Category Archives: Opinion

7 Reasons for Why It’s #TimeForUnrest

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The #TimeForUnrest campaign has officially kicked off, and these are some of my reasons for for why it’s #TimeForUnrest. 1. People are dying ...

These Dangerous ME/CFS Exercise And Symptom Denial Trials Must Come To An End

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The most morally generous description I can give to the majority of exercise and symptom-denial medical trials performed on ME/CFS patients is 'torture born from ignorance'. Even if you were to describe the evidence of harm as a result of the treatments explored by these trials as preliminary and often ...

As Summer Ends, A Warning to NIH

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Johanna Kaiser, a person with ME, sent this open letter over Labor Day to the director of the National Institutes of Health (NIH), Dr. Francis Collins, and the director of National Institute of Neurological Disorders (NINDS) ...

Finding Connection within M.E.

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During the initial years of having Myalgic Encephalomyelitis (ME), it is common to watch all your interpersonal ties slowly dissolve. Being in my early 20s, those around me craved excitement, adventure, and new experiences. Those things I desired too, but little of which I could do or offer in my ...

Reading matters. Let’s hear it!

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The demise of my ability to read extensively is one of my greatest losses. I try, but pages petrify. A few paragraphs must do me now; some days a couple of lines. It's an issue many #pwme wrestle with, and contributes to our sense of separation ...

The Emotional Toll of Not Being Heard

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This story won’t be particularly unique or shocking to anyone living with ME. Every single one of us has a plethora of stories like this, and far worse than this. It has happened so many times over the last 11 years. What shocks me is the degree to which it ...

Transitioning from an Abled Life

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When a sudden and unexpected illness catapulted my life into a completely different path, life as I had come to know it, was irrevocably changed ...

We’re upright in all but body!

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#BedFest was quite the occasion. People appeared in PJ's, crumpled t-shirts, crochet vests, keen to address the wider world; people whose voices are seldom heard, called together by #MEAction and its volunteers to share music, art, photography and multifarious creativity and raise ME-Awareness. We didn't have to leave the house.. ...

Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I

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One of my deeply held personal values is that ALL people must be treated  respectfully…I have found that respectful, highly knowledgeable, forceful advocacy language that expresses the desperate needs of our community is the most effective. But please do not mistake my professional, respectful demeanor as anything less than a ...

The ME/CFS Biomarker Rollercoaster

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Biomarkers are a holy grail for ME/CFS because they have the potential to help diagnose disease, track disease progression or progress and help inform which treatments might help. The need for biomarkers is immense and researchers will identify many possible ones. It is encouraging that there have been more possible biomarker reports ...
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