Category: Opinion

CFSAC – to be or not to be

CFSAC- Let’s Take Action ME community members were caught off guard when the proposed 2016 Senate appropriations bill zeroed out CDC funding for CFS research. Several advocates scrambled to address this and their efforts to be heard appear to have paid off. But scrambling is not something ME advocates can, or should do. Health- and resource-

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Hidden Faces of M.E.

UK charity Action for M.E. are this week hosting a social media campaign and its aim is to raise awareness of M.E. as a hidden illness among as wide an audience as possible, and to help people understand what having M.E. feels like. The all important message being, ‘there is a hidden face of M.E.

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Julie Rehmeyer on Science and ME/CFS

Julie Rehmeyer on Science and ME/CFS Julie Rehmeyer, an award-winning science and math writer, was recently interviewed about how her experience with ME/CFS has affected her perspective on science. The insightful piece ranges from a discussion of how the CDC’s treatment of ME/CFS has lessened her trust of institutions of science to how her experiences have

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Should we oppose the Senate proposal to cut CDC funding to zero?

Jennie Spotila is an ME/CFS patient and advocate who has done extensive research on government funding for CFS. She recently discovered that the latest Senate committee report for CDC appropriations appears to recommend completely defunding CFS research. She points out that the cut is not a done deal as the House and Senate need to

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Cort Johnson: Fibromyalgia and the 'Advocacy Gap'

Cort Johnson has a fascinating new post up about the rise and fall of Fibromyalgia funding over the last fifteen years – even less is spent per patient on Fibromyalgia research than ME and CFS. He thinks in the issue is an “advocacy gap”:   As funding for pain research increased, funding for FM research, however, has

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News from Wales

The situation for people with ME in Wales is extremely difficult. This is because there is no Specialist Care for people and the GPs do not have any training about the condition during their training. It is left up to them to find out about the condition if they need to or want to. Therefore

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