ME/CFS Primer/Education Newsletters Volume 8, Issue 3 • December 2015

Volume 8, Issue 3 • December 2015

December 22, 2015
 
IACFS/ME Newsletter
Volume 8, Issue 3 – December 2015
Editor Lily Chu, MD, MSHS, IACFS/ME Co-Vice President
 

Contents


IACFS/ME President’s Letter

Dear Members,

We are ramping up for our 2016 International Conference in the scenic ocean side city of Fort Lauderdale, Florida; October 27-30 (www.iacfsme.org). The call for abstracts is expected to open in February. We welcome original research studies, evidence-based clinical workshop proposals, and innovative proposals for symposia and panels that integrate research data and clinical expertise. You will receive notification when the call opens. Also, our sponsorship brochure is now available online with a broad range of support levels to suit anyone who would like to highlight their product or company at the conference.

New Focus on CFS/ME at the National Institutes of Health (NIH)
A most welcome development was announced in October by Dr. Francis Collins, the director of NIH: CFS/ME will now have a home institute, the National Institute for Neurological Disease and Stroke (NINDS) with a commitment to fund CFS/ME research. A home institute is an important development because it assigns responsibility to study and fund CFS/ME research to a particular agency within NIH. A research protocol will be launched at NINDS to explore the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression. It is not clear at this point if additional funding will be allocated.

Distinguished Scientists Address the PACE Trial
In a significant development regarding the controversial PACE trial, the largest and most influential behavioral treatment trial of CFS/ME to date, a recent open letter to the editor of the Lancet was published by a distinguished group of scientists (Davis, Edwards, Jason, Levin, Racaniello and Reingold, 2015; http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/). The letter re-examined the reported fatigue and physical function outcomes in the trial article and also pointed out potential conflicts of interest. The letter requested an independent expert-conducted re-analysis of PACE trial data.

The letter raised significant concerns about how “recovery” was defined, pointing out that recovery criteria for improved fatigue and physical functioning were so broad that many patients with impairments or no improvement were still classified as “recovered.” The use of the recovery term in my view is appropriate only for those who have experienced full or near full restoration of health. Yet the data from the PACE trial did not empirically confirm such restoration for those “recovered” individuals, nor did the study report on how many patients actually viewed themselves as recovered.

The terms “recovery” and “cure” should be carefully considered when applied to chronic illnesses. Certainly measurable improvement occurs in ME/CFS but the notion of full recovery is a much more ambitious construct for which we need proof not only from instruments, but from talking to the patients themselves.

Fatigue Journal: Institutional Subscriptions Needed!
Our association journal (Fatigue: Biomedicine, Health and Behavior; Publisher: Taylor and Francis) continues to receive submissions on CFS/ME, fatigue in illness, and task-related fatigue -- certainly good news. What we need now to ensure its long-range success is more institutional subscriptions. We ask for your help with this. If you could contact your local medical or academic library and ask that they subscribe to Fatigue -- that would be tremendously appreciated. If you are a local health professional with an affiliation to a medical or academic institution, they may honor your request and subscribe to the journal. Ultimately, a successful journal will generate a revenue stream for IACFS/ME and will help to ensure our long-term survival.

Tax-deductible Donations
As we’re nearing the end of the year, please consider donating to IACFS/ME, which is tax deductible for 2015. Also our lifetime membership is available for the very reasonable price of $2,000. This includes an ongoing subscription to our peer review online journal, discounted rates at our conferences, newsletter mailing directly to you, and public position statements regarding important ME/CFS issues, e.g., PACE trial and Institute of Medicine report. In the larger sense your donation helps to sustain our organization. This is especially important given that we are relatively small society without any major sources of financial support.

With best wishes for the holiday season!


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


Welcome Message from Lily Chu, Interim Newsletter Editor

Dear All,

For this Newsletter, with Ros Vallings recently retiring as Editor, I served as the interim Editor. Since our August Newsletter, much has happened in our field, most notably the announcement by US National Institutes of Health (NIH) director, Dr. Francis Collins that, based on two recent reports commissioned by the US government, his agency will be taking more action to advance ME/CFS research. A new intramural research program is in the works for ME/CFS and, I hope, more extramural funding and opportunities will also be available in the near future.

Over the years, Board members have heard anecdotally from researchers, clinicians, and others that obtaining government-sponsored funding for research related to ME/CFS can be quite challenging, in some cases more challenging than that for other fields or medical conditions. Reasons that have been brought up include poor funding overall for the field, grant reviewers’ lack of familiarity with the condition, and lack of funding programs/ initiatives specifically targeting ME/CFS.

Proposed and planned actions might not be successful if they do not address existing barriers. Thus, we are polling the ME/CFS community this and next month regarding their views and experiences with regard to applying for government-sponsored funding. We also want to hear any ideas you may have for governments to stimulate or support research.

The poll is short (12 items total), anonymous, and open to anyone. We encourage non-IACFS/ME members as well as the international community to participate. Even if you are not involved in conducting research, we want to hear from you although some survey items might not apply to you. We hope to share poll results both in a future edition of this Newsletter as well as with US federal agencies and officials. Your participation in the poll can inform and influence future science policy so click on the link below to go to the poll and feel free to share the link with as many people as you wish. Thanks for participating!

Click to participate: https://www.surveymonkey.com/r/ZLWB838

Secondly, I want to thank all the people who help put together this Newsletter. You can read their contributions below. In particular, Ros will continue to help us with gathering research abstracts so a shout-out to Ros for her dedication! I would also encourage anyone interested to participate in the future: Is there an event or announcement you want us to make? Something you learned from taking care of patients you want to write about? An issue or question you want to inform our readership about or, conversely, you want their opinions on? Our next Newsletter will likely come out in April 2016. Please send any proposed/ written items to the Newsletter Editor at newslettereditor@iacfsme.org.

Third, in this season of giving and sharing, please consider joining IACFS/ME, if you are not already a member, or supporting our organization through conference sponsorships or donations. As a nonprofit 501(c)(3) organization, donations to IACFS/ME are tax-deductible. Our Board/ committee members are all volunteers and give their time, energy, knowledge, resources, and experience to assure that research, clinical care, medical education, and public policy are guided and backed by accurate, up-to-date scientific findings. We do this through holding regular scientific conferences, publishing a peer-reviewed journal, and issuing position statements or educational materials about ME/CFS. Yet, there is so much more we could do if we had more financial support. For example, I can envision IACFS/ME leadership/ key members presenting information to federal agencies or at other professional organizations’ conferences to educate them directly about ME/CFS. More education may lead to better care for patients, less pressure on existing clinicians, and more understanding grant review panels. As the largest professional organization dedicated to ME/CFS and related co-morbidities, we bring credibility, expertise, and gravitas to the table. If the mountains won’t come to us, we must go to the mountains. However, we are constrained by lack of funding. If you yourself cannot donate but know of a corporation, foundation, or individual who might be able to, please refer them to IACFS/ME or contact me at lilyxchu@gmail.com and we will contact them.

Finally, I want to wish everyone Happy Holidays and a Peaceful, Prosperous, and Productive 2016! Although there continues to be much work to be done in this field, 2015 was a great year and I am optimistic that 2016 will bring even more positive changes.

Sincerely,

Lily Chu, MD, MSHS
IACFS/ME Co-Vice President

P.S. Here’s the view from Northern California in November. Yes, I feel lucky. (Give yourself a gold star if you can name what San Francisco-based character and movie I am referencing. Answer at the end of the Newsletter!)

                 

Board Activities:

Other than activities detailed in other sections of this Newsletter, the Board is currently engaged in planning for our next scientific conference to be held Oct. 27-30, 2016 at the Westin Fort Lauderdale Beach Resort in Fort Lauderdale, Florida, USA. In the next few months, look out for e-mails or announcements about the conference agenda, how to register for the conference, and how to submit an abstract or proposal for a workshop.

In putting together our conference, we would like to hear from our readership. Send your suggestions to the Newsletter Editor at newslettereditor@iacfsme.org
.

  1. What topics would you like to hear or learn about?

  2. Are there specific people you would like to learn from or meet? Who would you nominate
    as our keynote or plenary lecture speaker? (Note that speakers do not need to be directly involved in the ME/CFS field but is anyone that could make a valuable contribution to our field. For example, last year, our keynote speaker was Dr. Noel Rose, an eminent immunologist.)

  3. Are there any features of past meetings you would like to see repeated or not? (e.g. lunch meeting discussion about medical education)

  4. Who would you nominate for our clinician, researcher, young/ new clinician/ researcher, and special service awards? And why? For a list of past winners, see here.


In the Clinic:

This is a section I am starting that will focus on clinical issues ranging from medical matters (e.g. how to diagnose ME/CFS and related conditions, manage troubling symptoms when no evidence-based guidelines exist) to the nuts-and-bolts of running a clinical practice (e.g. assuring efficient workflow, hiring the right mix of staff). To kick off this section, David Bell, MD, an expert in pediatric ME/CFS, wrote about the inappropriate diagnosis of Munchausen’s Syndrome by Proxy and factitious disorder in children while I and Board Member Jon Kaiser, MD, wrote about the recent implementation of ICD-10-CM in the US. ICD-10-CM coding impacts not just insurance coverage of testing/ treatment, disability judgements, and provider reimbursement, but also allocation of clinical resources and research funding. IACFS/ME hopes to give input on ICD-10-CM so please let us know your thoughts after reading our articles.

Clinicians, please feel free to contribute in the future by sending in articles (your own or others, properly credited), ideas for topics, case reports, questions, or comments to
newslettereditor@iacfsme.org.

  1. Dr. David Bell: Munchausen’s Syndrome by Proxy, Factitious Disorders in Children and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [Attachment #1]

  2. Dr. Lily Chu: Chronic Fatigue Syndrome” no longer exists as a discrete entity in ICD-10-CM: potential impact in United States and abroad? [Attachment #2]

  3. Dr. Jon Kaiser: Bringing ME/CFS/SEID Further into Mainstream Medicine [Attachment #3]


Research:

  1. As always, Dr. Ros Vallings compiled abstracts of interest over the last few months and they are neatly organized in the following attachment. Eye-catching papers include ones connecting ME/CFS to pandemic influenza infection but not influenza vaccination (P. Magnus), a small randomized controlled trial demonstrating the feasibility and effectiveness of activity pacing/ self-management (D. Kos), efforts to create an outcome measure for the post-exertional fatigue experienced by patients (A. Keech), and a potentially ground-breaking study showing that increased serum autoantibodies to specific adrenergic/ muscarinic receptors may help select for subjects who benefit from rituximab (a great collaboration between the Loebel German and Fluge/ Mella Norwegian groups). Many more surprises await so dig in!

    Research Abstracts from October 2015 – December 2015: [Attachment #4]

  2. Research funding obstacles survey: Please read the Welcome Message for more details and click here to participate: https://www.surveymonkey.com/r/ZLWB838

  3. PACE Trial concerns and calls for retraction/investigation:  From Mary Dimmock:

    “Medical journalist David Tuller, frequent contributor to the New York Times, has published a series of articles outlining the serious concerns with the conduct, analyses, and results of the U.K.'s £5 million PACE trial of chronic fatigue syndrome. Based on the strength of this analysis, six researchers, four from outside the field, have written a letter to The Lancet calling for an independent re-analysis of the data. Other researchers and the patient community have also called for an independent review of PACE and for the removal of CBT and GET from clinical guidelines.” To read more, open the following: [Attachment #5]

  4. Virtual Journal Club: also known as the VJC. If there is interest, I’m hoping to start a column in future editions of the Newsletter where we can select 1-3 articles every Newsletter and discuss the results, strengths, limitations, and contributions of a paper to the field. If you would like to nominate a paper(s) for this column – it should have been published within the last 3 months -- and/or write a blurb about it for our readership, please contact me at lilyxchu@gmail.com. This is a great way to keep up with the literature and also to practice critical thinking skills. At one of the universities where I trained, one of the larger all-city journal clubs had been meeting 1 – 2 times a month for 50 years and showed no signs of stopping.


Correspondence and Perspectives:

Dr. Pawel Zalewski of the Polish CFS Association and Nicolaus Copernicus University wrote about the state of FM in Poland while Pelle Wall, a premedical student, reflects on his experiences working patients at Dr. Lucinda Bateman’s clinic. Dr. Zaher Nahle, Solve CFS Initiative’s Vice President for Research and Scientific Programs, wonders about the connection between Charles Darwin and ME/CFS. Finally, Dr. Torstein Egeland of the University of Oslo and his colleagues explain the impact of the US’s reports on ME/CFS in Norway.

  1. Dr. Pawel Zalewski: [Attachment #6]

  2. Mr. Pelle Wall: [Attachment #7]

  3. Dr. Zaher Nahle: [Attachment #8]

  4. Dr. Torstein Egeland et al: http://tidsskriftet.no/article/3404849/en_GB


News:

  1. IACFSME President Fred Friedberg, PhD, has joined the Board of the Solve ME/CFS Initiative. Friedberg becomes the 13th member of the Solve ME/CFS Initiative’s Board; all Board members have a personal connection to the disease. Friedberg attended the Solve ME/CFS Initiative’s Fall Board meeting, held Oct. 2-4 at the Bolger Center in Potomac, Md.

  2. Internationally-recognized ME/CFS epidemiologist and community psychologist Dr. Leonard Jason was recently recognized by the American Psychological Association for “Distinguished Professional Contributions to Applied Research.” Dr. Jason was given the award for his lifetime of work in not only ME/CFS but also for work related to tobacco use prevention and the role of Oxford Houses in recovery from substance abuse. Read more here: [Attachment #9]


Obituary:

We are sad to announce the recent passing of A. Martin Lerner, MD, PC, MACP, on October 5, 2015 from lung cancer. He was 86. Dr. Lerner was a pioneer in researching the role of herpes viruses in ME/CFS and in treating ME/CFS with antivirals over the last 3 decades. His work inspired others and improved the health of many patients. What is further remarkable is that his work with ME/CFS was but one part of his many professional accomplishments. Up until the time of his death, Dr. Lerner remained active, seeing patients and, throughout 2014, helping to co-author the Institute of Medicine report developing evidence-based clinical diagnostic criteria. We will miss this talented man and his positive attitude.

To read more about Dr. Lerner’s life and history, see here: [Attachment #10]

I had respected and known of Dr. Lerner’s work for several years and finally had the pleasure of meeting him when we worked together on the Institute of Medicine report. I learned a lot from Dr. Lerner during that year; beyond being a fantastic clinician and researcher, he was a gentleman and despite the more than 4 decades separating us, treated me as an equal. I will miss him. (From Lily Chu)

To read memories and appreciation of Dr. Lerner by others, see: [Attachment #11]

 


Answer to trivia question: “Dirty Harry” Callahan from the 1971 movie, “Dirty Harry,” about a police officer chasing down a serial killer in San Francisco. The famous line is: “‘You've got to ask yourself one question. Do I feel lucky? Well, do ya, punk?  Callahan was played by Clint Eastwood, who was also mayor of a small town in Northern California, Carmel, for a short time.
 
 

Disclaimer: IACFS/ME's mission is to stimulate and promote exchange, discussion, and dissemination of information around any and all aspects of ME/CFS, FM, and associated medical conditions. The Newsletter helps support that mission and we encourage submissions to the newsletter not only from our current membership but any interested party. IACFS/ME is not responsible for statements made by any contributor. Statements or opinions expressed in the Newsletter reflect the views of the author(s) and are not the official stance of IACFS/ME or the IACFS/ME Board unless otherwise stated. Mention and/or discussion of a test, treatment, procedure, product, person, website, or service in this Newsletter is not equivalent to an endorsement by this organization.

The medical information in this Newsletter is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Also recognize that information can change and that this Newsletter may not have been updated to incorporate the most current information. IACFS/ME expressly disclaims responsibility, and shall have no liability, for any damages, loss, injury, or liability whatsoever suffered as a result of your reliance on the information contained in this site

This Newsletter is an Official Publication of the International Association for CFS/ME (IACFS/ME), and is provided to association members and friends. Any comments, concerns or interest in publishing articles should be directed to newslettereditor@iacfsme.org or IACFS/ME, 9650 Rockville Pike, Bethesda, MD 20814.

All rights reserved. This publication is protected by United States copyright and other intellectual property laws and may not be reproduced, rewritten, distributed, re-disseminated, transmitted, displayed, published or broadcast, directly or indirectly, in any medium without the prior written permission of the IACFS/ME.

Disclaimer: IACFS/ME's mission is to stimulate and promote exchange, discussion, and dissemination of information around any and all aspects of ME/CFS, FM, and associated medical conditions. The Newsletter helps support that mission and we encourage submissions to the newsletter not only from our current membership but any interested party. IACFS/ME is not responsible for statements made by any contributor. Statements or opinions expressed in the Newsletter reflect the views of the author(s) and are not the official stance of IACFS/ME or the IACFS/ME Board unless otherwise stated. Mention and/or discussion of a test, treatment, procedure, product, person, website, or service in this Newsletter is not equivalent to an endorsement by this organization.

The medical information in this Newsletter is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Also recognize that information can change and that this Newsletter may not have been updated to incorporate the most current information. IACFS/ME expressly disclaims responsibility, and shall have no liability, for any damages, loss, injury, or liability whatsoever suffered as a result of your reliance on the information contained in this site.

This Newsletter is an Official Publication of the International Association for CFS/ME (IACFS/ME), and is provided to association members and friends. Any comments, concerns or interest in publishing articles should be directed to newslettereditor@iacfsme.org or IACFS/ME, 9650 Rockville Pike, Bethesda, MD 20814.

All rights reserved. This publication is protected by United States copyright and other intellectual property laws and may not be reproduced, rewritten, distributed, re-disseminated, transmitted, displayed, published or broadcast, directly or indirectly, in any medium without the prior written permission of the IACFS/ME.