Treating Endocrine (Hormone) Dysfunction in ME/CFS and Long-COVID

I just updated my summary of ME/CFS Treatments (always available through the tab at the top of the page on my blog). It provides a good roadmap for patients and doctors to all of the many effective treatments that are available now for ME/CFS and long-COVID. Many of those treatments are inexpensive and readily available everywhere. I had to add a whole new section on treating endocrine dysfunction because it's something I hadn't covered completely on my blog in the past. I decided to reprint it here, as a new blog post, to be sure everyone sees it.

ME/CFS causes severe endocrine dysfunction--that's the part of the body that controls hormones, and hormones control everything. Messed-up hormones are behind sleep dysfunction (which can be corrected) and are one factor behind Orthostatic Intolerance, too. Since deep, good quality sleep is essential to the endocrine system, correcting sleep dysfunction should be your first step. As my doctor told me 21 years ago, getting good sleep will improve everything (she was right). 

(Note that an endocrine specialist is usually only focused on diagnosing and treating primary endocrine disease, like Graves' disease, Hashimoto's, and others. It may be helpful to see one to rule these kinds of things out, but for most patients with ME/CFS, your primary care doctor or GP can help you with the areas outlined below.)

Here are some other areas of endocrine dysfunction:

Sex Hormones:

Sex hormones can wreak havoc in ME/CFS, too. When I was younger, I got much, much worse whenever I had my period. My doctor switched me to 90-day low-dose birth control pills, which worked great! They keep my hormone levels steady for 3 months at a time. Then, every 12-14 weeks, I stopped taking them for 5 days, got a period, and then went back on them. So, instead of crashing from my period every 4 weeks (25% of my life!), it was just 5 days out of every 3 months or so or 4 times a year. Much better!

In 2022, my OB/GYN told me she was retiring. Since I was 57, she said I had to be fully in menopause by then (our plan was to keep me on the birth control pills until I was past menopause, to prevent worsening from menopause symptoms). She wanted to see me through the transition before she left (yes, she was wonderful). We both knew it would be rough--after decades of holding my hormone levels perfectly steady--but it was much worse than we'd expected! That sudden shift in hormones left me completely wiped out, all my ME/CFS symptoms worse, and mostly bedridden/couchbound. I waited six weeks for the artificial hormones to clear out of my system, got tested, and I was indeed fully past menopause. Then, she started me on Estradiol patches (estrogen replacement, also known as Hormone Replacement Therapy or HRT), along with progesterone pills. As my hormone levels evened out again, I returned to my previous (pretty good) level of functioning. My new OB/GYN has agreed this is a long-term treatment for me because of my ME/CFS (there are risks, though, so it should be discussed with your doctor. Mine ordered tests first).

Testosterone cream can also be helpful to some, especially men with low testosterone.

Thyroid:

For many, many years, I said that thyroid dysfunction was very common in ME/CFS but that I didn't have it. Boy, was I wrong! After that awful transition off birth control pills at the end of 2022, my thyroid was severely dysfunctional. Hormones are all connected (the endocrine system), so when one is off, it can throw the whole system off. This is another reason why it is so critical to correct sleep dysfunction. 

I was already on a low dose of one medication for hypothyroidism, but it clearly wasn't enough. I spent a full year, working with my primary care physician to normalize my thyroid function--getting lab tests (which ones is critical), adjusting medications, waiting two months to retest, etc. Finally, by the end of 2023, with medications and supplements, my thyroid was functioning well. I'm now feeling the best I have felt in years! 

And, by the way, I lost over 20 pounds just from normalizing my thyroid function (no change in diet at that time), and I am at a healthy weight I haven't seen in 20 years. That tells me that my thyroid was off for a long time. This post explains all about Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID, including which tests to ask for.

Low Cortisol:

Low cortisol all the time is a hallmark of ME/CFS. However, the top ME/CFS experts do NOT usually recommend taking hydrocortisone for low cortisol. The biggest problem is that when you add in artificial cortisone, your body stops producing it on its own. So, you take a patient who is already not making enough cortisol and give them something that makes the situation even worse over the long-term. It is likely to help in the short-term but should not be continued for more than a month or so. 

A better approach is one that has worked well for me. The endocrine system dysfunction that causes low cortisol is closely tied to all the other dysfunctional systems in ME/CFS; it's all interrelated, especially in the endocrine system. So, when you treat and correct other problems, the endocrine system just naturally self-corrects and normalizes. So, instead of treating low cortisol directly, treat immune dysfunction, correct sleep dysfunction (a huge factor in endocrine problems), treat OI, improve methylation, treat thyroid dysfunction, and treat underlying infections. When you do those things, the endocrine system just naturally begins to normalize. This has worked well for me, and when I had my 24-hour cortisol test, it was perfectly normal! It showed the expected higher cortisol in the morning, slowly decreasing during the day to a low point at night. 

 Do you have any experience in treating these types of endocrine dysfunction or any others?

Let us know what helped (or didn't).

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

NEW Video: Correcting Sleep Dysfunction in ME/CFS and Long-COVID

I just posted a new treatment video on my YouTube channel, Correcting Sleep Dysfyunction in ME/CFS and Long-COVID. 

Sleep dysfunction is an integral part of ME/CFS and long-COVID (and often fibromylagia, too). Poor sleep makes every part of our disease worse which further worsens our sleep quality, in a vicious cycle. Thankfully, the opposite is also true: correcting sleep dysfunction so that you get normal, natural, deep sleep each night helps to improve everything! The most effective approaches treat sleep dysfunction at its source: endocrine (hormone) dysfunction. This has worked wonderfully for my son and I. We have both gotten 8-10 hours of normal, refreshing sleep every night for over 16 years now.

I posted a written article on Correcting Sleep Dysfunction here on the blog a couple of months ago. The written article is perfect for sharing with doctors, as it is research-based and includes scientific references at the end (which both prove its medical validity and provide additional resources for doctors who want to learn more). This version of the article, as originally published in 2019, is the best one to print and share with doctors.

I made the video for those who have difficulty reading and/or those who learn better through sight/sound. The video covers the same material as the written article. With complicated information, I included text, lists, and charts to help explain.

You can watch the video on YouTube or I will include it below for convenience:

If your cognitive dysfunction/brain fog prevents you from understanding either the article or the video, I recommend asking a friend or family member to read or watch so they can help you. You can also simply print the article and share it with your doctor and ask him or her to help you try some of the treatments.

Twenty years ago, after diagnosing me with ME/CFS, my wonderful primary care physician told me, "The first thing to do is to fix your sleep. That will improve everything." She was right!

If you have any questions, please leave a comment here on the blog or below the video, and I will answer. I would also love to hear about your experiences in treating sleep dysfunction and what has worked best for you.

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Correcting Sleep Dysfunction in ME/CFS and Long-COVID

(This article was originally published on the ProHealth website on September 18, 2019.)

Sleep problems are one of the most common symptoms of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). Sleep dysfunction is a critical piece of the complex puzzle that is chronic fatigue syndrome, and ME/CFS and long-COVID patients are eager for treatments that will help to improve and normalize their sleep. When I was diagnosed with ME/CFS by my primary care physician, she said, “The first thing to do is to correct your sleep problems. That will make all of your other chronic fatigue syndrome symptoms improve.” She was right! Here are ways to help you fall asleep faster, sleep better, and wake up feeling refreshed.

 

Normal, Healthy Sleep

In order to treat ME/CFS sleep dysfunction, it helps to understand what healthy sleep looks like. A night of refreshing sleep consists of sleep cycles, moving through various stages in a predictable pattern: 

• Stage 1 and 2 sleep (light stages of sleep)
• Stage 3 and 4 sleep (deeper stages of sleep)
• REM (Rapid Eye Movement) when we dream. 

 

Those deep Stages 3 and 4 are especially important for immune health, endocrine (hormone) function, and energy; it’s when our bodies recover and rebuild.

 

A healthy endocrine system, which produces hormones at the right times and in the right amounts, helps regulate sleep (and everything else), as follows:

• A hormone called tryptophan is converted into 5-hydroxytryptophan (5-HTP), with the help of vitamins and minerals including iron, magnesium, calcium, B6, and folic acid.
• 5-HTP is then converted into serotonin, with the help of magnesium, zinc, vitamin B6, and vitamin C.
• Serotonin has many important functions in the body, including regulating mood and ensuring good quality sleep by converting into melatonin.
• Melatonin directly regulates wakefulness and sleep. A healthy body naturally makes more melatonin at night, when it gets dark, and less during the day when it is light.

Note that melatonin and cortisol work together to regulate the sleep-wake cycle. In a healthy body, daylight triggers the body to stop producing melatonin and increase cortisol. Throughout the day, cortisol gradually declines, and darkness triggers the body to start producing melatonin and stop producing cortisol. Many studies have shown that most ME/CFS and long-COVID patients have low cortisol levels all the time. Luckily, the reverse is also true: that correcting sleep dysfunction can also help to normalize cortisol levels.

 

Sleep Dysfunction in ME/CFS

Why do ME/CFS patients feel like we are half-awake all night and still exhausted in the morning? Traditional sleep studies comparing ME/CFS patients to healthy controls often find no measureable differences in our sleep cycles, though some show reduced total sleep time and sleep efficiency. Newer studies, using entirely different ways of measuring sleep, though, are finding that ME/CFS patients have more disruptions in REM sleep and deep stage (3 & 4) sleep. Our brains will sometimes jump right from REM or even deep stage sleep into being awake or in light Stage 1 sleep, instead of cycling through each stage, as is normal. These REM disruptions in the studies correlated with worse symptoms the next day.

 

The hormone side is also not entirely clear. The few studies of serotonin levels in ME/CFS patients have shown contradictory results, though some do show abnormal serotonin function, indicating our bodies aren’t controlling serotonin the way a healthy body should. This matters because sleep deprivation causes a multitude of serious health problems, worsening every aspect of ME/CFS.

 

Sleep Studies

When an ME/CFS patient mentions sleep problems, doctors usually send him/her for a sleep study. The problem is, as noted above, that even carefully controlled scientific studies often fail to show abnormalities in our sleep using standard measures. Sleep studies do have an important function, though. They are designed to diagnose primary sleep disorders, like sleep apnea, restless legs syndrome, and narcolepsy. Plenty of ME/CFS patients also have a sleep disorder (some studies indicate we have a greater risk of primary sleep disorders), and it’s important to diagnose and treat those. Consider a sleep study to diagnose or rule out a primary sleep disorder but don’t expect it to find much with respect to your ME/CFS sleep dysfunction.

 

Treatments for ME/CFS Sleep Dysfunction

The key to correcting our sleep dysfunction at its source is to target those hormones that are responsible for good quality sleep. This is different than taking sedatives to knock you out; it means actually correcting the problem so that your sleep feels normal and natural and you wake up feeling refreshed. There are different approaches to try, and it often takes some trial and error, sometimes combining treatments, to find what works best for you. Work with a doctor to find the right combination and to prevent increasing serotonin too much.

• Melatonin. You can directly supplement with melatonin, which is readily available in any drugstore, at bedtime. Most use 3-5 mg of melatonin, but you can start low, with just 1 mg, and go up, as needed, as high as 8-10 mg. Most patients find melatonin slightly helpful, but it rarely completely corrects sleep dysfunction. Note that regular melatonin helps you fall asleep but quickly wears off, so it won't help you stay asleep. Extended release melatonin can help with both falling asleep and staying asleep.
  
• Tricyclic Antidepressants (TCAs). Most antidepressants work by affecting levels of serotonin, and this class of TCAs, which increase serotonin, are particularly sedating for most people, especially nortriptyline and amitriptyline. TCAs also increase epinephrine (a hormone which affects pain threshold), so they can also be helpful for pain. Use a lower dose for sleep dysfunction than would normally be used for depression, and take it 30 min–2 hours before bed. Nortriptyline comes in a liquid, so it can be started at tiny doses and very gradually increased. A study of ME/CFS patients taking 60 mg of nortriptyline at bedtime showed improved symptoms (but start lower).
• Trazodone. A favorite choice of most ME/CFS experts for treating sleep dysfunction, trazodone is also an antidepressant that increases serotonin but in a different class than TCAs. One study of 66 fibromyalgia patients concluded that “trazodone markedly improved sleep quality.” It is known to increase stage 3 and 4 deep sleep, and it is the least likely sleep treatment to lose its effectiveness over time. However, about 20% of the fibro patients tested experienced tachycardia (racing heart rate). If that happens to you, try reducing the dose or try something else. TCAs and trazodone also block acetylcholine, another hormone, which can cause dry mouth or eyes, digestive problems, and other issues with long-term use. Of the three, amitriptyline has the most anticholinergic effect, nortriptyline less, and trazodone the least of the three. Most start with 25 mg trazodone for sleep and go up, as needed, to 50-200 mg. All doctors should be familiar with using TCAs and trazodone to help with sleep, as these are older, very common medications.
• Tryptophan. Alternatively, you can move further up the hormone chain to increase tryptophan (which converts to 5-HTP and then to serotonin). Although tryptophan is found in some foods, most of those are protein-rich, and both tryptophan and serotonin drop after eating protein.  So, experts suggest taking tryptophan supplements instead, along with a carb-heavy snack or get your tryptophan from more carb-rich foods, like asparagus, leafy greens, soybeans, sea vegetables, cauliflower, and sunflower or sesame seeds. For supplements, start with 200-500 mg and work up – as needed – to 1000-1500 mg, taken before bedtime. However, experts do not recommend supplementing with 5-HTP because it blocks other important neurotransmitters and thus will only be effective short-term and then will stop helping sleep and cause side effects. Don’t combine tryptophan with TCAs or trazodone; that would increase serotonin too much.
• Adequate Nutrients. Whichever treatments you try, make sure you are getting the vitamins and minerals necessary for each of these hormones to convert effectively into the next (see Normal, Healthy Sleep above). This includes plenty of magnesium, which some people also find mildly sedating, so you can take it before sleep. Be sure to get a form of magnesium that is well-absorbed, like glycinate, malate, or l-threonate (which also helps with cognitive function). Common types of magnesium found in most drugstores, like oxide and citrate, are so poorly absorbed that they are used as laxatives!
• Prescription Sedatives. Traditionally known as sleeping pills, sedatives are not the best choice for correcting sleep dysfunction. They help you fall asleep and stay asleep, but they will not improve the quality of your sleep. Older ones, like Valium, actually worsen your sleep quality, further disrupting the deep sleep stages. Newer choices, like Ambien, Lunesta, and Sonata, will not disturb sleep, but they also won’t improve it. They do have a place, though, as an occasional extra treatment, when more help is needed.
• Over-the-Counter Sleep Aids. Antihistamines like Bendaryl (diphenhydramine), anything with a “PM” in the name, and other over-the-counter sleep aids are best used short-term only. Most use diphenhydramine as a sedative, but your body quickly gets used to it and then it won’t work as well. Additionally, it will not improve your sleep quality and has anticholinergic effects over time. These are best used for just for a few days at a time, when you need some extra help, especially if you need them for other reasons, like an allergy flare or temporary pain.

 

Our Experiences

My son and I both have ME/CFS, plus tick infections, but I listened to my doctor all those years ago and treated sleep dysfunction first. Once my son got sick, we did the same for him, and we have both been sleeping a solid 9-11 hours of good quality, normal-feeling sleep every night for over sixteen years … and waking up feeling refreshed most mornings.

 

I first tried amitriptyline at its lowest dose, but it left me groggy in the morning. Next, I tried nortriptyline liquid in tiny doses (and we started with that for my son) and gradually increased the dose as needed, until we each leveled out at an effective dose; then we switched to more convenient capsules. After a year or two, the nortriptyline wasn’t working quite as well, so we added trazodone, again starting low, at just 25 mg. We both ended up (he’s an adult now) at a combination of 50 mg nortriptyline and 100 mg trazodone (low doses compared to what is used for depression). 

 

We both also take timed-release melatonin supplements (3 mg for me and 5-10 mg for him), and I have a prescription for low-dose Ambien that I only use rarely, when I travel. We both also take plenty of magnesium (both malate and l-threonate) and the other nutrients listed above. Lab tests can help to show which nutrients you need more of and which you have plenty of; for instance, we are both very high in B6, so we don't supplement with it.

 

My doctor was right: correcting sleep dysfunction has helped to improve all of our symptoms. When combined with other treatment approaches, like treating orthostatic intolerance and immune dysfunction, my cortisol levels normalized, too.

 

You can read more about our own experiences using trial and error to find the right combination treatment in my earlier post on Correcting Sleep Dysfunction.

 

Sleep Hygiene

Although the sleep dysfunction of ME/CFS can’t be corrected just with standard guidelines for “sleep hygiene,” you do need to promote better sleep, in addition to whatever treatments you try. As one sleep expert explains, getting a good night’s sleep requires an intricate coordination of many different elements, including some of the basics:

• Keep your room dark and cool. Studies show people sleep most soundly when their room is 60-67 degrees Fahrenheit (blankets are fine). Use room-darkening blinds, shades, or curtains.
• Get plenty of daylight during the day. As soon as you wake up in the morning, open the curtains and get lots of natural light throughout the day--it tells your body to stop making melatonin and make more cortisol, making you more alert. That also helps when it gets dark, to tell your body it’s time to sleep.
• No screens two hours before bedtime. Besides electronic devices being stimulating, blue light emitted from them tells your body to stop making melatonin. Try reading a print book, listening to an audio book, or just listening to relaxing music before bed. If you must use an electronic device in the evening, use bluelight-blocking glasses (cheaper or try these, top picks in testing) or screen protectors. I sometimes read with an e-reader before bed, but you can adjust the display for less blue light. On my iPad Mini, I go to Settings, then click on Display and Brightness. Click on Night Shift, and you can set a time period each day when the display will switch to less blue light. Mine is set for Night Shift from 9 pm to 7 am, and I have the "color temperature" all the way to More Warm (which is less blue light). These settings should work on any Apple device.
  
• Wear warm socks. Research shows that warm feet helps you to fall asleep more easily and sleep more soundly. I tried wearing soft, warm socks for my naps and found that it works.
  
• Naps are probably OK! One common sleep hygiene rule you should NOT follow is the advice to avoid daytime naps. That’s for healthy people, not us. Our bodies often don’t make enough energy to get through the whole day. It is far better to take a nap mid-day than to push yourself to stay awake until you are “wired and tired,” making it even harder to sleep at night. My after-lunch nap is an essential part of my day and allows me to function into early evening. My How to Nap video has lots of practical tips for getting effective, proactive rest before you crash.
  

 

Myalgic encephalomyelitis/chronic fatigue syndrome and long-COVID are a complex web of intricate causes and effects, involving every system in the body. When sleep is disrupted, problems in the endocrine, immune, and nervous systems occur, worsening all ME/CFS symptoms in a vicious cycle. Similarly, when you treat sleep problems in ME/CFS, there will be improvements in all of these systems, leading to improved symptoms. Best of all, improving those systems will lead to even better quality sleep, in a positive domino effect. The best treatment approaches not only help you fall asleep and stay asleep but improve the quality of your sleep so that you wake up feeling refreshed and ready for a new day.

 

Suzan Jackson is a freelance writer who has had ME/CFS since 2002 and also has Lyme disease. Both of her sons also got ME/CFS, in 2004 at ages 6 and 10, but one is now fully recovered after 10 years of mild illness and the other is living on his own and working, with ME/CFS plus three tick-borne infections. She writes two blogs, Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com, and wrote the book, Finding a New Normal: Living with Chronic Illness, available everywhere. You can follow her on Twitter at @livewithmecfs.

 

References

 

“Trazodone (Desyrel) Is.” Phoenix Rising website.

 

Alban, D, Alban P. “Use Tryptophan to Boost Serotonin for Better Mental Health.” Be Brain Fit website (April 3, 2019).

 

Bell, D. “Sleep in CFS.” Lyndonville News (January 2005) 2(1).

 

Castro-Marrero, J, Sáez‐Francàs, N, et al. “Treatment and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: All Roads Lead to Rome.” British Journal of Pharmacology (March 2017) 174(5), pp. 345-369.

 

Cleare, A. “The Neuroendocrinology of Chronic Fatigue Syndrome.” Endocrine Reviews (April 1, 2003) 24(2), pp. 236-252.

 

Field, T, Hernandez-Reif, M. et al. “Cortisol Decreases and Serotonin and Dopamine Increase Following Massage Therapy.” International Journal of Neuroscience (July 7, 2009), pp. 1397-1413.

 

Jackson, ML, Bruck, D. “Sleep Abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review.” Journal of Clinical Sleep Medicine (December 15, 2012) 8(6), pp. 719-28.

 

Kishi, A. Presentation: “Sleep Disturbances in ME/CFS.” The National Academies of Science, Engineering & Medicine – Health and Medicine Division. May 5, 2014.

 

Kishi, A., Natelson, BH., et al. “Sleep-stage Dynamics in Patients with Chronic Fatigue Syndrome with or without Fibromyalgia.” Sleep (November 1, 2011) 34(11), pp. 1551-60.

 

Lapp, C. “Using Antidepressants to Treat Chronic Fatigue Syndrome.” CFIDS Chronicle (Summer 2001).

 

Morillas-Arques, P, Rodriguez-Lopez, CM, et al. “Trazodone for the treatment of fibromyalgia: an open-label, 12-week study.” BMC Musculoskeletal Disorders (Sep 10, 2010) 11, p. 204.

 

Rowe, PC, Underhill, RA, et al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: a Primer.” Frontiers in Pediatrics (June 19, 2017).

 

Yamamoto, S, Ouchi, Y, et al. “Reduction of Serotonin Transporters of Patients with Chronic Fatigue Syndrome.” NeuroReport (December 3, 2004) 15(17), pp. 2571-4.

 

Yavropoulou, Maria P, et al. "Protracted Stress-induced Hypocortisolemia May Account for the Clinical and Immune Manifestations of Long-COVID." Clinical Immunology (December 2022), p. 245.

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Extensive Evidence That GET & CBT Are Harmful to ME/CFS and Long-COVID Patients

That headline should be nothing new to the large and growing population of patients with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and long-COVID, also known as PASC (post-acutes equelae of COVID-19). But, unfortunately, far too many doctors and other medical professionals worldwide continue to urge their ME/CFS and long-COVID patients to exercise and/or prescribe traditional physical therapy, in spite of evidence that these practices are often harmful to these populations.

Now, there is a single scientific paper that pulls all that evidence into one short summary: Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, published in Advances in Bioengineering and Biomedical Science Research in January 2023.

This paper references nine different research studies or scientific papers previously published that all come to the same conclusion: that forcing patients with ME/CFS or long-COVID (PASC) to exercise makes them worse, and that it is unethical for doctors to choose any treatment path that could be harmful.

Just the fact that this many previous studies and papers have been published--and, as the author points out, as a result, the UK's NHS revised its NICE guidelines in 2020 to reflect these findings--should mean that doctors are no longer causing harm to their patients in these ways. Unfortunately, that's not the case, and doctors all over the world continue to urge their ME/CFS and long-COVID patients to be more active, exercise, and are even still prescribing traditional physical therapy.

So, if you have encountered one of these misinformed medical professionals who still insists on recommending increased activity, exercise, GET (Graded Exercise Therapy), or traditional physical therapy, click that link above, print the brief paper, and share it with him or her. The best way for us to help change these outdated and harmful practices is to help spread the word.

And once you've educated your doctor that exercise and GET are harmful, help him or her to understand how they can help you with real medical treatments instead. My Effective Treatments for ME/CFS (and Long-COVID) summary is a great place to start. The treatments that have helped my sons and I the most are almost all inexpensive and readily available through any primary care doctor/general practitioner (and there are even some treatments you can try on your own, though it's always best to do so under a doctor's supervision).

I've also written some articles on treating ME/CFS and long-COVID that are perfect for sharing with medical professionals because they are brief and include scientific references at the end (and are written so you can understand, too)--and these are the best treatments to start with, for maximum benefit:

Correcting Sleep Dysfunction in ME/CFS

Treating Orthostatic Intolerance/Dysautonomia in ME/CFS (including POTS)

The best part? If you start by treating Orthostatic Intolerance (OI) effectively, then you often can begin to tolerate increases in activity and small bits of exercise, at your own pace while listening to your body and wearing a heart rate monitor. But you need to treat the underlying causes of exercise intolerance (including OI) first.

Help spread the word! Print a copy of this new paper to share with your own medical professionals!

Top Ten Blog Posts of 2021

It still seems weird that it's 2022 now, doesn't it?  Sounds like science fiction! Plus I've had COVID for the past three weeks (caught from my father-in-law's nursing home, in spite of all my precautions), so this has not been a typical January for me! I still need to take a look back at my own personal health year, but in the meantime, I thought I'd share the most popular posts on my blog for the past year.

As is pretty typical here on the blog (which I started in 2006), 6 of the Top 10 posts last year were ME/CFS treatment posts. There is just so little information out in the world--and especially in the medical community--about how to effectively treat our disease that anytime I share our treatment successes, there is a lot of interest from patients and caregivers. It's also no surprise that 3 of the Top 10 posts last year were about COVID vaccines and ME/CFS, which is still a hot topic. And the 10th post is just a head-scratcher!

Here are the Top 10 Posts from the blog in 2021, in order from most popular:

1. Heart Rate and Post-Exertional Crashes in ME/CFS - over the past few years, I've seen this topic attract more and more interest from patients, as different kinds of heart rate monitors have become more common. Monitoring heart rate is a great way to quantify your limits, know when you're doing too much, and help to prevent post-exertional crashes. The post includes how and why it works, how to estimate your own limits, and tips on finding the right heart monitor.
2. Opinions and Editorials on the New Name and Criteria - this one is the head-scratcher! It's a post from 2015 that is really not very relevant anymore, yet it continues to attract a lot of visitors. There must be a link to it somewhere that keeps bringing readers to it, though the new name never caught on.
3. Orthostatic Intolerance (OI) and ME/CFS - This post is from 2010, but I still constantly share it with people. OI (POTS is one type) is an integral part of ME/CFS and often a part of fibro, EDS, MS, Lyme, and other diseases. The good news is that treating OI often improves all symptoms and allows you to be more active without crashing, so this post deserves its spot in the Top 3! It's one of several treatments that have quite literally been life-changing for my sons and I.
4. Prep for ME/CFS Patients Getting a COVID Vaccine - This post was actually #3 in a 3-part series (the other two are below and linked at the start of this post), so you might want to read them in order. In this post, I review different kinds of treatments that can help to improve your immune system and reduce the chances of an adverse reaction from any vaccine, including advice from the experts. Note that the treatments in this post will help to improve your overall condition, whether you're preparing for a vaccine or not!
5. ME/CFS and the COVID-19 Vaccines - This was the first post in the 3-part vaccine series, describing the specific kinds of immune dysfunction common in ME/CFS, how vaccines work, and our past experience with other vaccines.
6. Increasing Glutathione in ME/CFS and Related Illnesses - Glutathione is a naturally occurring antioxidant in the human body that people with ME/CFS (and many related illnesses) just don't make enough of. Increasing your glutathione will help with energy, detox, and most importantly, improving immune function. There are many ways to increase glutathione (some that you can try on your own cheaply and without a prescription). Increasing glutathione has greatly improved immune function in my son and I, taking us both from 4-5 bouts of bronchitis a year to maybe once every two years, plus improving our daily ability to function.
   
7. Imunovir and Inosine for Treating ME/CFS - Inosine is another treatment that helps to normalize the immune system and has had a huge positive impact on my son and I, providing massive improvements in all symptoms, our quality of life, and allowing us to be more active without crashing. And in most places, it is available as a supplement, without a prescription, and is cheap!
8. Treating ME/CFS Sleep Dysfunction - This was one of my first treatment posts, and it's still one of the most important! My own primary care doctor, after first diagnosing me with ME/CFS, said, "The first thing we need to do is fix your sleep--that will make everything better!" (Yes, I am very lucky to have found this doctor.) She was right! Correcting sleep dysfunction and getting good quality sleep every night improves all symptoms, in a domino effect (better sleep improves endocrine function, immune function, etc.). By the way, this post is about actually correcting sleep dysfunction and restoring normal, natural sleep, not knocking yourself out with sedatives.
9. COVID Vaccine Experience of ME/CFS Patients - This was the 2nd post in that 3-part series on COVID vaccines, covering patient experience to date, including where you can go to read about others' experiences.
10. The Methylation Cycle: Central to ME/CFS - Another area of treatment that can yield great improvements. Almost everyone with ME/CFS (and many related illnesses) has dysfunctional methylation, and improving it can improve all symptoms and also allow you to try other treatments. If you can't tolerate even small doses of medications and supplements, this is why! Start with methylation--many of the treatments for it are readily available and inexpensive.

That's it! The Top Ten posts from this blog in 2021--and, coincidentally, an excellent outline of simple, inexpensive treatnents that can greatly improve your condition.

How To Nap

NOTE: I also made a video on How to Nap, if you prefer to watch rather than read.

For many of us with ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome) or other chronic illnesses, a daily nap (or at least an occasional nap) is a fact of life. We can't create enough energy in our cells overnight to keep us going all day and need to recharge partway through the day. As I was settling down to nap yesterday, with all my various routines in place, I realized that my many years of experience as a champion napper might help others better learn how to get that mid-day rest they need.

NOTE: Sleeping at night is a different story, due to the sleep dysfunction of ME/CFS, which is caused by endocrine (hormone) dysfunction. This can be treated (without sedatives); my son and I have both had solid, natural, refreshing sleep 8-10 hours a night for over 15 years now. For details on how to correct sleep dysfunction, see Correcting Sleep Dysfunction in ME/CFS and Long-COVID, based on my article for ProHealth (excellent for sharing with doctors). That said, all of the tips below will help with nighttime sleep, too; they just won't be enough on their own to restore the deep stages of sleep you are missing.

I began taking a daily nap--every day, no exceptions--shortly after my diagnosis, a little over a year after first becoming ill in 2002. I read a memoir/nonfiction book, Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS by Gregg Charles Fisher (with contributions from several doctors). I had spent a year looking for answers and finally had a name for the disease that had stopped me in my tracks. This book brought me to tears, finally recognizing my experiences in someone else's words. Fisher does a great job of describing his own (and his wife's) personal experiences, but he also talks about the science and medicine behind the disease (what was known at the time) and practical tips for living with it. Just learning about exertion intolerance/post-exertional malaise (PEM) changed my life.

One of the concepts Fisher talks about in the book that was eye-opening to me was the idea of proactive rest, of resting before you crashed. He describes how learning to rest before he completely runs out of energy greatly improved his quality of life. Since my first year of ME/CFS had been marked by huge ups and downs and the pattern of feeling better, getting active, then crashing badly again, I realized this could really help me. That's when I began napping every day.

So, with 18 years of daily napping under my belt, here are my hard-earned tips for a good, restful nap:

REALLY Rest

I found out early on that lying on the couch, reading, or watching TV did not help my body to recover for the rest of the day. I had to truly rest, in bed, with my eyes closed. In fact, as you'll see below, the preparation for a nap will eventually become a habit that will help to tell your body that it's time to shut down for a bit.

Make the Room Dark, Cool, and Comfortable

Experts and doctors have proven that 60-67 degrees F is the ideal temperature for solid, refreshing sleep, so make sure your room is dark and cool at naptime. How do you do that at mid-day? I nap in my bedroom and close our room-darkening blinds (room-darkening, insulated curtains work well in my son's room). In the summer, it is hard to cool the 2nd floor, where our bedroom is, enough for a daytime nap, so I turn the air-conditioning down temporarily and turn on a fan. Our son (the fan expert!) likes these little turbo fans and really loved this taller multi-fan unit for maximum air circulation when he was in college. When it's really hot out, and our bedroom is just too warm, I nap in our finished basement, which is always cool (and dark). The cool temperatures really help.

Like anyone, when it's not too hot, I like my bed with plenty of soft pillows and comfy blankets. Like many with ME/CFS, I have trouble regulating my temperature and tend to be too hot a lot of the time, so layered blankets that can be adjusted are important.

Help Your Body Relax

Every afternoon before my nap, I take two valerian/lemon balm tablets and two magnesium capsules. Valerian is an herb with mild sedative properties, like chamomile; it just relaxes you and makes you a bit sleepy. In fact, chamomile is another great alternative, especially a warm cup of chamomile tea before your nap. We like Celestial Seasonings Sleepytime Tea. But, since I already have trouble with having to pee every 30 minutes (part of Orthostatic Intolerance, our bodies can't hold onto fluids), I just take the valerian tablets. Warning: valerian is very stinky! That's why I avoid the regular capsules and like these coated tablets, which also contain lemon balm, another calming herb.

As for magnesium, people with ME/CFS need a lot of it anyway; it helps with neurological symptoms, pain, headaches, and cognitive function. It also helps with sleep. However, you have to choose the right types. The kinds usually sold at the drugstore--magnesium oxide and magnesium citrate--are poorly absorbed and cause diarrhea. In fact, magnesium citrate is often used for colonoscopy prep! So, yeah, skip those or you'll spend naptime in the bathroom. Instead, opt for types that are well-absorbed, like magnesium malate, magnesium glycinate, and magnesium l-threonate. That last one is the only type of magnesium that crosses the blood-brain barrier (i.e. gets into the brain), so it is especially good for cognitive function and neurological issues--it even helps with dementia.

These gentle herbs and magnesium just help me to relax and get sleepy. For me, they wear off pretty quickly (I usually read for 20-30 minutes and nap for 45-60 min), but you can experiment to see how they work for you. They can help make you sleepy before bed at night, too.

Wear Warm Socks

OK, this one sounds weird, but hear me out. I read a study (it's science!) that keeping the feet warm helps you to fall asleep faster and sleep more soundly. I tried it and it works! Now, every afternoon before I get into bed (except on the hottest days), I put on soft, warm, fuzzy socks (they make them for men, too); I just pull them on over my regular socks. I usually read at the start of my nap, and within 15 minutes, I start to get really sleepy. It works!

Sensory Deprivation

Another way to make things dark is to wear an eye mask of some sort. My husband got me a nice eye mask/ear plug set for travel for Christmas, and it's super-comfy (I was using a very old freebie I got on an overseas trip about 15 years ago that had no elastic left in it!). However, when I'm at home and in bed, I prefer not to have that strap around my head, so I just use a men's size soft, dark sock. I just "borrowed" one from my husband, but this is the kind I use. Since I sleep on my side, I just lay that over my eyes, with the leg part over my head; it's soft, comfortable, and not at all restrictive. My mom likes this kind of eye pillow, filled with lavender (another calming herb).

I struggled for years with traditional foam earplugs. I know they work well for some people, but I have small ears, and I can never get them situated just right. Then, I read about silicone earplugs: life-changing! They are little blobs of silicone that come in a case (usually a dozen). You take one out, roll in around in your fingers and mold it into your ear so that it fits perfectly. Plus, the silicone is much better at reducing noise than the old foam-style. Whether you are blocking out lawn mowers and garbage trucks at home, ambient noise while traveling, or a snoring partner, silicone ear plugs work really well.

Settle Down

With all that prep in place, now it's time to help your body relax and settle down to get ready to rest. For me, that means reading, but you might listen to calming music or an audiobook (probably best to avoid Stephen King at naptime). I darken the room and turn off the lights first and use a headlamp to read: another signal to my body that it's naptime.

This would also be a great time to meditate, in whatever way works for you. I do this after I put my book down and lie down with my eye sock on and my earplug in. You can repeat a calming mantra to yourself; focus on tensing and releasing each muscle in turn, from your toes to your head; or even just focus on slow, deep breathing. Most experts recommend a slow 4-count inhale through the nose, hold for 3-4 seconds, and then a slow exhale. This kind of breathing is often all it takes to send me off to dreamland. I find it also helps to tune in to my senses. Of course, I have covered my eyes and plugged my ears, but sometimes I can still hear rain outside or the fan, and focusing on what I feel (soft pillow, warm feet, comfy bed) helps. There are also some great guided meditations available (choose a short one pre-nap) and loads of apps now, like Calm.

Can't Sleep? That's OK.

Although this routine usually puts me to sleep for about 45-60 minutes (90 minutes if I'm having a bad day), some days, I just can't fall asleep, even though I know I need it. I might have something on my mind or am just feeling restless. 

On those days, I remind myself that if I can't sleep, then simple rest will still do me some good. I continue my "settle down" routines: deep breathing while I count the slow inhale/exhale, meditation, tuning in to what I feel, tensing and releasing muscles. I might end up falling asleep ... or I might not, but at least I had some time in bed, totally relaxed, in the dark and quiet, to allow my body to recharge a bit for the rest of the day.

Wake Up!

A routine can help when your nap is over, too. I usually wake up because I have to pee (again), so that gets me out of bed. After I use the bathroom, I splash cold water on my face and eyes for a few minutes, which helps to revive me. I put my contacts back in and head downstairs for my "after nap meds." With help from our dietician, I arranged my daily supplements so that some of the more-stimulating ones (things that help improve energy) are in the after-nap box. I usually also have a cup of herbal tea with a wakeful flavor/scent, like Celestial Seasonings Lemon Zinger. In the summer, I might have a glass of decaf iced tea with lemon in it.

Finally, it is very important to get some daylight, if possible, to help your body recognize that it is wakeful time again. I don't have the energy for a full walk in the late afternoon (my beta blocker is starting to wear off by then), but I usually walk out to the mailbox or slowly walk around our cul-de-sac, just a little outdoor time to help my body shift out of nap mode. When the weather is nice, I like to sit out on our deck in a reclining chair. Nature and the outdoors are very important to my well-being: just watching the clouds or listening to the birds rejuvenates me. I might bring my laptap out there with me or, on a bad day, my book.

That's how I nap every day! My nap is an essential part of my daily routine. It not only helps to prevent me from overdoing and crashing later, but it recharges me so that I have the energy to write a blog post, make dinner, and enjoy the evening with my family. Without it, I'm a puddle by 3 pm.

And now it's time to make dinner--thank goodness for my nap today!

Weekly Inspiration: Strategies and Tools for Changing Habits

You may have thought about life improvements like eating healthier or improving your sleep habits or even learning something new. Changing habits can be hard, though, and even more challenging when you live with chronic illness and are plagued by pain, exhaustion, and other symptoms. It's not impossible, though! You can still improve your life and change your habits - you just need to think more along the lines of tiny changes and using tools instead of resolutions and willpower (which don't really work for anyone!).

My latest article, Strategies and Tools for Changing Habits, was published on the ProHealth website about a month ago. You can read it there, at the link, or I will reprint the full text below.

What habits would you like to change or improve in your own life?

Reprinted with permission from ProHealth:

Strategies & Tools for Changing Habits

All that January buzz about New Year’s resolutions is dying down now, but you can change habits and improve your life at any time of year. It’s tough when your life is limited by chronic illness to hear all the non-stop talk about major life changes online, on TV, and in magazines at the start of every year. Who can muster up “willpower” when you are stuck on the couch or in constant pain?  

Life improvements and habit change are still possible, though, even with chronic illness. The key is to think in terms of small changes made using tools and strategies, instead of that overwhelming (and frankly, ineffective) concept of willpower. No, we can’t just push through our limits to accomplish things…but guess what? Most healthy people can’t make long-term, sustainable changes that way either!

Whether you want to eat healthier, get to bed earlier, learn to meditate, or learn a new hobby, here are some strategies and tools for changing your habits, one small step at a time:

Think Small!

Tiny steps in the right direction are more effective – and far more doable for those with chronic illness – than wide-sweeping resolutions. Maybe one of your goals is to eat healthier. Instead of trying to make a bunch of changes all at once (and probably soon reverting to old habits), change one small aspect of your diet at a time. Maybe your first step is simply to eat more fruits and vegetables. Once that has become a habit (perhaps in a month or two), then add in another small step, like reducing sugar. Little by little, you will move toward your goal. Baby steps!

Write It Down.

There has been plenty of research on this, and it applies equally well to those with chronic illness. Write out the habits you’d like to change or the goals you want to reach. Don’t stop there, though. I used to write goals every January and then be disappointed every December that I didn’t meet them! Then, I started adding specific objectives under each goal and small, measurable targets for each objective – baby steps, remember? In the example above of wanting to eat healthier, it might look like this:

Goal: To Eat Healthier

Objective #1: Eat more fruits & vegetables

Target 1: Buy frozen fruits & veggies and pre-cut produce to make sure they are always on hand and ready to use.

Target 2: Ask friend/family member for help making a pot of vegetable soup to freeze each weekend so I have easy, healthy meals ready during the week.

Target 3: Make breakfast healthier by adding fruit to oatmeal or smoothies or adding veggies to my eggs.

Objective #2: Reduce added sugar.

Etc.

Both breaking your desired habit changes into tiny, doable steps and writing them down can help to make slow, steady progress, as long as you don’t write them and forget them.  Review objectives and targets at the start of every week, to remind yourself of the target(s) you are currently working on and the bigger picture you are working toward. It also helps to track your progress, perhaps with a simple checklist for each week or, in the example above, writing down how many servings of fruits and vegetables you eat each day.

Get Smart & Learn More.

Expanding your knowledge can help you to change your habits. Maybe you want to meditate every day. A good first step is simply to learn about different kinds of meditation by reading some articles or watching some online videos. This first learning step can help to narrow down your options so you choose things to try that you think might work for you. Remember…baby steps! Start with just 5 minutes a day, testing out different approaches that you learned about.

Link to Existing Habits.

I have found this strategy particularly helpful, to link a new habit I want to adopt to an existing habit that is already a solid part of my routine. For instance, I wanted to do some yoga stretches each day because I always felt better after I did them. The solution was to insert my simple 10-minute yoga floor routine into an existing part of my day. I chose morning because it helps to loosen up stiff muscles, and I inserted the yoga stretches after I shower or get washed up and before I go downstairs for breakfast. It worked! Those yoga stretches are now an integral part of my morning routine. I’ve done the same thing to have more reading time. My husband and I turn off the TV at 9:30 every evening and get ready for bed. Then, we have an hour in bed to read before our lights-out time at 10:30. Now, it’s become a habit, and reading is a part of our evening routine.

Know Yourself.

Knowing yourself can help to set you up for success. In my yoga example, I added yoga to my morning routine because that’s when I feel best. Maybe for you, mornings are difficult but you function better in the afternoon, so you can try to establish a new habit then. Self-help guru Gretchen Rubin, author of The Happiness Project and Better Than Before, talks about lots of different ways to know yourself, like whether you are an abstainer or a moderator. Say you are trying to give up sugar. Will you be more successful with a moderation strategy of having one square of extra-dark chocolate a day? Or would you end up eating the whole bar and are better off just not bringing the chocolate into the house? She has many more examples of ways to know yourself that can help you to make habit changes that fit your needs and will stick.

Keep Trying.

You know the old adage: “If at first you don’t succeed, try, try again!” It’s been around for so long for a reason – it works! The key to long-time success in changing habits is to not give up at the first sign of a challenge. Perhaps you want to get to sleep earlier, and you’ve set yourself a target to turn off the TV and get in bed by 10 pm. You do well the first week, and then you get caught up in a new Netflix show and end up binge-watching past midnight. Oops! Remember it’s only a minor setback. Re-read your targets the next morning and re-dedicate yourself to get back on track. Or maybe you decide your target isn’t quite right for you and needs some tweaking – that’s fine, too. It’s more important to keep trying than to have a quick success.

Establishing new habits that will stick isn’t easy, especially for those living with exhaustion, pain, and limitations, but it is doable, with the right strategies and tools. Forget all that rah-rah noise about New Year’s resolutions – Run a marathon! Write a book! Lose 20 pounds! – and instead focus on small steps you can take today that will help to change your habits for good and bring you closer to meeting your goals. Baby steps!

Suzan Jackson is a freelance writer who has had ME/CFS for 17 years and also has Lyme disease. Both of her sons got ME/CFS 15 years ago, but one is now fully recovered after 10 years of mild illness and the other just graduated from college, with ME/CFS plus three tick-borne infections. Sue writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com You can follow her on Twitter at @livewithmecfs.

Throwback Thursday: Correcting Sleep Dysfunction in ME/CFS

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Copyright: ruigsantos / 123RF Stock Photo

In the Facebook group I started for parents of kids with ME/CFS and related illnesses, there have been a lot of discussions recently about helping our kids get better quality sleep. The good news is that researchers have found out quite a bit about the sleep dysfunction in ME/CFS, and - even better! - there are ways to actually correct it at its root cause (not sedatives but ways to correct the hormonal problems that lead directly to sleep dysfunction). Correcting sleep dysfunction is extremely important because if your body isn't getting deep Stage 3 & 4 sleep (as is true for us without treatment), then everything else is going to be worse, especially immune dysfunction, endocrine dysfunction, and autonomic nervous system dysfunction - it is all connected together.

This blog post I wrote back in 2009, Treating ME/CFS Sleep Dysfunction, is still the best and most accurate information I have about sleep dysfunction. It explains WHY our sleep is messed up, exactly what is wrong with it (hint: sleep studies and sleep specialists rarely help), and how to correct it. These approaches have worked wonderfully for my son and I for about 12 years now - we both get normal, refreshing sleep (including deep sleep) every night for 9-11 hours and wake up feeling good and ready for a new day. Note that, like all treatments for ME/CFS, finding exactly the right treatment for sleep dysfunction for each person usually takes some trial and error because we are all different. The kind of meds (again, not sedatives) that work well for my son and I (low-dose TCAs) don't work for a small minority of people due to a genetic defect that prevents them from metabolizing TCAs - if you have your genetic data, you can check for that or you can try them and see. The best approach is to use the two articles I link to in that post (the chart is especially helpful) and to work with your doctor to try different things until you find what works best for you - always start with super-low doses.

That is the primary way to correct sleep dysfunction, but treating other aspects of ME/CFS will usually have a positive effect on improving sleep (though for us, we still need the meds to correct sleep dysfunction.

In particular, treating Orthostatic Intolerance can help prevent random bouts of tachycardia (racing heart beat) during the night that disrupt sleep, so that will help somewhat but won't completely correct your sleep dysfunction. Specifically, though all OI treatments have the potential to help sleep a bit, taking low-dose 24-hour (extended release) beta blockers at bedtime can reduce or eliminate those bouts of tachycardia during the night...and, bonus! you wake up in the morning feeling good and ready to be active.

Treating Immune System Dysfunction can also improve sleep somewhat, since immune dysfunction is at the heart of this disease and is behind the endocrine dysfunction that causes the sleep dysfunction (yeah, we have a LOT of dysfunctions). It's a vicious cycle, so improving one aspect of this illness almost always improves others.

Finally, when you have ME/CFS, you should ignore some of the classic sleep advice that you will get from doctors and even so-called sleep specialists - they usually don't understand our specific type of sleep dysfunction. In particular, I cringe when I hear that a doctor told an ME/CFS patient NOT to take daytime naps and to force him or herself to stay awake during the day. This is terrible advice for someone with ME/CFS because the more exhausted we get, the more dysfunctional our sleep will be. When we get over-tired like that, we end up "wired and tired" and even less able to get a good night's sleep. So, instead of listening to the so-called experts, you need to Listen to Your Body and focus on what helps you to feel best. As most of us have learned the hard way, pushing past our limits only makes us sicker. Also, proactive rest is usually very helpful - where you rest before you feel wiped out in order to to try prevent that complete crash. For me, this means a an afternoon nap every single day, as I explain in this post, How My Daily Nap Saves Me.

Hope all that helps you to improve your sleep and correct your sleep dysfunction - it makes every other aspect of the disease better!

Sweet Dreams!