It’s in my blood… & it’s hopeful

This past Monday (29th August) a study was released by the University of California which confirmed a chemical signature in the blood of those with M.E./CFS. (One of the illnesses which has made me mostly housebound and stolen my ability to work, travel, socialize, do most things like a regular human being.) If replicated, this means that a blood test could be created to diagnose M.E. For any non-M.E-ers, this is a BIG deal to us M.E. lot.

Diagnosis is one thing that has seriously muddied the waters of ME/CFS research because many doctors in the UK use the rather rubbish Oxford criteria whose only requirement is fatigue for 6 months. Which, by the way, you could have with about a bajillion other illnesses and M.E. is unfortunately far more generous when it comes to nasty symptoms. This then makes research using such ill-diagnosed participants pretty useless for M.E.

The other exciting finding is that the signature pattern of metabolites in the blood, indicated a hypometabolic (slow metabolism) state of hibernation/survival (only seen in a type of worm) in 95% of ME/CFS patients. Now THAT is big. And feels pretty accurate as I do feel somewhat like a floppy, exhausted worm as I lie here waiting to have enough energy to make it to the kitchen and make a cup of coffee… Although I don’t believe worms drink coffee.

What this all means is that us ME-ers are in a constant state of hibernation/survival, wherein our bodies put growth and repair on hold and “survive” becomes the goal as opposed to”thrive”. This has been compared to “Dauer”, a stage that occurs in threadworms when threats which could otherwise cause cell death occur. They can survive like this for a matter of weeks, but it is not meant for a long term state. However, in M.E. sufferers it seems to occur for years and decades, possibly after encountering a threat such as a virus. During this state, the body – and person – suffers as it is no longer being given the normal, optimal supplies it needs to function properly.

Essentially, we are in a hypometabolic, unrelenting state of survival, which feels AWFUL; like being partially starved of food, water and oxygen, all day, every day (for 8 years in my case). Although mercifully still getting enough, to stay alive, just. It all sounds pretty grim but understanding the mechanisms behind our illness are the first steps towards treating them and with more research like this, we might not have to just survive for too much longer. Fingers, toes and knees crossed.

For a proper, in depth explanation of the findings (from someone who really knows what they’re talking about) click here

Thanks for reading,

Lara

P.S. I’m organizing a Millions Missing Protest in Oxford on September 27th, and we need more shoes to represent those with M.E. who are too ill to protest and participate in normal life. So if you’re an M.E. sufferer please send a pair of shoes along with your name, how long you’ve been sick, age and what you’re missing from your life before M.E.