Ice Bucket Challenge funds breakthrough
August 21, 2015
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The ALS Ice Bucket Challenge raised more than $100 million, which resulted in a research breakthrough.
Category: All News
Australian research into ME/CFS in adolescents
August 19, 2015
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Research into neurological biomarkers in paediatric ME/CFS begins in Australia
Couple battles ME and HIV
August 19, 2015
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The moving story of Franky, an ME patient and Randy, his HIV positive caretaker and partner. Every once in a while there along comes a story that leaves even me teary-eyed. Waking up this afternoon after my siesta, I opened my email to discover this true gem from the Huffington Post Blog of Dr Franky Dolan. I
Lipkin and Hornig nail #ChilliMEchallenge as donations top $0.75 million
August 19, 2015
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Three Quarters of a Million Dollars for ME/CFS Research at Columbia University! [pullquote align=”full” cite=”” link=”” color=”#E7453A” class=”” size=””]”ME/CFS is a global problem that we need to address – it robs people of the most productive years of their lives, it causes immunological dysfunction, profound fatigue, cognitive dysfunction. It really destroys peoples’ lives. It is
Study overturns old ideas on mitochondria
August 11, 2015
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“Scientists are reporting the first clear evidence that muscle cells distribute energy primarily by the rapid conduction of electrical charges through a vast, interconnected network of mitochondria — the cell’s “powerhouse” — in a way that resembles the wire grid that distributes power throughout a city.”
Ampligen price more than doubles, available soon in Europe
August 10, 2015
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Ampligen price more than doubling in the US? As many patients who are receiving Ampligen in the US already know, the price of Ampligen is set to dramatically increase. Two patients I spoke with today said the price would more than double from $75 a vial to $200 per bottle. At their current dosages, that would raise the
Should we oppose the Senate proposal to cut CDC funding to zero?
August 9, 2015
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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
Four ways to Observe Severe ME Awareness Day
August 8, 2015
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Saturday, August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe myalgic encephalomyelitis as well as a day of remembrance. August 8th was the birthday of Sophia Mirza, a 32 year-old woman who died of ME. Here are three ways you can observe the day: 1) Join the Twitter
OMF Severely Ill Patient Study Gets $500,000 donation
August 7, 2015
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[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]Very little research has been done in the bedbound patients “Hopefully, the more severely ill will have a stronger signal of what’s going wrong.”[/pullquote] The Open Medicine Foundation’s Severely Ill Patient Big Data study has gotten a HUGE boost with the help of an anonymous donor. This $500,000 donation will
Portraits of invisible illness
August 6, 2015
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Juliet Chenery-Robson is a freelance photo-journalist and editor in the UK. She had to put aside her career and become a full time caretaker when her daughter developed ME at age 13. Robson has spent the past 10 years raising awareness for ME. She describes an all too familiar experience with doctors: [pullquote align=”full” cite=”” link=”” color=”#E7453A” class=””