In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes of the P2P and IOM. In yesterday’s piece, Clark Ellis critiqued and praised elements in
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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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Jody Smith may have dodged a holiday bullet this year. She’s hoping. Only time will tell. How did you fare? How have you survived the holiday season? I’ve been thinking of you in the Phoenix Rising community all week. I wanted to write something before Christmas but … I thought I was in for a crash, as old symptoms started
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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it … The new video from ME Analysis highlights the shocking lack of funding for biomedical research into ME: less than £2 million in over 25 years. (If you don’t
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Anyone else been poisoned along the way? Jody Smith tells part of her horror story … Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I’d just been dealing with some heavy-duty menopausal issues. The sleep abnormalities, the brain fog, digestive issues, astonishing weight gain, I
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Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients … Thirty years of neglect, incompetence and malfeasance by the Department of Human services (HHS) have rendered ME patients
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Persuasion Smith covers the bases on the misleading and disreputable name for our disease we’ve all been saddled with … If there is one thing that is sure to get ME/CFS sufferers riled up, it is the name of our disease. The very fact that two names are attached to each other, janus-like, almost as if mocking one another seems emblematic
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Simon McGrath reports on Dr. Lipkin’s talk to patients in London … In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution … We need more and more ME/CFS patients to integrate into the ePatient (“engaged/empowered patient”) Revolution. Get informed, tell your story, unite with other patients online, and change health care for the better. Six weeks ago, I attended the
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Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way … Ergonomics can help people to navigate in a healthy way through their world, so they are not slouching, bent funny or stuck in the same position for too long, and so they can avoid the
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Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia. Dr. Jonathan Kerr is regarded as one of Britain’s foremost myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) researchers, and an expert in microbiology, inflammation and genetics.Formerly of St. George’s University of London, he is now working at the Escuela de Medicina y Ciencias de la Salud,
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Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors. On behalf of the Phoenix Rising Board of Directors, I’m delighted to announce the appointment of two new board members. Regrettably, I also have to say goodbye to one. Karen Luoto has stepped down as President.
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