Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Just spent some time this am with Dr Montoya. He now claims he can prove that inflammation is a major component of CFS. He hopes to have his results published before the Stanford symposium. The most interesting piece of new information was about the super cytokine Leptin. One of the professors...
There is now one more understanding doctor towards ME/CFS people out there. Here's some successful advocacy I just had. I urge all to put extreme anger aside to how we've been treated and try to reach out in comments to articles (they do not have to be ME/CFS articles.. people often have no...
http://www.buzzfeed.com/d... excerpt: At a conference last week in San Francisco devoted to myalgic encephalomyelitis — the devastating illness more commonly and misleadingly called chronic fatigue syndrome — it was immediately clear that researchers from leading medical centers in the U.S. and...
This was presented yesterday. No idea when an English summary will appear and/or weather they will publish these findings or rather, they'll wait until the final study is done, within a year. Anyway, I am sure an English summary will appear soon . As for now here's the original article written in...
View the Post on the Blog Simon McGrath takes a brief look at a recent paper that reveals some of the most powerful evidence of cognitive problems in people with ME/CFS to date... http://phoenixrising.me/w... It might not come as a huge surprise to patients, but a new study has found that mental...
View the Post on the Blog Simon McGrath recently secured an interview with the world famous Dr Ian Lipkin – a scientist who continues to believe that ME/CFS has a physical cause – to discover more about his plans for a major study of the gut microbiome and to find out why he's asking the patient...
Date: March 12, 2014 Source: Cell Press Large study identifies exact gut bacteria involved in Crohn's disease Summary: While the causes of Crohn's disease are not well understood, recent research indicates an important role for an abnormal immune response to the microbes that live in the gut. In...
I would like to extend an enormous, warm thank you to Phoenix Rising for hosting a second article by another excellent writer on this crowdfunding campaign and for promoting us by giving it so much exposure. I am forever indebted to the Phoenix Rising Content team for devoting their time and...
I would like to extend an enormous, warm thank you to Phoenix Rising for hosting a second article by another excellent writer on this crowdfunding campaign and for promoting us by giving it so much exposure. I am forever indebted to the Phoenix Rising Content team for devoting their time and...
https://www.facebook.com/... March 16, 2014 at 11:17pm "We have been sent this Press Release from Rebecca Hansen - Chairman of the ME Association, Denmark." Fight over Diagnosis Leads to Hearing Who decides if the cause of an illness is physical or psychological? Should psychiatrists have...
I was honored and pleased to have been asked to sign what has become known as the 'Experts' Letter,' where several dozen colleagues have expressed opposition to possibly altering or redefining the criteria of M.E. & C.F.S. by virtue of the pending IOM contract. If it was the case that there was...
Hello everyone, long time no see! For those who've been here for years and not seen me in a while, I'm doing a lot better these days. I got out of a bad relationship a year and a half ago, when I was really ill, and also started getting treatment for mast cell problems. I'm doing better with...
http://www.whchronicle.co... The Strange Case of NIH and an Elusive Disease By Llewellyn King The federal government has a mostly open dialogue with those it serves and those who serve it. This happens pretty well across government agencies, from the Pentagon to the Department of...
Hi everybody, I'm going to briefly explain how my consultation on last thursday with Dr. De Meirleir went, in case it might be worthwhile to some of you. After 11 months on ABX for Lyme, he told me to stop them and put me on antibiotic herbs (samento, cumanda and banderol), on last december....
Thank you Gabby and Marco. You are both correct. I am indeed an orthodox Jew, and Irish Jew, a British Jew (being born in Belfast allows me Irish and British heritage). I am fiercely Irish but attended a protestant high school in Belfast, and a Hebrew school daily in the late afternoon so I can...
I think it's time for the community to put pressure on Director Collins and the NIH for not only under funding us but also for not approving the Lipkin Microbiome Study. Dr. Lipkin had this to say about his study, " However, identifying patients who have microbiome-related immune disturbances...
Published online: 26 February 2014 ‘Recovered’ – do you only feel better? “I feel so much better today, I’ll go back to work”. Ah, those halcyon days before you had ME. You were ill, you rested, you got better. Put simply, you had recovered. So when a trial of treatments for people with ME/CFS...
Thank you for the invitation to speak on behalf of Phoenix Rising. We are a non-profit patient-led organization which hosts the largest online forum for ME/CFS patients. We have enlisted our members to comment on the question posed by the IoM in their study to recommend clinical diagnostic...
Placebo effects are not the “power of positive thinking” Posted by David Gorski on January 13, 2014 http://www.sciencebasedme... This is a surprisingly intersting article presented on SBM, along with the comments that suggest that much of the "placebo effect" is due to biases in reporting outcomes...
Quick report-in: I have been taking RS and probiotics (the probiotics for years, added RS about 6 weeks ago) and am noticing a significant decline in OI and PEM. Almost scared to mention it at this point, but don't want to keep it to myself as others might benefit. I am taking 1 teaspoon daily....
View the Post on the Blog In the first in a new series of 'In Brief' articles, Andrew Gladman provides a helpful insight into the science behind fairly common topics and explores how they relate to ME/CFS. This time he looks at the muscles, exploring how our reported symptoms might be associated...
This looks quite interesting, though I have no idea how sound the people behind it are: Launch of the Council for Evidence-Based Psychiatry James Davies, Ph.D. March 22, 2014 When I started working in the NHS in Britain I pretty much accepted the mainstream view – that psychiatric drugs work,...
A small team of volunteers did an extraordinary job at extremely short notice, and put together our presentation for Gabby to deliver, based on the summary of members' comments that I produced in this thread. Here are the materials they put together for this presentation: Presentation powerpoint...
The changing face of psychology | Science | theguardian.com Really interesting piece about problems in psychology and life science generally, and how things are beginning to change. It starts of by talking about how in 1959 researcher Ted Sterling found that an implausible 97% of papers in 4...
Prof. Edwards, Apparently the Nijmegen ME/CFS centre is starting a RCT to study Anakinra in 46 female ME/CFS patients. Anyway, considering they picked a rather specific drug - a so called IL-1 receptor antagonist- do you envison a theoretical model for this drug to be effective in ME/CFS?...
Funders punish open-access dodgers : Nature News & Comment For years, two of the world’s largest research funders — the US National Institutes of Health (NIH) and the Wellcome Trust in the United Kingdom — have issued a steady stream of incentives to coax academics to abide by their open-access...
Before anyone else misinterprets or misunderstands what this MEA information on blood testing is for: It was produced as a very basic MEA magazine item to cover ALL the routine blood tests that EVERYONE should normally have here in the UK before a diagnosis of ME/CFS is considered or made....
I got a subscription email from ProHealth including the following -- Creating a Mindset of Healing By Lauren Schnell* What if I told you that doctors have discovered a breakthrough in treating Fibromyalgia and ME/chronic fatigue syndrome you or a loved one is living with? Would you be open and...
NPR has just released a piece on the controversy over HHS-IOM plans to create a new definition for "ME/CFS." This is not a perfect piece, but I am still glad to see this story finally getting mainstream media coverage. -Lisa http://www.npr.org/blogs/...
Someone asked in one of the articles why Stanford is researching ME/CFS. I would like to shed some light on that with the information that I know. Dr. Montoya runs 3 patient clinics as well as researches them and is published in all 3. His long standing clinics are Toxoplasmosis and one for...
