Ron says this is the best research ever done on ME/CFS and will transform research, diagnosis and treatment. It is consistent with what Ron has been finding with Metabalon data, but Naviaux has analyzed a large number of patients and put it all together into a coherent theory with predictive...
http://www.qmul.ac.uk/med... Celebrate! We should be on our knees thanking Alem Matthees, the patient who made the Freedom of Information request and stuck through two years of appeals and nonsense from the PACE authors and Queen Mary University of London, who have covered themselves in shame...
Hi Guys, As promised, and huge thanks goes to @Rose49 and Linda Tannenbaum at OMF for orchestrating this. I am just the messenger here! As you have no doubt seen the metabolomic study with Dr Naviaux, here is Professor Ron Davis, Director of OMF scientific advisory board (and all round hero)...
He needs money to continue doing studies. I'll leave your other comment--he's dug into his worldview, and within that worldview, he is trying hard to save his son's life. But he won't listen to any suggestions that might help, if they don't fit his framework. That is a completely inaccurate...
I'd say that just because this state doesn't look like acute infection doesn't preclude it being a chronic one. His interpretation of this seems to differ from Naviaux's: I just spoke with Bob Naviaux and Ron. They do not disagree one bit. I read that paragraph to Bob and he said, "Ron is SPOT...
The Naviaux study we have been waiting for Metabolic features of chronic fatigue syndrome Chronic fatigue syndrome is a multisystem disease that causes long-term pain and disability. It is difficult to diagnose because of its protean symptoms and the lack of a diagnostic laboratory test. We...
The judgment is out and it's great news. The Tribunal has rejected QMUL's appeal and so the PACE data should be released (subject to any further appeal by QMUL). https://valerieeliotsmith... Huge win for patients, huge win for Alem Matthees!
(I'm Janet Dafoe, Ron Davis' wife) When I read the different interesting responses to the NIH request I told Ron he should write one. He told me he had already done so a couple of weeks ago. When I read it, it blew me away! I sent it to Linda Tannenbaum to post and I wanted to post it here. So...
OMF(Open Medicine Foundation) OFFICIAL THREAD inc Q And A! Hi all, I have recently been in contact with the wonderful OMF, and we have decided to run an official thread, so that we can streamline information directly to you guys here as there is so much interest in the organization and...
I'm hoping we might hear Ron Davis thoughts on the data, I like how he explains things. @Rose49 great to hear Ron is going to be doing a statement. Has anyone had a chance to read all the coverage, which mainstream article has been the best objective coverage so far? Ron finished his statement...
Wow, that's so fascinating, and so kind of Dr Davis and Dr Naviaux to take the time to reply in such clear detail. Please thank them for us. I've been telling them both how much you all appreciate this. I think it's really important and I'm so happy to be the messenger! You guys deserve as much...
I would like to express my appreciation of how the researchers, and @Rose49 have responded to our interest and questions, and kept us in the loop. In medical science this is invaluable to patients, though I do expect to see this only after publication, as there are still lots of hoops the system...
I think the best bit may be the bottom of page 36 and top of 37 where they state ... "Professor Chalder's evidence when she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made to researchers or participants. The highest she could...
@Rever It is unfortunately a very expensive biomarker. Not sure how useful it will be unless the price of Metabolomics can be brought down. Ron, Laurel Crosby and colleagues are working on that! Stay tuned!
Assuming QMUL doesn't appeal (or its appeal fails) the data then released should allow analysis to see how many people recovered according the the original protocol (ie before the authors moved the goalposts). It's highly unlikely to be anywhere near the 22% claimed by PACE (a figure approvingly...
I caught that @mfairma and have requested the article be edited to better reflect the content of the talk. Hopefully that won't take too long :) Thank you everyone for your kind words and support. I am pretty destroyed right now. I almost never get cognitive PEM but in the process of memorizing...
@Valentijn , you left out the first lines of my post To leap now without preparing would waste his time. As to the rest, @Gingergrrl suggested I read this entire thread (which expands voluminously daily) and consider myself lucky and act now. I don't have time to read this whole thread. Nor...
Dr. Naviaux told me today that he is pretty overwhelmed with all the questions, and he's spent a lot of time on the ones he has answered. He'd love to respond to them all, but it's taking time away from his research and he needs to focus on that for awhile. I'm sure you'll be glad he's so...
Patients should never have had to go to court to get this data. It's our health, we have the right to scrutinise claims about what works. Sadly researchers interests are not always aligned with ours, and when it comes to clinical research, patients' interests should take priority. Why else do...
One of the biggest newspapers in Denmark, Politiken, has an article today covering the ME-debate in Denmark. The title is: "Foreign professors: you are treating chronic fatigued Danes wrong" They have interviewed professor Ola Saugstad (Norway) - "If Denmark still thinks ME is a functional...
Let's not forget to thank Alem Mathees for shaking the PACE tree. We are now seeing why they were so opposed to FoI requests. I doubt this would have been published if it were not for the hard work and eventual success of Alem and those who supported him. I'm looking forward to seeing what else...
This is my first pass review, though I would love to see further discussion and checking by someone with a stronger stats background than I have, particularly with regard to checking for false positives: Metabolic features of chronic fatigue syndrome Naviaux et. al. , published in PNAS Plus....
Wow, just wow. They've actually given these people a thorough pasting. If that isn't a big crack in the dam I don't know what is. Wow. Seems the tribunal have really done their homework, and they didn't like what they found one bit. They seem to have concluded all the things people round here...
Thats a huge statement. Thanks Janet. I hope he can help Whitney so bad. I hope that Whitney recovers. I want to see miracles and hopefully Whitney and others will be those miracles. Thank you @Justin30 . I am pretty overwhelmed by lots of the stuff on this thread. We know Eric Gordon to be...
In January, I posted a list of the questions I still wanted to ask the PACE authors, who have repeatedly refused my requests to interview them about their ethically and methodologically challenged study. Richard Horton, editor of The Lancet, has similarly declined to talk with me, ignoring my...
I appreciate Prof Davis´s efforts on behalf of the ME community (before anyone accuses me of being ungrateful), but I have to disagree with his comments here: ´Another important finding from this study is that the metabolomic response observed in ME/CFS is opposite to the pattern seen in acute...
First update from Dr Naviaux and Prof. Ron Davis! "Naviaux and Davis responses to Qs about Viruses and CFS" Will update initial post. Big thanks to @Rose49, and ofcourse Prof. Ron Davis and Dr Naviaux. Prof. Ron Davis response: Viruses and CFS, Statement by Ron Davis, 9-7-16 There is a...
At @Graham — did you have any right of reply to this 'argument' re motive from QMUL? Yes, I did reply, but the Information Office decided against me. I decided not to take it further as, in comparison with the request for key data currently waiting a ruling from the Tribunal, this was small...
https://microbiomejournal... (Open access) Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome Ludovic Giloteaux, Julia K. Goodrich, William A. Walters, Susan M. Levine, Ruth E. Ley and Maureen R....
The judgment is out and it's great news. The Tribunal has rejected QMUL's appeal and so the PACE data should be released (subject to any further appeal by QMUL). https://valerieeliotsmith...
Dr. Naviaux told me today that he is pretty overwhelmed with all the questions, and he's spent a lot of time on the ones he has answered. He'd love to respond to them all, but it's taking time away from his research and he needs to focus on that for awhile He should absolutely focus on the...
1. Tribunal ruling that PACE must release the data. 2. AHRQ downgrading its recommendations for CBT & GET 3. Naviaux et. al.: Metabolic features of chronic fatigue syndrome A hat trick, a strike-out, and a trifecta, all rolled into one. :thumbsup: Here is me in dauer: :ninja: Here is me in...
Hi @Jill, your story is fascinating. It would be great to have some research done on how such a thing could happen, especially as Rose49 has described a similar phenomenon with Whitney. I wonder though whether it's fair to ask for individual medical advice from Ron who is a scientific...
does the metabolomic testing require extra-fresh blood samples ? for people not in the US/UK, would international shipping delays make the testing unreliable ? The blood has to be sent in dry ice. Heavy and expensive overseas. But amazing Laurel has figured out an alternative and is testing it...
Vincent speaks with David Tuller about flaws in the U.K’s $8 million PACE trial for chronic fatigue syndrome, and efforts to have the trial data released. http://www.microbe.tv/twi... Thank you so much to Vincent Racaniello and David Tuller for their constant support!
User9876 posted this in another thread. 772035205695672320 Pretty amazing to have Tatchell comment on this. Not sure how widely recognised he is internationally, but in the UK he's very well known as a campaigner first for gay rights (back when this was an unpopular cause), and more recently...
Having interviewed Ron Davis for an article on Phoenix Rising, I can say without a shadow of a doubt that Ron is by far the most brilliant scientist I have spoken with. He is probably the smartest and most knowledgeable person I've ever spoken with in any area of life actually. And he was very...
Just published today - nice going, @Keith Geraghty! :thumbsup: Health professionals should be made aware that ME/CFS is not a psychological illness and in order to improve patient care, nurses need to better understand this illness and its impact on patients. Nurses often witness close-up...
Can many doctors actually make use of this test clinically? Can it currently be used for anything other than curiosity and checking results against Dr Naviaux's research? I'm going to ask Ron and Dr. Naviaux to answer this. I know that in the absence of NIH funding, it is hard to get all the...
And should you want to curl up with the C. Elegans nematode known for its ability to enter the dauer state, there's a plush toy for that.o_O Seriously. At giantmicrobes.com. http://www.giantmicrobes.... http://www.giantmicrobes....
Woohoooo! Now on to the analysis! OMF is excited to announce that sample collection has been COMPLETED for the ME/CFS Severely Ill Big Data Study. The completion of sample collection means we now have the most multi-faceted and down-reaching data ever gathered to analyze and test in our search...
@Rose49 I can't begin to express my gratitude to Dr. Ron Davis for all the work he does and to you for keeping us updated despite both of you taking care of your son. Seeing such high profile researchers like your husband and Dr. Naviaux taking their time to elaborate for us lay people really...
It was a majority decision, which seems to suggest that one of the three tribunal members was against us and it could have been a close thing! On page 2, I was pleased to see us referred to as “people suffering from “chronic fatigue syndrome””, rather than “patients”, which as I’ve said before...
@Rose49, thank you so much for taking the time to post here, with all the struggles you have in your own life. Also, please convey to Dr. Davis and Dr. Naviaux my deepest gratitude for their stellar efforts on behalf of ME patients. I haven't been this excited about research in many years....
Tribunal was right to order release of chronic fatigue trial data - The Conversation (by Professor Jo Edwards) After nearly four months deliberation a tribunal has dismissed an appeal.PDF) made by Queen Mary University of London (QMUL) against a requirement to release data from the PACE trial –...
