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
ContinueAVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals. The Semi-Finals are now underway and require casting a daily vote through Dec 10th. Voting ends at 4pm
ContinueA Little Poisoning Along the Road to ME/CFS
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
ContinueJoin the National PR Campaign for ME: Power to the Patient (P2tP)
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
ContinueA disease with two faces? Re-naming ME/CFS
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
ContinueHunting down the cause of ME/CFS & other challenging disorders – Lipkin in London
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.
ContinueThe ePatient Revolution
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
ContinueErgonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
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
ContinueDr. Kerr, I presume?
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,
ContinuePhoenix Rising Adds Two New Board Members
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.
ContinueThe Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest … Right after I wrote this article, the draft review was made public HERE. We have started a thread HERE on Phoenix Rising in order to discuss this review. The review in its final form will be the evidence
ContinueCan You Come for a Visit? My ME/CFS Says No
New grandma Jody Smith shares her frustrations about not being able to visit the new baby… My daughter and son-in-law just had a baby last week. We are thrilled. But we won’t be able to see the baby or hold her any time soon. We won’t be able to take over little gifts or help out with housework or babysitting.
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