Phoenix Rising tweeting live now from Invest in ME 2014 Conference 30 May

[NK17]

My guess - and it really is a complete guess - is that they encountered some difficulties finding a high-profile publisher for the follow-up study which had basically the same results as the first study, and pretty soon they found they were then into a whole new ball-game - funding and preparation for the big multicentre follow-up study must have been the top priority, and with the UK Rituximab study getting funded, we now have at least two replication studies in progress for the Rituximab results. So what would be the benefit of publishing the 2nd Rituximab study now? Minimal, perhaps...and maybe the cost/benefit just didn't justify the time it would have taken to complete it. I can certainly relate to the experience of being absolutely committed to doing something, and planning to do it, and then finding myself snowed under with even higher priorities arising from the original plan. One thing I'm confident of, they and our other top researchers are committed to progressing the science of ME/CFS as soon as possible, and all the researchers I've met are passionate and engaged and determined, and they have a lot more understanding than I do about the detail of these issues. I'd like to see that follow-up study published, but the two Rituximab replication studies are far more important...if it's a question of where to spend limited time, the two replication studies have to be their top priority...

Your guess makes very much sense Mark!

The two Rituximab replication studies are of absolute, tantamount importance!!

Next we need a third one here in the US!!!

By the way thanks for tweeting from the conference.

 

[Jonathan Edwards]

I would agree with Mark's anaysis. Getting things published is not always straightforward! The Norwegian team are very generous with discussion of their findings with colleagues and to be honest my interpretation is that what matters is that there is nothing to suggest not going ahead with their bigger trial. The follow up study has been very helpful for planning but it was never going to provide definitive conclusions. Things take time, and usually more time than it seems they should.

I would like to take the opportunity of congratulating IiME and all the delegates at the meeting on such an impressive exercise. This year I attended both the workshop and the open meeting and I feel I am beginning to appreciate the breadth and depth of the quality research going on. And colleagues from other research fields invited this time seemed to be as drawn in to the ME problem as I was last year. It is all still at the stage of elusive clues, but you have an ever expanding team of sleuths on the job. People are getting wise to what they are really looking for and how to look and that to my mind is 80% of the battle.

 

[SDSue]

@Sasha Thanks for providing the link to tweets. And thanks to the person who tweeted. Appreciated much.

 

[Sasha]

I would like to take the opportunity of congratulating IiME and all the delegates at the meeting on such an impressive exercise. This year I attended both the workshop and the open meeting and I feel I am beginning to appreciate the breadth and depth of the quality research going on. And colleagues from other research fields invited this time seemed to be as drawn in to the ME problem as I was last year. It is all still at the stage of elusive clues, but you have an ever expanding team of sleuths on the job. People are getting wise to what they are really looking for and how to look and that to my mind is 80% of the battle.

Thanks very much for reporting back on that - it sounds hugely encouraging.

 

[rosie26]

Great to hear that @Jonathan Edwards. Thanks.

 

[Firestormm]

First conference report published by Dr Ros Valings posted online by Invest in ME 9 June 2014:

CONFERENCE REPORT

9th Invest in ME International Conference

BIOMEDICAL RESEARCH INTO ME

On 30th May, 2014 I was privileged to attend the 9th Invest in ME conference in London.

The conference opened with a brief trailer about the film "Perversely Dark" - a film produced in Norway about 2 young people with ME/CFS.

This presented a moving preview of a "must see movie" with English subtitles.

The main conference was then opened by Dr Ian Gibson.

The first speaker was Prof Jonathan Edwards (London) who spoke about the lessons learnt for ME from his lifelong study of Rheumatoid Arthritis (RA). He felt he was looking from the "outside". He likened the developing studies in ME to how things had evolved with RA from 1974. The tools needed are: 1. Reproducible bio findings to build on an explanation of symptoms, and 2. A theoretical framework to build upon. By 1974, a lot had been learnt: genetic markers, an association with smoking and presence of antibodies in most patients. (Rheumatoid factors and/or anticitrulline). Inflammation is mediated by the cytokine TNF.

He then asked what factors cause disease. These include: internal genetic, environmental and internal stochastic (random) - an internally driven mutation. He discussed the antigen/antibody/B cell/T cell links. The immune complex Fc gamma IIIa expresses in many tissues and leads to release of TNF. There do not have to be external triggers necessarily, but there can be self-perpetuating auto-reactive B cells. Most auto-immunity arises by chance production of subversive B cells. The logical treatment is to remove all current B cells and start again. e.g. Rituximab - treatment with this was begun in 1998 for RA. Not all patients got better, but 2/3 had a good response - many eventually relapsed, therefore this is not the whole problem.

Lessons for ME: The mechanism may be subtle. Genetic clues are like gold-dust. (e.g. NK receptors). Specific auto-antibodies make things easier, but evidence for a general immune mechanism may do. There may be no specific infective trigger, but for some with ME, maybe there is. A cytokine pathway helps. There will be several "ME diseases"- just like RA. One can be surprised by what can be achieved.

In the Q&A session, he was asked if Rituximab was safe in the presence of infection. The consensus was that it should not be a problem in general, but that it should not be used in those with hepatitis C...

Read more: http://www.investinme.eu/report.html