‘Doctors must start to believe us’: this is what Sajid Javid, what ME patients say, must change.

When Gigi Joseph-Garrison was 16, she was hospitalized. Since she could barely move and could not eat, she was given a lactation tube. The doctor assigned to her case told her that she had an eating disorder. But she believed the diagnosis was wrong.

Joseph-Garrison, now 20 years old, has developed muscular encephalomyelitis (ME), also known as chronic fatigue syndrome or ME/CFS. When she first went to the GP about it she did some research online and then she actually suggested an ME diagnosis.

From that point on, she quickly deteriorated. “It went from a very light ME to an extremely serious ME. I couldn’t eat at all, it was just too much energy,” she says. A, who turned 20 at that time, was admitted to the hospital.

The doctor, who had already been misdiagnosed as an eating disorder, tried to amputate Joseph-Garrison, claiming that ME was a mental illness, not a physical one. “It was the worst thing I’ve ever experienced,” she says.

She suffered from photophobia (sensitivity to light), which is common in people with ME. “It was a burning, terrible pain that lasted for hours to the end,” she says. “[The doctor] I was forced to sit down and my body was so weak that I couldn’t do it easily.”

He also directed the physical therapist to see her twice a day. “It worked like crazy for someone who just needed a break,” she says. “She could have killed me.”

Joseph-Garrison had to spend time in the hospital because of ME.

Her mom raised awareness about her daughter’s situation on Facebook, and the ME community eventually came to the rescue. Her local councilor intervened and she was assigned to another doctor.

“The ME community is amazing,” she says. “They saved my life.”

Joseph-Garrison is one of approximately 250,000 people in the UK and 15-30 million people worldwide affected by ME. The NHS defined this chronic disease as ‘a long-term condition with a wide range of symptoms’, and named ‘extreme fatigue’ as the most common symptom.

The ME Association describes it as “a complex multi-organ disease with widespread disabling symptoms”. According to the NHS, it is more common in women and tends to develop in the mid-20s to mid-40s.

Historically, patients with ME, such as Joseph-Garrison, suffered from a misunderstanding of the disease by doctors, treating it as a mental illness rather than a physical one, despite the World Health Organization (WHO) now classifying ME as a neurological disease. I did. However, there are signs of a change recently.

Health Minister Sajid Javid has pledged to lead a pan-government initiative on ME. When he released the National Congress Group (APPG) report, Rethinking ME, last May, he spoke about a young relative who was struggling with the condition. “I am working to better care for and support the people I live with and their families,” Zavid told Congress.

This document, summarizing the report’s objectives, says, “to improve the health, social well-being, education and employment opportunities of patients with ME, and to promote biomedical research into the causes and treatments of ME.”

The long-awaited update of the National Institute for Health and Care Excellence (Nice) guidelines also went into effect in October 2021. Nice is a non-administrative public agency of the UK Ministry of Health and Social Services.

There is currently no cure for ME. Previously, patients were given cognitive behavioral therapy (CBT) and graded exercise therapy (gradual increase in physical activity). CBT is now being proposed not as a cure, but as a way to help people deal with the psychological effects of the disease.

Sarah Yeh developed ME after giving birth to her son and has suffered from the condition for 13 years. When she first went to her GP with extreme fatigue and symptoms of brain fog, they told her it was her postpartum depression. “They basically ignored me,” she says. “I didn’t believe it in the first place.”

After giving birth to her son, Ye’s symptoms were misdiagnosed as postpartum depression.

Yes was diagnosed with ME after personal assessment. Like many ME patients, Yeh was recommended graded exercise therapy, which made her condition worse.

“I was able to walk a little from the house and got into bed. I never fully recovered. I have to use a wheelchair when I go out.”

Ye had to quit her job and apply for Disability Living Allowance (DLA) and Individual Independence Allowance (PIP). “I had to go to court because they didn’t believe me. The distrust of the disease was so great that the tribunal tried to dismiss it when the doctors there said it was a mental health problem.”

Yeh says Sajid Javid’s comment on ME “shows a big shift in what we’ve seen so far,” but she’s not entirely sure things will change. “I’m worried if this is just lip service,” she says. “How much money will the training cost? How much money will you spend on education? I’m a bit skeptical until an actual budget is allocated.”

Joseph-Garrison is also wary of arousing hope for change.

“It’s helpful for someone like Sajid Javid to say that ME has been branded for years. Because we, as patients, are not the only ones who say that,” she says. “What has to change is that ordinary doctors have to start trusting us. Until that happens, we are ruined.”

The lack of education on ME for both healthcare professionals and the general public means that the disease is often misunderstood. Lior Smith, 32, was officially diagnosed with ME one year after showing symptoms. She says she’s unusual for her in that her doctors she saw her didn’t fire her.

“People can be bitter and scornful of me,” she said, including the rest of the public. “People say: You are too young to be ill, too young to be disabled. The taxi drivers told me that you are too pretty to be disabled.”

Smith hopes someday a vaccine for ME will be found

Smith is a bit wary of new government initiatives, but is mostly hopeful. What does she think real progress will look like?

“For me, it’s about therapy or therapy. It would be amazing if we could find a vaccine for ME as well as prevention.” She hopes that all the plans of the current government will be passed on to the next government.

“It won’t take a year to find a cure for ME. There will be important work to be done.”

ME Association’s Medical Advisor, Dr. Charles Shepherd believes that government initiatives should be a turning point. “The old culture of negation, ignorance, and neglect toward me must disappear.” He says the publication of the APPG report and the comments of Sajid Javid “cannot be ignored”.

Along with the implementation of Nice guidelines and education for health professionals, Shepherd says there is a need for “strong government funding for biomedical research into the causes and treatment of ME on par with other neuroimmune diseases.”

People living with ME have their lives changed due to chronic illness. Patients often have to give up work and education and rethink their plans for the future.

Joseph-Garrison has two carers and was unable to continue her education beyond GCSE.

“I am ambitious,” she says. “I want to be a writer. I want to be a dermatologist, but my aspirations and stamina are not the same,” she said.

She misses things that people without debilitating disease take for granted. “I miss the sun. I miss my friends. I miss the comfort of getting out of bed in the morning.”

Joseph-Garrison hopes to become a writer or dermatologist.

Giving up a career was very difficult for both Yeh and Smith. Yeh says her son is absent due to her illness, but uncertainty about the future is something Smith thinks about a lot.

“Most people have traditional hopes and dreams, have children, and have jobs and families. It’s very basic, but I don’t know if I’ll ever be able to have a child because I’m barely taking care of myself. How can I take care of the children if I am having a hard time clearing the trash cans?”

Despite her difficulties, Smith tries to have hope. “I want to live long. I did not choose this disease. I have so much to offer.” Her hope is that people will start to understand the condition and see the strengths that ME patients have.

“There is a lot of wisdom we can learn from people living with chronic conditions – from friends who can help us or create art while managing our ill mood at every moment of the day.”

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