International Conference on ME/CFS Biomedical Research
Edinburgh Conference Centre, Heriot Watt University, Edinburgh.
Friday 25 th May 2007
Sponsored by ME Research UK and Irish ME Trust.
Report by Clwyd ME's Research Officer: Fiona Jones RGN
I must admit that I had been looking forward to this conference having read a lot of the speakers work before attending. I must say a big thank you to Clwyd ME support group for paying my registration fee and for supporting my attendance. The day may have started with drizzle outside but inside there was a buzz of anticipation at the day to come.
Promptly at 9am the conference was opened by Alex Fergusson MSP, the new speaker of the Scottish parliament, who has a son who has suffered with ME. He was also on the Scottish parliamentary cross party group before the election. His enthusiasm for what could be done, and needed to be done in the future received loud applause and set the tone for the day.
Dr Vance Spence [Chairman, ME Research UK, and Senior Research Fellow, University of Dundee] gave the welcome and the introductions for the day starting with Dr Jonathan Kerr [Department of Cellular and Molecular Medicine, St George’s University of London]. Conference Handout
Dr Kerr's work on gene expression, specifically RNA as opposed to DNA has been heard of by many people. I mention this as the next speaker Dr Estiballiz Olano [Fibromyalgia and CFS genotyping study, Bilbao, Spain] has been looking at DNA differences between controls and ME/FM [fibromyalgia] patients. Dr Kerr hopes that his work will find biomarkers that can be specific enough to ME/CFS that they can be used as a diagnostic tool. When asked how long till that happens, his answer was about 2yrs! Conference Handout
Dr Olano’s work already differentiates controls from ME/CFS patients and FM patients. They now are working on becoming more specific and the aim is to tell those ME/CFS patients who may become severe from those who will be mildly affected. Conference Handout
Dr Sakudo [Department of Virology, Centre for Infectious Disease Control, Osaka University, Osaka, Japan] spoke on an entirely different technique for diagnosing ME/CFS using visible and near-infrared spectroscopy. This basically looks at blood serum and when visible and near infrared light is passed through it what wavelength it absorbs, controls and ME/CFS patients turned out to be different and now they are trying the simple method of placing ones thumb at nail level within the harmless light stream, then reading the results. I must say I found this research novel and it peaked my interest.Conference Handout
Dr Greg Purdie [NHS Dumfries & Galloway] spoke about the need and his work towards a Clinical Network for ME/CFS in Scotland. His Health Board has now recognised ME/CFS as a physical illness, and that it should be treated as such, in relation to benefits and social care. Dr Purdie covers a large rural area, and recognised that not one NHS area has the resources to offer treatments etc to their ME/CFS patients. But if all NHS areas worked as a network, a ME/CFS patient could receive whatever care they required.
Dr Purdie made a lot of sense, and I think it is a question for our Health Boards:
Do you recognise ME/CFS as a physical illness?
And if you do, do you give it the same accessibility to benefits, facilities and social care, as other physical illnesses?
Would you be willing to work with other Health Boards as a network to cover all the care these patients would require?
Professor Jill Belch [Vascular Diseases Research Unit, University Department of Medicine, Dundee] was the next speaker a highly experienced Cardiac Consultant. She became interested in ME/CFS patients due to symptoms that suggested potential abnormalities in vascular reactivity.
I will not go into too much detail, but basically her research shows that ME/CFS patients have a higher sensitivity to acetylcholine, causing Greater Blood Flow THAN their Controls. The other interesting thing was that Gulf War Syndrome and Organic Phosphate affected patient’s reaction was the SAME as their Controls. Conference Handout
Professor Belch’s associate Dr F. Khan talked about inflammation and arterial stiffness in patients with ME/CFS. ME/CFS patients have significantly increased levels of Plasma hs- CRP, F2a isoprostanes and oxLDL that correlate positively with arterial stiffness. In a multiple regression model CRP is the strongest predictor of arterial stiffness, conferring a significantly increased risk of a future cardiovascular event for ME/CFS patients.
An investigation into biochemical and blood flow aspects of ME/CFS in children has been done at Dundee, results are pending.Conference Handout
Joan Crawford’s [ Liverpool Hope University] study of nurse’s attitudes towards people with ME/CFS compared to two other long term chronic illnesses, Multiple Sclerosis and Rheumatoid Arthritis. The study showed that nurses in the UK have a lower overall positive attitude towards patients with a diagnosis of ME/CFS compared with their attitude towards MS and RA patients. ME/CFS, MS and RA have been shown, in the literature, to have comparable levels of physical and social disability. I have to say this study saddened me, but also showed the need for better and up to date ME/CFS education of health workers.Conference Handout
The next four speakers, Dr Jo Nijs [Department of Human Physiology, Vrije University Brussel, Belgium], Prof Myra Nimmo/Mark Robinson [Department of Applied Physiology, University of Strathclyde, Glasgow], Dr Lorna Paul/ Rebecca Marshall [School of Health and Social Care, Glasgow Caledonian University], and Dr L Wood [Department of Physiology, Glasgow Caledonian university], all talked on different studies of pain and exercise in ME/CFS patients from a physiological approach. Basically ME/CFS patients exercise they suffer pain, the question posed is, Is it real pain, or signals to the nervous system being read wrong, or not turned off. Also what causes the fatigue? Their results posed more questions than answers I am sorry to say. This is an area of study I was not very familiar with, and certainly is a different direction of approach, which cannot be a bad thing, in creating the ‘larger picture’.Conference Handout
Professor Nancy Kilmas [University of Miami School of Medicine, Florida USA] spoke on the immunology of ME/CFS. What an animated speaker, she woke up the room with her knowledge, experience, and yes her excitement at how far the last five years of biomedical research has taken us. She talked about immunlogical differences found in ME/CFS patients, also how enter viruses have been found present in 13% of ME/CFS samples [2003], Dr J Chia [LA] also found this [2006]. Dr Lerner also found virus in cardiac muscle.
Her biggest message; Severity at initial infection is the single best indicator of outcome.
Also do read her 9 myths of ME/CFS in her Conference Handout
The last speaker of the day was Dr Eleanor Stein [ Calgary, Canada] talking on Behavioural Interventions in ME/CFS, she is a private practice psychiatrist, who has seen many ME/CFS patients. I thought Oh No Not a Psychiatrist, but she gave an objective talk on the use of Cognitive Behavioural Therapy and Graded Exercise Therapy over the years and how CBT has now changed into more about chronic illness management, though this has been useful for some, not for the majority. She talked about the need for research based, integrated appropriate medical intervention and education and respectful psychological and social support.
I had some argument with her saying treatment should depend upon individual bio psychosocial assessment.
I did have some sympathy with her frustration with the Canadian Government who so far has not given any money for biomedical research.Conference Handout
The discussion period was lead by Dr Vance Spence, who also closed the day. I have to say a lot of discussion went on during the coffee and lunch breaks, giving everyone a chance to mingle with the speakers and each other.
I left the conference tired[what’s new!] but with an optimism of what future research will do and bring to the table for ME/CFS patients, their families and physicians.
Also, you can download a copy of this report.
Thanks again to ME Clwyd support group for supporting my attendance. I hope you find my report, interesting and useful.
Any questions please contact me.
