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eakthroughNews of the ME research YOU are helping to fundNew MRI investigationsof the autonomicnervous systemISSUE 9SPRING 2009www.meresearch.org.uk

BreakthroughBreakthrough magazine is published twice ayear and is available free of charge.To subscribe, contact:ME Research UKThe Gateway, North Methven StreetPerth PH1 5PP, UKTel: +44 (0)1738 451234E-mail: meruk@pkavs.org.ukWeb: www.meresearch.org.ukWe encourage your comments andsuggestions for future articles.Chair of Editorial Board: Dr Neil AbbotEditor and Design: Dr David NewtonPublisher: ME Research UKME Research UK funds research into MyalgicEncephalomyelitis/Chronic Fatigue Syndrome(also known as ME/CFS). It has aninternational remit, and its principal aim is tocommission and fund high-quality scientific(biomedical) investigation into the causes,consequences and treatment of ME/CFS. Italso aims to ‘energise ME research’ byidentifying potentially important areas forfuture biomedical research, producing highqualityprofessional reviews and reports,presenting research at meetings andconferences, and hosting internationalconferences.This is an open access publication and,with the exception of images andillustrations, the content may, unlessotherwise stated, be reproduced free ofcharge in any format or medium, subject tothe following constraints: content must bereproduced accurately; content must not beused in a misleading context; ME ResearchUK must be attributed as the original authorand the title of the document specified in theattribution. The views and opinionsexpressed by writers within Breakthroughdo not necessarily reflect those of MEResearch UK or the Editor. No responsibilityis assumed by the publisher for any injuryand/or damage to persons or property as amatter of products liability, negligence orotherwise, or from any use or operation ofany methods, products, instructions or ideascontained in the material herein.First published by ME Research UK, 2009© ME Research UKEditorialDespite its popular perception as ‘YuppieFlu’, ME/CFS is a serious, often disabling,chronic illness, causing impaired mobilityand disability in the majority of cases.Published research has demonstratedthat the quality of life of patients can beseriously disrupted — more impairedthan in MS, according to one Australianreport — and the social consequences, asregards schooling, employment,relationships, financial security, futureplans and personal worth can be severe;one estimate puts the cost of ME/CFS interms of treatments, lost taxes andbenefit payments at £3.4 billion per yearin the UK.In 2002, a report to the Chief MedicalOfficer of England said that ME/CFS was‘a genuine illness and imposes asubstantial burden on the health of theUK population. Improvement of healthand social care for people affected by thecondition is an urgent challenge.’Unfortunately, seven years on from theCMO’s report, little has changed forpatients on the ground; the conditioncontinues to be shrouded in mystery andmetaphor, and remains invisible to allexcept the immediate family, largelyunnoticed by health care professionals.Most importantly, the illness is alsoignored by the biomedical researchcommunity. Despite the seriousness andextent of the condition, comparativelylittle serious biomedical research hasbeen conducted or is presently beingundertaken anywhere in the world.Given the extent of the problem —the recent NICE guideline gives a meanprevalence of 193,000 people with ME/CFS in the UK alone — this situation isbizarre, not to say tragic, particularly assome studies have already uncoveredbiological anomalies that might well helpto explain many of the clinical featuresassociated with the illness and indicateareas for therapeutic intervention (thefindings of increased oxidative stress andneutrophil apoptosis at the University ofDundee, and dysfunction of theautonomic nervous system at theUniversity of Newcastle are twoexamples).Something that concerns me is theproblem that exists at a funding level.Biomedical research is expensive: onemedium-sized clinical trial can cost£300,000, while a major programme ofresearch can last 5 years and cost £1 to 2million. The ideal scenario would be forcentral (e.g., MRC and NHS R&D)funding of biomedical research to beprovided through ring-fencing, making iteasier to entice good establishedbiomedical researchers into the field —so that a ‘critical mass’ of investigatorscould be encouraged to produce the‘critical mass’ of biomedical datanecessary to set the field alight. But thisalone is not the answer. Experience hasconvinced me that the funding strategyfor ME/CFS must mirror that of otherillnesses which obtain most of theirresearch revenue from private sourcesand ground-level fundraising. It is a hugetask, but one that ME Research UK isdetermined to pursue.Dr Vance SpenceChairman of ME Research UK2 | SPRING 2009 | BREAKTHROUGH WWW.MERESEARCH.ORG.UK

this issueCover feature...................................................4–5New MRI studies in Newcastle looking at autonomic nervous dysfunctionThe NICE Clinical Guideline..........................6–7Dr Neil Abbot’s commentary on the evidence baseWorking towards a breakthrough..................8–9A summary of research funded by ME Research UKRecent research...........................................10–13Studies from around the world, including work looking at vitamin D,mitochondrial dysfunction and nursing attitudes to ME/CFSFriends of ME Research UK........................14–15Some recent and upcoming fundraising activities, including marathons,weddings, bicycle expeditions and an arts festivalHow to help ME Research UK..........................16Please complete our standing order form to help support the work of MEResearch UKMERUK@PKAVS.ORG.UK BREAKTHROUGH | SPRING 2009 | 3

Autonomic nervous systemdysfunction: a new2-year investigationThe autonomic nervous systemcontrols cardiovascular,digestive and respiratoryfunctions, and has a range ofother important roles. Whenit goes wrong, theconsequences can be severe. One of thekey difficulties faced by ME/CFS patientsis standing, especially standing stillwithout experiencing symptoms such asdizziness, altered vision, nausea, fatigue,etc. The possibility therefore exists thatthere could be a problem with theautonomic nervous system in thecondition.Professor Julia Newton (picturedbelow, between nurses Katharine Wiltonand Jessie Pairman) of the School ofClinical Medical Sciences, University ofNewcastle, received a grant from MEResearch UK and the regional ClinicalService in 2007 to examine a large groupof patients using a battery of tests ofheart rate and blood pressure. TheCardiovascular Laboratory in which thetests were done is one of the largestautonomic testing labs in Europe, with allthe necessary equipment and expertisefor comprehensive autonomic testing.Professor Newton’s results — published in theQuarterly Journal of Medicine (August 2007) —showed that autonomic dysfunction was present inthree-quarters of the patients studied, a veryunexpected finding. Furthermore, in a separate study(see the opposite page), she has reported that a simpleto-measureassessment of the heart rate response tostanding was abnormal in a significant proportion ofpatients.ME Research UK, the John Richardson ResearchGroup and the Irish ME Trust have provided fundingfor the next phase of the work: a two-year projectexploring some of the mechanisms behind theseautonomic problems in ME/CFS patients. Theinvestigation has two broad aims. The first is toexamine fully those individuals attending the NewcastleCFS/ME Clinical Service, and develop a database ofpatients who can be followed up over the long-term.The second aim is to begin to answer the followingquestion: ‘Does the autonomic dysfunction in peoplewith ME/CFS arise in association with abnormalities ofthe brain, muscle and liver, as has already been shownin patients with other illnesses?’For this investigation, a series of linked studies willexamine muscle bioenergetics, and structural andfunctional abnormalities of the brain and liver. Theseinvestigations will use state-of-the-art magneticresonance techniques, including assessment of liverfibrosis and percentage fat. •4 | SPRING 2009 | BREAKTHROUGH WWW.MERESEARCH.ORG.UK

Graph ofmaximum heart rate(in beats per minute)after standing,showing the differencebetween ME/CFSpatients andmatched controlsPrevious studies:what did theresults show?The most recent scientific paper(Quarterly Journal of Medicine,December 2008) from ProfessorNewton’s group at the University ofNewcastle described the prevalenceof one simple-to-measure aspect ofautonomic dysfunction, namelypostural orthostatic tachycardiasyndrome (POTS), in a group ofpatients recruited via the specialistCFS/ME service in Newcastle.POTS is defined as symptoms oforthostatic intolerance associatedwith an increase in heart rate onmoving from lying to standing.Importantly, the major finding wasthat significant POTS could bemeasured in a high proportion (27%)of the patients but in only 9% ofhealthy control subjects. Moreover,the POTS observed in the ME/CFSgroup was characterised mainly by anincrease in heart rate to more than120 beats per minute on standing (seethe graph above). This increase in heartrate was significantly associated withincreasing fatigue.The central finding is important:POTS is a frequent finding in patientsattending the clinic, suggesting that theclinical evaluation of patients presentingwith ME/CFS should include heart rateresponses to standing, an obvious andeasily measurable clinical sign.It remains unclear, however, whetherthe observed POTS should be viewed asa clinical entity distinct from ME/CFS, orwhether patients with POTS represent aparticular subset of ME/CFS patients withthe most marked symptoms.Whatever the case, the authorsremark that the diagnosis of POTS (apotentially treatable condition) maycurrently be missed in ME/CFS patientsattending clinical services. And theysuggest that, at the very least, ahaemodynamic assessment of theresponse to standing should be includedin the clinical assessment of patientsattending ME/CFS clinical services.POTS is the most common form oforthostatic intolerance withoutorthostatic hypotension, and can producesubstantial disability among otherwisehealthy people. One large series ofpatients with POTS reported thesymptom burden to be significant andto include weakness, and muscleaches and pains. Its findings alsosuggested a neuropathic basis for atleast half the cases of POTS, and anautoimmune component for asubstantial percentage of cases.Other studies have shown POTSto be accompanied by a range ofautonomic nervous systemabnormalities, including vagalwithdrawal and enhanced sympatheticmodulation, and that it can beassociated with findings consistentwith pooling in the lower limbs,similar to pathophysiologicalmechanisms occurring in a proportionof people diagnosed with ME/CFS.Given these associations, it isimportant that POTS be recognisedand managed, whether in ME/CFS orin other groups of patients. ProfessorNewton’s findings suggest thatcurrent treatment regimes (which caninclude a range of pharmacologicaland non-pharmacological strategies)for the management of orthostatichypotension and POTS should beincorporated into ME/CFSmanagement programs.MERUK@PKAVS.ORG.UK BREAKTHROUGH | SPRING 2009 | 5

The NICE Clinical Guideline:convincing evidence?For the Judicial Review of the NICE Guidelineon CFS/ME on the 11th and 12th ofFebruary 2009, at the High Court in London,Dr Neil Abbot provided an Expert Witnessstatement on the evidence baseunderpinning the main ‘treatment’recommendations. In this article, hesummarises his conclusions, mainly withreference to cognitive behavioural therapy(CBT), though many points also apply tograded exercise therapy (GET).The National Institute forClinical Excellence (NICE) isrightly respected for basing itstreatment recommendationson evidence. In the case of theillness ME/CFS, its principalrecommendations were cognitivebehaviouralapproaches for the specialistmanagement of the illness because‘currently these are the interventions forwhich there is the clearest researchevidence of benefit’.However, cognitive-behaviouralapproaches are widely recognised,6 | SPRING 2009 | BREAKTHROUGHincluding by the NICE Guideline itself(section 6.3.8, page 252), to be noncurativefor ME/CFS; and in otherphysical illnesses these approaches areused as adjuncts to but not substitutesfor mainstream treatment. So, what wasthe evidence base for the central role ofthese approaches in the clinicalmanagement of the illness?The table opposite shows that theevidence base for these cognitivebehaviouralapproaches consists of asmall group of randomised controlledtrials on adults (ten trials in all; sevenwith mild-to-moderately positive resultsand three with negative results). Focusingin on CBT (a form of psychotherapy usedto treat a variety of psychologicalimpairments), the first thing to note isthat two out of five trials have a negativeoverall result (Whitehead, 2002; Lloyd,1993). The remaining three trials haveoverall positive effects, and moreoverhave high ‘validity scores’, indicating thatthey are likely to have been well-designedand conducted. Nevertheless, the ‘goldConsider referral to specialist CFS/ME care• Offer referral:– within 6 months of presentation to people with mild CFS/ME– within 3–4 months of presentation to people with moderateCFS/ME symptoms• Make any decision to refer jointly with the person, dependingon their symptoms and any comorbidities• Continue primary care involvement after referralSpecialist CFS/ME care (see pages 17–20)From: NICE Clinical Guideline 53;Presentation, Diagnosis and Pathway of Carestandard’ evidence-base consisted ofthree mild-to-moderately positiverandomised controlled trials only. It isinstructive to compare this with theevidence base available for NICEGuideline 8 on multiple sclerosis, withmany hundreds of trials.Other key points to note are thefollowing:Patient numbersThe trials of CBT have relatively smallnumbers of patients; in four of the trials,analysis was performed on no more than30 patients in the CBT groups, while thelargest trial (Prins, 2001) analysed 92patients in the CBT arm. Since only twoof the trials (Deale, 1997; Prins, 2001)reported making a power calculation todetermine the adequacy of sample size todetermine a treatment effect, it is entirelypossible that some samples were toosmall to determine a true effect.Different kinds andduration of treatmentThere is a difference between trials in thetype and content of CBT delivered, aswell as in the number, frequency andlength of intervention sessions given. Thismakes it impossible to say that like wasbeing compared with like as far as typeand delivery of ‘treatment’ wasconcerned.Diagnostic definitionsCase definitions of CFS differ, raising thequestion of whether homogeneousgroups of patients are being comparedbetween trials. Two of the positive trialsrecruited patients using the Oxfordcriteria (1991) which focuses onunexplained chronic fatigue and does notrequire additional symptoms. Given thatthe NICE Guideline itself recommendsthat post-exertional malaise and othersymptoms such as cognitive difficulties,WWW.MERESEARCH.ORG.UK

Working towardsa breakthroughDr Gwen KennedyThe primary aim of ME Research UK isto fund biomedical research into ME/CFS,to find its cause, to develop effectivetreatments and ultimately to discover acure.We fund the work of a growingnumber of scientists in the UK andworldwide, whose research coversseveral different areas of interest. Ourpriority is to support innovative clinicaland biomedical studies, based inestablished research institutions with asuccessful scientific track record.All grants are competitive, subject topeer review, and rigorously assessedbefore award and after completion.To date, we have invested over half amillion pounds to support biomedicalresearch, and are particularly grateful tosome of the ME organisations which haveprovided larger donations to help us fundspecific projects, some of which areshown below. Full details of these andother projects, including the resultingscientific papers, can be found on ourwebsite: www.meresearch.org.uk.Evaluation of pain and therapeutic interventionsDr Lorna Paul, School of Health and Social Care, Glasgow Caledonian UniversityDr Jo NijsAutonomic nervous system dysfunction — a clinical studyProf. Julia Newton, School of Clinical Medical Sciences, University of Newcastle(with co-funding from the Irish ME Trust and the John Richardson Research Group)The effect of exercise on the immune and sensory systemsDr Jo Nijs, Dept of Human Physiology, Vrije Universiteit Brussel, Brussels, BelgiumNon-invasive neuroimaging of the brainProf. BK Puri, MRC Clinical Sciences Centre, Imperial College London(with ME Solutions and the MRC Clinical Sciences Centre, Imperial College)Plasma vitamin D status in ME/CFSDr Faisel Khan, Institute of Cardiovascular Research, University of DundeeInterleukin-6 and its receptorsProf. Myra Nimmo, Dept of Applied Physiology, University of Strathclyde, GlasgowProf. Julia NewtonBiochemical and blood flow aspects of ME/CFS in childrenDr Gwen Kennedy, Institute of Cardiovascular Research, University of Dundee(with co-funding from The Young ME Sufferers (TYMES) Trust and Search ME)Gene expression studiesDr Jonathan Kerr, St George’s Hospital, University of London(with co-funding from the Irish ME Trust)Exercise tolerance and post-exertional symptomsProf. Brian MacIntosh and Dr Eleanor Stein, University of Calgary, Alberta, CanadaChronic inflammation and apoptosisProf. Jill Belch, Institute of Cardiovascular Research, University of DundeeCharacterisation of differential gene expressionProf. J Gow, University Department of Neurology, GlasgowDr Faisel KhanElucidating novel mechanisms of fatigue in ME/CFSDr P Ansley, Northumbria University, Newcastle upon Tyne8 | SPRING 2009 | BREAKTHROUGHWWW.MERESEARCH.ORG.UK

The funding challengeMoney is the platform which supports all biomedical research. But it is expensive:one clinical trial can cost half a million pounds, while a major program of researchcan last for years and cost 2 million pounds or more. So, unravelling the causes andfinding cures for ME/CFS will require big money over a long time.When people think of medical research funding in developed countries theythink of ‘Class 1’ funders, such as the MRC in Britain or the NIH in the UnitedStates. But the money available from these central sources does not go far giventhe many demands, and even if ME/CFS got its ‘fair share’ of Class 1 funding, thatshare would fund only a small part of the biomedical activity that is necessary.In fact, a significant proportion of research funding for many, if not all, illnessescomes from charitable sources: the Association of Medical Research Charitiesestimates that some £791 million was spent on projects in 2006/7 by its members.And the annual income of Cancer Research UK alone in the same period was £468million — an instructive comparison figure for ME Research UK’s grant spend ofhalf a million pounds in its entire lifetime.Much of the income for research into cancer and other illnesses comes directlyor indirectly from public donations. We have to do the same for ME/CFS. As mostpatients are too ill to fundraise themselves, our strategy has to be to raiseawareness of the need for biomedical research into the illness, ensure that ourorganisations are worthy of the trust and support of patients, carers andfundraisers, and get and keep the research community on-side for the long march.Some recent publications from funded projectsPhysiological cost of walking in those with CFS. Disability and Rehabilitation 2009; in pressPostural orthostatic tachycardia syndrome is an under-recognized condition in CFS.Quarterly Journal of Medicine 2008; 101(12): 961–5Low grade inflammation and arterial wave reflection in patients with CFS. Clinical Science 2008; 114: 561–6Symptoms of autonomic dysfunction in CFS. Quarterly Journal of Medicine 2007; 100: 519–26Is CFS a hypercoaguable state associated with platelet activation? Blood Coagulation and Fibrinolysis 2006; 17: 89–92Chronic fatigue syndrome. Lancet 2006; 367: 1574–5Oxidative stress levels are raised in CFS and are associated with clinical symptoms.Free Radical Biology and Medicine 2005; 39: 584–9Standing up for ME: Cardiovascular mechanisms of orthostatic intolerance. The Biologist 2004; 51: 65–70Acetylcholine mediated vasodilatation in the microcirculation of patients with CFS.Prostaglandins, Leukotrienes and Essential Fatty Acids 2004; 70: 403–7Increased neutrophil apoptosis in CFS. Journal of Clinical Pathology 2004; 57: 891–3Plasma endothelin-1 levels in CFS. Rheumatology 2004; 43: 252–3The specificity of the CDC-1994 criteria for chronic fatigue syndrome: comparison of health status in three groups ofpatients. Annals of Epidemiology 2004; 14: 95–100Neurophysiologic analysis of neuromuscular symptoms in UK GW veterans. Neurology 2003; 61: 1827Prolonged acetylcholine-induced vasodilatation in the peripheral microcirculation of patients with CFS.Clinical Physiology and Functional Imaging 2003; 23: 282–5MERUK@PKAVS.ORG.UK BREAKTHROUGH | SPRING 2009 | 9

SPAIN & UKMitochondrialmalfunction?The mitochondria are small organelles(or subunits) found in most animal andplant cells. They are often described asthe power plants of the cell because theirmain job is to generate chemical energy,although they also have other roles insignalling and cell growth.Mitochondrial dysfunction seems tobe implicated in a number of diseases,including mental disorders and heartproblems, as well as being involved in theageing process. Since ME/CFS ischaracterised by a profound, generalisedpost-exertional loss of muscle power, itseems reasonable to suggest thatmitochondrial dysfunction may beinvolved. Indeed, over the years, therehave been diverse smaller investigationsexploring this aspect, ranging from thefirst study by Byrne et al (1985) to thefollowing two recent investigations.A Spanish study (Dolor, 2008)explored mitochondrial function in 15patients, from the CIMA clinic inBarcelona, diagnosed with idiopathicchronic fatigue (but not with the full ME/CFS symptom complex). The researcherstook medical and family histories to lookfor signs of mitochondrial impairment,conducted an exercise stress test, andperformed an open muscle biopsy fromwhich a sample was obtained for electronmicroscopy.The number of mitochondria wasincreased in 60% of patients, andmitochondrial function was abnormal in asimilar number. In one third of patients,these abnormalities correlated withhearing loss, and with headache in theirmothers (mitochondrial genes are passedon from mother to child).While this study was relatively small(and had no matched control group forcomparison), it does provide a glimpse ofthe kind of intriguing findings that couldbe uncovered from a battery of validatedmitochondrial tests from a larger sampleof patients and their extended families.In another recent study from the UK(International Journal of Clinical andExperimental Medicine, 2009), 71 CDCdefinedCFS patients provided bloodsamples from which mitochondrialfunction was assessed using an ATPprofile test on white blood cells.The major finding was a correlationbetween the degree of mitochondrialdysfunction and the severity of illness asassessed by a simple 10-step ability scale.However, we cannot say whether thiscorrelation is meaningful clinically sincesimple correlations are notoriously opento confounder bias (in which otherunidentified factors might be behind therelationship). Nor do we know if theresults are specific to ME/CFS, sincecomparison mitochondrial function datafrom other chronic illnesses (such asneuromuscular disorders and frankmitochondrial myopathies) is notpresented.A further complication is that thestudy used neutrophils, phagocytic cellsof short life-span, which do notsynthesise much ATP and are rarely usedfor mitochondrial research (which tendsto use cells from high energy tissues suchas muscle). Nevertheless, the results areintriguing and provide grounds forinvestigation of mitochondria in ME/CFS.It is now almost 25 years since thefirst study of the modern ME/CFS erareported some aspect of mitochondrialphysiology or function. Since then, apatchy and sometimes contradictorypicture has emerged from the relativelysmall number of scientific investigationsconducted. Yet, there remains a sensethat not all is well with mitochondria inME/CFS patients, and that the time is ripefor well-planned hypothesis-drivenmitochondrial studies on wellcharacterisedpatients, using properlyvalidated techniques and outcomemeasures.JAPANSplit nailsIn 2006, a research group from OsakaUniversity reported a putative diagnostictest for ME/CFS using visible and nearinfraredspectroscopy of a blood sample.Now, the same group has just publishedanother report (Clinica Chimica Acta,2009) investigating structural changes ofproteins in patients’ fingernails. Theresearchers collected a sample from thenail plate of the free edge of the fingernailtip in 65 ME/CFS patients and 41 controlsubjects.Even allowing for the influence of sexand medications (which can affect nails),ME/CFS nail plates had a secondarystructural change of proteins (decreasedα-helix content and increased β-sheetcontent) compared with healthy nailplates. Since the α-helix is supposed tocontribute to the stabilisation of theprotein structure, a decrease of α-helixmay cause instability of proteins in nails.Like the authors, we have no way oftelling if this observation might becomediagnostic, or if it has any clinical meaningor any specific relevance for ME/CFSpatients at all. To find out, we have a nailbitingwait ahead.MERUK@PKAVS.ORG.UK BREAKTHROUGH | SPRING 2009 | 11

As the authors explain, the challengefaced by the immune system of aninfected person is to respond withsufficient intensity and duration tocontrol or eliminate the infectingpathogen, while minimising immuneinjuries. People whose genetic makeupfavours a more intense inflammatoryreaction (at the start) are likely toexperience more severe symptoms ofinfectious disease and a more protractedillness. The challenge for medical scienceis to identify these individuals early, andhave a treatment plan prepared.HOLLANDLifestyle factorsLifestyle factors are important riskfactors for several diseases, such ascancer, heart disease and diabetes, but isthis also true for ME/CFS? Well,academics at the Radboud UniversityNijmegen Medical Centre (Journal ofHuman Nutrition and Dietetics, 2009)explored the issue by collecting datafrom 247 ME/CFS patients on lifestylefactors, smoking, intake of alcohol, fat,fibres, fruit and vegetables, body massindex (BMI), fatigue severity, andfunctional impairments.Of the patient sample, 23% smoked,32% had a BMI greater than 25 (i.e.,overweight or obese), and none had analcohol intake that could be classed asunhealthy. In fact, 27% of ME/CFSpatients abstained from alcoholaltogether, compared with around 14% ofthe general Dutch population, confirmingan earlier study from 2004 and patients’own reports of alcohol intolerance.Only 5% had a healthy fibre intake andapproximately 70% had an ‘unhealthy’lifestyle with respect to fat, fruit andvegetable intake, though the eating habitsof the general Dutch population alsoreveal a similar ‘unhealthy’ pattern, andoverall the researchers found thatpatients tended to lead a healthierlifestyle than the general Dutchpopulation.But were there differences betweenpatients with healthy and unhealthylifestyles as regards fatigue severity orimpairment of function? No, although adefinitive answer would require a fullpopulation-based epidemiological study.AUSTRALIAInfections andtheir consequencesME/CFS cases are commonly triggered bya viral infection, and the burning questionis why, in some people, an initial infectionpersists — with serious consequencesthat can last a lifetime — while otherpeople swiftly recover their health.The Dubbo Infection Outcomes StudyGroup in Australia has followed 300people with acute infection with Epstein-Barr virus, Q fever or Ross River virus,from the time of symptom onset untiltheir recovery.The Group’s most recent report(published in Clinical Infectious Diseases2008) shows that individual differences ingenes that have critical roles in theimmune response to infection —cytokine genes — have a key role insubsequent differences in the severity ofillness, as well as its outcome over thelonger term. Specifically, the type ofinterferon-gamma and interleukin-10genes carried by the infected personwere important.HISTORY CORNEREnterovirusesTime marches on, they say, butsometimes it can seem to move veryslowly, at least where research into ME/CFS is concerned! In 1994, a scientificletter (McGarry et al, Annals of InternalMedicine) reported the postmortemfindings on a 30-year-old woman withME/CFS who died of other causes.Because a flu-like illness was sometimesinvolved in ME/CFS and becausecircumstantial evidence implicatedenteroviruses, the authors from theSouthern General Hospital, Glasgow, hadexamined her central nervous system forthe presence of enterovirus usingpolymerase chain reaction (PCR) analysis.Control samples were obtained fromfour patients who died ofcerebrovascular diseases and from fourdeceased age and sex-matched patients.While no enteroviral sequences weredetected in any of the control tissues,positive PCR sequences were detected inmuscle, heart and brain samples from thehypothalamus and brain stem region ofthe patient. Sequence analyses revealedan enterovirus with an 83% similarity toCoxsackievirus B3.From this, the authors concluded thatenterovirus infection (and hypothalamicdysfunction) could be involved in thedevelopment of ME/CFS, and that thepersistent symptoms might be a result ofthe persistence of enterovirus inparticular parts of the central nervoussystem.The same authors subsequentlypublished a larger study in which musclebiopsy samples were positive for12 | SPRING 2009 | BREAKTHROUGH WWW.MERESEARCH.ORG.UK

enterovirus in approximately 25% of 121ME/CFS patients, and in approximately20% of those with other neuromusculardisorders.Postmortem investigations have amedico-scientific role, particularly if theirisolated results can be conjoined withsubsequent findings such as the highprevalence of stomach enterovirus in ME/CFS patients reported by Dr Chia inCalifornia in 2008.For that reason, the current plans toestablish a tissue bank for ME/CFS patientsamples, acting as a central repository forspecific neuromuscular tissues afterdeath, should be supported andexpedited.BELGIUMA load of baloney?Since around 1990, when the term‘Chronic Fatigue Syndrome’ came intovogue, there have been a goodly numberof investigations on the role of‘personality’ in the development andmaintenance of the illness, with somereports claiming rates of personalitydisorders as high as 40% among patients.Some of these claimed personalitydisorders go under exotic names such asalexithymia (emotional deficiency), actionproneness, learned helplessness andhistrionic states. However, it turns outthat these claims may have been a load ofbaloney all along.Belgian investigators (Journal ofPsychosomatic Research, 2009) have nowevaluated the prevalence of ‘DSM-IV-TRpersonality disorders’ in a sample of 50women with ME/CFS and, importantly, intwo control samples (closely matched tothe patients for gender, age, educationallevel, family structure and marital state)of 50 healthy Flemish civilians and 50psychiatric patients.The results showed a strikingsimilarity between the ME/CFS sampleand the Flemish healthy control group onvarious measures, including theprevalence rates of personality disorderdiagnoses. In fact, the prevalence of anAxis II disorder (defined as ‘underlyingpervasive or personality conditions, aswell as mental retardation’) was 12% inboth the healthy Flemish and ME/CFSgroups, compared with 54% in thepsychiatric sample, leading theresearchers to conclude that ‘personalitypathology’ has no major role to play inME/CFS.To the healthcare professionals whosee ME/CFS as an illness existing withinan ‘extended multifactorial framework inwhich personality disorders play anessential role’, these results must comeas a profound shock. Still, facts must befaced and, as the Belgian authorsthemselves say, ‘The results of thepresent study are unambiguous andstraightforward.’UKNursing mirrorThe NICE Guideline of 2007 acceptedthat most patients with ME/CFS would bemanaged in primary care, a setting inwhich Practice Nurses are acquiring agreater role. A recent investigation fromthe School of Community-BasedMedicine, University of Manchester (BMCNursing, 2009) aimed to discover thecurrent level of knowledge andunderstanding of the condition of 29Practice Nurses using semi-structuredinterviews.Qualitative studies like this do notrate highly in the hierarchy of researchevidence, yet they can be very revealingindeed, as the results show. There wasconsiderable ignorance about and limitedexperience of the clinical features of theillness, its aetiology and appropriatemanagement strategies. And some of thenurses’ comments would make a crowblush. For instance, ‘I know so little youcould write it on a postage stamp’; ‘notime paid to it whatsoever, brushedover’; ‘I think the money could be betterspent’. So the authors correctly recognisethat training must begin by addressingsome current negative attitudes topatients with ME/CFS.However, in most there was anopenness to training, and a willingness toget to grips with issues, particularly inorder to help patients. Interestingly, thePractice Nurses who were mostinformed had gained their understandingabout ME/CFS through contact withpatients, friends and personalexperiences, rather than any formaltraining. This is something we allrecognise: that understanding andsympathy are kindled (and the desire tohelp awakened) when there is a personalconnection, such as the severe illness offamily member.MERUK@PKAVS.ORG.UK BREAKTHROUGH | SPRING 2009 | 13

Friends of ME Research UKEvents coming upRecenteventsNorthern IrelandCampaignDerek and Grainne Peters (picturedabove), who have been great friends ofthe drive for ME/CFS biomedical researchfor many years, have kindly given us apersonal donation of £3,000, in additionto the recent £2,000 contribution fromthe Northern Ireland Campaign for ME/CFS Healthcare, the very activecampaigning organisation of which Derekis the director and founder.As Derek says, ‘As I have sufferedfrom ME for 25 years, and we’ve beenactive campaigners for improveddiagnosis, treatment and medical/socialsupport for much of that time, Grainneand I feel it vital to contribute towardsME Research UK’s work.’Wedding BellsSally Mason is marrying Owen Magrathon 27th June 2009, and is asking friendsand guests to donate to our researchprogramme so we can benefit from theircelebration.Sally has had ME for over three years.Her illness came on suddenly over twodays with flu-like symptoms, and frombeing a 100% fit 26-year-old, full ofenergy and working hard, within twodays she could hardly walk.Despite having severe symptoms suchas extreme exhaustion and headaches,Sally considers herself one of the luckyones, and has improved slowly since 2005through a combination of good medicaladvice, luck and determination.Sally and Owen’s Justgiving pages arestill open to receive online weddingdonations, and we all hope they have awonderful day on 27th June.Lands End toJohn O’GroatsRachel Bennett cycled from Lands End toJohn O’Groats — a distance of 874 miles,the greatest distance between any twopoints in mainland UK — to raise moneyfor our charity in 2008.Rachel (pictured below) was part of alarger group of cyclists, all raising moneyfor their favourite charities, and whenher online donations via the Justgivingwebsite were included, the total hadamassed almost £3,300!It was quite a trip, and the mid-waypoint was reached at Windermere wherea sign marks the mid-point (437 miles togo either way). At her final destination,there was a mound near the JohnO’Groats Hotel which marked the sitewhere Dutchman John De Grootconstructed his eight-door octagonalhouse in the early 16th century, running aferry to Orkney charging 4d, a sum thatbecame known as a Groat.Congratulations, Rachel, for reachingthat spot, and thank you for doing it onour behalf.14 | SPRING 2009 | BREAKTHROUGH WWW.MERESEARCH.ORG.UK

AnniversaryFestivalThe annual Aberdour Festival is ten daysof celebrations, with arts, crafts, song,dance, puppetry, sports and so muchmore, and the 25th Anniversary Festivalwas a landmark event. The organisers hadcreated a broadly appealing programmeof events, including the popular ceilidhband Callanish.For classical music lovers, they ran aseries of three concerts by youngmusicians from ‘Live Music Now’.Favourite events such as the artsweekend were still included, along withmany new acts in the halls and hotels inAberdour, including John Cairneyreturning to his favourite Fife village for‘My Scotland Story’.The week-long, action-packed seriesof events for all ages included the RaftRace, Donkey Brae 7 and 2-mile runs,and the village market.The photo above shows Moira Robband her husband Mike, who hosted oneof the arts and crafts venues, presenting acheque for £300 raised at the event toour Chairman Dr Vance Spence at ourheadquarters in the autumn of 2008.Charity Bike RideChris Wilkinson took part in the annualcharity bike ride from Manchester toBlackpool (and home to Skelmersdale, atotal of 100 miles), the second bike ridehe has done for our charity. The ridestarted at Albert Square in Manchesterand continued along country lanesthrough Leigh, Haigh Hall, Preston, Inskip,ending at the Mirror Ball at the SouthPromenade in Blackpool where ridersand friends could enjoy a barbecue, beertentand live music. Indeed, some evenpartook of a well-earned massagethoughtfully provided by volunteers!The photograph below shows Chris,resplendent in ME Research UK t-shirt,and many thanks to Chris and the familyfor again taking on this challenge!Marathon HeroesAs a fundraising event, there is nomarathon in the world that comes closeto the Flora London Marathon. One ofthe dominant images of the race is that ofthousands clad in fancy dress, trampingthe cobbles in support of charitablecauses, dressed as rhinos, football teammascots, giant trees and the like.In 2008, 34,420 runners had crossedthe finish in The Mall, and three of themwere running for ME Research UK. Ourwarmest congratulations go to RobertOgden and Madhi Choudhury, and IanBottomley who coursed home within 13minutes of each other, around the 4-hourmark — a tremendous achievement —jointly raising almost £4,000.We already have two LondonMarathon runners supporting us in the2009 event — Harvey Gurry andMatthew Fielding (pictured below) —whose online Justgiving pages are alreadyfilling up.The lads are in training for the bigday, and Matthew is up to 14 miles persession (including a broken thumb). Goodluck, gentlemen.MERUK@PKAVS.ORG.UK BREAKTHROUGH | SPRING 2009 | 15

Standing Order FormNameAddress__________________________________________________________________________________________________________To allow us to press ahead withour mission to Energise MEResearch, please considerresponding to our Standing Orderappeal.PostcodeTelephoneE-mail address____________________________________________________________________________________________________________________________________________________________________________________________________________________ME Research UK receives nopublic money and relies entirelyon donations from ordinarypeople. It is vitally important thatall our supporters understand thatwe are one of the very fewcharities in the world fundingbiomedical research into ME/CFS,and raising awareness of the issuesin a truly professional manner.Help us to make the breakthroughthat patients need and deserve bycompleting the standing orderform on this page, or by donatingthrough the online giving facilityvia our website.Please send this form to:ME Research UKThe GatewayNorth Methven StreetPerth PH1 5PP, UKTel: 01738 451234Email: meruk@pkavs.org.ukwww.meresearch.org.uk____________________________For office use only:Clydesdale Bank23 South Methven Street, Perth(82-67-09) for the credit of MEResearch UK, a/c no. 50419466Bank reference number:To the Manager:Bank/Building SocietyBranch addressPostcodeName of account holder(s)Account numberBranch sort code_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________Please arrange to debit my/our account with the sum of £ __________On the _____________ day of each month until further noticeStarting on _______________________________Pay to: Clydesdale Bank, 23 South Methven Street, Perth PH1 5PQ, UKAccount: ME Research UK, Account no: 50419466, Branch code: 82-67-09If you are a UK taxpayer, under the Government’s Gift Aid scheme ME Research UKcan reclaim the tax you have already paid on your gift. This means that your donationcan increase by nearly a third at no extra cost to you. It doesn’t matter what tax rateyou pay as long as you pay an amount of income or capital gains tax equal to the taxwe reclaim on your donations in that financial year. Please inform us of changes in yourtax status. Please indicate below if you would like ME Research UK to reclaim the taxon your gift.Please treat this and any future donations I make to ME Research UK, and allpayments I have made since 6th April 2000, as Gift Aid donations.Signature _______________________________________ Date _____________________________________________Thank you for your support16 | SPRING 2009 | BREAKTHROUGH WWW.MERESEARCH.ORG.UK

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