ME has a very wide spectrum of severity and symptoms. Many scales don’t go severe enough to reach the depths people experience, leaving out quite a large and definitely important percentage of people. Or they don’t properly distinguish enough between the severities. Which admittedly is hard with such a wide breadth and range of symptoms. But it tends to be the severe end that isn’t distinguished - arguably the people who need clear definitions the most.
No recognition of the difference between those mostly housebound, housebound, mostly bedbound, and 100% bedbound. Those four generally end up as two categories, sometimes just one! All under the same Severe ME label, making them appear the same severity. And that’s not to make it a competition but about accuracy. Because if doctors have ever heard of severe ME (and many haven’t), you’re lucky they might think mostly housebound but not as severe as it gets or needs to be recognised. They have to know the severity a patient is at and how to act appropriately!
I didn’t easily find anything that reflected my reality until joining this community. All I saw were things like “what are the 7 symptoms of CFS”. Nothing about the paralysis and the terrifying symptoms, nothing about the people far worse than me, unable to speak or swallow. Nothing to make my Dr understand that this was ME just a severe manifestation, something they hadn’t ever seen before. Instead, I, like so many other Severe and Very Severe ME patients ended up with a misdiagnosis of FND because they didn’t recognise the symptoms as ME - which they think is just fatigue.
Sometimes I think some people are scared to talk or learn about different severities due to the very real and present fear of worsening. It often feels like many turn their back on this side of the illness particularly when people actively unfollow for sharing the truth. And most health professionals don’t address it or warn people, particularly since many of us ended up Severe due to their mistreatment and GET.
Even charities fall short, mentioning the effect something has on the housebound but not mentioning the greater effect on the bedbound.
“It is important to realise there’s a severe end to the spectrum of ME and that the average GP may only see one case in his entire life, and these cases are almost unique” - Dr Nigel Speight
It’s no wonder they are uneducated but they have to learn. And there has to be more of an effort to educate.
So please do talk about the reality of Severe ME. It’s so important because Severe and Very Severe ME patients are often missed in healthcare settings, in research, by some charities, by some of the advocacy accounts with the highest followings and missing most from living. Many unable to speak up themselves or even access this community. The people who need the most support and awareness.
Help educate, help people understand. Empower ME patients by sharing knowledge. Make your friends, family and anyone, medical professionals if you can, aware and of the true extent it can be for some.
Had I known three years ago what Severe/Very Severe ME was, the symptoms rarely spoken about that I experienced, my story may have been very different. My diagnosis journey may have been very different. My quality of life may have ended up very different - in better ways. It’s crucial it can be recognised quickly to avoid further worsening. It can be life or death!
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