Devastating stories of hospitalization and medical emergencies of those with severe ME are being reported too often. Here's one such story via ME Centraal; it is feedback from a mother of son with severe ME: Acute Medical Emergency of Son with Severe ME'.
National guidelines for ME including information re severe/very severe/profound ME must detail appropriate care and handling of those within Severe ME ranges so that the patients can get the care they require without being harmed, mishandled and sent home in a worse state than before hospitalisation.
It is essential that guidelines include information about severe ME especially information about associated malnutrition, multiple sensitivities, paralysis, seizures, as well as cardio and autonomic/ respiratory/gastrointestinal/neurological/immune/energy production and ion transport impairment issues.
Until such guidelines exist we have a template for Personal Care Plan and another template, ‘My Needs Statement’ for anyone who wishes to include those in their medical file for potential hospitalisation or acute emergency visits.
These completed documents could be certified by your doctor before you include them in your medical file which you or your carer bring with you to a medical setting.
See links to those essential documents below:
and please find:
- Consent to Treatment Statement
- Emergency Room Info Sheet
- Letter to a hospital or doctor/consultant’s office to avoid a possible psych referral/ward stay
- Anesthesia Info for ME Patients
And more all via the link below
The Gurney Guide for Severe ME Transportation.
The level of disability that requires gurney transportation for someone with Severe or Very Severe ME and/or structural issues usually comes with extreme suffering. The inability to sit up accompanies myriad symptoms ranging from brain inflammation to unrelenting pain throughout the body.
Finding non-urgent transportation on a gurney (or stretcher) for a bed-bound person is not just challenging, sometimes it seems impossible.
Gurney Guide: - https://www.galenwarden.com/post/gurney-guide
Problems Due to Bed Rest
Via Wendy Boutilier further information which can be included to inform medics about your concerns with being permanently bedbound as a result of profoundly debilitating Severe ME.
ME patients severely affected can be house-bound or even bedbound for weeks or longer. Very severely affected patients experience profound weakness, almost constant pain, severe limitations to physical and mental activity, sensory hypersensitivity (light, touch, sound, smell, and certain foods), and hypersensitivity to medications.
These patients cannot make office visits, and require in-home assistance and management plans specifically adjusted to their needs by a coordinated care team of providers. Caregivers, who provide ongoing management and the majority of care for patients, are subject to substantial stress and may need additional support. Not only are these patients already extremely sick but being bed-bound creates a whole new set of health issues.
Prevention of Problems Due to Bed Rest
Staying in bed for a long time without regular physical activity, as may occur in a hospital, can cause many problems. See also Problems Due to Hospitalization here.
Blood Clots
A leg injury, leg surgery, or bed rest may prevent people from using their legs. When the legs are not being used, blood moves more slowly from the leg veins to the heart. Blood clots are more likely to form in this slow-moving blood. Blood clots in a leg (deep venous thrombosis) sometimes travel from the leg to the lungs and block a blood vessel there called pulmonary embolism. These clots can be life threatening.
Pneumatic compression stockings may be used to prevent blood clots. Powered by an electric pump, these stockings repeatedly squeeze the calves and move blood into and through the veins.
People at high risk of developing blood clots may be given an anticoagulant (such as heparin), injected under the skin of the abdomen or arm. Sometimes an anticoagulant pill is given by mouth. Anticoagulants help keep blood from clotting and are sometimes called "blood thinners."
Constipation
When people stay in bed or are less active, stool (feces) moves more slowly through the intestine and rectum and out of the body. Thus, constipation is more likely to occur. Also, people staying in the hospital may be taking drugs (such as certain pain relievers) that cause constipation.
To prevent constipation, staff members encourage people to drink plenty of fluids, and extra fiber is included as part of meals or as a supplement. Stool softeners or laxatives may be prescribed and may be continued after the person is discharged from the hospital.
Depression
Many people who have a serious illness and who stay in bed for a long time become depressed. Having less contact with other people and feeling helpless may also contribute to depression.
Pressure Sores
Staying in one position in bed for a long time puts pressure on the areas of skin that touch the bed. The pressure cuts off the blood supply to those areas. If the blood supply is cut off too long, tissue breaks down, resulting in a pressure sore (also called pressure ulcer or bedsore). Pressure sores can begin to form in as few as 2 hours.
Pressure sores are more likely to develop in people who
* Are undernourished
* Leak urine involuntarily (are incontinent)
Being undernourished makes the skin thin, dry, inelastic, and more likely to tear or break. Being incontinent exposes the skin to urine, which softens it, causing it to break open.
Pressure sores usually occur on the lower back, tailbone, heels, elbows, and hips. Pressure sores can be serious, leading to infection that spreads to the bloodstream.
If a person has difficulty moving, staff members periodically change the person's position in bed to help prevent pressure sores from forming. The skin is inspected for any sign of pressure sores. Pads may be placed over parts of the body that are in contact with the bed, such as the heels, to protect them. If a person already has pressure sores, a special bed that uses air to redistribute pressure may be used so that pressure does not remain on any one area too long.
Weak Bones
When bones do not bear weight regularly (that is, when people do not spend enough time standing or walking), bones become weak and more prone to fractures.
Weak muscles and stiff joints
When muscles are not used, they become weak. Staying in bed can make joints—muscles and the tissues around them (ligaments and tendons)—stiff. Over time, muscles can become permanently shortened, and stiff joints can become permanently bent—called a contracture.
A vicious circle may result: People stay in bed because of a disorder or surgery, resulting in weak muscles and stiff joints, which make moving (including standing and walking) even more difficult.
Prevention of Problems Due to Bed Rest
Steps to prevent problems related to bed rest may seem bothersome or too demanding, but they are necessary for a good recovery.
Moving as soon and as much as possible can help prevent most problems, including constipation. People are encouraged to get out of bed as soon as they can. If people cannot get out of bed, they should sit up, move, or do exercises in bed. Flexing and relaxing muscles in bed can help keep muscles from weakening.
For people who cannot exercise on their own, a physical therapist or another staff member moves their limbs for them. Furnishings, such as handrails, grab bars in the bathroom, raised toilet seats, low beds, and carpeting, can make movement easier.
For children, hospitals frequently have playrooms to encourage activity and to prevent boredom or depression.
Thanks to ME Centraal for the Mother's Story caring for individual with Severe ME
Thanks to Galen Warden for the The Gurney Guide for Severe ME Transportation.
Thanks to Wendy Boutilier for providing the Prevention of Problems Due to Bed Rest piece
