I have ME: Here’s what I wish people knew about living with it

The UK Government has announced a plan to improve care for people with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), to address the hundreds of thousands of people with the condition who often fall through the cracks.

ME/CFS is a long-term condition that can affect different parts of the body and the cause is unknown, according to the NHS website.

The Department of Health and Social Care acknowledged that many people with the condition currently struggle to access appropriate tailored care and said that the new plan involves providing NHS staff with new training and investing in research.

 When did you first notice symptoms of ME/ CFS? 

Tracy, now aged 54, first started displaying signs of ME/CFS 11 years ago, when she was recovering from a viral infection.

“In August 2014 I had a viral infection and experienced a lot of aches, hip pains and just a general feeling of being unwell and a lack of energy,” recollects Tracy. “I was still really low in energy and was getting cold symptoms quite regularly afterwards for a few months. I was a really, really active person and I couldn’t achieve the level of activity that I was used to.

“I used to prepare evening meals from scratch, as I loved cooking, and one of the first things I noticed was that I wasn’t able to do that every night. I started doing it less and less and began getting takeaways, or do something that didn’t need preparation, that I could just put in the oven.”

After months of gradual energy decline and increasing symptoms, Tracy first addressed her concerns with her GP in January 2015.

“They said that it sounded like post-viral fatigue syndrome and said it would either just ease off eventually, or it could develop into ME,” says Tracy. “I had heard of ME in terms of I knew that they’d called it ‘yuppie flu’ when I was younger, but I didn’t know anything about it. I had to Google what it was.”

When were you officially diagnosed?

Tracy was officially diagnosed with ME/CFS in January 2018, but had already taken medical redundancy from her biomedical research associate role at the University of Sheffield at that point, as her symptoms had progressed from mild to severe.

“I was finding that I would be fine on a Monday and on Tuesday morning, but by Tuesday afternoon I would start getting cold symptoms,” shares Tracy. “I was constantly blowing my nose, sneezing, and was feeling really lethargic.”

Then she caught an infection and after returning to work after a two-month sick leave period, she was unable to manage even half of her former workload.

“I would go in on a Monday, do a few hours, and be utterly shattered by the time I got home, and then I would feel worse the next day, so that’s why I had to finish that job which I loved,” says Tracy.

“It’s such a complex illness to understand. I try to kind of get to grips with it in terms of trying to find patterns, like when I do this, this then happens, but things change all of the time and new symptoms appear. Every time I think, I’m starting to understand and think I am able to plan ahead, something messes up.”

Unlike normal fatigue, the fatigue in ME/CFS is not adequately resolved by rest.

“I experience different levels of muscle fatigue, it changes constantly by day and even by hours,” explains Tracy. “If I do a movement over and over, or if I have to hold my arm up for something, it gets fatigued very quickly.

“The best way to accurately describe it is that my body and its cells are just not producing enough energy to actually do an action in the first place. Every time I overexert myself I experience post-exertional malaise (PEM), which is an increase in my usual symptoms, plus further symptoms along with further reduced energy levels.”

The symptoms are at their most intense during what she refers to as a ‘crash’.

“To me, a crash is when my body shuts down. It feels like a coma, where I feel paralysed, but I also I have no awareness of what’s going on,” describes Tracy. “It’s like the lights just go off. I start to come around after an hour or so and start to become aware, and then eventually I’m able to move my eyes and then move the ends of my fingers and toes and gradually be able to move bits of parts of my body.

“The regularity of the crashes depend on what I’ve had to do and they vary in how long they last.”

How has ME/CFS affected you mentally?

Although Tracy tries to remain positive, she finds missing out on social events hard.

“I’m a really positive person, so I’m lucky in that respect,” says the grandmother-of-six. “I’m not someone who gets down about things, but you do lose a lot of things along the way, like when I had to stop socialising and had to stop working.

“At the moment, what affects me the most is the fact that, because I’m housebound, I’m not able to go out and do things with my husband. He can go out and do his activities, go to family events, and I am not able to do that. I really miss just being able to take part in my family events, I’ve missed three of my grandchildren’s christenings lately.”

What do you wish more people knew about ME/CFS?

“I wish people looked at it in a different way and considered that it affects every process in the body,” says Tracy. “Eating, speaking, using your brain, digesting food all consumes energy. I wish people realised that the amount of energy it might take them to run a mile, could be the same amount of energy it takes me to digest a meal.”

Furthermore, she wants to emphasis that ME is not depression.

“It’s not like depression at all. I have tons of enthusiasm, which is probably a hindrance because I often end up pushing myself beyond my capability because I am enthusiastic and about everything,” reflects Tracy. “I think ME patients try very hard to do everything possible and to please other people but if someone with ME says they can’t do something, they really can’t do it.”