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Where can desperate ME patients turn for help?

When ME patients fall foul of the NICE & NHS confusion about the classification of their illness, who can they turn to for help? Who will advocate for those in dire need – when they are  told that their ME is a functional or a psychiatric illness and they are threatened or forced into treatments that harm them, or they are accused of being malingerers?

When your future health and even your life, is at risk because of the severe deterioration and post exertional amplification of symptoms – caused by mis-management and treatments involving aerobic exercise and overactivity, a harmful environment where you are overexposed to stimuli, or if your feeding and support is withdrawn – who can you turn to for help in the UK?

I didn’t realise until quite recently just how bad, how terrifying this can be, and just how little help there is for patients with severe ME – especially if someone is on their own and depending on social services for care.

As far as I can see, The 25% Group is the only adult charity in the UK with an advocate who could help in such circumstances. She is very good at her job, but desperately overworked and underfunded. She cannot take on all cases that need help, and members must be prioritised.   For children the TYMES Trust offers help to their members, as you can see from their reports of the horrifying number of families who have needed their help to stop their children being removed.

Why have we, as patients, carers and parents, not insisted to ME charities that adequate support for those patients whose lives are being put at risk is an urgent priority?

Yes, we need research to be funded – but high quality, well designed research looking at key biomedical issues. Too much research is actually a waste of money as far as patients are concerned – it is too small scale, too badly designed, sometimes totally irrelevant or even dangerous and too often includes patients who are misdiagnosed with ME/CFS and actually have other conditions. The big International players are now doing some of the research that needs doing, although in pitifully small amounts, and some smaller scale research projects are carefully directed and well thought out, but patients’ money is still going into random, badly designed, small scale projects whose aim is primarily to help promote particular researchers careers and job security, by bringing in funding for the researcher’s university, and to satisfy patient requests for research.

Surely it is time to make sure that some funding goes to help patients whose lives are being ruined. The sums needed to do this are minute in comparison with the costs of research. For example a research project by Clare McDermott to enable ME patients to share their experiences online, recently presented to to Forward ME and asking for support, has an estimated cost of £350,000!!

Research into the pathophysiology of ME and treatment options needs to be addressed as a priority, but in the meantime we can’t just abandon the unfortunate patients whose lives are being destroyed by medical ignorance, prejudice and psychiatric power struggles – while we support poor quality research, some of which is so distorted it can do more harm than good.

So, my personal suggestion is – join The 25% Group for the Severely Ill if you are mainly housebound, or join TYMES Trust if you have a child. It appears to be the severely ill who are most at risk. Very severely ill patient often develop problems with eating and absorbing food. This is being widely promoted as a psychological issue rather than a common aspect of very severe ME  (evidenced in Voice from the Shadows). You can help other severely ill patients by making a donation to the 25% Group, or fundraising for their advocacy service. Many charities depend entirely on donations and fundraising by patients and their families – make sure that your money is used in the way you want! Some charities have paid fundraisers to raise money and use it in the way their trustees want – but even then you may perhaps have an influence. Please make you voice heard.

None of us want to see children taken from their parents by social services, parents and patients put in psychiatric wards,  patients deprived of feeding to force them into hospital where their ME may be classified as being a ‘functional condition’ or somatoform disorder, or patients subjected to harmful management, or just abandoned. In these kinds of cases expert help is needed urgently, to try to prevent such things happening – and an effective and experienced ME advocate would be the best help to have available to help sort out the priorities of what to do next.

Who is going to put that safety net in place for all those who are vulnerable to bullying and abuse by professionals?

These are some of the issues that need to be urgently addressed in such cases – 

  1. When should you try to contact your MP to ask for help, how do you contact them and how do you educate them about ME?
  2. And your local Councillors? Could they be of help? and which ones? Should you try and contact those with most influence? and again, can anyone help you educate them too?
  3. Should you try to change your GP? Have you already tried everything you can to help your GP understand about severe ME.
  4. Is there misleading or inaccurate information in  your medical records which has lead to this situation? How do you access these and get incorrect or misleading material changed?
  5. How do you find a good solicitor? Do you need legal aid? Are you eligible for legal aid? How do you find out? Are there any solicitors who already have experience of supporting patients with ME. And what should they specialise in – mental health? – social care? You’ll probably need to educate them about ME too!
  6. Are there any doctors or consultants who can ensure you have an accurate diagnosis ? Many people are not accurately diagnosed. Are you well enough to get to see a consultant or do you have to find someone who is willing to visit you? Are there any specialists who would be willing to make a home visit?
  7. Is your diagnosis of ME reliable, but your ME is considered to be a form of psychiatric illness i.e. perhaps one of the  somatic symptom disorders (a new very broad-ranging category which includes what was previously named somatoform disorders) somatisation disorder, psychosomatic illness, MUPS or MUS (physically unexplained physical symptoms),  malingering,  factitious disorder (Munchausen’s Syndrome), or conversion disorder,  or is your ME being considered to be a functional neurological disorder? There are many possible mental health misdiagnoses that people ill with ME might be given. (A recent article in the Independent  has an interview with the President of the Royal College of Psychiatrists who gives CFS (ME) as an example of the stigma attached to mental illness! So CFS or ME  is very publicly categorised by a top psychiatrist as being a mental health illness.) The main medical text book by Kumar and Clark doesn’t mention ME, but includes CFS in the mental health section under Functional or Psychosomatic Disorders, so having your CFS/ME treated as a mental health condition is a very real risk, especially for those who are severely ill and who develop problems with eating and digesting food.
  8. How do you deal with Social Services and help them to understand the illness? Do you also need to re-educate any Care Company involved?
  9. Will showing the ‘Voices from the Shadows’ film to the professionals involved help? – It has often helped people understand more about severe ME.
  10. What other information should you give to people to help them understand your illness? How can you access it? Would the ME Association Purple Booklet be useful? or other material accessed via this website here. What would be most useful?
  11. Are there other advocates who could help? (especially if you have other diagnoses too – there may be other charities  – i.e. -for Hyperflexibility  – EDS –  POTS or Crohns, if you have these co-morbidities, who might help)
  12. If there are no charity advocates who can help you then should you contact an independent advocacy service? – to ask for someone to write letters on your behalf if  you can’t do it yourself.
  13. If you can’t do all these things yourself, or your carer can’t do it for you and you have absolutely no one to turn to, which charities might help you as a last resort?  Who can you trust to try to keep you safe – without risking ending up in an even worse situation – because that too is possible!

 

The current NICE and NHS confusion about the classification of  ME and CFS.

Prof Baker from NICE agreed, at a Forward ME meeting in June 2014, that the NICE Guideline for CFS/ME needs replacing – but that he can’t do anything about that!

Next, following a request from Jane Colby, pointing out that the NICE Guideline for CFS/ME couldn’t be listed under two different classifications, it was removed from the mental health listing – at long last! However, not only was it removed from the Mental Health listing, but it was also removed from Neurological conditions!!!! One step forward and another step backwards!

Earlier this year Prof Hooper wrote; “the WHO publicly confirmed that: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11” and that this has been accepted by the UK Parliamentary Under-Secretary of State for Health (Jane Ellison MP) who, on 25th February 2014 stated on the record: “The World Health Organisation is currently developing the 11th version of the International Classification of Diseases, which it aims to publish in 2017. No discussions have taken place between the Department and the WHO on the reclassification of ME/CFS, but the WHO has publicly stated that there is no proposal to reclassify ME/CFS in ICD-11”.

The Countess has followed this up with further questions on Nov 26th and 28th.http://www.meassociation.org.uk/news-too/ She tabled a question asking the Government “which organisations within the National Health Service or which represent members who provide services to the National Health Service are bound by the World Health Organisation’s International Classification of Diseases?” The answer from Lord Howe, “The United Kingdom as a member state of the World Health Organization (WHO) is expected to comply with the WHO Nomenclature Regulations 1967 and is required to use the most current version of the International Classification of Diseases (ICD-10) for reporting cause of death and disease for compiling and publishing mortality and morbidity statistics. As such all providers of National Health Service funded care are required to submit ICD-10 codes for national reporting.”

Postviral fatigue syndrome and benign myalgic encephalomyelitis  are classified by the World Health Organisation ICD-10 G93.3 under ‘other disorders of the nervous system’ and then ‘other disorders of brain.’

A completely different illness – ‘fatigue syndrome’ – is included under ‘other neurotic disorders’ and ‘neurasthenia’ at  F48.0. This listing specifically excludes post viral fatigue syndrome (G93.3). Another diagnosis which is sometimes being mis-attributed to patients suffering from ME is ‘persistent somatoform pain disorder ‘ F54.4.

 

We live in Gothic times!

An excerpt from a keynote presentation by Dr Iain Biggs at the ”Locating the Gothic” International conference, Limerick, Ireland, Oct.2014. It can be read in its entirety at http://www.iainbiggs.co.uk/2014/10/locating-the-gothic/

“Before I describe my second edgeland I need to ask how you understand Angela Carter’s claim that: “we live in Gothic times”.

I ask this because my second edge-land is, at least to my mind, the product of a literal enactment of the Gothic. It’s a zone marked by the terror imposed by people in authority onto others already rendered helpless by chronic illness. This is the Gothic zone inhabited by people suffering with ME, and by their families and carers. A zone created by the medical and psychiatric Establishments that neglects and abuses them and that is contested by the same therapeutic impulse that I find in aspects of the Gothic.

I think the award-winning film Voices from the Shadows http://voicesfromtheshadowsfilm.co.uk is animated by that same impulse. By the need to give a face to – and so to face – a situation that is almost unbelievably painful or terrifying. In the case of ME this is abuse – by authority figures whose actions exhibit the exact antithesis of the qualities they publicly claim to embody – of chronically sick individuals without power. In extreme cases these authority figures threaten patients with forcible hospitalisation or with being sectioned and placed in psychiatric units. They threaten this because patients, or their carers, refuse treatments that they know will exacerbate an already chronic illness. And of course individuals have died or taken their own lives when these threats are carried out.

The Gothic nature of the terror here lies in part in a grotesque but deeply institutionalised assumption. Namely that nothing ME sufferers say about their illness can be trusted. Their experience, self-understanding, their entire identity, is regularly dismissed out of hand by those professionally empowered to determine their treatment. Any articulation of their own reality that is at odds with the official view of their illness is, all too often, taken as evidence of a pathological desire to deceive, a wilful attempt to ‘stay sick’.

So I want to argue that ME sufferers live not only in Gothic times but also in a Gothic zone. They are trapped in this liminal zone and, as a consequence, constantly threatened with ‘zombification’ in the sense of being condemned to a kind of  living death. Threatened not simply by the chronic nature of the illness itself – as if that were not bad enough – but also by doctors, social services employees, psychologists, the realpolitik of academic research, and the fiscal policies of politicians. ME sufferers are subject to what is – paraphrasing Robert Miles on the Gothic – a process of violent deracination. They’re dispossessed in their identities, bodies and homes. Many are suspended, perhaps permanently, in a deeply frightening condition of violent personal and social rupture and dislocation – one that’s always, horribly, threatening to get worse.

My contention then is that ME sufferers – and of course innumerable others who suffer similar socially sanctioned abuse and neglect – literally live out, on a daily basis,the horror epitomised by a strand within the Gothic. This strand embodies an element of institutionalised sadism within our social system. Sadism animated by fear of cognitive dissonances that cannot be resolved or controlled by the professional authority of those who enact it. And behind this fear is the refusal to acknowledge a failure to progress, a failure to master disease. Ultimately this is a deeper fear – of regression, of the lifeworld as polyverse and, by implication, that Stengers’ divide is wrongly located, that the line between ‘progress’ and ‘regression’ has been wrongly drawn. So there’s a question here. Does all this need to be remapped, both in the context of polytheism as a distinct mode of thought and universal organisation, and of the presence of spectral and futural in the present as evoked by Derrida.

I want to suggest that paying closer attention to the two edgelands I’ve referred to might assist us to re-negotiate or translate across Stengers’ divide. It might strengthen our impulse to use image, the performative and text – both professionally and in day-to-day life – to move more freely back and forth across that divide. Why? So as to give a face to – to help us face – aspects of human suffering denied articulation and authenticity by our mono-ideational, single-minded concept of social evolution – of absurdities like ‘sustainable development’ – and the all-too-often sadistic psychosocial impulses these produces.

Notwithstanding claims from the progressive side of that divide, our world is still saturated with acute and terrible suffering – suffering that’s often denied articulation, subject to social repression, forgetting, marginalisation or denial. Perhaps this suffering – and the cognitive dissonances that it produces – can only be faced, only find a face, in the ambiguous, messy space between fact and fiction, image and data, regression and progression. The liminal fictive worlds that emerge from that space often appear ‘unnatural’. In the case of Toni Morrison’s Beloved this ‘unnaturalness’ includes horrific violence, infanticide, bestiality, and haunting by a being part poltergeist, part revenant, part succubus; yet also and always still, somehow, Beloved. The practical issue here is, then, how to articulate all this through forms of telling or showing that gives horror a knowable form without explaining it away – and as such both allows and requires us to face that horror.

Study finds brain abnormalities in chronic fatigue patients

Press release from Stanford University School of Medicine -

“Radiology researchers have discovered that the brains of patients with chronic fatigue syndrome have diminished white matter and white matter abnormalities in the right hemisphere.

An imaging study by Stanford University School of Medicine investigators has found distinct differences between the brains of patients with chronic fatigue syndrome and those of healthy people.

The findings could lead to more definitive diagnoses of the syndrome and may also point to an underlying mechanism in the disease process.”

The full news release can be read here at http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html

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

IMG_2450

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 but appear to have been removed.
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.