ME/CFS, “Chronic fatigue syndrome” is a stupid name that perpetuates misunderstanding about the disease. Chronic fatigue, because anyone can get unhealthily tired, run down or burnt out sometimes. “Myalgic encephalomyalitis” because it falsely sounds like there is some scientific understanding of the disease. Myalgic means muscle aches or pains and Encephalomyelitis means inflammation of the brain and spinal cord, however the ME association says “there is no significant or consistent pathological evidence to support the use of these terms”.
The name, the lack of societal understanding, the lack an diagnostic test, the fact that all of our test results keep coming back normal, combined with the occasional ignorant comments from people we come in contact with, can have a very harmful effect on both our mental and physical health.
Personally I don’t feel particularly vulnerable, as so far in my life I’ve been lucky to have had fairly robust mental health, and lucky that such comments have been few and far between. Most people around me are pretty good at being sensitive, respectful of my intelligence and knowledge of my own body, and not-stupid!! However the other day I encountered some of the stupid, and it fired me up.
Every now and then, I try a bit of a woo-woo treatment, coz you just do never know, and it’s not like mainstream science has anything for me yet (thank you decades of research funding neglect). I signed up for an “intuitive massage”. I have had (different) treatments from the owner of the business before and I like them. They are humble, non presumptive and kind, and I thought they might make wise decisions about who they employ, or hire out their space to. But although the massage I received from this new practitioner was good, the “intuitive” bit was bullshit. Generic bullshit you could say to anyone, but would you ever say it to someone who had an actual diagnosable disease that wasn’t “chronic fatigue?” Something like cancer? I really hope not. For example, she said “my intuition says you won’t get better until you really want to, and maybe you don’t really want to”. And, “I think that deep down you know what caused this, but you haven’t been willing to go there”.
Aghghgh. Such crap. She also had some “intuitions” that I should avoid gluten and dairy, spend time in nature with bare feet (“grounding”) and write out my feelings. (Well here I am writing out my feelings lady!!!). I do know that some people might experience prolonged fatigue that is not of the same medical origin as whatever ME/CFS is. And if they eat less crap and more vegetables, get better at stress reduction, and perhaps get professional help with past trauma or treatment for medical depression, they will regain their lost energy.
But my disease is not this. It is not in my head. It is a serious malfunction of some part of my body, probably immune-related. I am not just burnt out, kale deficient, or shit at facing up to repressed emotions. (I am not claiming perfect at any of these things, just a regular work-in-progress human). I am not depressed, although this is a common consequence, rather than a cause of this disease.
I shared about this on the M.E./CFS support group and many people shared similar experiences, grief, frustration and anger. People with ME/CFS have been medically gaslighted for decades, not just by woowoo practitioners, but by mainstream medical practitioners, friends, family and random people we’ve just met, who’s friend’s cousin recovered from “chronic fatigue” because they did (.......insert particular diet, supplement, meditation practice bla bla bla........). I know these unsolicited-advice-givers just want to be helpful, but if someone has had this disease for a few years already, chances are there’s not much we haven’t tried already.
Somebody described the behavior of this therapist as “not intuition, but projection, counter-transference and spiritual bypassing”. I have met many people who are really into this sort of magical thinking, and it has often pissed me off, but I do feel compassion for the unhappiness that underlies it, and understand how seductive it is to hope you have more control over your life simply by applying a bit of positive thinking and woo *. And maybe some of it really works for some people, by reducing stress. Gratitude, visualization, yoga, meditation and vegetable-eating are all wonderful, worthwhile practices. Just, please don’t ever say or suggest something to someone with ME/CFS that you would not say to someone with cancer, Parkinson’s, MS, or any other “real” disease. Our disease is real too. More vulnerable people can form serious doubts about themselves, feel guilty about being a burden and physically push themselves more than they should and get seriously sick.
Thank you, rant over.
**And I’m a little bit susceptible to hopeful/magical thinking myself - which is why I do try a bit of woo every now and then. Also because the placebo effect can be powerful. And because there are lovely alternative health practitioners who don’t serve up bullshit as a side. You can be treated with much more care and empathy than you are in a 10 minute conventional doctor appointment. Maybe the most valuable thing is that you get to lie down for an hour and do nothing else! And I’ll admit also do it occasionally to try prove to certain people that I am not a completely close minded scientific rationalist, because I think some people judge me negatively for this! I do see the flaws and gaps in science! It’s a complicated mix of reasons
