Severe ME: ‘Took nearly 40 years to be diagnosed’

by Sasha Nimmo

Between 24,000 – 60,000 Australians have severe ME.  This is the first in a series telling the stories of Australians with severe ME.

Given the wrong medical treatment and intervention harmed this patient’s health to the point of no return. Disbelief by medical professionals and community care workers made life even more difficult. This patient fears further mistreatment so asked to maintain anonymity.

Above is a picture of Basil, an affectionate miniature fox terrier and company during difficult times.

Even after so many decades of illness, this patient still holds hope in medical research and participates in studies at Griffith University’s National Centre for Neuroimmunology and Emerging Diseases, one of the few places studying severe ME.

This patient shares their story with us.

What was your life like before you became ill?
For me, it is not a straight forward answer as I have had mild ME since I was a child and went through flare ups and remissions. I was diagnosed with Dysautonomia and Orthostatic Hypotension as a child (which are very common symptoms with ME), although there was no treatment nor any follow up. The internist told us I would grow out of it. In other words, I just had to live with it.

So, I read the question as “what was my life before my ME progressed to severe”. I was working as a full time manager at a small accounting firm. I was an associate member of CPA Australia (it is a professional body for public accountants like RACGP is a professional body for doctors), so was also undertaking CPA Program (post graduate equivalent study) in order to advance to CPA.

How long did it take for you to be correctly diagnosed and how did that affect your health?
Diagnosis is a tricky part of my ME history…

Unlike majority of severe ME patients (but, common with NCNED’s research subjects), it was gradual onset.

My mild ME from childhood ME was never diagnosed. Since my ongoing fatigue and unwellness were never taken seriously. My fatigue was getting seriously worse when I was around 36, it got to the point I was bed resting when I wasn’t at work, and my fatigue was getting worse despite of the rest.

My in-laws then, pushed me to see their GP about it. It was misdiagnosed as depression and its treatment started. My fatigue became dramatically worse with the treatments and I also started having other symptoms. I became bedbound within two years. They still refused to review the diagnosis. One GP finally referred me to a rheumatologist (to keep me quiet, I think.) The GP ridiculed me, saying that depression can have fatigue, and also ridiculed me when I told her that I was not doing house work…

There was a few months wait to see the rheumatologist. He diagnosed it as Chronic Fatigue Syndrome. He prescribed intense exercise and anti-depressants even I told him I was bedbound and couldn’t tolerate anti-depressants. I couldn’t go back to see him. I couldn’t force anymore willpower, that was completely used up with GET and CBT (to be active when I feel fatigued).

I feel rheumatology is the wrong profession to diagnose Chronic Fatigue Syndrome, but apparently, it is the only specialist for Chronic Fatigue Syndrome in Queensland. So, if I need a medical certificate to have government financial assistance for electricity costs for using air conditioning, I have to see him. (I wouldn’t see him again because I don’t want to go through the traumatic experience anymore.)

When I started participating in research into severe ME/CFS by National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Griffith University, they stated that I have severe Myalgic Encephalomyelitis (ICC). Since there is no official ME diagnosis in Queensland and I feel Chronic Fatigue Syndrome doesn’t match my sufferings, I strongly prefer it as ME (ICC) that is more aligned with my suffering and symptoms.

I was around 45 when research was transferred to Griffith Uni (from Bond University) and NCNED established. So, I could say it took nearly 40 years to be “correctly” diagnosed.

If I have to submit medical certificate of Myalgic Encephalomyelitis (ICC) for some legal reasons, my GP will prepare it with collaboration with NCNED.

Not having it diagnosed early, I missed the opportunity to recover from it. As they say, the longer you have it, the less possibility of recovery. Also, not correctly diagnosed it and underwent the wrong medical treatment and intervention (anti-depressants, GET, CBT) harmed my health to the point of no return.

Living on your own with severe ME, how did you manage a household, looking after Basil and getting to appointments?
My life was in survival mode. It was not to live, but to exist.

I did things only when I could (mostly after midnight). I slept with the flow, so that I could have some useable energy during late night to early morning, if I was careful.

I couldn’t take rubbish bins out weekly. I often couldn’t take them more than a month. Sometimes, I started collapsing by the attempt.

I did laundry only once or twice a month. I hang them on a portable airer indoor.  I was in the same clothes day and night.

Cleaning was really tough. My place didn’t get messy since I was in the bed all the time, but I had problems with dust and mould. Interval of midnight cleaning was getting longer, and the PENE from the efforts got worse each attempt. In the end, I had to hire a monthly commercial cleaner and my long distance friends kindly paid for it. (They said that they would help clean it if they lived close to me. They said it to make me not feel guilty about it.)

My closer distance friend occasionally drove all the way to help me with grocery shopping before Coles and Woolworths Online Shop started delivering to my area. But, it was very long drive for her and I didn’t want to depend on her kindness since she really don’t have any obligation to help me. I also felt guilty for causing such inconvenience for her. After a while, things got very awkward between us.

Before Coles and Woolworths Online Shop, I also bought non-perishable food online and fruits from online outlet. It was expensive and not much choice, though.

Since most of pension went to rent payment, my weekly food & grocery budget was $60 including delivery fees.

I bought ready to eat or ready to use food, such as frozen vegetables and pre-washed salad leaves. When I cook, my priority was quick and easy (and easy to clean).

There was a local surgery close to my place. It was an easy 2 minute drive. My friend took me there the first time because I didn’t have courage to go there since I was traumatised by previous medical professionals.

I often started collapsing or sometimes got into paralysed state while in the waiting room. It was a scary experience as I was just by myself and the staff didn’t understand the distress I was in. When I was paralysed, I looked at the staff hoping she would come and help me. But, she misunderstood me and avoided me. A patient next to me heard my whisper that I couldn’t move, then he shouted for me. While I lie and recover from orthostatic distress, my body starts myoclonus, shaking, jerking, twitching. After a while, I learned to ask for a place to lie down before I completely collapsed. Sometimes, I lay in the car to rest until I got enough strength and cognition back to be able to drive back home.

In the end, I was unofficially dismissed from the local surgery and became an orphan patient… It was a very distressful experience.

It took for a very stressful and traumatic search to find help. I became a patient of a ME/CFS friendly doctor at a private clinic with my friends’ suggestion and secured community care to take me to the appointment.

Basil (pictured) was the only reason I tried to exist. Keep him happy was the only purpose in my life and he provided me with a lot of comfort. I lived in a house with a large yard, which was enough for a little dog. I was lucky that Basil didn’t require any veterinary service, although I felt guilty for not being able to give him preventable healthcare.

What has been the most difficult part of the illness?
I was not believed that I have been very ill. I couldn’t find the help that I desperately needed. Healthcare professionals and community care workers judged me without knowing me. They mistreated me, treated me as nuisance, attention seeker, drama queen, liar, stupid, and patronised me when I desperately needed help.

There is no effective treatment.

No one understand what is ME and didn’t want to know about it.

My gratitude was misunderstood.