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Divisiveness and Infighting in the ME/CFS Community

I feel ashamed. Not of any one individual out there but of the ME/CFS community as a whole for what some of us have done to Jen Brea. It is truly shameful and we should all feel this way.

She has sacrificed so much, maybe more than any other ME/CFS patient in the history of this illness to spreading awarenes - making a feature award winning documentary film and starting and leading MEaction. She is also more recently trying to help figure out the newly discovered cranial issues that we now know can cause ME/CFS. She is highly intelligent and spends enormous amounts of time and energy pouring through literature and scientific studies looking for answers. She consults with a specialist Doctor about her ideas and is always very careful to tell people that she is not a doctor and urges people to seek advice from a medical professional. This is responsible and productive.

My father Ron Davis has spoken with her about her ideas and thinks they are legitimate hypotheses and very well thought out. Furthermore, they are ideas and connections that no one has come up with before.

These are very good things for all of us. She is an incredible light and force of progress for this illness.

And yet a group of ME/CFS patients relentlessly attack her personally for her ideas and God knows what else to the extent that she is so exhausted she is stepping down from director of MEaction. This is despicable and simply unacceptable if we ever want to be cured of this illness.

Many of these same people who have attacked Jen seem to also "know" what causes ME/CFS and attack anyone with other ideas. I’ve got news for these people: YOU HAVE NO FUCKING CLUE. You are not an educated scientist; Even the world renowned scientists who are working on figuring out ME/CFS don’t know yet. There was a time when it was maybe useful for ME/CFS patients to be trying to figure out the illness themselves and come up with theories because no one else was. It is still useful to some extent but times have changed. We now have renowned scientists all over the world working full time to figure out the cause of ME/CFS and find a cure as fast as possible.

It can still be useful for intelligent patients like Jen to investigate open-mindedly and give these researchers new ideas but like Jen, we have to leave it to the highly educated, experienced, award winning researchers to actually figure out what the causes are.

ME/CFS has a long, pathetic history of petty infighting and division over insignificant matters. Just a few years ago Cort Johnson was forced out of the forum Phoenix Rising he created and had to start a new website for his incredible journalism about ME/CFS. This has left Cort with a smaller audience and Phoenix Rising with a serious lack of content. I don’t care why this happened, I don’t even want to know. It’s just shameful and unacceptable for this kind of thing to be happening in a patient population that needs every bit of possible momentum and awareness to have a chance at a cure. That’s what we all want right? Because the actions of some ME/CFS patients are hindering progress towards a cure and setting our advances back years.

These are just two examples, there are far too many stories like this in the history of ME/CFS to tell or even count. And these things don’t happen with other illnesses.

Part of the reason for this is that since there is so little funding for ME/CFS, there is no organization that has power and authority to set the messaging, tone and public relations for this illness. So everyday people wind up capable of having a much louder voice than those with other illnesses which have such organizations. But you all have the power to choose who to be and how to act.

What keeps happening to exemplary people in this community like Cort Johnson and Jen Brea cannot continue. They are our leaders, or voice, our hope. If you want to help, then think about what is actually good for ME/CFS and put your energy into that instead of harming our progress for the sake of your ego or emotional needs.

We must also remain open minded. Do we not want to find out the real cure or just validate our own egos? I want to know the truth whatever it is even if it flies in the face of all my own theories.

Stop the self righteous, arrogant bickering, fighting, personal attacks and divisive tactics.

Please. Think before you act. Treat fellow ME/CFS patients with respect. Stay open minded. Don’t engage in actions that divide us and denigrate our leaders.

Let’s come together and work together for the common goal of ending ME/CFS. I know you are all alone and desperate. But I promise you significant progress is being made. Let’s all contribute to that progress rather than hinder it.

Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.

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