiagnosed ADHD). I thought I was dropping him off, turned out I got all the counselling I didn’t want.

Including past life regression. Nope. 

And some boundary setting. Oooh! Hit a goodun. That actually did help a bit.

I’m not sure No 1 Son remembers much about his Anthroposophical Counselling days, but the whole Steiner philosophy rubbed off in different ways. He won’t take a flipping Panadol, even when he has man flu, and we can never have pizza night without loud whinging about lack of vegetables. He has zero midline problems, is incredibly spatially aware, and physically strong and fit, and – thankfully – managed to pass Year 12 Maths and English with some mainstream help. He is also particularly compassionate, extraordinarily empathetic, cannot stand injustice, and remembers building villages and saving old bones for currency with extreme clarity – although perhaps that was always going to be his personality regardless.   

ALTERNATIVE THERAPIES FOR CFS FAIL NO. 8 & 9

See also: some alternative therapists will suggest you actually wished for a disease. Wanted it. Manifested it. If this happens to you, walk out of there immediately. 

10. Alternative therapy 10++ – Chemical-free, organic, biodynamic, sugar free and (mostly) dairy free, plus back to 3487234 supplements a day

Supplements: see above.

Also, cheated a bit, because also did this with the food to prep myself for getting pregnant at 35. I was old, new husband was even older, (he got it harder than me – no beer, even) but it worked. Perfectly beautiful baby boy we got pregnant with pretty much after two shots. New husband was quite disappointed after being warned it may take us years to fall pregnant given our age and my health. 

I did feel very… clean. However, did not help with pain, nausea, vomiting, or any other related CFS symptom. 

After baby number 3, I kind of went back to pushing through and trundling along. I’ve never been able to actively be part of the support groups that popped up for CFS patients online, I just ended up feeling more desperate than I started. So, I kind of ignored it all for a while. Threw up every morning. Cried if I had to drive more than one place in a day. Built a 6 figure business – as you do.

Then, in 2019, I made a deal with my soul I’d shift focus more to myself.  

My business, Crisp Copy, was going amazingly, even though I only had 20 hours a week to dedicate to it, my children were growing up wild and strong and smart, my marriage was level and easy, and this whole health thing was the one, big thing I just couldn’t get on top of. 

It felt like the only place in my life I was failing. 

You know, besides cooking.

So, I did some interneting. And found a new CFS specialist, over the other side of Australia. Which leads me to:

11. Alternative therapy 11 – Weight loss

I feel like this is a blog in itself. Because to try to unpack the various damaging messages ‘overweight’ people hear – DAILY – about how their every. single. problem would vanish if they were just a size 10 is almost impossible.

I had my stomach banded. 

I lost 30 kilos.

I had a baby. 

I put some of it back on.

Great – right? Didn’t touch my CFS and, in fact, when the balance wasn’t right I not only lost some hair and my teeth went wobbly, I became a stone-cold, hard-hearted, cranky-butt biatch. 

I threw up my own spit. I didn’t eat a single thing nor keep down a sip of champagne on my own wedding day. I had to have my gall bladder removed. Everyone told me I looked amazing.

*sigh*

12. Alternative therapy 12 – Naltrexone

Naltrexone certainly makes the ‘alternative’ list, because it’s not really meant for CFS patients. It’s prescribed “off label”, which is Doctor for “freaking expensive” as it’s made for folk recovering from Heroin and does not sit anywhere near the PBS list. I believe you take it in 50mg doses when you’re trying to get off the bad stuff, and for CFS it’s prescribed in doses from 1.5mg to 5mg.

I found a Doctor who was intensely interested in my upwards trajectory of quality of life while maintaining the blood test results of a zombie and who was hip with the off label Naltrexone-ing and, boom, I was on. 

For 2 weeks I thought I might die, it was so horrendous. But – again – in for a penny and all that.

And then, suddenly. I didn’t throw up one morning. And then not the next. I got out of bed and the world didn’t spin. I still had waves of nausea and lightheadedness, but they were waves, not like drowning in the ocean. My skin didn’t scream in pain when I put a t-shirt on, I still had pain, and I still have Allodynia to this day, but I didn’t want someone to reach into my body, rip all my bones out, and give me a green dream needle just to get away from the agony. 

6 months later, we upped my dose to 3mg. 

Same acclimatising period, then even more relief.

The RA I’d been diagnosed with sometime in the last 2 years eased. My elbow didn’t holler at me all day. My wrists worked without me really thinking about them.

This wasn’t the cure-all I’d spent over 20 years dreaming of. But it was something. And it was the biggest something I’d experienced in my half-life quest to fix myself. 

And to think I’d nearly given up. 

But it wasn’t really the Naltrexone that fixed me. It was the realisation I didn’t need to be fixed. CFS is life changing, and, for some people, totally debilitating. But mine was manageable. Moderately severe. But doable.

I think I realised I was never going to get my cure. Slowly, surely, that dawned on me. 

There is no magic cure, yet.

Recently, a copywriter friend did my Astrological chart as part of a Masterclass she’s teaching to my signature course participants. In my stars, there lives a lot of lessons, and one of them is chronic illness. I wasn’t surprised to hear her read my chart that way, and I realised at some point in the last three decades I’d stopped thinking of myself as a project to clean up, and started thinking of myself as a project to love. She inferred maybe it was my destiny. I don’t really mind either way now, because even if it wasn’t meant to be all along, maybe this is my destiny now. 

To be one voice for the hidden. One lived experience for someone else to read, dissect, find a bit of hope or humour in. 

Maybe my life doesn’t turn around with a cure. Maybe I’m already on the path I’m going to stay on. 

Maybe I just live a life worth living, to do things I’m told not to do even when constantly trying the things that are suggested.

I’ve lived with CFS for longer than I’ve lived with anything else

longer than my marriage, longer than I’ve parented my children, longer than I’ve been an adult. And sometime in those years and years of struggling, striving, pushing through, ignoring, starting again, failing, wailing, tearing my hair out, sobbing, dancing it out, succeeding in spite of – I decided I’d keep being the try-hard I am, deep down inside. 

So, maybe if I bump into you in the parent gaggle at school pick up and you suggest naked horse riding, or bathing in synthetic blood, or dried herbs, or sniffing smelly oil from my palms, or prayer, or dancing skyclad under the moon circling the fire widdershins (nah, don’t suggest that, I’ve tried it and while it’s incredibly fun, you also run the risk of alarming your neighbours), yeah, OK, maybe I’ll try your suggestion too.

Maybe it is my destiny to be a total CFS alternative therapy try-hard for the remainder of my (hopefully long, hopefully relatively pain and nausea and associated illness free) life. 

But I’m not trying the pee thing again. 

 

None of the information in this piece is meant to stand in for your own research, your medical team’s suggestions, or professional advice. Please always speak to a medical professional you trust before even considering trying anything alternative, or anything prescribed. 

 

 

 

I’m Jay Crisp Crow

and I started a life-revolution with a need to write things, $0 in the bank, a borrowed laptop, and a disability – all driven by a desire for the amplification of women’s voices

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