Interview - Living with CFS!

Interview Diaries - Living with CFS/ME

Hello everyone, this is an interview about one person’s experience of ‘Living with Chronic Fatigue Syndrome (CFS)’ as part of our raising awareness for International ME/CFS Awareness Day, May 12th!

Our interviewee has requested to remain anonymous during this interview and because of the importance of this discussion about chronic fatigue syndrome, we are happy to accept.

Thank you for taking the time to answer our questions so we may better learn and understand what it is like for you living with chronic fatigue syndrome every day. It is our pleasure to find out more.

1. Can you tell us about how and when you were diagnosed with CFS? 

ME/CFS stands for myalgic encephalomyelitis / chronic fatigue syndrome.

My symptoms began in late 2022 and have since worsened, and I was diagnosed with ME/CFS in early 2023, by a GP. 

The diagnostic criteria for chronic fatigue is:

• More than 6 months of significant exhaustion

• Post-exertional malaise
  (This means that the symptoms are worsened by activity/exertion, causing a “crash” or a significant increase in symptoms. Triggering factors can range from physical, cognitive, or social activities, stress, and even extreme temperatures. Basically like getting burnout but from the simplest of daily activities. Continued overexertion can cause long-term worsening.)

• Unrefreshing sleep, difficulty sleeping, and symptoms are not fully cured by more sleep

• Brain fog/concentration and cognitive issues

• Orthostatic intolerance (Feeling light-headed/dizzy and other symptoms from standing quickly or being upright. Worse if I’m dehydrated, overheating, or haven’t eaten on time.)

There are many other symptoms, but as they vary so much person-to-person, they are not part of the diagnostic criteria. The severity is very different for everyone affected, ranging from a mild reduction in activity, to in extreme cases even being bed-bound and unable to move, talk or care for themselves.

Other symptoms for me, include:

- Frequent headaches (Especially in temples and behind eyes, but it can be the whole head, or occasionally even a migraine with aura. Worsened by eye strain and sinus issues. Sometimes it radiates to the whole head, and even can feel like tooth pain!)

- Circulation and temperature regulation problems: in hot weather this includes dizziness, blood pooling in feet, and lethargy, while in cold weather it can be joint and muscle cramps and aches, very cold hands and feet, and Raynaud’s phenomenon in the fingers. Hydration, compression stockings and clothing layers can help somewhat.

- Weakened immune system

- Digestion issues and bloating, air hunger, nausea, pain in the glands in my neck, shakiness and weakness, heart palpitations, hair loss, vision issues, chemical sensitivities, and many other seemingly random symptoms, with the worst being exhaustion.

2. How has CFS affected your life since then?
   Up until 2022, I was attending high school full time, achieving high marks, fully able to keep up with physical education, etc. with numerous future hopes and plans. In 2023 I attended the start of the school year, kept reducing my schedule, but eventually had to leave and was absent for the remainder of the year as I was too ill to continue in person. My symptoms have progressively worsened, and I am currently classified as having moderate ME/CFS.

This year I am attempting online schooling with a reduced workload, but it hasn’t been going well as I am struggling with the time, effort, and focus required, and assignments take far longer than they should otherwise. My friends are graduating high school this year, while I am unsure if, when or how I will finish.

Currently, going out is very difficult, and simply a busy morning (e.g., medical appointment, even lots of computer work) leaves me exhausted, weak, nauseous, shaky, wired-but-tired, and forced to rest. 

It was something we never expected to happen and quickly had a massive impact on my life.

3. What causes CFS and is it lifelong?

The exact cause is not known, however, many affected people have some idea what triggered it for them. 

This can vary, from a virus or infection such as COVID or glandular fever, prolonged stress or physical trauma (such as trauma, heatstroke, sleep deprivation or concussion), environmental factors such as mold (either acute exposure or living in a water-damaged building), heavy metals, toxic chemicals, and others. There are many other possible triggering factors, and it can often be a combination of factors that take a toll on the immune system and end up triggering it. It can also be linked to another related condition. 

It is not a condition you are born with, however, there may be a genetic susceptibility - an inherited higher chance of developing if exposed to certain factors.

Many other related conditions can have an overlap of symptoms or co-exist, and around half of long COVID patients comply with the diagnostic criteria for chronic fatigue. There is also a lot more awareness of and research into ME/CFS now too though, due to such a large increase in affected people because of long covid.

In my case, long term exposure to mould at home, which we were unaware of, was a major trigger, with symptoms eventually worsening to the extent we had to relocate multiple times and stay with family. Despite improving my symptoms this was tiring and disruptive. 

Some people recover or improve after only a few years while others can have it for decades. Often people are unsure what exactly helped them recover, but rest, pacing and avoiding triggers can be helpful (although certainly easier said than done 🙂). It is also common to get better and then relapse some time later.

4. CFS is an ‘invisible disability’ How can we help to support someone with CFS? 

Just being understanding about it I guess.

Energy/capacity can vary from day to day, and sometimes symptoms can be triggered or worsened by multiple different factors (like sleep quality, weather, exertion, foods, fragrances, light and sound, and multiple others). 

Might not look sick: and we only go out when we’re well enough 

Having to cancel, delay or modify plans is a very frequent issue with CFS.

Some doctors (including specialists!) don’t know a lot about it, nor do many people in schools, workplaces, etc.

As a teenager, I am lucky to have the support of my family, and also to not have the financial impact of being unable to work.

Common Misconceptions:

• It is not something you can just “push through” and it goes away (in fact, this can be very harmful). You wouldn’t try to run a marathon with the flu… I guess that's sort of what it feels like.
  
  

• It is certainly not fake, and not laziness, nor psychological, but in fact a serious neurological and immune condition.
  
  

• It is not improved by exercise - graded exercise therapy used to be the recommended treatment but it is now known it can actually be harmful due to post exertional malaise.

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ME/CFS can be described as being like. . . . 

“a battery which never fully charges and goes flat very quickly.” (Better Health Victoria)

“[People with chronic fatigue] have been described as “missing people”, because as their symptoms get progressively worse, they disappear from employment and much of public life.” (Sydney Morning Herald)

Thank you for answering our questions, it has been really interesting and a pleasure to find out more about living with CFS. Going forward, and I am sure everyone joins with me, we wish you all the luck in the world.

Resources:

World ME alliance | Factsheet

Rough guide to ME/CFS

UK NICE guidelines 

Emerge AU | Supporting a friend with ME/CFS

BetterHealth, Health Direct

ME/CFS management guidebook

Awareness day