Invest in ME Newsletter February 2009

February 2009 Nr. 09/02

 Welcome to the February IiME Newsletter


International ME/CFS Conference 2009 News
Hillary Johnson at IiME Conference
Lost Voices update
A month in the Life of....Calendar of the Chronically Ill
News from WPI

IiME International ME/CFS Conference News

IiME would like to thank our European ME Alliance partners, the Irish ME Trust (, for once again helping us with the conference by sponsoring a speaker. This is the third year that IMET have assisted IiME in producing the International Conference and shown their characteristic generosity as well as vision. Producing the conferences relies on the generosity of the presenters in giving their time for free, and on healthcare staff, patient groups, patients and carers who attend the conference. The trustees of IiME willingly bear the bulk cost of the conference costs as we passionately believe that education around this illness is the key to removing biased and incorrect perceptions and generating new possibilities for research and lobbying. But without donations such as that from IMET it would be very difficult for IiME to carry all of the remaining costs of the conference alone. So, if you attend the conference on 29th May, please go up and say a thank you to Declan and Michael who will be  representing IMET.

The conference agenda is now completed and available here.

The conference has also received the maximum 6 points of CPD accreditation for the conference from the Royal Colleges.

We are very pleased to welcome back Dr Judy Mikovits to the conference - discussing the research and diagnosis of difficult and complex medical cases of ME.

Our thanks to ME groups who have taken our conference flyers. We have added an A4 poster also  (see flyers is available here).

As mentioned last month IiME is also self-funding some tickets for medical students as part of our newly established IiME Biomedical Research Fund. We are happy to receive suggestions on possible academic institutions whom you feel would benefit from an offer of free places for medical students. Please contact us at  

IiME would like to thank our European ME Alliance partners, the Irish ME Trust (, for once again helping us with the conference costs and again have shown their characteristic generosity as well as vision.

Producing the conferences relies on the generosity of the presenters in giving their time for free, and on healthcare staff, patient groups, patients and carers attending the conference. Without donations such as that from IMET it would be even more difficult to stage conferences like this. So, if you attend the conference on 29th May, please go up and say a thank you to Declan and Michael who will be representing IMET.

Click here for conference home page

Minister Invited to Conference

The invitation from the Whittemore-Peterson Institute last year to Mrs Ann Keen MP and Mr Alan Johnson (Secretary of State for Health) to visit their facilities in Nevada was never taken up. Indeed the Department of Health seem to have lost the invitation completely. No matter - if the secretary of state cannot get to the mountain , the mountain must come to the secretary of state - and both Mrs Keen and Mr Johnson have been invited to the conference on 29th May to meet and listen to Annette Whittemore and Dr Dan Peterson, founders of the WPI . We hope that on this occasion they will make time available to attend the conference. It would be interesting to see them promote their own department's constitution for England -[] has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population...

...We respond with humanity and kindness to each person's pain, distress, anxiety or need. We search for the things we can do, however small, to give comfort and relieve suffering.....

Author of Osler's Web at IiME Pre-Conference Presentation

On the evening before the conference Invest in ME are pleased to welcome the famous journalist Hillary Johnson to London. Hillary, author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic - see here - will be guest presenter at a pre-conference dinner with the speakers. We still have some tickets available for this dinner and we hope all of the conference presenters will be in attendance - please see here for details.

Hillary will be giving a presentation on how the US Centre for Disease Control has affected the way ME/CFS has been perceived, not just in America but around the world. For those who haven't read the book we would highly recommend it. There will also be an opportunity to buy the latest version of the book at the conference.

Lost Voices

Thank you to all those who have purchased our Lost Voices book and who have taken the time to comment on their impressions of the book.

We have set up a page (see here) for recording comments about the book. Some comments so far from people purchasing the book -

"The poetry and prose is so excellent, explaining so clearly that this disease has such devastating effects for both sufferers, families, friends and employers."

"I hope the book will be read by many people who are currently misinformed or apathetic, and that changes will start to take place. I found it very moving."

"I have never seen anything like it and we are all proud to be part of this landmark book. Thank you so very much for giving us a voice. You have done something truly amazing."

IiME have self funded and distributed over 150 free copies and many have gone to MPs, healthcare professionals and the media - including the health editors of all the national newspapers - in order to help change perceptions of ME.

If anyone would like to help us in this we have set up a Sponsor a Book page which allows one to purchase a book for someone else. IiME will post the book directly to the address supplied - more details here. Thanks to John, Joy and Natalie for helping already with this scheme.

The Lost Voices home page is here - click here.

NICE - Judicial Review - 11-12th February 2009


These guidelines are unacceptable.

NICE has failed in delivering anything worthwhile.

These guidelines are unfit for purpose.

NICE has shown itself unfit for purpose.

The conclusion to IiME's response to the NICE Guidelines for ME as documented in September 2007.

IiME have already set up a page devoted to NICE which includes our submissions and responses to the unsatisfactory guidelines [see here].

The Judicial Review is, in itself, evidence of the failings of NICE and is symptomatic of the problems with the NICE guidelines - problems which are at the heart of this ineffective and prejudiced organisation where vested interests influence the decision-making and where saving money seems more important than saving lives.

Whichever way the verdict goes in this case NICE is perhaps irrevocably damaged. Having lost the trust of the ME community, save of those ME organisations which have accepted government money to support government policy (see December newsletter - Section 64 Grants), NICE can no longer be entrusted with any role in arbitrating on the healthcare of people with ME.

Why NICE is Unfit for Purpose

A month in the Life of......Calendar of the Chronically Ill  

gives a harrowing account of living with severe ME - more proof that NICE and their guidelines and their sole recommendations for using CBT and GET provide nothing to help with people coping with or suffering from this illness. Click here.

The Judicial Review of NICE takes place in London on 11th and 12th February.

The Whittemore-Peterson Institute

Just as NICE may do irrevocable damage to the healthcare systems of other countries who adopt their approach to ME, so the Whittemore-Peterson Institute carries the beacon of hope for all those around the world waiting for advances to treat or cure ME with their strategic approach to biomedical research into ME. From the Reno Gazette Journal -

"People from across the nation and around the world who suffer from (ME) and other neuroimmune diseases are waiting anxiously for the opening next year of a new medical research center at the University of Nevada, Reno.

The $86 million Center for Molecular Medicine will expand the university's research capabilities into cancer and other diseases and house the headquarters of the Whittemore Peterson Institute, which offers hope in the form of clinical trials and treatment for people who suffer from such diseases as (ME), fibromyalgia and atypical multiple sclerosis."

To look at what the British government and NICE should aspire to then look no further than the developing Whittemore-Peterson Institute for Neuro-Immune Diseases.
With the founders of the WPI and the Research Director of the WPI all present at the conference on 29th May there will be lots to discuss.
For the news story click here.

Kenneth Hunter is chairman of the Department of Microbiology and Immunology at the University of Nevada, Reno, and Dr Judy Mikovits is the director of research with the Whittemore Peterson Institute for Neuro-immune Disease.


Donations to the WPI can be made here - click here.

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Last Updated: 04/05/2009