Unity in activism: on abusive attacks within the ME community

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“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they cannot alter the state of facts and evidence.”
 
John Adams
 
“Coming together is a beginning. Keeping together is progress. Working together is success.”
 
–Henry Ford

In light of recent gratuitous and profane attacks on ME activist Jeannette Burmeister as well as others: #MEAction would like to reiterate that abuse and harassment of persons with ME is wholly unacceptable–whether is it on an individual basis or the institutional abuse we all face.
We believe most ME activists, and healthy allies, show extraordinary care and support of their own. Recently, several long time advocates and innocent bystanders have become the subject of vitriolic profanity. This is completely unacceptable and should not be tolerated.
In any movement, especially where so little has been done by our governments to fund genuine biomedical research, there are bound to be vigorous disagreements about tactics, strategy, and even overall vision. There are many styles of activism and no one should face abuse because their personal style differs from an ideal another deems most helpful. Profanity and targeted abuse are never appropriate. If, as human beings, we must make judgments, let them be based not on styles, but on actions.
In short, we are entitled to think for ourselves and not feel that we will be ostracized from the ME community for having either too radical or too moderate an approach. If we let the facts speak for themselves and discuss them in a logical and genuine dialogue, we believe this will lead to the best activism and best results for us all. As a diverse community, complete agreement may not be attainable, but even so, let us pursue our parallel paths in good humor and good faith.
Our common goal continues to be biomedical research and a cure. To achieve these we will need to stand up for ourselves. With orthostatic intolerance and hypovolemia, this may never be the easiest option, but we believe it to be the best one.

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4 thoughts on “Unity in activism: on abusive attacks within the ME community”

  1. Words of wisdom we must heed if we are to succeed in this battle.
    “We must all hang together or most assuredly we will all hang separately.” Benjamin Franklin at the signing of the US Declaration of independence

  2. If you are looking from the outside, it’s easy to think what is all this about. People using string language to disagree about matters which could be settled in a friendly fashion.
    Problem is individuals are stuck at home, hoping for good news & over reacting to what will seem less important in time.

  3. Ellen Goudsmit

    I’ve waited for more than a decade for my tormentors to apologise and acknowledge that they misrepresented my views and work. To put things right. They never did. They didn’t remove their posts which undermined my reputation as a competent and honest scientist. There was so much bullying, groups were afraid to use me as an advisor to challenge the CBT fanclub. they acted without specialist knowledge and White and co blew their arguments away. A mediator asked one tormentor to put things right but he refused.
    We can stand together, or as in the past, stay divided. We can stand by and watch good people being attacked, their reputations trashed, making them impotent to help PWME at the level of NICE, fund-granting bodies and journal level. I’ve had to watch a load of psychobabble being accepted because the boss googled me and saw I was a dubious scientist. Except I wasn’t. It’s good I work in other fields where I am perceived as a competent scientist. but it depresses me that I wasn’t able to help you more, because of a gang of four. And those who stood by and watched.

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