• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

National Alliance for ME: Bring Your Outside Voices!


Senior Member
By Lois Ventura
For over 25 years the US government and its insurance lobbyists have succeeded in silencing people with ME. They learned quickly that it’s easy to silence a deathly ill population in which the very act of speaking worsens symptoms.

Not this time! On January 27, 2014, the US government and its contractor are going to remember who they work for!

The afternoon of Jan 27, 2014, the IOM committee “will have the opportunity to hear public comments” from a small handful of people. This pathetic 45 minutes of restricted time to speak is our government’s idea of stakeholder input and transparency, and will fulfill the committee’s requirement to include public comment.

This is an abuse of power. This entire clandestine process from its inception has been one abuse after another.

NOW is the time for the ME & CFS community to unite and show that, yes, we have an illness that makes our bodies weak, but WE ARE STRONG. We can accomplish from our sick beds what most people with a bad flu wouldn’t dare. Just think what we can and will do at the Keck Center in Washington DC on January 27!

Dr. Byron Hyde asserted more than 15 years ago, “Americans should shake up the [US government] definition and research committees,”and that definitions need to be in the hands of the experts, not government chosen committees of non-experts....
Last edited: