Category Archives: Opinion

The Cut

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Are you prepared for an 18% reduction in ME spending? I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, ...

Is SIRS, CARS, MARS – and now PICS – causing the “CHAOS” in ME/CFS?

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Could ME/CFS be the post SIRS ‘immune paralysis’ state of CARS (Compensatory Anti-Inflammatory Response Syndrome)? Or MARS (mixed antagonists response syndrome)? ...

Funding for U.S. research centers falls way short

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Government funding for research centers and a data management center for ME/CFS has been made public, and the amount of funding allocated is infuriatingly small. The National Institute of Health (NIH) plans to issue two Requests for Application (RFAs) in January to fund 2-3 collaborative research centers and a data management ...
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Epic Measures: How One Man Changed the World (and Possibly ME/CFS and FM As Well)

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Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) have a long, long way to go before they get the attention and resources they deserve. It would take a heroic leap to quickly achieve what people with these diseases deserve and what the diseases themselves - given their economic costs / burdens ...
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US: Read Lily Chu’s CFSAC Testimony

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Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public ...

Fluge, Mella, and Armstrong: more support for disordered metabolism in ME patients

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One of the frequent complaints of patients, researchers, and policymakers about ME research is that the findings are scattered, and the studies, small.  One group will discover X is elevated in 20 ME patients, only to find that when the test is done on another 13 patients two years down ...
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New study on CFS/ME in adolescents in Spain: We come in PACE

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This is the "new" studie some doctors are trying to move around Spain with the recomendations of using CBT and GET in patients of CFS at the age range of 12-17 ...
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Thoughts on NIH speakers from Dr. Zaher Nahle

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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 ...
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Madness

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We ask for attention and compassion with energy we don't have. Often this is misunderstood ...
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No more ‘should’: the aim to stop punishing myself for having ME

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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 ...
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