Tag: ME/CFS

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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long COVID and ME/CFS

One of the fears that I have about COVID is the risk of experiencing long COVID, where any number of a vast constellation of symptoms occurs for months/years after the acute infection phase.

The symptoms are very similar to those that characterize ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I have a family member with ME/CFS, so I am achingly familiar with the level of disability that can result. ME used to be referred to as fibromyalgia in the US, but now the ME designation is more common.

The October 5, 2022 edition of the (US) National Public Radio show On Point features an extensive discussion of long COVID and ME/CFS and how long COVID researchers and clinicians are learning from their peers who have been working for years on ME/CFS. All of these conditions are underdiagnosed and undertreated, so I wanted to share this with all of you. I believe this link will permanently take you to a recording of the episode. If the link breaks, you can try searching from the On Point link above or searching on your favorite podcast platform.

Anyone who has experienced these conditions or seen a loved one contend with them knows how difficult they can be. I want to raise awareness so that everyone affected can get the help they need. I also want everyone to realize that these conditions exist and are serious. Too often, affected people are dismissed and told their symptoms are “all in their heads.” While there is still much to learn, help is available, although it may be difficult to find, depending on the medical resources nearby. I hope we will all support research and treatment expansion so that the millions of people affected get the help they need.