This isn’t the first time I’ve danced the tango with an ME/CFS- like illness. I was only 18 years old when my first episode struck. It lasted a ‘mere’ 10 months (approximately), compared to the almost 2 year ongoing slog of this current episode, and I had an extraordinarily lucky 25 year grace period in between them both.
It’s important to discuss it though, because ultimately I received a ‘medically validating’ diagnosis for my first illness, which is different from my current experience on this diabolical ME/CFS merry-go-round – and yet there are striking similarities between each sets of symptoms, as well as important differences.
It’s important, because one of the key arguments used to denigrate the validity of the physical disorder/disease component of the ME/CFS experience, is that “organic disease (ie “real” disease) would show up on tests/investigations if it existed/were present”.
There are HUGE flaws to this argument/belief.
First of all, despite what people (including other medical professionals) may think, there are actually relatively few investigations needed to be carried out, before ME/CFS sufferers can be shuffled into the ME/CFS diagnostic box. And once entrenched there, it’s all too easy to have every new symptom dismissed as merely part of the ME/CFS baggage. (To do this topic justice, I’d like to discuss it in further detail in a later blog).
Secondly, we vastly overestimate the accuracy/sensitivity of some of the tests we do perform in finding what we imagine we’re looking for. Take CRP/ESR* for example. They’re common blood work investigations and are generally used to pick-up/measure/monitor ‘inflammation’ anywhere in the body, from a vast number of different causes/effects, in a huge number of different conditions (including bacterial, viral or fungal infections; rheumatic and other inflammatory diseases, malignancy; and tissue injury and necrosis). They’re immensely useful when used in the right context.
A CRP/ESR test will undoubtedly have been performed on a ME/CFS patient at some point in their diagnostic pathway. And if such a test is performed, and the result is ‘normal’ (which it probably will be), then this is generally taken as evidence that the body is not undergoing an inflammatory process.
This leap of assumption is important because:
- once a patient starts to accrue ‘negative/normal’ test results, their doctor, either consciously, or subconsciously, may start to becomes suspicious about “made-up symptoms” (I’m absolutely not saying this should happen, but unfortunately it’s often what does happen), and
- once a doctor has decided there’s no sign/evidence of inflammation, then they are falsely reassured and will probably stop looking for it.
So, why do I feel that I need to particularly discuss this issue? Well, during my first illness in 1994, all my repeated blood tests, including inflammatory markers, were always ‘normal’ (except once, a very small, non-repeated, elevation in my white cell count). My symptoms back then, were similar to recent symptoms, but in addition, during my first illness I also developed high nocturnal fevers and cervical chain (side of neck) lymphadenopathy (swollen lymph nodes). At the time, there were concerns that I may have Hodgkin’s lymphoma. I went on to have a lymph node excision and my biopsy was reviewed under a microscope. It showed that, on the inside, my lymph node was ‘necrotised’ (full of dead tissue). My experienced surgeon said that he’d never seen anything like that before.
There was some unknown process going on in my body, severe enough to cause necrosis of certain tissues, and yet inflammatory marker blood tests were normal!
How is that possible?
I honestly can’t tell you ‘how’ it’s medically possible (perhaps if my brain weren’t currently so foggy, I could at least have a good-going attempt to explain it), but because I can see both sides of the picture, my responsibility, as currently both a patient and a doctor, is to say that it IS possible. To say to all my fellow professionals, who have come to rely on tests/investigations to diagnose illness – and who make assumptions about what is, or is not, occurring inside a person’s body based on numeric results, – it IS possible to have significant disease processes going on, without being able to pick it up with the tests that we currently have commonly available.
I also want to say:
“to all those medical professionals that I have already met, or will meet on my current CFS/ME journey, I do know the limitations of available tests and current medical knowledge. It’s OK. I don’t expect, or need you (as my doctor and normal human being) to necessarily know all the answers - to know what is causing my ME/CFS symptoms. It would be really nice (*understatement*), but it’s simply not currently possible. What I do need is for you to be understanding when I tell you my personal details. To have an awareness of the limitations of the tests that you perform. To truly listen when I speak. To support me through this extremely difficult experience (by simply doing the above - it’s not rocket science and won’t take more than the care that you would normally, hopefully give any patient) and don’t give up on me simply because I’m not getting better, despite the time and care that you’ve already given me”.
Life, in all its forms, truly is a miracle, and the workings of the human body contain countless, unsolved mysteries. We don’t know all the answers yet (I doubt we ever will), but if you’re putting together a jigsaw, you don’t throw away the pieces just because you can’t get them to currently fit, or because you can’t make out the final picture yet. That would be pretty daft, wouldn’t it.
I was ultimately diagnosed with Kikutchi’s Disease as an 18 year old. “Diffuse necrotising lymphadenitis” (whilst having normal inflammatory markers). I had to take a year off medical school and restart my first year again the following year. At the time it felt like a disaster. Now, it feels like a gift.
*CRP C-reactive protein https://en.m.wikipedia.org/wiki/C-reactive_protein
*ESR Erythrocyte Sedimentation Rate https://en.m.wikipedia.org/wiki/Erythrocyte_sedimentation_rate
Wow – I also found this really interesting article when looking for your link to ESR!! The jigsaw pieces are out there. We just have to find them and put them all together.