Invest in ME Newsletter

INVEST in ME NEWSLETTER 

January 2008  Nr. 08/01a

Welcome to Invest in ME's January newsletter.

The International ME/CFS Conference 2008
Our agenda for the International ME/CFS Conference on 23rd May 2008 is now nearer completion and will soon be available at [http://tinyurl.com/yoxz3v].

The theme of Sub Grouping and Treatments of ME/CFS is one that we feel is appropriate for the current status of research and awareness regarding ME/CFS. It is now time to differentiate between various possible aetiologies, if possible, and there is enough good quality research and experience to enable this to occur.

Dr John Chia's research is validating the work the late Dr John Richardson was doing for many years regarding enteroviruses. Enteroviruses cause acute respiratory and gastrointestinal infections, with well documented tropism for the central nervous system, heart and muscles. Dr Chia's recent analysis of 200 patients identified a number of potentially treatable infectious aetiologies, enteroviruses being causative possibly in more than half of the patients.
Other infections which have been linked to ME/CFS are Epstein-Barr virus, cytomegalovirus(CMV), parvovirus B19, Brucella, Toxoplasma, Coxiella Burnetti, Ross river virus and Chlamydia pneumoniae.
Dr Chia's latest research, which appeared in the Journal of Clinical Pathology last year, was heavily publicised (see this link[http://tinyurl.com/ysvdrf] and this link[ http://news.bbc.co.uk/1/hi/health/6990957.stm ]).

Dr Martin Lerner and his team have concentrated their efforts in accumulating evidence for persistent herpes virus infection (Epstein-Barr virus, Cytomegalovirus and Herpes virus 6), singly or in combination. Dr Lerner has extensive experience of treating patients with specific antiviral medicines. More details can be seen from Dr. Lerner's web site at http://www.cfsviraltreatment.com/  including a video presentation from 2007 - click here[http://www.cfsviraltreatment.com/video/index.html].  Dr Lerner's experience spans many years and he has published extensively on links to cardiomyopathy in ME/CFS patients (see here http://www.ncf.ca/ip/social.services/cfseir/naneir/historical/heart.html]) and has researched for many years on the use of antivirals for ME/CFS - which was validated by research performed by Dr Jose Montoya at Stanford last year.

Dr. Leonard Jason has been a prolific researcher in the definition and diagnosis of ME/CFS and has produced research which demonstrates that subgrouping is possible using laboratory tests that are readily available and can easily be ordered by primary care physicians. Dr Jason was scheduled to speak at our 2007 conference (and contributed an article in our 2007 conference Journal of IiME - see here[http://tinyurl.com/2mvnzs]) so we are particularly pleased to welcome him this year. Dr Jason's home page is at http://condor.depaul.edu/~ljason  and contains details of his extensive research. 

Dr. Irving Spurr has been involved in treating ME patients for over thirty years in the UK. The respected John Richardson Research Group based near Newcastle (of which Dr. Spurr is chairman) is famous for its work (see references in this article [http://tinyurl.com/24f8z4]).

Dr Julia Newton's work on autonomic dysfunction will also show another grouping in ME/CFS. Her interest is in understanding the pathogenesis of fatigue - more details of Dr. Newton can be seen at the Newcastle University web site here[http://www.ncl.ac.uk/icm/people/profile/j.l.newton].

Dr. Jonathan Kerr's recent published research shows 7 distinct sub groups of ME/CFS (Seven genomic subtypes of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME): a detailed analysis of gene networks and clinical phenotypes - see here[http://tinyurl.com/2965uv]). Dr. Kerr's work is funded by CFS Research Foundation - click here[http://www.cfsrf.com/].

Last year Invest in ME invited Annette Whittemore to come to London to describe the new Whittemore-Peterson institute being created in Nevada. Dr Dan Peterson also participated and the DVD from the conference shows the ambitious plans for the WP Institute as it moves to treating ME/CFS. We are honoured to welcome the WPI's Research Director Dr. Judy Mikovits to talk about the WPI's future research. Dr Mikovits herself has co-authored over 40 peer reviewed publications that address fundamental issues of viral pathogenesis, haematopoiesis and cytokine biology. For more information on the WPI see our earlier article here[http://www.investinme.org/Article-085%20WPI.htm].


ME/CFS Support Groups
Once again we would ask all ME/CFS support groups to send as many delegates to the conference as possible and to try to get as many local healthcare staff to come along. We hope to announce CPD accreditation for the conference soon.

We would also like to ask support groups and friends of IiME to take our flyers/posters to local GPs/consultants or place in hospital waiting rooms so that more people can become aware of this important conference. IiME will send out flyers/posters or other details to any groups who wish to include them with newsletters to members. Contact us if you would like us to send you anything.

Our discounted tickets, including the Sponsor a GP scheme, are in force until 15th March.
More details are available here [http://tinyurl.com/ytwgzd] and our conference flyer is available to be downloaded from here[http://tinyurl.com/2lacjd]. We also have an A4-poster available here[http://tinyurl.com/2hnxlk].

So the IiME conference on 23rd May, in a venue which is the best we have had, will be a showcase of important science and research into ME/CFS.

Invest in ME are extremely excited about this conference and feel this will provide valuable impetus to progress knowledge and awareness of the biomedical origins of this illness.

The quality of the speakers and the extensive data associated with scientific research from our presenters is a powerful and valid statement to the government, Department of Health, NICE and the MRC that a national strategy of biomedical research into ME/CFS, performed by biologists, micro-biologists, neurologists, endocrinologists, gastroenterologists and others will offer the best hope of treatments and cure being found.
We welcome delegates from across the world to participate again this year. We hope as many as possible will be able to join us.

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'Lost Voices' - The ME Book Project
Invest in ME are pleased to announce a new project which we hope will highlight the plight of people with ME and their families and give them a possibility of being heard.

The name 'Lost Voices' refers both to the fact that people who are severely ill with ME are generally not in a position to make themselves heard, and also to the way that the  prejudiced denial of ME - as an 'aberrant belief' rather than a devastating physical illness -has meant that often others are incapable of actually hearing and seeing what is being said and shown - our voices drop into a void.

The book will probably be around A4 landscape size with a laminated card cover and will be largely in colour.
A travelling exhibition will be put together, of pages and work from the book, to be shown primarily in hospitals. Art has the power to move people, and combined with documentation may bring the situation more vividly to life.
The project is particularly intended for people affected by severe ME- whether as sufferers, carers or families.
The aims of the book and exhibition are -

  a.. To provide an opportunity for people who are usually invisible and unheard to speak for themselves, so that their situation can be seen and understood more clearly.
  b.. To show evidence of the devastating impact this physical disease has on individuals and their carers and families.
  c.. To bring to more public notice the plight of ME sufferers.
  d.. To help change a widespread lack of comprehension based on general misinformation, vague definitions, guessed numbers and statistics, to the development of empathy and concern for those who are so ill.
  e.. To educate the medical profession, the public and others such as wider family.
  f.. To encourage a sense of community among ME sufferers and those supporting them.
It will contain pages consisting of a mixture of writing and largely photographic images. The writing and photos will be provided by carers, families and , as far as possible, people with ME themselves.
There will be individual pages and double spreads or groups of pages representing different families, showing the impact of the illness on all family members and sufferers and carers.

The photographic material will have various purposes. It may be documentary; may contrast or juxtapose images to make a stronger point: or photos may be used  by the artists, to respond to, work with and combine in a creative, poetic and evocative way- to make images with a more powerful emotional resonance.

We also wish to incorporate a short section of informative material on ME written by experts.

The ME Book Project - Lost Voices will be run by Natalie Boulton whose idea this is.
We hope to show progress and examples from the ME Book Project at the IiME International ME/CFS  Conference in London on 23rd May.

IiME will be announcing more details of the project in due course. To enquire further and/or to participate in the project please contact IiME - click here [http://www.investinme.org/IiME%20ME%20Book%20Project%20Home.htm].

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IiME and MHRA
Invest in ME has been invited to join the MHRA (Medicines and Healthcare Products Regulatory Agency) - and we have accepted. The MHRA is the government agency responsible for ensuring that medicines and medical devices (or equipment) work, and are acceptably safe.
IiME will supply its supporters with information from the MHRA when that body needs to alert as many appropriate people, as quickly as possible, regarding crucial MHRA safety information, or new facts about the effects on patients of medicines/devices.

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Parliamentary APPG for ME/CFS
The next meeting of the All Party Parliamentary Group on ME/CFS is scheduled to meet on 22nd January in Westminster. Present at the APPG meeting will be Mrs Ann Keen MP who has responsibility for ME/CFS.
Invest in ME have been trying to engage the Secretary of State for Health - Mr Alan Johnson - and Mrs Keen in order to persuade them of the need for a national strategy for biomedical research into ME/CFS. We have invited Mrs. Keen to our London conference in May. We have also several friends of IiME who have similarly tried to make contact - all to little avail at the moment.
So IiME have tabled eight questions for Mr. Des Turner - chairman of the APPG -  to put to Mrs Keen at the next APPG meeting. Our letter has been posted with recorded delivery in time for the APPG meeting.
These questions can be seen in our letter - click here [http://tinyurl.com/2dgdw7].
We hope that our questions are put before the minister and that the minister will be able to answer these points.

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Essential investigations for people with ME/CFS?
We are grateful to Margaret Williams for sending an article to Invest in ME regarding inflammation in ME/CFS.

  "As NICE is now in the process of contacting selected people asking for their input on the advisability of it producing guidance on the use of Ampligen in "CFS/ME", might NICE also be persuaded to seek the input of experienced vascular biologists on the advisability of it recommending specific testing for inflammation in ME/CFS?"

The full article may be read here [http://tinyurl.com/ys35yd].

Best wishes to all
Invest in ME

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With all this medical backup for a biological basis for CFS, only a complete moron could continue to dispute the validity of the disease.  Yet there are still those who shut down their brains as soon as they hear the word "CFS", because they are so convinced that it's all in our heads that they cannot even process the notion -- much less the evidence -- that CFS is a very real, very devastating disease.