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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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April 2016 Letter from Dr. Zaher Nahle


Fine, thank you
Zaher Nahle said:
I am thrilled to share with you that the Solve ME/CFS Initiative has received a coveted award from the Robert Wood Johnson Foundation (RWJF) and Genetic Alliance to boost our BioBank services and create a sophisticated Patient Registry for ME/CFS.

This grant award will make it possible for us to launch a truly national, state-of-the-art patient registry for the disease, which remains an unmet and urgent need in the community. You can read more about the award in this issue, and we’ll be providing updates as we roll out this new portal in the months ahead.

On the topic of research improvements, I am always encouraged when there is a new investment from the NIH in ME/CFS, as they recently conveyed in their Notice of Availability of Administrative Supplements on ME/CFS.

According to the NIH, the Administrative Supplements “are intended to expand existing research on ME/CFS, or utilize and apply a new technology to study ME/CFS through supplements to NIH-funded grant awards.” While this effort by the NIH to “bolster research on ME/CFS” is promising, it is perhaps better on paper than in practice...

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senior member
Concord, NH
Wonder when someone is going to get back to me on what form, if any?, I need to have my Dr fill out. So I can be a member of Solve Biobank!