Voices from the Shadows

The IACFS/ME Conference Syllabus

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View of San Francisco from the IACFS/ME conference building

The March 2014 IACFS/ME Conference Syllabus with abstracts for the research presentations is now available to download from http://www.iacfsme.org/DesktopModules/DigitalDownload/2014Syllabus25.pdf or http://bit.ly/1t6rxAh
The conference was held in San Francisco and consisted of a patients day and professionals workshops on the Thursday, followed by three days of presentations by international researchers. It was sponsored by Stanford and took place the day after the Stanford University ME/CFS Symposium – which can be viewed at http://mecfs.stanford.edu/2014SymposiumVideo.html
The summary of the IACFS/ME conference by Prof Komaroff (Harvard Medical School) can be listened to with power points on YouTube http://bit.ly/PhqXOf  

Stanford ME/CFS Symposium videos.

The videos from the March 2014 Stanford ME/CFS Symposium were available to view on the Stanford website at – http://mecfs.stanford.edu/2014SymposiumVideo.html
They cover –
1 – Epidemiology of ME/CFS, What Have We Learned?
 Elizabeth R. Unger, MD, PhD
2 – Daily Fluctuations of Cytokines in ME/CFS Patients
. Jarred Younger, MD
Gene Expression Findings in ME/CFS.
 Amit Kaushal, MD, PhD
3 – Lunch and Learn “Media Portrayal of ME/CFS”
. Moderator: Phil Bronstein
. Panel: Natalie Boulton, David Tuller, Erin Allday
4 – Cardiovascular Aging in CFS. 
Mehdi Skhiri, MD
MRI Findings in ME/CFS. 
Michael Zeineh, MD, PhD
EEG/LORETA Studies Suggest Cortical Pathology in ME/CFS 
Marcie Zinn, PhD, Mark Zinn, MM
5 – Approach to the Medical Care of a ME/CFS Patient: Medical Interview and Diagnostic Pitfalls. 
Anthony L. Komaroff, MD
Microbial Diagnostics and Discovery in ME/CFS
W. Ian Lipkin, MD
Closing Remarks. 
Jose G. Montoya, MD

News from ME Research UK

ME Research’s “Breakthrough” special magazine to celebrate over £1,000,000 of research funding for ME is now online at http://www.meresearch.org.uk/wp-content/uploads/2014/05/research-overview.pdf   

These quotes below are from an article  http://www.meresearch.org.uk/our-research/overview-of-funded-research/

“In early 2014, ME Research UK reached a milestone, topping the £1 million mark in grants awarded to researchers. This represents 35 specific biomedical projects, the results of which have now been published as 58 research papers in peer-reviewed scientific journals.” http://www.meresearch.org.uk/our-research/overview-of-funded-research/ “Our research has taken place at institutions in the UK and overseas, and has involved many of the systems of the body. To date, the most important findings have centred around the autonomic nervous system, which controls some core body functions such as heart rate, digestion and breathing; the immune system, which protects us from infection; the circulatory system, particularly the heart and blood vessels which supply oxygen to tissues; and the musculoskeletal system, which is a source of pain and fatigue for many people with ME/CFS. “

“So, what does our overview ‘£1 million of biomedical research’ reveal? Well, the most important lesson is that physiological abnormalities and biological anomalies can be found in ME/CFS patients if scientists have the funding – and the drive – to uncover them. For too long, the prevailing wisdom among some policy makers and healthcare professionals was that scientific investigation was largely unnecessary, since the primary disturbance in people with ME/CFS was psychological. We now know this to be false: scientists can certainly find physical abnormalities – e.g. autonomic nervous system dysfunction, neutrophil apoptosis, arterial stiffness, impaired recovery from exercise, increased oxidative stress – and nonspecific psychological therapies are not cures.”

The research funded by MERUK covers – Genes and systems analysis • Infection • Definitions and diagnosis • Immunity • Circulation and the blood • Clinical trials and therapies • Brain and nervous system • Exercise and muscle • Pain and sensitivity • Children and young people • Research infrastructure • Programmes of research

News from the Czech Republic about an awareness campaign using Voices from the Shadows

Patient groups in some countries have been particularly active in using the film to educate and raise awareness: Japan, Sweden, the Netherlands, Northern Ireland – UK and the Czech Republic. Here is news about the project undertaken by a group of patients to buy and use a box of dvd as effectively as possible – giving them to those who they selected as being the most productive to target.

Screen Shot 2014-06-02 at 09.12.05Nina from the Czech Club of ME/CFS Patients (www.me-cfs.cz) writes:

To mark the occasion of May – the Myalgic Encephalomyelitis (ME) awareness month – in the Czech Republic in 2013, we began an awareness campaign which involved gifting a DVD of the film Voices from the Shadows.  This campaign lasted until February 2014.  The aim of the campaign was to gift the DVD with the documentary about our illness to influential people who can impact the lives of ME/CFS patients in our country.

The campaign has been funded by patients themselves, their families and friends – thanks to them, 45 influential people in the Czech Republic received the DVD of the documentary.

Among the most significant recipients was the presidential couple of our country – Mr President Miloš Zeman and the first lady, Ivana Zemanová.  The Ombudsman, the Public Defender of Rights (http://www.ochrance.cz/en), also received the DVD of the film. The Head of the Country Office of the World Health Organization in the Czech Republic (http://www.who.cz), Dr. Alena Šeflová PhD, and the Dean of the First Faculty of Medicine at the Charles University in Prague (http://www.lf1.cuni.cz/en), Professor Aleks Šedo, were also among the recipients of the DVD.  The film was also gifted to leading doctors who chair specialist medical societies (http://www.cls.cz/english-info), to directors and heads of large clinics, editors of specialist medical journals and also to an editor of the state television who has covered the issue of ME/CFS in the past.  The film was also gifted to Czech organisations for human rights and to other influential people.

The response to this campaign was essentially as expected.  Interest in the patients’ situation, especially of those with the more severe form of ME/CFS, is not a priority.  That’s why we really appreciate the willingness of all the influential people who, despite their heavy workloads, found time to watch the documentary, who sent us their comments and who are doing everything they can for ME/CFS patients.

Among all the welcoming responses, let’s mention the assurance from the President’s Office that the information sent to them will not go unnoticed.  Quite the opposite: Mr President says thank you and that he will make the most of any opportunity so that he can, within his strictly delineated competencies, alert in the most effective manner possible representatives of the highest organisations of executive power.

A positive response came from the Czech office of the World Health Organization.  Dr Alena Šeflová PhD, the Head of WHO in the Czech Republic, expressed her understanding of the difficult situation of people affected with the neurological disease ME/CFS – which is classified under the code of G93.3 in WHO’s International Classification of Diseases.  Although the Czech office of WHO are trying to find a solution, an attitude change towards the disease in the Czech Republic unfortunately appears to be a long-distance race.

An offer of legal help for ME/CFS patients came from the League of Human Rights (http://llp.cz/en/) as a response to being gifted the DVD.  The League deals with patient rights.  An offer of legal help also came from the Czech Helsinki Committee who offered free expert social advice for Czech patients with ME/CFS, for example in the area of welfare benefits.

The film Voices from the Shadows can help to open society’s eyes to ME/CFS but only if there is wider awareness about the film.  Our awareness campaign tried to do this.  We tried to promote the film especially in expert circles because we believe that change of attitude towards patients with ME/CFS in the Czech Republic can come from these circles and therefore this could also offer most help.  More awareness is needed so that there is more funding for medical research.

We thank the filmmakers for making the film and for the opportunity to translate it into Czech.  We hope that our awareness campaign can serve as an inspiration to others to try a similar approach.

Links – some in Czech (Google Translate http://translate.google.com/ can help with translating the articles):

– Voices from the Shadows – the film website: http://voicesfromtheshadowsfilm.co.uk/
– About our awareness campaign – gift the DVD: http://www.me-cfs.cz/view.php?cisloclanku=2013041103
– A list of influential people in the Czech Republic who received the DVD as part of the awareness campaign: http://www.me-cfs.cz/view.php?cisloclanku=2013041104

*****

The Czech Club of ME/CFS Patients – www.me-cfs.cz – provides information about ME/CFS in Czech and serves Czech and Slovak speaking ME patients and other interested parties.  The activities of ME/CFS.cz are carried out by a group of volunteers who are patients, their family members and friends of families of the affected.  We are not a formal association but our activities are carried out under the auspices of The Czech Association of Patients (http://www.pacienti.cz/). You can find more information about us here: http://www.me-cfs.cz/view.php?cisloclanku=2004120601.

 

Invest in ME International Research Conference May 30th.

It will soon be time for the 9th Invest in ME Conference to be held in London again – Synergising Research into ME. As usual, speakers from the cutting edge of ME research will be brought together from around the world for an intensive session. This year  more speakers from the UK are included. Details can be found at http://www.investinme.eu/agenda.html#Conference_Programme

The speakers listed in the programme are –

Prof Jonathan Edwards – Emeritus Prof of Connective Tissue Medicine, UCL,

Prof Angela Vincent – Emeritus Prof of Neuroimmunology, Oxford University,

Prof Jonas Blomberg – Emeritus Professor of Clinical Virology, Department of Medical Sciences, Uppsala University, Sweden,

Associate Professor Mady Hornig – Center for Infection and Immunity (CII), Columbia University Mailman School of Public Health New York,

Prof  Carmen Scheibenbogen – Professor for Immunology and Deputy Chair Institute of Medical Immunology Berlin Charite, Germany,

Prof Simon Carding – Leader, Gut Health and Food Safety Programme Institute of Food Research, Norwich Research Park,

Prof Sonya Marchall-Gradisnik – The National Centre for Neuroimmunology and Emerging Diseases (NCNED) Griffiths University, Australia,

Prof Julia Newton – Clinical Professor of Ageing and Medicine, Institute for Ageing and Health, Newcastle University and Honorary Consultant Physician, Royal Victoria Infirmary,

Prof Maureen Hanson – Liberty Hyde Bailey Professor, Cornell University,

Dr Andreas Kogelnik – Director of the Open Medicine Institute USA ,

Dr Amolok Bansal – Consultant Clinical Immunology and Immunopathology Epsom and St Helier University Hospitals NHS Trust Surrey,

Dr Saul Berkowitz – Royal London Hospital for Integrated Medicine, London,

Dr Julian Bianco Leader of the Irsi Caixa Research Institute’s Cell Virology and Immunology Research Group, Barcelona, Spain

Dr Iain Gibson – Former Dean of Biological Sciences, UEA.

 

 

Stanford Medical School ME/CFS Symposium screening of ‘Voices from the Shadows’

‘Voices’ was screened at the Stanford Medical School ME Symposium last week on March 19th, followed by a panel discussion – ‘Media Portrayal of ME’. The symposium was packed with doctors and researchers as well as some patients, in a very large hall with three screens at the Li Ka Shing Center for Learning and Knowledge. It was great to hear about so much research being undertaken in such a focused way to address so many key aspects of this illness. Afterwards I met the Dean of the Medical school and he appreciatively took a dvd to watch, as did Dr Elizabether Unger who took a dvd for her colleagues at the CDC. I was delighted when Mark Zinn told me that watching the film two years ago at Mill Valley had encouraged him to research ME. Using qEEG and eLORETA he and his wife Dr Marcie Zinn have been showing that there are definite signs of brain pathology and that EEG abnormalities are in proportion to the severity of illness, so could be used to monitor treatment. Prof Komaroff later echoed their findings of a possible indicator of limbic encephalitis, saying that there could well be a low grade ongoing encephalitis. Prof Komoroff’s summing up of the IACFS/ME conference can be heard here. Previously, Prof Hooper in his “Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research” paper of 2007 made the claim that; “There can be little doubt now that myalgic encephalomyelitis is correctly described as an encephalitis associated with upregulation of pro‐inflammatory immune responses, with downregulation of suppressor cytokines.”

Li Ka Shing Centre for Learning and Knowledge, Stanford University, California.

Li Ka Shing Centre for Learning and Knowledge, Stanford University, California.

David Tuller, who took part in the post screening discussion, wrote a report about the Stanford and IACFS conferences for Buzzfeed and quoted Prof Lenny Jason – “I was thrilled to see so much good science…… That’s such a sea change. There was such a wealth of research that every session you went to you saw abnormalities being pointed out in different domains. It was breathtaking.”

Tuller goes on to say –
‘At a pre-conference gathering at Stanford… scientists from the university reported that levels of 13 chemical messengers of the immune system known to increase inflammation, called cytokines, paralleled disease severity in almost 200 people with ME/CFS. In a study of a small group of patients, daily levels of a cytokine called leptin rose and fell over 25 days in accordance with subjects’ self-assessment of whether they were experiencing more or fewer symptoms.

Researchers at the Stanford and San Francisco meetings also reported that ME/CFS patients exhibit strikingly different EEG patterns than those of healthy controls, perform poorly on cardiopulmonary exercise tests (especially when they undergo the testing two days in a row), frequently suffer from co-morbid conditions such as fibromyalgia, are more likely to get sick if one or more family members also has ME/CFS or a related disorder, and experience pronounced abnormalities in many physiologic functions.

Dr. Jose Montoya, an infectious disease expert and the leader of the Stanford research effort, said the increased understanding of ME/CFS as an inflammatory illness would generate new approaches for treatment, even in the absence of a precise understanding of the triggering events.’ Read the full article at
http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome-research

A report of Prof Komaroff’s overview of the conferences can be found here. http://www.meactionuk.org.uk/Komaroff-Summary-San-Francisco-March-2014.htm

Videos from ‘Exercise & ME/CFS’ Event at Bristol Watershed now online

Presentations from the Exercise and ME/CFS event in Bristol in Feb 5th, following a screening of Voices can be now be watched here (found under the screenings tab)

Exercise and ME/CFS evening a success

The ‘Exercise and ME/CFS – the evidence’ evening in Bristol went extremely well. It was oversubscribed  – completely packed with around 120 people – despite terrible weather, massive traffic jams and extensive flooding in Somerset. Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman all gave very good presentations after a 30 min version of ‘Voices’ showing 4 young people’s stories of how mismanagement of their illness had caused severe deterioration in their health. The event was filmed and will be available to watch online soon. There were professionals from three CFS/ME centres –  Bristol adults, Bath children and adults and Somerset CFS Service – as well as from two Bristol Universities, a wide variety of other medical professionals, disability advisors and many patients, carers and parents from nearby and far afield.

Thank you to all those who helped in various ways – to Joan McParland who spent two years planning how to bring Mark VanNess to the UK, to Shass Blake whose North Bristol Support Group hosted the event, to the Quartet Foundation who gave a substantial grant, to MERUK who helped fund their spokesperson Sue Waddle who chaired the event, to the ME Association for helping fund Dr Nigel Speight their paediatric Medical Advisor and Erinna Bowman from the Biobank’s expenses. Thank you to Duncan Cox, Cath Ross, Nicki Strong & Sandy Shott for helping in different ways and to the families who offered financial help, if needed. Thank you especially to Nigel, Sue and Erinna who give their time so freely and repeatedly to help patients. The feedback after the event from both medical professionals and patients and carers has been excellent. The presentations are being prepared for viewing and will be available to watch here very soon. Prof Mark VanNess’s presentation will also soon be available on the Workwell Foundation website, but in the meantime they have  presentations available by other members of the research team – Chris Snell and Staci Stevens – under video links.

 

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Exercise and ME/CFS at Watershed was chaired by Sue Waddle, spokesperson for MERUK.

Erinna Bowman, Prof Mark VanNess and Dr Nigel Speight answered questions, chaired by Sue Waddle.

Erinna Bowman, Prof Mark VanNess and Dr Nigel Speight answered questions, chaired by Sue Waddle.

 

 

 

 

 

 

 

Introduction to the film shown on Feb 5th. at the Watershed – Natalie Boulton

We finished the ‘Voices from the Shadows’ film 2 and  half years ago and actually started it a couple of years before that, so most of the interviews are now quite old. Unfortunately they are no less relevant now than they were then, as Nigel will explain later.

The first interview we did, was with Simon Lawrence who founded and runs the 25% Group for severely ill ME patients. It was difficult to film and he was far more ill than we’d expected.  One of the things he said, that I didn’t really want to hear, was that over the years he had seen many, many people progressively become more and more ill  and many had died – he had lost many friends, he said, although, this was invariably put down to other conditions as being the cause of death.

Over the last 6 or more years I have been in contact on and off with a small group of young people, through my daughter, most of whom took part in the book Lost Voices from a Hidden Illness or the film. They mostly became ill as children or young adults. I have seen or rather heard of their progress over the years. Two of these, who were my daughters friends, are now dead. Another who I keep in quite close contact with has gone from being up on his feet and going out for short trips, to being completely bed bound, unable to get to the the toilet even with an electric wheelchair, unable to watch a computer screen or TV, unable to read and unable to have his hair cut or to shave – as you will see in his photo in the film.

This is a shocking film. But when we started to do the interviews we had absolutely no idea how shocking and frightening the accounts would be. I thought, from making the the ‘Lost Voices’ book that I had some idea of what was going on – but what we were told in interviews was a revelation. It became clear that these accounts were part of a coherent picture that needed to be told – The story of how physically ill children and young people, had been encouraged, persuaded, coerced, and even physically forced as a last resort, to conform to a view of this illness which is now proved to be utterly misguided and false –  even though it is still being widely promoted.

This 30 minute version of the film contains 4 accounts of young people with ME. There is Naomi who tells her own experiences along with her mother Elizabeth and her brother and sister. Kay Gilderdale recounts how her daughter became so severely ill, Criona tells us what happened to her daughter Sophia. Sophia herself recorded some of the material we used. The child we refer to as B needs to remain unidentifiable and remains severely ill and traumatised by what was done to her. The room shown is not even her own room, we created it largely using my daughters possessions but I am told it is surprisingly similar. The account her parents wrote is read by an actor. Photos of other severely ill young people are shown while the ME specialists speak.

This film makes an impact on people, not because it is particularly well made, but because of the total sincerity and honesty of the people in it. We filmed them as witnesses, to hear what they needed to say, not to make an argument – and a tragic story emerged.

 

Stanford Symposium March 19th

The programme for the March 19th Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Symposium is available to view at http://chronicfatigue.stanford.edu/documents/ChronicFatigueSyndromeCME2014-FORMS-r3a.pdf

Bristol Watershed. Tickets are no longer available for “Exercise and ME/CFS” – Feb 5th. 2014

BNFME

“Exercise and ME/CFS – the evidence”

Watershed, Harbourside, Bristol   6.30 – 9.15 pm  Feb 5th 2014.

Tickets are all sold.  here on the ‘shop’ page.  

 Programme available  here –  Programme   Videos of the presentations can be watched here

 

This event has been approved for 2 CPD credits.

Enquiries to North Bristol FME/CFS Support Group call 0844 887 2475

 

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We  are very grateful to the Quartet Community Foundation for a very substantial grant contributing towards the cost of this event.

 

Many thanks to ME Research UK who have helped with expenses for Sue Waddle, their spokesperson, and many thanks to ME Association for help with expenses for  their paediatric medical advisor Dr Nigel Speight and for Erinna Bowman from the London School of Hygiene and Tropical Medicine and the biobank project, which MEA has helped fund.

 

The ‘Exercise and ME/CFS – the evidence’ evening with Prof Mark VanNess at Bristol’s Watershed follows the day after his visit to Belfast to address MPs and medical professionals at Stormont. This is a unique opportunity in Bristol: to hear the latest evidence relating to the biological basis for fatigue and the consequences for people with ME or CFS of different kinds of exercise programmes. Dr VanNess has been involved in extensive research with Staci Stevens and Chris Snell at the Workwell Foundation in California (& the Pacific Fatigue Lab).

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The role of exercise and activity management in ME and CFS has been a source of great controversy for many years – widely accepted as beneficial by many healthcare workers but questioned by many ME charities and patients who have personally suffered adverse consequences caused by overactivity. This work brings a breath of fresh air and objective scientific measurement into a field that has long been dominated by confusion and subjective impressions.

The Workwell’s two-day testing protocol is designed to objectively measure functional capacity and the symptom of post-exertional malaise in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Using these discoveries they have also been able to develop therapeutic strategies to help patients. This is the first time that these discoveries will be explained in the UK by a member of their research team. In the fields of exercise science and medicine, cardiopulmonary exercise testing is considered the gold standard for measuring and evaluating fatigue.

In Bristol Prof VanNess will be joined by Dr Nigel Speight – a well known consultant paediatrician with decades of experience in helping children and young people with ME  – and by Erinna Bowman a Research Fellow with the  CURE-ME research team led by Dr Luis Nacul at the London School of Hygiene and Tropical Medicine. She will talk about their current research projects, for which they been awarded an approx £1,000,000 grant from the National Institutes of Health (USA), as well as speaking about their past work.

This event will  be of interest to clinicians, general practitioners, paediatricians, doctors in training, counsellors, occupational therapists, physiotherapists, nurses, researchers, educators, patients, their families and carers and all involved in helping patients with ME and CFS.

About the speakers

J-1.-Mark-VanNess-Ph

“Understanding fatigue in ME/CFS: An exercise in objectivity

Dr Mark VanNess PhD is a  Scientific Advisory Committee Member at the Workwell Foundation in California, USA. He is Associate Professor in the department of Health, Exercise, and Sport Sciences at the University of the Pacific. He has a doctorate in neuroscience and has been involved in many published research projects, working alongside Staci Stevens, Chris Snell and others.

Dr VanNess began working on CFS in 1999. His main research interest is in the role of the autonomic nervous system in immune dysfunction. He also has a particular interest in the mechanisms that produce post-exertional malaise, especially as they contribute to physical and cognitive dysfunction.

Of their  new study, published this summer,  Staci Stevens says; it

“provides the CFS/ME community an objective, quantitative marker of post exertional malaise. To date, diagnosis has been qualitative based on a list of symptoms, resulting in wide variability in the patient population.”

More information on the Workwell research and some very good video explanations can be found here. The team also includes Dr Dan Peterson, who is one of the forefathers of ME and CFS research and treatment in the USA; since an epidemic affected his patients in Nevada in the 1980s.

How does this research help patients? The Workwell researchers main interest in the lab is to use standardized cardiopulmonary exercise testing to more clearly characterize “fatigue” in CFS/ME. They can use the post-exertional responses after an exercise test to clearly define the illness without the problems associated with waxing and waning of symptoms (fluctuations of symptom intensity). CPET is frequently used for measuring disability in various health conditions, but it has an additional and particular benefit for ME  and CFS patients, since it can also be used  to help patients establish an individual SAFE level of activity. It appears that many patients are actually living their lives  and exercising at a level of activity which may continue to harm them and cause long term severe disability.  As exercise physiologists, Dr VanNess and his colleagues are interested in the use of exercise training and energy conservation therapy as techniques to enhance the quality of life of patients and avoid symptom exacerbation associated with excessive aerobic activity.

In the UK ideas about exercise and ME /CFS have been coloured by exaggerated claims in the media about the results of the PACE Trial. Mark VanNess and his  Workwell colleagues bring a breath of fresh air, objective measurement and science, to the confusion of subjective claims and counter claims about the role of exercise in the management of ME and CFS.  See ME Research comment for interesting analysis of the PACE Trial.

01Dr Nigel Speight  MA, MB, BChir, FRCP, FRCPCH, DCH 

“The Challenge of ME/CFS in children and young people.”

Dr Speight is currently a medical advisor for The ME Association, The 25% Group, TYMES Trust, and the MEA of Wales. He is widely considered to be the most knowledgeable and experienced ME consultant paediatrician in the UK. He has remained dedicated to working to protect children and their families from wrongful and illfounded care proceedings, sadly a job which continues to this day. In fact these cases are currently growing in frequency as a consequence of widespread misunderstandings caused by some of the advice in the NICE Guidelines.

He has also developed special interests in childhood asthma, food intolerance, child abuse and neglect, emotional and behavioural problems and ADHD. This breadth of involvement  – both with cases of ME and with child abuse and neglect and emotional and behavioural problems – places him in a unique position in recognising when misguided accusations are being made against parents of children with ME and the children themselves.

He was on the Chief Medical Officer’s Working Party which reported in 2002 and also the College of Paediatrics Guidelines group. He gave evidence to the Gibson Inquiry and on three occasions has talked to the ME interest group at the Scottish Parliament. He was not involved in drawing up the NICE Guideline for ME.

More recently, along with 25 other specialists representing 13 countries, Dr Speight  was a member of the International Consensus Panel which published the   ‘Myalgic Encephalomyelitis: International Consensus Criteria’ 2011 for diagnosing and researching ME. This was a development from the Canadian Consensus Criteria. It is based on the most up-to-date international research and clinical experience which ‘strongly point to widespread inflammation and multisystemic neuropathology’ stressing that;

“Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome”.

Dr Speight has also contributed to  “Myalgic Encephalomyelitis – Adult and Paediatric: International Consensus Primer for Medical Practitioners” edited by B Carruthers and M van de Sande and published  in 2012. This explains that

“the criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions.”

There is a handout about Childhood ME written by Dr Nigel Speight here and a recent article Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Review of History, Clinical Features and Controversies. can be down loaded from this link www.sjimms.net

 

1012639_594176923960902_2113330161_n“Establishing a biobank for biomedical research on ME/CFS” 

Erinna Bowmanis a Research Fellow and named researcher for the recent award of approx. £1,000,000 given to the team at the London School of Hygiene and Tropical Medicine by the The National Institutes of Health (USA). Dr Luis Nacul leads the CURE – ME team, which works to improve recognition, diagnosis and treatment of ME/CFS; from the National CFS/ME Observatory, which explored the impact on affected individuals, to the development of the UK’s first biobank of samples for ME/CFS research. They are now working to extend the biobank and to engage in immunological research, as well as establishing a network of international ME/CFS research groups, in Europe (Norway, Italy, Latvia) and South and North America.. The team will undertake a longitudinal study of clinical presentation, immune phenotype, gene expression and virus infection among ME/CFS patients and MS and population controls. Clinical samples will be collected for studies of NK cell function virology (herpesvirus infection), and gene expression and for banking as a resource for future ME/CFS research. Dr Eliana Lacerda one of the lead researchers on the project, said:

At least one in every 500 adults [0.2% or approx. 126,000 adults] in the UK is affected by ME/CFS at any one time, as well as a smaller but significant proportion of children. The NIH grant provides a huge boost to the Biobank, which will enable more research into the causes of ME/CFS and ultimately help those affected.

The team will analyse blood samples for NK cell phenotype and function, screen samples for evidence of herpesvirus infection and viral load, focusing on Epstein Barr virus (EBV), cytomegalovirus (CMV), and human herpesvirus-6 (HHV-6), describe clinical phenotype and fluctuations over time, and correlate the presence of symptoms and severity with markers of virus activity and immune function, and investigate gene expression profiles associated with ME/CFS and how they vary in relation to changes in disease severity, virus activity, NK cell function, and other markers of immune function.

This is thought to be the first longitudinal study of ME/CFS to incorporate both mild and severe cases, age, sex, and residence-matched Multiple Sclerosis (MS) and healthy controls, and to incorporate virological, immunological and gene expression data into the same study. It is expected that this work will contribute towards the identification of robust biomarkers which will allow clinicians to correlate ME/CFS phenotype (including clinical presentation, genetic, immune, and viral markers) with disease severity and prognosis and may reveal new options for interventions research.

This work is in line with other international research teams, including the Infection Associated ME/CFS team at Stanford University.