Best practices for hospitals

This is a set of best practices for hospitals to better provide care for patients in an in-patient, emergency room, surgical or out-patient setting. Patients with myalgic encephalomyelitis often have a variety of care needs that are not well-understood by the medical community.

Surgery

Anesthesia

It is important for patients to meet with their anesthesiologists in advance to discuss special considerations for anesthesia. Many patients with ME have mast cell activation disorder or are otherwise sensitive to certain classes of drugs currently used in anesthesia. Anesthesiologists may need to create a special protocols, for example, avoiding histamine-releasing and muscle-relaxing drugs.

In addition, patients with ME may have undiagnosed or subclinical structural cervical issues such as craniocervical instability or cervical spinal stenosis. It may be important for some patients, if at all possible, to have their head and neck kept in a neutral position during surgery to help limit the risk of exacerbation or damage. This is especially important for patients with hypermobility, Ehlers-Danlos syndrome or Postural orthostatic tachycardia syndrome.

 Handouts

• Advice for PWCs Anticipating Anesthesia or Surgery (Hunter Hopkins Center)

Recovery

Patients with ME will benefit from environments where they can sleep and have minimal disruption. Patients can benefit from:

• Sound-tight rooms (as opposed to open curtains) and rooms that can be made completely dark
• Placement on a quiet ward
• Chemical/fragrant-free nursing support

• Minimal nighttime disruptions (e.g., middle of the night blood pressure monitoring) if possible, depending on their medical condition; minimal daytime disruptions of patients with circadian rhythm sleep disorders such as delayed sleep-wake phase disorder (reverse sleep cycle)
• Extra IV saline, particularly for patients who are diagnosed with POTS, have low blood volume, and/or have prior experience with saline.

It may take patients longer to recover and this should be planned for in advance. For example, if a procedure requires a one night stay for recovery, a patient with ME might need two.

Mobility aids

Patients with ME may have unusual and unpredictable needs for mobility aids, especially in an emergency context or after surgery. For example, a patient who is usually ambulatory may find it difficult to walk (due to post-exertional malaise) or to maintain an upright posture (due to orthostatic intolerance). In this case, a wheelchair can be very helpful. A patient who is usually in a standard wheelchair may require transport via a reclining wheelchair or a gurney.

In addition, after surgery, patients who are having difficulty sitting upright or walking should be offered a bed pan or in-room commode, even if they don't usually need these devices at home.

See also

• Guide for patients having surgery

See myalgic encephalomyelitis.

Physical, mental, and behavioral changes that follow a 24-hour cycle, responding mostly to light and dark. Controlled the brain's hypothalamus. (Learn more: www.nigms.nih.gov)

circadian rhythm Physical, mental, and behavioral changes that follow a 24-hour cycle, responding mostly to light and dark. Controlled the brain's hypothalamus. (Learn more: www.nigms.nih.gov)

See postural orthostatic tachycardia syndrome.

postural orthostatic tachycardia syndrome (POTS) - A form of orthostatic intolerance where the cardinal symptom is excessive tachycardia due to changing position (e.g. from lying down to sitting up).