Breakthrough Autumn 2010

breakthroughNews of the ME research YOU are helping to fund

ISSUE 12AUTUMN 2010

www.meresearch.org.uk

2 • BREAKTHROUGH • Autumn 2010

BreakthroughBreakthrough magazine is published twice a

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Chair of Editorial Board: Dr Neil Abbot

Editor and Design: Dr David Newton

Publisher: ME Research UK

ME Research UK funds research into Myalgic

Encephalomyelitis/Chronic Fatigue Syndrome

(also known as ME/CFS). It has an

international remit, and its principal aim is to

commission and fund high-quality scientific

(biomedical) investigation into the causes,

consequences and treatment of ME/CFS. It

also aims to ‘energise ME research’ by

identifying potentially important areas for

future biomedical research, producing high-

quality professional reviews and reports,

presenting research at meetings and

conferences, and hosting international

conferences.

This is an open access publication and,

with the exception of images and illustrations,

the content may, unless otherwise stated, be

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content must be reproduced accurately;

content must not be used in a misleading

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views and opinions expressed by writers

within Breakthrough do not necessarily

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First published by ME Research UK, 2010

© ME Research UK

And so ME Research UK is 10 years old… A decade might seem a long time, butit is only a twinkle of an eye in the life of acharity. The most perilous years fornewborn charities, so they say, are thefirst five and many fail at this early stage.The ones that survive continue to growslowly, building up a bedrock of supportand increasing in credibility year-on-yearfor 20, 30 or 40 years. That’s why themost successful charities tend to be thelongest established. There’s an old saying that the bestway to realise just how far you’vetravelled is to look back; so how far hasME Research UK come in ten years? Well,in that time the charity has providedfunding for 29 projects, most over thepast 6 years. It’s sobering to think that MEResearch UK, comparatively small asresearch charities go, has funded morespecific research projects on ME/CFS thanany other single organisation in the worldoutside the American continent. Without our impetus or funding(alone or with partners) most of theseprojects would never have taken place.For instance, Prof. Julia Newton’sresearch on autonomic dysfunction at theUniversity of Newcastle would not havebegun and flourished into the much larger

programme we see today (see page 6);and the Vascular and InflammatoryDiseases Research Group at theUniversity of Dundee would not haveuncovered a range of abnormalities inoxidative stress, apoptosis and arterialstiffness (page 8). Similarly, Prof. Nijs’programme in Belgium on exercise,immunology and its consequences; DrJonathan Kerr’s investigations of genesnips or comparative genetic signatures;and single investigations, such as theexplorations of retrovirus in Swedishpatients (page 15) or the experience ofpain in Scottish patients (page 4) wouldnot have been instigated or completed. Yet we have had a wider, morediffuse influence than simply fundingspecific projects; after all, our mission isto ‘energise research’ and bring the needfor scientific investigation of ME/CFS tothe attention of government andprofessional groups. For example, ourchairman, Dr Vance Spence, has givensome 58 lectures to a variety of audiencesover the decade, and we have been inregular contact with a range of researchgroups to try to stimulate new research;indeed, the projects we have funded arefar fewer than those we have tried to getoff the ground, and are only a tinyproportion of those we should like to seecommissioned. Also, each year we answerqueries from around 400 people bytelephone and e-mail in our efforts toprovide helpful information and broadcastresearch findings widely. The fact that we are one of only ahandful of organisations in the entireworld funding biomedical research intothis illness reminds us of the long journeyahead. In its 10 years ME Research UKhas made an enormously valuablecontribution; we now need yourcontinued support to take our researchagenda forward into the next decade andbeyond.

Dr Neil AbbotOperations DirectorME Research UK

editorial

Autumn 2010 • BREAKTHROUGH • 3

Experiences of pain in ME/CFS.......................4–5

How patients describe their pain, its location and its impact

Abnormalities in muscle..................................6–7

A Newcastle study looking at acid handling in muscle after exercise

Biochemical abnormalities in children.........8–10

Do children with ME/CFS have the same vascular abnormalities as adults?

Anniversary special......................................11–14

A celebration of 10 years of ME Research UK

XMRV: the plot thickens...................................15

What’s happened since the first reports of the virus

Recent research............................................16–19

Natural killer cells, gene expression after exercise, memory problems, ME and

CFS in medical text books, results of the FINE trial, and more

A hard day’s fundraising...............................20–23

Annalisa’s pyjamathon, this year’s London marathon, the new Mayor of

Hastings, tribute act concert, sponsored haircut, ME Research UK in the media

this issue


Pain is a very common symptom inME/CFS; it tends to be experienced in themuscles and/or joints, but it can often bewidespread and changeable in locationand intensity. In one survey, quoted in theChief Medical Officer’s report, 79% ofpatients said that they had severe painsometimes, much of the time, or all of thetime, and between 84 and 94% of patientsin formal research studies report somedegree of muscle or joint pain.Importantly, 53% of unemployed peoplesurveyed recently by the campaigningcharity Action for MEsaid that chronicpain was one ofthe greatestbarriers to theirobtaining paidemployment. Despite this,there is very littlescientificinformation about the specific paincharacteristics of ME/CFS patients. Whatkind of pain is it? Where is it localised?What strength is it? To explore suchquestions, ME Research UK providedpart-funding for a PhD studentship, underthe supervision of Prof. Lorna Paul and DrLes Wood (pictured on page 13), atGlasgow Caledonian University. Thestudent, Rebecca Marshall, has nowsubmitted her thesis, and the firstscientific paper from her work has justbeen published in the Journal ofMusculoskeletal Pain. For the investigation, 50 people withME/CFS and painful symptoms wererecruited from support groups acrossScotland; all had previously beendiagnosed by a consultant or generalpractitioner, and all met the CDC-1994and Canadian Guideline symptom criteria.No participants had any psychiatric illnessor any other serious conditions such ascancer, rheumatoid arthritis or multiplesclerosis (which would have affected theirexperience of pain). The investigators visited the patientsin their own homes to conduct theirinterviews, which allowed the

participation of those who were soseverely affected that they would not havebeen able to make a trip to the hospital.This was particularly important in thisstudy since the researchers wanted toensure that the findings represented thefull spectrum of ME/CFS. Between 10%and 25% of ME/CFS sufferers fall into the“severe” category, so 10 of the 50patients interviewed by Dr Paul’s teamwere either housebound or bedboundand had been recruited via the nationalcharity, the “25% ME Group” which

caters for severely illpatients.

Overall, the 50patients had beenill for an averageof 12.6 years(range 1.3 to27.4), and only

one was workingfull time, and two

part-time. A number of tools andquestionnaires were used to evaluateparticipants’ experiences of pain,and these consisted of a visualanalogue scale, the MargolisBody Chart, the McGill PainQuestionnaire, the PainAnxiety Symptoms Scale-20and the Medical OutcomeSurvey Short Form-36 (seeopposite for more detaileddescriptions of each of these). The results revealed thatpain is indeed an importantsymptom of patientswith ME/CFS. Themost commonpainful symptomwas muscle pain,which wasreported by morethan two-thirds ofpatients. Theaverage intensityof pain at thetime of theinterview wasreported to bearound 43 out of

a maximum of 100 mm on the visualanalogue scale, while the average intensityover the previous 24 hours was higher ataround 58 mm. The investigators suggestthat this latter value may be a moreaccurate reflection of patients’experiences, particularly if pain fluctuates.Significantly, ME/CFS patients reportedworse pain than did patients withrheumatoid arthritis or multiple sclerosisin previous studies, both conditions inwhich pain is recognised as a majorsymptom. Patients used words such as“throbbing”, “aching”, “tender”,“gnawing” and “burning” to describe thepain they experienced, while those withmore severe illness also used “exhausting”

and “nagging”. In fact, as thechart opposite shows, only the

severe patients chose theword “gruelling” while

Experiences ofPain

Muscle pain was

reported by more than

two-thirds of patients

with ME/CFS


none chose the less emotive words“tight” or “annoying” — indicating moresevere pain, and intensity, in the mostseverely affected group. These descriptions may give clues asto the mechanisms causing pain inME/CFS; in particular, “burning” pain isoften associated with neuropathicconditions in which the nerves have beendamaged. Also, they may help in assessingany change in the quality of pain overtime, such as after treatment, as Dr Paul’sgroup suggests. Despite this burden ofpain, most participants described theirmood as generally positive, although thosewith more intense pain tended todescribe a lower mood. The most common locations of painwere the cervical spine (in 66% ofpatients), the anterior thighs (44 to 46%),the lumbar spine (42%) and the posteriorcalves (38%), and most participants hadpain in more than one location. Nearly athird of patients said they experiencedtheir most severe pain in the area of thecervical spine/upper trapezius, while 20%reported the scapular/upper thoracic areaand another 20% reported the rightlumbar spine as the most painful regions.Twenty-eight participants said theyexperienced the worst pain in themorning, while it was the afternoon forfour individuals, the evening for ten andthe night for eight. The results of the Pain AnxietySymptoms questionnaire suggest that thestudy participants were not overlyanxious or fearful because of their pain,although the most severely affected weremore susceptible. When consideringquality of life, Dr Paul’s findings weresimilar to those of Dr Gwen Kennedy’sstudy from 2004 (published in the Annalsof Epidemiology). Patients tended to havereduced physical functioning and vitality(but not emotional or mental health), andagain this was more pronounced in thosewith more severe illness. This is the first major study todocument and categorise the painexperienced by people with ME/CFS, andto provide sound, objective, scientificsupport to their anecdotal and clinicalreports of painful symptoms. As theauthors say, “This study has emphasisedthat the problem of chronic pain… needs tobe treated as seriously as the painexperienced in other conditions such asrheumatoid arthritis and multiple sclerosis.”

Visual analogue scaleParticipants are asked to indicate their current pain intensity on a visual scalefrom 0 mm, representing “no pain”, to 100 mm, representing “most pain everexperienced”.

Margolis Body ChartParticipants use a diagram of the human body to indicate the areas in which theyexperience the most pain. This is then matched to a chart which divides the bodyinto 45 sections, in order to identify the locations of most pain.

McGill Pain QuestionnaireParticipants are asked to describe their pain using words from a standard list of78, grouped into 20 subcategories. Numerical values are assigned to each word,and a Pain Rating Index is calculated as the total of the values for each wordchosen. This provides a measurement of the pain itself (sensory component), aswell as unpleasant feelings and emotions (affective component), and how it isjudged by the sufferer (evaluative component).

Pain Anxiety Symptoms Scale-20Participants are asked to score their experience of 20 psychological aspects ofpain, such as anxiety, fearful thinking, feelings of wanting to escape or avoid asituation, and physiological responses. Each item is scored from 0 (never) to 5(always), and the total is calculated out of a maximum of 100.

Medical Outcome Survey Short Form-36A questionnaire consisting of 36 questions examining physical functioning, physicalrole, bodily pain, general health, vitality, social functioning, emotional role andmental health. The participant’s answers to each question are translated into atotal score from 0, representing poor health, to 100, representing good health.

Descriptions of pain used by ME/CFS patients

soleus and gastrocnemius muscles duringexercise, which involved raising andlowering the foot under very controlledconditions. Measures of autonomicfunction were also assessed.


Abnormalities in Muscle Prof. Jones’ and Newton’s results

have just been published in theJournal of Internal Medicine (2010).

Compared with normalcontrols, the patients’ proton

efflux (a measure of acid handling)was reduced immediately after

exercise (see the figureopposite), while their time

taken to reach maximumproton efflux wassignificantly prolonged, andthe magnitude of maximumproton efflux was reducedcompared with thecontrols. Taken together,

these findings point to asignificant impairment of proton

excretion in the recovery phasefollowing exercise — in simple

terms, ME/CFS patients recoveredsubstantially more slowly than controls. Could simple deconditioning be the

cause? Probably not, since bothmaximum voluntary contractionmeasurements and muscle volumewere similar in patients and in theinactive controls. Rather, theresearchers think it more likely that

impaired acid handing could be one ofthe mechanisms through which

autonomic abnormalities act to producepost-exercise symptoms and fatigue, giventhe role played by the autonomic nervoussystem in the regulation of acidtransporter pathways and vascular flow inmuscle.

Despite the key role of post-exercise symptoms in the illness,there has actually been very littlescientific investigation intomuscle physiology duringexercise in ME/CFS — a fact thatmakes these novel findings soimportant. Based on theseresults, ME Research UK hasnow organised funding for thenext step: an examination of thefunction of an energy-generatingenzyme which might be under-performing in people withME/CFS (see opposite).

The autonomic nervous system has arange of important functions, so theconsequences can be severe whenit goes wrong. Since ME/CFSpatients experience symptomssuch as dizziness, altered vision,nausea and fatigue when they arestanding, particularly when theyare standing still, the possibilityexists that the autonomicnervous system could be atfault. Since 2006, with thefinancial help of MEResearch UK, ProfessorsJulia Newton and DavidJones (pictured) of the Schoolof Clinical Medical Sciences,University of Newcastle, haveexamined a large group of patientsusing a battery of tests of autonomicfunction, including heart rate and bloodpressure. In a series of fascinatingscientific papers, they have reportedfinding autonomic dysfunction inthree-quarters of ME/CFS patients, amost unexpected result; they haveshown that the heart rate responseto standing is abnormal in asignificant proportion of patients; andthey have confirmed that blood pressureis lower, and blood pressure regulationabnormal, in this clinical group comparedwith healthy people. The autonomic nervous system alsoplays a part in regulating events inexercising muscle, however, and theresearchers hypothesised that itmight be involved in theexercise-induced symptoms socharacteristic of ME/CFS. Toexamine this, they enlisted thehelp of phosphorus magneticresonance spectroscopy (MRS),a marvelous tool which allowsassessment of acid (pH) handlinginside the muscle where theproblems might lie. Sixteen ME/CFS patientsand healthy controls matchedfor age and sex underwent MRSto examine acid handling in their

These findings point to asignificant impairment of protonexcretion following exercise

Prof. Julia Newton and Prof. David Jones


The first phase of the investigative strategy has alreadybeen funded by the Northern Clinical Network inNewcastle, and involves an examination of the function ofME/CFS patients’ cultured muscle cells; the muscle biopsiestaken during this phase represent a unique opportunity tostudy the pathways of metabolism within muscle, exploringthe expression of the key energy-generating enzymes and cellproteins which help to control acid build up within the cell. The second phase has been funded by ME Research UKand involves array studies to look at metabolic geneexpression in muscle. The aim is to show whether culturedmuscle cells from patients with ME/CFS have altered geneexpression, and whether the response of gene expression to“exercise in vitro” is impaired in patients’ muscle cultures. The exciting thing is that this series of interlinked studiesbrings together investigators from diverse academicbackgrounds (muscle energetics, muscle cell culture andnanotechnology development), all members of the Instituteof Cellular Medicine within Newcastle University, and allapplying their skills to the illness ME/CFS for the first time.

In the historical literature, the hallmark of myalgicencephalomyelitis (ME) has been marked muscle fatigabilityoften in response to minor degrees of exercise. Muscle cramps,twitching and extreme muscle tenderness were also commonfindings. And today, patients diagnosed with ME/CFS frequentlyhighlight the importance of peripheral “fatigue”, such asimpairment of muscle power, in their experience of illness. So itmakes sense for researchers to focus on muscle. Given their results published this year in the Journal ofInternal Medicine, the next step for Prof. Jones and hiscolleagues is to see whether a problem with muscle“bioenergetics” might be at the root of the slower recoveryfrom exercise seen in ME/CFS patients. For instance, it mightbe that acid build-up during exercise is the result of an under-performing energy-generating enzyme within the mitochondria(the “batteries of the cell”). To investigate this, the researcherswill undertake a range of in vitro studies, all based on primaryassay and culture of muscle cells (myocytes) in the laboratory,using cells harvested from ME/CFS patients and from matchednormal and chronic disease controls.

Abnormalities in Muscle

Focusing on muscle:next steps in Newcastle

Muscle proton efflux was reducedin patients after exercise

PatientsControls


There is a particularpoignancy to illness inyoungsters; thetransformation of abright, active child intoone who is unable to go

to school or play with friends issomething that touches us all. Estimates of the numbers of childrenaffected by ME/CFS vary, but withprevalence figures of 60 to 70 cases per100,000, it is likely that around 9,000people under the age of 16 in the UKhave this diagnosis. As the report to theChief Medical Officer in 2002 made clear,this illness “represents a substantial problemin the young” and “potentially threatensphysical, emotional, and intellectualdevelopment of children and young people,and can disrupt education and social andfamily life, at a particularly vulnerable time oflife”. In a previous issue of Breakthrough(issue 11, Spring 2010), we reported theresults of a study on the quality of life ofchildren with ME/CFS, recently publishedin Pediatrics by Dr Gwen Kennedy of theVascular and Inflammatory DiseasesResearch Unit in the University ofDundee. In parallel with this work, DrKennedy and her colleague Dr Faisel Khanhave been investigating biochemical andvascular abnormalities in children with thedisease, and their results have just beenpublished in the US journal Archives ofPediatrics and Adolescent Medicine. Like theprevious study, this work was supportedfinancially by ME Research UK, The YoungME Sufferers (Tymes) Trust, Search MEand Tenovus Scotland. The Dundee group has previouslyreported a number of biochemical and

vascular abnormalities in adults withME/CFS. These mainly involve the immuneand cardiovascular systems, and include anincrease in the programmed death(apoptosis) of white blood cells, raisedlevels of oxidative stress which candamage blood vessels and other organs,increased markers of inflammation, andabnormalities in blood vessel function. Allof these are potentially associated with afuture risk for cardiovascular problemssuch as heart disease and stroke. Drs Kennedy and Khan wanted toinvestigate whether these abnormalitieswere also present in children withME/CFS, given the potential long-termconsequences. Risk factors such as high

cholesterol and increased blood pressure,which are usually associated with adultdiseases, have also been found in children.These progress into adulthood ashypercholesterolaemia and hypertension,so it is important that risks are identifiedas early in life as possible. Twenty-five children with ME/CFS (allbetween the ages of 10 and 18 years) and23 healthy children matched for age,gender and stage of puberty wererecruited from throughout the UK. Thediagnosis of ME/CFS had been madeaccording to a revised version of theCDC-1994 case definition, and wasconfirmed by the researchers from aclinical examination.

Biochemical

abnormalities

in children

with ME/CFS

Dr Gwen Kennedy

Number ofWhite blood cells

undergoing apoptosis


A blood sample was taken from eachchild (using an anaesthetic cream tominimise their discomfort), and this wasthen subjected to a battery of tests in DrKennedy’s laboratory (see the boxoverleaf). The child’s blood pressure wasmeasured, and then the pulse at theirwrist was detected using a special pen-likeprobe applied lightly to the skin. Thisrecords the fluctuations in pressure aseach pulse travels along the artery, and isexactly what you feel with your fingerwhen you take your own pulse. Thisrecording of the pulse is then analysed ona computer to give information on howflexible the artery is, which gives anindication of its health and function. Overall, compared with healthycontrol children, the young people withME/CFS had:

1. Higher levels of oxidative stress,manifested as elevated levels ofisoprostanes.

2. Reduced levels of vitamins C and E.3. A greater percentage of white blood

cells undergoing apoptosis (see thegraph above).

4. A trend towards increased arterialstiffness, although this was notstatistically significant.

As Dr Kennedy points out, theincreased oxidative stress may be due to adeficiency of antioxidants in the diet (suchas vitamins C and E, found to be reducedin this study). However, she feels it ismore likely to have been caused by whiteblood cells releasing an excessive amountof highly reactive free radicals, possiblyfrom exercising muscle. This would tie inwith the finding of increased white cellapoptosis, and DrKennedy haspreviouslyreportedincreasedoxidativestressfollowingexercise inadults withME/CFS. Shedoes emphasise,however, that morestudies, perhaps including an assessmentof diet, are needed to determine thismechanism. The increased apoptosis (orprogrammed cell death) may be caused bya number of factors, including a persistentviral infection or toxic agent, or anabnormal immunological response. This

finding is particularly intriguing given thatmany patients, including most children inthis study, report that their diseasestarted following a viral infection of somekind. At present however, there isinsufficient evidence to make a causal linkbetween infection and increasedapoptosis, though the finding is tantalising. Although there were no other

statistically significantchanges in the

children withME/CFS, therewas aclustering ofmarkers suchas arterialstiffness andcholesterol that

showed smallchanges which

may indicate thepossibility of future cardiovascular risk.This type of clustering has been shownbefore in healthy children and in youngpeople with diabetes. Although it shouldbe stressed that children with ME/CFS areat no immediate risk of developingcardiovascular problems, we might expectthese changes to become greater (closer

Children withME/CFS have an

abnormality in thebehaviour of their

immune cells


Biochemical measurementsOxidative stress

Oxidative stress is damage caused by highly reactive molecules called freeradicals. They are normally kept under control by natural processes whichremove them from the circulation, but when an imbalance occurs they can be leftto cause damage unchecked. In particular, free radicals can change our normal“good cholesterol” into something more harmful, leading to heart and circulationproblems. This “bad cholesterol” is known as oxidised low densitylipoprotein. The reaction of free radicals with essential fatty acids (which areimportant substances obtained from the diet) produces compounds calledisoprostanes, which act as another marker of oxidative stress. Other signs ofoxidative stress include low levels of vitamin C and vitamin E.

InflammationInflammation is a complex set of immunological and vascular processes whichoccur in response to injury or infection. Although it is a vital part of our body’sdefence mechanism, prolonged inflammation can be harmful to otherwise healthytissue, and causes diseases such as rheumatoid arthritis. In particular, it can causedamage to blood vessels leading to cardiovascular disease. C-reactive proteinis found in the blood and its levels rise in response to inflammation, making it auseful marker.

ApoptosisApoptosis is the programmed destruction of unwanted cells in the body. It is animportant process removing cells that have reached the end of their natural life,as well as controlling infections. Apoptosis is carried out by white blood cellscalled neutrophils, which are part of the immune system. Increased apoptosis canbe a sign of abnormalities in the immune system, and may be caused by apersistent viral infection or quicker-than-normal turnover of neutrophils.Apoptosis can be measured by looking at the expression of the protein annexinV and other substances on the surface of neutrophils. This gives an indication ofwhat proportion of these cells are healthy, dead because of external factors, ordead because of apoptosis.

The Tymes Trust

The Young ME Sufferers (Tymes)Trust is the longest-established UKservice for children and young peoplewith ME and their families. It runs anadvice line, provides access to MEexperts for doctors, teachers andsocial workers, and produces amagazine for children, families andprofessionals. The Trust played amajor role in producing the children’ssection of the Department of HealthReport on CFS/ME (2002). See theirwebsite www.tymestrust.org fordetails and free publications.

to the adult pattern) as the children growolder and have been ill for longer. Dr Kennedy and her team concludetheir report by saying that the findingsshow that many children with ME/CFS“have an underlying, detectable abnormalityin the behaviour of their immune cells,consistent with an activated inflammatoryprocess”, and provide evidence of “apersistent or reactivating viral infectiontriggering apoptosis of white blood cells withan increased production of free radicals”. It is important that theseabnormalities have now been recognisedin children with ME/CFS. To date, asidefrom symptomatic treatments, no specifictherapy is available for children or adultswith ME/CFS, so there is an urgent needfor intervention trials. Based on these andother biomedical findings in the disease,putative therapies could perhaps includeboth pharmacological and non-pharmacological strategies (to treatdysautonomia, for example), orantioxidant or antiviral interventions.

Search ME

Search ME, based at Rosyth in Fife, wasfounded in 2002. Its aims are to improvethe lives of people with ME and toprovide them with a voice on the CrossParty Group for ME in the ScottishParliament. The charity has raised thebulk of its donations through organisingrock and pop concerts. Search MEbecame an early supporter of the work atthe University of Dundee and helped fundthe research carried out there. Furtherinformation can be found on their websitewww.search-me.org.uk.

Tenovus Scotland

Tenovus has been supportinginnovative medical research withinScottish Universities and TeachingHospitals for over 40 years. It raisesfunds through private donations,Trusts, legacies and fundraising events,and its principal aim is to assist youngresearch staff with small grants to gettheir research programmes underway.Find out more at their websitewww.tenovus-scotland.org.uk.

Financial support for this project


The people who gathered for lunch atMurrayshall House Hotel in ruralPerthshire on 3rd October 2010 werethere at their own expense to celebratethe 10th Anniversary of ME Research UK(the photo below shows staff, volunteersand family members). The charity was founded in 2000 byDr Vance Spence, Robert McRae andRoger Jefcoate CBE (who becamefounding patron), all of whom realisedsomething had to be done to promoteand fund research into ME/CFS. As Vance

ME Research UKThe first 10 years

says, “Good scientific research into ME isvital, but looking around we saw that basicbiomedical research was grossly underfunded.If money and resources could be found, thenthe tectonic plates might start to move. Wewere also concerned that the research picturewas heavily skewed towards psychiatry andpsychology, an odd business since Bob and Ihad a physical illness and had nopsychological problems.” With the support of our patrons TheCountess of Mar and Dr Gordon Parish,the organisation has grown in size and

respect over the decade, punching aboveits weight in a variety of spheres. The trustees have bold plans for thefuture, based on the small, committedteam of core staff, an advisory panel ofprofessional scientists, and a group oftrusted volunteers who help the charityto run efficiently. From this strong start,the whole team are committed toestablishing ME Research UK as a majorforce for change that will make a real,long-term difference to the lives andprospects of people with the illness.


Over the past 10 years we have fundedthe work of a number of scientists in theUK and overseas, whose research coversseveral different areas of interest. Funding was provided for 29 specificinvestigations on ME/CFS patients (someof which are listed on the right), and weare particularly grateful to some of theME organisations which have providedlarger donations to help us fund specificprojects.

Unravelling the scientific basis of ME/CFS,or the collection of diseases currentlygiven that label, is no simple matter.Funding one-off investigations is usefulsince these can provide pilot data forsubsequent grant applications, or spark offinterest in other researchers. But in modern science, realbreakthroughs come at the end of aprogramme of painstaking work by aspecialist group of researchers. One ofthe few examples of such a programmeon ME/CFS, anywhere in the world, is thework at the Vascular Diseases ResearchUnit, University of Dundee. This group has received a number ofgrants from ME Research UK in the past10 years. In a step-by-step progressioninvolving both adults and young peoplewith the illness, the group has uncovereda number of abnormalities.

� Unusual sensitivity of blood flow toacetylcholine (a neurotransmitter).

� Increased levels of isoprostanes (agold standard marker of oxidativestress in the bloodstream).

� An unexpected increase in dying(apoptotic) white blood cells,consistent with an activatedinflammatory process or persistentinfection.

� Increased cardiovascular risk factorswith arterial stiffness in patients.

� Biochemical anomalies in childrenmirroring those found in adults withthe illness.

Such a progression — whethertowards positive findings or away fromnegative ones — is the norm for scientificinvestigation. The burning need in this illness is forthere to be many groups undertakingprogrammes of research across a range ofbasic and clinical science fields, so that a‘critical mass’ of investigators can producea ‘critical mass’ of biomedical data.

An example ofconsistent funding

Our priority has always been tosupport innovative clinical and biomedicalstudies, based in established researchinstitutions, investigating the causes ofME/CFS and the effectiveness of potentialtreatments. All our grants are competitiveand are subject to peer review. Fullerdetails of these and other projects,including the key findings published inscientific papers, can be found at theresearch section of our website.

Dr Gwen Kennedy

Dr Jo Nijs

Dr Ellie Stein

Dr Jonathan Kerr

A decade of research

Delegates at the 2008 New Horizons Conference


Exercise, pain, and the immune and sensory systemsDr Jo Nijs, Vrije Universiteit Brussel, Brussels, Belgium

Muscle bioenergetic abnormalitiesProf. David Jones, Institute of Cellular Medicine, University of Newcastle

XMRV in Swedish patientsProf. Jonas Blomberg and Prof. Carl-Gerhard Gottfries

Uppsala University Hospital, Sweden(with co-funding from the Irish ME Trust)

Vitamin D supplementation and cardiovascular disease riskDr Faisel Khan, Institute of Cardiovascular Research, University of Dundee

Autonomic nervous system dysfunction — a clinical studyProf. Julia Newton, School of Clinical Medical Sciences, University of Newcastle

(with cofunding from the Irish ME Trust and the John Richardson Research Group)

Interleukin-6 and its receptorsProf. Myra Nimmo, University of Strathclyde, Glasgow

Biochemical and blood flow aspects in childrenDr Gwen Kennedy, University of Dundee

(with cofunding from The Young ME Sufferers Trust and Search ME)

Evaluation of pain and therapeutic interventionsDr Lorna Paul and Dr Les Wood, Glasgow Caledonian University

Gene expression studiesDr J Kerr, St George’s Hospital, University of London

(co-funded by the Irish ME Trust)

Non-invasive neuroimaging of the brainProf. BK Puri, Imperial College London

(with co-funding from ME Solutions and the MRC Clinical Sciences Centre, Imperial College)

Exercise tolerance and post-exertional symptomsProf. Brian MacIntosh and Dr Eleanor Stein, University of Calgary, Alberta, Canada

Chronic inflammation and apoptosis (programme)Prof. J Belch, Vascular Diseases Research Unit, University of Dundee

Differential gene expressionProf. J Gow, University Department of Neurology, Glasgow

Novel mechanisms of fatigue in ME/CFSDr P Ansley, Northumbria University, Newcastle upon Tyne

Effects of muscle fatigue on H-reflex excitabilityDr Les Wood, Glasgow Caledonian University

Projects fundedby ME Research UK

Dr Faisel Khan

Dr Les Wood and Dr Lorna Paul

Prof. Jonas Blomberg

Dr Julia Newton


ME Research UK’s mission to “EnergiseME Research” involves raising awarenessof the need for biomedical research to avariety of audiences, hosting conferencesand meetings, and providing high qualityinformation on all aspects of the illness:from summarising and appraising scientificliterature on ME/CFS to informing thepolicy agenda. Here are some of our keyachievements.

Scientific meetingsWe have hosted two New HorizonsInternational Research Conferences(Edinburgh 2007 and Cambridge 2008); aResearch Colloquium (2007); and aResearch Workshop (2005).

DVDs producedA DVD lecture by Dr Vance Spence onresearch issues and challenges was made,and 3,000 copies distributed. We alsoproduced films of our conferences.

Books and key articles“Shattered — Life with ME” (Thorsons)by Dr Lynn Michell, an early trustee of thecharity, was produced and distributed.And a plethora of specialist articles havebeen written for the magazines of localand national ME organisations (see theinformation section of our website).

Raising awarenessThe first 10 years

XPG at Scottish ParliamentWe provided the impetus and initialfunding for the formation of a Cross PartyGroup on ME at the Scottish Parliament.

Royal visitIn 2009, we were honoured with a visitfrom His Royal Highness The PrinceEdward, who met the team and wasintroduced to our work.

Talks and presentationsDr Vance Spence gave some 58 publictalks on ME/CFS research and relatedissues in ten years, at venues ranging fromSheffield and Southampton to Dumfriesand Dublin.

Informing policyFormal representations to official bodieshave included: Royal Society of Medicine(2009); National Institute for ClinicalExcellence (2006–7); Gibson WestminsterParliamentary Inquiry (2006); RoyalCollege of Paediatrics and Child Healthguidelines (2006); and Scottish Parliament(2001 and 2005).

Breakthrough magazineWe have developed Breakthrough into afull-colour bi-annual magazine featuringresearch and comment, with a readershipof almost 7,000.

WebsiteOur website, which also contains ourresearch database, has become a sourceof information for researchers, healthcare professionals and people with theillness across the world.


In October 2009, a scientificpaper in the prestigious journalScience reported the discoveryof a potential retroviral link toME/CFS, which is estimated toaffect some 17 million peopleworldwide. The consortium ofresearchers, including theWhittemore Peterson Institute(WPI) located at the Universityof Nevada, USA, had found thatDNA from xenotropic murineleukaemia virus-related virus(XMRV) could be detected inthe peripheral bloodmononuclear cells of 67% ofME/CFS patients compared withonly 3.7% in controls, and thatXMRV proteins were beingexpressed in blood cells fromME/CFS patients at very high levelscompared with controls. Since the presence of infectiousXMRV in white blood cells of patientscould account for some of the knownfeatures of this chronic illness (e.g.,neurological symptoms and immunedysfunction with inflammatory cytokineupregulation), the finding was tantalisinglyappropriate. However, scientific resultsmust be confirmed by others, and thecrucial first step is for other independentlaboratories across the world to look forXMRV infection in their own localpopulations. So ME Research UK (alongwith the Irish ME Trust) quickly providedfunding for researchers to test SwedishME/CFS patients (see the Spring 2010issue of Breakthough). In the ten months following the initialreport, four other studies have beenpublished, all “negative” for the presenceof the virus in English, Scottish, Dutch andAmerican patients. At first glance, thesenegative reports from four differentresearch groups across the globe, eachwith a track record in virology, is aserious blow to hopes of XMRVinvolvement in ME/CFS. However, the situation is morecomplex, and the past few months haveseen an intense discussion of intricatemethodological issues. As Dr Robert

Silverman, the discoverer of the XMRVvirus, makes clear in an excellent review(Nature Reviews Urology, July 2010), theremight be several reasons — apart fromplain contamination, which is unlikely —for radical differences between studies. First, there could be geographicaldifferences in the distribution of XMRV,as is the case with another humanretrovirus, HTLV-1. Next, sequencevariations in XMRV, and the existence ofdivergent or related viruses, is possible,and these could easily be missed by manyof the methods, in particular protein chainreaction (PCR). Also, the absence of standardised,highly sensitive methods for the detectionof XMRV, coupled with a lack of widelyavailable, positive control human samples,might be contributing to the differentresults obtained between studies. This lastpoint is important, particularly if XMRV isindeed hard to detect by the conventionalPCR methods used in the four negativepapers; a recent scientific article(Virulence, Sep/Oct 2010) has proposedfour additional blood-based lab assays formore sensitive detection of XMRV. Then, in a dramatic twist to the story,Dr Harvey Alter of the National Institutesof Health published a report in Proceedingsof the National Academy of Sciences (23rdAugust 2010). His team were examining

What are MLVs?Murine leukaemia viruses (MLVs)are gammaretroviruses capable ofcausing mouse (murine) cancer.

There are many types of MLVs,most used in cancer research (forexample, specific genes can bedelivered to target cells by MLV-derived particles).

XMRV is part of the MLV “family”,but an unusual one because it caninfect other non-mouse species —hence its name “xenotropic”.

Dr Alter reported evidence forthree different variants of MLV inME/CFS patients, though onepredominated, infecting 86% ofpatients.

XMRV: the plot thickenslong-stored samples from 37CFS patients for traces of theXMRV “gag gene”. But instead offinding XMRV itself, theyuncovered a more diverse groupof closely related viruses;startlingly, these were present in86.5% of the patients but only6.8% of the control samples. The researchers claim thatthe diverse viral sequencesidentified closely resembled thepolytropic mouse viruses (thoseinfecting a range of hostsincluding mice), which is whythey adopted the term “MLV-related virus” (see the boxbelow). However, Dr Alterpointed out that his worksupports the original report inScience in 2009 since XMRV is a

subset of MLVs, although his team did notprecisely replicate the work in the originalstudy. Whether or not MLV-like virusesplay a critical role in ME/CFS, the scientifictwists and turns of the past year havebeen absorbing and compelling, and moreare yet to come.


Indomitable spiritWhile recovery from ME/CFS is a realpossibility, particularly in the young, manypeople still remain chronically ill for anumber of years coping as best they can.Healthcare professionals recognise anumber of different “strategies” forcoping with chronic illness, ranging fromself distraction or denial or self-blame tohumour or religious faith. So, whichstrategies are most often used by ME/CFSpatients, and does length of illness makeany difference to how they cope? Researchers from DePaul University,Chicago (writing in Psychological Reports)compared coping strategies betweenambulatory adult patients with a longer(more than 2 years) or shorter (2 yearsor less) duration of illness. Patients’ levelsof illness and symptoms were assessed,and the Brief COPE inventory was usedto identify their ways of coping. Interestingly, there were nodifferences in physical impairment orsymptom severity between the twogroups. But people with a longer durationof illness were more likely to use

CHICAGO

Subgroupsin children

There are some 13 million people in theUK under the age of 16, and we’re toldthat around 9,000 (0.07%) of them have adiagnosis of ME/CFS. But what does thatmean? Do they all have the sameunderlying disease or might there be a

BATH

Recent research fromaround the world

strategies such as active coping (e.g.,“taking action to try to make the situationbetter”), positive reframing (“looking forsomething good in what is happening”),planning (“thinking hard about what stepsto take”) and acceptance. And they wereless likely to use behaviouraldisengagement (such as “giving up theattempt to cope”) than people ill for ashorter time. The key finding that patients showimprovements in coping over time,regardless of their physical function orsymptoms, illustrates one thing: theindomitable power of the human spirit incoming to terms with a dreadful clinicaland social situation.

collection of different illnesses in thisdiagnostic black box? To investigate this, the Bath specialistpaediatric service which covers the south-west of England decided to review its dataon children assessed between 2005 and2008. The team employed factor analysis,a statistical technique that usescorrelations between symptoms todetermine individual “factors” that mighthypothetically correspond to pathologicaldisease processes, and might identifyclinically differentiable subgroups(“phenotypes”) of children. Analyses wereperformed on the symptoms reported atinitial assessment by 333 children andyoung people (average length of illness 17months, 40% attending school), andregression analyses included variablessuch as sex, age, length of illness, anxietyand markers of severity (fatigue, physicalfunction, pain and school attendance). The scientific report (published inArchives of Disease in Childhood) identifiedthree different clinical “phenotypes”,described under the broad headings ofmusculoskeletal, migraine and sore throat.The musculoskeletal subtype wasassociated with muscle and joint pain, andhypersensitivity to touch, and was morestrongly associated with fatigue than theothers. The migraine subtype wasassociated with noise and lighthypersensitivity, headaches, nausea,abdominal pain and dizziness, and it alsohad the strongest association with lowerphysical function and worse pain than theother phenotypes. The sore throatsubtype was associated with sore throatand tender lymph nodes. This appeared tobe the least severely affected group, andwas associated with female gender butnot with fatigue or pain. Interestingly,neither age, length of illness or symptomsof depression seemed to affect phenotypeclassification. While factor analysis cannot prove theexistence of separate illnesses shelteringunder the umbrella term “ME/CFS”, thefinding that three phenotypes can beclearly differentiated from each other inchildren with the diagnosis is certainlysuggestive.


MIAMINatural born killers

Ask any person with ME/CFS whatadvance in research they would most liketo see, and surely a diagnostic test ormarker for the disease would come nearthe top of the list. Genetics might appearto provide the greatest hope in achievingthis goal, but there are other options, as ateam of researchers from the Universityof Miami have recently demonstrated. Their work (published in PLoS One)has focused on two potential markers thatare thought to be involved in thedevelopment of ME/CFS. First, naturalkiller cells, which are a type of whiteblood cell responsible for killing othercells; they are important in the body’simmune defence against tumours and viralinfections, but their function appears tobe deficient in ME/CFS. Second, dipeptidylpeptidase IV (also known as CD26), whichis an enzyme also involved in immuneregulation and programmed cell death,

Gene expressionduring exercise

The cardinal symptom of ME is profound,post-exertional loss of muscle powerassociated with muscle pain, tendernessand swelling, and “post-exertional”symptoms are still key to diagnosis. Eventhe imperfect NICE Clinical Guideline of2007 insists that post-exertional malaiseshould be present. Experimental studiesof the effects of exercise in patients aretherefore vital, and a recent report(published in the Journal of Pain) hasexamined gene expression 8, 24 and 48hours after a 25-minute bout of whole-body exercise involving a combined arm-leg cycle ergometer. ME/CFS patients, but not healthycontrols, reported increased physicalfatigue up to 48 hours after the exercisebout, and only this group showedsignificantly increased levels of pain andincreased mental fatigue up to 48 hours.But the gene expression results were themost interesting. With this moderateexercise task, the 16 healthy controlsubjects exhibited no significant increasesin expression of any of the genes, whereasthe 19 ME/CFS patients showed increasesin the expression of a variety of genes. Overall, the patients showed greaterincreases than healthy people in genesthat can detect increases in muscle-produced metabolites (ASIC3, P2X4 andP2X5), genes that are essential forsympathetic nervous system processes(adrenergic b-2A, b-1 and b-2, as well asCOMT), and immune function genes (IL10and TLR4) — increases that wereobserved to last from 30 minutes to 48hours. In the subgroup of ME/CFS patientswho also had fibromyalgia, these increaseswere highly correlated with symptoms ofphysical fatigue, mental fatigue and pain. Given that approximately 90% of theME/CFS patients could be distinguishedfrom healthy controls using four of thegenes measured (P2X4, b-1, b-2 andIL10), it may be that alterations in geneexpression from circulating white bloodcells after exercise could come to be usedas objective markers for the illness,although much more work would berequired to establish this with certainty.

UTAHand which has previously been found tobe a marker for various types of cancer.The levels of this enzyme on lymphocytes(white blood cells) has also been shownto be increased in people with ME/CFS. The Miami study found that thecytotoxic function of natural killer cellswas significantly lower in 176 ME/CFSpatients than in 230 healthy controls.Also, the proportion of lymphocytespositive for CD26 was higher in thepatients than in the controls, while thelevels of CD26 expressed on T cells andnatural killer cells and in the blood waslower. Taken together, these observationsare consistent with the idea that infectionis involved in the initiation and/orpersistence of ME/CFS. Could natural killer cells’ cytotoxicityand CD26 expression, or a combination,become useful as objective markers fordiagnosis or treatment targeting? Well, asyou read this sentence, the researchersare engaged in the next phases of theirwork, looking at how these markerschange throughout the illness, to answerthat very question.


Memory andattention problems

Neurocognitive problems are one of themost frequent and disabling symptomsassociated with ME/CFS. In oneinvestigation, 89% of patients reportedmemory/concentration problems, while inanother large study memory/attentiondeficit problems were reported byapproximately 90% of 2,073 consecutivepatients. Crucially, patients often reportthat their cognitive problems can be madeworse by physical or mental exertion. Butdo such self-reported anecdotes aboutcognitive symptoms also show up asmeasurable deficits on objective cognitivetesting in a clinical setting? Meta-analysis is a method ofcombining results from a range of studiesto obtain an overall estimate of the “true”

AUSTRALIAeffect of a treatment. Researchers at theUniversity of Adelaide, South Australiahave just published (in PsychologicalMedicine) a meta-analysis of all relevantclinical trials examining cognitivefunctioning in people with ME/CFS, withthe aim of identifying the pattern andmagnitude of these deficits. Overall, theyfound a very mixed bag of 50 studies(made up of 1,577 patients and 1,487controls) published between 1988 and2008 from which, nevertheless, a clearand very revealing pattern emerged ondetailed examination. The most significant cognitive deficits(see the chart above) were found in“attention” (encompassing attention spanand working memory), “memory”(examined from verbal and visual memorytests, mostly memory for word lists) andreaction time (assessed as responses toboth simple and complex choice stimuli).These results were consistent with thememory and concentration problems thatpatients themselves complain about. In

contrast, there were no apparent deficitson tests of “fine motor speed”,“vocabulary”, “reasoning” or “globalfunctioning”, suggesting that the “higherorder” cognitive abilities such as language,reasoning and intelligence remainunimpaired. Importantly, most studies thatexamined the impact of self-reporteddepression on cognitive functioning failedto find a relationship, indicating thatdepression was not responsible for mostcognitive impairments. The range of these studies and theclarity of the findings leave no doubt thatpeople with ME/CFS have moderate tolarge impairments in simple and complexinformation processing speed, and in tasksrequiring working memory over asustained period of time. As the authorspoint out, the deficits in performance arearound 0.5 to 1.0 standard deviationsbelow that of healthy people, a fact whichexplains the significant impact cognitiveproblems have on patients’ day-to-dayactivities and quality of life.

Cognitive deficits in patients with ME/CFS


Medical text booksTo a patient with ME/CFS, the attitude oftheir general practitioner towards theillness can have a big impact on howquickly they are diagnosed, howsympathetically they are treated, and theiraccess to healthcare services. Yet weknow that a large percentage of GPs(roughly half in one 2005 study) don’tbelieve the condition actually exists —despite official and authoritativeconfirmation of the reality andseriousness of the illness by variousreports, such as the 2002 CMO reportand the 2007 NICE guideline. And weknow from phone calls to the charity thatpatients on the ground can struggle tofind an understanding doctor willing totake their illness seriously. Medical education has a role to playin forming attitudes, particularly textbooks which, though not usually as up-to-date as articles in scientific journals, areoften also used as a source of referencesand reviews. One group at DePaulUniversity in Chicago recently set out to

CHICAGOA FINE surprise?

From 2003 to 2009, the vast bulk of the£3.1 million spent by the MedicalResearch Council on ME/CFS researchwent into two clinical trials. The largest was the PACE trial whichcompared cognitive-behavioural therapy(CBT), graded exercise (GET) and pacing,and which has yet to report its results.The other study was the FINE (FatigueIntervention by Nurses Evaluation) trial inwhich severely affected patients wererandomly allocated to one of threetreatment groups: “pragmaticrehabilitation”, a nurse-led self-helpapproach which included elements of CBTand GET delivered in the patients’ homes;supportive listening; or usual careprovided by their GP. The first results of the FINE trial, thecost of which exceeded £820,000, werereported recently in the British MedicalJournal. A total of 296 adults with ME/CFSwere enrolled, and after 20 weeks oftreatment, patients receiving pragmaticrehabilitation were significantly lessfatigued and depressed, and were sleepingbetter than those who received usual care(although there was no difference inphysical functioning). However, when the participants wereseen one year later there was no longerany difference between these twotreatment groups. Thus, while pragmaticrehabilitation appeared to help fatigue anddepression in the short term, over alonger period it was no better than usualcare provided by a GP (with supportivelistening having no extra benefits at all). Are these negative results a surprise?Not really, given that pragmaticrehabilitation does not, and was neverintended to, address the patho-physiological basis of disease in theseseverely ill people. The real surprise (which is discussedmore fully in the July 2008 issue ofBreakthrough) is that most of the MRC’sinadequate grant-spend on ME/CFS hasgone to fund trials of non-specificmanagement and coping strategies, at theexpense of truly biomedical research —the reverse of the situation in otherillnesses such as multiple sclerosis orrheumatoid arthritis.

understand more fully how ME/CFS isrepresented in medical text books. Theyselected a total of 119 mostly USpublished books in a variety of areas(including immunology, pathology, internalmedicine and psychiatry), and reviewedthe number of pages mentioning “CFS”and whether that information includedany mention of aetiology, classification,diagnosis, recommended treatments orprevalence. Importantly, they also notedwhether the text specifically mentionedthe term myalgic encephalomyelitis, “ME”. Their results (published in theAustralian Journal of Primary Health) areunsurprising and disheartening. Only40.3% of the books they reviewedincluded any information on “CFS”, andonly 16% had any mention of “ME”terminology — far smaller proportionsthan for other less prevalent illnesses,such as multiple sclerosis (57%) and Lymedisease (55%). In fact, the topic took up apaltry 116.3 pages (0.09%) of the 129,527total reviewed. Of course, less is known aboutME/CFS than these other conditions, buteven so, these books might have beenexpected to cover an illness estimated toaffect between 400,000 and 900,000people in the USA, which is where mostof the textbooks were published. Suchchronic under-representation of ME/CFSin medical textbooks surely serves toreinforce, and possibly legitimise, the

prevailing scepticism aboutthis condition.

LONDON


PyjamathonTo mark ME Awareness Week 2010, Annalisa McGorlick worenothing but pyjamas for 7 days (as proved above)! She explains, “At the risk of being locked up, I went around inpyjamas, indoors and outdoors, rain or shine, to the pub, to thesupermarket and everywhere else. I had to do something, since ourgovernment puts £0 into biomedical research for this illness, butwithout financial backing research cannot be carried out and thislife-destroying illness will continue to go untreated and unrecognised.” Annalisa’s ME symptoms became severe at age 16, and nowafter a long, hard journey and various treatments, she is able tolive a semi-normal life and to go out a few times a week —hence the “Pyjamathon”. She was very pleasantly surprised withthe public reaction which was one of support and intrigue, andraised £240 from the event.

Bucket collectionsThe aficionados of the WorcestershireME Support Group, Pauline and MikePearson and Warwick Davis (pictured)got together with the Solihull and SouthBirmingham ME Support Group to holdbucket collections for ME Research UK. In the summer they headed forBeckett’s Farm Shop at Wythall andEvesham Country Park shopping andgarden centre with their ME informationstand and buckets, raising over £930. The group is very active, and itsmonthly informal gatherings are heldunder the auspices of County Co-ordinator Jill Pigott. Many thanks to all itsmembers for supporting this event.

Tribute Act ConcertAmy and Sue Bakewell were interviewed by BBC Radio Leicesterat the time of the tragic case of Lynn Gilderdale, since Amy isvery seriously affected with ME and has lived in isolation in herdark bedroom for 14 years. After this, the presenter visited Amyand offered to organise a charity concert to raise funds for MEresearch, an offer the family couldn’t refuse. The performances at the concert were all tribute acts: TheFib Four as the Beatles, Micky Vegas as Elvis Presley, and Cliff-As-If as Cliff Richard. They all gave a super evening’s entertainmentat Thornton Working Mens Club, and the extremely well-supported event raised £850. Sue explains, “Two days before the concert on 12th May, MEAwareness Day, BBC Radio Leicester broadcast its mid-morning showfrom our village shop. It was great fun, incorporating interviews withcustomers, our local ME support group, and Amy. We were pleased tobe helping to raise the profile of ME with this excellent publicity.”

Fundraising''Day

A`̀ Hard's

FriendsThe

in


London Marathon 2010Virgin London Marathon day was a great festival of fun for everyone involved. MEResearch UK has benefited greatly from London Marathon runners in the past. In 2008,Robert Ogden, Madhi Choudhury and Ian Bottomley ran for us, as did Harvey Gurryand Matthew Fielding in 2009. And this year, we were honoured to have twochampions who again used their individual places to run on our behalf. One of the runners was Dan Plant whose sister had ME some years ago but hassince made a wonderful full recovery, so he wanted to help raise funds for research. Hesays, “After a lot of training, I made it on the day and gave it my best shot — something of amiracle in itself for someone who previously considered lifting a few pints as exercise.” Our other runner was James Albiges (pictured below), who over the last fewmonths has seen the debilitating effect of ME first hand so wanted to raise money for acause close to his heart. His aim was “to beat 4 hours and then retire gracefully”. Both didvery well: Dan crossed the line in 4.41.20, and James in 3.56.37, beating his 4-hourtarget!

Mayor of HastingsHastings’ new Mayor, Kim Forward, tookup her post at the annual mayor-makingceremony in May. Proposing her, a fellowCouncillor said, “Kim relates to all thepeople she meets with warmth and genuineinterest in their well-being. These qualities willbe invaluable in her new civic role.” In herspeech of acceptance Mayor Forwardpromised to bring energy and enthusiasm,and to promote the interests of Hastingsand St Leonards, beautiful places whichhave so much to offer. Mayor Forward has chosen tosupport three charities in her mayoralyear: the NSPCC, Care for the Carersand ME Research UK. Her 14-year-oldson has had ME for some time, and is nowable to walk again although his recoveryfrom the debilitating illness has been slow. We wish Kim a successful year inoffice, and send her our grateful thanksfor choosing us as one of her supportedcharities.


Greg loses his hairGreg Carslaw from Birmingham promisedhimself that he’d wait a decade beforegetting a haircut. But after 8 years hethought a trim might be nice, and hisfriends suggested that they might evendonate money to charity to see it cut. But the deal was complex. If hemanaged to raise £100, Greg would cutoff half his hair (head, beard, eyebrows,nasal-hair, whatever). But after that, forevery £41.26 raised (amount selected byarbitration) he’d shave off half hisremaining hair. This meant that ifeveryone he knew offered up a fiver, he’dbe left with one eyebrow. As an addedbonus, whichever generous person gavethe most money would have the optionto specify some intermediate cut stylewhich Greg would have to wear for 24hours. The photo shows Siz, eager with theshears to do a lot of lopping — a threatshe carried out a few days later. Gregraised over £500, so thanks to him and allhis mates.

Run, Simon, Run!Simon Patchitt’s Bristol 10k run duringME Awareness Week was a great success.“It’s the first time I’ve been in any kind ofrace since sports day in 1994,” says Simon,who crossed the finish line in 56 minutesand 38 seconds. “I really enjoyed it, eventhough I needed oxygen in the medical tentafterwards!” (As it turned out, the nurseremembered him from school!) Linda, Simon’s girlfriend, has had MEfor almost 10 years. She says, “Manysufferers (like me) are severely affected, butbecause they often can’t go out, no one seesthem, so nobody realises how ill they are.”She saw the run as a great chance to raiseawareness about the impact of ME. Linda and Simon collected £1,085from the event — more than double theirtarget. “We’re so pleased; thanks toeveryone who sponsored the run.” Since therace, Simon has kept up the running andhas entered the Bristol half marathon inSeptember.


hours.

Shop at Amazon for ME Research UKCan there be any easier way to earn money for our charity? If you are buying fromAmazon, then just click through the link on the Amazon page on our website, and 5%or more of your purchases could be making its way back to ME Research UK. It reallyis that simple. Whether it’s books, electronics or toys, Amazon has it all. Provided that youconnect to Amazon via one of our links, your shopping will qualify. The amount we getvaries according to the type of product and the type of link followed. It won’t cost youa penny more, and you won’t lose out on other discounts, so please help us byshopping via ME Research UK’s Amazon link. Visit our website for more details: www.meresearch.org.uk/support/shopping.html.

Read about more Friends’ activities and ideas for your ownfundraising at our website www.meresearch.org.uk/support

MERUK in the MediaWe’ve made quite a fizz in the past 6 months.

Children’s study media coverageThe publication of the University of Dundee’s scientific study of children with ME/CFS(see page 8 of this issue) got extensive publicity. On 7th September, things kicked offwith Prof. Jill Belch on the BBC Radio 4 Today programme, and continued throughoutthe day with regular items on BBC News, BBC World Service and BBC Radio regionalbroadcasts, with ITV taking up the cudgels later in the day. At the same time, a plethoraof items appeared across the Internet — on BBC Health, Top News Network USA,WebMD Health News, Scottish Television, UKwired News and Pharmaceutical Live. Thereafter, the printed media covered the story widely on 8th September. TheTimes kicked off with a half-page “Study proves that the illness is not psychological”,and there were items in the Herald De Paris, Daily Mail Online, Nursing times, theScotsman, the Los Angeles Times, and an editorial in the Lancet.

Broadcasts on Real RadioReal Radio is part of one of the country’s largest radio stations, and operates across theUK. For a week from the 16th to 20th August, we had a series of 40-second advertshighlighting five different cases of ME (one each day) and the need for research into theillness. For example, Wednesday’s case described “31 year old Liz was teaching biology ina high school when she got a viral infection and become so ill she was off work for fivemonths… That was 24 years ago…” These broadcasts have been very well received,raising awareness of the reality of living day-to-day with ME.

Herald Scotland Opinion PieceA 600-word opinion piece by Dr Neil Abbot, “Why we need to start treating ME muchmore seriously”, was published in the Herald newspaper on 27th July 2010, and can beread on-line.

If you think your story would make a good subject for similarprogrammes and would be happy speaking about your case tothe media, please let us know — we’d love to hear from you

Documents

Breakthrough Autumn 2010