"At its most severe, CFS/ME can lead to individuals becoming housebound, a wheelchair user, or bedbound and dependent on carers for all basic activities of daily living," yet this group of patients in the UK has poor access to specialist care that may help, according to research published in BMJ Open.
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) affects over a million Americans, according to the Centers for Disease Control and Prevention (CDC), and affects four times more women than men, most often people in their 40s and 50s.
The CDC's CFS toolkit for health care providers says the syndrome, which has no cure, needs care that can be as complex as the condition itself.
The body gives this recommendation in the report: "The management of CFS may require working with a team of doctors and other health care practitioners, which might include mental health professionals, rehabilitation specialists, and physical or exercise therapists, to create an individualized treatment program."
Similar recommendations are laid down in the UK, says the new research: "Management of severe CFS/ME is difficult and complex and health care professionals should recognize that specialist expertise is needed when planning and providing care for people with severe CFS/ME."
Lack of face-to-face care
In spite of this health care framework, the study, led by a researcher who has had the condition herself, found that a "substantial proportion" of patients with severe CFS lacked access to "face-to-face, local specialist care, even when they live in an area with a CFS/ME service."
Clare McDermott, doctoral research fellow at the University of Southampton in the UK, had CFS when she was younger. Her research took the form of a questionnaire to all of the relevant health care providers, and the results show that a third provided no service at all for severely affected patients. An additional 12% offered occasional or minimal support. Dr. McDermott says:
"People with ME should be able to seek the advice of a specialist service close to their homes. We were surprised by the lack of services and access to services that our survey revealed. Even if [there is a local] service, some housebound patients will never get to use it. Many very ill patients are going without."
Jenny's success with specialist support
The authors of the research paper have been in touch with Jenny Patterson, a 20-year-old with CFS whose condition at its worst rendered her unable to get up out of bed except to use the toilet - she needed full-time care from her mother.
Getting through this, however, has been thanks to specialist care, Jenny says. From being completely bedbound, "she is now able to go outside for short periods of time and have visitors." Jenny adds:
"At its most severe, CFS/ME can lead to individuals becoming housebound, a wheelchair user, or bedbound and dependent on carers for all basic activities of daily living."
"My quality of life has dramatically improved from how it was 3 years ago. Being housebound is an awful and isolating feeling. What I am able to cope with during the day is now carefully monitored and my routines are very important to prevent a relapse."
She continues: "I have been very fortunate to receive specialist care in the past 3 years. My ongoing recovery and how well I am improving is down to them."
"Unfortunately most people with severe ME don't have any access to specialist services... Access to a specialist has undoubtedly changed my life; more people with this debilitating condition should have access to better care."
The research team has begun a study to evaluate a community-based intervention aiming to reach the most severely affected people with CFS.
Having worked for 2 years with over 40 people with CFS and their carers, including a central role for people with "first-hand experience of getting better from ME," the strategies have been devised to help the most vulnerable housebound people - results are expected in 2016.
The evidence for therapies against CFS has become established in recent years - talking therapy and exercise "are best for chronic fatigue" and chronic fatigue treatments led to recovery in trial.