What is this ME/CFS Thing Anyway? Part 3 of some unknown number.
Part one here
Part two here
So previously we learned that there is no diagnostic test, and there isn’t even an agreed-on checklist of symptoms. Also, we noted that ME/CFS is not a mental illness. Today, let’s have a look at the Australian symptom set, and how they apply to me.
These criteria are a community sourced set from Emerge Australia, the Australian ME/CFS education, activism and all round community umbrella group. It’s based on the International Consensus Primer (ICP) for Myalgic Encephalomyelitis (ME), but simplified down to the essentials, and plain language, and the highest relevance. References to more technical papers and discussions are provided, so it’s a good page to start learning from.
I am a member of Emerge Australia by virtue of being a member of the ACT ME/Chronic Fatigue Syndrome Society The ACT group has support group meetings and talks and stuff, which I almost never go to because I have ME/CFS. Ha. I should write more about them later. They run an awesome education program.
So this is the Emerge list:
Primary symptom (compulsory for diagnosis):
- Overwhelming post-exertional malaise as a result of minimal cognitive, emotional or physical effort. This exhaustion may occur immediately after activity or be delayed by hours or days.
A range of simultaneous symptoms (several of the following):
- Sleep problems/disturbances;
- Widespread pain and headaches;
- Neurocognitive dysfunction: short term memory loss, concentration impaired, confusion, disorientation, hypersensitivity to light and sound, emotional overload;
- Problems with dizziness and balance;
- Problems with body temperature (including intolerance of extremes of temperature) and weight;
- Recurrent flu-like symptoms (e.g. sore throat);
- Gastrointestinal Problems (e.g. nausea, abdominal pain, bloating, irritable bowel syndrome (IBS))
- Sensitivities to food, medications, odours or certain chemicals.
The manifestation of symptoms is highly individualised. There may be marked fluctuation of symptom severity from mild, moderate to severe (vide infra) and this hierarchy changes from day to day and hour to hour. A relatively small (25%)(ME Alliance report) proportion of ME/CFS patients suffer in the severe end of the ME/CFS spectrum. For them the range and severity of symptoms are quite marked and they may be house or bed-bound and require a wheelchair to be mobile.
How does this apply to me? I have all of it, and more, but in highly variable amounts. If you’re after a general education on ME/CFS and don’t want the personal TMI, you may not bother to read on. As noted, it’s “highly individualised”. This is how it applies to me.
Post exertional malaise (PEM)
Hell yes. Primarily exhaustion, but this is also where other symptoms are likely to be at their worst. This post has something of the PEM experience.
I’ve already blogged about sleep problems, and probably will again.
Widespread pain and headaches
I’m pretty lucky here in comparison to some, my pain levels are low. I get muscle aches and generalised body aches and assorted other aches when I’m in PEM, and I always have a headache. Curiously, since becoming ill I have not had trouble with migraines. A side benefit? I was having pretty bad perimenopausal migraines, but they stopped after I became ill, which was a couple of years before the menopause kicked in.
Since my pain levels are usually quite mild, I only take paracetamol a few times a week. I do resort to lavender oil and such for minor relief. I get temporomandibular joint (TMJ) pain and tooth aches at times, especially when in PEM. The TMJ pain may be from clenching my teeth a bit too much, a recent habit that I am trying to break. My teeth are actually fine, it’s referred sinus pain. TMJ is a stress pain. In these cases, that lavender or peppermint or tea tree oil has genuine therapeutic benefit.
I definitely find my concentration impaired, and I experience confusion, clumsiness, and intermittent aphasia when I’m not at my most alert. I’ve written about this under the commonly used term “brain fog”. I also have the hypersensitivity to light and sound, especially sound. Loud noises can feel physically painful, like a nail in the head. Sometimes bright light is problematic too, but on other days I can enjoy the sunshine.
Problems with dizziness and balance
Yeah, some of these. Not all the time. Not long lasting. It’s like having low blood pressure except that I don’t. I used to run a bit low, for decades, but it suddenly went up a couple of months before I got sick. Coincidence? Orthostatic intolerance is another term often seen, as is postural orthostatic tachycardia syndrome (POTS). I certainly check the boxes for those, palpitations and blurred vision and all, but I’m fairly sure it’s secondary to the ME/CFS.
Problems with body temperature (including intolerance of extremes of temperature) and weight
This too. I layer. And it’s not just all too hot or too cold. Sometimes it’s both at once. I might be wearing a thin T-shirt, and PJ pants, woolly socks and a blanket over my legs. Or I’ve got on a heavy shawl and cardigan, and I’ve kicked off my socks and have hot legs. I often vary between too hot and too cold in bed. It’s no great drama. As for the weight, I don’t know. I gained a massive 15kg in a week once, with no variation that I was aware of in my lifestyle. I attribute that sudden shift in the set point to menopause, but who knows? Maybe it is the ME/CFS.
Recurrent flu-like symptoms (e.g. sore throat)
Yep. Especially in PEM. The sore throat is often the first sign of the malaise arriving. Overall body aches and hot & cold chills and a much worse headache than usual are part of this suite.
Gastrointestinal Problems (e.g. nausea, abdominal pain, bloating, irritable bowel syndrome)
I’m pretty lucky with this one – I have pretty much no GI symptoms, except for some nausea with the worse levels of fatigue and PEM. Oh, and I’m pretty sensitive to magnesium – it goes right through me as the proverbial dose of salts, which it literally is. But I have no idea if this is new, since I never tried taking it before I was sick.
Sensitivities to food, medications, odours or certain chemicals.
Again I’m pretty lucky here, not too much trouble. A weird thing is that I cannot stand the smell of eggs in the morning; it makes me gag. If the Bloke is making himself eggs for breakfast, I can’t be in the kitchen. Lunch or dinner are still fine, which is good because the Bloke makes a very excellent omelet. I never had this problem before getting sick. Full English at the B&B to stoke you up for a full day’s walking: no worries!
There are some other things which I’m pretty sure are part of the illness.
I’m very surprised that they didn’t include this in the list or, I suppose, just folded it into the Post Exertional Malaise category. It’s in the name. It’s my primary symptom. I am always, always, exhausted, regardless of previous exertion. The level varies somewhat, in the range from utterly completely exhausted, unable to summon the energy to move my hand, to pretty damn tired but I can make an effort. I’ve got another post partly written about fatigue, so I’ll come back and link it here later.
I also have extreme shortness of breath on exertion (SOBOE). And when I say “on exertion”, I don’t mean going for a bike ride or a dance class. I mean maybe walking 100m slowly, or having a shower, or standing at a kitchen bench chopping up an onion, or sometimes even just getting out of bed and going to the toilet. Puff puff puff.
This is a very common symptom for heart disease patients, which is why they have a standard acronym. But I don’t have heart disease. I have seen multiple cardiologists and had blood tests and ECGs and ultrasounds and all that. My heart is just FINE, thank you. Even the POTS and palpitations are just my heart responding sensibly to prevailing conditions.
It’s also not a lung problem. I did acquire asthma at the same time as the ME/CFS, but I’ve had all the tests and my respiratory specialist is certain that the SOB is unrelated. And while I do have some atelectasis (partial lung collapse) it’s not enough to explain it. My lung capacity remains pretty high – my spirometry tests put me at much higher capacity than most women of my age, despite the missing sections. (Probably due to my years of singing.)
Does that go in with the neurological symptoms? Possibly. But maybe it’s GI or metabolic. Anyway, I can get very shaky when I’ve overexerted myself mentally or physically. I notice it more now I’ve taken up playing with jewellery. I also get shaky (and cranky) when I haven’t eaten, so perhaps it’s hypoglycemia. People can get that from over-exercising and with the ME/CFS, even standing up can be too much exercise some days.
I’m fairly sure this is just fatigue as applied to ocular muscles. It’s worse when I’m tired. My eyes are slow to respond to changes, so getting tested for new glasses is a pain. That “which is better, A or B?” series can be tricky when you have to wait for your eyes to adjust to each change rather than just snap in to focus as they used to. Luckily, my optometrist is patient and understanding.
I keep thinking there’s something I’ve forgotten. I’ll just leave this space here and come back and edit it if I remember.