Reprinted with the kind permission of Phoenix Rising.
By Mark Berry
The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its previous home on Birdcage Walk, on Friday June 3rd, 2016.
You can view the full conference agenda (with photos and biographies of the speakers) here and the Conference Journal is available to download as a PDF. The highly-recommended DVD of the conference is now available for pre-order, and Kina did an incredible job tweeting the conference live for Phoenix Rising.
This article, the first in a series covering the conference, summarises all of the presentations. Future articles will explore selected presentations in more detail.
Welcome and introduction to IIMEC11
Invest in ME’s Richard Simpson kicked off proceedings by welcoming conference-goers to IIMEC11, and took us through the usual conference house-keeping information.
Warning of the scheduled fire-alarm test in the afternoon, he reassured us, “I’m told that the only person with a gun in London today is Ian Gibson, our chair.”
Noting the new venue, with much-improved accessibility, he hoped we would find it an improvement, and he advertised the conference DVD, warning that Early Bird ordering would be closing in the next day or so — but it’s still available for pre-order at a knock-down price.
Simpson thanked the speakers from various parts of the world, recalling again how much they now feel like a family. About 18 countries were represented here today, he said, and he noted in particular the European ME Alliance (EMEA), whose AGM was hosted by Invest in ME the following day.
Simpson hoped that in future they would be able to develop that link and “wrap around” to make these “a set of events which really make progress”. Invest in ME’s Centre of Excellence is “nearly there”, he added, and he advised of the new Twitter hashtags for the final push to get it over the line: #letscresearch and#cofeforme.
With the housekeeping and business quickly out of the way, Simpson introduced a man who, as he rightly said, does so much, out of the headlines, not just for the cause of ME patients but for other causes as well: “the guy with the gun …”
10 Years – Looking Back, Looking Forward
Dr. Ian Gibson — Former Dean of Biological Sciences, University of East Anglia, UK
Dr. Gibson recalled his introduction to the world of ME politics 10 years ago, and said that 10 years later “we’re still fighting on … but there’s a new atmosphere around.”
He admitted that the Gibson report had compromised, and explained why. He expressed strong feelings about the admission that the UK doesn’t keep data on the numbers of ME patients, and about the lack of support for carers: “the world is full of people who want to care and don’t get care and support themselves.”
Gibson suggested five political themes to focus on as part of a “Pledge Card”: European and International Collaboration, Education, Substantial Funding, United Nations, and Centre of Excellence.
And he said he is “never one who thinks this money’s not around, it can be found if you look hard enough,” before asking keynote speaker Dr Vicky Whittemore: “What have you got to offer? …”
Keynote speech: ‘A new research initiative into ME at NIH’
Dr. Vicky Whittemore — Program Director, National Institute of Neurological Disorders and Stroke, National Institutes of Health, USA
Dr. Whittemore from the US National Institutes of Health(NIH) made a big statement just by attending the conference, signaling her intent to encourage international collaboration in ME research.
She hailed the “new dawn” and “new vision” for ME/CFS research in the U.S. government agencies, acknowledging historical problems like the “shocking and disappointing” funding levels.
But she explained how individuals like Ron Davis and Francis Collins had become impatient with the lack of progress and the lack of understanding within NIH of the importance and severity of ME/CFS, and had brought this issue to the attention of the director of NINDS, Walter Koroshetz.
She outlined the emerging agenda for the NIH’s short, medium and long term plans for ME/CFS research. She described recent initiatives including the “deep dive” intramural study, the revitalization of the Trans-NIH ME/CFS Working Group, the call for applications for supplementary grants, efforts to encourage research collaboration, and the public request for feedback on what the research priorities should be.
She said that her “hope and vision” was to return to IiME in the next two years and present a graph showing levels of government funding for ME/CFS research “off the charts.”
‘Clinical Diagnosis of Myalgic Encephalomyelitis’
Professor Olli Polo — Chief of the Department of Pulmonary Medicine, Tampere University Hospital, Finland
Professor Olli Polo focused on the importance of identifying clinical signs in order to establish the credibility of ME in the minds of often-sceptical medical practitioners who “need to see to believe.”
He presented some examples from his own experience as an expert in sleep apnea who sees a lot of ME/CFS patients in the course of his work.
Running through a list of ME/CFS symptoms, he said that they affect the whole of the sympathetic trunk, making ME/CFS a whole-body condition that doesn’t fit well with the prevailing model of medicine.
He drew attention to a paper from Peter Rowe which concluded that a subset of patients with ME/CFS and OI also have EDS.
After describing (with photos) a variety of signs indicating disorders of the connective tissue in his ME/CFS patients, he proposed that connective tissue disorders can allow veins to distend excessively causing venous pooling and problems with blood flow, resulting in multiple symptoms.
He explained how whiplash or hypermobility can interfere with ‘central descending sympathetic tone’ and how excessive firing of damaged C-fibers causes excessive ‘peripheral ascending sympathetic rescue activation’, both of which can disrupt the sleep-wake cycle.
In this way, elastic veins or arteries can result in a phase of prolonged sleep duration followed by a phase of insomnia, he concluded.
‘Autoantibodies to adrenergic and acetylcholine receptors in CFS/ME’
Professor Carmen Scheibenbogen — Professor for Immunology and Deputy Chair, Institute of Medical Immunology, Berlin Charite, Germany
Professor Scheibenbogen summarised the efforts of her team at Berlin Charite to identify autoantibodies in ME/CFS patients. She reviewed the hypothesis that ME/CFS is an autoimmune disease, and the evidence supporting that hypothesis, and explained why antibodies to neurotransmitter receptors are an obvious starting point, supported by the findings of a Japanese study in 2003.
She described her exploratory work with Gerd Wallukat, and her study published in February 2016, which found that antibodies against Beta-2 adrenergic, and M3 and M4muscarinic acetylcholine receptors, were significantly elevated in 29.5% of the ME/CFS patients.
She explained that they had also found a correlation between elevated levels of these antibodies and immune activation, and noted some strikingly familiar symptoms that result from acute Beta-2 and M3 stimulation.
Intriguingly, these two receptors are complimentary, so one might expect to see opposite effects in different individuals and even fluctuating opposite effects in an individual patient.
The research also found that responders to Rituximab had reduced levels of these autoantibodies, whereas non-responders did not. Scheibenbogen finished with some suggestions for possible treatments for those with elevated levels of these autoantibodies: Intravenous gamma-globulin, immunadsorption therapy (now being trialed in Berlin), and of course, Rituximab.
Questions focused on the difficulty of obtaining insurance coverage for ME/CFS and how to overcome this, possible explanations for ME/CFS occurring in outbreaks, potential parallels with organophosphate poisoning, and whether the length of a patient’s illness might affect treatment.
You can read the rest of this informative article HERE.