21 Year Old Dies of Taboo Illness: Myalgic Encephalomyelitis

Ten days after celebrating her 21st birthday, Merryn Croft died of Myalgic encephalomyelitis(ME), also referred to as chronic fatigue. ME is a neurological disorder that affects multiple systems in the body, which results in profound tiredness. Merryn, a native of  Norden, Rochedale, first experienced the symptoms of CFS aka chronic fatigue syndrome at 15. At that time, her feet, hands, and face began to swell. Initially, the doctor diagnosed her condition as an infection and gave her antibiotics. Instead of healing, Merryn began to suffer from extreme fatigue.

Merryn’s mother Clare, resigned from her job as a counselor in order to take care of her daughter, who was a student at  Oulder Hill High School at that time.

“She would come home from school, crash on the sofa, and sleep for six hours,” said Clare. “It was like watching a wind-up toy run out of power and it just kept happening more and more.” When Merryn’s condition did not improve, the doctors dismissed her concerns and suggested she undergo a mental health assessment because they believed her problems were psychological. Medical science has come a long way thanks to the advancement of information technology. However, there’s no question that there are still health puzzles that have yet to be “solved” and given an official stamp of diagnosis by medical practitioners. Unfortunately, when researchers haven’t caught up, and doctors aren’t properly educated about lesser-known conditions, many patients’ lives can pay the price as Merryn Crofts did.

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Merryn’s story

More than 17 million people worldwide suffer from ME. What’s really disheartening about Merryn’s story is that even though her condition was fairly common, the disease has a negative taboo, with many medical experts believing that the illness is fictitious. When Merryn realized the doctors were not taking her seriously, she researched the clinical symptoms of ME and brought it to the attention of physicians who dismissed her. Finally, in 2012, Merryn’s suspicions were confirmed by a specialist, who worked at a private clinic.

After the official diagnosis, the 21-year-old experienced severe symptoms such as sensitivity to light, noise, touch, stomach cramps, joint pain, and convulsions.  The pain was so intense that she had to take ketamine and morphine. Her infection resurfaced and Merryn decided against hospitalization because she felt there was no point. Merryn succumbed to her illness soon after. Her family donated her brain and spinal column to the Ramsay Research Fund for research. Our hearts go out to Merryn’s family for having to suffer such a tragic and unnecessary loss- only to have their loved one’s pain dismissed and ignored.

What is ME?

Early signs often appear after a viral infection such as flu or other upper respiratory illnesses. However, ME can also be caught through non-viral illnesses like chemical exposure.

Extreme fatigue Symptoms include: 

• Fatigue and weakness
• Sickness
• Cognitive dysfunction
• Headaches
• Vision abnormalities
• Neck pain
• Muscle weakness
• Bladder and bowel dysfunction

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Who does it affect?

Limited studies show that 1 million people in the US are affected by the disorder every day. More women than men catch and suffer from the disease and anyone regardless of race can catch it. Both men and women (mostly women) are likely to suffer from the disease between the ages of 30-50.

Is there a cure?

So far, there is no permanent cure for ME. However, certain measures can be taken in order to make things slightly easier for those who suffer from the diagnosis.

Natural Treatment for ME/Chronic Fatigue Syndrome can Include:

• acupuncture
• meditation
• magnesium supplements
• find and eliminate food sensitivities/ food allergies
• the candida diet
• vitamin B6 and B12 supplements
• calming massages (try with essential oils)

Further research also shows that a treatment process called energy envelope theory is a potential alternative to help those who suffer from the condition to maintain it. There is no medication for the individuals in question as the key to this treatment is to learn how to carefully regulate and differentiate between energy expended and energy available so that it does not worsen the condition further. As demonstrated through the example of Merryn Crofts, more research and awareness needs to be brought to ME, so that people who end up diagnosed with this disorder are prepared to take the appropriate steps.

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