‘Voices’ was screened at the Stanford Medical School ME Symposium last week on March 19th, followed by a panel discussion – ‘Media Portrayal of ME’. The symposium was packed with doctors and researchers as well as some patients, in a very large hall with three screens at the Li Ka Shing Center for Learning and Knowledge. It was great to hear about so much research being undertaken in such a focused way to address so many key aspects of this illness. Afterwards I met the Dean of the Medical school and he appreciatively took a dvd to watch, as did Dr Elizabether Unger who took a dvd for her colleagues at the CDC. I was delighted when Mark Zinn told me that watching the film two years ago at Mill Valley had encouraged him to research ME. Using qEEG and eLORETA he and his wife Dr Marcie Zinn have been showing that there are definite signs of brain pathology and that EEG abnormalities are in proportion to the severity of illness, so could be used to monitor treatment. Prof Komaroff later echoed their findings of a possible indicator of limbic encephalitis, saying that there could well be a low grade ongoing encephalitis. Prof Komoroff’s summing up of the IACFS/ME conference can be heard here. Previously, Prof Hooper in his “Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research” paper of 2007 made the claim that; “There can be little doubt now that myalgic encephalomyelitis is correctly described as an encephalitis associated with upregulation of pro‐inflammatory immune responses, with downregulation of suppressor cytokines.”
David Tuller, who took part in the post screening discussion, wrote a report about the Stanford and IACFS conferences for Buzzfeed and quoted Prof Lenny Jason – “I was thrilled to see so much good science…… That’s such a sea change. There was such a wealth of research that every session you went to you saw abnormalities being pointed out in different domains. It was breathtaking.”
Tuller goes on to say –
‘At a pre-conference gathering at Stanford… scientists from the university reported that levels of 13 chemical messengers of the immune system known to increase inflammation, called cytokines, paralleled disease severity in almost 200 people with ME/CFS. In a study of a small group of patients, daily levels of a cytokine called leptin rose and fell over 25 days in accordance with subjects’ self-assessment of whether they were experiencing more or fewer symptoms.
Researchers at the Stanford and San Francisco meetings also reported that ME/CFS patients exhibit strikingly different EEG patterns than those of healthy controls, perform poorly on cardiopulmonary exercise tests (especially when they undergo the testing two days in a row), frequently suffer from co-morbid conditions such as fibromyalgia, are more likely to get sick if one or more family members also has ME/CFS or a related disorder, and experience pronounced abnormalities in many physiologic functions.
Dr. Jose Montoya, an infectious disease expert and the leader of the Stanford research effort, said the increased understanding of ME/CFS as an inflammatory illness would generate new approaches for treatment, even in the absence of a precise understanding of the triggering events.’ Read the full article at
A report of Prof Komaroff’s overview of the conferences can be found here. http://www.meactionuk.org.uk/Komaroff-Summary-San-Francisco-March-2014.htm