This one’s for my #pwME/POTS/EDS/Fibro/Lyme/MCAS/MCS and all the other ‘MUS’
A year ago, for Severe ME Day, I wrote about my apparently inexorable descent back to the severely disabled state I was in 25 years previously as a consequence of a major relapse and long term degeneration. I’m writing this update now in the wake of Jeff Woods’ and Jen Brea’s testimonies, in case anything happens to me before I can complete the detailed account of my recovery back to ‘moderate’. I’m 18 months behind in my travel blog and wanted this evidence in the public domain for people with ME and suspected cranio-cervical instablity (CCI) as soon as possible.
I have written before about my fairly typical viral onset aged 22, how I went from acute to mostly bed- or house-bound through my mid twenties. What is not typical is that cold weather seemed to exacerbate all my symptoms, so I emigrated from UK to South Africa in 1994. Thanks to the climate and a Taiwanese doctor practising Chinese acupuncture, I slowly improved to the point where, from the age of 28, I was able to work and I managed to maintain at ‘mild’ through my thirties.
But when, approaching 40, I felt my stamina deteriorating again, I knew I couldn’t sustain even my work-from-home job. As neither my energy or the planet’s is renewable, my husband and I came up with a cunning plan to survive. In 2013, having spent 3 years converting an ex-army truck to run on recycled waste vegetable oil, our family rented out our house and left Cape Town to travel Africa Clockwise.
That first year travelling up the west coast of the continent, I felt better living at my own pace: homeschooling the kids, with no need to battle deadlines, traffic or stress, eating when hungry, lying down when tired, gifting myself early nights and gentle days. I had an epiphany when I got malaria and typhoid at the same time and I realised that ‘severe’ ME in my 20s had been significantly worse on a daily basis. I had been more ill than I’d ever realised; so that meant I was stronger than I knew.
In Cote d’Ivoire in 2014, I had a stupid little accident. Starting up the Big Green Truck, my husband pulled away and hit a pothole just as I bent over to lock down the fridge: the jolt smashed my head against the wooden side of the bed. The concussion took a week to subside but it took a year for my neck and back to come right – I eventually got some physio when we evacuated from Liberia. The Ebola pandemic forced us to remain in the UK over a winter (in a bedroom with mould up the wall); this precipitated my worse relapse in 20 years and scarily undermined my baseline.
We returned to the truck in 2015 and made it up the west coast to Morocco in 2016. As it’s currently inadvisable to drive through Libya, we were obliged to travel across Europe. A breakdown in France in 2017 had us stuck from July until September looking for parts, so we ended up travelling down the Adriatic coast in early winter. Temperatures were far too cold for me to cope and my capacity started plummeting, about 10% for every degree below 20˚C. We managed to get the truck back from Greece to Egypt by November, but in December I had a disastrous fluke accident.
The base of our mini-Christmas tree – a lump of plastic weighing perhaps half a kilo – fell out of a cupboard directly on top of my head, giving me another concussion. It wasn’t as bad as the 2014 neck injury, but the consequences were far worse.
I had constant nausea, a feeling like I had a Giant Wobbly Puppet Head and a racing heart whenever I stood up. These debilitating POTS symptoms didn’t improve with rest. All my ME symptoms worsened dramatically; I was perennially exhausted, battling relentless insomnia and adrenaline surges all through the night, and an inability to cognitively process during the day. Antibiotics for typhoid twice in three months through the too-hot deserts of Sudan and too-cold mountains of Ethiopia didn’t help my recovery. Neither did my ongoing peri-menopause.
But the big shock was that, even when we reached the kinder climate of Kenya, I didn’t get my strength back. In the warm, I was expecting to start feeling stronger within a few months, but I just wasn’t coming round. Worse was my increasingly extreme reaction to the vibration of driving – I stopped being able to travel in the front seat and was confined to my bed in the back of the truck with no view.
My complaints about ‘jangly head syndrome’ – a feeling that someone had taken me by the neck and shaken me violently, triggering an avalanche of symptoms – led to my husband trawling all the pharmacies in Mombasa for cervical collars before he found one firm enough to give me some relief: the Philadelphia model.
But the constant POTS and PEM got so bad, we had to abandon plans to travel through Uganda, Rwanda and Burundi because it was taking me 3 days to recover from the vibration of driving just one hour while lying down in the back. We rather spent another 3 months more or less stationary on the balmy Kenyan coastline trying to stabilise my symptoms. Progress was painfully slow, but I eventually improved to the extent that I could walk 100m on the beach every two or three days; that’s when I wrote last August’s blog: ME Too or Why I Am No Longer NOT Talking to Doctors About Chronic Illness.
Last November, thanks to Jen Brea publicising her discovery of it, I read Jeff’s Mechanical Basis for ME website. I hadn’t connected the severity of my 2017 relapse with head injury until then – I was used to blaming the cold. But this explanation made complete sense to me, mostly because I had discovered in Egypt that the only time I felt I could breathe properly was during my daily warm-up for T’ai Chi while doing a ‘downward facing dog’ stretch – with my head hanging free from my spine.
For five years, since the initial bash on the back of the head in Côte d’Ivoire, I have been using an empty cinnamon pot as a focussed massage tool. I gently roll to and fro on it as it’s exactly the right width to relieve the constant throbbing at the nape of my neck. I used to explain this two-pronged pain in shorthand to my kids by holding up two curved fingers, because it felt like I had a meat-hook lodged in the base of my skull.
Stationary on the coast of Tanzania over Christmas, reflecting on Jeff’s account, I thought back and remembered other possible contributing factors.
Aged 10, in the first week of my first term at secondary school, I was sitting outside one lunchtime with my back to the netball courts when a hockey ball sailed over the chicken wire fencing and landed on my head.
The shock was intense. I couldn’t work out what had just happened – I first thought someone had come up behind me and thumped me directly on top of the head with their closed fist and I had no idea why. It was very very sore and I felt very dizzy and unwell, but I was so embarrassed to be attracting attention, I didn’t tell a teacher and I don’t think I even mentioned it to my parents.
During the next two years, a netball at close range broke my nose and a wallop from a hockey stick resulted in stitches under my eyebrow. Presumably any or all of these minor head traumas could have acted as a mechanical trigger.
Alternatively, evidence suggests that the long term siege on the immune system that is chronic illness may have undermined my collagen production to the extent that, after 25 years with ME, I was vulnerable to CCI, either caused or exacerbated by a succession of minor head injuries and years on bouncy roads while travelling in the truck.
Armed with this new knowledge, and feeling like Wile E. Coyote, I set out to create the ‘ACME patent anti-CCI head stabiliser’ to keep my head as still as possible while driving:
I was just about surviving an hour every other day on east African roads (far fewer potholes than west Africa) when one day in January this year, an empty tupperware rolled off my son’s bed in the nose cone above the passenger seat and hit the container cushioning my head. It was just a glancing blow, but at the worst possible angle. I knew immediately I was in big trouble.
My husband was doing a comedy show in Dar es Salaam and we’d been given a free suite in the hotel next door to the theatre for a few nights. I’d been looking forward to such rare luxury (a powershower… soft clean towels… privacy) but now I was feeling so grim, I couldn’t take advantage of it. The pain, vertigo and nausea were so extreme, the room was spinning, and I felt terribly ill. All I could do was lie in bed with my eyes shut; I couldn’t even watch the fancy flat screen TV with my son. I was devastated: had all the gains I’d clawed back so painstakingly slowly over the last 8 months been blown in one fell swoop?
Desperate times call for desperate measures. I decided I had nothing to lose and now was the time to test my hypothesis. On the third morning, my husband helped me to the hotel pool. He stood in a corner of the shallow end, and held my head from underneath as I floated on the surface. I braced myself with my hands against the sides of the pool and cycled away from him with my legs.
He couldn’t believe the force I put on his arms. But firmly and carefully I just did what I instinctively felt I needed to do to free my spine.
The effect was immediate – the first thing I noticed was that I could see more clearly. I hadn’t even realised my sight was compromised, but suddenly the sky was much more blue and everything was brighter and somehow more in focus. I stood up – and I could breathe. I hadn’t realised how much my oxygen intake been restricted. Suddenly I felt so much better. Not only had we corrected what the sharp tap on the head with the tupperware container had done, we seem to have remedied the klap from the Christmas tree catastrophe. I felt sturdier than I had done in over a year.
At the time, it seemed like a miracle. I did not write or even tweet about it until I was sure this wasn’t some flash in the pan. But it has proved to be sustainable improvement. What’s more, whenever I feel myself slipping, I find some water and do it again – and it works again. Not as dramatically as that first time, but consistently: like Jeff in a halo brace, I can see better; like Jen in traction, I can breathe better; overall I feel much better. Once the PEM from the exercise has subsided, I have less pain, less nausea, fewer symptoms.
Jennie Spotila’s dire warnings about the risks of cavalierly messing with your neck (including stroke) are completely valid, and I am not recommending this as a DIY course of action. I am just sharing my findings in case you have the good luck to find a professional physio brave enough to work with you to experiment. Out in east Africa, in the absence of anyone with the foggiest idea about chronic illness let alone any specialists in the field, I had no choice but to take matters into my own (husband’s) hands.
Please note: we only ever do this a) in water and b) after I’ve done half an hour of T’ai Chi to warm up all my muscles and joints and c) about once a month. I have to wear a wet suit if the water is below 25˚C. My husband’s fingers anchor either side of my skull at its base and he holds my head steady – he doesn’t pull. I aim to be as flat as possible and he may sit on the steps of the pool ladder to be at the right height. I can anchor myself best in a corner of a swimming pool, otherwise I have to brace against his legs.
I cycle away three times for about 30 seconds each. That’s enough. If I overdo it, this DIY traction can cause inflammation. But brainstem compression symptoms are always reduced. I always feel relief.
While stranded in garages in Malawi between March and May, away from the sea, I tried pulling my head down gently while leaning on a wide strap – but it felt more dangerous and was less effective. Far too hit and miss. Don’t risk it.
Six months later, I look back on 2018 like I had a bout with a life-threatening condition and survived. That’s what it felt like. I was nowhere near as drastic a case as Jeff or Jen (who suffered periodic paralysis and apnea) but their testimony made sense of what was happening to me, and has enabled me to help myself before I deteriorated to that stage. Perhaps this is a way to keep CCI at bay, I don’t yet know.
Whether this is a reprieve or just a respite, I am very grateful. I know it’s not over – I still have ‘moderate’ ME and I know that any day I could slip back to ‘severe’. But life at 50% bed bound is very different from 85%. Last year I was upright for about one hour per day in total and I was barely able to be in the world. This month I have sometimes had 3 or 4 upright hours in a day. I still have PEM, but after doing something consequential like handwashing or taking a 2km beach walk, not after having a shower; dizziness is occasional, not constant.
Best of all, my cognitive capacity has returned – I can think again, spell again, write and edit faster, contribute to society. (I’ve helped my teenage daughter and colleagues organise two climate strikes in Cape Town this year, managing logistics and PR from my bed). I no longer feel like a zombie. I no longer have massive adrenaline surges everytime I wake during the night. I no longer feel like I could have a heart attack at any time. I no longer feel that I am treading a fine line on the edge of existence. I’m back in the land of the living.
I’m back and I’m angry – that all this suffering of mine and so many millions of others may have been avoidable if evidence pointing to the neurological basis of our disease 30 years ago wasn’t ignored by psychiatrists trying to make a career for themselves. My lucky packet of domino triggers from viral infection to bacterial infection, concussion, mould, ciprofloxacin and sheer bloody female hormones has never been adequately explored. ‘Medically Unexplained Symptoms’ just means the numbers haven’t made it lucrative enough for Big Pharma to bother to devote the time and cash to investigating it properly yet.
They said MS was ‘all in the mind’ before the MRI was invented. They said stomach ulcers were stress-induced before the discovery of helicobacter pylori. Yet medical professionals are still gaslighting people with ME and insisting that we’re delusional when it seems many of us have been living with the symptoms of brainstem compression as a result of spinal damage for most of our lives.
News of Jen’s recovery from ME after surgery for CCI in May this year, coming so soon after the announcement of the discovery of the ‘nanoneedle’ biomarker by Prof Ron Davis in April, must have set off a panic amongst those whose vested interests lie in keeping chronic illnesses psychosomatic and thus Nightingales’ disability and insurance claims dismissable. Potential group action lawsuits for medical negligence damages are shaping up to surpass all previous records.
This almost guarantees a propaganda backlash bigger than that provoked by Dr David Tuller and our trusty patient-scientist cohort’s ongoing debunking of the results of the PACE trial. So brace yourselves pwME. Since I started drafting this blog, it’s already begun…
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The sharing of good science is all the more urgent when incidents of parents of children with ME being accused of FII (Fabricated or Induced Illness) by educational and medical authorities continue to rise. Jane Colby of the Tymes Trust, who has been monitoring children with ME in UK since the 1990s, says the number of families who have been investigated has now reached 232, with over a hundred cases in the last 5 years alone.
In the last week, 17 year old Jehan ‘Gigi’ Joseph has finally been released after four months in Lewisham Hospital in UK after a Consultant declared she did not have severe ME (despite being unable to eat, speak or walk) but ‘Pervasive Refusal Syndrome’. Her mother Dionne (a clinical psychologist with 20 years’ experience) was threatened with police action and had to bring in the combined PR weight of international ME advocacy to prevent Gigi being sectioned under the Mental Health Act and confined to an Adolescent Psychiatric Unit.
In the US there is outrage that immigrant children are being separated from their parents and kept in cages; in the UK, Australia and Denmark the same is happening to sick children with ME, when their parents insist they are physically not mentally ill. Will it take Amnesty International stepping in on behalf of kids like Gigi before this abuse is recognised as a human rights issue?