Written by: David Kegley, Executive Contributor
Executive Contributors at Brainz Magazine are handpicked and invited to contribute because of their knowledge and valuable insight within their area of expertise.
Often thought to be the high achiever’s illness. It often strikes just after a virus when people think they are out of the woods. Chronic Fatigue Syndrome or its more recent medical term Myalgic Encephalomyelitis (ME/CFS), currently affects between 17-24 million people worldwide and up to 2.5 million people in the US, according to the Centers for Disease Control. The symptoms include long-term pain, brain fog and extreme fatigue. However, it is not exclusive to high achievers, many who have it reflect on their once highly active and fully capable lives. It is nonetheless an equal opportunity disease affecting people of all races, genders and ages.
What is currently sending shockwaves through the medical community and most certainly through anyone who has it is the obvious similarity between ME/CFS and long COVID. The symptoms are virtually the same and both follow viruses. The silver lining (if there is any) for ME/CFS sufferers is that it highlights the disease and will undoubtedly speed up research for treatments. The oncoming freight train of long COVID cases will expand the sufferers of this type of illness by the tens of millions.
I have some first-hand experience with two bouts of ME/CFS over a decade ago. I did have some compassionate medical providers who were yet unable to help me. I did seek alternative medicine, which sent me far and wide on expensive and completely unhelpful paths. I did stagger, then wobble, then stumble onto a diet that was luckily helpful for reasons I have yet to explain this decade-plus later. I then embarked on a multi-dimensional, intuitively self-directed, yet slow path back to health. I did a lot of reading and began to discern junk from valuable stuff and the things I ended up trying were specific to my situation. Today, more physicians have a better grasp of how to be helpful to their patients, how to make good recommendations and how to avoid some of the pitfalls of the past.
How to Make Progress if You Suffer from ME/CFS or Long COVID
First, if you do suffer from either long COVID or ME/CFS, recognize that you’ve got to play the long game and not the short one. Avoid quick fixes. Avoid over-the-counter products that promise quick fixes, including supplements and lots of caffeine. Avoid people who promise quick fixes. This results in a lot of false starts, then emotional setbacks, regroupings, getting your energy back all over again and so on.
Back away from blame. This is the space where there is no blame. There is no judgment. If you try something and it doesn't work, that’s OK. If you had success two weeks ago and something happened last week and you lost your momentum, OK. ME/CFS and long COVID are tricky in that they are unpredictable, as is the human condition in general. What we know is that no one likes this syndrome and no one tries to get mired in fatigue. What you are experiencing is real and difficult.
The temptation is to punish ourselves to derive motivation. Unfortunately, that just tends to make us feel bad. So, the trick is to see our tendency to judge or punish coming on, begin to recognize it and just back away from it. Then, re-approach yourself, ready to try again with a resilient spirit.
Work with your doctor to help you find your limits. In the past, the ME/CFS community has often had an antagonistic relationship with the medical community. Sufferers would go to their doctors with fatigue and other complaints and their doctors would run their usual tests, find nothing, and say terrible things like: “It must be all in your head,” or “There’s nothing wrong with you.” Patients would go home, stunned and often in tears and live with their very real experiences. Then they would find each other, often thanks to the internet. That community would be mutually supportive and confirm that they did not imagine things and that it was the medical community that just didn’t know what to do with them that was the real problem.
For the doctor’s part, it was all about the science. If the science wasn’t there, it was their responsibility not to make assumptions. Physicians who were better equipped with empathy had the ability to care for patients’ emotional and social needs at that point, but others had difficulty making that move. Ultimately explaining that they didn’t know what to do for their patients was hard to do.
Today, physicians do know more about ME/CFS and can make some guarded recommendations. They will, of course, want to rule out any number of other things first. But they can help you understand what your current limits are and how to arrive at that understanding.
Work within your envelopes. Those limits that physicians can help you discover are your mental and physical energy envelopes. This is the place where, if you do more than a certain amount of mental or physical exertion, you won’t be able to recover in a day (or longer). This is tricky and sometimes unpredictable, so it involves careful monitoring and patience.
At the right time, there is some wisdom in going just slightly, ever so incrementally, over your envelope. The timing is important. You’ll have to be far enough along to do this. Your body will let you know if it’s too soon. Listening to your body becomes so much more important at this time in your life. An example: if you walked for five minutes six out of seven days last week, try walking for six minutes on your first two days this week and see how it feels. Be that careful, that incremental and that observant.
Search for positives. Of all the things that we can be up against, ME/CFS and long COVID challenges our emotional state as much as our physical state. Staying positive or at least making progress on your general outlook is key for your overall well-being. Find the little clues to the positives in your day. No one expects you to be automatically happy-go-lucky or to shrug off what is happening to you. But try answering this question (or one like it) at three different times in your day: “Even though I struggle, what is one positive discovery—no matter how small—I’ve made from the last several hours of my day?” Knowing that you’ll need to answer a question like this will charge your awareness for the positives. This will help you to be more aware of the constructive aspects of your day and may sow some seeds of hope at a time when it’s necessary.
Stripped down mindfulness. Some of my clients are well-trained mindfulness practitioners. If that is the case for you and you are doing well with this practice, please skip down to the next point. If not, and you’re among the others who may find that mindfulness practice is beyond your reach and/or seems a little too “woo-woo,” here’s something that might fit for you and it still gives you the benefits of mindfulness.
Simply begin with some slow and steady belly breathing (breathe by expanding your abdomen rather than your chest). Breathe very slowly and steadily through your nose. Then, locate a place in your body where you would like to focus. Perhaps you have some tension in your shoulders and you would like to focus on relaxing them or someplace similar. And that’s it. Period. Breathe, long, slow, steady through your nose and focus on relaxing a place in your body.
You may want to start with as little as one or two minutes. Notice how, when you concentrate on simple belly breathing and focus on a place in your body, you really cannot think about anything else. As you can, add minutes incrementally. Only increase at a pace that is comfortable for you. I only suggest a goal of ten minutes, but I’ll leave your final time limits up to you.
Stripped-down mindfulness is still mindfulness. Remember that 10 minutes of this practice done well (or even 3 minutes) is better than 1 hour of any kind of mindfulness done poorly.
Get support. In the category of support groups and websites that now offer some meaningful help, here is a short list:
The page for support groups on the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society.
The ME/CFS & Fibromyalgia Self-Help website gives an international listing of doctors known for their work with these illnesses, including long COVID and support groups.
I offer the above with the caution that if a support group is self-led and does not have a designated end date, or a cycle of leadership, the group can spiral into group misery—a kind of “I’ll take your three-day bout of fatigue and up you by two days, combined with severe back pain, etc.” You don’t want to be talked into a deeper state of stress and anguish because of your self-help group. You want to be given some empathy, hope and shared understanding. Plus, it helps if there is some constructive input, perhaps by a professional healthcare provider on a periodic basis.
The Process of Learning
So much of ME/CFS and long COVID is unknown. Perhaps, due to the connection of long COVID to ME/CFS, the research and protocols will be more forthcoming. Even so, a great deal of how you get better depends on your own learning from your body, mind and emotions and then responding accordingly. Becoming a sharp observer will help you to see what is happening, cope with your situation and discover what works and what doesn’t.
In doing so, you’ll make little adjustments: a dietary change here, better sleep hygiene there, track the different lines of thought that engage you and take your mind off your illness (refreshingly), and keep watch out for the ways your mind gets stuck thinking that your case is hopeless and discover ways to stop negative thoughts when you wander down that path. Keep a journal on your emotional state, see what kinds of humor lifts your spirits, share a little with a friend and see if they are willing to hear your story… and a thousand little experiments with an eye toward what helps and what doesn’t. In all cases, adopt an attitude that you’re on a learning journey and you will keep learning at every turn. This empowers you and puts you more in the driver’s seat.
A Final Word on Support
And finally, those in the helping professions, like therapists and coaches, can make a big difference at the right time. Going it alone can leave you without support at a time when you need it the most. While the symptoms can seem insignificant from the outside looking in, it’s a whole different picture from the inside looking out. Concerns for ME/CFS, long COVID sufferers are real and significant. Support from a professional can play a key role in your well-being.
You can reach David at: drkegley.com or LinkedIn
David Kegley, Executive Contributor Brainz Magazine
Dr. Kegley specializes in coaching well-educated, progressive leaders and executives who have been stopped in their tracks due to health setbacks. His doctorate is in theology and preaching. His first 25-year career was in the Presbyterian Church U.S.A., where he was a Pastor and Head of Staff. But, after getting nearly burned out, getting diagnosed with Prostate Cancer, and going through cancer treatment, he emerged as a credentialed coach. Now he Coaches in the areas where he experienced his own humility and growth: Health and Wellness, The Cancer Journey, Burnout Recovery, and Leadership and Executive.
