Voices of ME

Post-Exertional Malaise (PEM) is a condition that impacts the energy and recovery system in people with ME/CFS.  

PEM is the worsening of symptoms after physical or mental effort and this can happen one or two days after even minor activity.  People with ME/CFS describe PEM as “crashing” or “collapsing” with a relapse of symptoms.  It is helpful to understand that normally if a person is fatigued after exertion they will rest and then energy will be restored, but in ME/CFS this physical recovery process is dysfunctional.

Everyone’s experience of ME/CFS and PEM is unique but most can agree that PEM is one of the most frustrating aspects of the condition because it can lead to a significant decrease in the ability to perform everyday activities and can stop them from being able to do things that they love.  It can also be confusing or difficult for others to see or understand the struggle because they may appear active and well one day but be bedridden the next, due to this broken energy system.

Here we will share community experiences of what it is like to live with PEM and how it has impacted daily life. We hope these personal stories provide some insight into the realities of ME/CFS and the importance of awareness and support for those living with this debilitating condition.

When i push harder i get sicker... My condition forced me to make sacrifices in order to improve. hashtag learn from me, 12th may, world me day.

Anne-Marie, Complex Chronic Illness Support member, shares her story:

Anne-Marie was diagnosed with ME/CFS in 2019 after several years of declining health. Looking back now, she recognises that it wasn’t normal to always feel tired or ill, or take longer to recover from simple activities than the people around her. 

Previously a professional cellist, music teacher, and arts administrator, she was always on the go. She could push through the pain and fatigue, but would be left bed bound, initially for one day, then two, then weeks afterwards, with headaches, brain fog, full body pain, and debilitating fatigue. 

After her diagnosis of ME/CFS and subsequently POTS (Postural Orthostatic Tachycardia Syndrome), Anne-Marie had to give up her work, music and hobbies, including her role as a volunteer puppy raiser for Mobility Dogs Trust.

A  pretty young smiling white woman with long brown hair sitting in a wheelchair, wearing light blue skinny jeans, blue lace up shoes, a striped jumper with shades of grey. Beside her sits her service dog, a labrador, wearing a service dog cape. They are outside, in a tiled courtyard with shrubbery in the background.

Anne-Marie now requires a wheelchair to leave the house, which she is able to do once every week or fortnight, with significant recovery time required afterwards.  

And yet she knows she is lucky to be able to leave the house at all. 

Severe cognitive difficulties leave her unable to do one of the things she loves most – reading. Being largely housebound also left her unable to access many things, including visiting the library, op shops or bookstores. 

In 2021, Anne-Marie started a small business to share her love of books with others, selling secondhand books online, hoping to target other housebound individuals. She has “met” many other chronically ill individuals online, who share similar struggles with their health, isolation, and lack of understanding or available treatments. 

While the business is a labour of love, finding a way to work from home was also necessary to help with the added costs of disability and living with a chronic illness that is not supported or recognised by the government. 

Running a small business from home gives her the freedom and flexibility to work around her severe energy limits, and allows her to feel connected to the rest of the world from bed. But like all good things with ME/CFS, even this small amount of work comes at a steep cost, and wouldn’t be feasible without a large support system. 

Despite no longer being able to read physical books, she relishes the chance to chat about books with people online, and has adapted her hobby into a love of audiobooks. She recognises the privilege and support that has allowed her to adapt her life into something that brings her joy, despite such a truly disabling disease.

I learnt that even seemingly insignificant activities like using a knife and fork, can take huge amounts of energy.
Will you hashtag Learn From ME?
World ME Day
It's the feeling of having the flu, running a marathon every day, and being hungover, all at once.
Hashtag Learn From ME.
World ME Day.
When I push harder I get sicker ...
ME/CFS derailed my life 25 years ago with loss of job and no longer being able to do activities that I had loved doing such as running, tramping, and cycling.
Hashtag Learn From ME 12th May
World ME Day
Hashtag Learn From ME
visit worldmeday.org
World ME Day
These words are overlaid over an image of a young white woman, lying in bed with noise cancelling headphones on, and an eye mask. Next to her on the bedside table are various medications, a glass of water.

Kate, ME Support member, shares her story:

Kate was diagnosed with ME 5 years ago after 20 plus years of health challenges triggered from a viral illness. Before this she was hardly ever sick, a school prefect, and played high level sport representing New Zealand for Water Polo. In 2018 her system crashed after pushing through symptoms for too long when numerous doctors weren’t able to help. She suffered with crushing fatigue that did not improve after a full night’s sleep and had to give up work, sports and her social life. She was mostly confined to her home, except for dropping off and picking up her boy from daycare/school and other activities.

Kate also experienced constant body pain, fluctuating headaches, neurological problems resulting in impaired memory and an inability to concentrate and Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in the autonomic nervous system. Any physical, mental, or emotional effort would cause worsening of her symptoms and she had to learn to work within a very small energy envelope.Five years on, Kate has made what is known as significant progress in the ME community, with a reduction in symptoms enough that she can work a small number of hours each week. She can attend more activities with her son, however her dreams of dancing and playing masters level competitive sports are not fulfilled and she is accepting that she may never reach these and other dreams she has.

Dr. Goodwin shares of his experience with living with PEM.
World ME Day
Pushing hard can make different symptoms worse. These words are overlaid over a graphic of a white person covering their eyes with their hands with a grimace on their face. Their head dissolves into pixellated squares demonstrating the toll that PEM takes on the brain and cognition.
World ME Day. Sensory overload comes from everything everywhere all at once. Graphic of a female holding her hands over her face, with swirls of clouds and waves all around her representing overload of sensors from stimuli.

For myself I feel like ME/CFS has halted my life. I went from running Ultra Marathons, completing Iron Mans and being on the go every day to now spending days laying down, too weak to even lift my phone up when I’m at my worst.”

I went from my job as a Registered Nurse where I looked after others, giving my all to get them better, to now fighting to get my Dr to understand how unwell I feel. CCI Support has been able to support me better than my own Dr has. I finally felt like I wasn’t alone and now have a plan to actually get better. It’s given me hope that I won’t feel like this forever.”

Complex Chronic Illness Support member.

“Having a chronic illness – feels like there is an invisible barrier between me and the world. Most people don’t understand what it’s like to be behind the barrier.”

Complex Chronic Illness Support member.

“Some days I can manage a couple hours of computer work before I need to stop for the rest of the day. Other days, I can work all day, and I feel grateful for that productivity. However what quickly follows is several days of being bedbound, unable to think clearly, with no energy to function. My pain increases, I get flu-like symptoms, lose my voice, and have a searing headache across my temples.”

ANZMES member.

Watch the Complex Chronic Illness Support members monthly meeting as they discuss Post-Extertional Malaise and its affects on the lived experience: https://youtu.be/fASkYVmQ_zA

We urge those experiencing PEM to pace today for a better tomorrow.
To find out how, visit our World ME Day page.

World ME Day. Pace yourself today for a better tomorrow.
These words are overlaid on a graphic of a forest, and grass, sun shining and a dove carrying a branch. In the foreground is a couple. A black man in a wheelchair holding the hand of an asian woman.

Learn about PEM and pacing at our special event on May 12 for World ME Day at LearnFromME on Facebook or our YouTube Channel.

Do you need support? Find out more about the ME/CFS and long COVID organisation or support group in your local area.

Read more lived experiences and personal stories of people living with ME/CFS and long COVID, and create your own poster here: https://worldmealliance.org/worldmeday/custom-poster/ 

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