Featured opinion Archives

Thoughts on NIH speakers from Dr. Zaher Nahle

November 15, 2016 6 Comments

It was truly unsettling to learn about the news of an invited speaker lecturing at the National Institutes of Health (NIH) on November 9, 2016. For decades, the speaker has been a staunch adversary of studying the pathophysiology of ME/CFS and refuses to acknowledge its root cause. I have written many times previously, including in an editorial in March of this year, on the aftermath of the revitalization of the Trans-NIH ME/CFS Working Group—specifically on the perils caused by what I then called “ME/CFS deniers” and “psychosomatization sympathizers.” We will not dedicate additional time to these individuals or elaborate on their misguided theories on our pages other than to make the following three points…

No more 'should': the aim to stop punishing myself for having ME

October 15, 2016 5 Comments

Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold of all we can of our lives, I’m becoming aware that I for one often get this fight tangled up with a lot of damaging self-judgement.

Increasing Efficacy of the CDC’s ME/CFS Educational Program

October 13, 2016 4 Comments

INTRODUCTION The Centers for Disease Control (CDC) is revising and creating new educational materials for its Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) educational program. The hope is that this fourth try at producing ME/CFS educational materials will result in equality of care for ME/CFS patients and they will, for the first time, experience appropriate care throughout

The PACE Trial Fiasco

September 22, 2016 5 Comments

This study is the worst kind of science, and noticing flaws does not mean we are sociopaths or psychopaths. Neither does it mean we’re close-minded members of a group that’s only interested in our own views.

Canada: Research Reviewers as Disease Denialists

September 5, 2016 5 Comments

Press Release Toronto – August 28, 2016 – “This is ludicrous!” writes Dr. Ian Hyams about the Canadian Institute of Health Research (CIHR) decision to deny funding for a networking grant for the neurological disease Myalgic Encephalomyelitis (ME). Dr. Hyams, Medical Director of the Chronic Pain and Fatigue Clinic, expressed further concern stating that “the

Canada: officials turn down grant app because CFS "isn't real"

August 26, 2016 51 Comments

For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The IMHA [the Institute of Musculoskeletal Health and Arthritis] has committed to supporting the creation of a national network for translational research in ME/CFS in 2016-2017. This network will facilitate capacity building and provide a forum to

Empty shoes

August 15, 2016 2 Comments

A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home. For instance about birds or cats visiting our garden (preferably not at the same time), books, music or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?

In Memory of Tom Jarrett

July 28, 2016 4 Comments

I met Tom Jarrett once, and I remember him through an empty chair.

The alchemy of turning frustration into power

July 14, 2016 2 Comments

when we feel down, or angry, or frustrated or powerless, let’s refocus a little of our precious energy to move our community forward towards better research, understanding and treatment. Let’s collate all the best resources from our community — the studies, the blogs, the articles, the doctors, the researchers, the patient groups, the healthcare and political situation in each country!

Speeches from the Front Lines of #MillionsMissing: Sonya

June 2, 2016 No Comments

Sonya Myalgic Encephalomyelitis (ME) Patient 5/25/16 Washington, DC #MillionsMissing Protest Speech Transcript In April of 2011, I was thriving and loving life. At the peak of my career, working my dream job in the U.S. Foreign Service, only 39 years old but already the equivalent of a Colonel in the military, I was successful, healthy,

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