community, creative writing, M.E, Poetry

Their Final Performance: ProtestNICE4ME

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1.1.   Who better than those who profess to know minds to twist our actions? Those that have plundered the void to plug with their confidence (tricks). To keep those of us blighted by secrets locked tight in our cells bombarded by their (un)veiled attacks. To call us the aggressors in their pursuit of (ego) advances by the belief of their Lie? To play powerless in their stories, and clothe themselves in the torn robes of their victims? 

1.2   What a alluring fantasy world they want us to inhabit! The monsters are real if we would just admit that, inside. 

1.3   Who better to run scared from the bitter cold of a scalpel. To whisper to friends in green rooms and wood-pannelled halls. To find the willing and the weak (like them) to cling to their fables? 

1.4   Who better than you to think your eminence means anything? Who better to finally fail as your tales of the expected, that still curl eagerly around inky fingers, that feed your full bellies (and wallets), succumb to irrelevance and crumble around you. 

1.5   You are forced from the spotlight. Truth now takes the stage. 


I have not had much opportunity or available energy for poetry lately. What is in the tank has been reserved for supporting people with Myalgic Encephalomyelitis otherwise mislabelled as Chronic Fatigue Syndrome. I’ve been making my voice heard and amplifying voices of others as well as taking consciously chosen rest to recover energy expended. I have also deteriorated since my last post finding that sitting upright without my neck supported was causing me to feel dizzy and sick until I lay flat. That is also not conducive to the writing experience.

Last night though, after some inadvertent caffeinated tea, I was awake until 2am reflecting on today and the planned protest at NICE (National Institute for Health and Care Excellence) against the pausing of the ME/CFS guidelines on 18th August. (See previous post) The impact of this on people with ME is difficult to quantify. We feel lost, betrayed and abandoned and we are struggling to understand why. As happens in a void stories circulate. Those who have a vested interest in keeping the status quo have worm tongued their way into willing media articles, some more vile that others, in perpetuating the myth of the biopsychosocial (BPS)model of treatment. NICE and the ME Charities have stayed quiet, no doubt trying to do the right thing, but unfortunately this gives these false narratives time to take root. Those who have dominated ME/CFS with psychological bias will feed journalists with stories of patient activists attempting to neuter their victims and make sure our voices are silenced by their attacks. They will, being experts of psychology, know exactly how to turn the tables and blame the victim, attempt to diminish our lived experience and rebrand our sense of injustice as mental delusion.

I will not play that game any more. I will wear my patient activist label with pride.

This poem is for them. I called it Their Final Performance as, even though they are more adept at storytelling, they know their run on the stage is over. NICE have seen the evidence, we have seen the evidence, and it can no longer be written over with activity journals and poor illness beliefs. It is shining through, as truth always does.

It is also our time in the spotlight today at this protest. We will be noisy both in person and on-line. We will be there to show the real victims of harm, to tell our stories, to make it known their theories have no place in our treatment.

Evidence over eminence. Your time has come.


A special thank you to Steve Topple and Nicola Jeffrey at The Chronic Collaboration for organisation this protest today through pure kindness and desire to help. You are absolutely heroes to me. I can’t thank you enough. For more information about the The Chronic Collaboration and the excellent journalistic work of Steve Topple please click here

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