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.
As you probably already know, May is M.E. Awareness month and May 12th (today) is International M.E. Awareness day. I wanted to write something powerful and awareness raising but I didn’t know where on earth to start. Not as in I don’t know anything about the disease, or the political ins and outs of its shocking lack of recognition. I’m simply sick of trying to convey how sick I and many millions are.
Yet I have to prattle on about it because it has been so ignored for so long, and I know there are many other M.E. fighters out there suffering far worse than me. They can’t often speak for themselves, so I need to.
So I thought what the heck. I’ll get a bit more personal and tell you a little bit about the beginning of mine and my family’s journey battle with M.E. .
Where it began..
I can’t say for certain, but looking back, I believe that I have been slowly getting ill since I was about 11. I began to experience pretty bad head pain/migraines. I can only describe it as a mixture of both stabbing pains and blunt pain, as if I’d been hit with a hammer, in the back and top of my head. I remember having to go to bed for hours at a time, but I never thought anything of it. Didn’t go to the Doctor, just got on with it.
I had always loved netball, but as my teen years rolled by netball and any physical exertion became harder and harder. I was playing the same amount, so I knew fitness was not the issue, but all the same it got to the point where I could either go to netball practice and not be able to get into school for a few days or I could go home and collapse, hoping to make it in the next day. Again, no doctor. Just getting on with it.
I loved seeing friends, but again, it would get to the point where my body was screaming at me to go home just so I could collapse without completely embarrassing myself. There were many times when people thought I had just had too much to drink, which to me was a less daunting storyline to go with.
I was officially diagnosed at 17, after having glandular fever and never recovering. My diagnosis came one short month after my brother had also been diagnosed with M.E. following diagnoses of ulcerative colitis and addison’s disease. I was in total disbelief and downright denial. He had become extremely ill, as in collapsing and vomiting – a lot, hospitalised, mostly bedbound etc… My thoughts at the time: No way could we have the same thing. No way could either of us have something that wasn’t going away. No way could both of my parent’s children have a chronic illness with no cure or treatment. Just no.
I wholeheartedly denied the illness from my life for almost 2 years. I made it through my last year of college albeit pretty much from home, studying by myself and then somehow after college held down a part time retail job for about 8 months. For those last 2 years of “normality”, every day my body felt like it was being tortured, but I told myself that must be how everyone felt. Again, I needed to get on with it and pull up the old bootstraps. That message along with “stay positive” were the only words I was given by a Doctor upon diagnosis. So I lived by them. I was going to get better if I just thought it hard enough. Right?
One day in August I woke up and couldn’t move for the first 7- 8 hours of that day, not even a toe wiggle. That went on for 2 months, every day. When I could eventually move, I would literally roll and fall out of bed onto pillows I’d strategically left the night before, crawl/drag myself to the loo and then possibly slide myself down the stairs which took me a good 10 minutes. The rest of the day would be spent in a room alone, and in darkness, no tv, nothing. Sure, I’d had crashes before, but nothing quite like this.
All the while, my boyfriend at the time was texting me, asking : “Why I didn’t want to see him?” “Why wouldn’t I go out?” ” Stop being so boring Lara.” All I could think was that I felt like I was dying and that when I did manage to see him, somehow he should have been able to feel the radiation of death coming off my body. I tried to tell him I really wasn’t well, that there was something seriously wrong with me many times, but he never seemed to “hear” it. He certainly never believed it. So I kept trying to live a double life. I wanted the lie of health to be true. I pretended I wasn’t stuck in a darkened room, or that I couldn’t see him texting me but hadn’t been able to reply because I couldn’t move my hands for the first half of that day.
That was almost 6 years ago.
M.E., or Chronic Fatigue Syndrome as it is also unfortunately known, is exhausting, excruciating and many other awful words. The symptoms that run through my body every day are beyond the scope of my former imagination. I couldn’t have made this illness up even if I’d wanted to. And at this age especially, the supposed “prime of life”, for so many years? Hell no.
And yet, the disbelief, and the mistreatment that comes along as a package deal with this disease, from the public to the media to the medical community, even family and friends, somehow outweighs it and brings your life that bit closer to unendurable. A margin which you thought no longer existed. This fight for recognition that you are seriously ill – the dismissal, the cruelty, and sometimes psychological, even physical abuse of patients is beyond my worst nightmares.
So for those us with M.E., belief and understanding, or the want to understand rather (because no one can ever fully understand until they’re in our bodies, nor would we want you to experience this!) that is what could mean the world to someone suffering in silence, maybe even the difference between endurable and un.
Thank you very much for reading, I can’t say how much I appreciate it.
Happy M.E. Awareness Week!
I’d like to add that today, I am very lucky to have an incredibly supportive family and a few lovely friends, you know who you are! I’ve also found so much support and “virtually” met such kind, inspiring people through the online chronic illness community.
Please sign this petition to demand more research into M.E./CFS in the UK! We need at least 10,000 signatures and we’re not too far off!
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.
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!