Why chronic fatigue syndrome is such a painfully inadequate label and considering how ME/CFS may be connected to neurodiversity

It felt like it was time to update my About section again and so (since most regulars seldom go back to read the bio page of a blog) I thought I would share the bones of my new entry here.

I wanted to refresh my introduction as to “why?” I write this blog, making it more succinct than it used to be because, the likelihood is, anyone finding it is likely to be suffering from similar health issues to mine and to be feeling chronically overwhelmed…already…without my adding to their plate!

I also wanted to reflect the fact that I have reached a place of increased clarity…about everything to do with my health status and that there are certain key considerations that I would like others in the same boat to at least think about, in the hopes of getting there sooner than I did. So I decided to cut straight to the chase and outline how, although I have had chronic illness for over 18 years now (and brewing long before that) it is only quite recently that I have begun to turn on the lightbulbs that help me to understand and navigate my conditions somewhat better, even if I am not able to solve them exactly. With increased understanding comes better management of day-to-day life and that counts for a lot, when it comes to avoidance of symptoms or being able to bounce back when they occur in their largely unpredictable and life-disrupting way.

In a nutshell, I came down with Myalgic Encephamialitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia back in 2005. It was only as recently as 2019 that I first began to play with the idea that those conditions, and the numerous other complications of my health that had come to light by then, such as Ehlers Danlos Syndrome (EDS) and Dysautonomia, had something to do with the fact that I am neurodivergent. Slowly but surely, I have come to realise…and accept…that I am both autistic and have ADHD (a combination known as AuDHD) and that both of these things had gone undiagnosed all of my life, up to the age of 51.

In my view, both the lack of a diagnosis (along with any support systems, accommodations, expectation management, self-understanding etc. that I might otherwise have had access to) and my neurodivergent “wiring” itself have contributed a large, if not determining, factor to my chronic health status. There are many known links between the conditions I have mentioned and autism, for instance, and more such links are starting to come to light as more and more late-diagnosed individuals start to explore, and discuss, what their neurodiversity has meant to them in terms of wellbeing and health. Please explore my various posts by topic and also the Neurodivergence Resources section at the top of the page for more information on all of this.

Because (whilst it was started as a way of sharing my lived experience as someone with ME and fibromyalgia) this blog now deals primarily with exploring the many cross-over areas between all of these factors together and really pivots, to a very large degree, on the topic of neurodiversity these days, as you may have noticed.

So I would say to you that if you are living with chronic illness, struggling to make sense of it and yet do not consider yourself to be on the autism spectrum or have other neruodivergent traits (for instance High Sensitivity (HSP), Giftedness, Twice-Exceptionality (2E), Overexcitability, Gender Diversity, Synaesthesia, Dyspraxia, Dyslexia, Dyscalculia, Dysgraphia are just a few other examples) then at least explore this blog with an open mind.

Everything that I offer is from the perspective of my lived experience of chronic illness and neurodiversity. I am not medically trained and do not profess to be an expert, except by direct experience, but what I aim to offer is a resource comprised of relatable experiences and clues in the dark for other people exploring their health status as I have had to do…and, in fact, as all of us with chronic conditions such as ME are forced to do for ourselves given these conditions are still so widely misunderstood, stagmatised, under-researched and swept under the carpet.

It’s down to all of us to do our own detective work, as far as we have the stamina to do, and to share as widely as we can in the interests of helping others in a similar boat. This is why I have poured heart and soul into writing this blog for quite a number of years and will continue to do so while I am able.

As already mentioned, I first became severely unwell with ME/CFS and Fibromyalgia back in 2005 when I was in my mid-30s (although it took quite a while to land on these labels) after receiving a flu vaccination, which led to a fluey episode from which I never seemed to fully recover. I became so deeply fatigued, all at once, that there were days when I felt like I was having to walk through armpit high snow and this was taking a toll on my ability to work. Strange effects such as heart palpitations and arrythmia, parasthesia, numbness, environmental sensitivities, gastrointestinal symptoms, headache, brain fog, orthostatic intolerance, hypersensitivity to noise and light, hearing and vision issues added to the effect. My preexisting back pain, from an old injury, became so severe I could hardly get through the day, gradually turning into such widespread pain that every part of me now hurt most of the time and I had frequent episodes of intense jaw and rib cage pain or spasm. Eventually, I was given no option but to give up work altogether to focus on my mystery health.

By the way, I’ve recently switched from using the label “Chronic Fatigue Syndrome” all the time in favour of referring to “ME”. Reason being, the former implies that fatigue is the main or only symptom of the condition whereas it is only one part of a complex, multi-system condition with many groups of symptoms (such as dysautonomia, chemical or environmental sensitivity or widespread pain, to name but a few). Continued use of the label CFS was making me feel as though I was stoking the already widespread misunderstanding about what I am having to deal with on a daily basis as there is so much more going on than tiredness!

Looking back, many of my issues began much earlier than this (in a way undiagnosed neurodiversity has helped to make sense of). I had recently been through a period of extremely heightened stress and this sudden crash…or autistic burnout…was (other triggers allowing) the apparent result.

Over the next few years, my symptoms waxed and waned, taking another turn for the worst following the removal of all of my mercury-containing dental amalgams. After that, my neuralgia symptoms worsened and my environmental sensitivities increased to include electro-hypersensitivity. Just a few years after that, my hypermobility (a lifelong trait, which I finally realised was EDS) became much more severe and I began to experience Postural Orthostatic Tacychardia (POTs) and various other symptoms of Dysautonomia. It was as a result of my research about these that I happened upon their link with autism and began to question “Am I autistic?” The four years since have been spent immersing myself in as much information as I can about late-diagnosed female presentation autism and ADHD and my conclusion is, yes I most certainly am.

This was a lot to take in and has taken four years to settle down in my mind, not to mention the knock-on effect it has had on my perspective of absolutely everything that has happened with my health to date. ME, considered by itself, is an utterly ruthless condition. Even in those with a milder dose, it likely alters everything about their life down to the very finest detail, the choices and limitations of which largely amount to a case of “managing” their symptoms. The complications of ME are wide ranging, including arbitrary sounding things such as costochondritis or, as I have mentioned before, environmental sensitivity and dysautonomia (review this list of related conditions).

My health has, likewise, peaked and troughed in terms of symptoms over the years but my life bears no resemblance to how it would look without ME and, when I have a flare-up, my quality of life is very poor for as long as that period lasts. This illness is surely one of the most isolating that there is, and in no small part because it is a lifelong sentence. When I get back onto a level that equates to reasonable quality of life it means that I am still having to live very carefully indeed, by anybody standards, and that this could change for the worst at any moment. That said, there are people out there with far worst cases than mine, who seldom see outside their bedroom walls, yet this condition is still, very largely, mishandled and misunderstood by medical practitioners and the public at large. This is not a cognitive illness; you cannot just think yourself better nor does getting out more or doing more exercise make it better and, in fact, this typically makes it much worse!

I strongly feel that my previously undiagnosed autism and ADHD go a long way way towards explaining why I was susceptible to chronic health conditions, partly because of just how overwhelming life can be due to sensory processing, social and executive function challenges that require you to require work much harder than other people in order to do well and be accepted, plus the sheer loneliness and isolation you can come to experience after decades of feeling as though you simply do not fit in, no matter what you do or how much you strive to mask or compensate for your differences. In fact, the toll taken from all those years of masking behaviours alone is now a widely discussed health topic, especially amongst late-diagnosed women. All of those factors can take a huge toll on your health, the more so when you have gone on for years without realising there is a neurobiological explanation for it all. Moreover, there are genetic factors and other biological predispositions to do with autism that are now being linked to having a certain susceptibility towards trip-wiring your health for no other conventionally acceptable “reason” and these mostly hidden factors (such as thiamine deficiency, oxalate overload and low glutathione levels, for example) are some of the topics I discuss in this blog.

I believe that neurodiversity is a truly wonderful gift to be explored, but that the fact my autism and ADHD status had gone completely undiagnosed all through childhood, higher education and well into a fairly challenging adulthood, during which I often felt as though I was “wired” differently to other people and was not being well understood by them, played no small part in the wholesale collapse of my health.  EDS became most apparent following the oestrogen drop of menopause and, from then on, the known link from EDS to autism opened up the rest of the box. I must add, ever increased awareness, bottomless curiosity and a willingness to join the dots, noticing trends and patterns across the bigger picture, have been essential tools on this health journey and these particular skills or traits rely wholly on my autistic mind along with its propensity to hyperfocus on topics that interest or intrigue me, asking the sort of “outside the box questions” that lead into new realms of discovery and moments of breakthrough.

Conditions like these tend to stop us in our tracks and call time on the old ways of living our lives. What I have also found to be true is that I have outgrown some of those old ways of living and that all these years of chronic illness have brought their own gifts, which is not to say that I am glad to have been struck down and kept from doing many of the things I always hoped I would be doing with my life but to say that I always prefer to look on the bright side and that is another aim of my writing in this space, as in, to shed light and encourage others to see the positives.

I sincerely hope that, if you have read this far, you manage to find something in here to be useful or encouraging for your own journey.


Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any symptoms that concern you.

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