Friday, 13 August 2021

Day of awareness for severe ME/CFS

It was severe ME/CFS day last week (the 8th of August), and this week the 40th birthday of a lovely friend who has had severe ME/CFS for over a decade. We met at uni in our early 20s, in the in the mid 2000s, and bonded over our love of native plants, went for many plant-appreciation bushwalks, and also worked together on an ambitious project to build a community sustainability demonstration centre, with strawbale building, community garden, food co-op and pizza oven. Nowadays she is confined to a darkened room and completely dependent on her partner and ageing mother to take care of her.

My friend and I building the sustainability centre and planting the first crop of garlic in the community garden, around 2008.

Even though I am often frustrated with my limitations, and very sad about the things I can no longer do, comparing my capabilities with the 25% of ME/CFS patients who have severe ME/CFS and are completely bedbound, makes the things that I can do seem exceptionally & tenuously precious.

For now, I can drive myself to nearby places, walk a few hundred meters and sit on a rock by the estuary, or in the bush amongst the spring wattles. I can read books, write and connect with people on the internet. I can talk with my housemates and have occasional visits with friends. I can crochet, eat most things, stand up long enough to cook for myself, water my pot plants, manage my own finances, shower and live independently. Even at my worst I can drag myself outside onto the deck to watch the clouds move through the sky and feel the breeze on my face. These are precious, precious capabilities. I don't take them for granted, and I live in fear losing them from a long-term crash.


There are young people living in nursing homes, people stuck in darkened, quietened rooms, tube fed, unable to listen to music or read, and unable to communicate with anyone as their pain and brain fog is so extreme. Some people are virtually comatose, yet they are conscious and aware of their lives passing them by. Their quality of life has been compared to terminal, last-stage cancer patients, yet their suffering is ongoing for years and mostly unseen by society or the medical profession. The suicide rate is high. And still the diagnostic tests find nothing wrong with them.

This post is to acknowledge their strength, spirit and suffering, and to ardently hope for more research funding and meaningful research breakthroughs as soon as possible.

Nancy Klimas, a doctor who has worked with both HIV and me/cfs patients has said this: 

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V."

Here is a link to a video about severe ME/CFS (8.5 minutes).

For more information, a short book on ME/CFS was recently published called The Puzzle Solver. It's available in the Hobart state library, and tells the story of Whitney Dafoe, a very severe patient, and his father Ron Davis, a renowned genetic researcher, who now focuses all his research on ME/CFS. It also tells of the decades-long struggle by countless patients and doctors for the disease to be taken seriously. The Puzzle Solver - Wikipedia. This article provides a good summary of the book, with pictures. A geneticist’s biggest challenge: Curing his own son | Coronavirus pandemic | Al Jazeera

Research into the disease in chronically underfunded, and the patients are often not well treated by medical doctors who understand it poorly. Here is a graph of funding for ME/CFS compared to some other diseases: (Source: The Male Pattern Baldness Disease? Chronic Fatigue Syndrome's Chronic Lack of Research Funding - Health Rising)

Whitney Dafoe recently began trialing a drug which has enabled him to communicate a little more, and send messages of hope to the ME/CFS community. I visit my friend in her darkened room once a month or so, and she tells me tales of the family of Tasmanian pademelons, native hens and other wildlife she can watch at out her window at dusk.
These two people may be inspiring for their ability to find beauty and hope in life, despite years of imprisonment in very sick bodies, but any research breakthroughs that would enable them to live in even 1% less pain, with 1% more ability would mean the world to them.

Donations for ME/CFS advocacy and research in Australia can be made to Emerge Australia. Donate - Donate | Emerge Australia.

Ron Davis's foundation is called the Open Medicine Foundation. They recently discovered a method to diagnose abnormality in the cells of ME/CFS patients, but were declined a grant to further develop this technology to be available in doctors clinics. Donations to the OMF can be made here: Ways to Donate - Open Medicine Foundation (

Finally, if anyone knows any GPs and can share with them, Emerge Australia has partnered with ThinkGP to produce a two-part accredited online education series based on best-practice clinical information to assist health professionals to accurately diagnose and support patients with ME/CFS. GP Education Program | Emerge Australia

Thank you for reading

(This is a Tasmanian pademelon in case anyone was wondering!)

Wednesday, 21 April 2021

5-year CFS annivarsy blog post part 2

Ok, ok, here a few more words. My last one was so short, because I feel like I’ve said everything already.

Credit: the internet (?)

Basically, my life is like this meme now, except with fatigue. 

And instead of ‘make it stop, make it stop’, it’s ‘let me out of this stupid chronic illness prison!’.


But mostly, meh, I’m used to it. This is my life now. 

It’s been five years and the longer you have this illness the lower your chances are of ever recovering. Getting sicker again last year, after two years of exceptionally slow and not-always steady improvement, was hugely disappointing and hope crushing. 

But overall, I’m still okay. 

I have never once thought “Why me?”. I’ve always thought that was a stupid question. I don’t believe in fate, or god, or at least that sort of God who has an influence on the small-scale events of the world. I’m an agnostic tending towards atheist, but hesitate to lock-in atheism because existence itself is an incredible, unexplainable miracle, a gobsmacking mystery we will never fathom. 

God or no god, I think the concept of ‘deserving’ something is inherently invalid and needs to be put in the bin. Also the platitude that god or “the universe” is trying to teach you a lesson to make you a better person, is rubbish and codswallop. You can learn valuable lessons from crap if you're not too traumatized, but nothing is “meant to be”. Although I would very much like to know the scientific explanation behind ME/CFS, I don’t believe there is any universal plan or reason. It’s just a particular version of shit that happens. Life and health is a fragile thing. Grief and loss will come to every person, in an infinite variety of shapes and forms. If I could trade in my life, for a randomly chosen life of anyone else on the planet, would I do it? No way! Chances are I’d get a much worse deal than this. And for all the shit that me/cfs is, it’s still my life, and I’ve gotten quite attached to being me. 

(Here is a more recent selfie than in my last post, which was taken I was actually only 17 - and who doesn't miss their body from 21 years ago?)

I’m going to keep missing my previous, exuberant, healthy life, sometimes more painfully than other times. I’ve got more times ahead of loneliness, frustration, miserable sickness, stress, grief and loss. When more shit happens (bushfire, and death of friends or family are the events I’m scared of most), it will be compounded by the fact that there’s nothing I’ll be able to do about any of it, not even go for a walk to clear my head. I feel very vulnerable  and I don’t know how I’ll cope, but I’ll figure it out at the time, or at least endure, one day at a time.

Maybe I talk about my me/cfs too much on social media, but I’m not constantly sitting around feeling sorry for myself. I’m very aware that there’s much to be grateful for, and things could be a lot worse. But also, my disability is significant. And the massive hooha that people made over temporary covid19 lockdown last year validates the fact that this is challenging. This is year six of me/cfs for me. I’m facing lockdown for the rest of my life. With extra periods of miserable sickness on the side, and without the ability to exercise, garden, or even do my own laundry. 

I don’t idolise healthy life - the stress of a career, the hectic pace of life. I don’t idolise having a relationship, or kids. In fact, I probably do the opposite and grinch a bit about them in my head, to try make myself feel better about being indefinitely disabled and single, and not realistically able to hope for these things. (It’s not necessarily the most generous mindset, but also relationships and parenthood are often romantically glossed over in the mainstream media). I don't think I’m  jealous of healthy people. If I see a person running or cycling by my house, I just miss that feeling in my own body. I do get a bit grumpy when people complain about being ‘stuck in town’, for say, a week, without going on an outdoors adventure. But, that’s exactly what I was like before I got sick. I thought that I needed to be off doing things all the time and squeezing as much adventure and joy into life as possible. Sitting still was boring. I am grateful for the lesson in humility, patience and slowness. I did not know my own health privilege. 

I’m going to keep trying “treatments” in the hope of improvement, even though they are most likely a waste of my time, energy and money. At the moment I’m trying a Chinese medicine practitioner, and I’m committed to giving it a go for six months before I assess whether it's useful for me. (The acupuncture seems to have a good temporary effect, but I haven’t noticed much overall benefit in 4 months so far.). I’m fortunate to be able to afford this probably futile experiment. 

There are still diets and bla bla that I should try. But also, f*&^ diets. I already eat really well most of the time, I already have a very restricted life, and I resent the weird relationship with food that stupid diets impose on me. Especially because different people are equally passionate about raw vegan,  or 100% meat diets being able to miraculously cure all ills. The TCM practitioner has told me not to eat any fermented foods, yet the internet is full of people saying they cured their autoimmune diseases with sauerkraut and kombucha. Who to believe? 

I’m 100% confident that if my health does improve, I won’t be held back from re-entering the world by fear or deconditioning. These will be factors, but I know I love doing things, and that being sick and in cfs-prison sucks. My third most heartfelt desire (after world peace and global environmental restoration) is to be well enough to be able to go for a walk in the bush again, or hang out with friends without constantly worrying about being destroyed for days from spending too much energy laughing too much.  If I start to get better, it will be an obvious feeling in my body. It will feel like “not feeling sick”. And I’m patient and experienced enough to know how to test the boundaries of my exertion tolerance ridiculously carefully and slowly. Writing this paragraph seems a complete no-brainer, but it’s not unlikely I’m going to have to explain this to another doctor in the future, who does not fully understand that me/cfs is a real physical disease and in my case, not at all correlated with trauma or mental health issues. (Sighs deeply, bangs head against imaginary wall, screams internally, feels betrayed, belittled and devalued by the medical system). 

In the meantime, I keep figuring out how to live within my limitations. This year I was approved for a library book delivery volunteer, who is much older than me, and also has a limp - a visible disability compared to my invisible one, so I feel awkward about that. But thank you to the state library and community volunteers for being wonderful!  And I’m applying for the NDIS, which I feel weird about too. But I actually am too disabled to do many things for myself, and I would be up shit creek without help from my parents and friends. 

So yeah. Five years. Shit. But there are still many wonderful things about my life. Friends, the garden, the mountain, books, dogs, when I get to go sit by the sea, and grey fantails that make cute little trills and do crazy aerial dances chasing insects above the treetops out my window. So, I’m alright. 

Here is a particularly magnificent sunset from the other night. 

Have I said anything new? 

Friday, 16 April 2021

5-year CFS anniversary blog post

What the hell happened to my body? 

What the hell happened to my life? 


A friend had a baby in the year I got sick, AND NOW SHE'S FIVE. 

Holy crap. 

Here's an old photo of me bushwalking in South West Tasmania. 

Things were supposed to be like this for a LOT longer. 

I miss it a lot. 

Wednesday, 30 December 2020

Losing ground again. My twenty twenty summary.

 2020 was my fifth year of having Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, and it was the year the world got COVID19. 

In the Australian CFS community, the pandemic actually brought several benefits. For example, access to telehealth services, more money for those struggling to get by on the lowest rates of social security, potential insight into and empathy for our condition due to it’s similarities to being in lockdown, and the sad incidence of long-haul covid creating hope for more research into post-viral fatigue syndrome. 


In Tasmania, lockdown happened between March and June. Many times I found myself rolling my eyes at the widespread angst, as unlike CFS, the lockdown was temporary, and people were still able to leave the house to exercise. But I do know it had a significant effect on the health of many people, particularly those with less housing security, in situations of domestic violence, and more susceptible to mental illness. And I would’ve responded the same had it happened pre-CFS. Still, it was a society-wide event. Many of the articles I read, about dealing with the mental health aspects of lockdown, would have made me feel much less alone 5 years ago, when I had the rug pulled out under my own feet, and vast amounts of time opened up without the ability to distract myself from loneliness, boredom, loss of control, fear, or ruminating on past regrets. It really is time to spare a thought for those of us who are enduring ongoing isolation and uncertainty, financial stress, and houseboundness, since long before and for long after 2020.

 (Nb. I am fortunate to be in Australia, where the infection and death rates from covid19 have been relatively low due to effective containment of spread, and luck). 

Later, when Victoria experienced their second wave, the lockdown protests made me think how with ME/CFS we are forced to be both our own strict governments (“dictator Dans”) and disgruntled citizens at the same time. To manage CFS well, you need to “lock yourself down”, long before you are noticeably tired, to hopefully prevent worsening of symptoms. It’s boring, frustrating, economically damaging, and it’s hard to see the point when you’re having a nice time and your glands are only a little bit sore. But prevention is better than cure, and seeing there is no cure for CFS, prevention is better than plunging oneself into weeks, months, or years of dismal post-exertional malaise, and lockdown enforced by acute, miserable sickness, rather than by sensible pacing measures. If only I was better at being my own police! 

Back in March, covid did cause me a little extra stress, but on the whole, my life didn’t change much. I might've even felt a little smug. This is what I wrote on facebook: 

Personally feeling lucky. Even though my income is small, it’s guaranteed (for now), and I live within my means. My big disruption happened in 2016. I’ve had 4 years of practice of relative social isolation, and have no major plans for the rest of the year. I already bulk buy to minimize trips to the shops and have a stash of frozen chicken soup. Of course, I’m concerned about the impacts on the rest of society, I’m a bit stressed about our household response with a couple of people having differing opinions, I’m worried about the library closing and I’ll miss seeing my friends, but overall my life has not changed much “. 

2020 had actually started off pretty well with my personal health. I was able to do quite a lot last summer, compared to the last few years. I went to see the waratahs at Mt Field with friends. Another friend helped me to go camping on Maria Island. I was doing stronger poses in yoga and hoping to build some core strength. I went on an eco-dyeing camp on the Tasman Peninsular and camping for a week at Fortescue bay. I was driving myself to appointments, the library, the tip shop, and social events. I was doing all my own food shopping, and even going for slow walks of up to 1km, which I actually put shoes on for. It was still very little compared to my previous life and very carefully managed and assisted, but it was much more ability than I find myself with at the end of the year. 

Not my photo of Fortescue Bay, a beautiful beach with a flat, easy-access campsite that is about an hour and a half drive from Hobart. (Photo from google search, sorry can't be bothered crediting properly, but it's not like it's a photo you could sell!)

Beanies and a blanket I made from wool with natural plant dyes on dye-camp in February. Dye-camp also involved lots of excellent ocean swims, with cool older ladies :) 

Starting about May, things began to deteriorate. Initially, it was only a gradual slide, and only really obvious in retrospect. I didn't really acknowledge it until September. But by November I tumbled down below the miserable line and became pretty much housebound again. I don’t know why my health went down the toilet again, and I spend too long making vague speculations. I can only wish that I had realized, and begun pacing more aggressively much sooner, and perhaps that might have helped. I had to relearn how to ask for help, negotiating the awkwardness and complexities of that, and surrender independence and control. At the moment I can still cook for myself, but I can’t do my own shopping, laundry, cleaning, gentle gardening, or go to the library. I had to cancel visiting my sicker, bed-bound friend. I haven’t been able to go sit in the bush, not even out the back of my house, as the hill is too steep. 

 The 2-week rolling average of my daily steps-count over the last four years - which is a reasonable indication of my health. Boo for the direction it took in 2020 :( 

In some ways, psychologically it hasn’t been as bad as my first year of illness. I have done this before and survived. I know about pacing better. I have better mental coping strategies. My previous life of climbing mountains, sea kayaking and body surfing is more distant. But it is still deeply, deeply disappointing. Now my hope of ever recovering is a lot less realistic than it was five years ago. I still miss what I could do in my previous life, and now I also miss what I could do a few months ago. Going to the mountain to sit amongst the trees. Going downstairs to the garden to pick fruit and vegetables. Independence. Having hope, that my upwards trajectory would continue, just because it had the last two years. It’s true that you need a lot less physical ability to be happy than I previously thought. And that slowness can be a gift. But I don’t think it’s worth pretending that sickness and the inability to do anything but shuffle to the toilet, mumble and lie on the ground is anything but plain miserable. It’s also true that occasional, temporary illness, absence, or deprivation can stop you from taking things for granted, and make you appreciate them much more when they are returned. But I think I am well past that point by now! 

The worst of my loss has been not being able to go sit in the bush or by the sea. Nature time always helps my mental health a lot. Although I tried to pretend to myself otherwise, my life is really diminished without it. One day I did feel well enough to try to go sit at the waterworks, after 6 weeks of being housebound, and while driving in, I found myself feeling pretty weird. I think because while it was not an option, I was trying to be equanimous about, and satisfied with my only outdoor time being the front yard. Which is a nice front yard, with roses and garden plants and sky and grass. But. No creeks. No wildness. No smell of forest soil. Fewer delights and surprises of nature. I had lied to myself to try to suppress the pain of missing it. And when I went back to the bush, I felt resistant to loving it again. I didn’t want to need it or love it. The feeling fell away after some time as I lay on the earth by a creek under the tree ferns, and a very cute mother duck and her ducklings came waddling by. Unfortunately, I was exhausted after the trip and haven’t tried again since. So I’m not sure, how I will manage to be okay with being confined to the front yard, while painfully missing the bush. Let’s just say that it is my first priority when, or if I have the energy again. 

Front yard view of the neighbor's roses

At some point, I realized what I was experiencing was grief. Regular, commonplace, every person, everywhere grief. Although having a chronic illness is a particular type of ambiguous grief, more analogous to a missing person, than the death of a loved one. You still ride the exhausting rollercoaster of hope and disappointment, fear, and relief. And it’s deeply personal. What does it mean to grieve for yourself, and your lost abilities? Previously I had not thought much about grief until a woman suggested me a book about it a few years ago. I have only just ordered it and begun to read slowly. 

The first chapter talks about how grief needs to be shared. But I am still wondering how, in this culture that can verge on toxic positivity. Or within the ME/CFS facebook support group which can already seem like an endless litany of misery, of people even sicker than I. And what’s even the point of talking about how crap this situation is when there’s nothing anyone can do? It’s not like I’m an unjustly detained prisoner and people can fight for my release. Although friends and family can and did bring food and flowers. They helped in the garden, gardened, shopped, cleaned for me. Some donated to research appeals. Another let me stay in their nearby bush cabin for a week. 

I tried to share just enough on facebook so people could know my reality, even when they only see me when I have enough energy to pretend to be healthy, not when I am bedbound and suffering from PEM. Maybe some people thought I was a whinger or didn’t want to hear the miserable news of my decline on top of all the other bad news in the world. But others continued to be thoughtful, generous, and kind. 

Pademelon at a friend's nearby bush cabin, where I stayed for a week in December. It was SO nice to be in the bush again. 

I’m guessing that the topic of letting go might be covered later in the book. In August, when I was still in denial about my decline, I went on an electric bike ride for the first time in over four years. The wattles were in full bloom, it was lovely, and my housemate was very kind to make it possible for me, by driving me and my bike to the start of a bush track. But after that, I crashed, and soon after that, my decline became unignorable. I thought about my lovely, expensive e-bike mostly sitting under the house doing nothing since I built it in 2016. I had great resistance to selling it because what I really really want is to ride it and not have CFS! Many people in the CFS support group shared similar stories of having to let go of items that represented their own hopes and dreams. Snow skis, a drum kit, a pottery wheel, and toys collected for their imagined future children. Someone suggested I needed to keep the bike in order to give me hope to get better, at which I balked. As if feeling sick, miserable, dependent, and stuck at home is not incentive enough to do whatever I reasonably can to try to recover. Anyhow, I have since lent it to a lady in the community who has less severe CFS than me and has been pining for her pushbike. It seems like the best possible outcome, save a miraculous recovery. Although the next step of actually selling it still feels hard. The e-bike example may seem trivial compared to the bigger things I need to let go of, like the realistic possibility of having kids, a relationship, or a career. But the conscious severing of a dream is different from a slowly diminishing possibility. 

Oh man, I really really want to not have CFS and to be able to ride my bike in the bush again. Or have less-bad CFS and to be able to ride an electric bike. I gave the e-bike a whirl in August, but it didn't work out well :( 

Anyhow, that was the big picture stuff of 2020. On a small scale this year I continued to do my yoga and meditation almost every day, except the super sick ones. The pandemic meant I was able to get digital access to my favorite yoga teacher again, which has been lovely, although I can't physically keep up with her instructions. I maintained my sleep hygiene and fussed around with a diet tracking app, trying to get enough nutrients while not gaining too much weight from being inactive. (I also stopped weighing myself in denial, as I already restrict my diet, and more restrictive diet attempts in the past have been unsuccessful and made me very, very grumpy). I dealt with several other bodily injuries, even though I wasn’t exercising, but may have been sleeping wrong. (Or perhaps it was from over-stretching in yoga, or is a consequence of 5 years of weakening muscles). I spent far too much time on screens. I binge-watched a tv show for the first time in my life, in winter when I had no housemates for a few months. I hated the feeling of addiction and tried to go cold-turkey, but watched until the end anyway. I won’t do anything like that again, only non-stressful ABC tv from now on! 

Some tiles and rocks I decorated with paint-pens over winter. The tiles have been stuck up around our garden, and I hid lots of rocks in nearby parks for kids to find as part of a game (#Tasrocks). 

I also spent too much time mindlessly scrolling facebook, often being triggered into sadness by other people’s happy photos. Five years can feel like a long time when friends have had multiple relationships, overseas trips, degrees, career changes, and houses. Babies that have turned into five-year-olds, five-year-olds into ten-year-olds, ten-year-olds into fifteen-year-olds, and fifteen-year-olds that are now twenty. Besides sometimes pettily not “liking” their post, I didn’t express my sadness. I hesitate to label it envy, as I know their lives are not perfect and facebook presents a skewed picture. And that I am better off than many, many people in the world. Still, I wished was better at being happy for other people, rather than sad about missing out. That I was better at holding my attention on the things I have, and things that are beautiful, rather than what I can’t have, or what is miserable. While trying to not deny and bottle up legitimate sadness. I am still not sure how to balance both, but I believe it’s possible. 

Trying never to take the incredible mountain view from my house in Hobart for granted 

Overall I still liked being alive. Until late October I sat in the bush. I visited friends, played the piano, painted tiles to decorate our garden, and went to music nights at our local food co-op. And even after my crash I read many wonderful books from the library, had nice housemates, ate delicious food, and drank delicious (decaf) coffee every morning. I admired my pretty garden. Flowers were delightful. I lay on the earth. I rubbed the belly of my housemate's dog. I learned some bird calls. I did a gratitude practice every day. I even made this word cloud of several months of my daily 'three happy things', so that this blogpost is not entirely depressing. 

And so, onwards into 2021. Of course, I have hopes and dreams, but unlike what a physiotherapist said to me this year, with this illness it is not okay, and actually unsafe to have “goals”. Unless your goals are to never push yourself. To police yourself better. To live with more grace within your limitations. To be better at being happy for others. To be better at asking for help and not feeling like a burden. To be better at letting go of hopes and dreams, and focusing on what you have and not what you lack. To figure out how to not close yourself off to loving beautiful things, even when you can’t have them and it hurts. To allow the grief. I still have much to learn. At the moment it's still a day-by-day thing. Which is ok. That’s what this life is sometimes. 

Housemate's dog. Enjoyed my belly-rubbing services. Provided napping inspiration. 


To practice, here are some of the things I currently have, that not everyone has, that I am grateful for and do not take for granted. The ability to read and write. Mental health. All four limbs in working order. All five senses. The disability pension. Access to the library. A good, sunny house in a nice neighborhood, with a bush and mountain view that has not yet burned down in a bushfire. A country that is not at war and has so far handled the coronavirus pandemic pretty well. Supportive and able friends and family. No abusive relationships. Enough food, and the ability to digest many delicious things. Relative lack of pain. 

Monday, 16 November 2020

A rant about bullshit things you should try not to say to people with me/cfs)

ME/CFS, “Chronic fatigue syndrome” is a stupid name that perpetuates misunderstanding about the disease. Chronic fatigue, because anyone can get unhealthily tired, run down or burnt out sometimes. “Myalgic encephalomyalitis” because it falsely sounds like there is some scientific understanding of the disease. Myalgic means muscle aches or pains and Encephalomyelitis means inflammation of the brain and spinal cord, however the ME association says “there is no significant or consistent pathological evidence to support the use of these terms”.

The name, the lack of societal understanding, the lack an diagnostic test, the fact that all of our test results keep coming back normal, combined with the occasional ignorant comments from people we come in contact with, can have a very harmful effect on both our mental and physical health.

Personally I don’t feel particularly vulnerable, as so far in my life I’ve been lucky to have had fairly robust mental health, and lucky that such comments have been few and far between. Most people around me are pretty good at being sensitive, respectful of my intelligence and knowledge of my own body, and not-stupid!! However the other day I encountered some of the stupid, and it fired me up.

Every now and then, I try a bit of a woo-woo treatment, coz you just do never know, and it’s not like mainstream science has anything for me yet (thank you decades of research funding neglect). I signed up for an “intuitive massage”. I have had (different) treatments from the owner of the business before and I like them. They are humble, non presumptive and kind, and I thought they might make wise decisions about who they employ, or hire out their space to. But although the massage I received from this new practitioner was good, the “intuitive” bit was bullshit. Generic bullshit you could say to anyone, but would you ever say it to someone who had an actual diagnosable disease that wasn’t “chronic fatigue?” Something like cancer? I really hope not. For example, she said “my intuition says you won’t get better until you really want to, and maybe you don’t really want to”. And, “I think that deep down you know what caused this, but you haven’t been willing to go there”.

Aghghgh. Such crap. She also had some “intuitions” that I should avoid gluten and dairy, spend time in nature with bare feet (“grounding”) and write out my feelings. (Well here I am writing out my feelings lady!!!). I do know that some people might experience prolonged fatigue that is not of the same medical origin as whatever ME/CFS is. And if they eat less crap and more vegetables, get better at stress reduction, and perhaps get professional help with past trauma or treatment for medical depression, they will regain their lost energy.

But my disease is not this. It is not in my head. It is a serious malfunction of some part of my body, probably immune-related. I am not just burnt out, kale deficient, or shit at facing up to repressed emotions. (I am not claiming perfect at any of these things, just a regular work-in-progress human). I am not depressed, although this is a common consequence, rather than a cause of this disease.

I shared about this on the M.E./CFS support group and many people shared similar experiences, grief, frustration and anger. People with ME/CFS have been medically gaslighted for decades, not just by woowoo practitioners, but by mainstream medical practitioners, friends, family and random people we’ve just met, who’s friend’s cousin recovered from “chronic fatigue” because they did (.......insert particular diet, supplement, meditation practice bla bla bla........). I know these unsolicited-advice-givers just want to be helpful, but if someone has had this disease for a few years already, chances are there’s not much we haven’t tried already.

Somebody described the behavior of this therapist as “not intuition, but projection, counter-transference and spiritual bypassing”. I have met many people who are really into this sort of magical thinking, and it has often pissed me off, but I do feel compassion for the unhappiness that underlies it, and understand how seductive it is to hope you have more control over your life simply by applying a bit of positive thinking and woo *. And maybe some of it really works for some people, by reducing stress. Gratitude, visualization, yoga, meditation and vegetable-eating are all wonderful, worthwhile practices. Just, please don’t ever say or suggest something to someone with ME/CFS that you would not say to someone with cancer, Parkinson’s, MS, or any other “real” disease. Our disease is real too. More vulnerable people can form serious doubts about themselves, feel guilty about being a burden and physically push themselves more than they should and get seriously sick.

Thank you, rant over.

**And I’m a little bit susceptible to hopeful/magical thinking myself - which is why I do try a bit of woo every now and then. Also because the placebo effect can be powerful. And because there are lovely alternative health practitioners who don’t serve up bullshit as a side. You can be treated with much more care and empathy than you are in a 10 minute conventional doctor appointment. Maybe the most valuable thing is that you get to lie down for an hour and do nothing else! And I’ll admit also do it occasionally to try prove to certain people that I am not a completely close minded scientific rationalist, because I think some people judge me negatively for this! I do see the flaws and gaps in science! It’s a complicated mix of reasons 

Tuesday, 21 April 2020

Coping with Covid 19 - lessons from CFS

Three years ago, I’d been really, really, really sick for a WHOLE YEAR, I was not getting any better, and I was having to come to terms with having an incurable mystery illness, that I would potentially never recover from. It was a period of rapid, uncomfortable, painful readjustment of my life's expectations. The rug had been pulled from under my feet. A little bit like it has for everybody else now. 

The coping strategies I learned back them are just as useful for Covid 19 now. I learned some myself through sudden or gradual insights, but mostly I learned from reading the writings of other chronically ill people, such as in this post: 

Sick people may be physically vulnerable, but can have a lot to teach us all about resilience, joy, emotional strength, adaptation, grief and acceptance. Which is one reason I think we need to do all we can to stop the spread and flatten the curve, so they don’t all die and we’re only left with arrogantly healthy people. (NOT that all healthy people are arrogantly healthy, but I kinda was before CFS) 

You’ve probably heard these a lot of these ideas before, maybe on annoying cheesy wellness memes, but hey, they got memed for a reason. Here's a list of coping strategies, that work for me. 

  •  Do a mediate minimum once a day. You might be crap at it, but you sit there and you practice anyway. Start with an app if that helps. I use Insight Timer.


  • Go to the outside to the nature minimum once a day, to a leafy green or watery blue place, even if it’s raining. Get some of your body on the earth if you can. Feel some fresh air on your face. Notice the small things.


  • Move your body, minimum one hour a day, even if it’s just your toes and hands or even just in your imagination. I do a yoga, or a qi gong or a wiggle around in the floor, or a very slow walk. There's lots of tutorials on youtube. (If I was healthy I would walk and ride my bike and swim, but there’s something to be said for really slow mindful movement too, which I have been forced into learning since CFS).

  • Gratitude: three happy things, minimum once a day before bed. There is always something.

  • Try replacing “I got to” with “I get to”. 
  • But you don’t need to be fake happy! Sad is OKAY. Fear is okay. Boredom and loneliness is okay. All the feelings is OK. Allow them, don’t fight them or try to stuff them away. Have a cup of tea with them. Lean into them. Find out about them. They might have some stuff to teach you.

  • Excess of sugar is not yawww friend. A lower carb diet has been good for me. 
  • Have a laugh! Crack a funny. Dark humour if it’s safe. The world really is absurd. 
  • Awwww dogs, i wish I had a cute funny furry wet snozzled dog, even though they are gross and eat poo. 
  • Parasympathetic nervous system activation - deep, conscious breathing, noticing the pauses between the in and the out breath, singing, imaginary qigong for me. 
  • Limit the SOCIALs. (Wish I was better at this rule, I suck at this rule. I try have screen free Sundays, and ideally I’d fast 2 days a week, but so far I FAIL.)
  • Yoga nidra and naps. 
  • Mindful hand wash breaks (this is a corona newbie. Washing your hands mindfully with soap and warm water is really nice!)
  • “Don’t know” mind, to try stop panic thinking spirals of fears that you are probably just imagining. Like, hey is what I’m thinking actually true? How do I know that's it's true?

  •  “This too will pass”. 
  • One day at a time. One step at a time. Bring your focus back into the now, rather than imagined future panic. Touching your body, or noticing something physical around you can help disrupt the panic thought spirals. 
  • Star gaze or cloud gaze with feet on earth. Perspective. 
  • Don’t expect to “bounce back” from this. We are moving through this and growing from this. We will be different in the other side, and hopefully wiser and kinder.

  • Just be nice to yourself. Treat yourself like you would a friend, don’t say mean things to yourself and forgive yourself when you are, inevitably, a bit of a donkey. 
  • Ask for help ya monkeys! Lots of people really love helping, and it would make them feel really good right now to help. (But they might need specifics). And on the flip side, if you’re doing okay but have lots of time, helping makes lots of people feel good, so maybe it’ll make you feel good too. 

Many of these practices are easier said than done, and what works for you might be different to me (maybe thrash metal, primeval screaming and punching bags is your thing, I hope you can find a place to do this). I know I am lucky to have had a good mental health baseline, a home and a amazing supportive community around me, so it’s not necessarily all that easy. And I still get stupidly, unhelpfully stressed sometimes. I really need to remind myself this list too right now.

Here are some more links to previous blog posts of mine where the lessons I learned can also be applied to COVID19.

Please look after yourselves people, I hope this helps.