May 12th is International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day, a day to recognize and support individuals living with this illness as well as advocate for further research on both a cause and a cure. Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a complex and debilitating health condition that’s gaining more recognition as medical science advances. Keep reading to learn more about the history of chronic fatigue syndrome, and how occupational therapists can help improve the likelihood of a full recovery.
The History Of Chronic Fatigue Syndrome
Medically recognized as early as 1934, this disease was once confused as an atypical form of polio, which speaks volumes to the severity of its symptoms. In fact, Florence Nightingale, a profound figure in medical history and considered the founder of modern nursing, is suspected of living with CFS.
Nightingale’s birthday was chosen to recognize chronic immunological and neurological diseases like CFS, which is why the ME/CFS and fibromyalgia international awareness days take place on May 12th. Furthermore, to honor her advocacy for the nursing profession and recognize her struggles with CFS, in 1988 a Canadian ME/CFS foundation was named after her: The Nightingale Research Foundation.
What is the Color for Chronic Fatigue Syndrome Awareness?
International ME/CFS day is recognized by wearing and displaying the color blue.
How is CFS Diagnosed in Patients?
CFS is a serious, long-term illness that leaves many patients bedridden and housebound. In order to be diagnosed with chronic fatigue syndrome, three primary symptoms must be apparent:
- Post-exertional malaise (PEM) or the worsening of symptoms following minor physical or mental exertion. This is often described as a “crash” or “collapse” and may display as mental fog, headaches, dizziness as well as severe tiredness.
- A six month history of severe fatigue that has affected the patient’s ability to perform their usual activities.
- Issues with sleeping, from difficulty falling and staying asleep to waking up after a full night’s sleep and not feeling rested.
In addition to these main three symptoms, one of these other symptoms must be apparent as well:
- Cognitive issues such as trouble thinking quickly, memory issues and paying attention to details.
- Orthostatic intolerance, or the worsening of symptoms while standing or sitting upright. This may display as dizziness, weakness, vision issues or even fainting.
Due to the number of other illnesses that display similar symptoms, a patient is often not diagnosed until other health conditions are ruled out, which can become a lengthy and costly endeavor. Patient advocacy is essential to cutting costs and pursuing quality care as soon as possible. Keep reading to learn more about support resources available to those seeking diagnosis!
Recent Discoveries
Research has proposed that the cause of ME/CFS is related to mitochondria, the organelle that supplies energy in a cell. Since the mitochondria itself does not appear to be mutated or faulty, it is speculated that this is likely not a disorder of the mitochondria, but rather something else inhibiting the organelle from fulfilling its function.
Additionally, the Centers for Disease Control and Prevention (CDC) has remarked on the similarities between ME/CFS and long COVID patients.
Is Having CFS a Disability?
There are individuals with CFS who are able to hold a job, especially if their employer provides accommodations. However, there are many others who are unable to work at all and may need to look into disability benefits to help cover living expenses and treatment.
The disability application process can be frustrating and confusing, but it doesn’t have to be! Reviewing the process on the Social Security Administration (SSA) website before applying can help patients prepare thoroughly, from acquiring all of the needed documentation from their healthcare providers to gathering evidence of employment history.
Here is a quick rundown of what someone with chronic fatigue syndrome may expect after applying for disability benefits:
- Interviews and forms to help SSA determine the severity of CFS
- Time-sensitive mail correspondence requesting additional documentation
- Information requested from family members
- Possible denial of benefits
It’s common to need to appeal a decision and the SSA offers several methods to do so. Many patients opt for legal representation for the appeals process, but it is not a requirement.
Occupational Therapy Treatment for CFS
Over the years, CFS treatment has evolved as more research has determined what is helpful and what can be harmful. For example, Graded Exercise Therapy was recommended as a way to slowly build up strength and energy, but has since been proven to worsen symptoms. Now treatment heavily focuses on improving quality of life, a primary function of occupational therapy.
Pacing is a popular technique in use today. Under the instruction of an occupational therapist or even through guided self-help, patients with CFS first explore and define their current limitations, then structure their day-to-day life within those constraints. Over time, patients who have a good sense of their abilities may be able to expand the scope of their activities by strategically balancing rest and monitoring their efforts through equipment such as a pedometer or pulse oximeter.
Advocacy on International ME/CFS Awareness Day 2023
While there is still no cure for CFS, there are cases of patients recovering to a point where they can participate in activities of daily life again and even some instances where there is a near full recovery! By raising awareness for this condition, further research and resources can be allocated to the betterment of those affected.
In response to this severely underdiagnosed condition that affects potential millions, the CDC has created both a patient toolkit to help individuals advocate for themselves as well as a list of educational resources for the healthcare community. The chronic fatigue syndrome day 2023 theme has not been announced.
For occupational therapy practices that wish to get involved, there are several ways to raise awareness:
- Organize your staff to wear blue on May 12th
- Include CDC messages in your social media marketing and use the hashtag “#MECFSAwareness”
- Provide opportunities for occupational therapists to add ME/CFS training to their continuing education
For many with rare health conditons like ME/CFS, interacting with healthcare providers can be a stressful process. Make sure that your practice is ready to provide supportive and patient-centered care.
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