21 Year Old Dies of Taboo Illness: Myalgic Encephalomyelitis

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Medical science has come a long way thanks to the advancement of information technology. However, there’s no question 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 patient lives can pay the price. One recent case is of 21-year-old Merryn Crofts, who died just 10 days after her 21st birthday in 2017 after suffering from an illness her doctors refused to accept: myalgic encephalomyelitis (also known as chronic fatigue syndrome).

Myalgic Encephalomyelitis Case Study

Merryn Crofts hailed from Norden, Rochedale and attended Oulder Hill High School. Prior to her death, Merryn suffered from myalgic encephalomyelitis also known as ME, a neurological disease that caused her to be bed-ridden and suffer from excruciating pain. 17 million people worldwide are said to suffer from the disease.

What’s really disheartening about her story is that even though this condition is fairly common, it has a negative taboo labeled too it, with many medical experts believing there is no such illness and that it is all in the mind. Due to this, there is lack of research and awareness on the condition.

Early signs of turmoil came at the age of 15 for Merryn when her feet, hands, and face suddenly started swelling. Doctors had initially diagnosed her with an infection and as a result, gave her antibiotics to help completely get rid of the swelling. However, the opposite ended up happening in that Merryn started experiencing extreme fatigue.

Merryn’s mother Clare, who resigned from her job as a counselor in order to take care of Merryn full time, discussed Merryn’s after-school routine.

“She would come home from school, crash on the sofa and sleep for six hours. It was like watching a wind-up toy run out of power.” She further stated “and it just kept happening more and more.”

Merryn was then taken to doctors to undergo mental health assessments as doctors believed it was a psychological issue.

She did her own research and suspected that she suffered from ME, though when she brought it up to doctors, they immediately dismissed her theory. Merryn’s suspicions were finally confirmed by a specialist in a private clinic, who diagnosed her as having severe ME.  She was officially diagnosed in 2012.

After the official diagnosis, other severe symptoms such as sensitivity to light, noise, touch, stomach cramps, joint pain, and convulsions took control of her body. She took ketamine and morphine to help ease the pain but had to stop after suffering another infection.

Photo Retrieved from Mirror

She was given the option of going back to the hospital but decided against it as she felt there was no point in doing so.

Merryn finally succumbed to her illness one night when she asked her mom to call her nurse. While waiting for the nurse, Merryn passed away.

Her family donated her brain and spinal column to the Ramsay Research fund in order for further research on ME to be conducted, as well as to get medical professionals to acknowledge it as the true cause of her death.

Our hearts go out to Merryn’s family for having to suffer such a tragic and unnecessary loss- only to have their love one’s pain dismissed and ignored.

What is Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis (ME) or chronic fatigue syndrome is a neurological disorder that affects multiple systems in the body and consists of numerous symptoms. 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.

Symptoms

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

 

  

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. Though, 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:

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 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.

Sources:

https://www.mirror.co.uk/news/uk-news/young-woman-dies-after-illness-12288945

https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/

https://www.nutritionist-resource.org.uk/articles/chronic-fatigue-syndrome.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596172/

http://www.ncbi.nlm.nih.gov/pubmed/20192908

http://umm.edu/health/medical/reports/articles/chronic-fatigue-syndrome

http://www.ion.ac.uk/information/onarchives/chronicfatigue

Images

https://www.mirror.co.uk/news/uk-news/young-woman-dies-after-illness-12288945 

 

The post 21 Year Old Dies of Taboo Illness: Myalgic Encephalomyelitis appeared first on The Hearty Soul.




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