This post has been brought to you by the letters C9H13NO2 and the number 164/122.

Every article about ME/CFS seems to feature an image like this one.

Yeah, this definitely says “I want to die now”

Where are the images of lying in bed, so tired that your body is using adrenaline just to keep your heart pumping, so exhausted you feel like throwing up, heat splitting body aching, and nigh on suicidal from the anxiety it triggers?

Where are the images of shakes so bad you appear to be vibrating, and BP jumping from 98/60 to 164/122 because you stood for a little too long or got a little hungry or dehydrated? Or worse 125/80 while in bed trying to sleep? 

Where is the chronic pain so bad you sprain your ankle and only realise because you notice the bruising and swelling after your weekly shower? Where are the images of slurring your words and losing the ability to speak, or forgetting all ways of referring to one’s self because the light is too bright? Where are the cold and flu symptoms that come on 12 to 72 hours after exertion?

What about the tooth damage from dysautonomia, and the PTSD from dealing with medical professionals who refer to the “Funny Turns Clinic” (the one part of the hospital that deals with many of our symptoms) as the “we think you’re imagining it clinic” (true story) and see the dramatic weight loss of 1/3 of a chronicly ill person’s bodyweight as only ever a bright side before considering that it may actually indicate something Very Very Bad?

Does this image capture losing everything you ever were, ever achieved, and ever loved doing to the cruel whims of an uncooperative body? Where’s the memory that could once file away exactly where and when you last saw a person, 8 years ago, but now can’t cope with where you put your keys? Where’s the 30 point drop in IQ between good days and bad days?

I want images of someone who has lost everything they considered important to their identity, everything they ever felt proud of, and everything they ever dreamed of becoming. I want to see the utter dispear and terror of knowing that you still have so much more to lose, like digesting solid food, seeing daylight, or walking.

What about the deep resentment of those who complain that 4 years is too long for Long Covid research and we should have a cure already, when you’ve personally been waiting almost 2 decades and know many people who’ve been waiting for longer than you’ve been alive yet are still not taken seriously enough to warrant research funding? I want them to show someone so desperate for a cure they’d spend $50,000 to travel to Europe to try an unproven, minimally regulated, hail mary treatment in the hope that they’ll get a tiny bit of improvement.

Maybe they can show someone who lies awake at night afraid because their housing situation isn’t sufficiently secure and they don’t see themselves ever having the 6 months of being well enough that it takes to move house.

She does look like she’s dreading the day ahead, so maybe she’s thinking about how she’s going to have to choose between being civil to others and going to the shops for food, or between cleaning the kitchen bench and still feeling well enough to prepare and cook food.

Can we have images of a person who doesn’t look sick but is so sick her quality of life is lower than that of a person on chemo or in the late stages of AIDS?

She looks like she might benefit from trying yoga or meditation or whatever supplements are trendy this week.