Recovery From ME/CFS - Part 1

“I’m crying because I feel somebody gets it for the first time," said Candace. "Someone appreciates what I’ve been going through and believes me when I tell them how awful I feel.”

Recovery from ME/CFS and Long Covid can happen. Over the next few weeks, I would like to present examples of patients who have recovered from ME/CFS. I hope you will benefit from seeing the treatments they used, and how they responded.

The first example I'd like to present is of Candace. Candace is a young woman who has had ME/CFS for ten years, beginning soon after an episode of mononucleosis (Epstein-Barr virus). In fact, Candace has been suffering from ‘post-viral syndrome’ ever since. Post-viral syndrome is also at the heart of ‘Long Covid’.

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Candace’s symptoms began shortly after she was diagnosed with mononucleosis at age thirty. Mono caused her to become bedridden for four months, after which she gradually became more functional and was able to return to work at a tech startup in New England. After three months back at work, she had a severe relapse of her symptoms and had to stop working again, spending another four months in bed.

For the past several years, Candace has been able to hold down a full-time job in the tech industry, but she struggles mightily. Her symptoms include waves of profound exhaustion, brain fog and memory issues, daily headaches, frequent colds and flu-like illnesses, as well as depression and emotional lability.

Candace comes across as a hard driving, success-oriented person. The word ‘no’ did not appear to be in her vocabulary. As an example, Candace needed to have a total knee replacement at age thirty-five. After looking at her MRI scan, Candace’s orthopedist told her the arthritis in her knee looked as if it was from a 70-year-old patient. Candace had just been pushing through the pain.

Moreover, very few people believed that Candace’s symptoms were real, including her primary care physician, who thought she might just be depressed and diagnosed her with recurrent major depression. Candace tried taking an antidepressant on a couple of occasions, but they ultimately made her feel worse, leading to one episode of fainting.

Candace related the following during our initial consultation, “I can’t even count the number of times I’ve cried at my primary doctor’s office. I’ve begged them to refer me to a clinic studying ME/CFS, but they would dismiss me and say I was too emotional, and it was probably just depression. It’s been a decade of people telling me there’s nothing wrong with me, and there’s nothing they can do to help. This experience has been hard on my whole family, as they are also at a loss for how to help, especially when I get very sad about how time is just passing me by. Because of this illness, I haven’t been able to live up to what I hoped my life would be.”

Ultimately, it became clear to me that Candace’s feelings of depression and emotional lability were a valid reaction to her being physically ill for over a decade and repeatedly being told there was nothing that could be done. She had not been properly diagnosed. And a proper diagnosis is the first step to proper treatment and ultimately, to recovery.

When I told Candace I believed her depression and emotional lability were a normal reaction to her being ill with an undiagnosed medical condition that was sapping her strength and vitality, she began to sob.

“I’m crying because I feel somebody gets it for the first time. Someone appreciates what I’ve been going through and believes me when I tell them how awful I feel.”

When I asked about her daily routine, Candace said, “I'm lucky I can work from home. I take meetings lying on the couch and have at least one serious energy crash every day that lasts for 2-3 hours. It’s usually accompanied by a headache. If I need to take a client out in the evening to close a deal, I really suffer the next day with a crash. I also get frequent sinus infections and sore throats.”

JK: Five months later, Candace was tremendously better and was well on the way to fully recovering. Over the next few weeks, I would like to present examples of patients who have fully recovered from ME/CFS. Recovery from ME/CFS and Long Covid can happen. The next installment of Candace's story will be posted next Wednesday.

Read Part Two - HERE

Keep Hope Alive!

Jon D. Kaiser, M.D.

www.JonKaiser.com