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CEO blog: walking through this world together

May 01, 2016

As we begin M.E. Awareness Month, our Chief Executive Sonya Chowdhury asks what single message the M.E. community can get behind to bring about effective change.

“Diversity is about all of us, and about us having to figure out how to walk through this world together.” (Jacqueline Woodson, US author)

I have written many times about the diverse nature of the M.E. community in my blogs, and the importance of collaboration. In fact, I probably drive my team and others crazy with my repeated reference to it. During the past three and half years at Action for M.E., the team and I have worked hard to bring people together, in spite of our differing views and perspectives.

I don’t need to tell readers of this blog what a vicious, undiscriminating, devastating illness M.E. is: many of you know all too well. It’s a huge, ugly, damaging illness that leaves many people in “a living death,” feeling trapped, isolated, alone and ignored. It steals many, many lives. On this, I am sure we agree.

However, I feel deeply saddened by the way we are allowing ourselves to continue to create a world where we fight each other rather than this insidious illness. I am deeply saddened to see individuals vilified because they enter into a debate on social media and have a differing opinion despite them also being at the mercy of this awful illness. I have seen them called traitors but nothing could be further from the truth: they are people suffering too. I am deeply saddened by the energy that goes into trying to prove that some of us conspire to prevent people with M.E. accessing the care and support they so desperately need.

I cannot bear to see people suffer so much and I’m certain that there are doctors, politicians and many other professionals that feel the same. We know that there is a desperate need for more research that will advance care in the clinical setting and we should not allow our differing views on cause, course and treatment to compound the problem or be an excuse for inaction.

So, as we begin another M.E. Awareness Month, I hope that we can find a way to work together, to channel our energies into creating real change. What single message can we get behind? We must move beyond the rhetoric to action, but action will only occur if we can find a way to walk through this world together.