IACFS/ME President’s Letter
Dear Members and Colleagues,
We’ve had a tumultuous few months, given the changing political landscape, the papers coming out on the PACE trial, and the uncertainties regarding future federal funding of ME/CFS research.
Federal Research Funding under Threat
The commitment to science and research of the current US leadership is now in question. Important ME/CFS research projects, both proposed and in progress, receive the bulk of their funding from federal sources, primarily the National Institutes of Health (NIH) and the Centers for Disease Control (CDC). The scientific findings that have advanced the field in the areas of immunology, genomics, neuroscience, and epidemiology are largely the result of federally supported research grants.
According to recent news reports, one specific program that has been proposed for de-funding is the CDC's CFS/ME research program. Another area of potential concern is the new NIH/CDC collaborating research centers initiative for ME/CFS. We can only hope that this program, which is now accepting applications, will go forward to review and funding. Advocates and organizations are currently contacting their members of Congress to oppose such cuts and support continued and increased funding for ME/CFS research. The US congress alone will decide the level of funding for both the NIH and CDC. We must protect the ability of our federal research agencies to fund science and generate new discoveries, particularly for ME/CFS.
Recent Commentaries on the PACE Trial
The PACE Trial continues to be of great concern to patients and clinicians due to the harmful effect of GET (Graded Exercise Therapy) on many patients with ME/CFS and the impossible expectation that GET and CBT (Cognitive Behavioral Therapy) will cure patients with ME/CFS. The PACE Trial is sometimes used as a guide for insurance benefits and patients may be denied disability benefits if they are designated as "non-compliant" when they are unable to participate in GET.
Our Association journal, Fatigue: Biomedicine, Health and Behavior, has recently published three commentaries on the controversial PACE behavioral intervention trial in ME/CFS (http://www.tandfonline.com/toc/rftg20/5/1?nav=tocList) including a critical look at the trial (Wilshire et al; 2017), a response to this commentary from the PACE trial authors (Sharpe et al. 2017), and a rejoinder from Wilshire and colleagues. These papers are all open access. Also a thoughtful opinion piece on the PACE trial in the New York Times by Julie Rehmeyer and David Tuller (March 17th; https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?_r=0), and my letter to the editor (March 27th; https://www.nytimes.com/2017/03/27/opinion/understanding-and-treating-chronic-fatigue.html) about this article suggest that the behavioral intervention issue is getting into the mainstream media.
We need this type of high visibility media coverage to effectively challenge the misleading “recovery” claims of behavioral intervention in ME/CFS. Alternatively we can promote efforts (through our conferences and IACFS/ME practitioners’ primer) to educate physicians and the public about the serious medical issue this illness represents.
Next IACFS/ME Conference
Our next international conference will be scheduled for fall, 2018 or spring, 2019 depending on our funding situation. Chicago is one possible location. We are open to other easily accessible locations if they are linked to funding. These meetings are crucial to bringing together the far flung research and clinical communities in our small field. The conference provides a unique opportunity to share important new research findings and address clinical concerns as well as to learn about clinical care of the illness through our specialized workshops. If you have ideas regarding conference funding or other conference issues, please contact me at: email@example.com We need your support in these challenging times!
With best regards,
Fred Friedberg, PhD
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME)
Issues with ICD 11
The International Classification of Diseases (ICD) is the international "standard diagnostic tool for epidemiology, health management and clinical purposes". Its full official name is International Statistical Classification of Diseases and Related Health Problems. These diagnostic codes have been produced by the World Health Organization. This is the 11th revision of these codes.
The ICD is important because it provides a common language for reporting and monitoring diseases. This allows the world to compare and share data in a consistent and standard way – between hospitals, regions and countries and over periods of time. It facilitates the collection and storage of data for analysis and evidence-based decision-making.
Users include physicians, nurses, other providers, researchers, health information managers and coders, health information technology workers, policy-makers, insurers and patient organizations. Source: Word Health Organization http://www.who.int/classifications/icd/revision/icd11faq/en/
It is vital that they are done correctly.
IACFS Board - submitted comments to WHO regarding the ICD 11 Handbook. Thank you to Mary Dimmock and Suzy Chapman for their proposal that was submitted to the WHO. Thank you Lilly Chu for composing the Board's comments.
IACFS Board's ICD 11 Comments
As the Board of the largest international organization of professionals dedicated to the care and research of people affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we would like to submit the following comments regarding ICD-11 classification of these conditions:
We recommend the following:
The continued classification of these three terms in the neurological chapter, as was done in ICD-10, until such time that research provides the evidence for a more appropriate classification.
The retention of the term "postviral fatigue syndrome" (PVFS) as a concept title along with the elevation of the terms "chronic fatigue syndrome" (CFS) and "myalgic encephalomyelitis" (ME) to concept titles at the same level, with each of the three terms given a unique code.
Modify the ICD-10 term "benign myalgic encephalomyelitis" to "myalgic encephalomyelitis" as the disease is not benign.
Add back the reciprocal exclusions between these terms and the word “fatigue” (as was done in ICD-10) and also between these terms and bodily distress disorder.
We oppose the classification and/or dual parenting of these terms in either the symptoms chapter or the mental health chapter in the ICD 11 Handbook.
Thank you for your attention,
Board of the International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis www.iacfsme.org
Corresponding Rationale for Comments (with references in brackets)
Rationale  and :
ME, CFS, and PVFS may differ from each other in terms of their symptoms, features, potential etiologies, prognoses, and treatment. Consequently, the three entities should be treated separately as they have been in past editions of the ICD codes. We support the decision to have a separate code for each of the conditions.
When the first outbreaks of ME occurred, during the 1930s and 1950s, when polio outbreaks were common, ME was labeled "benign" because, comparatively, it did not frequently cause paralysis or death. However, since that time, much evidence has accumulated that the condition is far from mild. A systematic review of prognosis revealed that only a mean 5% of patients ever recovered fully (Cairns) and a 25-yr. follow-up study (Brown) showed than many subject continued to be severely affected. At least 25% of patients are bed- or housebound (Institute of Medicine, Key Facts) and their function/ quality of life is frequently worse than that of people affected by stroke, breast cancer, multiple sclerosis, and rheumatoid arthritis (Falk). There is also some suggestion that patients may die earlier of suicide, heart disease, or cancer (McManimen, Jason).
Rationale  and :
Although fatigue is a common and severe symptom of ME, PVFS, CFS, all the current case definitions for these conditions include many more symptoms than fatigue. (Institute of Medicine) In 2015, the United State Institute of Medicine completed a review of over 9,000 research articles and concluded that ME and CFS were not the same as fatigue, not a mental health condition, and not a "figment of the patient's imagination." (Institute of Medicine, Report Brief) There are thousands of articles demonstrating physiological abnormalities in these conditions; some are summarized in these materials from our 2014 and 2016 conference. (Komaroff, Vallings) Subjects feel unwell because of these abnormalities, not because they are oversensitive to or exaggerating normal bodily sensations.
The classification of these conditions as psychiatric or psychological conditions is also detrimental in that they contribute to decreasing investment into medical interventions which actually might be more effective in helping patients. IACFS/ME has always recognized that co-morbid psychological and psychiatric conditions should be treated and that certain counseling treatments may help patients cope better with their illness. (Goudsmit) However, claims that psychological or psychiatric treatment substantially help subjects with their symptoms associated with these disorders are unwarranted and the latest, multi-million dollar trial claiming this came with many flaws. (Coyne, Sense About Science) The preponderance of evidence suggests that these conditions do not originate from psychiatric or psychological causes but from physiological ones.
IACFS/ME President's Letter Published in New York Times
On March 19, the New York Times, a major newspaper in the USA, published an editorial by science journalists Julie Rehmeyer and David Tuller concerning the continued impact of the PACE trial on ME/CFS treatment despite multiple issues with its theory, design, and analysis. As attendees of our 2016 conference may remember, Dr. Tuller won one of our Special Service awards. In response, IACFS/ME President Fred Friedberg, a psychologist experienced with behavioral medicine, wrote a short letter reinforcing the editorial, noting that while the interventions in PACE may help improve quality of life, as they would in other chronic illnesses, 1) they are not cures or disease-modifying treatment and 2) claiming they are may detract from efforts to come up with more effective treatments.
In the Clinic
Post-infectious fatigue syndrome (PFIS): follow-up after Norwegian outbreak with Giardia lamblia twelve years later. This clinical patient long-term study entitled: "From From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory" by Eva Stormorken, Leonard A. Jason and Marit Kirkevold was published in BMC Family Practice. http://rdcu.be/qqQT
In Bergen Norway the drinking water was contaminated with the parasite Giardia lamblia (beaver fever). Despite treatment with antibiotics, sometimes multiple courses, 2,500 people became ill with chronic debilitating illness.
The term PFIS refers to severe and prolonged fatigue following infectious triggers such as viruses, bacteria and parasites. The term post-viral fatigue syndrome and myalgic encephalomyelitis have also been used because the infectious agent has not always been able to be identified. In the situation in Norway, because the cause was identified as a parasite, the term PFIS was used.
This is a very helpful paper clinically. I found the graph of the five phases of illness trajectory to be extremely helpful to understand patients clinically as it described the functionality or state the person was in over time with their illness. We need more long term studies done on patients with ME/CFS over time.
The use of Bell's Disability Scale also showed the severity of the disability that remains with these people to the present day.
Events and Announcements
Invest in ME 2017 International Conference - London - June 2:
Invest in ME, a charity based in the United Kingdom, will be holdings its 12th Annual International Conference in London, England June 2. The Conference will be preceded by a 2-day, by-invitation-only research conference May 31 and June 1. Healthcare professionals, scientists, patients, their supporters and the general public may all attend the June 2 meeting. For details on the meeting and directions on how to register, please see this link.
Department of Defense Congressionally Directed Medical Research Program (CDMRP) Announcements:
The US Department of Defense (DOD) manages the CDMRP, which provides a potentially bountiful and alternative source of funds for medical research. Contrary to its location within the DOD, CMRP funds investigations of numerous medical conditions which do not have a direct connection to the military; for example, millions of dollars have been allocated to breast cancer, autism, and multiple sclerosis research. In March, CDMRP release two announcements which may be of interest to ME/CFS researchers: one on tick-borne illnesses and another on Gulf War Illness. Check the links for details. (And thank you to Dr. Nancy Klimas for alerting us to these opportunities!)
$25,000 Robert S. Birch Prize for Original Research or Commentary Relating Gender-specific Medicine to Investigations at the Molecular and Cellular Level:
As many of us know, it is not clear why ME/CFS affects women at 2-3 times that of men. Simultaneously, most studies of ME/CFS have overwhelmingly female subjects, which reflect the condition's epidemiology, but which might make any findings non- or less applicable to men. If you are working on a project examining sex differences and ME/CFS, consider applying for this prize. The winner will receive $25,000 while other contestants may have their work published in the journal Gender and Genome. The prize is sponsored by the journal and the Foundation for Gender-Specific Medicine. Read the announcement for more details; deadline is 9/30/2017.
Western Massachusetts Medical Group Seeks Clinician:
Northampton Integrative Medicine (www.nimed.org) is seeking a compassionate, motivated, full-time provider (MD, DO, NP or PA) to join our well-established practice specializing in integrative/functional medicine. We treat patients with ME/CFS, Lyme, hormone imbalances, chronic illness, infections, nutritional deficiencies, allergies and environmental illness. We have an insurance-based model of operation. Providers receive competitive, performance-based compensation and enjoy a 4.5 day work-week with no weekends, overnight call or hospital work. We are in a vibrant, Western MA 5-college community. Nature, culture, arts and educational opportunities abound. Contact: firstname.lastname@example.org (413-584-7787 x104).
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NIH Budget cuts have been announced
Solve ME/CFS Initiative has announced that they are supporting actions in local districts, online, and by phone. The goal of the actions will be to gain support from members of congress for multiple key ME/CFS initiatives brewing later this year and to raise awareness of our disease with federal leaders. Solve ME/CFS Initiative
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