Invest in ME Newsletter October 2006

No.06/07 / October 2006
Welcome to the Invest in ME Newsletter for October 2006.


IiME and ME Research UK
ME Awareness Month
2nd International ME Conference
Have a Cuppa
NICE Guidelines
ME and YouTube
ME Story

Invest in ME are pleased to announce the collaboration with ME Research UK on ME Awareness Month 2007.

In view of the importance of ME Awareness Month for everyone, the intention is to open and close it with a bang............hence the awareness-raising Invest in International ME Conference 2007 in London to OPEN the month.

We invite all groups across the UK to join with us to make May 2007 a very special and eventful occasion.

The IiME International ME Conference 2007 will be in London on 2-3rd May 2007.

More details will be available over the coming months.


Here is the press release for the ME Awareness Month -


A national campaign throughout the UK aimed at raising awareness of the neurological illness Myalgic Encephalomyelitis (M.E.) and publicizing events to raise funds for biomedical research into ME.

Myalgic Encephalomyelitis (M.E.) is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3). With at least 250,000 sufferers of ME in the UK alone, many of them children, ME is estimated (by parliamentary EDM 260) as costing the UK economy 3.5 billion per year and the true figure may be even greater. No public funding of biomedical research is currently taking place in the UK so biomedical research projects are funded solely by the work of ME support groups and individuals.

At present there is no medical diagnostic test for ME and no known specific treatment or cure.

Despite the impression often given by the press and psychological professionals, ME is not a psychological illness; psychological investigations (which have had the lion's share of research funding in the past) cannot uncover its cause and psychological therapies cannot provide a cure.

The varying symptoms experienced by many severe ME sufferers may include: -

visual problems, vocal/muscular limitations, general chronic weakness of limbs, cognitive problems such as memory loss & concentration difficulties, problems with balance and fine motor control, muscle pain, malaise, hypersensitivity, sleep & temperature disturbance,  cardiovascular symptoms,  digestive disturbances,  neurological disturbances

ME is a multi-system illness and requires investment in biomedical research to provide treatment and a cure. The recent case of Sophia Mirza, who died from ME, shows the urgency of funding research into treatments and in finding a cure. ME is five times more prevalent in the UK than HIV/AIDS.

During May 2007 events up and down the country will raise awareness of ME. Two ME charities – ME Research UK and Invest in ME are joining forces to arrange and publicise conferences and Have a Cuppa events for ME Awareness Month 2007.

On 1st-2nd May 2007 Invest in ME will be hosting the second IiME International ME/CFS Conference in London. ME Research UK will be hosting their conference in Edinburgh on 25th May 2007.

Other events around the world will be announced in the months leading up to May 2007 – with ME Awareness Day (12th May) being the focal point for the month. Our aims are -

1. Funding research:  With no public funding of biomedical research into ME we are hoping to attract more funding for research activities coordinated by ME Research UK. We hope that the government will recognize the high-quality research being carried out by scientists being funded by ME Research UK.

 2. Raising awareness: ME needs more awareness from the public, politicians and healthcare staff. It is now the leading cause for long term absence from school. ME Awareness Month will be an opportunity to raise the profile of ME and allow more knowledge about the illness to be provided.

3. Providing a voice: 25% of people diagnosed with ME are severely affected – house-bound, often bed-bound, left with little help from the medical community, often made to struggle to obtain benefits and left to an uncertain and debilitating future.


2nd International IiME ME Conference 2007

The 2nd INTERNATIONAL IiME M.E. Conference 2007

2nd-3rd May 2007 in London, UK

Our conference pages for the 2nd International IiME ME Conference 2007 have now been set up - see here.

We still have some more detail to add as we prepare for the conference and more details will be available in our next newsletter. A separate web page has been set up as well as a new mailbox - ME Conference 2007.

The venue for the ME Conference 2007 is the same as for the 2006 conference held this year in May - One Birdcage Walk in Westminster, London.
Next year we are pleased to announce world-renowned speakers on ME who will speak at the conference and these include Professor Malcolm Hooper, Dr. Byron Hyde, Dr. Jonathan Kerr, Dr. Sarah Myhill, Dr. Kenny De Meirleir, Dr. Abhijit Chaudhuri and Professor Basant Puri. Our conference topics are planned to be around -

  • Epidemiology

  • Diagnosis

  • Treatments and Protocols for ME

  • Research

  • Care

  • Nutrition

  • Law

As we refine the agenda over the next month we are hoping to establish more interest as we call for papers from researchers, scientists, doctors and healthcare staff who are interested in participating and/or presenting.

With the first day of next year's conference given over more for healthcare staff working with patient groups, people with ME and ME support groups - and the second day for medics,  delegates will be able to choose to participate for one or both days. Guests from abroad are most welcome and IiME will do our best to make next year's conference as enjoyable an experience as was this year's - which was thanks mainly to the delegates themselves.

As we work with ME Research UK to make both conferences, and ME Awareness Month, a success we welcome the support of other ME groups around the UK, and abroad, who are interested in furthering the recognition of ME as a serious health issue and who would like to support  the Conference.

If you aren't planning on joining a specific event on ME Awareness Day 2007 then why not help organise an awareness event using the Have A Cuppa For ME format? This works well enough for McMillan's Cancer coffee mornings - and since late 2005 almost 5000 has been raised in this way.

Details can be found at -

Proceeds would go to biomedical research funding - one of the charities actively funding biomedical research, such as ME Research UK or CFS Research Foundation.

The National Institute for Health and Clinical Excellence (NICE) have recently published their draft document for clinical guidelines. The document is being developed for use in the NHS in England and Wales regarding chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS/ME).

IiME are reviewing the document. We have been so concerned by the initial review that we have asked for, and been granted, a stakeholder place so that we can formally comment on these guidelines.

Initial thoughts show a lack of vision in analysis and scope and seems to include as wide a range of fatigue states as possible rather than providing a useful set of guidelines for a neurological illness. As these guidelines will be seen as an important physician's aid for the future then it is extremely important that people with ME (both current patients and the unfortunate, inevitable future patients) are represented by accurate and useful information rather than old-style, out-of-date myths harvested from years of neglect and apathy and which will only serve the same vested interests who have been controlling the debate on ME for far too long.

Our page for comments on the NICE guidelines can be found here and will be updated with our review as the weeks go on. This NICE document is due to be output in its final format in April 2007.

If you have comments you would like us to include in our submission to NICE then contact us here.

Over the next 2 weeks ME-carer Greg Crowhurst is compiling a carers diary to try and show the reality of living with someone who has severe ME.

Details can be found at

We still have stories of severe ME also - click here 

ME Story

"The months passed still unwell, unable to work and I was made redundant from my job. I took them to court for unfair dismissal and won my case. The stress set me back and combined with battling doctors for more tests and trying to convince them I was not depressed but ill was even more distressing.
You desperately want to get better, get back to work, to the life you had before, to socialise, to be able to read and cook and have conversations without your words getting all mixed up. To get through the day without collapsing on the sofa exhausted.

Thanks to Vikki for this story. Read more of Vikki's story here.


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