Source: Phoenix Rising, June 2, 2013
By Mark Berry
The presentations you’re about to read about are only half the story; the opportunity to mingle and network with a family of top researchers, physicians, campaigners and patients from all over the world, is absolutely priceless. And this year, the new spirit of hope and togetherness in the air was a joy to behold.
The title this year was “Mainstreaming ME Research: Infections, Immunity and Myalgic Encephalomyelitis”, and the twin themes – an emerging consensus around a ‘paradigm shift’ to thinking about ME as an autoimmune disorder, and a focus on strategies for effective research and a breakthrough into the scientific mainstream – fit together perfectly. For it’s the growing recognition that immune treatments like Rituximab and Ampligen are having dramatic effects on many patients who were once bedbound and without hope, together with two decades of often confusing but highly suggestive research findings of immune dysfunction in ME patients, that is now threatening to propel ME from the backwaters of science right into the limelight.
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A key part of that process has been Invest in ME’s Clinical Autoimmunity Working Group, formed last year – a group of researchers which meets before the main conference to discuss the latest scientific developments. The creation of international collaborative networks is surely valuable in any field of science, but in a field that has been so neglected and so under-resourced for so long, it’s even more important to maximize resources.
Once the working group has done its thing, next comes the pre-conference dinner – the Patient Advocate reports on Linda Tannenbaum’s pre-conference dinner presentation here.
And then it’s on with the main event: time for conference-goers to pick up their copy of the Conference Journal, mingle and chat with old friends over coffee for a while, and settle down for the first item on the Agenda.
- Dr Ian Gibson announces new PhD studentship in Norwich looking at gut bacteria. “Things are beginning to pop, across the nation and across the world…There’s a new spirit loose, I think, in the ME field”.
- Dr Peterson keynote: “It’s time to stop querying patients and begin developing new diagnostics”. We need both clear endpoints and clear populations for successful research.
- Dr Kogelnik: Medicine is at a crossroads, and ME will be “key disease” in coming “health/disease revolution”: technology enables the ‘Quantified Self’ and personalized medicine. Govt agencies “not the enemy”, it’s “their ignorance and our lack of data” – our job is to bring them the data so it can’t be ignored.
- Dr Rakib Rayhan: In Gulf War Illness, Baraniuk et al believe their brain scans after exercise challenge produced a “quite robust biomarker”, and they want to extend to ME/CFS. New study out in a couple of weeks finds 2 subgroups for pain and fatigue post-exercise.
- Professor Greg Towers puts XMRV saga to bed: valuable lessons learned mean this kind of situation should never happen again.
- Professor Mady Hornig: Final analysis of cerebrospinal fluid now underway; possible finding of ‘different patterns of cytokine associative networks’ and ‘potential novel candidate’ in CSF still needs to be confirmed.
- Dr Clare Gerada steps into the lions’ den and “tells it straight” – attempts to “build a bridge between the largest Royal College and a very important problem” – hopes to “be better able to work with you to improve the care you receive from my profession”.
- Dr Donald Staines stands in for Professor Sonya Marshall-Gradisnik. Publications expected in next weeks and months; still finding “sustained, demonstrable, significant impairment in NK cell function”, “highly confident” of up-regulation of T-reg cells; “clear derangement in the immune system…it’s irrefutable”, and “anyone who suggests that this might be fixed by exercise therapy should probably be de-registered I think”.
- Dr Amolak Bansal senses a “paradigm shift” towards model of subtle form of autoimmunity in ME; suspects patients’ B cells are failing to mature properly and producing low avidity antibodies; lasting response to B-cell depletion therapy may require clearing the viruses responsible in addition to ‘rebooting’ the B cells.
- Norwegian ME Association presents awards to Invest in ME founders Richard and Pia Simpson, and to Professor Malcolm Hooper for “untiring and exceptional contribution to the ME cause”. Hooper accepts with his shortest ever speech.
- Carmen Scheibenbogen and her team at Charite are finding similar immune dysfunction and share many of the same theories as Bansal, Fluge and Mella. They’re trying to develop a diagnostic test, investigating EBV infections in depth, and seeing 3 immune subtypes of CFS, hoping for solid data in about 6 months.
- Professor Mella and Dr Fluge are closing in on publication of their follow-up study on Rituximab therapy. Some details were presented, along with a fascinating hypothesis, but that’s all embargoed awaiting publication.
Read the rest of this article here.