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May 2008 Nr. 08/05

Invest in ME's May 2008 newsletter.

IN THIS ISSUE
International ME Awareness Month
International ME/CFS Conference 2008
The Whittemore-Peterson institute
The HHV-6 International Symposium on Viral infections in CFS
DVD Offer
Short Takes on ME
Journal of IiME
Around Westminster - Questions in Parliament
and what of Sophia?

International ME Awareness Month 2008

We have just a short newsletter this month. May is ME Awareness Month - an opportunity for raising awareness of ME around the country, and around the world. Earlier in the year Invest in ME attempted to initiate a coordinated, international effort for May by contacting many different groups around the world. Although we weren't successful we still hope that enough is happening in May to build on the effort by many people over many years to use every opportunity to publicise the need for more urgency being given to people with ME and their families. Another option is provided by this link from Vannessa Mitchell.

The IiME London conference fittingly comes at the end of the month to provide a wonderful finale of biomedical research from some of the leading experts on ME in the world.

And no ME Awareness Month would be complete without another attempt by IiME to get Google interested in the illness and honouring the unnecessary struggle which people with ME are enduring by making a Google-Doodle - see here. We have put in our annual request though we doubt if our third attempt will be any more successful than previous ones.

We wish everyone organising or participating in any awareness event the best of luck and hope to see many in London on 23rd May.

The International ME/CFS Conference 2008 - Sub Grouping and Treatments of ME/CFS and The Journal of IiME

We are glad that there is now more talk of the need for sub grouping of ME. This was made into our theme for the conference already last year when were planning the event and the speakers at the conference

IiME are happy to publish the 3rd Journal of IiME during May in time for the International ME/CFS conference. Included will be a conference pull-out section.
Although our hope has been to supplement the newsletter with this publication as often as we can - at least four times a year - due to lack of funding we seem to be able to produce it only twice per year at the moment. We hope this will change and that we can eventually raise funds to print/distribute the Journal to healthcare staff and others in due course.
IiME is run by volunteers for free and we attempt always to make available everything for free, or at cost price. The Journal will remain free from our web site.

In Volume 2 Issue 1 of the Journal we hope to have contributions from Japan, Norway, Australia, Sweden, Holland, USA and Korea as well as information for delegates at the IiME conference. Our thanks go to our contributors who have provided more useful information. The Journal will be part of each delegate's conference pack at the International ME/CFS Conference and made available to all after the conference.

An extract from the Journal - concerning a potential sub group -

Research

An academic dissertation by Jaana Renko from Tampere University, Finland entitled Bacterial DNA Signatures in Arterial inflammation (2008) found signs of past bacterial infections in arterial plaques.

Atherosclerosis develops over time starting often in childhood. Plaques develop in arterial walls resulting in narrowing of blood vessels. The plaques contain chronic inflammation and it has been thought for some time that bacteria are involved in causing the inflammation. The most identified of these bacteria are Chlamydia pneumoniae and oral bacteria.

Jaana Renko examined arterial samples from autopsies and surgeries and found high overall diversity of bacterial DNA in the atherosclerotic coronary and abdominal artery samples. Her study supports the theory that past infections increase the risk of developing atherosclerosis. It is not clear whether the bacterial findings are the cause or consequence of the illness. It may be that it is easier for bacterial DNA to stick to the damaged arterial wall. This study showed the role of inflammation and possibly infection in the role of atherosclerosis.

Chlamydia pneumoniae is implicated in the development of ME/CFS in some cases and is one of the sub groups for which further research is required.

The most common causes of death among people with ME/CFS are heart failure, cancer and suicide (Jason et al. 2006). According Jason et al. people with ME/CFS died 25 years earlier than rest of the population.

see http://acta.uta.fi/p...1-44-7249-7.pdf

The Journals of IiME are available here: http://www.investinme.org/InfoCentre%20-%20Journal%20of%20IiME.htm

For those delegates who are attending the conference we'd like add a reminder that coffee/tea will be available in the morning from 08.00 to 09.00, prior to the conference start. This will allow extra networking time. The agenda is available here.
Also, a quiet room has been made available for delegates who need to rest.

For those still thinking of coming to the conference then you are welcome.

The speakers at the conference promise to make this a unique event providing a wealth of biomedical research which builds on the research presented over the last couple of IiME conferences.

Dr John Chia produced research which has confirmed much of the research organised by the John Richardson Research Group in the past. An interesting blog of Dr Allen Blaivas (http://www.healthcen.../14552/fatigue/) describes Dr Chia's work as does Health on the Net http://www.hon.ch/News/HSN/608181.html.

Dr Chia is also on the clinical team of the CFS Research Foundation (http://www.cfsrf.com/index.html).

Dr Martin Lerner is the former Director of Infectious Diseases at Wayne State University School of Medicine and he has been studying and analysing ME for over twenty years and has published over 10 papers since 1993 on the role of subclinical myocarditis in a subset of ME patients. He will be speaking on successes with long term treatment with antivirals in patients with chronic EBV and CMV infections. Dr. Lerner uses antibody tests for early antigen to CMV and EBV that are not available in most commercial laboratories; he believes that they are better for differentiating active from latent infections. Dr Lerner's work has probably received less attention than deserved in the past yet there is now more interest in the link between viral myocarditis and ME with new studies showing HHV-6 and parvovirus B-19 to be the most common viruses found in biopsies of patients with viral myocarditis. Both viruses are also implicated in a subset of ME.

We could go on about the work of Dr Leonard Jason - one of the most prolific authors in the field of ME - but we'll leave it for the London conference.

Who is Attending the CONFERENCE

We have at least nine countries represented at the conference - from as far away as USA and Australia.

We hope to have a fair complement of people from the media. Our aim with the conference was again to attract healthcare staff to listen to some of the leading experts on ME and allow the objective data presented to change perceptions relating to ME. As we wrote prior to our first conference just one change in the knowledge of one healthcare practitioner could be significant for one family - something which will be worth the effort.

We are pleased to write that we have delegates attending representing PCTS, GP practices, ME Clinics, Universities, Educational services and occupational therapists. We also have the Medical Research Council and the Chief Medical officer represented. And, of course, we have individuals with ME and their carers or parents - without their support we could not have made this conference a reality.

And Who is not attending

The Department of Health will not be represented despite representations made to the government ministers to be our guests for the day. Otherwise this year we have an eclectic mix which we hope will provide a very interesting day for all.

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http://www.investinme.org/

[vivolenta]

http://www.investinm.....ence Home.htm

The 3rd CPD accredited IiME International ME/CFS Conference 2008

Possibilità di ordinare conferenze 2006 e 2007

Programma
http://www.investinm.....ce Agenda.htm

Conference Speakers ; http://www.investinm...erence_Speakers

Dr. Leonard Jason
Dr. John Chia
Dr. Martin Lerner
Professor Malcolm Hooper
Dr. Julia Newton
Dr. Irving Spurr
Dr. Jonathan Kerr
Dr. Judy Mikovits
Dr. Jean Monro

Allega File(s)

•  2007CongressionalAction.pdf   156,07K   77 Numero di downloads

Messaggio modificato da vivolenta, 30 maggio 2008 - 12:02:17

[vivolenta]

http://www.investinm...2I01-Conference

Invest in ME
The Journal of IiME
The Journal of IiME is a blend of research, science, facts, politics and real-life experiences relating to ME/CFS
Volume 2 Issue 1 Spring 2008
International ME/CFS Conference section May 23rd 2008
Volume 1 Issue 2 Autumn 2007
Volume 1 Issue 1 Spring 2007

LINK PER SCARICARE DOCUMENTAZIONE CONFERENZE ME/cfs
( in inglese)
2007
2008

Messaggio modificato da vivolenta, 30 maggio 2008 - 12:24:47

[vivolenta]

http://www.investinm.....20Issue 1.pdf

the journal of Iime
from Invest in ME
It is one year since we produced the first Journal of IiME as a means of providing a combination of biomedical research, information, news, views, stories and other articles relating to myalgic encephalomyelitis (ME/CFS) – basically, a broad spectrum of information on ME/CFS. Our aim was to distribute this for free four times a year. Due to the current size and financial limitations of IiME we can only provide a snapshot of the wealth of experience which already exists and continues to increase and we currently are only able to produce two copies a year. But we hope to change that in the future.
........................
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VOLUME 2 ISSUE 1 SPRING 2008
Inside This Issue
2 Editorial
3 From the Chairman
4 Biomarkers for CFS
8 Improved Renal Function in CFS/ME Patients with IVIG
9 Experiences of Care in Institutions with Severely-I People with ME
17 ME in Europe
20 ME/CFS as a Mitochondral Disease
24 The role of impaired capilary blod flow in ME
33 Esential Investigations for People with ME/CFS
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page 4


Possible application of visible and near-infrared spectral patterns in serum to provide emerging clue to biomarkers for chronic fatigue syndrome

By Akikazu Sakudo1* Yukiko Hakariya1, Takanori Kobayashi1,
Atsuko Sugimoto1 and Kazuyoshi Ikuta1
1Department of Virology, Center for Infectious Disease Control, Research Institute for Microbial Diseases, Osaka University, Yamadaoka, Suita, Osaka 565-0871, Japan


Abstract

Currently, chronic fatigue syndrome (CFS) is diagnosed based on clinical symptoms. Although various information on psychological, endocrinological and immunological abnormalities in CFS patients has been reported, there is no clear consensus, possibly due to the absence of an objective diagnostic method. Here, we propose that changes of molecules having hydrogen-containing functional groups are reflected in spectral patterns in sera of CFS patients. This is hypothesized from visible and near-infrared spectroscopy, which detects hydrogen-containing functional groups and shows the presence of common factor(s) in CFS patients’ sera, implying that the common factors bear hydrogen-containing functional groups. In this regard, the above findings would facilitate the search for biomarkers for CFS.
Key words: Vis-NIR; chronic fatigue syndrome; biomarker; chemometrics.
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Page 8
Improved Renal Function in CFS/ME Patients with IVIG By Dr Tae Park

Dr Tae Park M.D.
Dr.Park runs his own CFS clinic in Seoul, Korea. Dr. Park attended the Invest in ME International ME/CFS Conference in London in May 2007 and will be in attendance and briefly speaking at the IiME conference in may 2008
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Page9

Sidsel Elisabeth Kreyberg
Institutt for allmenn- og samfunnsmedisin, Universitetet in Oslo

ABSTRACT
Caring for seriously ill ME-patients: A small survey
Norwegian medical professionals generally lack the knowledge and experience needed to diagnose and provide advice on how to manage Myalgic Encephalopathy. The subject is also absent from the education of nurses and other health workers. Experience must, for now, be accepted as key to understanding and managing this largely unexplained disorder.
Seven nursing homes here outline which extra resources would be necessary to adequately treat and care for seriously ill ME-patients, according to their experience. Apart from suggesting specialised units, the answers comprise technical adjustments to provide maximum protection from sound and light, advanced ventilation systems, flexible kitchen facilities and individually adapted dietary regimens; medical advisors; and a carefully selected and limited number of carers to look after the ME-patient around-the-clock. Stability, predictability and consistency are necessary for the patients to cope, and a small team will enable the carers to cooperate, be alert to signs of adverse reactions, and take adequate measures to prevent deterioration. Routines for debriefing staff working with patients in a permanent crisis-like condition was called for; and extra time and resources to support relatives that assist in planning and caretaking, speak on behalf of the patient, and are crucial in providing know-how - all of which necessitates increased staff in general.
Key words
English: Myalgic encephalopathy, chronic fatigue syndrome, nursing, rehabilitation, experience
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Page 17
ME News from Around Europe from Sweden
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Page 18
ME NEWS FROM AROUND EUROPE
The Netherlands Calling!
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Page 19
ME NEWS FROM AROUND EUROPE
From Finland
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Page 20
ME/CFS as a Mitochondrial Disease
By Dr David Bell

………….So what is the problem? Why has ME/CFS not been diagnosed, studied and classified as other mitochondrial diseases? There are several reasons:
a) Mitochondrial disease is thought of by clinicians as a fatal disease of infancy, not one that occurs later in life.
Mitochondrial disease is usually thought of as a fixed, structural disease, and ME/CFS is a relapsing, remitting illness with some persons even becoming entirely well.
…………………….

Page 24
WHO GETS ME AND WHY
The role of impaired capillary blood flow in ME
By Les Simpson
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Page 33
Essential Investigations for people whit ME/CFS?
By Margareth Williams
Margaret Williams is a well respected authority on ME as well as being an ME patient advocate. Margaret Williams formerly held senior clinical posts in the NHS

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http://www.investinm...0Conference.pdf

International Me/cfs conference
Journal of Iime
conference Section
23 May 2008 London

Messaggio modificato da vivolenta, 31 maggio 2008 - 00:22:39