Invest in ME are an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
They have links nationwide and also internationally. Invest in ME are one of the founding members of The European ME Alliance.
In May 2015, they held their 10th Annual Conference which attracted presenters, researchers, physicians, patient groups and journalists from around the world. This conference in effect brings to light that ME is actually entering a period where sensible and credible research is being planned.
I received a full copy of the Journal which I have also published on this site, but at 56 pages, I think it may be a little too much to plough through! Maybe something to dip in and out of as energy permits! However, I also sought and gained permission to re-publish an article written by Valerie Eliot-Smith who attended the conference, and gave her views on how it went. Thank you to Valerie, and I hope you gain an insight as to what’s going on currently. I would also recommend that you visit http://www.investinme.eu/ to find out further information should you wish.
I am a UK lawyer who also has a background in media and communications. I have lived with ME/CFS since 1981 but continued to work and study until 1999 when other health problems disabled me completely.
I am a part-qualified psychotherapist and Visiting Scholar of postgraduate law. I focus on legal issues which are integral to the democratic process and civil society, especially Freedom of Information, Privacy/Data Protection, Intellectual Property, Cyberspace, Media and Human Rights. I research and campaign from home as I am frequently too ill to go out.
Science versus history: a snapshot of Invest in ME’s 10th annual conference
June 4, 2015
tags: CFS/ME, Chronic Fatigue Syndrome, Fluge and Mella, IiMEC10, Invest in ME, Mady Hornig, ME/CFS, Myalgic Encephalomyelitis, NCNED, Rituximab, Simon Carding, Sonia Marshall-Gradisnik, UK Gut Microbiota Project
On Friday 29 May 2015, the British charity, Invest in ME, held its 10th annual conference at the Institution of Mechanical Engineers in central London. It followed on from the two-day Biomedical Research Colloquium on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The scientists who were speaking at the Conference had already had the benefit of the Colloquium in which to discuss recent research developments and foster burgeoning relationships within the international ME/CFS scientific community.
I have lived with this illness for thirty-five years. A conservative estimate puts the number of ME/CFS patients worldwide at twenty million, although diagnostic uncertainty means that this figure could be wildly inaccurate. Despite having been well-known and documented for eighty years, the disease is still not widely recognised. There is no effective diagnostic pathway or treatment. Patients are still routinely neglected and abused; this results from the disproportionate power of the psychiatric lobby (especially in the UK) which continues to trumpet the highly inappropriate psychosocial model of treatment, involving Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET).
Details of the Conference can be found here. If you scroll down a little, you will see the Conference Schedule. The line-up was impressive.
Some attendees live-tweeted or compiled summaries. I am indebted to all those who did this as it created an invaluable aide-memoire and enabled me to write this post. The Phoenix Rising team tweeted here and Cort Johnson, using PR’s tweets, compiled this (slightly selective) summary in record time. Invest in ME videoed the whole conference (as always) and you can pre-order the DVD here.
[IT’S NOW SEVERAL DAYS LATER: post-Conference PEM is taking its toll]
The whole day was a highlight but these were my particular favourites:
Professor Mady Hornig kicked off the proceedings with her abundant energy, charm and formidable intellect. She outlined her “three strikes hypothesis” ie. the intersection of genes, environment, and timing causing chronic illnesses such as ME/CFS. The work of Professor Hornig and her colleagues at NYC’s Center for Infection and Immunity at Columbia University’s Mailman School of Public Health has recently produced ground-breaking research in the understanding of this disease. Details of the two recent studies can be found here and here.
Later in the morning, Professor Sonya Marshall-Gradisnik took the podium. She and her team at Australia’s National Centre for Neuroimmunlogy and Emerging Diseases (NCNED), located at Griffith University on Queensland’s Gold Coast, have also been coming out with a series of studies, revealing differences in immune function between subsets of ME/CFS patients and healthy controls. The NCNED has been building on years of work in the field which therefore demonstrates a reassuring maturity; full details of their most recent publication can be viewed here.
Professor Marshall-Gradisnik’s commitment and compassion shone through as she spoke. Halfway through her presentation, I found that I was welling up – and yes, tears were shed briefly.
Moving on: pre-lunch, Professor Simon Carding of the UK’s University of East Anglia (UEA) introduced a group of researchers who are working on projects supported by Invest In ME. These young academics are of vital importance to the future of UK research into ME/CFS. They are:-
- Daniel Vipond, PhD candidate at UEA, working on the UK Gut Microbiota Project at the Institute of Food Research (IFR)
- Navena Navaneetharaja, UEA medical student studying for a Masters in Research degree at IFR
- Bharat Harbham, UEA medical student studying for a Masters in Research degree at IFR
- Fane Mensah, PhD candidate at University College, London (UCL) in the laboratory of Dr Jo Cambridge working on the Rituximab project
Each researcher introduced themselves and gave a short exposition of their Invest in ME-sponsored work. There were then some questions from the audience, a couple of which seemed unnecessarily confrontational. There is a time and a place for academic challenge; this was not it. The students were there to outline their work to the Conference; they all responded to the questions intelligently and with good humour, robustly assisted by Professor Carding. I wish them all the best for the future.
Around mid-afternoon, my level of discomfort and pain was becoming too much so I took an extended break from the Conference auditorium. In so doing, I missed the presentation by Dr Claire Hutchinson of the UK’s University of Leicester entitled “Biomarkers: Visual Processing and ME”. Subsequently, I learnt that some people found this to be a surprisingly interesting and informative session on an emerging area of study; this is the link to a description of her work here.
The final session of the day was from Professor Olav Mella and Dr.med Oystein Fluge from Haukeland University Hospital in Norway. Professor Mella and Dr Fluge are conducting a clinical trial of the immunomodulatory drug Rituximab as a possible treatment for ME/CFS, having stumbled upon its potential in 2007 whilst treating cancer patients. The results of Phase 2 of the trial will be published within the next few weeks; Phase 3 is expected to be completed in mid-2017.
The utter simplicity and clarity of Professor Mella’s presentation was stunning; the design of the trial demonstrates the utmost transparency, integrity and scientific rigour. And again we were treated to that special ingredient: care and concern for patients and their welfare.
So – highlights of the highlight which was Professor’s Mella’s session:
- There will be sub-studies within the trial including endothelial dysfunction and gastro-intestinal issues
- They are considering the possibility of testing Cyclophosphamide for those who can’t tolerate Rituximab, which is highly toxic. Cyclophosphamide is cheaper than Rituximab so could be the drug of choice. They have recently commenced a 40-patient study. Very sick patients could be included in that trial (at last!)
- Objective measures included to monitor changes in activity levels (electronic armbands to be worn for 7 days pre- and post- treatment)
- He addressed the political significance and impact of this trial worldwide for patients
- He concluded by thanking Invest in ME for inviting him; he then thanked patients because “most of our ideas come from listening to what the patients tell us“
- Finally, and best of all: not once did Professor Mella refer to the illness as anything other than “ME”. He gets it.
Phase 3 is expected to be completed during 2017. [Update: results of Phase 2 of the trial now available here]” – and this is the link http://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0129898
A low point
During the afternoon, Professor Betsy Keller gave a presentation entitled “Activity guidelines to avoid symptom flares”. Professor Keller has done some interesting work on the Two-day Exercise Test and I was looking forward to hearing from her. After some introductory remarks, we were invited to participate in a “core stability” exercise – whilst standing, where possible. By this stage in the day, that was not an option for me – or a number of others, from what I could see. It was entertaining and probably very beneficial for those who could do it as this was inevitably a very sedentary day for most attendees. Nevertheless, I felt that this session did not chime well with the general tone of the Conference which was focussed on biomedical research, not exhortations to exercise.
Science versus history?
At this juncture, one would normally go down the “Wonderful day! Hope springs eternal [smiley face]” route. However, the weight of history is a heavy burden and I would find that approach disingenuous. The breadth and depth of the science which this Conference represented is very heartening; perhaps it will bring us closer to the tipping-point whereby it can successfully challenge the tragic history of ME. That will not retrieve the lost lives of generations of patients – but it might give rise to grounds for cautious optimism about the future. Eventually.
There was one aspect of the day which did – fleetingly – alter my perception. In fact, I’ve already mentioned it earlier in this post, when I referred to the wave of emotion which I experienced during Sonya Marshall-Gradisnik’s presentation. For just one day, I was surrounded by people who understood the illness. I didn’t have to explain it to anyone, nor justify my lifestyle nor defend myself against the hostility of deniers and sceptics. For a few hours, not only was I permitted to be ill but my life was positively validated and my day-to-day experience reflected back to me by respected scientists, clinicians, patients and carers. It was an extraordinary and life-affirming experience.
Presumably, patients with a “real” illness can take such acceptance of their condition for granted. Until such time as that same full acceptance is achieved for ME patients, hope will remain a luxury which I cannot afford. There is only so much disappointment which any human being can tolerate in one lifetime.
Thank you for reading this. I wish you well.