WINTER 2017

SMCI’s Comprehensive Research Program

Improves the ME/CFS Ecosystem and Spans
Every Phase of the Discovery Process
Capacity Target Repurposing Preclinical Clinical Therapeutic
Building Discovery Opportunities Research Research Discovery

THE DISCOVERY PROCESS

Discovery requires not just “bench science,” but also

a healthy ecosystem in which research can thrive.
I N SI D E
2 Letter from Our President

8 Letter from Zaher Nahle, PhD

At the Solve ME/CFS Initiative (SMCI), the comprehensive nature of our
research program is underscored by two core components: 9 What, Exactly, Is a Biomarker
Anyway?
1) We initiate and support high-quality research across every phase of the
11 Consensus Needed on ME/CFS
discovery process (as shown above and described on page 4). Research Case Definitions
2) We work to improve the overall ME/CFS ecosystem through the following 12 SMCI Presents at Precision
key functions: Medicine Worldwide
Conference
DEBUNKING fallacies and misinformation about ME/CFS 13 SMCI Continues Its Work to
Drive Federal Action for
CREATING opportunities for young investigators ME/CFS

FACILITATING patients’ participation in research 15 Determining the Disease

Burden of ME/CFS
ADVOCATING for effective policies and federal actions
17 Patient Voices
PUBLICIZING current scientific and medical developments
18 SMCI Answers Reader
Questions
PROMOTING cross-pollination of ideas through think tanks
19 Thank You for Standing with Us

20 Carol Head Named 2017

Health Hero by O, The Oprah
» to page 4 Magazine
3
 NEWS AND UPDATES

Why Is Funding ME/CFS Research So

Difficult? Dear Friends,

It’s a fresh new year…and once again we look forward to building on 2016’s
successes as we continue the too-long battle for treatments and a cure for
patients with ME/CFS.

As we look to 2017, some of our 2016 work will certainly move forward. We know
that the five Ramsay Award Program research projects (discussed in this issue’s
cover story) will proceed, and we know that our SMCI-Directed Research Studies
(detailed on pages 6-7) will yield meaningful results. We will continue our
research webinar series, just as we will continue to partner with other research
Carol Head, President and CEO and advocacy organizations.

SOLVE ME/CFS INITIATIVE And at the same time, as we look forward, some matters seem quite uncertain.
PROFESSIONAL STAFF With the federal administration transition, will National Institutes of Health
(NIH) funds be expanded or cut? Will the next director of the Department of
Carol Head
Health and Human Services (HHS) continue to support the Chronic Fatigue
President and CEO
Syndrome Advisory Committee (CFSAC)? Will the Trans-NIH Working Group
continue to build on its progress? Will the Centers for Disease Control and
Zaher Nahle, PhD, MPA
Prevention (CDC) continue its multi-site clinical assessment?
Chief Scientific Officer and
Vice President for Research
Certainly, come what may, we will continue our relentless, thoughtful, assertive
work in both research and advocacy.
Karen Petersen
Director of Development
On a different note, I’m often asked why we, as a private medical research
non-profit, repeatedly ask patients and their loved ones for financial donations to
Emily Taylor
support our work. When other disease organizations like ours (e.g., Michael J. Fox
Advocacy and
Engagement Manager Foundation for Parkinson’s Research, Susan G. Komen, and the American Heart
Association) obtain funds from a wide variety of sources, why don’t we?
Jennifer Arganbright
Communications and Certainly, this is top of mind for us! It is painful to ask for funding from those
Media Relations Manager who suffer with this disease and often have extremely limited resources. So let me
provide our perspective on this core funding problem our disease faces.
Linda Leigh
Accounting, HR, and
Administration Manager First, by far the primary source of funds for medical research in general is the
federal government. Our efforts to obtain those funds for ME/CFS are years long
Mamie-Louise Anderson and relentless. It is a long haul, and we have described this at length.
Administrative and
Development Coordinator Second, there are unique attributes of our disease that make fundraising, both
from individuals and private foundations (e.g. Gates, Ford, and Kaiser), quite
Erin Davie
difficult:
Biobank and Patient
Registry Coordinator • There’s a stigma. Most people simply still do not believe this disease is “real.”
We can report that our organization has received very few gifts from individ-
Diana Sagini uals who have not seen this disease up close and personal. For people who do
Development Coordinator

2 The Solve ME/CFS Chronicle

 NEWS AND UPDATES
SOLVE ME/CFS INITIATIVE
BOARD OF DIRECTORS

Each board member is a patient or has a

not live with this disease, if the donation choice is between this “weird disease,” friend or family member affected by this
which they may not even believe in, or, say, Lupus or MS or cancer—which disease.
people know are awful and real—where would you give your dollars?
Vicki Boies, PsyD
• There is little sense of urgency. This disease has been around for a long time.
Chair
And it’s not generally fatal (we know the disease can be fatal, but most don’t). Chicago, IL
As we sometimes say, “ME/CFS is a life sentence, not a death sentence.” Just
think of the difference with AIDS in the 1990s, when people were suddenly dying John Nicols
quickly and in significant numbers.
Vice Chair
Cupertino, CA
• The disease is complicated and poorly understood. Where to start to do
research? It can feel overwhelming for potential funders. Beth Garfield, Esq.
• There is a tendency to give again where individuals and foundations have Treasurer
Los Angeles, CA
given before. So it is a tough bootstrap effort to solicit initial gifts.

Aaron Paas
The other significant source of funds for other diseases is the pharmaceutical
Secretary
industry. Drug companies, as private, for-profit organizations, are responsible New York, NY
primarily to their shareholders. They generally invest in new drugs for diseases
when there is a clear “target” for the drug. Michael Atherton
Arlington, VA
With so very little understood about the underlying causes and attributes of ME/
CFS, we are years away from a time when pharmaceutical companies are likely to
step up. Of course, that time will come. The good news/bad news is that there are Brett Balzer
a lot of ME/CFS patients. So, at some point, this disease will become an attractive Chicago, IL
market for pharmaceutical companies—it just hasn’t yet.

Diane Bean, Esq.

Lastly, for individuals, the longstanding tradition of run/walks and other participa- Bethesda, MD
tory events is difficult when folks don’t really believe in the disease. There doesn’t
yet exist a critical mass of people who will put themselves out for this strange,
misunderstood disease. The stigma is real. When someone says, “I’m going out to Mary Dimmock
walk for breast cancer on Saturday!” there is much affirmation. Imagine someone Waterford, CT
saying, “I’m going out to walk for ME/CFS on Saturday!” to blank stares and
perhaps even scoffing.
Fred Friedberg, PhD
Stony Brook, NY
So where does that leave us regarding fundraising to fight for this disease? It’s
adding insult to injury that ME/CFS patients carry the additional burden of fund-
ing research into this disease. We know that someday this will change. But until Carol Head
it does, please know that we must continue to ask…and we are deeply grateful for Los Angeles, CA
every gift. We know that every gift is given with passion and fervent hope. Our
responsibility to use each dollar effectively lies heavy on my heart. Sue Perpich
Minneapolis, MN
I end this letter with deep gratitude to the patients whom we serve. We stand when
you cannot. We invest in research when you cannot. We advocate when you cannot.
Rick Sprout
We fight when you cannot. Onward into 2017!
Washington, DC

Christine Williams, M.Ed.

Chevy Chase, MD
Carol

www.SolveCFS.org 3
 COVER STORY

» from page 1

SMCI’s Comprehensive Research Program Improves

the ME/CFS Ecosystem and Spans Every Phase of the
Discovery Process (cont.)

While our methods of improving the overall ME/CFS re- 4. Preclinical research: Denotes research in the basic
search ecosystem are straightforward, allow us to elabo- sciences using biological specimens (e.g., patient
rate on the overall discovery process. Dr. Nahle clarifies samples, cultured cells, tissues) or model systems
that this non-linear process can be broken down into six (e.g., animal models) to understand the mecha-
phases: nisms and signaling pathways that will have appli-
1. Capacity building: Includes the development of cations in clinical trials; this step is fundamental for
human capital, infrastructure, tools, and resources targeted therapy design
to drive ME/CFS research forward 5. Clinical research: Involves experimentation with
2. Target discovery: Encompasses the identification human participants done in a clinical or laboratory
of reliable biomarkers, indicators, or other biolog- setting; this includes clinical trials, natural history
ical culprits that can be therapeutically targeted or studies, clinical effectiveness, and outcome research
manipulated as well as the development and improvement of
clinical criteria updates
3. Repurposing opportunities: The retooling of exist-
ing FDA-approved drugs for other uses; when pos- 6. Therapeutic discovery: This is the goal and includes
sible, it can bypass several time-consuming steps the identification and development of treatments
toward drug approval and, eventually, a cure

2016/2017 1 2 3 4
SMCI RESEARCH Capacity
Building
Target
Discovery
Repurposing
Opportunities
Preclinical
Research
Clinical
Research
Therapeutic
Discovery
DASHBOARD
Ramsay Award Program projects awarded through rigorous peer review
TEAM 1 Brain inflammation - Diagnostics - Neuroimaging 1 4

TEAM 2 B-Cell function - Metabolomics - Rituximab 1 2 3 4

TEAM 3 Bioenergetics - Natural Killer cells - Mitochondria 1 2 3

TEAM 4 Autoimmunity - genetic screening 1 4

TEAM 5 Viral infection - HHV6 - Immunity - Energetics 1 2 3

SMCI-Directed Research Studies addressing severe knowledge gaps

Group 1 Metabolomics - Bioenergetics (Cornell/Metab/Levine) 1 2
Resources in support of studies
BIOBANK

Group 2 Immune-senescence - cell cycle energetics (Wash U) 1 2 3 • NIH

• University of Vermont
Group 3 Dug screening platforms - Therapeutics (MSKCC) 1 2 3 4 • University of Toronto
• Washington University in St. Louis
1
Collaborative project through our Cathleen J. Gleeson PhD Fund
CJG Diagnostics – Metabolic Imaging (U of Washington) 1 3 4

4 The Solve ME/CFS Chronicle

 COVER STORY

Dr. Nahle notes that “By creating environments in SMCI’S RESEARCH WEBINAR SERIES
which real and durable research and advocacy collabo- The medical webinars we produce, featuring influ-
rations develop and flourish, we reframe the discussion encers in science, medicine, and policy, are the go-to
so that all voices in ME/CFS can be heard and respected. source of trusted, up-to-date medical information,
Through unity and cross-pollination, we are affecting current research, and policy development. On-de-
change and deconstructing stubborn medical challenges mand video from SMCI’s 2016 Webinar Series, mod-
in ME/CFS.” erated by Dr. Zaher Nahle, is offered free of charge on
our website at SolveCFS.org/2016-webinar-series.
We act as agents for change and unity: we meet with
government officials and science leaders to advocate for SMCI’S RESEARCH ADVISORY COUNCIL
policies and federal action; we author dozens of opinion The SMCI Research Advisory Council (RAC) consists
and technical pieces addressing current ME/CFS affairs of world-class leaders and provides great depth to our
across the science, research, and policy landscapes; we work. The RAC includes foremost experts on ME/CFS
debunk fallacies and misinformation through our No like Anthony Komaroff, MD (Harvard); Susan Levine,
Spin Zone; we create opportunity for young investiga- MD (CFSAC, The Levine Clinic); Jose Montoya, MD
tors through our MeetME Travel Awards; and we bring (Stanford); Peter Rowe, MD (Johns Hopkins); Cindy
scientific and current information to our community Bateman, MD (Bateman Horne Center); and Andreas
through webinars and opinion pieces. In addition, we Kogelnik, PhD, MD (OMI) as well as a number of sci-
participate in conferences and convene some of the top entific leaders like Sheila Stewart, PhD (Washington
minds in ME/CFS clinical care and research to collabo- University) and Michel Silvestri (Sweden).
rate on the key issues facing ME/CFS.
SMCI’S RAMSAY AWARD PROGRAM
To be specific, SMCI manages the following programs to This program supports and promotes original, bold,
facilitate research work for all who join us in the fight quality research work through seed grants. Grant
for a cure, while creating and collaborating on projects recipients are selected via a peer-review competition
that emphasize the role of patients as partners—not with three primary objectives: to INVEST in original
subjects: ideas that could clarify the onset, progression, root
causes, and natural history of ME/CFS; to CREATE en-
SMCI’S NATIONAL PATIENT REGISTRY vironments to attract, support, and retain talent in the
Our new, state-of-the-art national registry for ME/ ME/CFS community and help awardees generate rel-
CFS will enable clinical trials, further understanding of evant data to compete for long-term federal funding;
the natural history of this disease, and includes built- and to FACILITATE collaboration and cross-pollina-
in options for data sharing and collaboration among tion among dedicated researchers through the sharing
patients, researchers, and other disease organizations. of resources and access to additional programming
and the organization’s network.
SMCI’S BIOBANK
Our biobank is a repository of physical samples from In 2016, SMCI’s Ramsay Award Program supported stud-
patients to support the work of qualified researchers ies in gut microbiome, autoimmunity, bioenergetics,
and accelerate the discovery process. This important pathogenic interaction, inflammation, brain imaging,
aspect of the services we provide also links patients and metabolomics research. Peer-reviewed selection
with researchers and facilitates the use of human criteria included significance, quality, feasibility, inno-
samples for ME/CFS research. Studies using samples vation, novelty, and research environment among other
from our biobank have been used in phases 1, 2, and 3 factors.
of the discovery process.

» to page 6

www.SolveCFS.org 5
 COVER STORY

» from page 5

SMCI’s Comprehensive Research Program Improves

the ME/CFS Ecosystem and Spans Every Phase of the
Discovery Process (cont.)

SMCI’s Ramsay Award Program grant winners selected For more information on the studies summarized
in 2016 are as follows: above, please visit SolveCFS.org/2016-ramsay-award-
program-results/ or check out the December issue of
Research Team 1’s study, entitled “Advanced Research 1st in our SMCI publication archive located at
Non-Invasive Analysis in ME/CFS Diagnosis and SolveCFS.org/archive.
Treatment Decisions,” will use a magnetic resonance
spectroscopic thermometry (MRSt) technique to SMCI-Directed Research Projects
assess absolute temperature across the entire brain, Dr. Zaher Nahle has led the creative scientific work to
allowing researchers to investigate the pathophysiol- design and invest aggressively in much-needed projects
ogy of ME/CFS (in other words, the functional changes to further understanding of the pathophysiology of ME/
that accompany the disease). CFS. With a growing number of targeted investments in
severe knowledge gaps (such as pathway and biomarker
Research Team 2’s study, entitled “Metabolic Analy- discovery, immuno-senescence and cell-cycle energet-
sis of B-Cell Maturation in Myalgic Encephalomyelitis/ ics, drug screening and functional genomics, diagnos-
Chronic Fatigue Syndrome,” theorizes that “a single tics and advanced imaging, and metabolomics and big
agent is not responsible and that chronic changes to data research), we are creating value across every phase
the normal functioning of immune and other body of the discovery process. These are the elements of a
cells caused by stressors such as infections more growing portfolio of investment in ME/CFS at some of
likely underlie this disease.” the most prestigious medical
centers and research estab-
Research Team 3’s study, entitled lishments in the country, in-
“The Bioenergetic Health Index of cluding Washington Universi-
NK Cells as a Diagnostic Tool for ty in St. Louis, the University
Chronic Fatigue Syndrome,” takes a of Washington, Memorial
look at natural killer (NK) lympho- Sloan Kettering Cancer Cen-
cytes (a type of white blood cell), a ter, Cornell University, and
critical first defense against viruses Metabolon.
and cancers. NK cell dysfunction is a
pathological hallmark in myalgic encephalomyelitis/ Pathway and Biomarker Discovery. Original research
chronic fatigue syndrome (ME/CFS). in the areas of bioenergetics, metabolomics, and lip-
idomics using high-throughput technology. Testing
Research Team 4’s study, entitled “Autoimmune completed. Partners in this SMCI-Directed Research
Signature in CFS/ME,” combines in-depth genetic Study include Dr. Sue Levine of The Levine Clinic in
screening methodologies with the study of autoim- New York, Dr. Maureen Hanson of Cornell University,
mune factors regulating a specific type of surface and metabolomics leader Metabolon.
receptors important in cellular signaling and function. • Analysis of same ME/CFS patients characterized for
their gut microbiome imbalance using metabolom-
Research Team 5’s study, entitled “HHV-6 Mediated ics and lipidomics methodologies; this is a powerful,
Mitochondrial Modulation and Its Association to integrative approach
ME/CFS,” examines the role of human herpesvirus 6
(HHV-6) in the development of ME/CFS.

6 The Solve ME/CFS Chronicle

 COVER STORY

• Analysis of well-characterized twins, one with ME/ A Collaborative Project through Our
CFS and the other without, to study possible genetic Cathleen J. Gleeson PhD Fund
and monogenetic differences in an ideal compara- This project, funded by our Cathleen J. Gleeson PhD
tive group fund, focuses on diagnostic testing using non-inva-
• Analysis of metabolomics profile in patients before sive technology to measure muscle metabolites in ME/
and after exercise to characterize the foundation CFS patients for diagnostic testing. This project is led by
of exertion intolerance in ME/CFS patients in well Kevin Conley, PhD, professor of radiology and co-direc-
controlled settings tor of the Translational Center
for Metabolic Imaging at the
Immuno-senescence and cell- University of Washington and
cycle analysis in the pathophysiology David Maughan, PhD, a pro-
of ME/CFS. Characterization of the fessor emeritus of molecular
disturbances in enzymes and cell-cycle physiology & biophysics at the
regulators that control cell function University of Vermont and visit-
using specialized senescence laborato- ing scholar in radiology at the
ries in collaboration with leaders in the University of Washington.
field. Partners in this targeted initia-
tive include Dr. Sheila Stewart of Washington Univer-
sity in St. Louis and Dr. Masashi Narita of the Narita SMCI’s MeetME Travel Awards
Group at Cambridge University. This program enables junior scientists and underrepre-
• Analysis of the molecular underpinnings of cellular sented groups to attend ME/CFS conferences and build
senescence (a fundamental biological process whose scientific networks by paying their travel expenses for
pathophysiology manifestations are reminiscent ME/CFS-focused meetings and conferences around the
of aging-related senescence and the arrest of cell world.
function), effects on muscle weakening, dysautono-
mia, and neurological dysfunction Per Dr. Nahle, “As you can see, we already have many
promising programs and studies under our research
Drug screening and functional genomics. Studies umbrella. And you have our steadfast commitment to
aiming to uncover potential drug screening targets in expand on our efforts in 2017, building on our activities
ME/CFS. Partners in this targeted initiative include of this past year. Previously, I’ve borrowed the words of
leading experts at Memorial Sloan Kettering Cancer President Lincoln in a time of political uncertainty: ‘The
Center, namely Drs. Ralf Garippa, Scott Lowe, and dogmas of the quiet past are inadequate to the stormy
Myles Fennell. present. The occasion is piled high with difficulty, and
• Uses ME/CFS immune cells and chemical libraries we must rise with the occasion.’ This has never been
of characterized compounds to identify targets for more applicable to the here and now in the field of ME/
rapid therapeutic application. CFS research. That is precisely why we, through our
research programming, are shifting the paradigm and
• Objectives include promoting immune cells’ ability
altering the status quo.” n
to kill intruders and bolstering ATP production and
bioenergetics health using the power of big data and
pharmaceutical-grade technologies.

www.SolveCFS.org 7
 RESEARCH

A Letter from Zaher Nahle, PhD, MPA

 Dear Friends,

At the beginning of every new year, with hope and

optimism we renew our commitment to solving this
complex disease.

This is indeed an extraordinary time for scientific

growth and collaboration at SMCI. Numerous programs
have been unveiled throughout the year, underscoring Zaher Nahle, Chief Scientific
durable partnerships with stakeholders and the greater Officer and Vice President for
Research
ME/CFS community.

The new Research Advisory Council we convened Our presence and participation at leading scientific
provides great depth to our work and consists of world- conferences, such as the Invest in ME Research Confer-
class leaders such as ME/CFS experts Anthony Komaroff, ence and Colloquium, Action for ME CFS/ME Research
MD (Harvard); Susan Levine, MD (CFSAC, The Levine Collaborative conference’s big data session, and IACFS/
Clinic); Jose Montoya, MD (Stanford); Peter Rowe, ME Biennial Conference, has been both fruitful and well
MD (Johns Hopkins); Cindy Bateman, MD (Bateman received.
Horne Center); and Andreas Kogelnik, PhD, MD (Open
Medicine Institute) as well as a number of scientific And, most importantly, we initiated partnerships with
leaders like Sheila Stewart, PhD (Washington Universi- leading medical research centers and industry part-
ty) and Michel Silvestri (Sweden). ners to conduct innovative and targeted investigations
through our SMCI-Directed Research Studies, which are
The Ramsay Award Program, which awards seed grants explored in detail on pages 6-7.
in the areas of basic, preclinical, clinical, and epidemi-
ological research, generated international submissions This is all to change the status quo, create value in the
with high-quality, innovative proposals. We expect to ME/CFS ecosystem, and bring a different perspective to
see results from these seed grants later this year. the field. We remain committed to in-depth, basic, and
translational research—especially in our areas of priori-
Our MeetME Travel Awards program enables young ty: bioenergetics, neuroendocrine biology, and immuni-
investigators to attend ME/CFS conferences and build ty/inflammation.
scientific networks.
While we are aware of the many challenges still fac-
Our new, state-of-the-art national registry for ME/CFS ing the ME/CFS community—from the severe gaps in
will facilitate information sharing among organizations, knowledge to the painful lack of funding—we look to
enable clinical trials, and further understanding of the the future, energized and determined to build on our
natural history of this disease. growth and momentum moving forward.

The medical webinars we produce, featuring influencers Best,

in science, medicine, and policy, are the go-to source
of trusted, up-to-date medical information, current
research, and policy development.
Zaher 

8 The Solve ME/CFS Chronicle

 RESEARCH

What, Exactly, Is a Biomarker Anyway?

And Why Don’t We Have One for ME/CFS?
What is a biomarker? For instance, the creation of the PSA test for prostate
When is the last time you took your temperature using cancer meant that men could be diagnosed much soon-
your thermometer? Temperature is the most common- er. And the Pap smear, designed to screen for cervical
ly used biomarker—one that we all know and trust. We cancer and based on research dating back to the 1920s,
all have a thermometer at home and have used it many has saved thousands of lives. Acute promyelocyte leuke-
times to confirm that our temperature is abnormally mia, once a death sentence, is
high, indicating that we have an infection somewhere practically eradicated thanks to
in our body. This self-administered biomarker mea- identification of its biomarker,
surement is used to determine whether our kids should fusion oncoproteins (proteins
stay home from school, we should call the doctor, or we that can turn cells into cancer
should stay home from work. This is a great biomarker, cells), and, later, successful
as it meets all the criteria we seek. corrective treatment.

In diabetes, the detection of

So, what are those criteria? What makes a chronically elevated sugar levels
good biomarker? makes diagnosis straightfor-
In the example above, the biomarker is elevated tem- ward. And the discovery of the biomarker responsible for
perature as measured by the home thermometer. The cystic fibrosis, the inherited gene for the CFTR protein,
process for testing this biomarker is wonderful for many revolutionized that disease. Biomarkers can be useful
reasons: for diagnosis and treatment even when the underlying
cause of the disease is not understood.
• It’s non-invasive; putting a tab under the tongue or in
the ear is not painful
So, a biomarker for ME/CFS that has all the qualities
• It has little risk of harm listed above—it’s non-invasive, inexpensive, reliable,
• It’s very inexpensive; most everyone has a thermom- accessible, well-accepted, and specific while also having
eter at home little risk of harm—would transform the diagnosis and
treatment of our disease. Just imagine going to your doc-
• It’s reliable; we trust the number we see
tor and doing a simple test then having her announce,
• It’s easily accessible; we don’t even have to drive “Yes, you have ME/CFS.” Certainly, that is the very op-
anywhere posite of the experience of most patients now!
• Everyone agrees that a fever indicates infection; it’s
well accepted in the medical community Do we have any biomarkers for ME/CFS now?
• It’s specific, meaning that it identifies an infection Well, yes and no. We don’t have any biomarkers that
and not something else (like a cataract) meet all the criteria above. But we do have a few that fall
short. They are all either too invasive, too expensive, too
potentially harmful, or not well accepted.
Why do biomarkers matter so much?
Biomarkers can be important to diagnose, verify, and Most existing biomarkers for ME/CFS fall, broadly
track the presence of disease; having a great biomarker speaking, into established categories such as neurolog-
can even transform an illness. ical (e.g., neuroanatomical, neuroendocrine, or neuro-
cognitive), metabolic (e.g., altered regulatory functions

» to page 10
www.SolveCFS.org 9
 RESEARCH

» from page 9

What, Exactly, Is a Biomarker Anyway? And Why Don’t

We Have One for ME/CFS? (cont.)
of key enzymes, suboptimal processing of nutrients), ogy research and athletic performance analysis, this

immunological (e.g., altered activities in cytokines, measurement also requires sophisticated equipment

B-cells, or natural killer cells), hemodynamic (e.g., re- and specialized expertise for data interpretation. In

duced total blood volume, reduced cerebellar perfusion, the ME/CFS community, it is well known that patients

or cell-free markers like specific microRNAs in blood), experience post-exertional malaise (PEM) after push-

or pathological (e.g., microbiome changes, viruses, and ing their energy boundaries.

pathogens).
Given their importance, what’s the fastest
Here are some of the difficult biomarkers we have for path to a meaningful biomarker for ME/CFS?
ME/CFS now: Are we even close?
• The spinal fluid of severe ME/CFS patients shows With steady and focused research, we may be close to
elevated levels of autoimmune markers and white identifying biomarkers in the next several years. Of
blood cells. But this test fails on most criteria. It is course, understanding the underlying cause of a disease
quite invasive, there is risk of harm, it’s expensive, greatly enhances the ease of obtaining a biomarker,
and it’s not generally accepted. The and that too is likely years away. At
key positive attribute is that it is reli- the same time, there are a number
able. of efforts underway with interesting

• MRIs for ME/CFS patients show results which may lead to biomarkers,

reduced gray and white matter in the including studies being done by our

brain. This biomarker is a bit better organization.

than a spinal tap, as it’s non-in-

The potential biomarkers below have
vasive, there is little risk of harm,
been identified with small sample sizes
and it’s reliable. However, it’s quite
and must be validated or rejected. Then, those validated
expensive, it’s not easily accessible, and it isn’t clear
must be tested with larger sample sizes for specificity,
that the medical community has accepted it.
meaning that we must ensure the tests measure for this
• ME/CFS patients’ natural killer (NK) cells show disease and this disease only.
reduced functionality. NK cells act as the first line of
• More refined cytokines, which may show distinctive
defense in the immune system and are a key com-
patterns in ME/CFS
ponent of one’s blood. This biomarker is one of the
• Reproducible results from small molecules as indica-
earliest uncovered in ME/CFS and has stood the test of
tors like MicroRNAs
time. However, determining the functionality of these
cells requires a sophisticated laboratory setup, and • Mutations, either structural or functional, in an en-
data interpretation is not straightforward, requiring zyme or receptor of metabolism
special expertise. In addition, other immune-related
conditions are also characterized by reduced NK cell In summary, we have a long way to go. Our SMCI-Di-
function, making this biomarker not unique to ME/ rected Research Studies and those studies conducted by
CFS. our recently announced Ramsay Award Program grant
• The majority of ME/CFS patients have markedly dif- recipients will, if successful, continue to move the field
ferent “anaerobic thresholds.” This measurement, toward a biomarker. So, we continue our research. It’s
taken during cardiopulmonary exercise testing (CPET), clear that someday there will be a biomarker for ME/
determines the complex capacity of the whole body CFS, just as there is for virtually every disease. We sim-
for energy production. Common in exercise physiol- ply need to get there faster. n

10 The Solve ME/CFS Chronicle

 RESEARCH

Consensus Needed on ME/CFS Research

Case Definitions
By SMCI Board Member Mary Dimmock

The Centers for Disease Control and Prevention (CDC) and

National Institutes of Health (NIH) will be conducting an ini-
tiative to establish ME/CFS common data elements (CDEs) to
standardize the collection of data across studies and thereby
facilitate the comparison of results.

For a field that has suffered from a Brurberg1 reported that there are 20
lack of standardization, this is an different case definitions and that
essential step to improving cross- prevalence estimates range from
study comparability. But Depart- 0.01% to 2.60% and even higher, Given the recognized lack of speci-
ment of Health and Human Services indicating the magnitude of the ficity of some of the commonly used
(HHS) staff members have also problem. Worse, these definitions definitions, the proposal to continue
stated that as long as researchers are sometimes modified in ways that to use any research case definition
use CDEs, it will not matter what further expand the set of conditions raises significant concerns. Will
research case definition they use. given the “ME/CFS” label. One ex- Fukuda or the 2005 Reeves crite-
ample is the 2011 PACE trial, which ria still be used to select ME/CFS
This is concerning, because re- stated it used the Fukuda definition cohorts even though we know they
quiring that standardized data be to characterize patients but only select patients who do not have ME/
collected on the presence or absence required Fukuda’s four symptoms to CFS? Will patients selected with
of a hallmark symptom, such as be present for one week instead of the NICE criteria, currently planned
post-exertional malaise (PEM), is the six months required by Fukuda. for a large UK study, all have ME/
not the same thing as requiring that CFS? NICE only requires fatigue,
patients have these hallmark symp- Many groups—including the NIH, characterized by PEM, yet defines
toms in order to be diagnosed with the Agency for Healthcare Research PEM’s worsening of symptoms
ME/CFS. The critical question to ask and Quality (AHRQ), the Institute following exertion as optional. If
is whether CDEs alone will compen- of Medicine (IOM), and a group of the IOM criteria is used, will those
sate for the continued divergence in 50 disease experts—as well as the primary psychological illnesses that
what core inclusion and exclusion Pathways to Prevention (P2P) report manifest as physical complaints be
criteria are required for the selection have identified the definitional in- excluded? Will any combination of
of ME/CFS research cohorts. consistency and lack of specificity as inclusion and exclusion criteria be
a priority issue. The research com- accepted as a valid way to identify
This lack of agreement on patient munity is increasingly using more ME/CFS cohorts?
selection criteria has plagued ME/ selective criteria, such as the Cana-
CFS for decades, confounding dian Consensus Criteria and the ME The use of disparate and non-spe-
research and resulting in inappro- International Consensus Criteria, to cific research case definitions is
priate clinical guidelines that have select research cohorts. responsible for the muddle we face
misled doctors and harmed patients. today. Continuing to use any case
definition to select ME/CFS patients
1
http://bmjopen.bmj.com/content/4/2/e003973.full
» to page 12
www.SolveCFS.org 11
 RESEARCH

SMCI Presents at Precision Medicine

Worldwide Conference
One of the key goals of the Solve ME/CFS Institutes of Health Director Dr. Francis Collins and his
statement, “Of the many mysterious human illnesses
Initiative is to entice new researchers
that science has yet to unravel, ME/CFS has proven to be
to study ME/CFS. one of the most challenging.”

To work toward this goal, SMCI presented an hour-long Chairing the panel was SMCI Chief Scientific Officer
session on ME/CFS at the Precision Medicine World- and Vice President for Research Dr. Zaher Nahle, while
wide Conference (PMWC) in late January. Presenting at speakers included SMCI Research Advisory Council
PMWC was an investment in the ecosystem of ME/CFS, member Dr. Andreas Kogelnik (Open Medicine Insti-
as we were able to educate the heavy hitters in medical tute), and SMCI President Carol Head. Carol, an ME/CFS
research in order to actively draw patient herself, was able to both
new scientists into the field.  address the patient experience and
describe the many research chal-
PMWC is the original and leading lenges of ME/CFS.
forum for personalized medicine.
With over 8,500 attendees, mostly For most attendees, we believe
from the biotech and academic re- this was their first exposure to this
search arenas, the conference was complex and fascinating disease.
one of the largest gatherings of
Zaher Nahle, Carol Head, and Andreas Kogelnik
recognized authorities and experts Scientists, by their nature, are often
across the healthcare and biotechnology sectors.  attracted to new and complex challenges; we hope that
by speaking to them directly about ME/CFS at this year’s
SMCI’s hour-long session explored why precision medi- PMWC we’ve gotten a good number of them to view our
cine is fundamental in solving ME/CFS and clarifying its disease in a new and intriguing light. n
etiology. The session’s title, “ME/CFS: The Mysterious
Illness Science Has Yet to Unravel,” is a nod to National

» from page 11

Consensus Needed on ME/CFS Research Case Definitions

will perpetuate this problem, par- the significant progress that would ria—will be used going forward.
ticularly as new researchers enter be possible if patients labeled with
the field. While essential, CDEs ME/CFS actually have ME/CFS. And, just as importantly, explicit
alone will not solve this problem, as consensus should be reached on
many of the studies will be accessed The NIH and CDC are to be ap- what research case definitions will
through published literature and plauded for convening a group of no longer be accepted for the se-
evidence reviews—not through researchers to reach consensus on lection of ME/CFS cohorts. Achiev-
a shared database. But even if all CDEs. This is an important step. But ing this consensus will accelerate
studies were suddenly in a single da- for the first step, the NIH and CDC research by helping to ensure that
tabase built on CDEs, the manmade should work with researchers to all researchers, including those just
diversity introduced by including reach consensus on which research entering the field, are studying the
dissimilar and/or unspecified condi- case definition—or at least what same disease. n
tions in ME/CFS cohorts will impede core inclusion and exclusion crite-

12 The Solve ME/CFS Chronicle

 ADVOCACY

SMCI Continues Its Work to Drive Federal

Action for ME/CFS
Looking Back at Advocacy in 2016
From the #MillionsMissing protest actions to the highest • #MILLIONSMISSING On May 25 and September 27, #ME-
ranking ME/CFS policy meeting in history to the largest Action organized the two largest international actions
congressional action to date on myalgic encephalomyeli- for ME/CFS ever recorded. With 39 separate protests
tis, 2016 was a landmark year for ME/CFS advocacy. Below held around the world, thousands of patient activists
are some highlights of the 2016 advocacy work done by made their voices heard. SMCI supported and spoke at
the Solve ME/CFS Initiative (SMCI): protest actions on both days.

• THE BUDGET BATTLE In February 2016, the President’s • MEETINGS AT THE TOP OF HHS Led by #MEAction, SMCI
budget announcement included a bit of a shock: no President Carol Head participated in two meetings with
funding for the Centers for Disease Control and Pre- Dr. Karen DeSalvo, the assistant secretary for health at
vention’s ME/CFS multi-site clinical assessment. SMCI the Department of Health and Human Services (HHS).
President Carol Head and other advocates from across This may have been the highest level government offi-
the country traveled to Washington DC and successfully cial to meet with ME/CFS patients and advocates.
lobbied to have the $5.4 million budget reinstated. • THE MIGHTY FIFTY-FIVE U.S. Representatives Zoe Lof-
• SENATE COMMITTEE APPROPRIATIONS REPORT Thanks to gren and Anna Eshoo of California led the charge by
successful meetings on Capitol Hill, advocates secured authoring a letter to NIH Director Dr. Francis Collins,
strong language from the Senate Appropriations Com- urging him to continue strengthening the NIH’s efforts
mittee to both the National Institutes of Health (NIH) in ME/CFS biomedical research. An unprecedented
and Centers for Disease Control and Prevention (CDC), 55 members of congress cosigned the ME/CFS letter,
directing these agencies to invest in ME/CFS research, making it the largest congressional action on ME/CFS in
include stakeholders as active participants, and work recent memory.
collaboratively to improve patient care. • MEETING AT THE TOP OF NIH Carol Head and Dr. Zaher
Nahle met with NIH Director Francis Collins in New
York for a private conversation regarding ME/CFS.

Looking Ahead to Advocacy in 2017

SMCI is hitting the ground running. Guided by a new Poli-
cy Advocacy Statement, SMCI is committing to leading the
charge on a number of major actions, including an ME/
CFS Advocacy Week, an educational briefing on Capitol
Hill, and a strategic push for the fiscal year 2018 appro-
priations cycle (10/1/17 – 9/30/18).

The first major advocacy event of 2017 was the annual

meeting of the federal Chronic Fatigue Syndrome Adviso-
ry Committee (CFSAC) on January 12 and 13. SMCI holds
SMCI Board Member Diane Bean and her daughter Lauren Bean,
a community liaison representative seat on the commit-
who suffers from ME/CFS, visit Congresswoman Zoe Lofgren
of California along with SMCI President Carol Head and Board tee, and SMCI President Carol Head presented a strong
Member Mary Dimmock.
» to page 14
www.SolveCFS.org 13
 ADVOCACY

» from page 13

SMCI Continues Its Work to Drive Federal Action

for ME/CFS (cont.)

vision of federal agency action on ME/CFS that included mobilization. Key patient advocates are currently collab-
bolstering research investments, disability protections, orating on a unified strategy with nationwide coalitions
ME/CFS patient equity, and medical education policies. and key organizational partners. Following is a rundown
of SMCI’s federal advocacy plans for the first half of
SMCI plans to support and boost this call for agency 2017:
action with strong congressional support and advocacy

2017
JANUARY FEBRUARY MARCH APRIL MAY JUNE

ME/CFS Advocacy
Advocate for ME/
Secure congres- Week to corre- Lobby for the
CFSAC in-person Draft and send CFS to be included
sional support for spond with May creation of a
meeting and bipartisan appropri- as part of Senate
Senate and House 12 International congressional
presentation ations letters confirmation
actions Awareness Day for ME/CFS caucus
hearings
ME/CFS

New Administration – New Opportunities?

Presidential transitions are turbulent affairs. community. Dr. Collins has been one of the most effec-
tive directors to date in moving the internal processes of
Thanks to the 2015 Presidential Transitions Improve- the NIH toward progress for ME/CFS.
ments Act, the outgoing administration begins prepar-
ing for the incoming administration as early as May with However, the new administration also presents new
a White House Transition Coordinating Council and an challenges. The ME/CFS advocacy community has spent
Agency Transition Directors Council. eight years cultivating agency relationships to make
progress, and the potential to lose those small gains is
In terms of ME/CFS advocacy efforts, the new adminis- very real. Furthermore, the nominee for secretary of the
tration presents potential opportunities. Nominees have Department of Health and Human Services (HHS), Sen-
been announced, and newly cultivated ME/CFS champi- ator Tom Price, has spurned constituents with ME/CFS
ons in the Senate stand ready to make our community who have approached him in the past. SMCI will work
needs part of the conversation. Potential new agency actively with the incoming administration to educate
leadership, untainted by misconceptions or stigma and inspire action regarding ME/CFS.
about the disease, can lead to new opportunities to start
fresh with an administration that has defined itself Ultimately, it is not the administration that will dic-
with a “getting business done” approach. At press time, tate the future of ME/CFS, but advocacy. Working with
current National Institutes of Health (NIH) director, and strong coalitions, patient advocates, and congressio-
strong supporter of ME/CFS research, Dr. Francis Collins nal champions, SMCI stands ready to spearhead major
appeared to be a strong contender to remain in his lead- actions for research investment. And that commitment
ership role, which would spell good news for the ME/CFS will not waver. n

14 The Solve ME/CFS Chronicle

 ADVOCACY

Determining the Disease Burden

of ME/CFS
By SMCI Board Member Mary Dimmock

Those touched by ME/CFS have long known what

the 2015 Institute of Medicine (IOM) report and
other recent publications confirmed: ME/CFS caus-
es more debilitation than diseases such as conges-
tive heart failure, multiple sclerosis, and end-stage
renal disease. And yet, in spite of this, the IOM
Mary Dimmock, SMCI
reported “remarkably little research funding” for Board Member and
ME/CFS Advocate
ME/CFS.
nalist Carolyn Johnson detailed how diseases with higher
The impact a disease has on patients is called its “disease disease burden could sometimes have dramatically lower
burden.” The World Health Organization has pioneered a levels of research funding, noting that “in 2010, HIV re-
single measure of disease burden, disability-adjusted life search received nearly $3.1 billion in funding, while a deadly
years (DALY), which combines the number of years of pre- lung disease that has more than six times the health toll in
mature death with the magnitude and number of years of the United States got only $118 million.”
disability caused by a given disease.
The reasons for these differences are complex and, as was
Though it may sound cold, this quantifiable measure of pain the case with HIV/AIDS, can also include the opportunity to
and suffering allows federal policy makers to compare very permanently eradicate a disease. But scientists told John-
different diseases—for instance, the burden of a disease son the NIH’s analysis also suggested less funding may be
that primarily causes premature death with that of a dis- provided to diseases “where we blame the victim” or there
ease that causes decades of debilitation. DALY also provides is less public support.
a means to evaluate whether public health responses and
policies are decreasing a disease’s burden over time. For ME/CFS wasn’t included in the 2015 NIH analysis because
instance, likely as a result of new treatments the US burden the US DALY had never been calculated for the disease. To
of AIDS fell by 61% between 1990 and 2010. address this gap, Dr. Leonard Jason, Arthur Mirin, and I
recently published a paper estimating DALY for ME/CFS and
The National Institutes of Health (NIH) uses disease bur- its relation to research funding.
den, in addition to scientific opportunity, quality of sci-
ence, and researcher interest, in deciding where to focus The impact on DALY due to disability was based on reports
its research. In 2015, the NIH published an analysis of how 1
of decreased quality of life. Given that ME/CFS is underdi-
its funding levels compared to DALY figures for 68 disease agnosed and not effectively tracked in electronic medical
areas. A Washington Post article on this analysis by jour-
2
records, it’s difficult to directly estimate the impact on
DALY from deaths resulting from ME/CFS and its compli-
1
https://nexus.od.nih.gov/all/2015/06/19/burden-of-disease-and-nih-funding-pri- cations. However, several small studies provided reports
orities/
of increased numbers of premature deaths due to cancer,
2
https://www.washingtonpost.com/news/wonk/wp/2015/07/17/why-the-diseases-
that-cause-the-most-harm-dont-always-get-the-most-research-money/?utm_ter- heart disease, and suicide.
m=.7649893a968b

» to page 16
www.SolveCFS.org 15
 ADVOCACY

» from page 15

Determining the Disease Burden of ME/CFS (cont.)

$10,000,000,000

HIV/AIDS

$1,000,000,000

TB AUTISM
2013 US Funding

F
MS
$100,000,000

$10,000,000

A
FF==Fair
Fair ME/CFS Funding
ME/CFS Funding
AA==Actual ME/CFS
Actual ME/CFS Funding
Funding
$1,000,000
1,000 100,000 10,000,000
2013 US DALYs y = 107326x0.5541

The resultant DALY was then compared to the NIH’s anal- these limitations, this analysis demonstrates a remarkable
ysis of funding versus disease burden to estimate the level level of underfunding, significant gaps in research, and
of NIH funding that would be commensurate with that of inadequate clinical care practices.
these other diseases (Figure 1).
Dr. Nancy Klimas once noted her HIV/AIDS patients were
This analysis suggests that NIH funding for ME/CFS would “hale and hearty thanks to three decades of intense and
have to increase roughly twenty-five-fold to $188 million excellent research and billions of dollars invested,” while
per year (from $7 million per year) to be commensurate her ME/CFS patients “are terribly ill and unable to work or
with disease burden. participate in the care of their families.”

Our paper describes significant limitations that could As was done with HIV/AIDS, the Department of Health
impact the accuracy of estimates of DALY and commen- and Human Services has the real opportunity to decrease
surate NIH funding. These include lack of quality research the terrible burden of ME/CFS by providing commensurate
on prevalence, levels of disability, and causes of prema- funding and the leadership necessary to address gaps in
ture death. Other limitations include missed and mistaken research, provide for accurate disease tracking, and correct
diagnoses of ME/CFS patients and inadequate tracking of the misperceptions in the medical community that have
ME/CFS in medical and death records. But even considering magnified the burden of an already horrific disease. n

16 The Solve ME/CFS Chronicle

 ADVOCACY

PATIENT VOICES
In this recurring section of The Solve ME/CFS
Chronicle, SMCI will feature the creativity and
talent of the ME/CFS community. Every issue
you can find the art, writing, or other creations
of ME/CFS patients here. To submit an item to
Patient Voices, please email Emily Taylor at
ETaylor@SolveCFS.org.

This quarter, we feature patient advocate Jennifer Brea available at press time. Funding for the film was provid-
and her new documentary, Unrest (formerly titled Canary ed in part by more than 2,500 Kickstarter backers who
in a Coal Mine). contributed to the project back in 2013.

Unrest poignantly and effectively tells the story of Jen “I’m thrilled and honored that this documentary film
and her husband Omar as they face the challenges and is launching at Sundance,” said Jen Brea, who directed,
upheavals of a life suddenly redefined by a disability produced, and appears in the film.
that no one understands. It also demonstrates how ME
has affected other patients and their families around We at SMCI enormously admire Jen for her vision,
the world as well as the physicians and researchers who passion, and perseverance in creating this important
work with them. film. We trust this documentary will obtain broad
distribution so that many people will come to under-
Unrest earned a coveted spot at the 2017 Sundance Film stand how devastating this disease is.
Festival, premiering in the documentary competition
in late January. Results of the competition were not yet We applaud you, Jen! n

www.SolveCFS.org 17
 NEWS AND UPDATES

SMCI Answers Reader Questions

In this section of The Solve ME/CFS Chronicle, SMCI addresses common questions
we receive from those in the ME/CFS community.

Why does your organization call this disease ME/CFS?

CFIDS, SEID, ME, CFS—after a while, it all starts
to look a bit like alphabet soup. The disease we
call myalgic encephalomyelitis (ME), commonly known
as chronic fatigue syndrome (CFS), has probably had
more name changes than most pop stars. But with all
the various names on the table, why has our organiza-
tion chosen ME/CFS?

As described in the 2015 Institute of Medicine (IOM)

report, the name “chronic fatigue syndrome” results in
“stigmatization and trivialization and should no longer
be used as the name of this illness.” Most every patient The 2015 IOM report proposed a new name: systemic
agrees that this 1980s name coined by the Centers for exertion intolerance disorder (SEID). Why don’t we use
Disease Control and Prevention (CDC) fails on multiple SEID? This name has not caught on, and if we were use
levels. It neither describes the disease meaningfully nor it no one would have a clue what we are talking about.
captures the seriousness of this disease.  While we despise the name chronic fatigue syndrome
for trivializing the disease, it unfortunately remains the
The majority of the patient community prefers the most familiar name to most people.
earlier name, “myalgic encephalomyelitis,” which
originated in the UK and is actually a highly technical ME/CFS is a hybrid term for a community and disease in
term for inflammation in the brain and central nervous transition. It combines the older and more broadly rec-
system. But while many patients who suffer from ME/ ognized “CFS” with the less stigmatized “ME,” which is
CFS exhibit this symptom, many others do not. And becoming more commonly used. Many governments and
although inflammation is a common symptom, it is not health authorities have recently adopted the term “ME/
generally thought of to be the cause of the unique array CFS,” which has evolved to become the most accessible
of varying symptoms associated with this disease. So term to meet the needs of the broadest audience. The
many would argue that while ME connotes seriousness, Solve ME/CFS Initiative adopted this name so that our
it does not correctly reflect the key cause or symptom of organization would be accessible and understandable to
the disease. medical, academic, patient, and government audiences
alike. 

Why doesn’t SMCI also work on Fibromyalgia?

We often get asked why our organization is dedicated solely to ME/CFS rather than also tackling fibromyal-
gia, a disease from which many ME/CFS patients also suffer.

The reason is simple: while it is useful in some instances to examine diseases with overlapping features, fibromyal-
gia is a different disease, and we feel that we will have the most impact by focusing on a single disease. Unlike
fibromyalgia, ME/CFS currently has zero FDA-approved treatments. So, moving forward, we will remain laser
focused on finding treatments and, ultimately, a cure for ME/CFS. n

18 The Solve ME/CFS Chronicle

 NEWS AND UPDATES

Thank You for Standing with Us

Thank you for partnering with us in our mission to solve ME/
CFS. Whether you contributed financially, in volunteer time, via Goal: $1.6 Million
acts of advocacy, or with moral support, we are grateful to have
you with us in this battle. We fell slightly short of our $1.6 mil-
$1.60M
lion fundraising target for 2016; however, together we raised
Dec. 31, 2016
over $1.5 million—a solid increase over our 2015 budget.
$1.44M $1.55M
As difficult and challenging as 2016 was, it was also an eventful and $1.33M
productive year. With your support, we $1.28M
• Launched our SMCI-Directed Research Studies focused on key Dec. 31,
areas where we believe the answers to ME/CFS will be found
$1.12M 2015
• Awarded five Ramsay Award Program research grants to deserv-
ing scientists, again focusing on our key areas of interest

• Began upgrades to our biobank and development of our state-of- $960K

the-art patient registry

• Advocated to reinstate CDC funding for our disease $800K

• Met with leaders and key influencers on Capitol Hill to increase
awareness for our disease
$640K
• Strengthened our working relationship with the National Insti-
tutes of Health and pushed for increased spending for ME/CFS
$480K
We received over 3,800 donations in 2016. We are so grateful, both
for the dollars themselves and for the confidence in our work that
your gifts represent. Your contributions fueled our work every step $320K
of the way. We look forward to working together for even greater
accomplishments in 2017. n
$160K
As a patient who’s contended with the physical and emotion-
al challenges of CFS for more than 25 years, it’s gratifying and
heartening that the Solve ME/CFS Initiative is there for people like
myself, working hard on our behalf with compassion and commit-
SMCI
ment. Combining sensitivity, integrity, and conscientious profession-
alism, SMCI provides unique advocacy but also hope, encouragement,
Fundraising
and a spirit of camaraderie. My husband and I believe in the Solve 2016
ME/CFS Initiative; they have earned our respect and confidence, more
than justifying our continued support. I applaud their efforts.
—Janet Engelhardt

www.SolveCFS.org 19
 Solve ME/CFS Initiative NONPROFIT
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Los Angeles, CA 90036 PERMIT #3235
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ADDRESS SERVICE REQUESTED

STAY IN TOUCH!
Solve ME/CFS Initiative
Carol Head Named 2017 Health Hero
5455 Wilshire Blvd., Suite 1903 by O, The Oprah Magazine
Los Angeles, CA 90036

Telephone: 704-364-0016 SMCI President Carol Head was hon-

E-mail: ored last month by O, The Oprah Mag-

Communications@SolveCFS.org azine as a “2017 Health Hero,” one of
Website: SolveCFS.org fourteen “visionaries who are healing
Facebook:www.facebook.com/
bodies, minds, and communities.”
SolveMECFSInitiative

Instagram: Solve_CFS Although we would have preferred a more

substantive piece (and inclusion of “myalgic
LinkedIn: Solve ME/CFS Initiative
encephalomyelitis,” or ME, as our disease
Twitter: @PlzSolveCFS name), we are touched that Oprah has

YouTube: recognized the importance of featuring this

www.youtube.com/SolveCFS devastating disease. With over 2.4 million the millions of patients who continue to
paid subscribers, being featured in O, The suffer, although she maintains that she is no
Solve ME/CFS Chronicle archive: Oprah Magazine provided much-needed pub- hero. Says Carol, “When we finally under-
SolveCFS.org/archive lic exposure for our disease. stand the devastation of this life-destroying
Humans of ME/CFS: disease—when there’s significant funding
HOMECFS.SolveCFS.org Carol humbly accepts this honor in the to support research and scientists discover
name of the hundreds of advocates who have a cause and cure for ME—then we’ll have
TO SUPPORT SMCI worked for recognition for this disease and heroes.” n
DONATE.SolveCFS.org