(The John Richardson Research Group) a personal view by Peter Morton

For the past two years ME North East have been invited as observers to attend one part of this conference. This year the Trustees made a decision to open the conference to a wider group and Jennifer and I were cordially invited to attend the full two day event and also give a presentation. Also attending and giving a personal view on “running a group” was Pauline Donaldson for Sunderland & South Tyneside CFS/ME Support Group.

Background
• The above group was founded by Drs John Richardson, Hewan Dewar and Irving Spurr back in 1993
• Purpose is to promote research into the origin and consequences of viral infections (entero viruses in particular)
• Following the death of Dr John Richardson in 2002 it was decided that the conferences should continue and this year it was decided to rename the Group – ‘The John Richardson Research Group’ – in his honour
• The group attracts many eminent participants from around the world
• Professor Malcolm Hooper has recently become a Trustee of the Charity

Content
Because of the terms of reference not all the presentations and papers are directly ME/CFS related. As a matter of completeness I list all participants and their work but only show detail of papers that had relevance for us.

Jennifer Elliott – ‘DoH Funding – What’s in it for ME?’
• An overview of the shape of Specialist Clinical Services for ME/CFS
• A showing of ME North East CD Documentary ‘All about ME’
Prof Malcolm Hooper – ‘Major Milestones and Case Definition?’
• A great guy and a real stalwart for the case that ME is a physical illness!
• Major concentration was on Gulf War syndrome but as in genuine ME more detailed investigations can show abnormalities (in GWS) like decreased levels of growth hormone, some chromosome damage, increased incidence of osteoporosis and the auto-immune disease, Lupus
• Emphasised the need for a better case definition of ME
• Has identified a potential urine marker (IAG) for ME
Dr Vance Spence – ‘Free Radical Biology in CFS/ME’
• Another great guy and a great researcher looking for physical causes (or at least consequences) of ME
• A free radical is an unstable molecule – normally we get a burst of free radicals when we are ill or when we train/exercise intensely (athletes)
• Vance has shown in a recent paper that ME patients produce excessive oxidation (Isoprostanes) when exercising which may significantly increase our cardiovascular morbidity risk by as much as eight times
• Caution should be advised re exercise as this may prove to be potentially harmful
• Omega 3 oils may be protective
Dr Roz Anderson – ‘Studies Within a Local Group’
• Roz has worked with the Sunderland and S. Tyneside Group and produced and evaluated a member questionnaire
• Sleep problems were a very common problem
• Urine samples taken from all participants and pooled – then examined for metabolite peaks ; there were five but they are yet to be identified (funding needed for the next part of the project)
Dr Betty Dowsett – ‘Pleconaril: Significant news for ME Sufferers’
• I found it hard to get a handle on what Betty expounded but suffice to say that this drug shows promise in the treatment of enteroviral infection/the common cold/meningitis but it is early doors just yet
Dr Byron Hyde – ‘Thyroid Update’
• Byron believes that the ’88 and ’94 definitions of ME/CFS have let patients and practitioners down (5000 words is too detailed! - and yet not specific enough)
• Byron is a Canadian GP equivalent with a specialist interest in ME/CFS – he has been seeing patients for years and is somehow able to have access to many more diagnostic procedures than the average GP here in England/Wales
• Unfortunately he seems to have identified an increased prevalence of thyroid lesions and malignancies within his cohort of ME patients
Dr Sarah Myhill – ‘Treatment of ME and related Illnesses’
• Sarah is a very pragmatic GP and sees ME/CFS patients from across the country
• Identifies ME patients by poor stamina and delayed fatigue (both mental; and physical) = cardinal symptoms
• There were so many aspects to her presentation that I should draw attention to her website: www.drmyhill.co.uk.
- look at ‘fatigue’
• In brief she listens to patients and advises on day-to-day management; corrects micronutrient status; gives high dose magnesium (oral or injection); identifies food allergies/intolerances via elimination diet; advises low carbohydrate/high glycaemic diet; eliminate toxins (sauna, spa therapy); clean up environment; stop the pill/HRT; identify low grade chronic bacteriological infection and treat; reduce burden of xenobiotics i.e some prescription medications, alcohol, anti-depressants, beta blockers, statins and caffeine etc
• In addition possibly treat any low-level thyroid problems; correct any low levels of cortisol/DHEA; give high dose B12 (injections); give high dose vitamin D/essential fatty acids and sometimes L-carinitine can help
Steven Fowler – ‘Research Grants’
• discussion re what to do with the funds in the Newcastle Research Group account – general opinion seemed to be continue with the annual meeting and not to risk the capital on an ongoing research project which might produce very little of significance
Pauline Donaldson – ‘ Running a Group’
• gave patient/group perspective
Other Participants were:
Prof James Mowbray – ‘Is it an Epidemic?’
Dr David Ben-Nathan – ‘Arbovirus – Vaccines’
Prof Roger Loria – ‘Immuno Osteogenesis’

Conclusion
This appears a useful annual get-together – the aim being to exchange viewpoints/opinions/studies which hopefully may influence any future explorations/projects of the individual participants. We welcomed the opportunity to share patient experiences and perceptions and we were made very welcome by all. We look forward to future events.