M.E. & Me: a message to COVID-19 long-haulers

I am strong. You’re not going to hear many people say that. They’re bragging; they’re over-confident. No one wants to be perceived as either. So you’re certainly not going to typically hear people with M.E. say this.

So why would I be saying this about myself?

Ironically, the COVID-19 pandemic triggered the thought. There is a group of people that have contracted the virus and came out on the other side of it. Some of them have coined the term “long-haulers” since a number of them have nagging, perhaps long-term changes to their health. Things such as “brain fog”, headaches, constant aches & pains, heart palpitations and bone-crushing fatigue, on a daily basis.

This is very familiar to myself and millions of M.E. (Myalgic Encephalomyelitis) sufferers from around the world. It sounds like us.

Some of us have been suffering a short time, but some of us have been suffering for decades, in a strange kind of medical limbo. There are no known treatments, no MSP(Medical Services Plan) codes when we do seek treatment, and many health care professionals have no understanding of it, thereby making it next to impossible to get any help. Little or no government support is available, even though research (& many years of it) has shown that at any given moment, M.E. patients often contend with as many (or more) health issues as M.S., lupus and diabetic patients do (re: the U.S. C.D.C.).

On top of that, quite often there is little, or no understanding of the disease, by family, friends, or society as a whole. So for the most part, support of any kind has to come from within ourselves. It is lonely. It is challenging. We go to sleep each night, to wake up the next day, to push what feels like a boulder uphill again.

Research has shown that one of the possible initial triggers of M.E. could be a viral illness. The same applies to COVID-19 “long-haulers”. Now that some COVID-19 survivors are reporting the same type of symptomatology that M.E. patients have been dealing with for years, there is hope within the M.E. research community that there will be more funds available to help solve this mysterious condition. This could lead to treatments, or better yet, a cure.

I feel for the COVID-19 “long-haulers”. To contract a virus that leaves you changed. The fear that your new “normal” may not be your old “normal”. That simple things like being able to go for a walk, finish a project, or a myriad of other things, may no longer be do-able. That you may have to adjust your expectations in every area of life.

I have lived this way for 30 years now. Many choices one has in life: work, career, family, relationships, are deeply affected by this type of serious illness. I’ve had to attune my mind and heart to having less in life, and at the same time, taking satisfaction from the smallest of achievements in a day; I got up; I ate breakfast; I walked a short distance—-that might be it. I’ve had to get used to a myriad of symptoms, that taken altogether, end up being a serious, life-altering condition.

I say I am strong, because after years of struggle, I have found constructive ways to cope. Regardless of the challenges that M.E. throws my way daily, I find joy in many things. That’s all anyone can do in any difficult situation in life.

To “long-haulers”: I hope that the lingering physical symptoms that you are currently experiencing, resolve entirely. Regardless, know that I & many other M.E. sufferers, support you in your struggles. We have had many years of experience to draw upon. I hope that you will support us—-a group of “long-haulers” as well. If we work together, perhaps we can help bring about the help needed in order to solve the riddles of our very similar conditions.

We support you!

Kim Eggers

Prince George, BC

September 2020