Myalgic Encephalomyelitis (M.E): Living with the invisible illness

I am really lucky to have had such a solid support network from my family. My mother, Katy, gave up working to look after me throughout the uncertainty when I was first poorly. I was in and out of London going to hospital appointments with different doctors in the hope that one of them would have the answer.

This disease took the same years from my mother as it did from me, but she would never say that it did.

She was labelled an 'overprotective mother' by one of the first doctors we saw and was told that I would be fine if she just stopped worrying so much. He completely dismissed me, my family and my condition.

Despite the fact it is a decade later and my health has improved since then, my mother and I still found this interview difficult to do. Bringing up the emotional turmoil that my mother had to go through whilst fighting for my condition to be taken seriously was very moving for her. My parents noticed very quickly that there isn't enough support for parents of children with chronic illnesses within schools.

I asked her what she thought needed to be done about this.

Dr Charles Shepherd can explain this condition much better than I can. He has both professional and personal involvement with M.E. He works with the ME Association charity as a medical advisor and has also been part of the NICE (National institute for Health and Care Excellence) guideline committee fighting for research.  

Part of why Dr Shepherd has such a brilliantly acute understanding of M.E is because of his personal experiences with the condition. Whilst working in Cirencester Hospital as a resident medical officer, he developed chicken pox after treating a patient with the shingles. After being previously fit and healthy, his body was unexpectedly struck down by the chicken pox, leaving him depleted. He never fully recovered as he was working long hours whilst his body should have been recovering.

Image copyright: Dr Shepherd

"I went through a lot of yo-yo business going back to work and being off sick." He admitted.

The problem was that he had been managing the illness incorrectly, unaware of what was wrong, and had been inadvertently making his condition worse. It took two years for Dr Shepherd's diagnosis.

Who does M.E affect?

This disease does not discriminate. It affects men, women and children of all ages. Interestingly, research from DecodeME in 2023 indicates that women make up 83.5% of M.E patients. It is unclear as to why it is more common in women but there is speculation that hormone levels (in estrogen and testosterone) could have some impact.

DecodeME has carried out one of the largest studies of the condition. It took data from 17,000 patients who filled out an anonymous questionnaire. It shows women generally experience more symptoms than men and have more co-occurring conditions. 

Tracy has moderate to severe M.E. She was diagnosed in 2018 but first became ill with the viral infection that triggered her condition four years previously. When Tracy noticed she didn’t fully recover from her infection, she consulted the GP who diagnosed her with post viral fatigue syndrome.

As a mother of a child with complex needs and severe autism, she put her son’s health first and forgot about her own health needs. It was only when she attempted to take on a greater workload that her health took a serious decline. It led her to take medical redundancy, as an intelligent woman who enjoyed her job, this was an incredibly difficult decision to make.

I asked Tracy to briefly summarise some of her symptoms day to day which also coincide with her description of a "crash". Crashing occurs after doing even the most simple tasks, things that would be completely mindless and insignificant to somebody without this condition, yet truly depleting for those with it.

From just listing the symptoms, I noticed that this was a draining activity, and Tracy agreed with me. This gives you an idea of the relentlessness of the cognitive disturbance Tracy suffers from. This audio clip is only a small segment of what Tracy has to endure each day.

Maddie was initially diagnosed with fibromyalgia, a condition causing muscular pain all over the body. It can be treated with lifestyle changes, such as increasing your strength with exercise. This is exactly what Maddie did, she began working with a personal trainer, unbeknownst to her that this high level activity was worsening her undiagnosed M.E beyond repair. Because of the crossover in symptoms, Maddie’s M.E wasn’t recognised initially, leading her to be recommended treatment that wasn’t tailored to both conditions.

Maddie began to well up when talking about hindsight being a powerful thing in relation to the unknowing pressure she put on her body, not knowing she had M.E on top of fibromyalgia. Maddie exudes a sense of stoicism that you either have or you don't. Her pragmatic approach to dealing with her constant mental battle of 'what could've been' was deeply moving.

Image copyright: Maddie Walker

Another example of Maddie's remarkable pragmatism is that she fought for a second diagnosis because she knew that something was wrong. She persevered with work for three years, trying to find the perfect balance of work hours and fortunately, her employers were flexible when working around her condition. She got down to 21 hours a week but it was still too much for her body, meaning she was forced to sacrifice work for the sake of her health.

As somebody that adored her job and, much like Tracy, is very career driven, ambitious and intelligent, being robbed of that freedom to work was devastating for Maddie.

Before having to leave her job, Maddie sought out Bedford Chronic Fatigue Service and had an assessment with a pyschologist and occupational therapist. She could do about 20 minutes of cognitive work without it fatiguing her so she was directed to increase the amount by 10% every two weeks.

"It was a huge shock to me because I suddenly realised how long it would take me to be able to do, say, two hours of work a day."