A Teacher in the UK With Myalgic Encephalomyelitis was Advised to Exercise for Rapid Recovery

 

Many in the medical profession believed that the road to rapid recovery in myalgic encephalomyelitis was through exercise.

Eighty-two-year-old Veronica Jones of Gloucestershire, UK believes that the advice given to her and others in 1996 delayed recovery for thousands of patients and caused her to spend the rest of her life confined to a wheelchair.

Veronica, a former teacher, recently described her illness to Gloucestershire Live.

Veronica explained that in 1996, she came home from her teaching job with a sore throat that was the beginning of a virus infection.

Veronica had not fully recovered from the virus when she and her husband decided not to cancel the plans they had made for a holiday. Veronica believed that she should take advantage of some sunshine and at the same time, she could follow the wisdom of the moment and become more active.

Today she regrets that advice. Veronica now understands that she was suffering from post-virus fatigue. Exercising prior to full recovery led to her developing myalgic encephalomyelitis (ME) also known as chronic fatigue syndrome.

While on holiday with her husband, her condition worsened. When she returned home, she noticed that daily chores or trips to the grocery store were becoming almost impossible. By the time she was 58 years old, one year after the onset of the disease, she had to depend on a wheelchair for mobility.

Veronica’s family members do not leave near her. When they do visit she has trouble participating in conversations which makes their visits stressful.

About ME

According to Veronica, it is a disease that comes with the stigma that people who have the disease are indolent and are not trying to improve. She states emphatically that this is not true. She describes it as a malaise such as not being able to charge your own batteries.

 Myalgic encephalomyelitis has a number of symptoms, with the most common symptom being extreme fatigue. Most patients are still fatigued even after resting.

Other symptoms involve sleep disturbance and being extremely tired after physical activity. Patients may have trouble with their thought process, memory, or concentration.

Still, Reasons to be Grateful

Veronica manages to find reasons to feel that she is fortunate. She loves looking at her garden and realizes that some ME patients cannot tolerate lights or sound, and others are unable to swallow.

Looking Back

At this time in her life, Veronica is looking back at all the things she wished she had done. She loves flowers and wishes she could manage the steps down into her garden. She wishes she had been able to travel. Veronica does, however, have a goal and that is to raise awareness of ME.

May 12th was Me/CFS International Awareness Day. Veronica says that she has been trying to raise awareness for years. She describes ME as akin to being on a tightrope. It is catastrophic if you lose your balance.

Locally, in Veronica’s town, an ME support day was held on May 7th at the Quedgeley Village Hall to provide information about assistance for ME patients.

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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