by Sasha The charity Invest in ME’s plans for a UK Rituximab trial got a substantial boost at the end of July when Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), agreed to act as their advisor for the study. ‘No UK expert is better placed than Professor Edwards to advise us on setting up
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by Sasha On June 6, the Norwegian Medical Research Council agreed to give a large enough grant to the Haukeland Rituximab trial for the study to begin. Later that day, the charity Invest in ME announced that they were initiating a UK Rituximab trial. It seemed to come out of nowhere. There were no details – cost, size, location, research
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by Sasha On 9 March, ME/CFS patient Dr Maria Gjerpe started a 90-day campaign to raise $1.2 million (£780,000, €920,000) to fund a confirmatory trial of the effects of immune drug Rituximab on the disease at Haukeland Hospital in Norway. Ninety days because that’s all she could confidently commit: she herself had gone from bedridden to completely well on Rituximab
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by Sasha I call Dr Maria Gjerpe’s 90-day campaign to raise money for a crucial confirmatory Rituximab trial a ‘fundraising marathon’ but that hardly covers it. It’s more like a triathlon a day for three months. Maria, previously bedridden for years with ME/CFS, has been working 12-hour days non-stop to fund the Phase III trial on the drug that has,
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Dr. Maria Gjerpe, an ME patient for 30 years, explains how and why MEandYou are going to crowdfund a Rituximab study. Within 90 days we are going to raise 7 million Norwegian krone ($1.2 million) to fund a study on 140 ME/CFS patients at Haukeland Hospital in Bergen, Norway. Will we – the patients, relatives, friends – be the first
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Jody Smith continues her review of Nova’s Patient Conference for Dr Klimas with a look at three patients who have improved significantly. “No one has ever taught me more about what to do than my patients.” So said Dr. Nancy Klimas at the Patient Conference hosted by Nova Southeastern University on January 26, 2013. This has to be one of
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by Sasha Late on Friday, 8 February, Bob Miller announced the end of his hunger strike to get Ampligen approved for people with ME/CFS. Our community had never seen anything like this and I hope we never have to again. It hasn’t been easy watching Bob get weaker and weaker on his video diary and I’m sure there’s a collective
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by Sasha The FDA may have disapproved Ampligen but Bob Miller isn’t giving up his hunger strike. Visibly weaker in a video clip on his Facebook page, on Day 9 of his hunger strike, Bob moved on to the next, logical target: he wants Secretary of Health Kathleen Sebelius to have the National Institutes of Health conduct a clinical trial
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by Sasha Bob Miller has started a hunger strike to push for FDA approval of Ampligen. He and his wife, Courtney Alexander, who are well-known for drawing President Obama’s attention to the plight of people with ME/CFS, urge us not to do the same. Instead, they’d like us to send the email below, alerting key decision-makers to his strike, to
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by Sasha “There comes a point in human suffering when acceptable risk is most appropriately determined for oneself, not by government.” So said Suzy, in an online comment about the failure of the FDA Advisory Committee on Ampligen to vote in a manner that would have got approval for the drug’s use for patients with ME/CFS. But it’s not too
ContinueTry to leave your calendar open from 8am-5pm EST on the 20th for the FDA’s hearing in Ampligen! Information about the meeting is available at December 20, 2012 Meeting of the Arthritis Drugs Advisory Committee (not mistitled!). The webcast will take place at https://collaboration.fda.gov/aac122012/ and Phoenix Rising will attempt to embed the video locally to make it easier to simultaneously
Continueby Cort Johnson The benzodiazepines may be the most commonly used class of drugs in chronic fatigue syndrome and it’s easy to see why. Their ability to enhance the effects of the ‘feel good’ neurotransmitter, GABA, makes them a nice foil for study findings indicating that the fight or flight response is turned on in ME/CFS. Look down the list
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