Energy, exercise, mitochondria, long COVID, ME/CFS, etc.

I almost started to cry when I heard this piece on National Public Radio’s Morning Edition. (The audio clip is at the link, as well as a written transcript which may offer a bit more information than the audio in addition to links to the studies cited and to people providing commentary.)

The piece discusses that people with long COVID have physical changes in their tissues that showed cause for their exhaustion or “post-exertional malaise.” The mitochondria in the muscle cells were not functioning properly, so the muscles could not get the oxygen and energy they needed. It appears that this mechanism is also at work in people diagnosed with ME/CFS and other similar, poorly understood syndromes that exhibit these symptoms.

A member of my family was diagnosed with ME/CFS, then called fibromyalgia/chronic fatigue syndrome in the United States, as a young adult, although she had been having symptoms since early adolescence. She was told that she needed to exercise to build her strength, which was common advice at the time but which proved to be detrimental to her. If she tried to push herself physically at all, she would wind up in so much pain and with so much fatigue that she could barely move for a week or more. As I was listening to the radio piece, I was thinking back to those days, when she was so debilitated that we would strategize when or if she could join the family from her upstairs bedroom because she could only manage the fourteen stairs between the levels once a day, at most.

What made a terrible situation worse was that the doctors would think she “wasn’t trying to get better,” essentially blaming her for her condition when the root of the problem was their lack of understanding of ME/CFS. Effort or mental attitude is not going to repair one’s mitochondria.

I appreciate that research money going to study long COVID is also increasing understanding of ME/CFS and other conditions with similar symptoms. (You can read some of my prior posts referencing long COVID and its commonalities with ME/CFS here and here.) I’m hoping that increased understanding will bring more effective treatments and, at least, an end to blaming patients for “not trying hard enough” to get better.

Compassion is needed in these situations, not judgmentalism.

Compassion is always needed. 
*****
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Author: Joanne Corey

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34 thoughts on “Energy, exercise, mitochondria, long COVID, ME/CFS, etc.”

  1. The additional suffering “health care providers” so often put on their patients is unacceptable.

    It’s not at all surprising that Long Covid has these effects. That’s why it’s so frustrating that so many people, once they get COVID the first time, drop any and all mitigiation practices because “they got it already” and they keep getitng it (and keep spreading it) and then wonder why they get sicker and sicker. I realize part of it as that the CDC sold us all down the river to please the CEO of Delta way back when, but come on.

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    1. Thanks for your prudent observations, Devon. I’m collecting info for another COVID update and the lack of what had been reliable and current CDC information and statistics is upsetting.

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    1. Unfortunately, some people are still facing problems with getting diagnosed and treated properly – or at all – here in the US. I do understand that medical science is continually advancing through research but it’s frustrating that so often patients are left feeling that they are somehow to blame for their condition.

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  4. Hi Devon, thank you for doing this post. My daughter suffers with ME/CFS. When she first became ill, we faced a lot of big obstacles and challenges, it was first mentioned when she was 11, but then it was dismissed, she became very ill and then she was misdiagnosed, I had to fight to get a second opinion for her, and saw someone in another part of the Uk it was then we was told again that it was ME/CFS. We have had to go it alone for the past 10 years because no-one knows how to help her as they know nothing about her condition, each day is a challenge for her, I saw her go from a thriving young girl who could of become a professional dancer, to now having to rely on a wheelchair to get around. ME/CFS along with other conditions that are not well known people need to become more aware of it. Again thank you for doing this post.

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    1. I’m so sorry to hear of your struggles with ME/CFS. I’m especially sorry that you haven’t been able to get treatment. Because I’m US based, I’m not familiar with the UK system and resources, but I wonder if there is any research being done at a medical college or University that might be able to connect you with an expert that could advise your local doctor.

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            1. Hoping that you will find the help you need and that better health will follow.

              I tried to reach your site, but ariaswritingjournal.com isn;’t being found. Just wanted to let you know so you can edit your account to point to the right site.

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              2. Thank you for the information, what is the world coming to, when it comes down to patients doing the jobs of the health professionals to find some sort of relief from their condition. Anyway I really appreciated the article, it was so insightful.

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                  1. Thank you so much for all the info you have sent me, I really appreciate it. It’s about time they were educated on this condition, as even now I am still faced with a battle with the doctors. Hopefully the U.K will soon follow, but it’s a start, which is always good news.

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