Friday, 24 February 2012

The 7th Invest in ME International ME/CFS Conference

Building a Future for Research into ME

Clinical and Research Updates in Myalgic Encephalomyelitis

Conference Description

This will be the seventh annual Invest in ME biomedical conference on myalgic encephalomyelitis (ME/CFS) and will be fully CPD-accredited.

The conference will be held on 1st June 2012 in Westminster, London and builds on the successful biomedical research conferences organised by Invest in ME in previous years.

Invest in ME aim to raise awareness of the neurological illness myalgic encephalomyelitis – an illness which is 5 times more common in the UK than HIV/AIDS – yet which has had comparatively little funding spent on biomedical research.

The Invest in ME International ME/CFS Conference 2012 brings together leading clinicians and researchers in the fields of general medicine, diagnostics, immunology, Central Nervous System (CNS) Inflammation and clinical trials to discuss the central issues and current challenges involved in the diagnosis, treatment and management of patients with myalgic encephalomyelitis.

One of the most important aspects at previous IiME conferences has been the creation or resumption of the unique networking opportunities available with some of the most renowned experts on ME/CFS and related fields in the world.

How can we ensure ME research and patient care benefit from the latest thinking in ME/CFS and related areas of research?

What is the best way forward?

Join our programme of outstanding speakers for insight into these issues and more at the 7th IiME Conference.

Benefits of attending -

- Increase your understanding of diagnosis, treatment and management of ME/CFS

- Explore current and future biomedical research into ME/CFS

- Assess the role of immunological markers in ME/CFS

- Learn about ongoing clinical trials using Rituximab to treat ME/CFS patients

- Learn about inflammation in the CNS and its contribution to Neurological Disease

- Learn about the function of the immune response in the gut

- Share and exchange ideas with the leading practitioners in the field

Thursday, 16 February 2012

My Friend

This is another poem from "Songs in the Night", a collection of Christian poems by Michael R Abbott; used with permission.

My Friend

Jesus is my soul's salvation,
He will keep me to the end;
King of kings and Lord eternal,
Yet He deigns to call me friend.

Once upon the cross He suffered,
Once for sinners shed His blood,
Once He died it is sufficient:
Oh the precious cleansing flood!

Jesus lives: the powers of darkness
Could not keep Him in the grave.
Having borne for me the judgment,
He rose up with power to save.

Jesus reigns, the King of heaven,
Saviour, Victor, God's own Son:
For His people interceding,
Till the course of time is run.

Then in heaven I shall be with Him,
All His promises fulfilled.
Oh the bliss to be with Jesus
When the storms of life are stilled.

"For Christ also hath once suffered for sins, the Just for the unjust, that He might bring us to God, being put to death in the flesh, but quickened by the Spirit" (1 Peter 3 v 18).

Wednesday, 8 February 2012

I need Thee every hour

As I reach 21 years of ME, another favourite hymn -

I need Thee every hour,
Most gracious Lord;
No tender voice like Thine
Can peace afford.

I need Thee, O I need Thee!
Every hour I need Thee;
O bless me now, my Saviour!
I come to Thee.

I need Thee every hour;
Stay Thou nearby;
Temptations lose their power
When Thou art nigh.

I need Thee every hour,
In joy or pain;
Come quickly and abide,
Or life is vain.

I need Thee every hour;
Teach me Thy will,
And Thy rich promises
In me fulfil.

I need Thee every hour,
Most Holy One;
O make me Thine indeed,
Thou blessed Son!

Annie S. Hawks, 1835-1918

“Bow down thine ear, O LORD, hear me: for I am poor and needy” (Psalm 86:1).

Saturday, 4 February 2012

Voices from the Shadows

Please buy this DVD! It has been made to educate people about the reality of severe ME. It is not a Christian film, and I would not advise showing it to children or to those newly diagnosed with the illness, but I would certainly recommend it. For those who believe ME to be simply “chronic fatigue”, the contents will come as something of a shock.

About the film -

Who made the film?

The film has been made by Natalie Boulton and Josh Biggs – the mother and brother of a severe ME sufferer. Josh is a young professional freelance editor and cameraman. Natalie was an artist/teacher and is a full time carer for her daughter who has been ill for over 20 years. This is the first time we have worked together on a film and we are both first time director/producers. The making of the film has been entirely financed by our family and we are grateful to unpaid help we have received. The music was written, recoreded and kindly donated to the film by Emmy nominated composer David Poore . Full credits are here

People have asked us if we made the film for a particular charity, as we did with the book ‘Lost Voices from a Hidden Illness’, but we did not. It is an independent project which we felt compelled to make as a family, to try to help make a difference to the lives of so many wonderful young, and not so young, severe ME sufferers. We need you to help by using the film to inform others about this situation. Please buy copies of the film to give to others, particularly to those professionals who could help change the lives of so many people living in fear and isolation. We are not in any way making a profit from this project, we just need others to help too please.

Why did you make the film?

‘Voices from the Shadows’ was born of utter desperation. Having struggled for nearly 20 years to care for my daughter, I found that we were caught in a trap.

Like most patients and their families I believed the medical profession had this disease in their sights and was working at a cure. With an awful shock, after attending Invest in ME and MERUK conferences, I realised that was not the case. NOTHING – absolutely NO biomedical research was being funded by the Medical Research Council in the UK and international biomedical research was just being totally ignored. The illness, which had been taken seriously, identified and studied for decades, had just disappeared off the radar. Instead the name had been changed and research funds were being allocated to psychiatric/behavioural management, using up millions of pounds that could have been used to more fully identify the organic causes and develop more effective treatments.

The illness that trapped my daughter and her friends had been ‘disappeared’!

This was being supported by government policy and the media had been doing an excellent job of trivializing the illness and denigrating patients. Nowhere in the public domain was there any sign of the terrible severity of the illness I saw driving many intelligent, creative, positive and courageous young people, into lives of devastating dependency, isolation, pain and steadily deteriorating health. Not only that, but the abuse suffered by some patients who were being harmed by professionals was going totally unrecorded and unnoticed. Patients were, and are, dying invisibly…..

Between 2007-9 I worked on a book for the charity Invest in ME – ‘Lost Voices from a Hidden Illness’ – which started to give patients a ‘voice’. This opportunity was particularly appreciated by young people who had been severely ill for 15-20 years or more; since childhood. I was helped by my son Josh who taught me the computer techniques I needed to carry out the project.

We realized that one of the problems is that severely ill patients with ME become completely isolated and invisible to the world at large. Few people see them, they are too ill to take part in most research projects and so very few people are aware of the severity and nature of the illness. When ‘Lost Voices’ was finished we realized that more needed be done. Josh offered to help with making what was intended to be a short film using his professional expertise and his close involvement with the subject. We started filming, not really knowing what direction the film would take, but our work on ‘Lost Voices’ did not prepare us for the shocking revelations that came to light when we spoke to patients, carers and doctors – of the abuse of children and patients. The project grew and evolved in a direction we hadn’t foreseen. As with ‘Lost Voices’ we worked very closely with the families in the film, many of whom we had known for years, to make sure they were accurately represented and in a collaborative effort we were given access to personal documentation which had not previously been publicly available.

To buy the DVD please go to