miscellanea

This page features various writing by Robert McMullen which is not included in stranger and stranger:.

Links writing on other pages on this site:

Perceptions of Myalgic Encephalomyelitis

“That is just the way with some people. They get down on a thing
when they don’t know nothing about it.”

Mark Twain, The Adventures of Huckleberry Finn

One of my anxieties about being admitted to hospital in 1999 was the prospect of meeting other people who were diagnosed with ME. I had been unwell for more than seven years but I had only ever known or spoken to one person with the same diagnosis, and he was significantly less unwell than me.

In truth, I was probably a bit prejudiced. I was sure there must be other people who had the same illness as me, and that there were people with the same diagnosis but with different symptoms, both in nature and severity, but I also suspected that there were some, possibly many, for whom the diagnosis was convenient in some way. A friend once told me that I was different to the other people he had know with ME because it didn’t suit me, and I knew what he meant.

Before I was ill, I knew very little about ME. I was aware of the scepticism that surrounded it, which, combined with my ignorance, made me fairly cynical about those who “claimed” to have it. It had never occurred to me then that there might be people for whom this diagnosis – given to them – was unwelcome, despised or even denied.

When I was first unwell, before I was diagnosed, I detected no hostility or scepticism towards me. Mostly the doctors seemed sympathetic, concerned and curious to understand what was causing my symptoms. But once I was diagnosed and presented as a patient who had been diagnosed with ME I felt as though I was treated quite differently; as though I was someone I was not. Symptoms and character traits would be attributed to me that I have never had. I read articles by doctors who had never met me, denouncing me by association, as though I had diagnosed myself in order to join some sort of deluded cult of malingering hypochondriacs.

I couldn’t believe that any signatory to the Hippocratic Oath could be so cruel or ignorant to write with such venom without very good reason. My inclination was therefore to believe that I must be different to most other people who were diagnosed with ME, and that they, not the doctors, were the cause of the hostility I encountered.

For years I desperately sought an alternative diagnosis but none was offered. A neurologist once told me to have nothing to do with any of the ME organisations because most people who say they have ME are “just depressed”. But he assured me that I had an “organic illness” and that he would “get to the bottom of it”. His words were comforting to me at the time but the succour was short lived. The only alternative diagnosis he offered was that I had some sort of post-viral syndrome, which was even less useful than being told I that I had ME. In being discharged from his care, I was given the confident assurance that I would get better. Twenty two years later I am still waiting. And if he has not retired, he may well still be offering the same confident assurances to patients like me, oblivious to the outcomes of those he discharges.

Another doctor was not only unhelpful but openly hostile. Approaching my twenty-first birthday, I was at a very low ebb; anxious, desperate and tormented by discomfort and frustration. I felt as though my life was running away from me and nobody could tell me why. The doctor in question asked me nothing about my symptoms or history before telling me that people like me “just need a bit of a kick”.

Despite my state of health and vulnerability I was much stronger then; more sure of who I was and where I would have been; more willing to be confrontational.

“FOR FUCK’S SAKE!” I shouted as I stood up in rage, before checking myself and regaining a modicum of composure.

“You see?” he taunted, “You seem fine now,” as though he had been vindicated by my reaction.

Foolishly, I tried to reason with him. I even apologised! But it was as pointless as trying to reason with the judge while standing in the dock at a Salem witch trial. I was guilty as charged, and anything I said or did could only reaffirm the certainty of that verdict.

In an ideal world I would have liked to report him to the General Medical Council, but even if I had been well enough to embark on such action I knew that it would have been futile and probably counterproductive – like writing to Senator McCarthy to complain about having been falsely accused of being a communist sympathiser. Unbeknown to my tormentor, I paid very heavily for my exertion that day, and in some respects I am still paying for it now. Unsurprisingly, I never saw him again. My guess would be that very few ME patients ever saw him more than once. For such doctors ME poses no problem. They are free to preach hatred in the press and elsewhere with a clear conscience, blissfully unaware of the suffering they ignore and compound so coldly.

Around about the same time that I saw that doctor, I read an article about ME in The Daily Telegraph1, written by another GP. It made me feel so angry and fearful that I still think about it frequently now, more than two decades later. As part of my research for this essay I dug out the cutting that I had filed. Reading it again was even more traumatic than it had been the first time. Back then I was fearful of what might lie ahead. I was young, full of spirit and ambition, crippled by an illness that nobody seemed to understand, angry and scared. Now I was not only taken back to that time but also to the realisation of so much that I feared that day – all the years of pain, unbearable discomfort, debility and neglect. After more than twenty years I still felt as though I was being abused by someone who has never met me and knows nothing about me; someone who is paid to do no harm.

The man in the bed opposite me was probably younger than I am now but he seemed old to me then, with little hair and the essence of middle-age. He appeared to be remarkably well. While I lay in or on my bed under a thick duvet, wrapped in multiple layers and reliant on the nurses to push me to the bathroom, he seemed very comfortable strolling about the ward, watching television in the common room, or sitting next to his bed listening to music through giant headphones. Whereas I had struggled to cope with the exertion of being driven to hospital and wheeled into the ward by my parents, he had made his own way there and walked in. The only discomfort that I was able to discern from his manner was that of boredom.

It was difficult when he tried to engage me in conversation because most of the time I wasn’t feeling well enough to talk but I didn’t want to seem rude or unfriendly. He asked me if I would mind if he put some music on the radio through the loudspeaker. I was exceedingly sensitive to noise and the thought of being subjected to whatever music he was listening to was excruciating, but I didn’t want to have to explain that or to be perceived as being awkward or anti-social, so I told him that I didn’t think it was allowed, which was true.

It was mid-morning and he was sitting on his bed in his striped pyjamas and dressing gown, propped up against his pillows. His legs were straight out in front of him and crossed, and his hands were interlocked behind his head with his elbows pointing outwards in a posture of conspicuous relaxation.

“I don’t know about you,” he volunteered, “but I was quite relieved to get my diagnosis. I’d had enough of the rat race and was pleased to get out of it.”

Although I was surprised by his honesty, his words didn’t contradict any of the vague impressions I had formed of him to that point.

I told him that no, I was not in any way pleased to be unwell, and that my diagnosis was almost as unwelcome as the illness itself. My life had been good and I was desperate to get back to it as soon as I could. There was so much that I wanted to do, and every day I felt that I was missing out on something – quite apart from the tranquillity of being free from pain and feeling in any way comfortable for any part of any day. I didn’t say quite as much as that but I was thinking it, and he clearly understood.

“You want to hang on to that,” he advised, sagely.

I wasn’t sure if he was expressing regret that he had lost his grip, or if he had just not been lucky enough to have had anything to hold on to, but he was right. I was tormented with frustration but also fearful of losing the desire which stoked it. To live in such pain and discomfort without longing was a void into which I feared even to contemplate falling. I had been holding on for seven long years, silently screaming for someone to haul me back to safety.

On the surface, the contrast in our wellbeing appeared to be as stark as the difference in our mindsets. Beyond an apparent lack of purpose, the man’s suffering was not obvious to me from our brief interaction. And yet, I did not doubt him for one moment.

Although most of the beds in the ward were reserved for ME patients, there were generally at least one or two that were occupied by patients with different neurological diagnoses. Had the man speaking to me been diagnosed with ME I might have judged him differently, but when he had introduced himself he had told me that he had MS.

Multiple Sclerosis is a chronic, debilitating disease of the central nervous system which can now be accurately diagnosed. Symptoms are diverse and can vary significantly between people. They may come and go, or they may become permanent or get progressively worse. Until well into the twentieth century MS was thought to be a predominantly, or exclusively, male disease. Most women with MS were dismissed as suffering from "female hysteria", but it is now known that MS affects at least twice as many women as men.

Theories about the cause of MS have included the suggestion that it is caused by stress related to oedipal fixations. Thankfully, all such nonsense has long since been discredited by empirical research2, but sadly the history of medicine is littered with similar examples. Perhaps the most poignant is that of New York psychiatrist Casper Schmidt who died of an AIDS related illness ten years after publishing a paper in which he dismissed AIDS as being the product of “epidemic hysteria”3.

We are inclined to look back in horror at the abuses of the past as though they could not happen now, but sometimes it seems that all we learn from the history of medicine is that we never learn from the history of medicine. When faced with ignorance our instincts and reactions today are often not so different from those of our ancient ancestors whose base and cruel actions we now mock as though they were alien to our more civilised mindsets.

If my admission to hospital achieved anything for me it was to help to liberate me from my prejudice. None of us on the ward were the same. We were all very different individuals with a diversity of symptoms and varying degrees of disability. I don’t know if we all had different manifestations of the same illness or different illnesses. But what was beyond doubt was that we were all unwell, we were all desperate for answers and effective treatments, and we were all deeply frustrated by our pain, discomfort and incapacity, and the lack of understanding of what was wrong with us.

Unlike most doctors, journalists and others who express opinions about ME, I had the privilege of living in the same room as these people for long enough for me to get to know them a bit and to observe the extent to which they were affected by their illnesses, which was far greater than would have been apparent from a five minute appointment – not that everybody was well enough to attend a surgery. Contrary to my fears, and the ill-informed commentary I had read, the other patients were generally very reticent to discuss their symptoms and mostly preferred to talk about anything other than their health.

I became close friends with one person I met in hospital. We stay in touch by writing, but because we are both still unwell and live in different parts of the country we have not been able to see each other again since we were discharged. Knowing her, and knowing that she understands in a way that someone who has not endured a similar experience cannot, has given me strength and helped me to feel less alone.

Remembering my own prejudice, I try not to hate those who have doubted, ridiculed or mistreated me. But I do fear their ignorance and their influence. It seems that attitudes may be changing as the evidence from biomedical research slowly starts to accumulate4 but a recent encounter with a doctor I had not seen before confirmed to me that there is still some way to go. And the ignorance is not only confined to the causes and pathophysiology of the illness or illnesses. Many doctors still seem to have little or no understanding of how patients feel or how the illness affects their lives.

I do not mean to be critical of all or even most doctors. Some have been very kind to me, and I am exceedingly grateful for their care. Another new doctor I saw recently was so kind and helpful that I almost cried from relief. For such doctors, the burden of caring for people for whom they are able to do so little to help must be very great, and I do not underestimate the difficulty of their task. But such care should be the expectation, not a welcome surprise.

Lying on my bed waiting to be collected by my parents on the day before the last Christmas Eve of the Millennium, the ward was nearly empty and there was an end of term feeling about the place. The beautiful young woman diagonally opposite me with the large, freshly-stitched scar on her shaven head, who appeared to have made a point of undressing with the curtain only partially drawn so as to expose herself me, had left. The kind, elderly woman in the bed next to me with advanced Parkinson’s Disease, whose fingernails I had cut because her hands were not steady enough to do it herself, had been discharged. The middle-aged man with Multiple Sclerosis was no longer there, and the other beds, as far as I recall, were empty.

Unlike my previous admission (to a different hospital) where I had been humiliated and ridiculed, the hospital staff here were generally kind and helpful. Physically, I was feeling significantly worse than I had when I arrived but I also felt that most of the staff had a reasonably good understanding of how I was and one or two had even got to know a little about me as a person beyond my diagnosis.

Preparing a bed with a colleague for the next arrival, one of the nurses I did not recall having seen before saw me alone at the far end of the ward and asked me how I had got on during my stay. In keeping with the doctrine to which I had been subjected, I tried to say something positive, although I chose my words carefully – not wanting to lie or to give the impression that my admission had been any more helpful than it had been. Although the nurse’s reply suggested a similar obedience to authority, it was perhaps more revealing for the fact that it did not appear to have been calculated so carefully. She seemed pleased to hear that I had not been mistreated. “You see, in here,” she explained, “we treat ME patients as if they’re just the same as any other patients.”

That she would not have spoken those words to a patient with any other diagnosis did not seem to have occurred to her. And I was left wondering to what extent I might have been humoured.

All patients were equal, it seemed, but some patients were more equal than others.

Robert McMullen, September 2016

If you would like to support me by make a donation to ME Research UK please use the following link: www.justgiving.com/Rob40

For more information about how you can support people diagnosed with ME, please read How you can help.

Please note, when I wrote the essay above, I was not aware of the controversies surrounding the PACE trial, MEGA, FITNET and MAGENTA. I hope that I may be able to write about these issues in due course. In the meantime, please see the following links for more information:

Trial by Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second instalment), by David Tuller.

Trial by Error, continued: The new FITNET trial for kids, by David Tuller.

Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

References:

1 Dr Rodney Silver. So don’t argue with ME, The Daily Telegraph, March 30, 1994

2. Richman et al. Health Care for Women International, 21:173–185, 2000

3. Casper Schmidt. Group-Fantasy origins of AIDS, Journal of Psychohistory, Summer 1984.

4. Examples of published biomedical ME research:

i) Robert K. Naviauxa, Jane C. Naviauxa, Kefeng Lia, Taylor Bright, William A. Alaynick, Lin Wang, Asha Baxterf, Neil Nathanf, Wayne Andersonf, and Eric Gordonf. Metabolic Features of Chronic Fatigue Syndrome PNAS, 2016: doi.org/10.1073/pnas.1607571113.

ii) Ludovic Giloteaux, Julia K. Goodrich, William A. Walters, Susan M. Levine, Ruth E. Ley, Maureen R. Hanson. Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome. Microbiome, 2016: doi.org/10.1186/s40168-016-0171-4.

iii) Mady Hornig, Jose G. Montoya, Nancy G. Klima, Susan Levine, Donna Flesenstein, Lucinda Bateman, Lucinda Bateman, Daniel L. Petereson, C. Gunnar Gottschalk, Andrew F Schultz, Xiaiyu Che, Meredith L. Eddy, Anthony L. Komaroff, W. Ian Lipkin. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Science Advances, 27 Feb 2015 : E1400121: advances.sciencemag.org/content/1/1/e1400121.

Not for a dog

Amid the chaos of a broken dream
I chanced upon a soul so pure and true
That in your wake such troubled days did seem
More tempered, calm and drawn of lighter hue.
You are the snow that shines amid the gloom,
Church bells that on a balmy evening ring,
A honeybee that feasts upon a bloom,
The nightingale with whom, alone, I sing.
Not one to show with wit or toe the line,
While others feign but falter to perceive,
With playfulness and rebel looks divine
You feigned the fool but failed to deceive.
For in your heart with candid look I found
A love – not for a dog but love unbound.

Robert McMullen, 2014

Ignorance and the value of writing

When I was first diagnosed with ME, some time in 1992/93, it was not uncommon for people who learnt of my diagnosis to comment that I was at least fortunate that people now understood the illness; that I would not be subjected to the sort of ridicule, disbelief and abuse that people had suffered in the past. Ironically, twenty years later people still say exactly that same thing. Except, the ignorant past they refer to now was still the future in 1992.

The truth is that very little has changed. We are all still ignorant in the sense that we do not know what the diagnosis means physiologically. A little more is understood scientifically – there are clues and suggestions as to what may be going on – but there is still no objective diagnostic test, there is no cure and there are no effective treatments.

Of course, when people say that it is “understood” they do not mean pathophysiologically. They mean it in the sense that it is accepted that the illness is “real”; that they understand that we are suffering and deserving of sympathy rather than scorn.

Sadly, even using this broader sense, I don’t think it would be much more accurate to say that “people understand” now than they did in 1992/93. Admittedly the tabloid press have (mostly) stopped referring to "Yuppie Flu", but not entirely. There are fewer offensive articles in the press but it is still never a surprise to see them.

Some people, especially people who know me and know what I have been through, are very kind and sympathetic. Many have been hugely supportive, particularly in helping to raise money for biomedical research, while some have made great sacrifices for which I will be forever indebted. Others, particularly people who don’t know me, are still incredibly ignorant and cruel. Occasionally, even people who do know me make comments which anger and wound me to a depth I could never previously have imagined; hurt being of a different order when inflicted unintentionally.

One of the very few good pieces of advice I have been given since I’ve been unwell was from my grandmother, who herself experienced a good deal of ill-health during her life. I remember the time, nearly twenty years ago, when she sat on my bed and told me that whatever fate befell me, I mustn’t become bitter, because bitterness is self-destructive. It eats away at you from the inside and can ultimate do more harm than the original cause of your suffering. Every day since, I have strived to heed her advice. I would not say that I have always been successful but I have battled the urge unceasingly, constantly straining to remain positive and find a way of seeing things from a viewpoint which makes them easier to accept without losing my faith in humanity and everything that is good about the world we live in. Sometimes that is no more profound than simply accepting that "shit happens" because in a world where free will exists suffering is not only inevitable but necessary.

However, that is not to say that suffering is either desirable or irreducible, just as being positive does not mean keeping quiet about negative experiences. Indeed, writing about my experience is one of the ways I try to remain positive. If people are cruel because they are ignorant then stoic silence will achieve nothing. Moreover, if research is stymied due to ignorance of suffering then we all have a duty to speak out, because ultimately it is only through biomedical research and scientific understanding that our suffering can be ended.

Then, and only then, will it be true to say that we are fortunate that people now understand. Until that day arrives we are all condemned to ignorance; albeit some more ignorant than others.

In the meantime I shall continue to try to raise awareness and understanding by writing about my experience. I shall continue to raise money for biomedical research, and I shall continue to lobby the Government for an increase in funds allocated to the MRC for biomedical ME research.

Robert McMullen, October 2012

How you can help

Whether you are unwell, know someone who is unwell or have just read about ME and would like to help, here are some simple suggestions about how you can help:

Invalid

I’m that weird guy you heard about; yeah, that’s me.
I’m the one you read about, the one you never see.

Oh, you know me – you think you do
– The boy who lost his pride.
The boy who’s sick – or thinks he is
– Now seldom strays outside.

“It sounds all right to me you know,
This lazy life he leads;
His stoic parents serve him well,
Bring everything he needs.

He says he’s ill. He says it hurts.
He says he’d rather die.
There’s nothing wrong. He’s made it up,
Alas, we know not why.”

It’s not like that. You’ve got it wrong.
I’m desperate, I swear!
To live like this, without a life,
And you don’t seem to care.

And then you seemed to change your tack,
To sing a different song.
It’s not like that; I don’t need love,
I need to know what’s wrong.

Concern is nice - And sympathy?
A luxury, I’m sure.
But what I need, I really need,
Is just a bloody cure!

You must believe, believe in me; believe in what I say.
I have no faith in God above, but every night I pray.

Robert McMullen, 1999

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