As the 16 January, 2015 deadline for responding to the controversial P2P draft report draws near, and in the interests of balance and representing the whole community, Phoenix Rising presents two differing views on how to react. Today, Clark Ellis flags up important content to critique and to praise in the report. In her article, Gabby Klein makes the case for protesting
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New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer … Given the doubt, scepticism and even denial of benefits that often confronts ME/CFS patients, it’s not surprising that many patients crave clear-cut, objective evidence of physiological problems in the illness. Preferably something that will
ContinueCalifornia Conference Season 2014: Stanford Presents – Advances in Clinical Care and Translational Research
The 2014 conference season began yesterday at Stanford, home of Dr. Jose Montoya and his team, and searcher was there to provide a live commentary on the presentations from an all-star line-up of clinicians and scientists and which featured some exciting new developments on the research front… Stanford plays host to the first of five conferences over coming days, and,
ContinueAm I “Allergic to Life”?
Janis Bell (JanisB) reviews her personal journey of chronic illness after being inspired by a new article written by Jill Neimark and appearing online today in Discover magazine. It highlights the work of Dr Claudia Miller (pictured) and her theories relating to extreme chemical sensitivity and toxicants, a condition she terms, Toxicant-induced Loss of Tolerance or TILT. By the time
ContinueYou and M.E. Together – a Carer’s Story
by Charlotte Dyer In May 2005 I met my future husband. Living 200 miles apart we led a hectic life rushing between work and family and meeting each other at the weekends for 48 hours before starting all over again. Joel’s job was particularly demanding, meaning he often had to work until the early hours of the morning, snatching a
ContinueTalking with CFSAC – Views from the other side of the table
Gabby (Nielk) looks at the background to The Chronic Fatigue Syndrome Advisory Committee (CFSAC) and interviews 5 members including the Chairman… “Any committee is only as good as the most knowledgeable, determined and vigorous person on it. There must be somebody who provides the flame.” Lady Bird Johnson The mission of the U.S. Department of Health and Human Services (HHS)
ContinueAugust 8th – Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Gabby (Nielk) reports on the launch by The 25% Group of this special day of understanding and remembrance for those severely affected by ME I wrote the poem below about two years ago, in the midst of one of my harshest crashes. I was bedridden for many months. I was in pain most of the time and totally helpless and
Continue“Intimidated, Frightened, Threatened with Eviction” – CFSAC Spring 2013, Day Two
Mark Berry looks back on the second day of a controversial CFS Advisory Committee Meeting The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice a year, and the Spring 2013
ContinueMainstreaming ME Research: The 8th Invest in ME International ME Conference, 2013
Mark Berry reports from London on the 8th Invest in ME International ME Conference. This was only my second year at the Invest in ME conference, but already I feel right at home! The presentations you’re about to read about are only half the story; the opportunity to mingle and network with a family (yes it really does feel like
Continue“The Bar Has Been Raised” – CFSAC Spring 2013, Day One
Mark Berry looks back on the first day of a controversial CFS Advisory Committee Meeting The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice a year, and the Spring 2013
ContinueInternational Awareness Day, May 12th 2013: Worldwide Protests and Events
Mark takes a look at what’s going on around the world this weekend to mark International Awareness Day May 12th is International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Awareness Day events also recognize Fibromyalgia (FM), Multiple Chemical Sensitivities (MCS), Gulf War Syndrome (GWS), Lyme Disease, and other chronic neuro-endocrine-immune diseases (NEIDs). Awareness Week runs from May 12th-18th, and
ContinueCFSAC Spring 2013 (May 22-23): How to Participate
Jennie Spotila looks forward to the next meeting of the CFS Advisory Committee – and explains how you can participate. The spring meeting of the CFS Advisory Committee is May 22-23, and we only have a few weeks to prepare. The agenda is not available yet, but we do know about a few new things happening at the meeting. New
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