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,


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.

Severe M.E. Day – The Living Death Disease

I’m unintentionally starting this blog off on not the fluffiest of subjects but an incredibly important one that needs to be talked about: M.E. (Myalgic Encephalomyelitis) A.K.A CFS (Chronic Fatigue Syndrome). But boy does the latter do an injustice to the horror that this illness can be; as one sufferer puts it “it feels as if someone has drained out all your blood and replaced it with concrete”, and that is only the beginning…

Today is “Severe M.E. day” and I felt compelled to do my little part and write. After all M.E. is why I’m mostly housebound and even considered writing a blog in the first place , but luckily most of the time I am only “moderately” affected– but we’ll get into that in another post. Today is all about the 25% of severe M.E. sufferers, approximately 60,000+ people in the UK alone, who are existing in a living death: completely bedbound, often paralysed, too ill to speak or eat, meaning some have to be tubefed, amongst many other symptoms such as constant excruciating pain. There is currently no cure and no effective treatment.

“[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

If you don’t have M.E., or I guess even if you do, it can be really scary to talk about, particularly at its most severe.  After all it can happen to anyone, and yet that’s exactly why it needs to be spoken about.

8th August (today) is the birthday of Sophia Mirza. Sophia died at the age of 32 from M.E.  She had kidney failure and inflammation of the basal root ganglia (part of the spinal cord), both of which the coroner stated were a result of her M.E., which she had been battling for 6 years prior.

About a year before her passing, police kicked Sophia’s door down and forcibly removed her from her caring mother. She deteriorated whilst in hospital for 2 weeks and came out sicker than ever (released only thanks to her mother’s appeal).  The reason for her hospitalisation? A psychiatrist who saw Sophia for 20 minutes with no physical exam who decided that her mother must be “keeping her ill” (found to be wholly untrue) when in fact her mother was keeping her daughter alive. The hospitalisation was too much to recover from and from then on Sophia’s health gradually became worse and worse until she died.

Sadly this is not the only story like this; there are many.

I’m sure someone might be thinking “yes, this is all awful, but there are many awful diseases out there…” and yes you would be absolutely right. However, the truly shocking thing about M.E. is that it is so incredibly underfunded and sufferers are so often left in the dark (literally) by the majority of the medical community whom have ignored and even denied this disease for far too long. Even though there is now a multitude of studies showing this to be serious, physical illness , people have quite literally been ABANDONED.

Thankfully things are starting to change, more and more research is slowly coming, but we need to encourage much more; there is still only the equivalent amount of funding for M.E, a potentially fatal illness, as there is into hayfever!

So if there’s any small thing that you can do to help spread awareness on behalf of all the severe M.E. fighters like Sophia who cannot speak for themselves – even just educating yourself more on the illness by watching the video below, signing this petition, or even giving to the Open Medicine Foundation Study  – please do it. You simply cannot imagine just how desperately ill M.E. can make you feel until you have it, please don’t dismiss it.” target=”_blank”>

That’s enough doom and gloom for today (although it’s positive really, raising awareness and all, and encouraging research). Thanks so much if you read this and I’ll hopefully be writing another post before long!

Lara x