A while ago, an inspiring story ran about a researcher who, every time she was harassed online, redirected her feelings into something more positive and enduring by taking some time to create a new Wikipedia page for an accomplished woman in science who didn’t already have a page.
It reminded me of the ME/CFS patient community. As patients, we’re often justifiably frustrated at attacks we’re subjected to or situations that arise that we feel that we cannot control. But how can we redirect that into something that moves us forward, instead of risking it dragging us down and making us lose sight of our goals for better treatment?
Can we turn that frustration into the power to build something enduring?
I realized that each time there was an attack on the patient community, or when another bad piece of press or research appeared, I’d feel furious at the apparent injustice, but at a loss what to do. I started to say to myself, “I can’t fix that, but what can I do?” — and not just in that moment, but for the long term, to help build something valuable.
As a result I became one of the early MEpedia contributors. Instead of getting angry and feeling powerless in the face of events outside of my control, I seized control by opening a page on MEpedia and clicking “edit” to make the page better in some small way, for the benefit of patients, doctors, researchers, carers, family and journalists who would read it in the future.
My intent was to take the knowledge and perspective I have, and share it. If others do the same, we can create a goldmine of knowledge that does not exist anywhere else.
Initially I had little idea what I was doing and made mistakes, but none mattered and I quickly became confident that although there were many pages I couldn’t usefully improve, there were many I could, and I focused on them.
I created a page for a doctor I knew a little about, I added his website, Twitter and Facebook links, and linked to his Wikipedia page. Later I added a photo, and an interview with the doctor that I saw on YouTube. Then another day, I saw someone mention a study on Twitter about B cells: I don’t know anything much about B cells but I knew there was a page on MEpedia about them, and the study wasn’t listed, so I added it. I noticed there was no link to the Wikipedia page for B cells, so I added that too. Later I added some other studies I found with a quick search on PubMed.
Every time I make an edit like this, I move the page, and the MEpedia project, forward just a little bit, which felt very satisfying.
The improvements are cumulative, made up of tiny steps, and although it’s pleasing to see them combine to show substantial progress, what’s even better is to then see others (who have a different perspective and knowledge) spontaneously edit the page afterwards and make further small improvements that either correct mistakes I made or add extra useful information.
It is collaboration without coordination. The wiki system allows patients to work together without the normal baggage such as plans, managers, hierarchies, defined roles, meetings and commitments that is normally required. All I have to do to edit a page is click the “edit” button!
So when we feel down, or angry, or frustrated or powerless, let’s refocus a little of our precious energy to move our community forward towards better research, understanding and treatment. Let’s collate all the best resources from our community — the studies, the blogs, the articles, the doctors, the researchers, the patient groups, the healthcare and political situation in each country.
Let’s build resources to help carers care, to help doctors treat, to help new researchers get up to speed, and help journalists write more informed articles. With MEpedia you can dip in and out on your own schedule.
Please take a few minutes a week to look at the “Recent changes” page on MEpedia , or click to see a random page, and read it and improve it with even just a sentence, a typo correction or by adding a link. If you see a new study, article, blog interview or something notable on social media, forums, or here on #MEAction in the news, check whether it’s in MEpedia already: if not, add it! There’s also a priority list where you can see what particularly needs doing.
Over time, editing will get easier and you can do more. It is probably much easier than you think, so open a page and click “edit” today!
MEpedia is fast becoming a valuable resource, with more contributors joining the project and more visitors reading its pages, but we need your help. Our strength is in our numbers — there are large numbers of ME patients, so each of us contributing a little means collectively we can achieve a lot. Together we are stronger. The more we are each able to contribute (within our limits) the sooner we will see change.
Next time you feel exasperated at some attack on patients or event outside your control, please open MEpedia, hit “edit” and use that magical alchemy to convert that energy into something positive that will benefit our community for years to come.
Please follow MEpedia on Twitter and Facebook. To get help with editing articles, join the MEpedia contributor forum. You’ll be very welcome!
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the