ME/CFS Primer/Education Newsletters Volume 8, Issue 1 • April 2015

Volume 8, Issue 1 • April 2015

May 8, 2015
 

IACFS/ME Newsletter

April 2015

Editor
Rosamund Vallings, MNZM, MB BS
New Zealand ME/CFS Association

 


CONTENTS

IACFS/ME President's Letter

Welcome Message from Ros Vallings, newsletter editor

History
Board Activities
Primer Committee
Research
Journal
Webinars etc.
Grants and Awards

Conferences, Meetings, etc.

Book Review


IACFS/ME President’s Letter

Dear Members,

For us northerners, the long cold winter seems to be finally coming to an end!

Some good warm weather news: Our next biennial international research and clinical conference is now scheduled for October 27-30, 2016 at the Westin Ft. Lauderdale Beach Resort in lovely Ft. Lauderdale, Florida, USA.

http://www.starwoodhotels.com/westin/property/overview/index.html?propertyID=3328&language=en_US

And we have an important addition to the international conference: Nancy Klimas, our esteemed colleague and past president of IACFS/ME, will be organizing a one day pre-conference on October 26 at Nova Southeastern University also in Ft. Lauderdale. At Nova, Nancy is a Professor of Medicine, Professor and Chair of the Department of Clinical Immunology and Scientific Director of the Institute for Neuro-Immune Medicine. As you may know, Nancy is the originator of the multi-system dysregulation model of CFS/ME and the PI of several large scale NIH grants on CFS/ME, Gulf War Illness, and animal models of altered HPA and immune signaling.

As of January, 2015, our new management company (FASEB) is providing essential support in our day to day operations as well as leading our planning effort for the upcoming international conference. Our website is also being migrated to FASEB management. I apologize in advance for any interim glitches with journal access, donations, and any other site-related issues.

With great pleasure, I’d like to introduce two new board members: Attorney Steven Krafchick who also holds a MPH, is our new treasurer; and physician Jon Kaiser who is heading up our pharma relations committee. Steve is a highly regarded CFS/ME attorney and advocate. Jon is an experienced clinician who has shifted his professional activities into (funded) research on an innovative treatment for CFS/ME and Gulf War Illness.

Our Association journal, Fatigue: Biomedicine, Health and Behavior, continues onward with its quarterly publication schedule. Especially notable in the New Year, we are receiving an increasing number of high quality submissions of empirical studies and review papers. One reason for our success: we are the only life sciences fatigue journal. Also the journal is increasingly being recognized throughout the international scientific community.

Finally, now that two major US government sponsored reports have been published on CFS/ME (NIH Pathways to Prevention and Institute of Medicine) that both strongly endorse the validity and seriousness of the illness, we hope that major new research funding programs are established at the national level.

With best regards,

Fred
Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org


Message from Ros Vallings, newsletter editor

Dear All,
I am writing this at Easter here in New Zealand, and we are enjoying autumn days of sunshine coupled with lighter mornings (to suit the dairy farmers), having put our clocks back yesterday. Putting the clocks back from summertime always seems to herald a few problems for those with ME/CFS, as so many seem to have such fragile body clocks. It is often hard to fit in with new work/school hours, but for those not so committed the change can be made gradually by say 10 minutes daily to lessen the health concerns.
 
HISTORY
 
I will be going to China for a holiday in July, and am hoping to meet up with some of the ME/CFS researchers in Wuhan. While exploring their work, much of the emphasis is of course, not unexpectedly, on Traditional Chinese Medicine. And I found an interesting overview of ancient Chinese medical manuscripts and Chronic Fatigue Syndrome, going back to the Sui Dynasty (581–618 AD). Five universal patterns of CFS have been described. (Attachment 1)
 
 
BOARD ACTIVITIES
 
The board meets approximately every 6 weeks via Skype. We have settled on Florida as a venue for the next conference in 2016. Once details become settled you will receive notifications. Maybe you can start already thinking about this as a holiday option to add on. Florida offers many beautiful locations and places of interest such as the Kennedy Space Centre (NASA) and the Orlando Disney World.

We were sorry to say farewell to Dennis Mangan who has worked tirelessly and particularly hard at finalizing our constitution, making sure it is worded correctly and that we are adhering to the rules. Thank you Dennis. We now welcome 2 new Board members: Steven Krafchick and Jon Kaiser. Both have a variety of skills we shall utilize. Steven has much needed legal expertise and John is well versed in pharmaceuticals and links with pharmaceutical industry. The term of office for both Staci Stevens and myself expires now, but Staci has offered to stay on board to help with conference planning. I will stay on until the next newsletter, helping the would-be volunteer keep this going. We shall also need to elect a new secretary.

One of the big events of the past few months has been the Institute of Medicine report into ME/CFS, which many of you will have already read. It is a lengthy document. Board member Lily Chu was a member of the IOM committee producing this, and we appreciate her huge effort and commitment. A 20-page precis of the 300 page report can be viewed at:

http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf 

The full report and video presentation can be viewed at:

http://www.iom.edu/Reports/2015/ME-CFS.aspx 

Copies of the report can be purchased. The board together with many other people responded to the report, and our letter is attached. (Attachment 2)

A thorough review has also been penned by previous board member Ken Friedman and sent to me as correspondence for inclusion in this newsletter. We would welcome comments. Ken has obviously spent a lot of time working on this review. (Attachment 3)

You will find on the internet many reviews and much critique, but overall it is good that this illness is being discussed and reported on in media around the world. Recognition can only increase.
  
PRIMER COMMITTEE
 
The Primer for Physicians committee will continue to review the primer with a view to updates. This is particularly important as new research findings come to light. We are always looking at methods for wider distribution of the Primer, as it has proved a valuable resource with much positive comment from physicians and other health practitioners. Your ideas and input will be welcome. The Primer can be downloaded via our website, or hard copy ordered. I have found generally that physicians do like a hard copy for day-to-day reference – and it is an attractive booklet. It is useful for all health professionals and I have received very positive comments from doctors’ nurses, physiotherapists etc. Patients can be encouraged to provide copies for all those involved in their health care.

I am a member of the committee (chaired by Ken Friedman) convened to produce a Paediatric Primer and we have met regularly via Skype. This committee includes top paediatricians and CFS/ME researchers from around the globe. It is a big undertaking and needs to be carefully researched as for the adult Primer. There is very little readily available of this nature for those medical people caring for children with ME/CFS.
 
RESEARCH
 
Research continues in many prestigious institutions around the world.

Abstracts of 42 publications from 15 countries are attached (Attachment 4). Over the last 6 years we have had papers from 45 countries. This time there is a paper from Russia, and although its main focus is on MS, there is relevance to ME/CFS. The article on ciguatera poisoning from France may not seem relevant, but reports some years ago from Australia describe an illness fitting the ME/CFS criteria, with some becoming chronically afflicted. I recall Prof John Pearn from Queensland presenting a paper on ciguatera at an earlier ME/CFS conference (Attachment 5). An important paper has just been published by Mady Hornig on the “Cytokine network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome”, with unique findings.

A preconference colloquium (BRMEC5 Biomedical Research Collaborative Meeting) is planned prior to the Invest in ME conference in London in May 2015. This will cover 2 days this time, and is by invitation only. Top researchers and clinicians will be attending. I feel very privileged to have been invited again. As previously, some of the invited researchers will be people not previously involved in ME/CFS – in the hope of whetting the appetites! This has been a very successful venture previously.

ME Research UK produces a weekly round-up of research papers, keeping us right up to the minute. See: http://www.meresearch.org.uk/news/round-up-27-march-2014/ 
  
JOURNAL
 
Fred Friedberg has continued to edit the journal “Fatigue: Biomedicine, Health & Behavior” which is published 4 times a year. The latest edition has recently been published. See: http://www.tandfonline.com/toc/rftg20/current#.VIdf1ZVxnIU  for a list of contents, and for a subscription, the journal can be downloaded on line.
 
WEBINARS etc.
 
A series of webinars are now being produced by different ME/CFS organizations, and you can view these links and you can subscribe to the e-mailing lists for future events.

2 webinars are planned with presentations by Drs Lucinda Bateman and Lily Chu. (Attachment 6)

https://www.youtube.com/watch?v=3smCvgi3DlI&feature=youtu.be - on this site you have the opportunity to view previous webinars via YouTube.

And here is the link to the 84 page February edition of the ME Global Chronicle: http://let-me.be/news.php?item.10.1 
 
GRANTS AND AWARDS
Dr. Dikoma Shungu & team have been received NIH awards of nearly $2 Million to close the scientific gap in Chronic Fatigue Syndrome Research.

And a $500,000 grant has been awarded to the Solve ME/CFS Initiative to further epigenetic research through the Dr. Ralph & Marian Falk Medical Research Trust.


Board member Lily Chu has posted the following:

Please consider making a donation to IACFS/ME so that we may continue to educate professionals, promote ME/CFS research, and advocate for science-backed healthcare/ government policies. Donations can be made via check or credit card online; if you are not sure which option to choose, pick "General Fund":

http://iacfsme.org/Home/IACFSMEDonation/tabid/345/Default.aspx

And finally an article in the NY Times just recently sent to me by member Dr Alan Gurwitt which he feels brings up very important issues.

http://www.nytimes.com/2015/04/05/upshot/when-moneyball-meets-medicine.html?ref=todayspaper&abt=0002&abg=1

If you have any items of interest for future newsletters or correspondence, notice of meetings etc., please send them to me at: Vallings@xtra.co.nz .
 
And if any of you are interested in being involved with sub-committees or helping the board in conference preparation, please contact us.
 
Very best wishes,
 
Ros
Ros Vallings

 

 

CONFERENCES, MEETINGS etc.

INVEST IN ME
29th May 2015 - IIMEC10
Welcome to London for the IIMEC10 International ME Conference for 2015.
Invest in ME is a UK charity facilitating and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME. http://www.investinme.eu/ for details and enrollment

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Tuesday, 5 May 2015 - 1:00pm
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: “Not Just Tired All The Time!”
Barnard’s Inn Hall, Gresham College, London
ME/CFS is a complex, long-term, chronic illness affecting an estimated 250,000 people in the UK. This lecture will provide a general account of the history, epidemiology, suggested cause, disease mechanisms and current treatment approaches for ME/CFS. A follow-up lecture, 'Standing up for fatigue' will provide an overview of research developments into fatigue, a common and disabling symptom of ME/CFS.

You do not need to register for this free public event. It will be run on a "first come, first served" basis, so please feel free to arrive a little early to ensure that you can get a seat. Doors will be opened half an hour before the start of the event.
Speaker: Dr Alastair Miller
Consultant Physician in the Tropical & Infectious Disease Unit at the Royal Liverpool University Hospital
http://www.gresham.ac.uk/lectures-and-events/
myalgic-encephalomyelitis-chronic-fatigue-syndrome-not-just-tired-all-the-time
 

Registration for researchers is now open for the UK ME/CFS Research Collaborative (CMRC) Annual Science Conference on Tuesday 13 October and Wednesday 14 October 2015. Associate members of the CMRC, including people with ME, will be able to register from 1 May 2015. To facilitate travel for speakers and visitors, the venue is the 3-star Novotel at Newcastle Airport. Further details of the outline programme and the costs can be found at:

http://www.meresearch.org.uk/news/cmrc-researchers-registration/
 
 

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8-12TH May 2015
IMMUNOLOGY 2015™
AAI Annual Meeting
Ernest N. Morial Convention Center, New Orleans, Louisiana
900 Convention Center Blvd., New Orleans, LA
 

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26-30 May 2015
ACSM's 62nd Annual Meeting, 6th World Congress on Exercise is Medicine® and World Congress on the Basic Science of Exercise Fatigue

San Diego, California
www.acsmannualmeeting.org

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Myalgic Encephalomyelitis & Chronic Fatigue Syndrome Conference
10th August 2015 – 13th August 2015 – Cairns, Queensland, Australia

http://www.zingconferences.com/conferences/myalgic-encephalomyelitis-chronic-fatigue-syndrome-conference/

 

BOOK REVIEW

Giving Yourself to Life
A journal of pain, hope and renewal
By Deborah Shepard
Calico Publishing Ltd (NZ) 2015
www.calicopublishing.co.nz



This poignant and deeply moving book describes the author’s journey through chronic and often intense pain over a year. It is written from the heart and is a positive affirmation of how one can still have a life, even when devastated by pain and suffering. There is humour, there is sadness, there is despair, there is love, but overall this account takes one right into the heart of the author. Although the focus is on pain, her writing is pertinent to the harshness of any chronic and unremitting condition. She experiences all the nuances in the voices of others, which even when well meant, often have a hidden agenda. This can include anything from disbelief to offers of endless potential “cures”. But there is a willingness on her part to try almost anything.

We learn about her close family network, the importance of family and friendships, and how friendships with others who have suffered similarly can be particularly meaningful. We learn about the importance of how, as doctors, we phrase our words to avoid misinterpretation or negativity, while at the same time not offering false hope.

A good deal of the book also focuses on the aftermath of the ruinous Christchurch earthquake, when she often equates the losses of those affected with the loss of her own health. This is a searching journey. By the end of the book she has found routes to managing and living well with her pain, positively comparing her own fortunes in this regard to those less fortunate. Her love of nature is a joy, with beautiful descriptions of the animal and plant life in her surroundings. Her long journey towards the discovery of self-hypnosis leaves us on a very positive note about her future, and should provide much comfort to others.

This is a book I would recommend to anyone in pain, who feels lost and alone. And it is a remarkable insight for those who care for them.

Print book available from:
http://calicopublishing.co.nz/book/giving-yourself-to-life-2/

Ebook available from:
http://www.amazon.com/Giving-Yourself-Life-journal-renewal-ebook/dp/B00TEFLJ98/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1428291740&sr=1-1&keywords=giving+yourself+to+life

and: https://store.kobobooks.com/en-US/ebook/giving-yourself-to-life

Rosamund Vallings MNZM, MB BS

 

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