How To: Live With CFS/ME. Part one.

Time for something personal.

About a year ago I started getting sick more often, short of breath, tired, etc. It turned out I had astma, which seemed at the time, the answer to all my illness. But unfortunately. It was not.
While my breathing got better, I remained very sick most of the time. I couldn’t work anymore, and the doctor confirmed my worst fear. My CFS was back, with a vengeance. Memories of eleven years ago, when I was first diagnosed came tumbling through my head, and I was just hoping it wouldn’t take as long as the last few times to crawl out of the shithole that is CFS.
I am now still in the process of slowly recovering from this huge setback, and to try and live with my illness while still maintaining a relatively normal lifestyle.

One of the reasons I started this blog was to focus on all the things I love about life, besides my illness. To see how many wonderful things life still has to offer. And to remind myself that I’m still the same person I’ve always been, despite being sick so often. This was basically the way I was regarding the whole issue of my illness, I knew it was there, but I preferred not to talk about it. Or not talk about it too much at least.
I was always afraid to draw too much attention to my illness. In fear of people only seeing me as ‘the sick girl’. But also in fear of people thinking I was trying to get some special attention from it.

But really, that’s just denying a part of me.
A pretty big part of me, especially now that I’m at one of the lowest points I’ve been in a while, psychically speaking.

So I’ve decided to become more open about it. Talk about it on my blog, share my experiences more with my friends, family and with the World Wide Web. And hopefully getting a little more understanding by sharing this. Cause really, that’s all any patient with this disease wants. A little understanding.

So here we are, at the first of a few blog posts about this illness I’ve had for the past 11 years. Let’s make this first one a little introduction, shall we?!


Yeah, awesome names right? The two names of the disease are as far away as could be.
Chronic Fatigue Syndrome – “So what? You’re just a little tired of something?!”
Myalgic Encephalomyelitis – “OMG what a horrible sounding latin-or-something-name! YOU MUST BE CLOSE TO DEATH!”
Uhm, well, no, neither of those is correct. Somewhere in between would be best I guess, oh and definitely without the Death part.

Wikipedia, the world’s most truthful and trustworthy encyclopedia *coughs*, describes it as follows.
“Chronic fatigue syndrome (CFS) is the most common name used to designate a significantly debilitating medical disorder or group of disorders generally defined by persistent fatigue accompanied by other specific symptoms for a minimum of six months in adults (and 3 months in children or adolescents), (…) There is no diagnostic laboratory test or biomarker for CFS.”

What this basically means, is that you have to have a list of symptoms for at least six months to be diagnosed with CFS. There is no test to prove you have this disease. Which makes it a ‘garbage-can-diagnose’, as I like to call it. The doctors do a bunch of tests of other diseases that might have the same symptoms, and if none of those are found, than you’re stuck with this one. Which means you’re screwed if you ever have any legal or other official issues regarding your illness. Because you can’t ‘prove’ that you’re sick. But that’s just a frustration, and we’re nowhere near that part yet. 😉

Right. So. A list of symptoms instead of a proper test is what they use to diagnose the disease. Here is the Dutch list for CFS.
“Fatigue – without psychical explanation, which has not been present for the entire life of the patient, which is not the cause of any long-term or straining effort, which hardly decreases with periods of rest, which limits the functioning of the patient severely.
Other symptoms (patient needs at least four or more of these, present during the fatigue and not before, for at least six months) – memory loss or a decrease of the memory, decrease of concentration, throat aches, sensitive neck- or armpit glands, muscle aches, joint aches, headaches, un-refreshing sleep, a feeling of exhaustion (malaise) that last 24 hours or longer after any activity that takes effort.
Exclusion criteria (symptoms may not be a results of any of the following) – any other condition which may explain the fatigue, a psychotic, severe or bipolar depression (but not an uncomplicated depression), dementia, boulimia or anorexia nervosa, alcohol- or drugabuse, severe obesity.”

(translated into English from ‘omgaan met chronische vermoeidheid’ written by Jaap Spaans)

There is no patient with the exact same symptoms. Probably because there is no real test for the disease. Some people have gotten this diagnosis, while really they have a completely different illness. They find out after years of trying to cope with CFS/ME that they really have Lime’s disease, Lupus, severe depression, diabetes or other illnesses.
Yes, the medical world sure seems to know an awful lot about the human body after many years of studying it. *hint sarcasm hint*

Okay, so, no death or anything horrible like that, but quite a lot of really annoying symptoms/pains/illnesses that screw up your everyday life severely. But what’s the cause?!
Yeah, this is where it becomes a little tricky. Like I said there is no test to prove that you have CFS/ME. And as of today there is no known cause.

Wait what? You’re sick all the motherf*cking time, but doctors can’t find what’s causing it?!
Uh, yeah, that sounds about right.

But wait, didn’t they recently cure someone of Aids? How can they not cure being tired all the time?!
Yeah, well, beats me! =’)

There are some studies being done to the subject, and there is debate among the medical world about what causes CFS/ME.
Here are some things ‘they’ (the all knowing science people) are talking about.

“A combination of the following things.
– Genetic factors
– Brain abnormalities
– A hyper-reactive immune system
– Viral or other infectious agents
– Psychiatric or emotional conditions

Genetic Defects
CFS has been linked with genes involved in the hypothalamic-pituitary-adrenal axis and the sympathetic nervous system. These genes control response to trauma, injury, and other stressful events. Nevertheless, researchers have been unable to determine how the genetic variations influence symptoms.

Central Nervous System and Hormone Abnormalities
Abnormal levels of certain chemicals regulated in the brain system known as the hypothalamus-pituitary-adrenal (HPA) axis have been proposed as a cause of CFS. This system controls important functions, including sleep, stress response, and depression. Of particular interest to researchers are the following chemicals and other factors controlled by the HPA axis:
– Changes in Important Neurotransmitters.
– Stress Hormone Deficiencies.
– Disturbed Circadian Rhythms.

Because most of the features of CFS resemble those of a lingering viral illness, many researchers have focused on the possibility that a virus or some other infectious agent causes the syndrome in some cases.
Still, not all CFS patients show signs of infection. Although experts have long been divided on whether infections play any role in this disorder, subtypes of viral-related and non-viral CFS may both exist.

The theory that CFS has a viral cause is not based on hard evidence, but on various observations that suggest an association

Immune System Abnormalities
CFS has sometimes been referred to as the “chronic fatigue immune dysfunction syndrome.” A number of studies have found many irregularities of the immune system. Some components appear to be over-reactive, while others appear to be under-reactive, but no consistent picture has emerged to explain CFS as a disease of the immune system.
Allergies. Some studies have reported that a majority of CFS patients have allergies to foods, pollen, metals (such as nickel or mercury), or other substances. One theory is that allergens, like viral infections, may trigger a cascade of immune abnormalities leading to CFS. However, most allergic people do not have CFS.
Autoimmune Abnormalities. The risk profile for chronic fatigue syndrome is similar to the risk profiles for a number of autoimmune diseases. Studies are inconsistent, however, in reporting the presence of autoantibodies (antibodies that attack the body’s own tissues) in CFS, and the disease is unlikely to be due to autoimmunity.

Low Blood Pressure

Psychological Factors

(causes and explanations taken from this website, for more information I suggest you read this entire article )

So basically it’s either all in your head, you have a virus that doesn’t want to leave your body or your immune system doesn’t work properly. Or all of the above or a combination of some of the above. But nothing is proven, and there are many debates about it in the medical world. A lot of uncertainty all around, as you can imagine.


Well this is enough of a tl/dr text by now, so I’ll leave it at this.
I’ll post more personal stories about my experiences with this illness in the next few posts. To shed some light on my own story, and hopefully connect with other people going through the same.

If you have any questions, feel free to ask, perhaps I can include them in upcoming posts!


5 thoughts on “How To: Live With CFS/ME. Part one.

  1. Ik heb het al veel vaker gezegd, maar ik vind je echt een kanjer dat je zo over je ziek zijn kunt praten (en kanjer is een raar woord, maar wel complimenteus denk ik dan maar) Het maakte me verdrietig om te lezen, confronterend om weer alle symptomen bij elkaar te zien. Realiserend hoe kut het is en tegelijkertijd wetend hoe geluk ik heb dat het nu goed gaat.
    Ik kan voor jou niets doen, behalve mijn ervaring delen, zeggen dat het beter word. Want dat gaat het worden. Ik weet niet hoezo het bij mij nu beter gaat. Ben ik beter naar mijn lichaam gaan luisteren? heeft het hardlopen gewerkt? Komt het omdat ik mijn depressie heb aangepakt? Komt het door de vitamine C tabletten die ik ben gaan slikken? Het kan vanalles zijn, het gaat erom dat het beter gaat.
    Maar ook nog steeds met vallen en opstaan. En ook ondanks dat ik mijzelf beter verklaart heb, heb ik nog steeds last van de symptomen. Ik probeer er het beste van te maken, net als jij.
    Soms kan ik er wel om lachen,als ik weer een film ga kijken waar ik 100 % zeker van ben dat ik hem niet gezien heb en dat wanneer ik kijk, ik hem toch wel gezien blijk te hebben (dat gebeurt me met series en films bijna dagelijks, ik heb like no memorie of alles wat ik in 2007/2008/2009 heb gezien, tenzij ik het meermaal gezien heb) maar dat gebeurde me deze week met een film die ik in 2010 gezien moet hebben, dat was wel even schrikken!

    Achjah, in ieder geval, het maakt veel bij me los.We zijn zo hetzelfde soms, dat ik er van schrik.

    1. Ja, ik vind dat wel fijn, dat jij het tenminste echt begrijpt ^-^
      En dat concentratie en geheugenverlies vind ik altijd zo onwijs kut -_- maar wel handig dat je dan soms films nog een keer voor t eerst kan zien! Hahaha =D

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