There is a lot of debate around the place about the naming of this condition from which I suffer and what is should be called. There is general agreement that Chronic Fatigue Syndrome (CFS) is an inappropriate and misleading name. Other names have been suggested by various groups, but there is yet to be an agreement.
I don’t want to delve too deeply into the complexities of the different suggestions but I want to discuss a couple of specific reasons why calling this condition “Chronic Fatigue Syndrome” is not appropriate.
1) symptom vs disease.
Chronic Fatigue Syndrome is a complex, neuro-immune and metabolic illness that affects every cell in the body. It has over 80 different symptoms. The hallmark feature of this illness, compared to others with similar symptom profiles, is Post Exertional Malaise, or the worsening of symptoms a day or so after activity.
Compare this to Chronic Fatigue, which is a symptom of a number of long term conditions from nutritional deficiencies to mental illness, medication side effects to hormonal imbalance, non-degenerating chronic illnesses to untreatable terminal organ failure. Chronic fatigue means being exhausted all of the time. It’s one of the 80+ symptoms of ME/CFS and almost every other chronic illness out there.
Defining an illness by one symptom, which it shares with hundreds of other conditions, leads to misunderstandings about the nature of the illness. Even doctors fail to understand the differemce between the symptom and the disabling chronic illness.
About 7 or 8 years after my initial diagnosis, having moved cities and changed doctors, I attempted to discuss the sudden worsening of my symptoms with my GP. I told her about my diagnosis (because I hadn’t discussed it with her until now as I had been managing it just fine). Because I didn’t expect her to have seen it in my recent notes, I told her about my diagnosis and history with the illness and said I was having a bad relapse. We discussed SSRIs and Vitamin D as options for managing the worst of my symptoms at the time. SSRIs and I didn’t mix well last time I tried them (and they didn’t help either), so I opted for vitamin D instead, to get me through winter at the very least.
I saw her every few months for the next 3 years, or there abouts, each time we discussed my condition and symptoms. I don’t recall any further tests, but we continued with the VitD as that did seem to help a little.
It turns out that this new clinic had never asked for my notes to be transferred from my old clinic, do my diagnosis was not recorded on their system – I found this out when I changed doctors in 2015. This whole time my GP had been recording that I said I was “tired all the time”, which was definitely not the case. I told her I had Chronic Fatigue Syndrome and I referred to this each time I visited.
This GP didn’t know the difference between the symptom ‘chronic fatigue’ and the chronic illness ‘Chronic Fatigue Syndrome’. She wasn’t treating my condition, she was treating a single symptom.
ME/CFS isn’t even about being tired
Don’t get me wrong, I am definitely always tired, at a level of exhaustion that is akin to having the Flu or other acute infection, but you do get used to lower energy levels (to an extent). The thing that makes this condition so difficult to live with and to understand is everything else it brings and the Post Exertional Malaise (PEM) in particular.
Today is Saturday. I am in bed, recovering from a trip to the zoo on Monday, following a long weekend relaxing in a cabin in the country. I don’t feel especially weak, or tired, or even nauseous, but I have terrible PEM. It took me a while to work out that it was my ME and not an infection.
Why? Because I had a migraine and mild cold/flu like symptoms.
But covid! Shouldn’t you get a test? Maybe, and I will consider that if anything changes to suggest I’m wrong about this, but at this stage I’m pretty confident confident that it’s PEM because my symptoms disappear when I lay down and do nothing (as in no phone, no tv, no reading, no talking, not even sitting). Just writing this blog is making my lower back and ears hurt and giving me allodynia (sharp, hot pain in response to touch) on one side of my face and numbness in the other. If I close my eyes for a few minutes these ease. If I get up and walk around I get dizzy (orthostatic intollerance), start to cough (my vagus nerve getting upset), and eventually start sneezing (no idea, maybe that’s just pollen).
But I’m not particularly tired. I actually feel pretty energetic*, all things considered, so it’s frustrating to be stuck in bed like this.
Fatigue vs Malaise
Chronic fatigue isn’t the definining feature of Chronic Fatigue Syndrome, PEM is. PEM is some kind of illness after exertion, any kind of exertion, physical, mental, or emotional. It’s not feeling yuck during exertion (although that may happen too), but after, usually with a 24 or 48 hour delay. It took me years to recognise the pattern myself, even though my first doctor had picked it up from what I had said about having a day off to de-stress but being more sick the next day (that lovely 5km walk was certainly relaxing and helped my mood, but did nothing for my body’s energy levels). It’s not the same as DOMS, the Delayed Onset Muscle Soreness that is normal after exertion. PEM can be “getting a cold” a day or 2 after celebrating your birthday every year, or a migraine after a long walk, it might be a bout of vomiting or diarrhoea or weak legs and fainting the day after an exam. It might be pain in the muscles and joints of your legs a day or two after holding a friend’s baby for 10 minutes, or a needing to sleep for 15 hours on Wednesday night because you got too hot or too cold on Tuesday.
I don’t know what we should call this condition instead. What name ideas do you prefer?
* remind me to do a blog about my vaccine response.