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Letter for Medical Providers on Caring for People with Severe and Very Severe ME/CFS

Are you or a loved one bedbound or homebound as a result of severe or very severe ME/CFS, perhaps following COVID? Do you struggle to do basic activities like taking a shower or speaking to someone? Are you struggling to find a doctor who understands severe ME/CFS and how to manage it? One who understands the importance of in-home care and services? This letter is intended to inform medical providers about severe ME/CFS and may help you get the care you need.

By its nature, ME/CFS significantly impacts a person’s functioning. But severe ME/CFS can affect a person’s ability to do even the most basic activities of life. Signs you may be severely affected by ME/CFS include:

  • Being bedbound or homebound the majority of the time
  • Having such severe intolerance to being upright that you may have to lay down most or all of the day
  • Having such severe brain fog and other problems with memory and thinking that you may struggle to understand or communicate, even with your caregiver
  • Experiencing unrelenting, severe pain throughout your body
  • Being so sensitive to light, noise, touch, and smells that you may need to take extreme measures to avoid them, such as remaining alone in a darkened, quiet room
  • Experiencing a worsening of symptoms and functioning for days, weeks, or longer after even small exertions, such as a shower, light reading or watching TV, let alone leaving the house

At its worst, severe ME/CFS can be so debilitating that some people require total care by a caregiver. Severe ME/CFS can affect anyone of any age, race, gender, or social class.

Due to a lack of medical education and awareness, your medical provider may not be familiar with ME/CFS or understand just how severe it can be. They may believe you but not know how to help you or appreciate the necessity for clinical care in your home. Some may not know how to differentiate ME/CFS from a mental illness or they incorrectly interpret your symptoms as a somatoform disorder or depression best treated with exercise and talk therapy.

Whatever their current understanding, you will likely need to educate your medical providers about severe ME/CFS and the need for home care and services. Consider sharing with them this letter for providers, written by the authors of the 2021 article, Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Montoya et al). It summarizes the presentation of severe ME/CFS and how to evaluate and manage the illness, emphasizing the importance of home care and services. Those with severe Long COVID may benefit from these recommendations as well, even if they do not meet criteria for ME/CFS.

And, if in spite of your efforts, your doctor still does not believe you or is unable to provide the care you need, it may be time to find a new provider.

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