I remember going to the first NIH conference on chronic fatigue syndrome (CFS) back in the 1990s. I was so excited. They were finally starting to do something!

Researcher after researcher stood up to speak, every single one of them beginning with “I don’t know why I was invited. I know nothing about this condition.”

As they invited nobody with any familiarity with the disease, it was sad but not surprising that, at the end of the conference, their conclusion was that they couldn’t do any research on CFS, because they had no way of telling if people were getting better. Even as a young physician, it was all I could do to keep from strangling them, and telling them “Just ask people if they are better!”

Yes, it is better to have what are called validated scales for these studies. But given the way the research is going now, it may take them more than a decade just to develop these before they even start effectively researching any treatments. Which is IMHO insane!

In the years soon after the NIH conference I mentioned above, I did two studies showing that effective treatment is available for CFS and fibromyalgia, including post-viral (which is what long COVID is). The second of the studies was a randomized double-blind placebo-controlled study, which I designed with the help of NIH researchers, who were very generous with their help. 

But interestingly, they asked me to make sure I didn’t tell anybody their names. I suspect helping design a study using natural therapies does not help people’s careers in academia. I don’t think this has changed much, and studies on natural therapies will largely be buried or ignored, leaving people to wait over 20 years for a patentable, very expensive new pharmaceutical to wend its way through our broken system.

Long COVID – How to Tell?

Fatigue, achiness, or brain fog lasting at least two months past the onset of COVID suggests post-viral chronic fatigue syndrome or fibromyalgia. This is a key form of long COVID, and what we are addressing here. It can be accompanied by dozens of other symptoms including gut issues, sinusitis, shortness of breath, and a host of others. So many that most physicians will often just get confused and give up. Sometimes they even imply that “I don’t know what’s wrong with you, so you are crazy!” 

I would note that this is abusive behavior and totally unacceptable on the part of physicians. As opposed to an honest statement of “I’m sorry I don’t know what’s wrong with you. Let’s see if we can find somebody who does.” The bottom line? Tired, achy, brain fog, widespread pain or even insomnia post-COVID lasting over two months? That represents post-viral chronic fatigue syndrome and fibromyalgia, currently called “long COVID.”

The Good News? SHINE to the Rescue

Our published placebo-controlled research showed that 91% of people can improve, with an average 90% increase in quality-of-life.

It takes a comprehensive program that we call the SHINE protocol to optimize energy production and turn the “hypothalamic circuit breaker” back on. This key center, which can go off-line after numerous infections, controls sleep, autonomic function (blood pressure, pulse, and gut function) and your entire hormone system.

Recovery requires addressing SHINE:

Sleep.

As the illness progresses, insomnia can become severe because the hypothalamic sleep center is malfunctioning. Sleep often needs aggressive support.

Hormones and Hypotension.

The hypothalamus controls both, and these need to be addressed despite the hormone and blood pressure tests being “normal.” Tired, achy, weight gain, or cold-intolerant? People need a trial of thyroid hormone despite normal tests. Irritable when hungry (“ Hangry”) ? This suggests the need for adrenal support. Racing pulse after standing up? This suggests the blood is going to the legs and staying there, called orthostatic intolerance or POTS. You can email me for a free POTS information sheets at FatigueDoc@gmail.com . This will include two easy-to-do at-home tests that will screen for this condition as well as guide you and your doctor on how to help you recover from long COVID. [As always, one should consult their personal healthcare practitioner.]

Infections.

Numerous secondary infections, including Epstein-Barr virus reactivation, have been documented.

Nutritional Support.

Low sugar, increased healthy salt, increased water intake (even for those who already “drinking like a fish”), a good multivitamin high in B complex and magnesium (e.g. Clinical Essentials) and other nutrients and a commonsense diet can help a good bit.

Exercise as able.

Listen to your body. This may be walking ½ a mile or as little as 50 steps of walking a day, depending on your ability to make energy. If you do too much, you may find yourself bedridden for a few days after (called post-exertional malaise or PEM). This frightens people, worsening deconditioning. PEM won’t harm you, but it doesn’t help you either. So, listen to your body in terms of what you are able to do to avoid severe deconditioning. Do that, but not enough to trigger the PEM.

How I got involved?

I came down with severe post-viral chronic fatigue syndrome while in medical school. My dad had died, and I was paying my own way. The post-viral CFS caused me to be too sick to work, leaving me homeless and sleeping in parks. I had to drop out of medical school, and I felt like my life was over. 

But it was as if the Universe put a “Holistic Homeless Medical School” sign on my park bench. Herbalists, Energy Workers, Naturopaths (I didn’t even know there was such a thing!), and others came by and taught me the bits and pieces I needed to learn to recover. After a year, I was able to return to medical school, get my honors in Medicine, and have since completed eight studies on effective treatment of post-viral  and other causes of CFS and fibromyalgia.