My nomination. To the PACE trial authors (P. D. White, K. Goldsmith, A. L. Johnson, T. Chalder and M. Sharpe; PACE Trial Management Group) who redefined 'recovery' to mean a possible deterioration in health and function (after treatment), and to indicate 'severe' and 'substantial' physical...
Normally I ignore rubbish studies but this one is so bad it deserves a special mention. Brief report: Writing about chronic fatigue increases somatic complaints Marko Jelicic ; Department of Clinical Psychological Science, Faculty of Psychology and Neuroscience, Maastricht University, The...
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...
Nobel winner declares boycott of top science journals Randy Schekman says his lab will no longer send papers to Nature, Cell and Science as they distort scientific process. Ian Sample, science correspondent. The Guardian. Monday 9 December 2013. http://www.theguardian.co... Leading academic...
I've had a little think about what I might say to the committee, so for what it's worth, and to get the ball rolling, here are my own personal thoughts about points we could include in our presentation... This is just a first rough draft, and I'm sure I've missed out a lot of important points, not...
"suggests that elaborative writing about illness, through its symptom-escalating power, has iatrogenic potential" So why don't these psychologists apply their above conclusion to psychotherapy as well, which after all, involves elaborative talking to a therapist about one's life problems and...
High Dose Selenium Significantly Improves My Fatigue and Brain Fog High dose selenium significantly improves my fatigue levels, and noticeably reduces my brain fog. I have consistently found selenium to be the best single supplement or drug I have tried for ME/CFS. I found that it requires a...
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...
As many of you know, when you eat vegetables like onions and Jerusalem artichokes and starchy tubers they compost in your colon and feed the beneficial bacteria that live there. And then there is Resistant Starch, which isn't a fiber and is harder to come by in the diet. It is totally undigestible...
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...
http://thoughtsaboutme.co... I’m m mad as hell and I’m not going to take this anymore!—Movie “Network” (1976) Today, I filed a lawsuit against HHS and NIH in the U.S. District Court for the Northern District of California for failure to comply with the requirements of the Freedom of Information...
I slept literally 22 hours a day for a few weeks after my first crash, and it seemed to help a lot. These days I notice that if I sleep 11 hours or more, I feel very slightly better. The usual 8 or 9 hours that used to be enough are woefully short now. That may be specific to me, but I've seen...
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...
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...
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...
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...
IOM refused my request to speak at the meeting via telephone. They said that I can submit it in writing. Here's my reply: Given how unlikely it is for every committee member to read every submission, you are not really accommodating severely handicapped people. And considering that the CFSAC has...
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...
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...
I rarely share but I do read keep an eye on the forums and news. I did not have an official diagnosis, but I was ill enough for about 10 years that I could not keep working as a teacher and was unable to go to the grocery store, etc. for many years. I do not tell people I am well, but most who know...
"Norwegian oil services company Island Offshore donates 400,000 kroner to the Norwegian ME Association to go to research at Haukeland University Hospital." -- Posted by Wildaisy http://translate.google.c... Island Offshore and NOK 400.000, - in Christmas gift to the Norwegian ME Association's...
The pattern of activity, crash, rest is acknowledged which is good. Unfortunately the message is still wrong, as it insinuates that patients have brought their illness upon themselves with unhealthy behaviour and beliefs. What the author calls pushing activity levels is attempting to resume...
Lipkin, in his last public statement to us on the phone meeting with the CDC, announced that he did apply for a grant from the NIH to continue his study and was declined. Hi! Everybody. I have been off line today, but I just wanted to pop in to say that all of the questions and information that...
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/...
http://www.buzzfeed.com/d... An estimated 1 million Americans are debilitated by the condition, which isn’t well understood by the medical community. Advocates and patients argue this is in part due to a continued stigma caused by its unserious-sounding name. Excerpt: So when the Institute of...
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....
The Role of Adaptive and Innate Immune Cells in Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis 30 Fukuda diagnosed CFS patients and 25 controls were studied. Their disease duration was kind of short at over 2 years, which might imply (based on Lipkin's unpublished findings) that they were a...
It's perverse to suggest that a patient group is ill because they have symptoms and are aware of the symptoms. In effect, their model of illness asserts that the illness is caused by its symptoms. Every other illness has symptoms that are caused by the illness, but CFS patients are a unique and...
I've noticed that there is no substance to any of the negative comments attached to Jennie. There just seems to be a generalised condemnation based purely on a past association with the CAA. Our opinions and our advocacy work evolve over time. Instead of speculating about individuals, and smearing...
