Invest in ME London conference 2012

[Kate_UK]

http://blog.ldifme.org/2012/05/news-clinical-autoimmunity-working.html

 

[ukxmrv]

Thanks Kate

wonderful news!

I'm pasting part of the page in here as the lines on the idifme page make me dizzy and nauseous so hope will help others with the same problem

NEWS! Clinical Autoimmunity Working Group

Building a future for research into ME

To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia - in cooperation with Bond University and University of East Anglia - to establish a Clinical Autoimmunity Working Group which met in London on 30-31st May 2012.

INTERNATIONAL SCIENTISTS EXPLORE AUTOIMMUNITY IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME

Medical and scientific experts from around the world convened in London on 30 and 31 May to discuss recent scientific developments in understanding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Co-Chair of the clinical autoimmunity working group for ME/CFS, public health physician Dr Don Staines stated ‘The recent discovery from researchers in Norway that an anti- CD20 B cell- depleting drug had a marked benefit in the treatment of ME/CFS has sent a clear message to scientists and medical practitioners around the world that this disease may have an autoimmune origin’.

While the clinicians who made the discovery, Dr Oystein Fluge and Dr Olav Mella and co-workers remain guarded in drawing unwarranted conclusions from the study published in PLoS late last year, further studies are now being planned in the hope of extending the study to a number of clinical sites and to increase the number of patients in the studies.

Dr Staines said ‘The findings of Drs Fluge and Mella and their co-workers are consistent with theories previously published that ME/CFS may be an autoimmune disease. Despite compelling evidence that this disease is linked epidemiologically to infection and the disorder possibly being a post-infection disturbance of the immune system, little funding has gone into studies of autoimmunity. This is clearly a multi-system illness which has been badly managed in terms of the research agenda.’

Experts who will attend the meeting include Professor Noel Rose, Director of Autoimmune Disease Research at Johns Hopkins Hospital (USA), Professor Stephen Miller (USA), Dr Mario Delgado (Spain) and Professor Hugh Perry, the chairman of the UK Medical Research Council Neurosciences and Mental Health Board. Immunological discoveries which may serve to act as biomarkers for ME/CFS will be presented by Dr Sonya Marshall-Gradisnik, Bond University, Australia.​

 

[Sing]

Notice how real scientists are precise and cautious in their conclusions whereas the more fraudulent ones overgeneralize and jump to conclusions from little or no definite evidence. Of course we want them to have the
answers now. I see us as like the children in the back who keep calling out, "Are we there yet?" Or to use a different comparison, we are like the prisoners in a cattle car on a very long trip across Siberia, a trip which has gone on for decades for some of us. Others are only recent arrivals, in the shock of their first losses... This is why we are so wanting and needing to reach our destination.

 

[Xandoff]

researchers in Norway that an anti- CD20 B cell- depleting drug had a marked benefit in the treatment of ME/CFS
Sing, Thanks for posting this. I like your cattle car analogy. Yes, we are wanting and needing to reach our destination. ASAP!

 

[Kate_UK]

Experts who will attend the meeting include Professor Noel Rose, Director of Autoimmune Disease Research at Johns Hopkins Hospital (USA)

I hadn't heard this name before, so I googled.

In 1956, Rose and his colleagues introduced the concept of autoimmunity as a cause of disease when they discovered that the human disease chronic (Hashimoto’s) thyroiditis could be reproduced in experimental animals by immunization with thyroglobulin, a major protein constituent of the thyroid gland

 

[Anne]

There's twitter reporting straight from the conference from Jørgen Jelstad, Norwegian author of the book "De bortgjemte" about ME/CFS:
http://twitter.com/#!/debortgjemte

#MElondon

 

[Bob]

I've only just realised the iiME conference was today. I thought it was on Saturday.
Has anyone come across any more sources of info, such as twitter feeds, blogs, or forum threads?

 

[FancyMyBlood]

I've only just realised the iiME conference was today. I thought it was on Saturday.
Has anyone come across any more sources of info, such as twitter feeds, blogs, or forum threads?

Jørgen Jelstad did a great job covering the conference today!

You can read it all here:
http://twitter.com/#!/DeBortgjemte

 

[heapsreal]

can anyone update the conference on this thread.
Im not wanting to join twitter as i dont really have a need for it except for maybe this conference.

cheers!!!

 

[Sasha]

can anyone update the conference on this thread.
Im not wanting to join twitter as i dont really have a need for it except for maybe this conference.

cheers!!!

Hi heaps - you don't have to join twitter to read it - just click on that link and you can read Jorgen's twitterfeed. He really did post some interesting stuff.

 

[heapsreal]

Hi heaps - you don't have to join twitter to read it - just click on that link and you can read Jorgen's twitterfeed. He really did post some interesting stuff.

Thanks

 

[Enid]

So much going on now - it's great to hear. Thanks to Iime for organising science collaborations. (REAL science).

 

[alex3619]

I've only just realised the iiME conference was today. I thought it was on Saturday.
Has anyone come across any more sources of info, such as twitter feeds, blogs, or forum threads?

Hi Bob, I have been reading this:
http://storify.com/Kati/invest-in-m...rce=facebook.com&utm_content=storify-pingback

Rituximab is looking much more interesting. They found out why some did not respond and fixed the problem (thyroid issues) and they found a way to prevent the relapse when it starts wearing off - lower more frequent doses I think is the implication. Bye, Alex

 

[Esther12]

Rituximab is looking much more interesting. They found out why some did not respond and fixed the problem (thyroid issues) and they found a way to prevent the relapse when it starts wearing off - lower more frequent doses I think is the implication. Bye, Alex

I feel cynical enough about CFS research, and 'CFS' as diagnosis, that the better the news, the more likely I think it is that it's a wild goose chase. Hopefully this is just a cognitive distortion, but reading that good news did make me feel less hopeful about Rituximab.

 

[mobyjoby]

sounds like 28 out of 30 patients in the rituximab study fit the canadian criteria - would be interesting to know if the other 2 were in the placebo or the drug group and if they were responders or not

 

[Ember]

sounds like 28 out of 30 patients in the rituximab study fit the canadian criteria - would be interesting to know if the other 2 were in the placebo or the drug group and if they were responders or not

Here's a partial answer to your question, Jo: “One of the individuals who responded to placebo was also one of the two subjects who did not fulfill Canadian criteria for ME/CFS” (http://www.research1st.com/2011/10/19/rituximab-trial/).

 

[Bob]

Conference blog from Cort:
http://forums.phoenixrising.me/inde...ab-biomarkers-progress-what-we-learned.17768/

Conference blog from 'CFS Patient Advocate':
http://cfspatientadvocate.blogspot.nl/2012/06/investinme-roundtable-discussion-may-30.html

 

[Ember]

Conference blog from 'CFS Patient Advocate':
http://cfspatientadvocate.blogspot.nl/2012/06/investinme-roundtable-discussion-may-30.html

Thanks, Bob. I'd love to read Jorgen Jelstad's pre-conference talk, “Words Matter.” It may be worth rereading his translated article, “How important is the Rituximab-study?” (http://debortgjemteinternational.wordpress.com/2011/10/30/how-important-is-the-rituximab-study/). Given the comment below, perhaps Jorgen could be moved to translate more posts:

Very informative blogpost by Norwegian journalist Jørgen Jelstad with (pre-publication) comments by Nancy Klimas, Anthony Komaroff and José Montoya on the importance of the Rituximab study. This is the first of his posts Jørgen Jelstad has translated in English. He will translate more items when he finds the time (http://www.facebook.com/permalink.php?story_fbid=180772525341643&id=122950357787779).

 

[Sasha]

Thanks, Bob. I'd love to read Jorgen Jelstad's pre-conference talk, “Words Matter.” It may be worth rereading his translated article, “How important is the Rituximab-study?” (http://debortgjemteinternational.wordpress.com/2011/10/30/how-important-is-the-rituximab-study/). Given the comment below, perhaps Jorgen could be moved to translate more posts:

Thanks for this link - I'm reading it now, it's fascinating.

 

[Kate_UK]

Journal of IiME conference edition now here

http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf