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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...

And here's a doctor's response of 2 days ago, as well as my response to him of today: Ms. Barker, I received a letter addressed “To Mayo Clinic” but with my name on the envelope in which you offered a detailed explanation of your disagreements with material about chronic fatigue on the Mayo...

My original letter of 6/25: June 25, 2017 To Mayo Clinic: Re: Myalgic Encephalomeylitis/Chronic Fatigue Syndrome (ME/CFS) This letter is rather lengthy and contains several hyperlinks; if you would care to receive it in e-mail format which would be much simpler to navigate, please let me...

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...

Worth noting that this Daily Mail article is now resulting in other media enquiries I have just been dealing with a request to do an interview on Spanish radio! CS

Up until this point in time I have taken the view that I would serve patients best by not taking an active 'interested' advocacy role but rather to emphasise the fact that I am an entirely disinterested party, prepared to give my opinion when asked. I think that was the right thing to do....

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...

21528 A room full of scientists working together to fight ME/CFS!

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...

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. -------------------------......

Several months ago I decided to write to the Mayo Clinic because of their abysmal website and treatment for ME/CFS. It took me a few months to get the letter done, and then more work to try to find out who/where to send it. I ended up sending 6 copies (it's a long story) on 6/25. I am stunned...

https://www.reddit.com/r/... A plea from a fallen doctor on Chronic Fatigue Syndrome (ME/CFS) (self.cfs) submitted 11 hours ago by fallendocR53-82 He could be me. I am a GP in the UK who also I am ashamed to say bought into the attitude that no abnormality on standard tests = no somatic...

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21551 Breakfast this morning with Olav Mella, Ron Davis, and Maureen Hanson

http://www.dailymail.co.u... Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It's linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — 'like a dead battery'. The condition first reached...

Wonderful dinner tonight at the hotel with those who flew in today. 22988 Alain Moreau, Cindy Bateman, Mario Capphechi 22989 David Bell, Maureen Hansen 22990 David Maughan, Cindy Bateman, Baldomero Olivera, Ron Davis 22991 Linda and Don Tannenbaum, Jonas Bergquist And Ashley and I were there...

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,...

My parents were given the stark choice to either allow me to be admitted to a mental hospital, aged 15, or be threatened with prosecution and have me forcibly removed from their care. They reluctantly agreed to hospitalisation, where I remained for 9 months, subjected to an appalling regime of...

Ashley and Janet are kindly posting picture to make us feel more included in the scientific section. Imagine, poor Whitney is probably completely unaware of what his amazing family are doing for us all. Ron has called on personnel friendships to battle this illness and probably done the most a...

Telling potential authors to fuck off is entirely reasonable? I can cut angry patients some slack, but people like Coyne who are merely speaking on our behalf, not so much. I think valentijn hits the nail on the head: 'if a good "fuck off" was ever warranted, it's one aimed at the PACE fan...

thats unfortunate - possibly edited out Dr Ron Davis? or saved it for a follow up article? @Jonathan Edwards @charles shepherd may have some knowledge? My understanding is that Jerome Burne never had any agenda to cover recent scientific work. I think there may have been a bit of a...

Hi guys, What an amazing opportunity this is! I won't say too much as you can read details below, but this is absolutely unprecedented and an incredible opportunity if you can make it! https://www.omf.ngo/wp-co... https://www.omf.ngo/wp-co... https://www.omf.ngo/wp-co... Chronic Fatigue...

As a reminder, Jerome Burne also wrote these articles : ME: The truth about exercise and CBT https://www.hippocraticpo... The serious trust deficiency afflicting medical advice and what to do about it http://healthinsightuk.or... (The DM article really makes Simon Wessely look like a morron...

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...

It’s been a wild 72 hours. Publication of the special issue of Journal of Health Psychology is going forward as planned on Monday. PLOS Mind the Brain is dead, long live Mind the Brain. My colleagues and I came under heavy attack on two fronts. There was a last ditch attempt to block...

Yes, it's yet more evidence of Coyne being abusive... Sigh. Yes. Coyne does seem to do a lot of good, but often in a rather bad way. The examples cited in this article are a gift to the other side. There's a world of difference between Coyne losing his temper and venting privately at a couple...

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...

Cytokine signature associated with disease severity in chronic fatigue syndrome patients Jose G. Montoyaa,b,c, Tyson H. Holmesb,c,d, Jill N. Andersona,b, Holden T. Maeckerc,d,e, Yael Rosenberg-Hassonc,d, Ian J. Valenciab, Lily Chub, Jarred W. Youngerf,1, Cristina M. Tatoc,d, and Mark M. Davis...

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...

Ashley and Janet are kindly posting picture to make us feel more included in the scientific section. Imagine, poor Whitney is probably completely unaware of what his amazing family are doing for us all. Ron has called on personnel friendships to battle this illness and probably done the most a...

Let me guess, this was the last argument he put forward (and likely the real reason why he has taken a pro-PACE position). It seems the position that these people are taking is not about the facts, it's about deliberately providing false hope for treatment for a condition that has no worthwhile...

: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)....

21516 Ron, Ashley, Linda and Raeka having breakfast with Swedish scientists Bergquist and Blomberg right now.

I do hope this project is about to snowball IOXCjZPboFw

Jarred Younger talks about the daily blood draw study, one of his most recent studies; what he has found and what he thinks it means. QHIvcw9SNFo www.youtube.com/watch?v=Q...

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...

It seems that Mr Jeremy Hunt, the UK health minister, has announced a further £1.3B for mental health staff. People are already saying the figures do not add up but it looks as if half of this is going on psychotherapist salaries for 'talking therapies'. See https://www.theguardian.c... I think...

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...

hello all, yes the PACE authors displeased with my PACE GATE editorial did the following 1. phoned my University and made direct complaints to my dept head 2. put pressure on the editor of the Jr of Health Psych to retract (how funny) part of my editorial 3. pressure the editor to get me to...

https://www.reddit.com/r/... A plea from a fallen doctor on Chronic Fatigue Syndrome (ME/CFS) (self.cfs) submitted 11 hours ago by fallendocR53-82 I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental...

As someone who was in this unfortunate position, not once but twice as a child, the content of this paper literally makes me weep. I wasn't "refusing" anything, I was physically unable to eat, talk, walk, etc. I am not a hateful person, but this woman sickens me to the core.