For those of you who are curious, but can’t spend the time to read the entire blog post – here is the short version for nervous people:
12th May is CFS/CFIDS/ME day: we speak up about this illness, because we can; we do it to honour the people who have lost their lives to this illness, who have devoted their lives to it in research and in taking care of their loved-ones – and bec ause we believe that science will find the source of this illness, and with this also a cure.
On Florence Nightingale’s birthday we also celebrate the CFS/CFSID/ME day – if celebrate is the correct word. And then again, why not celebrate? We could and should celebrate the doctors, scientists, parents, husbands, wives, children and friends who work to get to the bottom of this illness and/or who care for a loved one with this illness . We celebrate those who raise awareness with their blogs/articles/organisation of walks/demonstrations etc., so that we keep talking about this illness and we speak up for those you cannot speak (any more).
I can only imagine how it feels to live and care for someone with CFS/CFIDS/ME, how you’re in constant worry (more or less depending on the degree of the illness and the actual state of health), how you gauge your answers/plans for weekend/evenings in order to not cause sadness and avoid making the person you care for over-stretch themselves. All these things I can only imagine, but I can tell you how it feels to live with it:
the constant pain, the insecurity that stems from not knowing how I’m going to feel tomorrow, or the discipline it takes to conserve the energy one has for the day – but it’s like I’d describe a beautiful meal – you’d have to eat it to appreciate it fully. The same principle applies here: you need to feel it to get an idea what it means to live with it.
If you’d like to do the brain gymnastics to try it out, the best would be to imagine having the flu. The flu – not a cold, because they feel different. With a cold you feel miserable, with the flu you feel crushed. You have fever, your head hurts, your muscles and bones hurt – up to the point where you don’t want to distinguish what exactly hurts and consider the term of ‘my whole body hurts’ an appropriate description. You brain goes into overdrive or under-drive depending on how your temperature rises or falls. Once you’ve put yourself in that situation, I’ll leave it to you how to imagine that one has to live like that every day of the year. How hard some basic tasks – like taking a shower – can become. A very good description of how it feels to live with limited energy is the ‘spoon theory’. At this point you’d probably have enough and decide to take off, because it’s hard to imagine that anyone could live like that. But people do, and this would appear to be only a mild form of it if you were to compare it to the severe cases who are bed-bound.
If you’ve read this far: congratulations the hard part is done! Now you know why, at least on one day each year, we need to speak up and remind the world that we deserve that investment in our illness, we deserve that someone will crack the code of it and find a way forward. Unfortunately, we still encounter an enormous amount of disbelieve and hubris – which in the case of the normal average person on the street is sort of understandable – but we also encounter it among scientists who I thought of as people driven by the idea of making the world a better place. Surely, scientists with that drive and commitment exist, I have seen them! But they are the minority. The more I learn about the history of medicine or science, the more I believe that those people always were the minority – just time proved they were right. We look at Ignaz Semmelweis who died before his discoveries about puerperal fever were appreciated or his precautions adhered to – even by colleagues who were leading scientists on the hygiene subject. Penicillin wasn’t too popular when Alexander Fleming first wrote about it – it took a while for it to be taken seriously. And those are only 2 examples from a long list.
Researchers will make mistakes when they conduct experiments. Mistakes can be made by jumping to conclusions too hastily, by not carrying out the research properly, or because the research question was biased from the outset by subjective opinion and prejudice. Most of the time a mistake is the result of incomplete information about the subject or because the necessary resources, support and mechanisms were limited. Generally, mistakes can be corrected or will self-correct when better resources, further investigations and knowledge is applied. There is never just one final truth in medical research – only knowledge up to a certain point.
This is really quite humbling, and the hubris we encounter from some scientists who think that they own the truth and profess it with such vehemence that everyone else feels flattened against a wall is surprising. The ‘it’s all in your head’ theory (not only for CFS/CFIDS/ME) is really ‘nice’ (because it’s always nice to blame the patient if the doctor can’t find what’s wrong), but in this case it has not proved right. I’m frankly tired of reading studies with biased research questions (“patients with CFS/CFIDS/ME are more tired in the evening after being stressed during the day”? Honestly? Who funds this?), research with (in my eyes) questionable ethics (lighting therapy for children), or research not building upon the appropriated international agreed base line criteria (e.g. “lets just ignore that this is a neurological illness and prove our point by excluding patients with neurological symptoms from our research group…”).
We need scientists who can think critically, who are not afraid to think outside of the box: creative scientists who push science forward. We need to speak up so that we are not forgotten and pushed to the side by people who are not interested in our needs or who don’t believe our words. We need to do this for those of us who can’t speak because they are too ill or already lost the battle. We need to speak up for Sophia Mirza, Lynn Gilderdale, for Emily Collingridge and also for the gravely affected Danish girl who is currently having to fight her government in order to not be put into a psychiatric ward against the explicit advice of her doctor: Karina Hansen.