I had a different plan for this blog. But that was before.
Before NICE (the UK’s National Institute for Health and Care Excellence) folded to pressure from Very Important Psychologists at the Royal Colleges on 17th August and halted publication of their new treatment guidelines for ME/CFS, at the legal end of a three year process, literally at the eleventh hour.
Before, I finally made it to Barcelona in mid-September for brain and spine scans I’ve been needing since 2018 that are impossible to obtain in South Africa.
Before I knew for sure.
‘Pause’ has taken on a whole new meaning since then.
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30 years ago I got sick with glandular fever. I never got over it. ‘Post-viral fatigue syndrome’ sounds mild, doesn’t it? It doesn’t encompass the life-wrecking balls-up that is Post Exertional Malaise.
30 years ago, ‘psychologicalisation’ of chronic illness was at the peak of its power. My GP was reluctant to give me a diagnosis; after 6 months of 20-something me turning up with exhaustion and diarrhoea and anaemia and nausea and bloating and arthritic pain and spasms and sore throat and light sensitivity and hair-falling-out-in-clumps, the words ‘Myalgic Encephalomyelitis’ seemed dragged from her against her will.
30 years ago, there was no internet to share our stories, our survival strategies, the history of our disease. But now, with the biomedical research evidence overwhelming, the arguments for Graded Exercise Therapy and Cognitive Behavioural Therapy thoroughly discredited and Long Covid numbers rocketing, it’s only the Very Important Psychologists who continue to suffer from ‘false illness beliefs’: that is, their false beliefs that post-viral illness is not cripplingly real.
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Let us pause for a moment to consider the impact of the psychosocial paradigm in the intervening years.
The dehumanising treatment that Sophia Mirza was subjected to before her early death in 2005 (that I wrote about in Sick Consciousness part 1) is far from unusual. Katrina Hansen, a young Danish woman featured in the ME documentary Unrest, was hospitalised against her will for three years from 2013. At the end of 2020, another international campaign had to be launched to draw attention to the plight of Holger Klintenberg, a 35-year-old Swede ill since the age of 19, who was under threat of being forced into institutionalised psychiatric care.
In the 1980s, Ean Proctor, a British boy whose ME became so severe that he was mute and immobile at the age of 12, was taken from his home and put in a psychiatric hospital for nearly 6 months. His mother said “They thought we were making him ill. Ean was in a wheelchair, he couldn’t speak, his hands were in tight fists. He was all skin and bones—he looked like something out of Belsen. How could he do anything?” According to an interview with Ean conducted by Dr Anne Macintyre for a Channel 4 documentary in 1993 (from 19.00), he was subject to inhumane treatments including being left to soil himself and to sink in a swimming pool to try and snap him out of his ‘psychological illness’.
Yet it’s often the parents of sick children who are being accused of child abuse, not the consultant psychologists. Jane Colby of the Tymes Trust, who has been monitoring children with ME in UK since the 1990s, said in 2019 that the number of families who have been investigated had reached 232, with over a hundred cases alone since 2014.
Please watch this short video of Dionne Joseph from last year, describing her battle to keep her severely ill teenage daughter Jehan ‘Gigi’ Joseph-Garrison from being forcibly removed to a psych ward and made to engage in harmful exercise therapy, despite Dionne being an experienced clinical psychologist herself.
Please be witness to the picture of Gigi in hospital aged 18 weighing 36kg included with her permission in this article.
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Today Monday 18th October, 2 months since the new treatment guidelines were “paused”, NICE is hosting a Roundtable meeting to “discuss concerns”. It will be presided over by an “independent chair” Dame Carol Black, initiator of the ‘Fit for Work‘ government policy designed to deny benefits to the invisibly ill and a proponent of exercise as the answer to all things.
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The Pause tattoo I got back in August looked a bit rough around the edges – like the guy who did it. While I was checking out his biker’s beard, faded tats and silvered teeth, he was looking askance at my shades and ear defenders. He must have thought I was a right wimp. But when he got going with his needle gun, I started laughing softly – why had I ever worried the process might be too much for me? This wasn’t even 0.25 out of 10 on my pain gauge!
The chronically SICK are living on a different scale of suffering to the Well. The Well can’t even begin to imagine the scope of ours.
The Society for the Inclusion of Chronic Knowledge has a lot to share with the world.
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A month ago, my daughter escorted me in my wheelchair from my folks’ place in Malaga on the plane to Barcelona to see one of only 4 specialists in the world in Cranical Cervical Instability (the other 3 are in the US). Due to the pandemic, I had been waiting 2 years to get to Spain from South Africa to have these very expensive upright and supine brain and spine scans.
I was diagnosed with CCI and Atlantoaxial Instability, between the C1 and C2 vertebrae. The scans also clearly showed that cervical settling on my ‘loose’ spine is compressing my dominant jugular vein. As a result, deoxygenated blood and cerebral spinal fluid are not being drained from my brain, effectively drowning it in its own shit!
It precisely explains the increased feeling of brain fog I’ve had since my second concussion en route Africa Clockwise in 2018, as if my head was being held underwater.
In recent years, CCI/AAI has been shown to be affecting an increasing number of ME patients. For a significant number of us, it seems ME is a relapsing/remitting progressive disease like MS, with a post-viral collagen breakdown causing blood oxygen starvation to our muscles and brain, hobbling our cellular energy metabolism. For me, after three decades, the severely disabling neurological, endocrine, dysautonomic and gastro effects of this are being compounded by the fact that ligaments all over my body are collapsing; in the last few years I’ve had problems with my hips and ankles as well as my neck. The surgeon believes I also have the connective tissue disease EDS as the MRI also revealed a Tarlov cyst at the base of my spine.
My personal theory is that the overlapping chronic illness cluster of ME, Fibromyalgia, EDS, POTS, MCAS and other co-morbidities may all end up under the umbrella of one wide-ranging diagnosis (like ‘cancer’) once adequate research is undertaken. The escalating prevalence of Long Covid – a very similar debilitating post-viral condition – may be the thing that finally unlocks the necessary funding and focus.
It was life-changing to get a physiological validation of my symptoms after all these years. Not least because since wearing the recommended rigid cervical collar (that lifts my head and allows my jugular to drain) my PEM has subsided so considerably that my capacity has been boosted by almost 50%. I can now walk more than 200m without having to stop and lie down, and stand up long enough to cook.
My brain can breathe.
I can think.
I can articulate my incandescent anger.
Anger on behalf of millions of people languishing in completely avoidable purgatory because of the hubris of a handful of arrogant men. Without their bullying interventions dominating the field and diverting decades of research, we could have had medication to manage this disease by now, maybe something as simple as insulin for diabetes.
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My life has been on Pause for long enough. NICE has no right to pause these guidelines and extend the suffering of people with ME. To allow more innocents to exercise their way into wheelchairs.
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My Pause tattoo is a bit skew, like a door stamp for a nightclub, hastily stamped inside your wrist as you shuffle in on a sweaty Friday night. It makes me think of all the youngsters who queued up in lines outside clubs cross Britain all through the summer, jam-packed against each other, not knowing which of them was going to be randomly selected for completely avoidable permanent sickness, thanks to their callously negligent government.
Boris Johnson has been playing Russian roulette with Gen Z – letting the Delta variant of the virus run amok among them, gambling on herd immunity ahead of winter. He’s knowingly condemned at least 10% of young COVID-19 victims to long-term disability, and potentially 25% of that Long Covid cohort to Severe ME.
Many just children like Ean.
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The poorly inked tattoo brings to my mind the carelessly carved identification numbers on the left forearms of Auschwitz camp survivors. They had no agency when fate marked them out for cruel and brutal treatment.
A couple of years ago, there was controversy over whether the empty shoes of ME Action’s Millions Missing protests showed gross insensitivity to Holocaust survivors and their families, triggering memories of Nazi gas chambers, drawing inappropriate parallels. Of course this is not genocide; chronically sick people are not being deliberately rounded up and killed.
But who are we to judge? Surely only the Very Severe themselves are qualified to quantify their suffering in comparison to such heinous persecution? Are there fates worse than death?
Whitney Dafoe’s recent testimony gives us a rare glimpse into their existence:
Have people with ME not been vilified to the point of dehumanisation? Are they not victims of a hate crime, a big lie proposed by the psychiatrists who commandeered the field in 1970 and maintained by well-funded propaganda ever since? Are not the most severe, the most vulnerable 25% – many youth and children – being treated the most cruelly? Even, as Dionne Joseph described, “almost tortured” by being made to do exercise in hospital?
Are they not being deliberately disappeared into the category of ‘Medically Unexplained Symptoms’ while basic research funding is denied and the world looks another way? Until people with ME and Long Covid are counted in official statistics, their suffering won’t count either.
There are millions way too ill to sit up or speak, let alone stand up and protest. The Well can’t see the Sick in our darkened rooms. We are beneath your radar, and half the time brain fog makes us barely conscious of ourselves.
It is time to reframe severe chronic illness as a human rights issue. As prisoners of sub-conscience, condemned to solitary confinement without any prospect of parole, we must appeal to Amnesty International to challenge government and medical industry abuse of people living in post-viral purgatory.
Silence = Living Death