Our Story Must Be Told Too

OUR STORY MUST BE TOLD TOO

Greg Crowhurst, January 2024

I am unsettled, as many are, by the terrible injustice experienced by the Post Office staff and their long fight for justice, mostly invisible and unheard, for two decades.

As I watched ITV’s “Mr Bates versus the Post Office” it awoke all the pain and despair of the decades of denial and neglect we have suffered and continue to suffer, since my wife was diagnosed with Myalgic Encephalomyelitis (ME).

Just over three decades ago, newly married, my wife’s health deteriorated so badly that she rapidly became house and bed bound, paralysed repeatedly, in unimaginable agony.

Yet rather than appropriate medical support, validation, full investigation and treatment, doctors “believed” there was nothing much the matter with her, leaving us for decades to get on with the ruins of our life, desperately moving across the country to seek medical help and understanding that was just not there.

The losses, we and numerous others have experienced, are so many they would be impossible to include here.

The lack of respect and the mistreatment that my wife has endured in the past has been devastating, however it is par for the course to be left in limbo land for decades, without answers or treatments.

One expects proper, adequate medical information, support and treatment from the NHS. Sadly the opposite is true for people labelled with the term now used, “ME/CFS”, more often misdescribed as CFS/ME or just CFS. The ‘F’ stands for fatigue and that fatigue was interpreted as having little to no basis in terms of physiology.

Initially Myalgic Encephalomyelitis, which can occur in epidemic form, was taken seriously, by the UK Government, that is until psychiatry became involved. Their doctrine, which neatly fitted the agenda of the medical insurance industry, that ME is a form of “hysteria” due to “misguided thinking” rapidly gained acceptance as medical orthodoxy, even though there was not a single shred of evidence that ME, classified in 1969 by the World Health Organisation as a physical disease, was a mental health issue.

(I have detailed the psychiatric involvement in ME here : https://www.stonebird.co.uk/emptyair/sj.pdf)

Hence the refusal of my wife’s GP, thirty years ago, to believe she was physically ill. Oh, if only he had! Our life would have been very different. This, like the experience of the Post Office employees, is hard to fathom and understand.

Ignoring the fact that people with ME are as functionally impaired as those suffering from diabetes, heart failure and kidney disease and as severely disabled as those with late-stage AIDS, Multiple Sclerosis or a those undergoing chemotherapy, psychiatry attempted for more than thirty years to deny the symptoms and pathology by :

1.Trying to bury the disease under a meaningless classification of “ fatigue”. The name was even changed to the almost meaningless label Chronic Fatigue Syndrome ( CFS. ) The specific links to Polio and an enterovirus were also buried with this wider misinterpretation and misdirection.

2. Aggressively seeking to classify those who have an ME Diagnosis as mentally ill, interpreted as victims of misguided thinking or hysteria.

3. Burying the genuine ME patient in a sea of poorly diagnosed diseases or mental health conditions.

4. Forcibly removing patients, such as Sophia Mirza, the first person for whom ME was recorded as an official cause of death, against their will, from their homes and consigning them to psychiatric institutions with tragic and fatal consequences or labelling parents who cared for their sick children as having Munchausen Syndrome By Proxy in order to discredit and blame them for making or keeping their children ill.

5. Encouraging the proscription of tests that might help identify physical illness, leaving patients misinterpreted, mistreated, misrepresented, misunderstood, neglected or harmed, with no hope of appropriate biomedical pathway or hope of safe diagnosis and medical respect for decades once labelled.

After decades of struggle by patients, the psychiatric lobby has at last been rightly discredited to some extent, but not enough. Their influence over decades is still palpable in primary and secondary care.

There is still a lack of accurate definition and distinction between genuine patients with Myalgic Encephalomyelitis and other patients with fatigue based illnesses or rare diseases not adequately tested for or diagnosed accurately. So how can any research ever be accurate or successful?

There is still no real hope of safe treatment pathways.

There is still an alarming lack of awareness, among professionals, of the seriousness of the disease.

There is still not an appropriate understanding of ME’s pathology and its specific individual system dysfunction.

So patients are still at risk of mistreatment, misinterpretation and serious harm and neglect.

No one has been held to account for the decades of needless suffering, the countless wrecked lives, the many deaths, the persecution, the despair, the suicides, the lies, the deliberate ignorance, the lack of hope of medical treatment, engendered by psychiatry.

As a full time unpaid carer, with a profoundly disabled wife, I fought as hard as I could. I represented the most severely ill in Parliament. I learned how to code, so that I could launch Stonebird in 2006, a website dedicated to Severe ME, I wrote books on how to care for the most severely affected. In 2015 I was awarded third place Nurse of the Year, for my services to ME advocacy.

My focus, now we are “retired”, has had to shift from advocacy to trying to maintain some semblance of a life together, even if I have little idea how to get through what we have to get through every moment of every day, the symptom onslaught is so terrible and never ending…..

‘Mr Bates Versus the post Office’ was unbearably difficult to watch, yet ultimately inspiring, for it shows how truth and the strength of the human spirit will prevail, against all the odds; we have always held onto that belief.

How on earth did we ever manage to fight back at all?

Unlike the Post Office Workers, the most ill, confined to darkened rooms, could not possibly travel to a village hall in the middle of England and there form a campaign group. They are far too weak and ill to leave their beds and interact in any remotely normal way with the world. The internet, for those that can use it, has been an invaluable source of connection, but mostly the severely affected lead invisible, isolated lives for decades on end.

There are many untold David/Goliath stories. Despite requiring around the clock care and being confined to his bedroom in Australia, Alem Matthees, for example, managed to launch a successful legal complaint in 2016 that paved the way for the recent NICE Guideline and its breakthrough rejection of Graded Exercise Therapy, the key psychiatric intervention.

But patients still suffer without any suitable treatment, still turn, in desperation to clinicians who do not know how to help them and still die horrendously painful deaths.

How do you compare one suffering with another? You cannot and I am not.

What I do know is that people with ME have surely endured one of the greatest medical scandals ever. Recognition of this is long overdue.

All I can say is that as I watched “Mr Bates versus the Post Office” from the wreckage of our broken dreams and shattered hopes, my heart broke all over again. Our story must be told too.