Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a very long and confusing term for an illness that is itself still shrouded in a lot of mist. Many of us deal with similar symptoms, such as fatigue, headaches, muscle aches and what we call brain fog, but a biological cause is yet to be found and a clear cause or treatment is not available.

I will try to keep it short, but I felt a little background on the condition was necessary. Foremost, ME/CFS is a disabling and complex illness. It is a multi-system disease with many symptoms that often change over time and vary from patient to patient. The most common symptoms of ME/CFS are post-exertional malaise (which means a worsening of symptoms after exertion, which can be as a minimal as brushing one’s teeth to a more extreme one like a walk, but also involves mental exertion, such as stress or even reading), a profound sense of fatigue, brain fog (cognitive issues, such as lacking concentration, focus and processing skills), muscle pains and fevers. These are just a few of the many, many symptoms those of us with the illness experience. Though as I said, their severity can vary, from day to day, from week to week, from year to year.

The cause of ME/CFS is currently unknown, but a combination of genetic and environmental factors appear to be relevant. There are no specific diagnostic tests or approved treatments available. Though a test is coming! Dr Ron Davis is doing incredible work, so are different teams from all over the world! But a fact is: research is still hard to come by and funding even harder.

Which makes it even more difficult to say that ME/CFS is a disease that affects at least twenty million people all across the world. Imagine that! Twenty. Million. People. That is a whole lot of human beings, a whole lot of lives and even more friends and families affected – and trust me, it affects everyone around us too. But as mentioned, relatively there is not much research being done.

I won’t get into the history of ME, because quite frankly, the disease’s medical history is a deeply depressing tale (I’ll give you a hint though: in the 1950s it was referred to as ‘female hysteria’. Hmm imagine that..). No, I want to look ahead and focus on current and any future patients who could so greatly benefit from research into this debilitating disease.

And to show you how debilitating and life-altering it is, I’m going to share a bit of my life with ME with you. I am lucky that I am currently not bedbound by the disease. I can leave my house on occasion and even write on good days – sometimes even on bad ones. Wonderful! This is why I can bring this fundraiser to you. I currently have the energy to do so.

However, many patients are unable to invest in raising awareness for their own illness. That is why I’m doing this. Because we must do it for them and what we can do is raise funding. Money. Good old hard cash. To fund research. To get to the bottom of this disease. To get a test. To get a treatment. To get – oh my, wouldn’t that be something! – a cure!

That is why I am sharing my story, even if some of you may have gotten sick of hearing me talk about it. But I must do so, to be a voice for those who can’t have theirs heard. To give the current patients and the next generations of patients who become ill and have no idea what is happening to them hope and make sure they no longer get mistreated by current misguided guidelines when it comes to this disease.

So, please read along the coming weeks about what it is like to live with this disease. Go to my Instagram and see what it is like. Expand your horizon if you are healthy or, if you yourself are a patient, come and see how you are not alone. Comment if you can, ask questions if you have any and please, support the people in your life who deal with chronic and invisible illness.

And if you would like to support the research into this illness – and are able to!!! –, please consider a donation to my fundraiser for Open Medicine Foundation, an organisation who I have been following for years, who do incredible work when it comes to the funding of research and raising awareness of ME/CFS, but also for fibromyalgia and Lyme disease, which all seem somewhat related diseases. More on my fundraiser: read my announcement post here.

DONATE HERE to my fundraiser. I’d be so grateful if you could, any small amount is welcome! If you are unable to, sharing is also a great way of raising awareness for the illness. You can do so via the buttons at the bottom of this page or on the fundraiser’s page.

Thank you!

Love, Sandra

5 thoughts on “MY ME/CFS FUNDRAISER: What is ME/CFS?

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