Skip to content

Science versus history: a snapshot of Invest in ME’s 10th annual conference

June 4, 2015

Introduction

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). 

************

Conference Information

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]

Conference highlights

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:-

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 during 2017. [Update: results of Phase 2 of the trial now available here]

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.

************

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.

************

 

 

 

9 Comments leave one →
  1. Craig Kall permalink
    June 4, 2015 11:50

    Thank you for putting this together, Valerie.

    Liked by 1 person

  2. June 4, 2015 12:18

    Reblogged this on Utting-Wolff Spouts and commented:
    ”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 Sonia 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.” Thank you, Valerie, for your excellent report.

    Liked by 3 people

  3. SCIENCE ME permalink
    June 4, 2015 16:25

    “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.”

    Valerie, I do not think that anyone who is not living with ME will really comprehend what you wrote; we do !

    A few weeks ago I was watching on TV how refugees on boats, sick and desperate people, were not allowed to come to shores, left drifting on the sea to die. It was shocking the whole world.

    Isn’t this exactly what is done to us, decade after decade?

    And the psych lobby is still standing on these shores, applauding this mistreatment which they are responsible for……. The cruelty of this situation is beyond the average human imagination.

    Thank you for your report.

    Anushka

    Liked by 3 people

  4. June 5, 2015 20:47

    Reblogged this on Sunshinebright and commented:
    A most enlightening personal report of the Invest in ME’s 10th annual conference.

    Liked by 2 people

  5. June 10, 2015 07:40

    Thanks Valerie for allowing those of us who couldn’t be there to hear what went on, and to read your emotions around being in an accepting environment…very moving.

    Liked by 2 people

  6. June 24, 2015 15:05

    Hi Valerie. Many thanks for your excellent report on the latest IIME Conference. Very enlightening. I work for the 25% ME Group, a national support group for the severely affected. I was wondering if you would allow us to use your report in our summer newsletter. Most of our members are completely housebound, some being bedridden as well and therefore cannot get along to any conferences or talks. I am sure they would be very interested to read your report. We have about 800 readers. Please let me know if this would be ok with you. Many thanks.

    Like

    • June 24, 2015 20:35

      Hi Linda – thanks for your comment.
      I’d be very happy for you to use my post in your summer newsletter (with appropriate credit and details of how to view the blog/link).
      The 25% ME Group is probably one of the most invisible and under-represented groups on the disability/impairment spectrum. I hope the post will be of use to some.
      Best wishes to you and the Group.

      Like

      • June 25, 2015 10:11

        Hi Valerie, thanks so much for responding so quickly and for your permission to reproduce you excellent article in our newsletter. I will of course include the appropriate credit and a link to your blog. I am sure many of our members (those who are able to use a computer) will find your blog very informative and interesting. Many thanks for what you are doing for the ME community. With very best wishes to you.

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: