For a long time, Catherine Allen went without a diagnose to explain the myriad of symptoms that she experienced. Doctors dismissed her experiences as common feelings in teenagers, when in reality Catherine has myalgic encephalomyelitis (ME), or chronic fatigue syndrome. Diagnoses are important as they can they help doctors figure out a course of treatment, and in Catherine’s case, they ensure that the symptoms were not “all in (her) head.” With a diagnosis she has been able to better manage her symptoms, and those around her are prepared to help her as well.
About Myalgic Encephalomyelitis (ME)
Myalgic encephalomyelitis (ME), or chronic fatigue syndrome, is characterized by unexplained, chronic fatigue. This tiredness does not improve with rest, but it can worsen with physical or mental activity. People with this disorder have difficulty with tasks that used to present no problem to them. Maintaining a job becomes difficult due to the constant exhaustion, and people with ME often change their lifestyle to compensate for this fatigue. While anyone can have ME, it is most common in females aged 30 to 50. This is an invisible illness, and it is underdiagnosed due to the lack of education and awareness.
The cause of ME is unknown, but there are many speculations. Triggers such as viral infections, hormone imbalances, genetics, and issues with immune system are all possibilities.
Symptoms of chronic fatigue syndrome vary between those who have it. Some symptoms can come and go, never show up at all, or change with time. They include intense fatigue that is not helped with rest, the inability to do simple activities due to this fatigue, low stamina, being confined to bed, dizziness, blurred vision, worsening of symptoms after activity, brain fog, issues with sleeping, muscle or joint pain, headaches, sore throats, swollen lymph nodes, depression, bowel dysfunction, and worsened symptoms from standing or sitting up.
After noticing these symptoms, one should see a doctor. While there is no specific method of diagnosis, there should be a thorough examination of medical history and symptoms. There must also be a comparison between life before and after the patient got sick. Diagnosis tends to come after the exclusion of other conditions, as fatigue is a symptom common to many disorders.
Treatment for ME depends on lessening the symptoms. Doctors recommend that people with chronic fatigue syndrome avoid overexertion, establish healthy sleeping habits, manage their pain, receive physical and cognitive therapy, take low doses of antidepressants, and change their diet if necessary.
Catherine was diagnosed with ME in 2017, while she was a student at Worcester University. Her diagnosis came after a long road of being dismissed by other doctors, who told her that her symptoms were common to all teenagers. It was not until she visited a specialist at an ME clinic at the Seacroft Hospital in Leeds that she was given the diagnosis of chronic fatigue syndrome. Catherine describes the extreme relief she felt when she was finally given a diagnosis, as it let her know that there was a reason that she felt so exhausted all of the time. Her diagnosis has also helped her, along with her family, understand what she can and cannot do. She says that an understanding of ME has allowed her family to better support her. Catherine states that while chronic fatigue syndrome does make daily activities difficult, she is a “very positive person.”
As there is no known cause of ME, there are also limited treatments for it. Treatment is symptomatic. Fortunately the ME Association is working diligently to improve access to information, treatment, and research. They have put £200,000 towards three new research programs in the hopes of improving treatments for those with ME.
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