A Checklist for Severe ME/CFS
ME/CFS is not caused by deconditioning. But those with the illness should be aware of the deconditioning that can occur after illness onset. Special attention is especially required for those severely affected. The bed ridden or immobile incur more severe challenges than less severe cases.
We know a lot about these effects. A large body of research exists surrounding bed rest in the elderly and injured. There is also interesting findings from studies of space flight that gives clue to the physiological effects of immobility and non-weight bearing.
Things can be done to prevent a spiral of ill-effects due to immobility. Things other than exercise.
Here is a bullet-point summary of the effects of bed rest that face those with severe ME/CFS. These points come from longer posts on each topic which can be indexed here: #Severe MECFS
Muscle Movement:
Muscle atrophy can occur after just 10 days of bed rest.
Muscle atrophy contributes to inflammation (via TNFa) and increases fatigue.
Isometric resistance exercise of any type can improve muscle mass.
Standing or supine vibration therapy at 30–40 Hz and 2mm amplitude optimizes muscle strength.
Active and passive range of motion movements can improve fluid circulation to prevent joint and ligament degeneration over time.
Medications that reduce cortisol can preserve muscle mass due to inactivity.
For details and literature references about movement in the post: Movement
Oxygen
Bed rest can result in low-level hypoxia.
After just 2 weeks of bed rest, blood cell mass is decreased.
Bed rest can produce orthostatic intolerance which affects blood pressure and flow.
Raising the feet 6” can improve OI and oxygenation.
Supervised oxygen administration should be considered in severe ME/CFS to optimize blood oxygen levels.
Hyperbaric oxygen therapy (HBOT) may reduce pain and fatigue.
Yogic or other breathing techniques taught by respiratory therapists can be instituted daily to improve oxygenation.
For details and literature references about oxygen in the post: Oxygen
Light
Vitamin D deficiency commonly occurs with bed rest.
Lack of natural sunlight due to bed rest can disrupt circadian rhythms leading to metabolic and endocrine disruption.
Light boxes may relieve depressive symptoms caused by lack of natural sunlight.
Newly designed light boxes that provide UV (without skin damage) are effective at raising vitamin D when outdoor activity is not possible.
FL-41 tinted lenses are effective for symptoms related to photophobia.
For details and literature references about light in the post: Light
Nutrition
Increase dietary protein to 25% of total calories to mitigate dramatic losses of bed rest.
The amino acid leucine is essential for muscle growth.
Increase salts to reduce orthostatic intolerance associated with bed rest.
Increase calcium intake, in conjunction with vitamin D, when bedridden to counter rapid losses.
For details and literature references about nutrition in the post: Protein
