The Medical Ignorance that Surrounds ME/CFS

We are 19 years on now from the year I was diagnosed with ME/CFS. The year a GP said to me in the most dismissive of voices ‘you need an exercise bike’ during an appointment that I’d been carried into by my step father as I couldn’t walk or hold my own body up.

During the years that I have lived with ME/CFS, this illness has seen me at varying levels. One end of the spectrum I have been bedridden and completely unable to care for myself. A stage where I remember wondering how it was possible to feel so unwell and still be alive, every moment was excruciating and I literally felt trapped in my own body. This time saw me unable to feed myself, hold a conversation or sit up unaided.

I have also been at higher functioning levels. Stages were I can live a fuller life. Perhaps able to take a gentle stroll in the countryside or meet a friend for a coffee, as long as I pace myself and take care not to over do it. At this level I can often appear perfectly okay to an outsider, especially with my hair and make up done, but beneath the surface symptoms and fatigue are always present and the slightest over exertion beyond my boundaries will see me relapse back into being unable to function once again.

ME/CFS ruins lives. Robs people of their dreams. Stops people living the life they yearn for. Yet, there is still a huge misunderstanding of the severe physical and psychological implications that it imposes on peoples lives.

Medical Ignorance

Ignorance in society is sadly still an issue when it comes to ME/CFS, but even more worryingly, ignorance in the medical profession is also commonplace.

We are taught as children, that when you get sick, you go to the Doctor and they make you better, but sadly in reality, this isn’t always the case. Although western medicine has its place and works miracles for certain illnesses or physical injury to the body, there are huge gaps when it comes to treating chronic illnesses such as ME/CFS. What is worse than the lack of treatment, for me, is the ignorance. The lack of care and support. The lack of research and funding.

I rarely visit my GP for anything to do with this illness, because I am more than aware there is literally, nothing that can be offered other than a course of CBT or Graded Exercise Therapy (both of which I have of course tried).

A few months ago during an appointment with my GP for something unrelated, I mentioned I had ME/CFS (he was unaware despite my medical records being in front of him) and his answer was ‘oh yes, I know what that is, I read a book on it once’. One Book!

This is what we are dealing with in 2019. GP’s that sit proudly announcing that they have read one book on ME/CFS.

His following comment was ‘you need to do graded exercise’. I was so angry. I usually remain calm, having just about heard it all throughout the years. But in this moment, I felt a surge of emotion bubbling up, because Nineteen years on, hundreds of books, research, therapies, doctors and experimental treatments later, I remain with this condition and am being told by a medical professional that I need graded exercise, as if it’s some kind of magical cure that has bypassed my awareness.

When it comes to Doctors, the absolute best you will get, is someone who empathises and understands what ME/CFS is. Someone who listens to you, respects you, and humbly says ‘I wish we could do more’ The worst you will get, is ignorance. Rudeness. Being treated as if you are a hypochondriac. Neglect and dismissal. A Doctor who is oblivious to the latest medical research that shows ME/CFS is a biological, multi systemic illness that can be extremely severe.

Luckily, we do have some incredible medical professors, Doctors and researchers out there who are doing amazing things, such as Nancy Kilmas and projects such as the London Biobank but the reality is, ME/CFS and research into its cause and finding a potential cure is massively underfunded. I pray for the day when funding is increased and medical expertise, support and awareness are commonplace.

Ignorance in Society

The misconceptions and stigma surrounding ME/CFS are also still present in society. Years after the eighties when if was called ‘Yuppie Flu’ we are still encountering comments and remarks such as…

‘Laziness’

‘Bone Idle’

‘All in the mind’

‘Pull yourself together’

‘Everyone gets tired’

‘Can’t you just push through it?’

Those sentences above may well have triggered you if you, like me, are living with ME/CFS. I’m sorry. If those words were horrible to read, they were also horrible to write, but I am (sadly) pretty sure that if you have this illness, you too will have come across those comments during your time with it.

Any time I hear, read or experience comments such as these, my heart breaks. Sinks. All of the people I know who have ME/CFS are ambitious, determined, incredible people desperate to live a normal, full, life.

Personally, I do all I can to help myself be as healthy and strong as is possible. I have tried endless treatments and spent thousands of pounds in my ongoing quest for wellness, however, I am still not cured. I have missed huge life events. My sisters hen do, half of her wedding. Holidays. Gigs. The opportunity to build a career. Start a family. Many, many smaller, but just as important moments, where I have been in bed rather than out there living. We all push through as much as we can, in fact, I push my body harder than I should a lot of the time. The fatigue (and other symptoms) experienced with ME/CFS are so vastly different to ‘normal tiredness’. Pushing too far beyond the body’s current boundaries, leads to devastation and complete collapse.

Shame

On top of the ignorance, the stigma and the medical neglect, there is also one last thing I would like to touch on that know many people with ME/CFS experience. I am talking about Shame.

There are numerous personal experiences I could share here, but I’ll tell you about one with a Sleep Specialist I saw last year. Upon beginning the appointment he asked,

‘So, what do you do for work?’

I explained I wasn’t currently working due to the severity and fluctuating level of ME/CFS I have. There is always a wave of shame when telling people this, it is a question that many people with chronic illnesses who can’t work dread hearing. There is nothing more I would like than to be able to work again, its not my choice, yet, shame washes over me when I have to admit ‘I’m not able to work at the moment.’ It’s a horrible feeling.

This Medical Doctors follow up comment to me was… ‘So you’re a mother? A Housewife…?’

I responded simply with… ‘I’m not a house wife. I’m Single. I’m not a Mother. I don’t Work. I am not currently anything.’

I looked him directly in the eye as I said these words, suddenly aware of all the times in the past that I had tried to justify my current situation. I realised I no longer felt the need to do so. I said it as it is. In that moment, I was completely done with how we are treated and the shame that surrounds this condition.

It saddens me that in society today so much emphasis surrounds what we do for work, achievements, external milestones reached. We are so much more than that, and this is something that it has taken me years to learn.

To accept that I am enough, and I am worthy, whether I am working or not. Whether I am a mother, or not. Whether I am a wife, or not. I was astounded by this medical professionals questions to me that were completely irrelevant to the reason I had gone to see him. It was as if his brain couldn’t make sense of me just existing, as I am, without some sort of traditional life role to clarify my identity.

It can be humiliating when as patients we are faced with questions such as these, especially when asked in a way that is void of compassion. We are missing out on so much already, without having it shoved in our faces by the medical professionals we go to for help and support.

___________________

I was inspired to write this article after a telephone conversation I had with a dear friend of mine. She also lives with ME/CFS and called me for a chat after returning from a Doctors appointment where she encountered ignorance and many things similar to those I have shared today.

It broke my heart hearing her teary voice, not because I felt surprised, but because I wasn’t surprised. These experiences are common. They are not solely my experience, or my friends experience, but the experience of thousands of people living with ME/CFS in today’s world.

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I intended to share this post on 12th May which was M.E awareness day, however due to a setback with my health, it is a few weeks late! But never the less, here is my M.E awareness post, regardless of date or month.

Hope you are all doing as well as is possible…

Emma x

‘Chronic Fatigue Syndrome can turn

a life of productive activity into

one of dependancy and desolation.

I have seen the horrors of this disease

multiplied by hundreds of patients.’

Jose Montoya M.D
Stanford University.

‘ME/CFS Patients are more sick

and have greater disability than patients

with chronic obstructive lung or

cardiac disease’

Dr William Reeves,
Chief of the ME research programme
at the US CDC.

‘They (ME/CFS patients) experience

a level of disability equal

to that of a patient with late-stage AIDS

and patients undergoing Chemotherapy.’

Dr Nancy Kilmas.
ME researcher and clinician 
University of Miami.

‘My HIV Patients for the most, are

hale and hearty thanks to three

decades of intense and excellent research

and billions of dollars invested.

Many of my ME/CFS patients on the other hand

are terribly ill and unable to work …

if I had to choose between the two illnesses,

I would rather have HIV.’

Dr Nancy Kilmas.
ME researcher and clinician.
University of Miami.

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