I'm delighted to announce that Janet Dafoe has joined Phoenix Rising's Board of Directors. I expect that almost everybody reading this already knows Janet as the wife of Professor Ron Davis; as the mother and caretaker of her son Whitney Dafoe who is severely ill with ME/CFS; as a deeply...
Oh my gosh! I just talked with Ron and he told me what happened in that BBC interview! I'm so shocked! He was warned that the BBC was on the side of PACE and were totally biased. The people in the interview were 1 scientist (Ron), 2 doctors, and one caregiver who has 3 kids with ME/CFS. The...
21508 21509 21507 Hi Everyone! Ron and Ashley arrived in London today and were able to walk around London a little before collapsing in their hotel. Linda arrived later tonight. I am posting little updates on twitter, but I thought I'd post my tweets here too, with photos they send me. Ashley...
I wanted to let everyone know that I was just approved for Rituximab by my insurance tonight! My doctor (who is a rock star in case he reads this board :star::star::star:) e-mailed to let me know that I was approved! I will be doing the initial two doses of Ritux at day Zero and day 14 per...
I've been thinking about this a lot. Perhaps what I'm going to say is obvious. But outsiders don't know. This is not just a bunch of people learning about some science at a conference, and scientists doing their usual research, and doctors learning about another disease. This is a group of...
Some amazing news guys... http://content.delivra.co... HANSON, FLUGE AND MELLA JOIN OMF SCIENTIFIC ADVISORY BOARD! Dr. Davis has invited three additional outstanding scientists to join the OMF Scientific Advisory Board and they have accepted! Dr. Maureen Hanson, Cornell University (New...
"Biological underpinnings of chronic fatigue syndrome begin to emerge Before his 33-year-old son became bedridden with chronic fatigue syndrome, biochemist Ronald Davis created technologies to analyse genes and proteins faster, better and more cheaply. Now he aims his inventions at a different...
We needed to use my actual name now so it's changed to @Janet Dafoe (Rose49). I'm hoping that Rose49 is still searchable for those who don't know about the change. I haven't had a chance to check yet. I'm excited to take on this new role and hope I can make a difference for everyone!
Haven't been on the forum so much lately - I've got 6 pages of "Recent Threads" I haven't looked at yet - can everyone please stop writing until I've had a chance to catch up? Anyway, had to come on and share this - I've just been having a Sunday morning chat with my sister in England, who is...
PACE trial commentaries in the Journal of Health Psychology to be made open access - thanks to the MEA! Following an exchange of correspondence with David Marks, editor of the Journal of Health Psychology, it has been agreed that ALL of the JHP commentaries on the PACE trial will be made Open...
I had a long talk with Ron at the end of his day. Great talk with the Swedish researchers at breakfast. He especially commented on how excellent, competent, insightful and useful Maureen Hanson's talk was. He met a cool Nowegian Doctor who is educating doctors in Norway and making sure patients...
Feeling pretty awful today, folks, but I thought I would share this interview with you; it came out today. https://mendelspod.com/po... _________________________... Ron Davis, Director, Stanford Genome Technology Center Bio and Contact Info Chapters: 0:00 “Wearing the cape” for ME/CFS...
PLEASE NOTE -- This post was originally on this thread --- Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME We have moved the posts that are related to Ron's BBC interview as they were off-topic to the thread related to IiME. Thank you. -------------------------......
Francis Collins and Walter Koroshetz have coauthored a blog post on the about ME/CFS. https://directorsblog.nih... They hit a lot of the right buttons. Now imagine that you never get better— plagued by unrelenting fatigue not relieved by sleep. Any exertion just makes you worse. You are...
After so many years of utter despair at the lack of progress being made in ME research, and moreover the lack of interest in trying to understand this disease (or group of diseases), it gives me so much hope to see these brilliant minds and wonderful people in London, sharing their ideas,...
http://www.meresearch.org... ME Research UK has taken the decision to withdraw its membership from the UK CFS/ME Research Collaborative with immediate effect. ME Research UK exists to fund biomedical research into ME/CFS, to find its cause, to develop effective treatments and ultimately to...
PACE trial commentary in JHP from Dr Charles Shepherd, ME Association The MEA commentary in Journal of Health Psychology on the PACE trial methodology and results has now been published Open access to full paper here http://www.meassociation.... PACE trial claims for recovery in myalgic...
Do graded activity therapies cause harm in chronic fatigue syndrome? Tom Kindlon Journal of Health Psychology DOI: 10.1177/1359105317697323 | First Published March 20, 2017 Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural...
I have had a good long chat with @Nephrofan. He is a very nice doctor. He pays his own money to attend this conference for his knowledge and training and had no idea that she was presenting and does not know EC. I see that his posts have now been approved for all to see. I think these posts...
I don't know. Wessely is about to be made President of the Royal Society of Medicine. Many key figures have presented this dispute as being a case of 'science' vs 'anti-science'. There are a lot of institutions whose own prestiege will be harmed by recognising the problems with PACE. We many...
If this is inappropriate or in the wrong place then i trust the mods will sort/move it. Having read somewhere on the boards today (I'm sorry I'm not sure who said it or on which thread & no strength to go back & find it, but it was on one of the recent positive PACE debunking related stories)...
This thread was split from the thread: Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF The chair of the Northern Ireland Health and Social Care board attended our conference in Belfast, and we can now share the promise he made us on Tuesday - that he will send out a...
The public relies on scientists to report their findings accurately and completely, but that does not always happen. Too often, researchers announce only their most favorable outcomes, while keeping more disappointing results well out of sight. This phenomenon, first identified by the...
My mum is attending the conference at the moment and is sending a few photos over! Thought you might like to see this @Janet Dafoe (Rose49) . Think my mum is finding the conference a bit emotional, she looks a bit teary in some of the photos <3. Apart from attending a talk by Dr Shepherd a few...
I have known the very experienced health journalist from the BBC who is making this programme for many years This is a serious investigative programme that is looking at the management of children with ME/CFS, child protection issues and controversies surrounding activity management, GET and...
Crawley has made a grave error in judgement here - but at least her stupidity means she's saying to a wider public medical audience just how she feels about many thousands of patients and family member and scientists who’ve written to her to complain about some of her studies or methods. She...
And on the flip side........they are not informed about the research funding being supported by the same 'vexacious' people something EC conveniently sweeps away. @Nephrofan now you can access this site please take the time to look at the real scientific research projects that members are...
Another factor is that it is very convenient for doctors given the responsibility of managing ME/CFS to be able to pretend that something is known about the disease and that there is a treatment. Especially when that treatment involves sending the patient off to a psychologist. And the...
Hi Dr Edwards and everyone here I am this Sridharan fellow! I came across this thread as a result of replies I have been getting on twitter and hence, I thought I will clear some things up. First of all, I am not employed by BRS to tweet nor do I know Dr Crawley. I have never heard of her...
New open-access peer-reviewed commentary by me, Karen D Kirke, on patient surveys published online in Journal of Health Psychology today, ME Awareness Day: http://journals.sagepub.c... (=online version) http://journals.sagepub.c... (=pdf) Title: “PACE investigators’ response is...
The PACE trial re-analysis paper (Wilshire et al) is now Open Access - thanks to the MEA! Full paper: http://www.tandfonline.co... Acknowledgements This paper represents a collaborative effort between psychology researchers and patients. In addition to those named as authors, several others...
https://www.crowdrise.com... VIROLOGY BLOG'S TRIAL BY ERROR: REPORTING ON PACE, ME/CFS AND RELATED ISSUES https://s3-us-west-1.amaz... BENEFITING: The Center For Scientific Integrity Inc EVENT DATE: MAY 26, 2017 THE STORY: I am an investigative reporter with a doctorate in public health...
BBC PROGRAMME UPDATE (Wednesday 7th June) Having just spent nearly two hours with the BBC this morning I hope I can once again reassure people that this is going to be a constructive, helpful and quite long BBC radio programme that will be covering (in particular) issues relating to the...
An interesting development. I think it may be difficult for AfME to extricate itself from CMRC. However, I would encourage MEA to follow MERUK in this move. Recent events have made it time for this organisation to be closed down. It has no credibility outside its own membership. Once everyone...
Amy Maxmen is a former mentee of mine and it's great to see her do good work like this. She recently started working for Nature out of the Bay Area after covering Ebola in West Africa and other daring adventures. She's a good reporter who is now in the front door as more findings emerge. Oh, and...
This answer is really very thin. Would a meeting on hypothyroidism have been billed ' A Day with the Cretins' (cretin is the official medical term for congenital hypothyroidism) or a meeting on learning difficulties A Day with the Morons'. Even if this is lighthearted self-deprecation it says...
:thumbsup::thumbsup::thum... An excited member just emailed me about this! It's too good to not share right away. I don't know the details, Terri Wilder posted it on Twitter and she'll be sharing more (see below) 868694846739009540 and Tom Kindlon retweeted (if I understand this right)....
Have anybody notice the happy faces and good attitude on pics? Under the circumstances and what we face, I think we have a great attitude as a community. The general attitude at this conference is very uplifting. Everyone is just so happy to see the support, and to see so many scientists so...
That's good to hear. It seems perhaps the problem was that Prof Davis was under the impression he was to be interviewed about his work and was taken aback, understandably, to find himself being asked about child protection issues etc in the UK. But we've often said that there's a big story...
I don't understand this. How can stuff presented at a meeting possibly be confidential? Confidential from whom? Who decided who could hear it and who could not? How is that science? Scientific research that is still in progress and not published or ready for the public is being presented and...
From Q. 9 in the MEGA Q & A http://www.megaresearch.m... "Patients with ME/CFS will be identified by clinicians in the NHS clinics which use NICE guidance to determine if patients have ME/CFS. This means patients with other causes of fatigue will not be recruited including, for example, those...
