Discussion in 'General ME/CFS News' started by currer, Oct 15, 2011.
I just got my conference DVD today.
I had an email yesterday currer saying they were dispatched but please not to discuss the Norwegian content (especially on the Web) until the actual publication of findings due reasonably shortly. I will of course respect their request, looking forward to the DVD's though.
I received my DVD's with a note asking me not to disclose the information from the Norwegian doctors.
I would love to see their paper as soon as it is published though.
Thanks for telling me, Enid.
I have not been sent an e-mail, and I have just checked the packaging again - no note. A bit worrying that they are going out if it is still all confidential.
I have amended my previous post. Im glad you folks are there for me!
Hi, i got mine too with no e mail or note, so thnks for letting us know about this. I dont know when i will have time to start watching it -maybe on monday when everyone is back at work and school. One thing that has been bothering me though is that surely the XMRV stuff will be out of date por perhaps misleading? what do others think about this. I dont have much brain power at the moment to work out what has hapened with all that stuff.
Happy watching Justy x
Has the Trisha Groves session, including audience responses, been included?
Dont worry. Ive just watched JMs talk and she emphasises that it is not just XMRV they found but many other related retroviruses.
(I remember that bit, I was there)
Most of her brilliant talk is about the interaction of the virus with the immune system and methods of pathogenesis, so it goes way beyond just detecting the virus, and into how you can show abnormalities consistent with a retroviral infection in patients.
She and Ruscetti are clearly studying in depth what these infections do in the body and how HGRVs maintain themselves as pathogens in ME and what their pathogenic potential is. It is all very patient centred and focused on the potential to treat these infections.
Lots of stuff on blood markers and biomarkers and immune markers.
Can't wait currer - I'll put aside a week - oh to get it into our local GPs - hopefully at the various levels Dr Charles Shepherd (MEA) will be onto that.
Yay! I received the DVD today as well.
I'll probably start watching it during the week.
I also received the email yesterday as well, but no note.
This is the contents of the DVDs:
Dr David Bell.
Dr Andreas Kogelnik.
Dr John Chia.
Prof Geoffrey Burnstock.
Dr James Baraniuk.
Prof Olav Mella.
Dr Oystein Fluge.
Prof Simon Carding.
Prof Kenny De Meirleir.
Dr Judy Mikovits.
Dr Wilfried Bieger.
Dr Ian Gibson - Pre-conference.
Hillary Johnson - Pre-conference.
Have just watched Dr Bells talk on his study into recovery in M.E. It was so interesting and he is a good speaker. It answered so many questions that i had about my own health and supposed recovery from M.E only to get sick again.
He introduces a new term :Health identity confusion. Which arises because people think they are better when in fact they are still sick. 80% of people in his follow up study at 13 years self reported themselves as being well, recovered or doing very well. When he looked at these peoples scores on the questionnaires he could see that they werent actually all well, many of them where still suffering many symptoms and had poor health.
I thought this was ironic as it seems these patients have false illness perception -but a false perception of being well.
Dr Bell was not optimistic about the long term prognosis for the illness which has left me feeling a little sad as i seem to fit his graph of being very ill then over about 5 years improving on functioning with then a general decline that increases over the years.
Lovely man though, i wish he was my GP!
Yes very ironic justy and the complete reverse of W et al - well with false perception of being ill. Their theories gradually collapsing if not already done so.
Yes Enid, all i kept thinking was W is right -there is a false illness belief but in the other direction. This makes so much sense to me as i spent years struggling with ,my health beofre being diagnosed (it took 16 years) and all the while i had to keep denying i was ill as i kept being told there was nothing wrong with me. Of course i see now that i was ill and just waiting for a dreadful relpase -which finally came 3 years ago.
dont despair, I did what you did - struggled on for six years, had a massive relapse, but I have still improved, and even though not well enough to work, my life is pretty good provided I keep to my limits.
I spoke to Dr Bell after the conference, and he emphasised that these awful experiences turn his patients into impressive people for whom he feels admiration.
Hi; got my DVDs, without any attached note, and watched the presentation by Olav Mella and Oystein Fluge--fascinating, and impressive. But a quick search of PubMed does not show their paper as published, so I guess the discreet thing to do is stay silent about their findings until they are published? Or has anyone heard that it is now out and we can talk about it? Chris
Hi Chris, no i think we have to keep quiet still about their study results as they are not yet published.
Currer, thank you for your kind words. I am learning to deal with being ill and accept that where i am is stuck at home most of the time so to this end i have done something i have always wanted to do and started a creative writing course with the Open university which i hope to turn into a degree in Literature. This is what i meant to do when i left school, before babies and life got in the way. So whilst i dont feel blessed to be ill i guess it does have certain advantages. Was Dr Bell as lovely in person as he appears?
All the best , Justy.
Yes, he seemed a very humane, patient - focused doctor and I liked him.
In fact I liked all the researchers, who were visibly stimulated and excited by the research and the opportunity to meet and share with other professionals in this area. Their enthusiasm and excitement was most inspiring and made me feel that better times are coming!
They were all good, commited people and it was wonderful to be there with them.
We still cannot talk on the internet about the Norwegian research.
OK, Justy--mum's the word until I hear a clear "all clear" signal. Thanks. Chris
I think Dr. Bell is nice. I spoke with him for a few minutes when he did his presentation in MA this year.
PS Heres a link to it: http://www.masscfids.org/resource-library/3/309
The Norwegian Rituximab study is out now, as of today, October 19, 2011:
So we can talk about it now! Yay!
You can also try a Google Site Search
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