The severe ME/CFS patient is severely limited in their mobility. This may vary widely from individual to individual. Some are unable to leave bed while others may tolerate upright positions for daily hygiene routines. The detrimental effects of immobility on the whole person cannot be understated and steadily worsen the condition to prevent improvement. Special attention to muscle mass in the severe ME/CFS patient is vital to stabilize the condition and to prevent eventual bone loss.

This is part of a 3-part series on special considerations for severe MECFS patients.

Studies in older adults show losses of nearly 1kg of lean tissue from the lower extremities after 10 days of bed rest, with an associated 16% decline in lower extremity strength. These losses of mass and strength have been observed at 14 or 28 days of bed rest in younger individuals. Put another way, with bed rest, large muscle groups can lose 50% of their bulk in 2 months’ time. The lower extremities, hips, and lower trunk are most effected. Lean tissue lost is replaced by fat and connective tissue. The degree of muscle mass and strength loss in ME/CFS will be highly dependent on age as well as muscle function prior to illness onset.

Studies of the effects of prolonged immobilization in zero-gravity astronauts as well as head-down bed rest (HDBR; no foot elevation) exemplify the serious effects of inactivity in the table below:

To compound the ME/CFS condition, inactivity of skeletal muscle is linked to the experience of fatigue. This is due to release of cytokines that trigger sickness behaviors in the central nervous system. A vicious cycle can ensue with chronic release of inflammatory cytokines that stimulate TNF-a, which has the function of inhibiting skeletal muscle repair. Muscle also becomes less sensitive to insulin and metabolically sluggish to process food stuff for energy.

How can one prevent or undo these challenges without exercise?

No medications are available to preserve muscle mass in the severely ill and immobile. Dietary measures can be helpful. Muscle loss can be regained in those whose condition improves, and can resume weight-bearing activity. However, these gains are slower than the original losses. How can you exercise, when you cannot exercise?

Means to Counter Muscle Loss

Fluid and electrolyte balance relies on postural changes and movement. Feet elevation is a simple means to improve head-ward fluid shift to maximize nutrition to muscle. Soviet-era cosmonaut studies were performed to determine the best angle, and it was deemed to be 6 degrees (15” foot vertical elevation). These findings are now routinely prescribed in the clinical setting and standard in research methods.

Elevating the legs also may improve orthostatic intolerance. Even the briefest interventions from repositioning and passive range of motion may reduce capillary compression and local low-flow states. Fluid shifts can stimulate specialized receptors in the carotid and aortic arteries affecting blood pressure and heart rate, and improving orthostatic intolerance. It is believed that excessive blood pooling in the legs is the primary contributor to orthostatic problems associated with bedrest.

Very, Very Light Exercise

Exercise is of course the best means to improve muscle dysfunction resulting from bed rest. For the most severe, these exercises are not feasible and shouldn’t be tried. However, some less severe ME/CFS patients may be able to tolerate very light resistance exercise. This may include light-weight lifting with the extremities and can be performed in the supine position. Focus should be on the lower extremities and lower trunk, as these are the muscle groups most affected by bed rest. Even gentler, isometric (muscle contraction without joint movement) exercises can be just as effective. Without special equipment, isometric resistance training can be performed through bodyweight exercises for those who can tolerate upright positions. Examples include standing or floor postures that focus on balance (e.g. easy yoga poses, planks, one-leg stands).

In a small Japanese study, 30 repetitions of isometric leg presses improved muscle strength and muscle insulin sensitivity following 20 days of bed rest. This exercise simply involved lying with both feet pressed on a wall, the participant pushing the feet into the wall without moving at the hip. Here’s a video. All of these, no matter how simple, are effective in putting tensile strength on large muscle groups to stimulate growth, repair, and bone strengthening. Even 5 repetitions, or 5 minutes, of simple movement, can benefit muscle function in the immobile patient.

Vibration

Whole-body vibration therapy has been long used for injury rehabilitation and post-space flight rehabilitation. These devices are now available to the regular consumer. Vibration therapy functions by stimulating the contraction of tonic (slow twitch) muscle groups, many of these being muscles important for posture and joint stability. The effects are comparable to traditional resistance exercise with less effort and fatigue on the individual. Research supports vibration frequencies of 30–40 Hz and amplitudes of about 2mm for optimizing muscle strength.

Vibration therapy has been shown in several studies to improve muscle strength and preserve bone mineral density. A small 2010 study using vibration therapy (2x for 6 weeks) in patients with mixed severity MS, showed muscle strength improvement in all participants. While this study required upright vibration therapy, other studies have found similar results using supine vibration therapy, with the platform in contact with the bottom of the feet. Vibration therapy appears to be most effective at enhancing resistance exercise effects. It could be combined with the simple body-weight exercises mentioned above.

Stretch

Prolonged bed rest not only affects the muscle tissues but also the connective tissues. With muscle tissue loss, fibrous fatty tissue may deposit around joints which can limit flexibility. Over time this new inflexible tissue can alter normal joint ligament flexibility to promote contracture and adhesions. This may result in chronic pain and predispose to injury and degenerative joint disease.

The bedridden should incorporate regular, daily stretching to improve flexibility. This may include twice daily light range of motion exercises that can be performed actively (by the individual) or passively (by a caregiver). Simple stretching activities such as these also help fluid circulation around joints, thereby improving cartilage nutrition. Tissue collagen orientation and strength can also be influenced by a simple stretch.

Pharmacological

Controlling cortisol is key to preventing bone and muscle loss due to immobilization. This stress hormone can reach abnormally high levels due to condition chronicity and the bed rest itself. Other medications may be used to improve blood volume and improve orthostatic tolerance. No medications are available to preserve or build muscle mass.

Nutrition  

Fluid and salt loading has been used to counter the ill effects of immobility by targeting blood plasma volume and orthostatic tolerance. For astronauts, they are urged to consume 8g of salt in 1 liter of water regularly upon re-entry to improve plasma volume. Intravenous saline infusion may also be used in a medical setting. As we learned in a prior post, increasing dietary protein is also effective for maintaining muscle mass and strength.

Calcium excretion is increased with bed rest which leads to a sustained negative calcium balance that can weaken muscle and bone over time. To make matters worse, calcium absorption is reduced in the gastrointestinal system. Ensuring adequate calcium levels nutritionally is essential. Keep in mind calcium absorption is contingent on adequate Vitamin D levels. Vitamin K also plays a major role in maintaining calcium balance.

If you missed it, read other posts about severe ME/CFS. Important talking points about light and preventing low-level hypoxia.

References

Kortebein P. et al. (2008) Functional Impact of 10 Days of Bed Rest in Healthy Older Adults. The Journals of Gerontology: Series A, Volume 63, Issue 10:1076–1081.

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.

Tabata, I. et al. (1999). Resistance training affects GLUT-4 content in skeletal muscle of humans after 19 days of head-down bed rest. Journal of Applied Physiology, 86(3), 909–914.

Wunderer, K., Schabrun, S. M., & Chipchase, L. S. (2010). Effects of whole body vibration on strength and functional mobility in multiple sclerosis. Physiotherapy Theory and Practice, 26(6), 374–384.

D. K. Dittmer & R. Teasell (1993) Complications of immobilization and bed rest. Part 1: Musculoskeletal and cardiovascular complications. Can Fam Physician. 9: 1428-32, 1435-7.