There was no denying it. Sampson was in love.
Can your husband have an affair with a dog? Granted, Monte was a darling. Young, energetic, doe-eyed, silky-haired and constantly adoring – what’s not to love?
So we went back to the lovely vet Dr Dimitri and got Monte and Lucky jabbed, microchipped and registered for €100 each.
But Preveza felt as tired and put upon as I was. The evidence of EU-imposed austerity was everywhere. There were so many empty shop fronts in the backwater towns – about a third of every high street – Greece had a feeling of being half abandoned itself. The run down pet shop was full of dust and piles of faded stuff.
As the pattern of being awake from 2am-5am between doggy doings became entrenched, everything was taking longer. Two hours to get up, then T’ai Chi was becoming slower and more painful. I was feeling sick all the time, not just nauseous after eating. I strapped myself into the passenger seat surrounded by cushions, with a travel pillow to support my neck and carried on. But whenever we stopped, the resultant brain-rattle hangover was making me feel very ill indeed. I was beginning to wonder if I could even withstand travelling in the bumpy truck all the way home.
* * *
By some cruel twist of fate, the person most responsible for the misrepresentation of M.E. – a disease first documented by Dr Melvin Ramsay following an infectious epidemic amongst 292 staff at Royal Free Hospital in 1955, mostly nurses – is Dr Simon Wessely, a fellow graduate of University College, Oxford.
He followed up on the work of McEvedy and Beard, two male psychiatrists, who in 1970, the year I was born, reexamined the Royal Free case notes and reported that “there is little evidence of organic disease affecting the central nervous system… and epidemic hysteria is a much more likely explanation…The data which support this hypothesis are the high attack rate in females compared with males”. McEvedy CP, Beard AW. Royal Free epidemic of 1955: a reconsideration. BMJ. 1970 Jan 3;1(5687):7–11
McEvedy and Beard came to this conclusion without interviewing any of the patients themselves, many of whom remained too ill to work decades later.
Sir Simon Wessley took this patronising arrogance to the next level in the late 80s/early 90s – deliberately recasting M.E. as a psychosomatic condition called ‘Chronic Fatigue Syndrome’, a term adopted by the Centre for Disease Control in the US in 1988 following the Lake Tahoe epidemic of 1984/5 affecting around 175 people in Nevada, which was infamously characterised in the press as ‘Yuppie Flu‘.
This summary of Dr Wessley’s contribution to M.E. research (or the derailing of it) by the heroic Margaret Williams is well worth reading if you can stand it. I’ll be honest, it took me four months to work up the strength to do so because when it was published last Christmas I was at such a low ebb, I knew if I attempted it, my anger would lay me out flat for a week.
Let me try and distill the dilligent labour of Margaret Williams into a few choice quotations:
“Dismissive of the fact that the WHO has formally classified ME/CFS as a neurological disorder since 1969, Wessely has spent the last 30 years denying the existence of ME and striving to get “CFS/ME” re-classified as a mental (somatisation) disorder…
Not only has he consistently denigrated people with ME, but he has dismissed, ignored or ridiculed the substantial body of international biomedical evidence published over the last 30 years that proves him wrong… it worth noting that the Medical Research Council itself now acknowledges that there is evidence of immune dysfunction and inflammatory mechanisms in the brain and spinal cord of people with ME.
In 1989 Wessely wrote in the British Medical Journal:
“(neurasthenia) is back with a vengeance. My local bookshop has just given ME the final seal of approval, its own shelf. A little more psychology and a little less T-cells would be welcome”. (BMJ 1989:298:1532-1533).
Much was already known at that time about the role of dysfunctional T cells in ME/CFS but such was Wessely’s influence that his personal beliefs prevailed throughout the NHS: important research findings were ignored, with Government and other institutions such as the medical insurance industry gratefully and uncritically accepting as fact Wessely’s assertions that ME/CFS is a behavioural disorder, thus depriving claimants of financial support to which they were legitimately entitled….
Wessely is renowned for his damaging assertions about ME/CFS, some of the more memorable ones being:
“Most CFS patients fulfil diagnostic criteria for psychiatric disorder….Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. Do any of these symptoms possess diagnostic significance? The answer is basically negative…. It is of interest that the ‘germ theory’ is gaining popularity at the expense of a decline in the acceptance of personal responsibility for illness…. The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ” (In: Psychological Disorders in General Medical Settings Ed: N Sartorius et al Pub: Hogrefe & Huber, 1990)
“It seems that ME sufferers prefer to feel that they have a ‘real’ disease – it is better for their self-esteem (and) the label ‘ME’ helps legitimise their dealings with doctors” (Report of meeting held on 15 April 1992 at Belfast Castle; Pfizer Invicta Pharmaceuticals, pp4-5)
“I will argue that ME is simply a belief, the belief that one has an illness called ME” (9th Eliot Slater Memorial Lecture, Institute of Psychiatry, London, 12 May 1994)
“The term ME may mislead patients into believing they have a serious and specific pathological process….The possibility that abnormalities of immune function play a role in the pathogenesis of CFS has attracted considerable attention. Such abnormalities should not deflect the clinicians from the biospsychosocial (psychiatric) approach and should not focus attention towards a search for an ‘organic’ cause….No investigations should be performed to confirm the diagnosis” (Joint Royal Colleges Report on CFS, October 1996)
“The majority of patients seen in specialist clinics typically believe that their symptoms are the result of an organic disease process…. Many doctors believe the converse….Many patients receive financial benefits and payments which may be contingent upon their remaining unwell” (Gen Hosp Psychiatry 1997:19:3:185-199)
“It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering …..One challenge arises when patients have named their condition in a way that leaves doctors uncomfortable, as occurred with chronic fatigue syndrome….It may seem that adopting the lay label (ME) reinforces the perceived disability. A compromise strategy…would mean treating chronic fatigue syndrome as a legitimate illness while gradually expanding understanding of the condition to incorporate the psychological and social dimensions” (BMJ 2003:326:595-597)
It was twenty eight years after Wessely successfully called for “more psychology and less T-cells” that on 27th December 2017 The Open Medicine Foundation announced the First T cell Project Meeting for the ME/CFS Collaborative Research Centre at Stanford.
““OK folks, nothing to see here, move along please” seems to have been his standard response to everything he has investigated when he has been proved wrong, for example, ME/CFS, Gulf War Syndrome, the potential dangers of mobile phones, and the Camelford poisoning disaster, a stance which seems to have made him useful to UK Governments of whatever party and he has been rewarded accordingly: a knighthood and a Regius professorship are not awarded for speaking inconvenient truths that may expose vested interests and the incompetence and liability of Departments of State….”
* * *
We paused in Itea, a humble little town on edge of the Gulf of Corinth. I imagine it’s very busy in summer, but there were no tourists in winter, and you got the feel of an intimate community going about their business.
I loved how in Greece, bicycles everywhere were left unattended, unlocked. Kids playing carefree on the jetty would throw their bikes down and run off laughing. This would be unimaginable at home in Cape Town. What a lovely way to be.
First thing in the morning, Sampson and son were outside in the sunshine taking Monte on his first walk around the harbour. They made a video of Zola doing tricks on his unicycle – it was just 6 weeks since he got it. I was unable to take part in that section of day because it was taking me so long to get up. Monte was getting stronger, wrestling Lucky and giving as good as he got. His legs were a bit wobbly, but he was trying to gambol. I felt a similar level of capacity myself.
* * *
Following my diagnosis in late 1993, I started arming myself with information.
My mother was horrified at the list of recommended dietary restrictions that arrived in the post from Action for ME: “What on earth are you going to eat?!” But only by cutting things out of my diet, did I become able to recognise the drastic effects they had on me when reintroduced and how much energy they consumed as I struggled to digest them.
One of the first things that pwME (people with Myalgic Encephalomyelitis) realise is that they competely lose all tolerance to alcohol. I hadn’t been able to drink since an epic night on Mekong whisky in Thailand in 1992, as now the after-effects of even half a glass of wine were so horrible: legless and the hangover from hell. Now I came to realise that caffeine gave me an instant migraine. Sugar made me nauseous and sweat buckets. But by far the greatest culprit was gluten. As soon as I stopped eating wheat, I started feeling better. Eventually I reluctantly had to abandon rye and oats as well. The consequences were too blatant to be ignored: 8 months’ pregnant-bloating within 20 minutes, excruciating pain and a feeling of toxic shock.
After several months of trial and error, I found that sticking to rice, pulses and vegetables was least demanding on my system. Anything processed, anything with additives, anything unnatural would immediately make me ill. I found myself lucky amongst pwME that I could still tolerate fruit. (I may not have been able to get drunk in 25 years, but I have been incredibly blessed to enjoy melon, mangos and strawberries. How would I have survived this trip without being able to eat bananas?)
I found out there were some famous people who had M.E.: round the world yachtswoman Clare Francis and Chariots of Fire director David Puttnam among them. Florence Nightingale and Charles Darwin, who both retired indoors with unexplained conditions after hyperactive early lives, were also suspected sufferers. I wondered if ME might be what had affected the poet Elizabeth Barrett Browning and why she loved living in Italy.
(Since then jazz pianist Keith Jarrett, author Laura Hillenbrand, soccer player Michelle Akers, director Blake Edwards, actors Cher and Michael Crawford, musicians Randy Newman, Stevie Nicks, Flea from Red Hot Chilli Peppers, the keyboardist of Suede, the lead singer of Belle and Sebastian, rapper Trip Lee and Lady Gaga have joined the list.)
Our harassed and exhausted Coventry GP, who hadn’t given me more than 5 minutes attention before, turned out to have a wife incapacitated with M.E. for more than a decade. But even he couldn’t give me any useful advice beyond ‘Rest, rest, rest’. Still, I could not keep warm. I couldn’t stand up for more than a minute. The only way I could go shopping was on a municipal mobility scooter looking like a pensioner. Except a pensioner wouldn’t be laid out flat for 2 days afterwards. I sat huddled indoors by the radiator in a black wool overcoat. More than once I had muscle-spasms around my heart so severe that I couldn’t breathe in for several minutes. There was no option but to learn to be patient the hard way: keep calm or you don’t get to carry on.
Desperate times call for desperate measures. My Mom decided to send me to stay with her sister in Johannesburg, a place I had never planned to visit, but with an average February temperature of 26˚C.
It was 1994. What a time to witness history happening in South Africa.
* * *
A group of giggling girls about Ruby’s age watched me do T’ai Chi that morning. After I finished, I went over and explained to them what I was doing and why:
“Don’t laugh at other women. Life is hard enough, we must stick together.”
Chastened, they agreed. One of them told me proudly that she did Tae Kwon Do.
They explained they were off school because tomorrow was the Public Holiday Ohi Day commemorating 28th Oct 1940 when their prime minister Metaxas defied an ultimatum from Mussolini, with a spirited “No!” which prevented an Italian invasion and precipitated Greece’s entry into WWII. This was why the sea scouts were practising marching up and down with their flags. I hiked up the road to get copies of documents for Ruby’s Egyptian visa so that Sampson could post the original Parental Consent Affidavit to SA to allow her to travel.
During school time, I read a review of the film Unrest, written by a woman with severe ME who said the opening shots of the film where the protagonist was crawling up the stairs had only made her feel jealous, as she hadn’t left her bedroom in 15 years. This gave me some much needed perspective. I felt gratitude to be in the world at all, even for fraction of the day. I wrote in my diary:
“I am very aware that if I was living at home, I would not see my son at all during my functioning time of day. In this moderate state, before 10am and after 5pm I’m pretty useless. So I feel very lucky to be spending lucid time with him when he can still experience me as an intelligent being.”
The bitter wind had me piling on boots, a jacket and my fake furry leopardskin hat to go one block to the supermarket. Zola was also feeling hyper-sensitive, but to the sharp looks and suspicion of the refugee-wary locals:
“Mom, what percentage of people are racist?”
I didn’t want to dismiss or downplay his fears so I explained the background to theirs, but to cheer him up added,“Don’t underestimate how gorgeous you are – quite a lot of those looks are ‘wow’ ones – you’d better get used to it for when you’re famous!” I’d seen the girls checking him out that morning…
It worked: he gave me a sheepish grin. We drove out of town and found a quiet place by a deserted hotel, next to the sea.
* * *
The Wessely School’s convenient blurring of the distinctions between people suffering debilitating fatigue as a result of clinical depression and other chronic conditions and people with ME, an organic neuroimmune disease caused by an as yet unidentified viral trigger, has led to GPs insisting on inappropriate and – in a tragic number of cases – detrimental treatment advice.
Wessely-sanctioned Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are the only treatments currently offered by the NHS to ME patients. Yet the results of the enormous PACE trial, published since 2011, ‘proving’ their effectiveness have been thoroughly discredited – thanks to the superheroic efforts of an international cohort of citizen-scientists and maverick Californian investigative public health journalist Dr David Tuller exposing egregious scientific shortcomings and manipulation of results. Open letters 2015-17 to The Lancet and Psychological Medicine signed by more than 100 scientists and 50 ME charities from countries around the world asking for an independent reanalysis of the data have yet to receive a response.
As the Independent has noted in an excellent summary of the history of ME so far:
“Throughout it all, patients were depicted as dangerous militants in the media for criticising the trial, even though they turned out to be vindicated.”
Dr David Marks, Editor of the Journal of Health Psychology has concluded:
“The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the PACE trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”
GET has proved significantly counterproductive, leading to many moderate pwME relapsing with post-exertional malaise into years of severe suffering. Unsurprisingly this has caused depression and despair for many.
The following are difficult to read, but please, I beg you, as we approach #MillionsMissing ME Awareness Day on May 12th, do the mothers of these young women the courtesy of clicking on their names and bearing witness to their stories:
In 2017, after 6 years bedridden, 10 days after her 21st brithday, Merryn Crofts passed away and became the second person in the UK to have ME cited as cause of death. Those of us outside UK can’t see this Channel 5 news clip of her mum Clare Norton, but read her account of her daughter’s bravery and salute her dignity:
“what other illness gives the least attention to the worst affected?”
The first person to have ME on her death certificate, Sophia Mirza, died in 2005 after 6 years’ illness aged 32, when she suffered a massive relapse after being forcibly sectioned and locked in a psychiatric ward for 2 weeks despite the desperate efforts of her mother Criona Wilson to protect her.
Australian Alison Hunter died in 1996 aged 19 after a decade of suffering. She was the founding president of MEYA (ME Young Adults) in Sydney.
Lynn Gilderdale‘s mother Kay, a former nurse, wrote this open letter following her acquittal of murder after assisting her daughter’s suicide in 2008. Lynn was 31 and had been severely ill – almost impossibly ill and yet still alive – since aged 14:
“I wish with all my heart that I knew at the start of Lynn’s illness that graded exercise at this acute stage causes further damage. She could have been spared seventeen long years of unimaginable suffering if we had done the right thing at the beginning and listened to what she told us.”
Martin Lev director of Action for ME and former child movie star committed suicide in 1992 aged 32.
Dr Nancy Klimas, Professor of Medicine and Immunology at the University of Miami and one of the world’s foremost AIDS and ME/CFS physicians said in the New York Times, 15th October 2009:
“I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses I would rather have HIV.”
Stanford Professor Ron Davis, who used to work on the human genome, has said:
“This is a much more serious disease than many of the other things that people are worried about. It’s more common than MS, it’s more common than Parkinson’s disease, it’s more common than Aids. This is probably the last major disease that we know so little about. And it’s because of its nature that it’s been hidden. The severe patients are often just in their home being looked after by someone and no one knows they exist. But it can get very severe, people have tried to make some measures in terms of debilitating illness, it’s generally viewed as worse than many other diseases that have been ranked in terms of quality of life.’’
The most savage irony of all is that in 2012, Wessley was awarded the inaugural John Maddox prize for his “courage” in the field of ME/CFS and Gulf War Syndromes for “standing up for science”:
“The prize rewards individuals who have promoted sound science and evidence on a matter of public interest, with an emphasis on those who have faced difficulty or opposition in doing so”
For HIS courage???
His courage in the face of all those pesky patient activists who, despite Wessely’s refusal to acknowledge the biomedical evidence of more than 6000 peer-reviewed papers over the last 30 years, continue to insist their disease is real?
This breathtaking hubris has exacerbated the suffering of hundreds of thousands of people, predominantly women and children, who have been forced into CBT and GET in order to access state grants and medical insurance, despite evidence that this therapy can significantly worsen their conditions.
We continue to ‘make a fuss’.
* * *
As I couldn’t walk that far, I had to miss the Ohi Day parade. Instead I spent the weekend doing washing with Zola’s help because my arms were not up to wringing the clothes out. In between, he taught himself how to bunny hop off a step on his unicycle, which was very impressive. Sampson was bleaching and gaffer-taping the holes in the floor in an attempt to get rid of the smell of dog pee.
At dawn through church bells, I was dreaming of Hub, yearning for him. I woke up and realised that my libido had surfaced for the first time in months and I needed to seize the moment. I snuck into bed with Sampson, confident that the teenage zombie upstairs couldn’t be disturbed.
My man was keen and conscientious as ever and I was totally ready despite the pain in my joints making relaxation difficult. I moved on top and we were so nearly there together – he looked so beautiful, underneath me in the half light, just shaved last night, his face like the young him. Then suddenly I was crying – I had had so clearly a sense that this could be The Last Time. “Am I nuts? Am I torturing myself unnecessarily? Or do I genuinely know my body after all these years of living with this, and know how rapidly I’m deteriorating?
He came when I put my hands on his torso and I was happy, just to have felt well enough to try. I don’t think it was possible for my body to orgasm today, it requires too much energy and I was too weak. But at least I slept another hour cuddled together, and that felt like a gift. I woke with a GASP – the second time this week. Why do I feel like I can’t breathe enough? Is it because we have an extra being exhaling carbon dioxide into the truck? (Dog under the bed.) Or because my blood cells are getting less efficient at making oxygen?”
* * *
My aunt in Johannesburg hadn’t seen me since I was 12 and didn’t know me from a bar of soap. She was aghast to see me sleeping so much and took me to her doctor, an overconfident man of 30 who didn’t listen and proscribed Prozac. I refused to take it. I knew I wasn’t depressed – I’d been at my happiest ever when I first fell ill while travelling in 1992; in 1993 when I deteriorated I was living the life of freedom and theatre I’d dreamed of. My body just couldn’t handle the twin challenges of a malfunctioning immune system and a cold climate.
South African sunshine saved me. The energy my body didn’t squander on trying to stay warm it could put into building up my strength. Slowly but surely, I became more resilient. Being in such a fascinating place at such a fascinating time helped – I spent the first month reading an encyclopedia of South African history and the weekly Mail&Guardian. I was honoured to work processing the queues at a polling station at the first democratic elections in April 1994, getting blisters adding last-minute IFP stickers to thousands of ballot papers and explaining the difference between national and provincial votes to men in leg irons at Leeuwkop prison. I was also delighted to be taught how to speak South African by my young cousins who would not believe that ‘naartjie’ wasn’t an English word.
After a few months convalescing at my aunt’s, I moved to Cape Town to share a flat with her friend’s son in Vredehoek. I felt so much stronger at sea level, I decided I’d been leaning on my parents long enough and got a job on a stall at Greenmarket Square. In the winter months of July and August I only worked a couple of days a week around the rain, resting in between, but as summer approached this increased to three in September then four in October.
Almost overnight, I relapsed.
I couldn’t understand how I was so much worse than I’d been the previous November in England. My parents had just taken early retirement and came out to investigate, renting the flat next door. By Christmas I was hardly upright at all, in constant pain and in a haze of brain fog. I could barely hold a pen. My ever present sore throat made me feel like I was swallowing through knives. I couldn’t regulate my temperature and was drenched in sweat whenever I got cold. The effort of getting down the hallway to the toilet once made me retch. It became apparent this illness wasn’t going away anytime soon. Desperate times call for desperate measures. They decided to buy a house.
This was South Africa in early 1995. Far more people were emigrating than immigrating. My folks would never have had the balls to sell up and make such a risky financial move were it not for these circumstances. But I wasn’t going to get better in a UK climate so they felt they had no choice.
I maintain that no one – but no one – can truly understand what it’s like to have M.E. unless they’ve had it themselves or lived 24/7/365 with someone who has. Even then it’s still difficult to appreciate the capricious nature of it. My husband never knew me in my acute phase, or during the following year I spent mostly bedridden. He never saw me sleeping 20 hours a day. He never had to lift my head to drink. He never pushed me in a wheelchair.
I only met Sampson when I was 26, finally back on my feet and able to drive again. He knew I had to rest for a week after every night out together in those first few months; he learned to read my sudden pallor and try stop me from overdoing it; he could see the drastic consequences of me accidentally eating wheat or being exposed to chemicals. But he never had to feed or bath me like my parents did in 1994/5 when I was briefly one of the severely affected 25%. So he has no concept of what the risk of relapse truly means to me. Or could mean to all of us.
* * *
That morning, a geezer who’d been beavering away all weekend in the local allotment behind the truck came up to Sampson. He thought he was about to reprimand him for staying too long, but the gardener smiled and handed him a small crate of pomegranates which had blown down in last night’s storm. Greece really did feel like the best of Europe and Africa together – the wide availablity of good cheap food plus genuine human warmth and generosity. We sat and chowed through one each before folding up all the clothes and packing up to leave. The pomegranate juice felt like healing magic.