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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

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“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.

 

 

Treatment called Graded Exercise Therapy (GET)..may not help ME/CFS, but actually can make it worse.

An article today in the American Banking and Market News –  Nov 20th 203 says-

“At a medical conference today sponsored by the NewYork ME and CFS Center at Mt. Sinai and held at the New York Academy of Medicine, researchers showed that a form of treatment called Graded Exercise Therapy (GET) which has been lauded by the UK’s National Institute of Clinical Excellence (NICE) and recommended by the U.S. Centers for Disease Control and Prevention (CDC) may not help ME/CFS, but actually can make it worse. Unfortunately, the CDC has long been touting that certain exercise regimens can help manage the disease, even offering guidance on their website.

Dr. Derek Enlander, Dr. Eric Schadt, Dr. Miriam Merad, Dr. Christian Becker and a team of researchers at Mt. Sinai Medical Center have discovered new research on ME/CFS that could change the way the disease is treated. Their research shows that the disease is tied to the immune system much more than originally thought. A recent study showed patients can actually relapse when they partake in excessive exercise, and other therapies maybe more effective.

‘We want to raise awareness about this disease, how it affects the body and the best way to treat it,” Dr. Enlander said. “For too long, this disease has been misunderstood, leading to a poor quality of life for far too many patients. We hope to change all that.’”  http://www.americanbankingnews.com/2013/11/20/incorrect-government-information-could-be-hurting-chronic-fatigue-sydrome-patients-new-research-finds/

 

2014 Stanford ME/CFS Symposium: Advances in Clinical Care and Translational Research

Stanford University’s ME/CFS Initiative will be holding a conference on campus in Palo Alto, California March 19, 2014 focusing on ME/CFS related clinical and research activities occurring at Stanford University

Stanford University Department of Infectious Disease will present the  symposium  “Advances in Clinical Care and Translational Research” on March 19th  2014 at  the Li Ka Shing Center for Learning and Knowledge,  Stanford, Palo Alto, California.  The conference will occur one day before the IACFS/ME Conference (March 20-23, 2014) in San Francisco and is targeted primarily at clinicians and researchers.

“Chronic Fatigue Syndrome is arguably the greatest medical and scientific challenge of our time.”                                          ~Jose G. Montoya, MD

The symposium is sponsored by the Stanford University School of Medicine. Additional information and full programme will follow. For more information about the symposium, please contact Yolanda Cervantes Stanford Center for Continuing Medical Education CME Conference Coordinator.   ycervantes@stanfordmed.org

 

Tsunagari Movie Festival Tokyo.

Dec 8th. Screening of ‘Voices from the Shadows’ at the Tsunagari Movie Festival in Tokyo 

About 20 documentary movies on the disabled  will be screened between December 5th -9th at Shibuya UPLINK, supported by the Agency for Cultural Affairs in Japan.  “Voices” will be screened by Japan ME Association on December 8th. The festival is organized to ask for integrative and fair welfare laws and elimination of discrimination towards the disabled.

Verein ME/CFS Schweiz – Conference with “Voices” screening – Zurich – Nov. 2nd

A conference and film screening organised by Verein ME/CFS Schweiz will beheld at the Zurich University Hospital – UniversitätsSpital Zürich – November 2nd – from 9.30am till 6pm.

Speakers will include Dr. med. Leif Hanitsch (Charité  Berlin)  “Diagnose, Behandlung und Forschung an der Charité und Update zu Rituximab”,  Prof. Dr. med. Werner Z’Graggen (Inselspital Bern) Facharzt für Neurologie, Leiter neurovegetatives Labor “Orthostatische Intoleranz (Intoleranz der aufrechten Körperhaltung)“,  Dr. med. Joachim Dietz (Aeskulap Klinik, Brunnen) Facharzt für Allgemeinmedizin und Sportmedizin Oberarzt Bereich chronische Erkrankungen “ME/CFS: Therapiekonzept der Aeskulap Klinik” and other speakers.
The full programme is available to download  here. Entrance is free.

Open letter from ME experts to US Secretary of Health and Human Resources in support of the Canadian Criteria.

In the USA there are alarming moves for Health and Human Services (HHS) to ask the Institute of Medicine (IOM) to construct new clinical criteria for ME/CFS. This would impact on patients around the world. It has caused great concern because the IOM’s previous attempt at criteria for Gulf War Syndrome has not been at all helpful. The last thing patients need is yet another set of broad criteria which muddle different illnesses together and result in people being misdiagnosed and offered the wrong types of treatment.

Thirty of the USA’s foremost experts on ME, and others from around the world, have signed an open letter,  available here, expressing their total support for the Canadian Consensus Criteria – “we have reached a consensus on adopting the 2003 Canadian Consensus Criteria (CCC) as the case definition for this disease.” They point out that “the CCC is a more scientifically accurate description of the disease” than the Fukuda criteria and  it “incorporates the extensive scientific knowledge gained from decades of research.” They explain that failure to adopt these criteria “will significantly impede research and harm patient care.” whereas adopting the Canadian criteria “will facilitate our efforts to define the biomarkers, which will be used to further refine the case definition in the future.” …”we strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS.”

The full letter and list of signatories is available at –  https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf

There is also a more detailed letter from Dr Lily Chu  available at – https://dl.dropboxusercontent.com/u/89158245/Dr.%20Lily%20Chu%20letter%20to%20Secr%20Sebelius%20Sept%2027.pdf

Stanford ME/CFS Initiative Newsletter

DSC_1057 The Stanford ME/CFS Initiative website has been updated and a link to the Summer 2013 Newsletter is posted http://chronicfatigue.stanford.edu/documents/Newsletter_2013.pdf on the main page http://mecfs.stanford.edu

This is exciting news as Dr Montoya and his colleagues now have a solid  foundation in place so things really are starting to move more quickly and many more people are becoming involved. Recently completed research is listed in the Newsletter  and work is currently underway in the following areas –

Detection of infectious pathogens that may contribute to chronic diseases 

Investigation of gene expression and immune system dynamics of infection in acute and chronic diseases 

Assessment of neuronal and neurovascular changes in infection-associated CFS patients

Examination of cardiovascular health in patients with CFS

Use of qEEG to assess the neurological changes in CFS patients

Dissemination of CFS research

Subgrouping chronic fatigue syndrome patients by genetic and immune profiling

ME/CFS Biobank

Gene Expression and Immune System Dynamics in Acute and Chronic Disease- Lyme Disease Cohort

There are big plans for the future too – Educational outreach: We plan to host a major research meeting at Stanford University with the participation of international investigators to increase the understanding and the exchange of information in the field of chronic inflammatory disease. A biennial educational meeting aimed at practicing physicians, fellows, residents, and medical students will be initiated as well. We believe that we can significantly impact the field by re-educating the nascent and established medical community about the major and complex issues faced by our patients.” and  they also hope to form an inpatient Center for Infection Associated Chronic Diseases at Stanford.

 

£1,029,411 Grant awarded by NIH to researchers at the London School of Hygiene and Tropical Medicine

The London School of Hygiene and Tropical Medicine has announced that the Bio Bank project, which is lead by Dr Luis Nacul with Dr Eliana Lacerda and Erinna Bowman has been awarded a grant worth over £1 million over three years, by the National Institutes of Health (NIH) in the USA.

The press release states –“The grant from the NIH will enable important research on the immunology and genetics of ME/CFS, which may lead to the discovery of much needed disease biomarkers. It will also help to expand the Biobank to store samples from over 500 participants, including almost 300 patients and over 200 controls (comprising healthy controls and people with multiple sclerosis), which will be made available to medical researchers internationally.

 Dr Eliana Lacerda from the London School of Hygiene & Tropical Medicine, one of the lead researchers on the project, said: “At least one in every 500 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.”

Erinna Bowman, one of the project researchers, said: “A key component of our project is its longitudinal design, which includes participant follow-ups over an extended period of time. This longitudinal aspect makes the Biobank an even more valuable resource and presents new opportunities for scientific discovery in the years to come.”

See more at: http://blogs.lshtm.ac.uk/news/2013/06/28/uk-mecfs-biobank-project-awarded-1-million-grant/#sthash.E2HBwCUy.dpuf

It is wonderful to  hear that these dedicated researchers have been awarded such a substantial sum for their relevant and valuable research.  It is clear that the work will be directed at helping people who have ME, also called CFS in the USA, and not the larger percentage of people who have chronic fatigue. Their 2011 research into prevalence of ME/CFS stated “Our study yielded a minimum prevalence in primary care of 0.2%” This equates to one in 500 or around 126,000 people and so is only about half the number usually given of 250,000 in the UK . It is  also interesting to see that these LSHTM researchers, along with most other researchers, consider that ME is less prevalent in children than in adults. That is very good news for children and their families.

The research group at LSHTM is called CURE-ME and more info is at – http://www.lshtm.ac.uk/itd/crd/research/cure-me/

Their 2011 research into the prevalence of ME/CFS can be found at http://www.biomedcentral.com/1741-7015/9/91