http://content.delivra.co... PINEAPPLE FUND INCREASES DONATION TO $5 MILLION Two weeks ago, on January 14, 2018, OMF received a $1 million donation from the Pineapple Fund to “accelerate much-needed research for ME/CFS and related chronic complex diseases." The Pineapple Fund was so moved by...
26499 UPDATE Some of Bob's many friends have put together this tribute to him. We do not think it is appropriate to discuss the circumstances of his death or the treatment that he received until the inquest is over, and will get back to you with more details then. In the meantime, we have...
Hi, I’m Robs sister, it’s lovely reading all your comments, I knew he did some ‘stuff’ on forums but never knew the extent of it. Myself or Graham will let you know when rob’s Funeral is, we’re not sure on a date yet.
Hi, no problem, Graham has asked for a photo and that’s my job for this evening when the kids have gone to bed to look for one. I am his little sister-6yrs younger, we have another brother and another sister, he chose my name for me when I was born. We fought like all siblings do but we were...
A very exciting meeting took place this weekend at the Bateman Horne Center in Salt Lake City. This meeting was a collaborative effort to bring together 11 expert ME/CFS clinicians to discuss diagnosis and treatment of this very prolific and debilitative disease. Their goals were as follows:...
Unrest is still making a big difference. In fact, in some ways it's making a bigger difference than ever.. Last month it was shown to public health officials and an all star ME/CFS panel in Berkeley. Now 200 researchers and public health care officials have signed up to see it in Massachusetts....
Hi guys, It’s #OMFScienceWednesday! Last week, Dr. Ron Davis, our Scientific Advisory Board Director and Director of the Stanford Genome Technology Center, was invited to the University of Texas at Dallas, to speak in their Green Systems Biology Distinguished Lecture Series. He used the...
Hi guys, On this #OMFScienceWednesday, we present a new project that we are funding that will evaluate the ‘deformability’ of red blood cells as a potential biomarker for ME/CFS. Red blood cells (RBCs) are the most common cells in the blood. Their main role is to transport oxygen and carbon...
https://scontent.flhr1-2.... Tom has posted this photo of Bob. It is good to see to whom I was talking on the phone at last. What a terrible loss Bob is to us and how tragic his passing is for his family. He is one of our heroes. Thank you for all you did for this community, Bob, and I am...
We are incredibly fortunate to have been been the recipients of such enormous generosity. You can see the ME Action logo at the bottom of their webpage. The donation was made earlier today. https://pineapplefund.org...
Hi guys, On this #OMFScienceWednesday, we have a promising update on the metabolomics validation study we are funding in Dr. Bob Naviaux’s lab at the University of California, San Diego. This study is designed to independently validate Dr. Naviaux’s groundbreaking findings of metabolic...
So many people in that film are sitting with their legs elevated. Also, Whenever you see Jen Brea on TV she has her legs crossed under her. I write this with my feet on the coffee table. It's disproportionate. We're not just interested in sitting down. We seem to need to get at least part...
Hi guys, It’s #OMFScienceWednesday! Today we share a video lecture by OMF Scientific Advisory Board member Dr. Olav Mella of the University of Bergen, Norway. In this lecture, Dr. Mella talks about the evidence for autoimmunity and metabolic disturbances in ME/CFS, and what such findings may...
So, trying to advocate for myself, I called a doctor to talk about being my GP and creating a possible treatment plan for the ME. I no sooner mentioned ME than I got yapped at, that "That darned movie is fiction, and has caused more trouble by making bored people think they're ill". After I...
One of my personal advocacy projects for the past 16 months has been to try to have Healthwise remove the GET and CBT modules from their ME/CFS content. Healthwise provides medical content for many major healthcare corporations in the United States, including Kaiser Permanente with its 13...
how do you find @Ben H on twitter (I don't have a twitter account) or @Ben H, could you post a link here to see you playing? :) @Ben H, that is great! I know it crashed you, but how satisfying to make music. Congratulations! 979728740837097472
Just thought I'd let folks know I started IVIG this week. Two grams per kilogram induction dose followed every three weeks by 1g per kg. This is the emerging dosing schedule used for small-fiber neuropathy. If you download the latest "IG Living" magazine (yes, it's a thing!), there's a short...
The main document about this is being translated into English at the moment, but in the meantime we must make do with this. This whips the mat from under Dr Crawley's feet as she is always quoting the Dutch papers to support her approach. https://www.medischcontac... What was the twist about...
Is there someone out there who can describe a metabolic trap? Without the details of the biochemistry any explanation will be vague. I started thinking about metabolic traps 25 years ago. I presented a paper to an ME/CFS conference in '99 on one type of trap, which was later shown to be wrong....
From the article: I wonder if this is directed at practitioners, patients, or both. On one hand, it's really tempting as a patient to want to know more about the detail. On the other hand, it does get a bit worrisome to see people experimenting on themselves. I want someone to find something...
