A Beginner’s Guide to ME/CFS: Part IV, Prejudice & What’s in a Name

Warning: contains a GIF

Each week, I am publishing a part in a series about ME/CFS. This is Part IV, in which I discuss the prejudices faced by ME/CFS sufferers, and its problematic name (which may or may not be as bad as crapweeds and stenchblossoms). You can find links to the other posts in the series at the bottom of this post.

Last week, I explored the limited treatment options available to ME/CFS sufferers. This week, I will explain what causes said lack of options, namely, prejudices held by the medical community and its problematic nomenclature.

 

Prejudice

“ME isn’t ‘all in the mind’, but it’s still a mystery”. “ME patients are told: Your illness is not all in the mind.” These kinds of headlines are all-too-common whenever a breakthrough in ME/CFS research occurs. Despite research confirming the biological basis of this illness, the media still operates on the default assumption that ME/CFS is a play illness, perhaps something “sufferers” affect to avoid responsibility. Sadly, this myth is not restricted to media outlets.

“You’ll never ever see another case of ME in your lifetime. Go away and forget about this illness – it’s all hysterical nonsense.”

– as told to student Charles Shepherd by an senior doctor

In the 1970s, Charles Shepherd (current ME/CFS advocate), was taught in medical school that ME/CFS was not a real disease. What horrifies me is how little has changed. Discussions with current medical students have confirmed that not only is this disease STILL not taught at medical school, but supervising doctors outright dismiss it to their students as “imagined.”

Would you believe I managed to find an image of that same doctor, instructing his medical students?

Don’t get me wrong – I know plenty of medical students and doctors whom I both admire and respect. They work incredibly hard for their patients and at their studies, and I thank them for it. However, until ME/CFS is taught properly at medical school, and respected by those senior doctors who would instruct the newest crop of medical students, I can’t see the overall attitude towards ME/CFS in the medical community changing.

These attitudes have the flow-on effect of creating GPs and specialists who are entirely dismissive of their patients’ experiences with ME/CFS. My terrible treatment at the hands of medical practitioners is hardly uncommon – 95% of patients seeking medical treatment for ME/CFS report feelings of estrangement from their doctors, and 85% of clinicians view the disease as either a partly or wholly psychiatric disorder.

When doctors brush off your debilitating disease as “women’s problems”

It is almost too easy for lazy clinicians to label ME/CFS patients as mentally unwell, rather than suffering from a complicated physical illness. Having genuine illnesses dismissed as anxiety or hysteria is a recurring issue for women in the medical system. As I outlined above, patients such as Karina Hansen, Sophia Wilson and myself have been forcibly admitted to psychiatric hospitals against our wills. Due to the undeserved popularity of the PACE trials, many in the medical profession see ME/CFS as nothing more than a psychosomatic illness, combined with a healthy dose of laziness and fear of activity. It is clear ME/CFS patients will never receive adequate treatment when these offensive and outmoded attitudes are so common.

Hayfever: innocent allergies, or a scourge on our nation? You decide.

With this lack of respect comes lack of research funding. Despite affecting a significant proportion of the population, ME/CFS has less research money directed to it than hayfever, headaches, and infertility. In the 90s, the CDC was caught diverting money allocated to ME/CFS research to other studies, and lying to Congress about it. Their further research focused entirely on psychological causes of the illness, and the organisation still refuses to countenance a name change. It is a terrible cycle – the less well known an illness is, the less research money it gets, meaning there is no education for doctors and the general public, and so the cycle continues.

“I have a wish and a dream that medical and scientific societies will apologise to their ME patients.”

– Jose Montoya, professor of medicine at the University of Stanford

What’s in a name?

In Australia, this disease is commonly referred to as chronic fatigue syndrome, or CFS. You will have realised by now how grossly inadequate and offensive this term is. For those who have had their lives ripped apart by this illness, who have been rendered bedbound, those unable to work or live independently for the rest of their lives, “chronic fatigue” is an insult. If “chronic fatigue” was all we had, would 85% of sufferers be unable to work? Would we resign ourselves to such a diminished, agonising life, if we were merely tired?

“Chronic fatigue syndrome” makes a mockery of our suffering. It encourages medical professionals to laugh at us across their desk, joking, “I’m chronically fatigued too!” It does not begin to encompass the wide range of symptoms this disease causes, from sensory disturbances, to cognitive dysfunction, blood pressure disorders, and sometimes complete failure of every single component of our bodies. It diminishes our pain and delegitimises our lived experiences. Would you call someone who has been paralysed in bed for 15 years, unable to read, watch TV or toilet themselves, “chronically fatigued”?

The term is so inaccurate, you might as well call pneumonia chronic cough syndrome, or Crohn’s disease chronic shitting syndrome. Every chronic illness is accompanied by oppressive fatigue; yet they have correct, descriptive names which do not belie the true nature of the disease. Imagine the outrage if we tried to strip other diseases of their legitimate, scientific name, and replaced them with a term that had nothing to do with the illness.

Don’t worry Harry, I’m sure Dobby just has chronic bleeding syndrome. NOT EVEN SORRY.

No, the only purpose the term “chronic fatigue syndrome” serves is to stigmatise those suffering from it. Names are laden with meaning, and act as a shorthand to understanding. What meaning does “chronic fatigue syndrome” convey? That what we experience is nothing worse than what an able-bodied person may feel at the end of a long work day, or a hard work out session. Nothing could be further from the truth.

“The name [chronic fatigue syndrome] is condescending and so grossly misleading…This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer.”

– Laura Hillenbrand 

In the 1980s, the name first proposed for the disease we know now as AIDS (acquired immune deficiency syndrome) was GRID: gay-related immune deficiency. Multiple sclerosis was once known as “hysterical paralysis”, a malaise assumed to be affected by hypochondriacs who couldn’t cope with life. The implications of these terms are obvious, and shocking to our modern sensibilities. Why, then, do we persist with the term “chronic fatigue syndrome”?

Myalgic encephalomyelitis (ME) is a term slowly replacing chronic fatigue syndrome (a mouthful, I know – it took me a long time to be able to pronounce and spell it!). ‘Myaglic’ refers to muscular symptoms such as fatigue, pain, twitching and ataxia; and ‘encephalomyelitis’ indicates symptoms of the brain, such as cognitive dysfunction, problems with speech, memory, concentration, balance, and sensory processing. In full, it means “inflammation of the brain and spinal cord”.

The differences between both terms are immediate and striking. ME not only sounds more scientific, it goes some way to actually describe the illness. It suggests symptoms and a cause. Most importantly, myalgic encephalomyelitis is a term that demands respect. It is the difference between “hysterical paralysis” and “multiple sclerosis.”

Some argue that ME is not an entirely accurate term, as there is no hard biological evidence of said inflammation in its sufferers. However, recent research indicates this name is medically justified. And even if it were not, I contend that it is still more accurate a descriptor than CFS. There are many names which have very little to do with the true nature of the illness (eg malaria means “bad air”), so I suspect this argument has less to do with scientific accuracy than trying to deny already-alienated patients legitimacy.

Despite my objections to the term CFS, I have used the combined name of ME/CFS throughout this piece. I generally say “CFS” in public. My reasons are simple: ME is not a well-known term in Australia (and other parts of the world), and I want my writings to be accessible to all who are aware of this illness. I can only hope that ME will gradually overtake CFS in naming this disease – if only for its handy use in confusing ableist pricks. I find deep satisfaction in telling those who are making light of my symptoms that I actually have a disability called myalgic encephalomyelitis. Watching them confusedly backpedal is a rare delight.

Other moves have been made in changing the nomenclature of this illness. An IOM panel (yep, the same one who provided the description in the first section) recently reviewed the available evidence and found the name “chronic fatigue syndrome” affected perceptions of the illness in sufferers, friends and family, and medical professionals. They determined that the label trivialised the seriousness of the condition and promoted misunderstanding of it symptoms and effects. So far, so good. They then proposed a new name: systemic exertion intolerance disease (SEID). To this, I say: Bull. Fucking. Shit.

I hope you’re noticing a theme in my feelings towards those who disrespect this disease.

I didn’t think it possible for a more insulting term than “chronic fatigue syndrome” to be coined, but somehow they managed it. Perhaps the fact that more than half the members on the panel had no professional expertise in ME/CFS helped. SEID is another joke name; a descriptor that describes nothing. It trivialises patients’ experiences and provides yet more fodder for those who would mock our condition (“HUR DUR I’ve got exertion intolerance too!”). “Intolerance” implies that if we avoided “exertion” (whatever that means), we would be fine; like a lactose intolerant person who eschews dairy products. And again, it fails to suggest any information about the true nature or symptoms of the disease.

My inevitable response when someone says “I have exertion intolerance too”

Not surprisingly, this name is unpopular among the ME/CFS community. A follow-up survey of ME/CFS patients found 70% believed the new name lacked legitimacy, with most respondents concerned that the name suggests the disease is caused by something other than a physiological disease process (such as laziness, fatigue, deconditioning or psychological problems).* Half of respondents felt angry about the new name (for good reason!). A psychologist who has worked with ME/CFS for many years published some of his patients’ comments regarding the name change:

“This new name is an abomination!”

“Absolutely outrageous and intolerable!”

“I find it highly offensive and misleading.”

“It is pathetic, degrading and demeaning.”

“It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.”

“(It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’”

“The word ‘exertion,’ to most people, means something substantial, like lifting something very heavy or running a marathon – not something trivial, like lifting a fork to your mouth or making your way across the hall to the bathroom. Since avoiding substantial exertion is not very difficult, the likelihood that people who are not already knowledgeable will underestimate the challenges of having this disease based on this name seems to me extremely high.”

We clearly have a long way to go before there is any respect for the horrific nature of this disease.

Thanks for reading this week’s segment, folks. Next week, I’ll wrap it up with a brief overview of current research into ME/CFS and some suggestions of how to proceed if you or a friend are newly diagnosed.

*Other names proved more popular: myalgic encephalomyelitis was the clear front-runner, receiving almost as many votes as all the other names combined. Other popular names were Neuro Endocrine Immune Disease (NEID) and Ramsay’s Disease (after Dr Melvin Ramsay, one of the first ME/CFS researchers). Nightingale’s Disease (after Florence Nightingale, who is thought to have had the disease, possibly apocryphally) and myalgic encephalopathy were other suggested names.

Thanks for reading my Beginner’s Guide to ME/CFS! You can find the other posts here:

Part I, Intro

Part II, Prognosis, Severity and Scales

Part III, “Treatment”

Part IV, Prejudice & What’s in a Name

Part V, Research & Conclusion