This slogan was used in the 2008 US presidential campaign by Barack Obama. It never made much of an impression on me. I want to hear politicians say “Yes I will do that”, “I will fix that” or “It’s my number one priority”. A “Yes, we can” sounds too non-committal to me. You can always daydream about the things you can or they should do, it’s only the actual doing it that makes the difference. What does this have to do with ME/CFS.
ME/CFS has been known, under various names, for decades and yet we are nowhere near getting the attention we deserve. Look around at all the attention going to HIV, breastcancer, cruelty to animals, endangered species, … Those are worthy causes and they deserve the attention and funding, but what’s wrong with our cause?
The lack of attention and funding cannot be explained by indifference for an invisible disease. The severity of this disease and the impact on patients’ lives are actively downplayed. There is no denying it: the juggling with the many sets of criteria, the word-games, the chronic fatigue with or without syndrome attached to it, the bad science of GET and CBT, … it is all there. To a certain extent, then it crosses a boundary and enters the realm of conspiracy theories. I don’t like conspiracy theories because I find them disempowering and a waste of spoons; complaining about them isn’t going to get us anywhere.
When you do think in terms of opposition, than that opposition, the biopsychosocial lobby, is a fierce one. For decades they have feasted on government funding (aka taxpayers’ money), they have weaved their web of lies, damned lies and statistics, they have perfected their tactics of smoke and mirrors, thinking they are safe working under the government’s umbrella of protection, authority and manna, they publish their papers peer-reviewed journals by like-minded colleagues, spread the holy word on conferences, and have the ear of the powers that be.
We are up against psychiatrists, psychologists, some medical doctors, ignorance, and indifference. What prevents us to raise some hell are the very symptoms of this disease: lack of energy, extreme fatigue, brainfog, muscle and joint pains, being homebound or even bedridden, … you know the list. How can we possibly overcome such a mighty adversary?
- We hold the moral high ground (if we refrain from conspiracy theories and stop accusing scientists who come up with negative findings of foul play).
- We outnumber them.
- We have medical doctors, researchers, psychiatrists and psychologists on our side too.
- We have a better skill set. ME/CFS doesn’t discriminate. We number teachers, nurses, engineers, housewives, technicians, chemists, biologists, accountants, pharmacists, medical doctors, secretaries, translators, psychiatrists, psychologists, journalists, yoga/teachers, scientists, linguists, computer experts, physiotherapists, managers, programmers, sales representatives, lawyers, politicians, writers, painters, photographers, musicians and even comedians.
Has any ME/CFS organization ever considered using all those skills of patients to their full potential?
What do I believe are our chances?
- Despite the brainfog, can we outsmart them? Yes, we can!
- Despite the fatigue, can we outmaneuver them? Yes, we can!
- Despite the disabilities, can we take them on? Yes, we can!
- Despite everything, can we overcome? Yes, we can!
Why haven’t we done so already? Will we ever? I cannot answer those questions. However, there is another question between the “Can we?” and “Will we?” that needs answering and one that has kept me intrigued since the start of this year, namely “How?” Think of everything that is available to us for activism, to campaign and raise awareness: access to scientific articles, Skype, YouTube, email, social media, free software (blog, forum, content and project management), … and all those skills and talents. When you look at all those means and methods there are several questions that you can ask:
- Which ones are the most effective?
- Which ones are the least effective?
- Which ones should we learn to use more effectively?
- Which ones can backfire on us?
- Which ones have we overlooked?
I wish I had the answers already, but I don’t. I have some ideas, an outline for a series of articles and a to-read list of 10 books so far on a wide variety of topics including science, psychology, organizing, management, social media and even warfare. Effectiveness and organizational structure came up in a discussion with some fellow patients recently. They didn’t agree me with because they believe there is no time for all of that, the time to act is now. I think we both have a point. Some actions can’t wait, but those questions need answering. The persons doing the actions and the persons trying to find the answers don’t need to be the same ones.
This is a long-term project. I estimate it is going to take me 4-6 months before I can start publishing those articles. I hope some of you will try to find answers too, looking in different places, compiling a book list of your own, jotting down your ideas, and publishing them. Maybe later this year we can compare notes.
|Feeling sorry for yourself,
and your present condition,
is not only a waste of energy
but the worst habit you could possibly have.