Write up of recent ME conference

Welcome to this week’s blog! As some of you know, we are in the process of setting up an in-house research department at The Optimum Health Clinic, which is an immensely exciting step for us in our mission to make the work we do available to more people. We will be giving you more information on this very soon, along with launching our brand new website, assuming Alex doesn’t take too much time off on his impending paternity leave!

However, in the meantime, we thought you might be interested in reading a summary by our new Director of Research, Dr Megan Arroll, from a recent research conference she attended with our Director of Nutrition, Tanya Page. This review gives a fascinating overview of different perspectives in the research community, and we are very excited to start contributing to this field of knowledge from within The Optimum Health Clinic. You can read the review below.

We are also very excited this week to let you know about the latest Optimum Health Clinic Foundation fundraiser. It is a coast to coast cycle ride by the father of a patient at the clinic, and you can read about it at: http://www.justgiving.com/Ian-Hatton

Thank you to everyone who supported Nancy on her sponsored walk last month, which raised over £1,000 in the end. Please do offer your support to Ian as well, it means a huge amount.

Conference Report

The 6th Invest in ME International ME/CFS Conference 2011 was entitled ‘The Way Forward for ME – A Case for Clinical Trials’. There were 11 speakers giving scientific presentations at this day conference in addition to introductions by Invest in ME and Prof. Malcolm Hooper.

The first speaker was Annette Whittemore form the Whittemore-Peterson Institute in Nevada, USA. Mrs. Whittemore began by stating that the Institute is an organization that studies the aetiology of neuro-immune diseases such as ME, fibromyalgia and Gulf War syndrome, using a ‘systems biology approach to disease’. The Institute’s physical building holds the an administration department, research centre and later this year a fully functioning clinic will be opened; this set-up will allow a clear route of communication between researchers and clinicians. Mrs. Whittemore went on to describe some of the challenges in researching ME, most notably the lack of funding. She quoted that in the USA $135 million is spent in multiple sclerosis (MS) research were as only $6 million is devoted to ME research. However, she spoke with a great deal of hope in identifying a clear physiological pathway and subsequent treatments for neuro-immune disorders.

Dr. David Bell, also from the USA, followed with a very interesting talk on a longitudinal study of a cluster of 210 individuals with ME/CFS in the town Lyndonville, New York. Dr. Bell stated that at 13 years after the initial study in 1985, 80% of children sampled (60 of the 210 individuals) were ‘doing well’, with 20% reporting continued symptoms. Of this 80% of children that said they were ‘doing well’, at closer inspection half had ongoing symptoms whereas half could exercise and did not present with ME/CFS symptomatology. This led Dr. Bell to question whether the participants’ ‘recovery’ was an adaptation to symptoms rather than the complete absence of ill health. In attempt to explore this idea, Dr. Bell carried out an additional study on the original sample and used a number of questionnaires and also an upright activity measure (i.e. counting the number of hours of upright activity and movement) and found that only 8% could be defined as ‘well’. The remaining participants fell into a ‘remitting’ group (72%) and a ‘persistent’ group (20%). The key finding in this study was that although the ‘remitting’ group define themselves as ‘well’, on inspection of the questionnaires and activity measure they would still defined as having mild to moderate ME/CFS; in other words they had adapted their lives to the restrictions of the condition and did not identify themselves as still having an illness even though they did experience symptoms.

Dr. Anreas Kogelnik from California and the founder of the Open Medicine Institute presented a model of collaborative, translational research which integrated biotechnology, informatics, social networking and biosampling. The key to this model was proposed as personalised rather than generalised medicine and appeared suited to such a complex illness such as ME/CFS. Dr. Kogelnik outlined a number of technological advances that may help shed light on this condition including integrated activity monitors that are connected directly into a research database.

Dr. John Chia, an infectious disease specialist again from California, outlined the role of enteroviruses in the aetiology of ME/CFS. Dr. Chia stated that there are more than 70 different types of enteroviruses that can affect the nervous system, heart and muscles and the symptoms reported by those with ME/CFS are consistent with these findings. In his paper ‘Chronic Fatigue Syndrome Associated with Chronic Enterovirus Infection of the Stomach’ Dr. Chia and his colleagues found a high number participants (82%) had enteroviral RNA in their digestive systems and additionally there was a correlation between disability and enteroviral RNA in the samples. Dr. Chia’s work points to the possibility that antiviral drugs may be used as an effective treatment for ME/CFS and he has found that around half of patients tested respond to antiviral treatments.

Prof. Geoffrey Burnstock presented a talk on purinergic signalling and central nervous system disorders. The role of ATP as a co-transmitter with established neurotransmitters in both the peripheral and central nervous system was outlined and the importance of purinergic signalling in a range of disorders including stroke, and neurodegenerative diseases, epilepsy, cognitive, mood and neuropsychological disorders was described in relation to the potential development of novel pharmacological therapies based on this mechanism.

Dr. James Baraniuk of Georgetown University, Washington DC, discussed his team’s work on proteomics (proteins). Dr. Baraniuk and colleagues investigated differences between genetics, pain sensitivity, muscular and autonomic nervous system function between individuals with Gulf War Illness (GWI) and healthy veterans. This research has unearthed an association between a certain genotype for the enzyme carnosine dipeptidase-1, which degrades two of the body’s important antioxidants, and GWI. Currently the Georgetown University team is conducting a similar study into ME/CFS whereby a lumbar puncture will be carried out to measure the spinal fluid pressure in those with ME/CFS and an evaluation of the proteins in spinal fluid. It is these proteins said Dr. Baranuik believes will differentiate those with GWI and ME/CFS from healthy controls and therefore help to understand the aetiology of illness.

Prof. Simon Carding from the University of East Anglia and the Institute of Food Research presented ‘A Gut-Brain Link for ME/CFS’. Prof. Carding studies the gastro-intestinal tract in an effort to understand the relationship between our immune response and gut function and, in particular, how the microbes that reside in the gut and environmental microbes cause disease. Prof. Carding discussed a very interesting theory regarding the breakdown in tolerance of commensal gut bacteria and illnesses such as in inflammatory bowel disease, where the body’s immune system is activated because it can no longer ignore or tolerate these microbes. This work highlights the possibility of probiotic treatment for those with ME/CFS who are found to have this intolerance.

Dr. Øystein Fluge and Prof. Olav Mella from the Institute of Medicine, University of Bergen in Norway outlined work on B-cell depletion in ME/CFS. All conference attendees were asked not to pass on details of the pilot study as the researchers are in the process of publishing the results.

Prof. Kenny De Meirleir from the Virje Universitet in Bruessels outlined a staggering number of tests that he has found to show abnormalities in those with ME/CFS. Prof. De Meirleir’s suggested that individuals could be treated on a case-by-case basis in line with their physiological test findings.

The final presentation was made by Dr. Judy Mikovits who was one of the research team in the recent XMRV study. Dr. Mikovits strongly argued against the theory that the association between XMRV and ME/CFS in the original Lombardi et al. 2009 paper was due to contamination. Dr. Mikovits’ research group has carried out subsequent studies and she believes there is a role for antiviral drugs, non-steroidal anti-inflammatory drugs and metabolic/mitochondrial support in the treatment of ME/CFS. This view of antiviral treatment for ME/CFS was supported by Dr. Wilifried Bieger who describes data from a German study where the Epstein-Barr virus was seen in a sample of ME/CFS patients.

Overall, my personal feeling is that, at present, there is a great deal of high-quality, biomedical research being conducted around the world an attempt to understand the aetiology of ME/CFS; all with the goal of finding effective treatment. Research is a slow process that takes time and, perhaps, more importantly money, so I would refer back to Mrs. Whittemore’s illustration of the gap between funding for ME/CFS and MS. I sincerely hope that some of the studies presented at this conference will instigate more grants and financial support for research in this area and thank Invest in ME for organising such an informative event.

Dr. Megan Arroll

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