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Best practices for hospitals
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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. == General considerations == == Emergency room == == 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==== *[http://drlapp.com/resources/advice-for-pwcs-anticipating-anesthesia-or-surgery/ 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]] == References == [[Category:Guides]]
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