An unfortunate truth of ME/CFS is that many of those afflicted are confined to bed for all or most of the day. These periods of confinement can extend days, weeks, months, years. As we known from other conditions that require confinement, like renal failure, the perils of bed rest may worsen symptoms even further and exacerbate the entire condition—a vicious cycle. Perhaps worst of all, severe ME/CFS patients have less access to healthcare than other bedridden diseased.

This article is part of a 3-part series on special considerations for severe ME/CFS.

Detrimental Effects of Bed Rest

Prolonged bed rest readily leads to deterioration of the entire person. Muscle atrophy, bone loss, decreased venous return, and a greatly increased risk of cardiovascular disease are common. These changes can be seen after just 48-hours of bed rest. Read dietary strategies to maintain muscle mass during bed rest here.

Due to orthostatic problems, many with ME/CFS have very limited mobility when bedridden. This supine lying position is associated with a decrease in lung volumes and thus lowered blood oxygenation—hypoxia. For those bedridden with severe ME/CFS, the diminished oxygen state of bed rest can further exacerbate their condition. Even mild hypoxia can change the heart rate, increase stress hormones, cause cognitive deficits, and other effects.

Indeed hypoxia itself has been suggested in the pathophysiology of ME/CFS. A 2018 study from the Hanson group at Cornell University, compared 823 metabolites in patients with ME/CFS and healthy controls. In those with ME/CFS, they found differences in metabolites related to an imbalance in redox status, meaning an imbalance in oxidative stress protection. This imbalance leaves cells low in oxygen (hypoxic) and prone to promote inflammation. Excess oxidative stress is a key hallmark of the illness in various other studies, including brain imaging.

Prolonged bed rest also is detrimental to the red blood cell. After just 2 weeks of bed rest, red blood cell mass is observed and steadily declines. The red blood cell stimulating hormone erythropoietin (EPO) also declines with bed rest. This can limit the oxygen-carrying capacity of the red blood cells.

Oxygen Therapy

Oxygen therapies are potential treatment options to mitigate the hypoxic state brought on by prolonged bed rest. Hyperbaric oxygen therapy (HBOT) is available at some centers and shows promise in ME/CFS and fibromyalgia symptom reduction. Hyperbaric oxygen administers oxygen at an ambient pressure greater than atmospheric pressure. Because of this, oxygen must be administered in a special pressurized chamber, limiting its potential for home use.

A study of 60 female patients with fibromyalgia aged 21–67 years, were treated with 40 sessions of HBOT at a frequency of 5 days/week, for 90 minutes. They then underwent a period of no treatment as a comparative control, followed by repeat HBOT treatment. HBOT led to significant amelioration of all fibro symptoms, with significant improvement in life quality. Brain imaging via SPECT was also conducted following HBOT. This showed changes in brain areas associated with pain. In another study of ME/CFS patients (Fukuda selection), 16 patients underwent 15 treatment sessions of HBOT, 5 days a week, for 3 weeks. Though not compared to a control group, these patients also experienced decreases in symptom severity and an increase in life quality.

However, many severe ME/CFS patients cannot access HBOT facilities to trial this therapy. Similarly, the price tends to be exorbitant for routine use. Home oxygen therapy has well-established benefits for patients with various lung diseases. Prescription of home oxygen may be available for the home-bound, bed-bound patient. The now retired ME/CFS specialist Dr. Paul Cheney also used to frequently prescribe home oxygen therapy to ME/CFS patients, even as little as 1 hour of treatment per day seemed to be effective. Therapy of this kind would require careful medical instruction for safety. Patients may consider consulting a trained respiratory therapist.

Breathing Techniques

When access to oxygen therapies are unavailable, simple breathing exercises may also be beneficial. Many techniques are commonly prescribed to those with lung diseases, like COPD. The goal is to improve breathing mechanics and facilitate better oxygenation.

1. Diaphragmatic Breathing

While sitting or lying down with your shoulders relaxed, put a hand on your chest and the other hand on your stomach.

Take a breath in through the nose for a count of 2. Feel your stomach move outward. Your stomach should move outward more than your chest.

Purse your lips and breathe out slowly through the mouth, pressing ever so lightly on your stomach to enhance your diaphragm’s ability to release air.

Repeat the exercise as you are able.

2. The 4-7-8

Other breathing techniques are gaining popularity as an adjunct to yoga practices. The 4-7-8 breathing exercise is adopted from the yogic practice of pranayama. In this method, place the tip of your tongue behind the upper front teeth then exhale forcefully through the mouth—making a whooshing sound. Follow this by closing the mouth and inhaling through the nose for a count of 4. Next, hold the breath to a count of 7, then exhale through the mouth making the same whoosh sound for a count of 8.

3. Equal Breathing

Inhale over a count of 4, followed by an exhale over the count of 4. With practice, increase the count to allow for deeper and longer breathing.

There are myriad other yogic breathing techniques that can help strengthen respiratory muscles, sync breathing mechanics, and improve oxygenation. Consult YouTube for instructional videos.

Be conscious of your breath regardless of the severity of your ME/CFS. A regular breath exercise practice may improve your condition. The most severe patients are encouraged to mitigate the ill effects of immobility and hypoxia as much as possible.

References

Winkelman, C. (2007) Inactivity and Inflammation in the Critically Ill Patient. Crit Care Clin 23: 21–34.

Germain A. et al (2018) Prospective Biomarkers from Plasma Metabolomics of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Implicate Redox Imbalance in Disease Symptomatology. Metabolites. 8(4): 90.

Pavy-Le Traon, A et al. (2007). From space to Earth: advances in human physiology from 20 years of bed rest studies (1986–2006). European Journal of Applied Physiology, 101(2), 143–194.

Morris G. et al (2018) The putative role of oxidative stress and inflammation in the pathophysiology of sleep dysfunction across neuropsychiatric disorders: Focus on chronic fatigue syndrome, bipolar disorder and multiple sclerosis. Sleep Med Rev. 41:255-265.

Efrati S. et al (2015) Hyperbaric oxygen therapy can diminish fibromyalgia syndrome--prospective clinical trial. PLoS One. 10(5):e0127012.

Akarsu S. et al (2013) The efficacy of hyperbaric oxygen therapy in the management of chronic fatigue syndrome. Undersea Hyperb Med. 40(2):197-200.