Voices from the Shadows

Exciting developments at Stanford – article

A new and heartwarming article http://stanmed.stanford.edu/2014fall/immune-system-disruption.html by Kris Newby published in Stanford Medicine describes the exciting research being undertaken at Stanford. Both Dr Montoya’s ME/CFS Initiative and Mark Davis’s Human Immune Monitoring Centre are undertaking research which is throwing light on the underlying mechanisms of the illness and guiding treatment.

“Montoya’s chronic illness initiative is the largest project in the HIMC at this time, and the complexity of the task ahead is daunting. The staff is looking for meaningful patterns in the many components of the 600 blood samples, including dozens of cytokines, 35 cell-surface proteins, 15 or so types of blood cells, and more than 47,000 genes and regulatory nucleic acids. The challenge is not only to quantify the normal ranges for these components, but also to understand relationships between the components and reverse-engineer the cascade of biochemical reactions that drive immune system processes. He anticipates it will take about a year to run all 600 samples through the processes.”

Montoya achieved his first goal, the launch of the first major ME/CFS research initiative, with a little funding luck and the recruitment of a top-notch research team. With the assistance of Davis and his immune system hackers, he’s close to reaching his second goal: the identification of biomarkers and causes, which will enable physicians to provide a definitive diagnosis and treatment options to patients suffering from this debilitating condition.

The third goal of his hoped-for hat trick will be a whole new way to look at the human immune system. It’s a game changer. It will provide researchers with a new playbook of research strategies to help them discover the causes of other confounding conditions, from Lyme disease to multiple sclerosis to fibromyalgia. It will provide clinicians with a better set of metrics for assessing patients’ health. And then the patients lying in dark rooms with forgotten diseases, whose numbers could fill hundreds of soccer stadiums, will have reasons to stand up and cheer.”

Extracts from long article by Kris Newby http://stanmed.stanford.edu/2014fall/immune-system-disruption.html  

 

The presentations from the Stanford ME/CFS Symposium can be watched at – http://mecfs.stanford.edu/2014SymposiumVideo.html

IiME 2014 Conference report by Rosamund Vallings MB BS

Screen Shot 2014-09-11 at 13.34.19The IiME 2014 Conference report by Rosamund Vallings is available to read at http://www.investinme.eu/report.html  DVDs of the conference (and past conferences) are available from IiME   http://www.investinme.eu/2014%20Conference%20DVD%20Order.html

“The main conference was opened by Dr Ian Gibson.

The first speaker was Prof Jonathan Edwards (London) who spoke about the lessons learnt for ME from his lifelong study of Rheumatoid Arthritis (RA)…….

Angela Vincent (Oxford, UK) spoke about the searches for antibodies in neurological diseases and posed the question as to whether they could be similar to what may be happening with ME. She talked first about the classical auto-immune disease Myasthenia Gravis (MG)……..

Jonas Blomberg (Uppsala, Sweden) discussed infection-induced auto-immunity in ME.  His lab uses a multiplex technique, and they are able to look at hundreds of different antibodies at a time……

Mady Hornig (New York, USA) addressed her work on Pathogen Discovery. She has looked at the “3-Strike Hypothesis” – genes, environment and timing…….

Carmen Scheibenbogen  (Berlin, Germany) discussed the role of EBV in ME. She described how a subset have disease onset associated with EBV. Then there may be recurrent fever and nodes and the patient describes the illness as if infection is ongoing……

Prof Simon Carding (Norwich, East Anglia) looked at the role for leaky gut and intestinal microbiota in the pathophysiology of ME……

Sonya Marshall-Gradisnik (Gold Coast, Australia) updated us on the current knowledge of immunological biomarkers in ME. She initially described the different cells in the innate (dendritic and NK cells) and adaptive (NKTcells, T cells, B cells and γδT cells) immune systems…..

James Baraniuk (Washington, USA) discussed his work with MRI and victims of Gulf War Illness (GWI). He has explored a model sub-group dating back to 1990-91. Many had experienced acute illness, possibly as a result of sarin exposure. There has been chronic progression of illness over 20 years. Up to 25% of Gulf War veterans were affected……

Julia Newton (Newcastle, UK) focused on the Autonomic Nervous System (ANS)and its relationship to ME. She explained that there is overlap between the ANS and many diseases associated with fatigue. The experience of fatigue is the same in many diseases. She described the ANS, and said that dysautonomia in ME is likely. The fatigue in 89% of those with ME may be due to Orthostatic Intolerance (OI)…..

Amolak Bansal (Surrey, UK) discussed diagnosis and treatment of ME within the NHS. His initial comments mentioned that eventually the current exclusion criteria may go on to be included, and that if anything the new ICC can make things more complicated. His team use the Sutton CFS/ME scoring system, needing 8 out of 13 points to make a diagnosis……

Andreas Kogelnik (California,USA) went on to discuss the diagnosis and treatment of ME in the USA. He stressed that this is not a psychiatric disease……

 Julian Blanco (Barcelona,Spain) gave an external view of ME research strategies……”

Ros Vallings ends by saying, “Things are moving forward rapidly, and while much work lies ahead, the new directions and science have become increasingly exciting.”

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 are now 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.