To All My Fellow Canaries, One of the best ways for multiple voices to amplify a message is by taking the message out into public view using our “outside” voices. It sure feels to me like the ME patient community is long overdue in staging a public demonstration to shine a spotlight on the U.S....
From the Action for ME 2013 Research Conference & AGM Stephen Holgate was the keynote speaker and, as usual, was immensely interesting: he gave a brief overview of where we have been in the field of M.E./CFS research up to now, and how little contribution it has made to patient benefit. There is...
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...
We live two hours away, so we drove down here from the Netherlands. We made reservations in Grimbergen, which is a town just north of Brussels. The clinic is at the north end of Brussels, so we only have a 7 minute drive to get from the hotel to the clinic. The hotel is adjacent to an elaborate...
News from Open Medicine Institute: https://www.facebook.com/... Open Medicine Foundation & Institute is thrilled to announce receipt of $612,000 towards a series of investigative research projects which will take us one step further in our quest to find a cure for neuro-immune illnesses....
Ultimately, cars will be used both by people with and without any knowledge of how engines work, so the participation of both types of people is very important in the engine design process. :alien:
The FDA is concerned people will make radical decisions without complete information. For example having an unnecessary mastectomy because 23andme says your risk of breast cancer is high, or forgoing important checks like a mammogram if they say your risk is low. Who would be so stupid to have a...
I found this on the internet a while back. I think it was originally on the cover of the 25% ME Group magazine http://www.25megroup.org . It came to mind following the BMJ e-letter from Sean Lynch (psychiatrist) in reply to two of my e-letters (see: http://www.bmj.com/conten... ). I'd like to...
My guess is that many of us here struggle to shop and cook. In some countries there is help available for these basics but in others, there is not. I fear that many on this forum are undernourished just because they are not able to adequately take care of themselves and/or don't have the money for...
This article seems to be a very strange piece of doubletalk. It wants to give the impression that the claim of 'Too Much Medicine' in the UK is supported by what happens in the US. This is completely barmy. There is virtually no unnecessary investigation in the UK. Looking back on my medical...
Please send THANK YOU cards to this wonderful ME/CFS researcher! Frank Ruscetti, PhD, will retire soon from his long, distinguished career at National Institute of Health's National Cancer Institute, having embarked on his career in 1975. Widely regarded as the Father of Human Retrovirology, he...
leokitten. I am curious. How long has it been since you started to believe you had this, and how long did it take to read the thousands of pages of material on the subject? If you are newly diagnosed and making progress, great! Do not ever forget, however, that this can turn sideways and go...
Hi everyone, Ok I've read the rest of the thread replies... Everyone look, this has made me quite sad :-(, I'm a really nice person and all of this has been so completely exaggerated and I don't know how it got to this, I apologize deeply if it were my fault how am I supposed to know being so...
Many of these talks were synergystic, and too fast for me to take notes and look at slides, so some things are merging in my mind as to who said what.. If slides are posted they will have a lot more detail. Would like to hear it all again. I was also effected by the wall to wall carpet. I...
Received from Mary Dimmock via Co-Cure: Below is an excellent letter sent by Dr. Lily Chu to Secretary Sebelius in support of the letter from 35 leading researchers and clinicians calling for the adoption of the Canadian Consensus Criteria and urging HHS to abandon the IOM contract. Dr. Chu is a...
@leokitten That makes sense that you're a new patient, just discovering the sad state of affairs with this disease. I think that would be great, given your background, if you could chime in and make corrections where people are getting the facts wrong.
http://www.europeanreview... Chronic Fatigue Syndrome (CFS) is a distinctive syndrome characterized by specific symptoms cluster. CFS mostly affects women and often results in severe functional limitation. Its prevalence varies from 0.4 to 2.5% in the general population. In our prior studies on...
Does anyone know when the Norwegian ME study is going to be published? I want to forward it on to our chief rhematologist who uses Rituxan here in Auckland. I think he may have been involved in the arthritis work Prof Edwards. His name is Peter Gow at Middlemore hospital, Auckland. I also used to...
Report from News Medical: People with CFS to benefit from Griffith’s National Centre for Neuroimmunology and Emerging Diseases The new centre is dedicated to research on the interaction between the nervous system and the immune system and is led by one of Australia’s foremost authorities on CFS/ME...
What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study Objective To explore the impact of patient education on the lives of people with diabetes, including the effect on interactions with...
Dr. Enlander said: This is NOT a psychiatric disease!! It is a physical disease. Applause. Right then his phone rang loudly. I said "Simon Wessely calling." Thanks for those of you who politely chuckled! : )
I just wanted to start a thread where I can keep us all up to speed with the ongoing advocacy and research that is being performed by Professor Julia Newton and her team 'up' in Newcastle. You can of course follow developments - as I do - by 'liking' their Facebook page, here. 26 September...
leokitten I think everyone here is "hungry" for scientific facts and will really appreciate it if you can point out where misinformation may lead to mis-treatment--either self treatment or treatment from a health professional. Forums are by nature places of many opinions and experiences but...
Any idea why he was malnourished? I can see one of us dying suddenly of heart failure, but malnourishment (Is that a real word? o_O) shouldn't be a problem unless there was severe medical or social neglect. Did his GP miss a major absorption problem? Or perhaps this man was not physically able...
My doctor ran bloodtests, and found my kidneys on the brink of failing back in April already and other signs of malnutrition. I also lost 8 kg within a couple of weeks. He is concerned, but there is little he can do. I am dependent on the foodbank for lack of money. Other people just comment on how...
I'm at my wits end and hope to find a new pathway in life to deal with this illness. So many here are experienced soldiers and I just need something, anything to get a new perspective. I think it is a long conversation for each of us. Maybe we find something new in ourselves or a way to morph...
@Jonathan Edwards, question for you. In RA there must be patients for whom Rituximab is not working for them. How do you explain that, since logically Rituximab kills auto-antibodies? And have responders vs non-responders have been researched in term of what is similar and what is different?...
It was a little funny. Dr. Enlander in his dark suit and french tie standing next to Eric at the podium in his shorts and bookbag. I think that Eric had a short sleeve polo shirt, instead of a tshirt i think he wore two years ago. I guess he's getting uptight being on the east coast so long. At...
View the Post on the Blog Tom Kindlon has been nominated in two categories for his herculean efforts with regard to health activism on the internet and in particular his work in disseminating the reality of the PACE Trial and GET/CBT as 'effective' treatments for ME/CFS. By Firestormm....
Can I ask a question? How do we know those IGG titers ARE significant? Have they compared our viral load with that of healthy people or some control group? I also test high on EBV and HHV6 IGG (including early antigen on the EBV). CFS specialist says these are significant, mainstream infectious...
http://www.americanbankin... Excerpt: PRESS RELEASE: NEW YORK, NY (11/20/2013) – An untold number of New Yorkers, perhaps well over 100,000, who have been diagnosed with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) could be at risk of relapsing and exacerbating their condition...
Mice with lifelong persistent coxsackievirus B (CVB) infection were injected with B cells from mice that are immune to CVB, and this resulted in either a transient or permanent disappearance of detectable CVB in the infected mice. Yes that's right: the injected B cells resulted in a permanent...
Maybe they're just trying to say he didn't deliberately starve himself to death. Not well put though Starving yourself to death is a helluva way to commit suicide. Strange they'd even suggest that was a possibility. It's only marginally less odd than making a big deal out of the fact that he...
What I find odd about this is how the story stops where it does - with the poor guy being found dead of natural causes. So what's next? Nothing? So someone with a chronic illness dies alone of heart failure and malnutrition and there's nothing else to do or say about it? No review of the system...
I am truly sorry that you have been so ill with this disease. Believe me, I as well as most members here can appreciate how this illness can destroy lives. I welcome you to the forum. I am sure that you are right in stating that there are information disseminated here. ( I am sure inadvertently)...
I just think we should keep the debate civil. Absolutely. We also need to keep in mind that civility needs to exist on ALL sides, and includes trying to avoid arrogance and paternalism. Treating other members like inferiors is not civil. That said, we all suffer from different degrees of...
Here is an Opinion piece which I thought brought together a lot of ideas that Prof Edwards might appreciate. Similarities and diffs between ME vrs MS http://www.biomedcentral.... Thanks Jill, Bob flagged this paper up in September and I ducked out of commenting. Some other relevant comments have...
(Not sure if this is the correct place to post this information, so please move this post if it should reside elsewhere.) Just rec'd an e-mail from Dr. Montoya's office that participants in his CFS study (I believe the one that Lipkin is involved with) are invited to a talk he will give in January...
I wrote a piece for this journal which is read by British GPs. https://twitter.com/ollie... I'm pleased they highlight the point about the fact GPs typically see patients at their best, as we're too sick to see them at our worst. I am also glad they have left in it mention of the UK ME...
