Category: ME Research UK

New evidence that ME, CFS in children could be caused by a virus

A University of Dundee study on children has found further evidence that ME, or Chronic Fatigue Syndrome, could be caused by a virus. 


Additional reporting will be added to the top 

Media Coverage

Scottish Daily Record  |  Lachlan Mackinnon  | 8 September 2010

Chronic fatigue syndrome may be caused by virus, Scottish researchers find


Radio Scotland  |  Jane Colby  |  7 September 2010

Pick up around 11.00 in from start


WebMD Health News  |  Peter Russell  |  7 September 2010

Health news

Study links ME to virus
A small-scale investigation has found evidence that the debilitating illness could be caused by a virus

Reviewed by Dr Keith David Barnard


BBC News 7th September 2010: “Study shows ME/CFS ‘virus link’ found in children”  [Extracts already posted below]

BBC Health TV Report 7th September 2010: ME ‘could be caused by a virus’

BBC Radio 4 7th September 2010: Item on Today Programme

UKwired 7th Septemebr 2010: Study shows ME/CFS ‘virus link’ found in children


ME Research UK

Abstract and commentary also available on MERUK site

Comment by ME Research UK [note this commentary is heavy with links, please refer to site for links]

Illness in youngsters has a particular poignancy; the transformation of a bright, active child into one who is unable to go to school or play with friends is something that touches us all.

Estimates of the numbers of children affected by ME/CFS vary, but with prevalence figures of 60 to 70 cases per 100,000, it is likely that around 9,000 people under the age of 16 in the UK have this diagnosis. As the report to the Chief Medical Officer in 2002 made clear, this illness “represents a substantial problem in the young” and “potentially threatens physical, emotional, and intellectual development of children and young people, and can disrupt education and social and family life, at a particularly vulnerable time of life”.

The results of a previous study on quality of life in children with ME/CFS were recently published in Pediatrics by Dr Gwen Kennedy at the Vascular and Inflammatory Diseases Research Unit in the University of Dundee. In parallel with this work, Dr Kennedy and her colleague Dr Faisel Khan have been investigating biochemical and vascular abnormalities in children with the disease, and their results have just appeared in the US journal Archives of Pediatrics and Adolescent Medicine.

The Dundee group had previously reported a number of biochemical and vascular abnormalities in adults with ME/CFS. These mainly involve the immune and cardiovascular systems, and include an increase in the programmed death (apoptosis) of white blood cells, raised levels of oxidative stress which can damage blood vessels and other organs, increased markers of inflammation, and abnormalities in blood vessel function. All of these are potentially associated with a future risk for cardiovascular problems such as heart disease and stroke.

Drs Kennedy and Khan wanted to investigate whether these abnormalities were also present in children with ME/CFS, given the potential long-term consequences for cardiovascular risk. Risk factors such as high cholesterol and increased blood pressure, which are usually associated with adult diseases, have also been found in children and can progress into adulthood as hypercholesterolaemia and hypertension, so it is important that risks are identified as early in life as possible.

Twenty-five children with ME/CFS (all between the ages of 10 and 18 years) and 23 healthy children matched for age, gender and stage of puberty were recruited from throughout the UK. The diagnosis of ME/CFS had been made according to a revised version of the CDC-1994 case definition, and was confirmed by the researchers from a clinical examination.

A blood sample was taken from each child (using an anaesthetic cream to minimise their discomfort), and this was then subjected to a battery of tests in Dr Kennedy’s laboratory. The child’s blood pressure was measured, and then the pulse at their wrist was detected using a special pen-like probe applied lightly to the skin. This records the fluctuations in pressure as each pulse travels along the artery, and is exactly what you feel with your finger when you take your own pulse. This recording of the pulse is then analysed on a computer to give information on how flexible the artery is, which gives an indication of its health and function.

Overall, compared with healthy control children, the young people with ME/CFS had:

1.Higher levels of oxidative stress, manifested as elevated levels of isoprostanes
2.Reduced levels of vitamins C and E
3.A greater percentage of white blood cells undergoing apoptosis
4.A trend towards increased arterial stiffness, although this was not statistically significant

As Dr Kennedy points out, the increased oxidative stress may be due to a deficiency of antioxidants in the diet (such as vitamins C and E, found to be reduced in this study). However, she feels it is more likely to have been caused by white blood cells releasing an excessive amount of highly reactive free radicals, possibly from exercising muscle. This would tie in with the finding of increased white cell apoptosis, and Dr Kennedy has previously reported increased oxidative stress following exercise in adults with ME/CFS. She does emphasise, however, that more studies, perhaps including an assessment of diet, are needed to determine this mechanism.

The increased apoptosis (or programmed cell death) may be caused by a number of factors, including a persistent viral infection or toxic agent, or an abnormal immunological response. This finding is particularly intriguing given that many patients, including most children in this study, report that their disease started following a viral infection of some kind. At present, however, there is insufficient evidence to make a causal link between infection and increased apoptosis, though the finding is tantalising.

Although there were no other statistically significant changes in the children with ME/CFS, there was a clustering of markers such as arterial stiffness and cholesterol that showed small changes which may indicate the possibility of future cardiovascular risk. This type of clustering has been shown before in healthy children and in young people with diabetes. Although it should be stressed that children with ME/CFS are at no immediate risk of developing cardiovascular problems, we might expect these changes to become greater (closer to the adult pattern) as the children grow older and have been ill for longer.

Dr Kennedy and her team conclude their report by saying that the findings show that many children with ME/CFS “have an underlying, detectable abnormality in the behaviour of their immune cells, consistent with an activated inflammatory process”, and provide evidence of “a persistent or reactivating viral infection triggering apoptosis of white blood cells with an increased production of free radicals”.

It is important that these abnormalities have now been recognised in children with ME/CFS. To date, aside from symptomatic treatments, no specific therapy is available for children or adults with ME/CFS. Based on these and other biomedical findings in the disease, putative therapies could perhaps include both pharmacological and non-pharmacological strategies (to treat dysautonomia, for example), or antioxidant or antiviral interventions.

Co-funders of the study
ME Research UK funds biomedical research into ME/CFS with the aim of finding the cause of the illness and developing effective treatments. It funds the work of a growing number of scientists in the UK and worldwide, and to date has invested over £600,000 to support biomedical research. We are particularly grateful to the ME organisations which have provided larger donations to help us fund specific projects, details of which including some of the resulting scientific papers can be found on our research pages.

The Young ME Sufferers (Tymes) Trust, one of the major co-funders of the study at the University of Dundee, is the longest established national UK service for children and young people with ME and their families. A well-respected national charity, which recently won the Queen’s Award for Voluntary Service, its entire professional team give their time free of charge. It runs an Advice Line, provides access to ME experts for doctors, teachers and social workers, and produces a magazine for children, families and professionals. The Trust played a major role in producing the children’s section of the Department of Health Report on CFS/ME (2002). It promotes interactive virtual education for children with ME, and provides the Tymes Trustcard — a pass card for children in school, endorsed by the Association of School and College Leaders. More information on the Tymes Trust and its work can be obtained at its website.

Search ME, based in Rosyth, Fife, was founded in 2002. Its aims are to improve the lives of people with ME and to provide them with a voice on the Cross Party Group for ME in the Scottish Parliament. The charity has raised the bulk of its donations through organising Rock and Pop Concerts. Search ME became an early supporter of the study at the University of Dundee and helped fund the work carried out there. Members of the charity are very proud of the work carried out at Dundee and of all the people involved. Further information can be found on their website.

Tenovus Scotland has funded world class cancer research across the UK for over 40 years, providing a vital link by funding pilot studies which can attract further support from major funding bodies such as the Wellcome Trust, the MRC, Cancer Research UK, the British Heart Foundation and many others. Further information can be found at its website.


Vol. 164 No. 9, September 2010  |  Journal of Archives of  Pediatriatrics & Adolescent Medicine 

Biochemical and Vascular Aspects of Pediatric Chronic Fatigue Syndrome
Gwen Kennedy; Faisel Khan; Alexander Hill; Christine Underwood; Jill J. F. Belch
Arch Pediatr Adolesc Med. 2010;164(9):817-823.
ABSTRACT | FULL TEXT | PDF  [Free Abstract, Payment required for full paper] 


Biochemical and Vascular Aspects of Pediatric Chronic Fatigue Syndrome
Gwen Kennedy, PhD; Faisel Khan, PhD; Alexander Hill, PhD; Christine Underwood, MBBS; Jill J. F. Belch, MD 

Arch Pediatr Adolesc Med. 2010;164(9):817-823. doi:10.1001/archpediatrics.2010.157   

Objective To evaluate the biochemical and vascular aspects of pediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). 

Design Cross-sectional clinical study. 

Setting Tayside, Scotland, United Kingdom. 

Participants Twenty-five children with CFS/ME and 23 healthy children recruited from throughout the United Kingdom. 

Interventions Participants underwent a full clinical examination to establish a diagnosis of CFS/ME and were asked to describe and score their CFS/ME symptoms. Biochemical markers were measured. Arterial wave reflection was estimated to assess systemic arterial stiffness. 

Main Outcome Measures Markers of oxidative stress and free radicals, C-reactive protein level, white blood cell apoptosis, and arterial wave reflection. 

Results Children with CFS/ME had increased oxidative stress compared with control individuals (isoprostanes: 252.30 vs 215.60 pg/mL, P = .007; vitamin C, mean [SD]: 0.84 [0.26] vs 1.15 [0.28] mg/dL, P < .001; vitamin E, 8.72 [2.39] vs 10.94 [3.46] µg/mL, P = .01) and increased white blood cell apoptosis (neutrophils: 53.7% vs 35.7%, P = .005; lymphocytes: 40.1% vs 24.6%, P = .009). Arterial stiffness variables did not differ significantly between groups (mean augmentation index, –0.57% vs –0.47%, P = .09); however, the derived variables significantly correlated with total (r = 0.543, P = .02) and low-density lipoprotein (r = 0.631, P = .004) cholesterol in patients with CFS/ME but not in controls. 

Conclusions Biomedical anomalies seen in adults with CFS/ME—increased oxidative stress and increased white blood cell apoptosis—can also be observed in children with clinically diagnosed CFS/ME compared with matched controls. Unlike in their adult counterparts, however, arterial stiffness remained within the reference range in these pediatric patients. 

Author Affiliations: Vascular and Inflammatory Diseases Research Unit, The Institute of Cardiovascular Research, Centre for Cardiovascular and Lung Biology, Division of Medical Sciences, Ninewells Hospital and Medical School, Dundee, Scotland, United Kingdom. 


Additional papers and Editorial in current edition: 

Adolescent Chronic Fatigue Syndrome: A Follow-up Study
Stefan M. van Geelen; Rob J. Bakker; Wietse Kuis; Elise M. van de Putte
Arch Pediatr Adolesc Med. 2010;164(9):810-814.
ABSTRACT | FULL TEXT | PDF  [Free Abstract, Payment required for full paper]


Adolescent Chronic Fatigue Syndrome
A Follow-up Study

Stefan M. van Geelen, MPhil; Rob J. Bakker, MD; Wietse Kuis, PhD, MD; Elise M. van de Putte, PhD, MD

Arch Pediatr Adolesc Med. 2010;164(9):810-814. doi:10.1001/archpediatrics.2010.145

Adolescent Chronic Fatigue Syndrome
A Follow-up Study

Stefan M. van Geelen, MPhil; Rob J. Bakker, MD; Wietse Kuis, PhD, MD; Elise M. van de Putte, PhD, MD

Arch Pediatr Adolesc Med. 2010;164(9):810-814. doi:10.1001/archpediatrics.2010.145

Objective To describe the symptomatic and educational long-term outcomes, health care use, and risk factors of nonrecovery in adolescent chronic fatigue syndrome (CFS).

Design Follow-up study.

Setting Academic pediatric hospital.

Participants Sixty adolescents with CFS.

Interventions Regular care.

Outcome Measures The Checklist Individual Strength, Child Health Questionnaire, and a general questionnaire regarding further symptoms, school attendance, work attendance, and treatment.

Results Complete measurements were returned for 54 adolescents (90%). At initial assessment, their mean (SD) age was 16.0 (1.5) years and 20.4% were male. The mean follow-up duration was 2.2 years. At follow-up, the mean (SD) age was 18.2 (1.5) years; 28 adolescents (51.9%) had nearly complete improvement of symptoms but 26 (48.1%) did not experience improvement. Adolescents who attended school (n = 41) had missed an average of 33% of classes during the last month. The rest (n = 13) had worked an average of 38.7% of a full-time job during the last month. A total of 66.7% of subjects were treated by a physiotherapist, 38.9% were clinically treated in rehabilitation, 48.1% had received psychological support, and 53.7% had used alternative treatment.

Conclusions About half of the adolescents had recovered from CFS at follow-up. The other half was still severely fatigued and physically impaired. Health care use had been high, and school and work attendance were low. Older age at inclusion was a risk factor, and pain, poor mental health, self-esteem, and general health perception at outcome were associated with an unfavorable outcome. Future research should focus on customizing existing treatment and studying additional treatment options.

Author Affiliations: Department of Pediatrics, University Medical Center Utrecht, Utrecht, the Netherlands.

Postinfectious Fatigue in Adolescents and Physical Activity
Yue Huang, PhD; Ben Z. Katz, MD; Cynthia Mears, DO; Gary W. Kielhofner, DrPH; Renée Taylor, PhD

Arch Pediatr Adolesc Med. 2010;164(9):803-809.doi:10.1001/archpediatrics.2010.144



Objective To compare adolescents who do and do not recover from acute infectious mononucleosis in terms of fatigue severity and activity levels before, during, and in the 2 years following infection.

Design Prospective case-control study.

Setting The baseline and 12- and 24-month evaluations occurred in the subjects’ homes. The 6-month outpatient visit occurred at Children’s Memorial Hospital in Chicago, Illinois.

Participants  Three hundred one adolescents (aged 12-18 years) with acute infectious mononucleosis.

Main Exposures All participants were evaluated at baseline (during active infection). Six months following infection, 39 of them met criteria for chronic fatigue syndrome. These subjects were matched by sex and Tanner stage to 39 randomly selected screened-negative subjects. Both groups were reevaluated at 12- and 24-month follow-ups.

Outcome Measures Scores from the Fatigue Severity Scale and the Modifiable Activity Questionnaire.

Results  For both groups, physical activity levels declined and sleep increased as a result of having mononucleosis. Compared with their matched controls, adolescents with chronic fatigue syndrome reported significantly higher levels of fatigue at all points and spent significantly more time sleeping during the day 6 and 12 months following infection. The 2 groups did not differ significantly in terms of physical activity levels before, during, or after infection. There was a consistent trend for decreased physical activity in the chronic fatigue syndrome group.

Conclusions Adolescents with chronic fatigue syndrome appear to be pushing themselves in an attempt to maintain similar activity levels as their peers, but paying for it in terms of fatigue severity and an increased need for sleep, particularly during the day.

Author Affiliations: Department of Occupational Therapy, College of Applied Health Sciences, University of Illinois at Chicago (Drs Huang, Kielhofner, and Taylor); and Department of Pediatrics, Northwestern University Feinberg School of Medicine and Children’s Memorial Hospital (Drs Katz and Mears), Chicago, Illinois.

Editorial Vol. 164 No. 9, September 2010

Full Text

Chronic Fatigue Syndrome in Adolescence: Where to From Here?
Arch Pediatr Adolesc Med.2010; 164: 880-881. 

Extract Editorial [First 150 words]   

Chronic Fatigue Syndrome in Adolescence: Where to From Here?
Extract | Full Text 

Ute Vollmer-Conna, PhD 

Arch Pediatr Adolesc Med. 2010;164(9):880-881. doi:10.1001/archpediatrics.2010.149 

Since this article does not have an abstract, we have provided the first 150 words of the full text and any section headings. 

Chronic fatigue syndrome (CFS) is a disabling disorder that poses a significant personal and economic burden for patients, their families, and the community. It is increasingly recognized that CFS is prevalent in children and adolescents.1-2 In the young, the disability associated with CFS can be exacerbated by the effect of the illness on emotional and social aspects of development including social learning, autonomy, a sense of self, a healthy body image, relationships, sexuality, and academic development.3 

After decades of hypothesis-driven research, the etiology and pathophysiology of CFS remains obscure, and curative therapies are not available. What have we learned from this poor outcome? For one, many now agree that the diagnostic label of CFS encompasses a heterogeneous group. This is supported by evidence from several studies (including one pediatric study2) showing that 3 to 5 distinct subclasses can be delineated from large, cross-sectional samples of individuals . . . [Full Text of this Article]  [Payment required] 


School of Psychiatry, University of New South Wales, Sydney, Australia 


BBC  |  BBC Scotland Health Correspondent  |  7 September 2010  

Study shows ME/CFS ‘virus link’ found in children 

By Eleanor Bradford 

A study on children has found further evidence that ME, or Chronic Fatigue Syndrome, could be caused by a virus. 

Scientists at the University of Dundee study found abnormalities in the white blood cells of children with ME/CFS, suggesting they had been fighting off infection… 

…In the study, funded by ME Research UK and The Young ME Sufferers (Tymes) Trust, 25 children aged between seven and 14 with ME/CFS were assessed, along with 23 children of a similar age in a control group. 

The report, published in the Archives of Paediatrics and Adolescent Medicine, said abnormalities were found in the blood of all the children with ME/CFS. 

The results were similar to those previously identified in adults with the condition. 

Samples taken from youngsters with ME/CFS contained higher than normal levels of free radicals – molecules that can damage cells, tissues and organs… 

Read full article here 


From Jane Colby  |  The Young ME Sufferers Trust  |  7 September 2010 


There should be quite a bit of coverage today of the new research in children, which The Young ME Sufferers Trust co-funded. I’ve done Radio 5 Live and BBC Northern Ireland radio so far.  BBC Wales coming up. Prof Jill Belch has done interviews about the science for a number of channels. 

I wasn’t able to say anything about this yesterday due to reporting restrictions. Will send out an Alert about the research later today. 

Jane Colby
Executive Director
The Young ME Sufferers Trust
PO Box 4347
Stock Ingatestone
Essex CM4 9TE
Tel 0845 003 9002

Text version: Review of Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Text version of Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas

Shortlink to this posting:


For the Word file of this document and related information go here:

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk



Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

By Chris Douglas

27 August 2010


In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.

It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.

The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.

1. Scope
2. Objectives
3. Service Provision Model
4. Funding
5. Conflicts of Interest

1. Scope

1.1. Geographic Scope

The scope of a proposal has direct bearing on project objectives and methodology and provides a framework within which the project can be assessed.

In the current proposal, it is unclear whether the Centre is aimed at servicing the Norfolk region only or the UK as a whole (which, presumably, would include Scotland and Northern Ireland). For example, there is reference to a “national centre of excellence for ME” whilst also discussing East Anglia as being a ‘region of opportunity’.

In particular, it is unclear whether there is a distinction in national and regional service provision between the separate clinical and research facilities detailed in the proposal (and located in Norfolk and Norwich University Hospitals, and the University of East Anglia/Norwich Research Park respectively).

If the clinical service is intended to be national, the following questions arise.

Why has Norwich been selected as a location (given that it has poor logistical accessibility for the rest of the country)?
Have other geographic locations and facilities been considered?
If so, how has their suitability been assessed and by whom?

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For both a national and regional remit, the following questions arise for the clinical service.

Why have Norfolk and Norwich University Hospitals (N&NUH) been selected to host the Centre’s clinical facility?
What specific types and levels of expertise would N&NUH bring to the Centre?
Does N&NUH health care staff have the capabilities and infrastructure to deliver the proposed service and, if not, how would this be addressed?
Have other facilities been considered?
If so, how has their suitability been assessed and by whom?

For a national and/or regional remit, the following questions arise for the research service.

What is the rationale for selecting the University of East Anglia/Norwich Research Park (UEA/NRP) to run the Centre’s research programme?
Has the UEA/NRP submitted a formal proposal for hosting the research programme?
If so, who has assessed this and how has it been assessed?
Have other research facilities been asked to submit proposals?
If so, who has assessed these and how have they been assessed?

The distinction between a national and regional service is further confused by the assumption that the Centre’s ‘translational’ model can be achieved only where the clinical and research services share the same geographic location.

The rationale for this assumption is unclear and, indeed, is contrary to the existing health care provision framework in the UK which operates through a countrywide network of medical facilities within (or co-ordinated by) the National Health Service (NHS).

1.2. Disease Scope

The document uses the nomenclature ‘ME’ (myalgic encephalomyelitis) to describe the condition that it intends to cover although there are further associated illnesses that overlap with ME and, indeed, may actually be the same disease (e.g. fibromyalgia, atypical MS, atypical lupus).

In addition, the UK medical profession uses other terms to describe ME, including Post Viral Fatigue Syndrome (PVFS), Chronic Fatigue Syndrome (CFS) and even just chronic fatigue.

The UK medical profession also lacks clarity and consistency in disease definition and diagnosis, an issue which, as pointed out in the proposal, can lead to patients being diagnosed incorrectly (either as having ME when they do not or not having ME when they do).

To avoid the considerable confusion and inaccuracy of existing nomenclature, definition and diagnosis, it may be preferable to adopt the term ‘neuroimmune disease’, as used by the US Whittemore Peterson Institute (WPI) which the proposal states is a role model for the Centre.

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This may also avoid the potential confusion between the Centre of Excellence and existing NHS ME/CFS Centres (referred to in the proposal) which attract criticism for, amongst other things, their lack of biomedical intervention and focus on occupational and behavioural therapies.

In addition, this would provide a platform for further research into the human gammaretrovirus (HGRV) family which has been linked with ME and is the current focus of the WPI. The current proposal does not make reference to this retrovirus and this would seem an oversight given (a) the growing scientific interest in this area and (b) that donors to IiME’s Biomedical Research Fund approved support of the WPI’s UK study of HGRVs. It is also highly relevant for diagnostic purposes (a key focus of the proposal) given the likelihood that HGRVs will become, at very least, a biomarker for ME.

2. Objectives

Successful projects are underpinned by objectives which are specific, quantified, achievable and measurable.

The current proposal omits specific, quantified objectives or project ‘deliverables’, possibly because these are difficult to define given the lack of a precise scope.

Once the scope has been clarified, it may help to establish an overarching mission, a set of objectives and a timeline for implementation.

Given that this is a start-up project with a limited budget (see 4. Funding), it may be prudent to begin with a limited remit that can be met within a short lead-time and then used as a basis from which to develop more ambitious plans.

An example clinical mission would be: ‘To translate international biomedical research findings and therapies into clinical treatments for patients in Norfolk.’

Clinical objectives could include:

– to diagnose and treat x number of patients over time period y
– to deliver xx% improvement in patient health and well-being over time period y
– to train x number of N&NUH doctors in the diagnosis and treatment of ME over time period y

An example research mission would be: ‘To implement research programmes that complement and support those of the WPI.’

Research objectives could include:

– to complete x number of studies (by specified type) over time period y
– to replicate/validate findings of research study z
– to test the efficacy of treatments a, b and c over time period y

The proposal lists eleven project benefits and certain of these could be classed as deliverables (e.g. domiciliary services) but would require greater detail based on a

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quantified top line objective (e.g. diagnosis and treatment of a specified number of housebound patients pa).

All objectives would require an accompanying plan for delivery and methods of measurement and assessment.

3. Service Provision Model

In the absence of specific and robust objectives to use as a benchmark, it is difficult to assess the potential outcome efficacy of the proposed service model although questions about operational efficiency can be raised at this stage.

The diagram in figure 1 is a graphic representation of the service provision model described in the proposal. The shaded organisations are those which, combined, form the Centre of Excellence.

Fig 1. Overview of assumed service provision model

The proposal describes this as a “simple but effective structure”, although it could be argued that the model is, actually, quite complex given the number of stakeholders and communication pathways that are involved.

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In addition, four separate organisations and geographic locations constitute the Centre of Excellence itself, which makes it a concept rather than a single entity, and so conflicts with the proposal’s underlying theme of a closely integrated operation.

The responsibilities of each of the organisations within the Centre are unclear from the proposal, as are how they will inter-relate and how communication and control will be managed.

In particular, the proposal requires more detailed explanation of the roles of Norfolk PCT and N&NUH, not only in terms of how they may provide patient services regionally and/or nationally, but also in terms of their potential model for other PCTs and hospital trusts to follow, as well as their operation within the NICE (National Institute for Health and Clinical Excellence) guidelines for treating ME.

The proposal states that “a new commissioning director at Norfolk PCT…is supporting the steering group’s views”. It would be helpful to name the individual in question and also include their input in detail.

The position of a ‘clinical biomedical lead consultant’ is mentioned and also that candidates have been approached for this role, although their remit and responsibilities, selection and measurement criteria, and reporting structure are not explained. Similarly, it is unclear how the ‘GPs with special interest’ who support the lead consultant will be identified, enrolled, trained and funded.

The proposal recognises the critical importance of training health care staff (and also mentions ‘visiting experts’) although it is unclear who will be responsible for training the N&NUH staff, which staff will be trained and how training will be implemented and monitored.

Staff training will be paramount to the Centre’s success, particularly given the NHS’ current dearth of biomedical knowledge about ME and its inappropriate and, sometimes, harmful treatment options for the disease (as per the NICE guidelines, mentioned above). IiME needs to demonstrate that the NHS’ long established and entrenched misunderstanding of ME can be corrected, and swiftly, if the Centre is to gain the confidence of patients and commitment of financial donors.

With specific reference to IiME’s involvement in the project, the proposal would benefit from more detailed explanation of the following.

For each of the three IiME entities (charity, limited company and steering group):

– role
– management structure
– governance
– overlap with the other two entities

For the charity and steering group specifically:

– members and/or trustees (other than the two named in the proposal)
– how members/trustees are appointed
– who appoints members/trustees
– to whom members/trustees are accountable
– how members/trustees are monitored

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For IiME Ltd specifically:

– when the company was/will be incorporated
– business classification and trading objectives
– share structure and ownership
– board members and responsibilities
– relationship with Norfolk PCT and N&NUH (given that the proposal refers to IiME Ltd supporting service commission by the former from the latter)

In addition, it would be helpful to understand how the Centre’s work might be integrated with that of other ME research organisations such as ME Research UK (currently funding a HGRV study in Sweden), the UK CFS Research Foundation (supporter of Dr Jonathon Kerr’s research for many years), as well as with its stated role model, the US WPI.

4. Funding

The proposal omits a top line funding requirement, a budget break-down and a cost-benefit analysis for the project.

Norwich local newspaper, EDP24, has stated: “Discussions will be going on over the next few months and once a decision has been made, funding will begin to the tune of £150,000 a year.”²

This amount seems low in the context of the proposed service provision model and particularly in comparison to the Center for Molecular Medicine (home of the WPI at the University of Nevada) which cost $77 million to establish.

The proposal states that funding for research would be “organised and provided by the charity and the UEA” although there is no further detail of how this would be supported nor who would fund the clinical element.

As a consequence, the following information remains to be confirmed.

The estimated cost (overall and breakdown) of establishing and maintaining the Centre over a given time period (for example, five years).

The share and source of funding to be provided by each of the organisations involved in the Centre.

How the funds will be raised by each of the contributing organisations.

Methods for monitoring expenditure, measuring outcomes and reporting to fund contributors.

For those funds raised via IiME (the charity), whether donors will contribute to the Centre as a whole or to specific research and/or clinical projects.

For IiME (the charity), the share of funding to be sourced via the following:

– general donations to the charity;
– profits from sale of IiME’s annual conference DVD;

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– donations to IiME’s Biomedical Research Fund;
– donations to a separate Centre specific fund.

•  Whether, after completion of the WPI’s UK study, any residual monies in IiME’s Biomedical Research Fund will be transferred to the Centre or remain in the Fund for further research projects, and whether donors’ approval will be sought for either course of action (as per the precedent set when monies were reallocated from Dr Kerr’s withdrawn research to the WPI’s UK study).

5. Conflicts of Interest

Fund donors may wish to see further explanation for, and clarification of, the following potential conflicts of interest.

Dr Ian Gibson’s involvement in this project will raise concerns with those who did not welcome his unofficial ‘Gibson Inquiry’ into ME (as referenced in the proposal) and the subsequent uncorrected ‘e-report’ which was published in October 2006³. There were significant criticisms of the way that Dr Gibson and his panel undertook this inquiry (which was a personal project and not a formal Parliamentary Inquiry or Report), such as the involvement of Lord Turnberg, a known supporter of cognitive behavioural therapy (CBT) and graded exercise therapy (GET), and the absence of proper consultation with the inquiry’s constituency of interest at all stages throughout the life of the project. Previously a Labour backbencher, Dr Gibson was barred from standing for the party in the 2010 general election following questions about his ministerial expenses.

Dr Fiona Poland of UEA’s Institute of Health and Social Science Research is working in partnership with Action for ME (AfME) and a network of universities on part of a major ME research project sponsored by the Big Lottery Fund (i.e. reporting and developing early findings on the impact of the illness and available means of support). The association between UEA and AfME will raise concerns with a growing number of patients who openly criticise the latter’s role, agenda and efficacy, particularly in terms of its apparent unwillingness to support biomedical ME research and to challenge the psychosocial paradigm.

The Norwich Research Park is a joint venture between the UEA, and amongst others, the Sainsbury Laboratory which, in turn, is supported by the UEA and the Gatsby Foundation. The Gatsby Foundation is one of a number of Sainsbury Family Charitable Trusts which share the same administrators and counsels. This includes the Linbury and Ashden Trusts which have provided funding for the RNHRD NHS FT, Bath (the ‘Min’) and the University of Bristol’s controversial trial of the Lightning Process on children and for which IiME has stated its public opposition.

The Institute for Food Research (IFR) and The Genome Analysis Centre (TGAC) are institutes of the Biotechnology and Biological Sciences Research Council (BBSRC). The BBSRC grant-aids the John Innes Centre (based in Norwich Research Park) which hosts the Sainsbury Laboratory and the TGAC. BBSRC is one of seven Research Councils that work together as Research Councils UK (RCUK). It is funded from the Government’s Department for Business, Innovation

Page 8

and Skills (BIS). This is a complex organisational structure which makes it difficult to achieve transparency in funding governance and also to identify potential conflicts of interest.

It is unclear from the proposal whether ME support groups in the Norfolk region (or nationally, if the scope is such) are involved in this project and the degree to which they have provided input and support. It is also unclear whether there has been any wide-scale patient consultation for this project or if any is planned in the future.


1 Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk August 2010
‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’

2 EDP24 “Norwich centre for ME sufferers planned” 03.08.10



Chris Douglas is an ME sufferer and ex-corporate project manager.

© Chris Douglas 2010

Review of Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas

Shortlink to this posting:


At the 5th Invest in ME International ME/CFS Conference held in May, this year, a proposal was announced for the establishing of a “Centre of Excellence for ME” in Norfolk. To the best of my knowledge, Invest in ME had undertaken no national consultation with ME patients before drawing up its proposals.

Today I am publishing a review of Invest in ME’s proposal prepared by Chris Douglas.

A text version of this review is published in the next post.


Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

By Chris Douglas

27 August 2010


In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.

It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.

The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Open Word document here: Norfolk Proposal Review 27.08.10

A text version of this Word document is published in the next post


Related information

Invest in ME

“Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.”

Invest in ME is constituted as a Trust, registered with the Charity Commission and run by a committee of three Trustees/Directors. Invest in ME is not a membership organisation. The organisation was founded in 2006 by carers and patients, Sue Waddle, Richard Simpson and Kathleen McCall (current chair). Ms Waddle has since stood down as a Trustee.

Invest in ME

A UK Centre for Biomedical Research into ME

Read the announcement here

The Research Proposal published by Invest in ME in July can be read here in PDF format:

       Biomedical Research Institute Proposal July 2010

“A New Era in ME/CFS Research 

“An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis”


“Recent biomedical research and advances in knowledge and treatment regarding Myalgic Encephalomyelitis have brought more urgently needed awareness of this disease. In the East Anglian region of UK an opportunity now exists to bring real benefit to patients and establish a unique capability which will attract attention and recognition from across UK and Europe.”


Media coverage

Great Yarmouth Mercury

Hopes for ME centre in Norfolk raised

31 August 2010

“…The independent charity will carry out the official campaigning for funding for the centre once a formal agreement is made.

“Now the charity has offered to send some of the UEA researchers to a biomedical research symposium in Australia at the end of the year.

“Mr Simpson said: “This would involve them discussing work with the top ME researchers and clinicians in this field from around the world.

“Discussions are under way, and we are really hopeful this will move things forward. The centre could change the lives of patients with ME. Early diagnosis is so important, and this centre would help establish that.’

“The charity is also planning to organise a conference in Norwich with the UEA and the Norfolk and Norwich University Hospital and is lining up discussions with the US Whittemore Peterson Institute, an institute for neuro-immune disease in Nevada that helps thousands of people with ME through research, scientific developments and treatment…”


Norwich Evening News

Plans for world class Norfolk centre

Sarah Hall  |  27 August 2010


Environmental Illness Resource Blog

UK to get WPI Inspired Chronic Fatigue Syndrome Research and Treatment Centre

News – Chronic Fatigue Syndrome News

Matthew Hogg  |  13 August 2010



Norwich centre for ME sufferers planned

Sarah Hall  |  3 August 2010

Action for M.E. issues second position statement on Lightning Process pilot in children 8 to 18

Action for M.E. issues second position statement on Lightning Process pilot in children 8 to 18


Action for M.E. Second position statement

20 August 2010

Issued via Action for M.E. Facebook Wall

Action for M.E. is very concerned that the Lightning Process is being given to children in the UK without having been formally evaluated for effectiveness and safety.

Although the MRC ethics guide says that research involving children should only be carried out if it cannot feasibly be carried out on adults, there are exceptions eg. studies which aim to increase understanding of child health or shed light on a disease, its natural history and possibilities of prevention.

Before any research is approved, an ethics committee scrutinises the proposals to ensure that the rules about research involving children are satisfied. The committee also ensures that proper safety systems are in place and include safety monitoring by an independent committee.

As long as the ethics committee gives its approval, the charity supports proposals to investigate whether it is possible to set up a controlled trial to look at the Lightning Process and how it compares with current treatments for M.E./CFS in children.

Dr Esther Crawley is a Consultant Paediatrician specialising in CFS/M.E. and a leading researcher in the field. Together with Dr Margaret May and Dr Alan Emond, Dr Crawley has recently published new research on phenotypes of CFS/M.E. in children in the journal Archives of Disease in Childhood.

They showed that there appear to be three different phenotypes: musculoskeletal (the main symptoms being muscle and joint pain), migraine and sore throat. None of the phenotypes were associated with age or length of illness suggesting that they did not merely reflect deconditioning. The lack of association with symptoms of depression or anxiety (with the exception of the migraine phenotype) also suggests that they are unlikely to reflect mood disorders.

At the end of March, Action for M.E.* had published this position statement on its Facebook Wall but not on its main website:

Action for M.E. sees no reason to oppose this pilot study.

As was made clear when it was announced, the research at this stage is simply a pilot designed to see if it would be possible to set up a trial that can independently assess the Lightning process against specialised medical care.

It is a fact that many parents are already taking their children to LP practitioners and so there are urgent questions that need to be addressed in order to assure the safety of those children. Dr Crawley’s initiative aspires to find a way of answering some of those questions.

*Sir Peter Spencer, CEO of Bristol based, Action for M.E., is a non-executive director of the Royal National Hospital for Rheumatic Diseases, NHS Foundation Trust – Dr Esther Crawley’s employer.

Summary ME Association Board of Trustees meetings 14, 15 June 2010

Summary of ME Association Board of Trustees meetings 14 and 15 June 2010


ME Association  |  17 June 2010

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees.

These meetings took place at our Head Office in Buckingham on Monday afternoon, June 14th and on Tuesday morning, June 15th 2010.

This is a summary of the Board meetings – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

MEA website:



Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman

MEA Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager


Rick Osman (RO)
Janet Thomas (JT)


ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of April 2010. There has been a drop in some areas of income during the past few months when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is currently running slightly ahead of unrestricted income.

However, income from fundraising has shown a significant and welcome increase over the same period in 2009 and in order to cope with the increased demand on fundraising support services it was decided to create a new part-time post to deal with fundraising administration with immediate effect. Details about this new post will be placed on the MEA website when trustees have agreed the job description.

There has also been a significant increase over the past twelve months in the ring fenced funding held by the Ramsay Research Fund for research purposes.

Trustees once again reviewed the current ‘best buys’ for interest-gaining options in relation to money kept in the business and Ramsay Research Fund deposit accounts.

The new computer equipment for Head Office staff is now fully installed and working in a satisfactory manner. GB reported that a few minor problems have still to be resolved.

Trustees discussed some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.

Trustees passed on best wishes to Lucy Kingham, at Head Office, who will be taking maternity leave in October.


Trustees held a further discussion on the future growth of the MEA. This work includes looking at areas of priority for expansion of the services we already provide and new services that we would like to provide if/when the financial situation allows us to do so. Continue reading “Summary ME Association Board of Trustees meetings 14, 15 June 2010”

Telegraph: Letters to the Editor: Breaking the ME enigma (jointly signed by ME spokespersons)

Telegraph: Letters to the Editor: Breaking the ME enigma (jointly signed by ME spokespersons)


Telegraph  |  06 February 2010

Breaking the ME enigma

SIR – The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.

Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.

Such lack of understanding even extends to blaming parents for the severity of their child’s illness.

It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.

Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale’s fate.

Countess of Mar
Secretary, All Party Parliamentary Group on ME
Dr Neil Abbot
Operations Director, ME Research UK
Jane Colby
Executive Director, The Young ME Sufferers Trust
Anne Faulkner
Hon Director, CFS Research Foundation
Tanya Harrison
Chairman, BRAME
Malcolm Hooper
Emeritus Professor of Medicinal Chemistry, University of Sunderland
Andy Kerr MSP
Dr Jonathan Kerr
Consultant Senior Lecturer, St George’s, University of London
Simon Lawrence
Chairman, 25 per cent ME Group
Kathleen McCall
Chairman, Invest in ME
Dr Luis Nacul
Consultant in Public Health, London School of Hygiene and Tropical Medicine Professor
Derek Pheby
National ME/CFS Observatory
Neil Riley
Chairman, ME Association
Dr Charles Shepherd
Dr Nigel Speight
Sir Peter Spencer
Chief Executive Officer, Action for ME
Des Turner MP
Chairman, All Party Parliamentary Group on ME
Dr William Weir
Mary-Jane Willows
Chief Executive Officer, Association of Young People with ME
Andrew Stunell MP
Vice Chairman, All Party Parliamentary Group for ME

Times: ‘Doctors, school, friends thought I was faking chronic fatigue syndrome’ 25 Jan 09

Times section Times2 Health: ‘Doctors, school, friends thought I was faking chronic fatigue syndrome’


[The right hand side of this double spread, which includes a large photo of Ms Warner, sits alongside a Dr Mark Porter piece on euthanasia and the recent Inglis legal case.]


January 25, 2010

‘Doctors, school, friends thought I was faking chronic fatigue syndrome’

As the trial of Kay Gilderdale puts ME back in the spotlight, we ask why more is not being done to help sufferers

It says a lot about the public perception of myalgic encephalomyelitis (ME) that it is a surprise to find that Nicola Warner is lively, positive and talks a lot. That’s the initial impression anyway. It’s only when you spend a little time in her company that you notice a certain stillness or perhaps sadness in her face and it becomes obvious that she is not entirely well.

Nicola, now 27, was 12 when she became ill with glandular fever. A year later, having been bedridden for eight months, she was told by a paediatrician that she had ME. He gave her a factsheet that terrified her, she says. “It described my symptoms, the pain in my joints and my muscles, the overwhelming fatigue, dizzy spells, nausea, migraines, memory loss…I wanted to go back to school to be with my friends.”

On her first day back Nicola collapsed and had to be carried out of the lesson. That was her last day at school. The GP told her parents that if she didn’t get out of bed she would become paralysed. Every morning her mum helped her to walk the few steps from her bed to the bathroom in the family’s home in Theydon Bois, Essex. The first time, she took three hours.

“I couldn’t concentrate, couldn’t read or watch television, couldn’t have a conversation. So I couldn’t see my friends,” Nicola says. “It was incredibly lonely. Some people thought I was faking it — neighbours, friends, school, doctors. I wasn’t making it up, I wasn’t being lazy though I was isolated and depressed. It wasn’t a mental thing but because I wasn’t leading a normal life there were mental issues surrounding it.”

In recent days the trial of Kay Gilderdale, who has admitted assisting the suicide of her daughter, Lynn, an ME sufferer, but denies attempted murder, has raised the profile of the condition that has no known cause, no diagnostic test, no cure and few treatments. It is estimated that 250,000 people suffer from it in the UK, almost three times the number who have multiple sclerosis.

As Nicola discovered, ME has long been the butt of scepticism and it was only in 2002 that Sir Liam Donaldson, the chief medical officer, recognised it as a clinical condition. The Medical Research Council endorsed the view in 2003, the following year the Government allocated £8.5 million to develop 12 specialist centres across England and in 2007 NICE produced assessment and treatment guidelines.

Even so it has been hard to shift the suspicion that the condition is a malingerers’ charter and that it has a psychological basis, a proposition fiercely resisted over the years by vociferous campaigners. In the past their arguments were often emotional but today ME charities are more likely to refer the media to a relevant professional.

The ME community remains frustrated by studies that show that as many as 50 per cent of GPs don’t recognise the condition. Such is the hostility engendered by the debate that medical professionals who view ME as a psychiatric disorder declined to contribute to this article. “My views are too controversial to publish,” says one who believes that many patients develop ME, also known as chronic fatigue syndrome (CFS), in the context of work-related stress.

“It’s like a battlefield,” says Dr Neil Abbot, operations director of ME Research UK. He describes the lot of the ME patient as a “Kafkaesque nightmare”. “There isn’t any education on the illness in medical schools and the GP hasn’t got anywhere to go [for information].”

The scientific literature remains small: 2,500 articles over the past ten years compared with 20,000 for MS. What do we know about the condition? “It depends on what you mean by know,” Abbot replies. “There are thousands of individuals who are definitely ill. They think they have a physical illness and most of their families do too. Some are put in a box called ME/CFS, many aren’t diagnosed. The treatments on offer are psychologically based, such as cognitive behaviour therapy and graded exercise. They help some individuals to cope with the symptoms but they aren’t the answer. Our aim is to make people recognise that there is a biomedical problem to be addressed.”

Abbot estimates that a quarter of ME sufferers are housebound and some bedbound. Sue Waddle, a magistrate from Hampshire, looks after her daughter, Lauren, who became ill when she was 12 and has been “virtually bedbound” since she was 16. She is now 24, remains in pain, sensitive to noise and light, and leads an isolated life. “Her GP has prescribed different treatments as different parts of her body have failed,” says her mother. “We’ve had sympathy in the most part but I think doctors are frightened that you’re going to demand something they can’t give. Her quality of life is dreadful and, although it’s difficult to say, I can’t see her living a normal lifespan.”

Waddle is excited by last year’s Nevada study that linked the XMRV retrovirus to ME, even though this month a study by King’s and Imperial Colleges found no link. More trials are needed, and the Medical Research Council says that two or three further studies will be completed within three months, though it is possible that the virus is not causative but a passenger.

“If this link could be confirmed maybe there would be a treatment that would give my daughter a better quality of life,” Waddle says. “If I was a doctor or a scientist I would be asking what was wrong with Lynn Gilderdale and why was she allowed to rot in her room for 17 years without anyone being able to do anything about it? People who are severely affected by ME are terribly neglected.”

The ME community’s wish-list is summed up by Dr Charles Shepherd, the medical director of the ME Association. First, there is a need to find out how many people have the condition, because only then can their clinical abnormalities be assessed and effective health services planned. Second, there is a need for research, in particular into muscle abnormalities, the role of the immune response to infection, and the extent that common neural pathways are involved in chronic fatigue in ME and other illnesses such as Parkinson’s and MS. Third, there is a need for trials of potential treatments.

Shepherd points out that the impasse that surrounds ME is partly caused by the difficulty in defining it. “This is an illness that cuts across medical boundaries: immunology, endocrinology, neurology, muscle pathology, infection and gene expression. There is piecemeal research going on that is not taking account of the links that are probably there.”

Stephen Holgate, professor of immunopharmacology at the University of Southampton, chairs the Medical Research Council’s expert group on CFS/ME. “As a clinician who sees patients with this group of diseases I recognise there’s a real thing here, it’s not all psychiatric or psychological,” he says. “Unquestionably in some of these patients there are abnormalities and biochemical changes in the brain, the central nervous system, the spinal cord or the muscles. My personal view is that we’re not dealing with a single condition.”

In 2008-09 the MRC spent £728,000 on ME/CFS out of a total research budget of £704.2 million. The MRC is ready to commission more research on ME, he says, but the stigma and scepticism associated with the condition do not make it an attractive option for top quality scientists.

“The debate is so polarised that scientists are frightened to get involved,” says Holgate. “My aim is to get everyone round the table, so that instead of people throwing bricks at each other we can agree on the priorities, get some quality proposals written up and build confidence in the research community. The need for more research is urgent because what’s happening now is unacceptable for patients and it’s costing the Government a lot of money.”

Nicola Warner knows that her condition has limited her experience of independent living but, despite a relapse when she was 20 and periods when she has contemplated suicide, she holds on to her ambition of becoming an actress. With support from her GP, a local CFS team and Action for ME, she says that she is in control of her ME, “rather than it controlling me”. By limiting herself to achievable goals she has been stable for the past year and has written a novel. Her next goal is to get it published.

Action for ME     ME Research UK     ME Association

There is a comment section  Times

XMRV Retrovirus: Round up 24: Testing and news of research studies

XMRV Retrovirus: Round up 24: Testing and news of research studies

WordPress Shortlink:

Click here for all previous XMRV Round ups and XMRV related postings in reverse date order

Testing for patients in the US

Whittemore Peterson Institute for Neuro Immune Disease:

WPI Announces Availability of XMRV Testing

Press release:

VIP Diagnostics (VipDX):


Report from CFIDS Association of America

From the December edition of the CFIDS Association of America’s CFIDSLink e-newsletter:

HHS Coordinating Xenotropic Murine Leukemia Virus-Related Virus (XMRV) Scientific Activities

The U.S. Department of Health and Human Services (HHS) has formed an interagency scientific working group on XMRV. The Blood XMRV Scientific Research Working Group will report to the Department’s Blood, Organ and Tissue Senior Executive Council through established mechanisms. No formal statement has been issued yet, but the working group includes representatives from the DHHS Office of Public Health and Science, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA). The working group will have scientific responsibilities for investigation of XMRV as it relates to blood supply and CFS. Suzanne D. Vernon, PhD, the CFIDS Association’s scientific director, has been asked to participate in the XMRV scientific working group.

Dr. Jerry Holmberg of the HHS Office of Public Health and Science made a brief presentation on Oct. 30, 2009 to the DHHS CFS Advisory Committee. He described the existing response systems that address threats to blood safety, such as new and emerging infectious agents like XMRV. The HHS Blood XMRV Scientific Research Working Group will chaired by a representative of the NIH’s National Heart, Lung and Blood Institute (NHLBI) and will collaborate closely with the agencies in charge of these systems, including the NHLBI’s Retrovirus Epidemiology Donor Study (REDS). REDS was created in 1989 to address risks associated with HIV-1, HIV-2, HTLV-1 and HTLV-2 in the general blood supply.

In more recent communications with Dr. Holmberg, he stated that the Blood XMRV Scientific Research Working Group is taking a three-stage approach to its handling of the issues related to XMRV and the possible link to human disease. The first stage will be to standardize and validate laboratory methods and reagents for XMRV testing. This is important since variations in sample collection and laboratory procedures can produce discrepant results. These standardized approaches will be used initially to test 1,200 healthy donors’ blood samples and 100 CFS patients’ blood samples collected by Dr. Judy Mikovits of the Whittemore Peterson Institute. Stage two will assess the prevalence of XMRV in the general population and blood supply, as well as in other CFS patient cohorts. The third stage will be a series of studies to understand how XMRV is transmitted, whether it causes human disease, and how it affects various subgroups of the population.

The immediate focus is to ascertain any risks to the general blood supply that XMRV might pose, but the scientific working group is also addressing validation studies for diagnostic tests and if necessary, potential blood screening tests. If the studies indicate that screening is required for blood products, blood screening test, must be submitted to and approved by the FDA before they can be marketed. Neither of the tests currently being offered by two commercial labs has been reviewed by the FDA.

According to CDC, their studies using samples obtained from the Whittemore Peterson Institute has HHS attention. The Laboratory Branch in CDC’s Division of HIV/AIDS Prevention is doing the XMRV testing and not the CDC CFS research group in the Division of Viral and Rickettsial Diseases.

Representatives from the FDA attended the XMRV meeting sponsored by Abbott Laboratories at Cleveland Clinic on Nov. 11, 2009. Dr. Robert Silverman of the Cleveland Clinic gave a seminar about XMRV for HHS staff on Dec. 2, 2009.

Dr. Holmberg emphasizes the need for careful application of scientific methods to ensure that these studies are conducted with exceptionally high rigor and reliability so that the results provide a solid scientific foundation for moving forward. He understands the strong interest within the CFS patient community for swift action and definitive answers, and expressed the high priority that this subject is receiving within a broad range of functions within the Department of Health and Human Services.

The CFIDS Association will provide updates on these important activities as new information becomes available.

December edition of CFIDSLink:

CFIDS Association’s XMRV Resources:

DHHS Statement on Blood Safety and Availability:


Summary of the October 2009 CFS Advisory Committee meeting:



By Adrienne Dellwo, Guide to Fibromyalgia & CFS

Chronic Fatigue Syndrome News: XMRV Test Available From WPI

Thursday November 26, 2009

NEWSBRIEF: The Whittemore Peterson Institute (WPI) is now allowing a laboratory to temporarily offer the tests researchers used in the study linking XMRV to chronic fatigue syndrome (CFS or ME/CFS)…


Testing for patients in the UK and Europe

A member of the UK ME community is maintaining a site collating information on XMRV testing for patients in the UK and Europe.  (Note: I have no connection with this site and all enquiries should be directed to the site webmaster and not to ME agenda.)


News of research studies

On 24 September, the Whittemore Peterson Institute announced news of a five year $1.6 million award  

NIH Bets $1.6 Million on Continued ME/CFS Research by Drs. Mikovits & Kerr
October 21, 2009

Dr. Judy Mikovits (principle investigator) and the Whittemore-Peterson Institute, with collaborator Dr. Jonathan Kerr, have been awarded a 5-year, $1.6 million grant from the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) to support ongoing research into the disease mechanisms of chronic fatigue syndrome. Dr. Kerr is associated with St. George’s College in London.

The award was announced Sep 24 on the WPI website, before news of the CFS-associated XMRV retrovirus was published Oct 8 by the journal Science. A description of the project (# 1R01AI078234-01A2) is now included in the NIH’s Research Portfolio Online.

( )

Key Details from the NIH’s Project Description

• Title: “New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome.”

• Objective: “To provide significant insight into the disease mechanisms of Chronic Fatigue Syndrome so accurate testing and specific treatments can be developed with a goal of curing the disease and preventing life-threatening complications.”

• Timing: start date Sep 28, 2009; projected end date, Aug 31, 2014.

• Funding: First fiscal year funding $335,600; total funding $1.6 million.

• Project Description provided by applicant: (excerpt formatted for greater legibility, as follows).


“Chronic Fatigue Syndrome (CFS) is a complex disease estimated to affect between 0.5%-2% of the population in the Western world.

Its pathogenesis is thought to involve both inherited and environmental (including viral) components, as with other chronic inflammatory diseases, such as multiple sclerosis, rheumatoid arthritis, and atherosclerosis.

Consistent with this chronic inflammatory context, CFS patients are known to have a shortened life-span and are at risk for developing lymphoma. We hypothesize that chronic inflammatory stimulation from active and recurrent infections of multiple viruses on a susceptible host genetic background leads to the pathogenesis characterized by CFS.

The overall goal of this research project is to define these viral and host parameters in European and American cohorts of CFS patients that correlate with distinct disease phenotypes, including the development of mantle cell lymphoma (MCL) in a subgroup of the American cohort.

In Aim 1) we will identify and confirm novel viral infections in European and American CFS patient cohorts.

1.1) We will use two complementary methods for detection of novel virus mRNA: massive parallel signature sequencing (MPSS) and a custom DNA microarray.

1.2) Quantitative polymerase chain reaction Q-PCR will be used for confirmation of virus gene expression.

1.3) Immortalized cell lines will be developed to isolate virus and elucidate links between virus and host cell gene expression.

In Aim 2), we will elucidate genetic factors of susceptibility and the dysregulation of the host defense system. Specifically, we will determine:

2.1) PBMC gene expression of 88 human genes previously confirmed as being differentially expressed in CFS

2.2) Serum chemokine and cytokine profiles using multiplex suspension antibody arrays on a Luminex platform

2.3) HLA, KIR genotypes and whole genome SNP profiles

2.4) Defects in the type I Interferon signaling pathway.

In each subaim both cohorts will be compared to normal and disease controls using specimens of serum and PBMC taken at multiple time-points from individual patients and taken from our unique and extensive sample repository.

This study:

• Will provide information necessary for development of treatment and diagnostic strategies for distinct subgroups of CFS patients,

• And may identify novel virus associations, genetic signatures, and biomarkers, which can predict the development of MCL, thus enabling use of preventive therapeutics.”….

For WPI Research Studies and Clinical Trials go here:


Dr Jonathan Kerr and Dr Derek Enlander

It has been widely reported on forums that Dr Jonathan Kerr (St. George’s University, London) and Dr Derek Enlander (New York) are also engaged in XMRV replication studies.


XMRV researchers

According to an unofficial summary published by Dr Charles Shepherd on behalf of the ME Association following the APPG on ME meeting on 2 December:

“XMRV was discussed in some detail at the Medical Research Council Expert Group Workshop on November 19/20 where there were four UK researchers present who are actively involved in XMRV research:

• Dr Jonathan Stoye – National Institute for Medical Research
• Dr Kate Bishop – NIMR
• Dr Jonathan Kerr – St George’s Hospital
• Dr Suzanne Hagan – Glasgow Caledonian University

There are several other UK virologists involved with XMRV research as well – including Prof Greg Towers at University College London, whom CS recently met for an afternoon discussion.

So replication studies and other XMRV research is taking place, or is about to take place, here in the UK.

MERUK plus IRISH ME TRUST has just funded an XMRV replication study in Sweden.

The MEA Ramsay Research Fund has money available for UK studies – but money does not appear to be an immediate problem in the UK.

It looks as though there may even be some early results from replication studies before the end of the year.”


Update: FOI request for information pending

University College London PhD project

Dept/School Division of Infection & Immunity, University College London
Project Supervisor(s) Prof G Towers

Dr P Kellam
Funding Availability Competition Funded Project (European/UK Students Only)

A role for XMRV in human disease

Laboratory supervisor: Prof Greg Towers

Clinical supervisor: Prof Deenan Pillay


Swedish XMRV study

Prof Jonas Blomberg (Clinical Virology, University of Uppsala) and Prof Carl-Gerhard Gottfries (Sahlgrenska University Hospital, and the Gottfries Clinic) have just begun exploration of the relationship between XMRV and ME/CFS, with funding provided by ME Research UK and the Irish ME Trust

The results of this replication study are exxpected to be available in the Spring/Summer of 2010.

Related material:

ME Research UK overview essay: XMRV and ME/CFS – A stunning find


Commentary on XMRV research and updates on studies

Thread on Cort Johnson’s Forums:

Dr. Timothy Luckett:


Commentary and quality forums

Cort Johnson’s Phoenix Rising website:

Cort Johnson’s Blog and comments:

Cort Johnson’s Forums:

Link Back

Whittemore Peterson Institute on Facebook

For initial Whittemore Peterson Press Release, NIH (National Institutes of Health) News Release, go here:

For PDF reprint of Science paper go here:

Click here for all previous XMRV Round ups and postings in reverse date order:

Register of All-Party Groups and Guide to the Rules on All-Party Groups


The Register of All-Party Groups [As at 20 October 2009] is here:

There are also links at the top of the Register for:

The Nature of All-Party Groups
Purpose and Form of the ‘Register of All-Party Groups’
Purpose and Form of the ‘Approved List’ of Groups
Administration of the Register and Approved List
Complaints about All-Party Groups

The APPG on ME’s current office holders and twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed here:


All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME)

Note that the Group details have not been updated since the AGM in July 2009.

The Office of Secretary to the APPG on ME became vacant following the standing down of Dr Ian Gibson from his seat for Norwich North, on 8 June 2009.

The Countess of Mar was elected to the Office of Secretary at the group’s AGM, on 8 July 2009.

Note also that the Chair, Dr Des Turner, MP, announced at the AGM that it was not his intention to stand at the next general election and that therefore a new Chair would need to be found at that point.

Guide to the Rules on All-Party Groups:

Page 17

General elections

If your group is NOT on the Approved List: this section applies to your group.

5. Once a general election has been publicly announced we write to groups with information about what action they need to take after the election. In essence, unless the group reregisters within two calendar months from the date when parliament first meets after a general election, it is removed from the Groups’ Register, and from the Approved List (if it is on the latter).8 The purpose of this is to allow groups some continuity from parliament to parliament and to give them time to appoint new officers, enrol new members etc.

6. In order to re-register after a general election a group has to hold an inaugural election of officers (which counts as the group’s first AGM of the new parliament) then complete and return the ‘Application Forms for Cross-Party Groups’, within the 2 month period.

[8] The only exceptions are registered groups funded by Her Majesty’s Government (currently only the British- American Parliamentary Group); such group are not required to re-register.


The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” Action for M.E. and The ME Association are listed as jointly providing the secretariat to the group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

As joint secretariat, Action for M.E. and the ME Association undertake the circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are listed as attendees in the minutes of meetings and their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

Two responses around XMRV: Prof Simon Wessely; Dept of Health

Two responses around XMRV: Prof Simon Wessely; Dept of Health


Two users of the Whittemore Peterson Institute Facebook site have kindly given permission for the following responses to be reproduced here, on ME agenda.

Update: The response from Professor Simon Wessely following an enquiry by a member of the public has been removed since permission for publication and the terms under which Professor Wessely’s response might be republished had not been discussed.  A copy of the response was also published by me via Co-Cure together with the response from the Department of Health.  This is also being removed.


Whittemore Peterson Institute on Facebook

Heath reported on 12 November that he wrote to the Department of Health.  The DoH response was:

Thank you for your email of 28 October to the Department of Health about xenotropic murine leukemia virus-related virus and chronic fatigue syndrome/myalgic encephalopathy (CFS/ME).

The Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause. The Department also agrees that CFS/ME is a genuine and disabling illness and can have a profound effect on those living with the condition. That is why research breakthroughs such as the one outlined in your email, are so important to developing the knowledge base.

The National Institute for Health and Clinical Excellence (NICE) clinical guidelines are updated as needed so that recommendations take into account important new evidence. However, as I hope you will appreciate, as NICE is an independent body, the time-frame for revising guidance and the evidence it uses are matters entirely for NICE. You may therefore wish to raise this issue directly with NICE’s Chief Executive, Andrew Dillon, at the following address:

MidCity Place
71 High Holborn
London WC1V 6NA

I think it also helpful to emphasise that NICE clinical guidelines are just that – guidelines for healthcare professionals use in conjunction with their clinical judgement and based on an individual assessment of each patient’s needs. The guideline recognises that there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want.

The guideline emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme.

Cognitive Behavioural Therapy is a rehabilitative approach designed to modify the way patients think and behave about their illness and so improve physical symptoms. In common with other illnesses and conditions where it has been successfully used such as chronic pain, cancer, heart disease and diabetes, its use does not imply that the cause of the illness is psychological.

The Department feels that it is not helpful to differentiate between biomedical and psychosocial treatments as, based on clinical evidence that is currently available, patients are best served by a holistic approach.

You also comment on the paucity of bio-medical research. I know that many of the Department’s stakeholders see biomedical research as the key to developing new treatments and the Department appreciates the concern about a lack of biomedical research in this area.

As you may know, the main agency through which the Government supports medical and clinical research is the Medical Research Council (MRC). The MRC is wholly independent in its choice of which research to support and it does not generally earmark funds for particular topics. It maintains a rigorous decision making process and only funds research that is likely to make a significant contribution to knowledge and is a good use of taxpayers’ money. Decisions to support proposals are taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base. There is certainly no bias, and the Department knows that the MRC remains committed to funding scientific research in all aspects of CFS/ME.

The Department understands that the MRC continues to attract a small number of proposals for biomedical research. The problem is that there appears to be a shortage of good and innovative ideas within the scientific community itself. This is something the Department knows that the CFS/ME community and the MRC are aware of, and the MRC have endeavoured to address this by engaging with patient groups to encourage high quality research proposals. The MRC continues to acknowledge the importance of research into CFS/ME, and it is difficult to see what more the MRC could do without lowering the quality threshold.

I hope this reply is helpful.

Yours sincerely,

Priya Bassan
Department of Health

Related information:

Source: ME Research UK

The Medical Research Council: a case to answer?


CFS/ME projects currently funded by the MRC
(Sources: MRC website; Hansard, written answers)

•Two large clinical trials of new approaches to treating CFS/ME:
          PACE (Pacing, Activity and Cognitive Behaviour Therapy: a Randomised Evaluation, £2,076,363) [Prof. PD White, Psychological Medicine, Queen Mary and Westfield College]
          FINE (Fatigue Intervention by Nurses Evaluation, £824,129) [Dr AJ Wearden, Psychological Science, Uni. of Manchester]

•A preliminary epidemiological project to test the feasibility of identifying the risk factors for persistent symptoms of fatigue and abdominal and widespread pain (£118,263) [Prof. F Creed, Psychological Medicine, University of Manchester]

•An epidemiological study to assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours (£162,145) [Prof. K Bhui, Cultural Psychiatry and Epidemiolgy, Queen Mary and Westfield College]

•Indirect support through a trial exploring the management of patients with persistent unexplained symptoms [Specifics unknown]

•One project was mentioned in Hansard (12th June 2008) but is not on the MRC website: General and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes (£367,000) [Dr C Clark, Centre for Psychiatry, Barts and The London School of Medicine]


Table. Unfunded applications to the MRC between 2002 and 2008

Time-frame   (number of applications)   CFS/ME subject area

2002 to 2005 (11 total) Neurophysiology of fatigue; Population-based/epidemiological studies (4 applications); Neurotransmitters and stress; Neuroimaging; Clinical and laboratory characterisation physiology/diagnosis); Dietary intervention — RCT; Facilitated self-help — RCT; Psychosocial and genetic factors in young people

2005 to 2006 (12 total) Pathophysiology, including studies regarding genetics/biomarkers, immunology and neuroimaging (7 applications); Population-based/epidemiological studies (3); Primary care study; Experimental medicine study

2006 to April 2007 (7 total) Cognitive outcomes in children — pathophysiology; Epidemiological studies — epidemiology; Biomarkers; Pathophysiology (2 applications); Molecular pathogenesis — pathophysiology; Molecular and genetic characterisation — pathophysiology; Neuroimaging — pathophysiology

May 2007 to June 2008 (3 total) Biomarkers — pathophysiology; Management and treatment — intervention; Management and treatment — observational study