Same Mission | New Name

May 30, 2014

Solve ME/CFS Initiative

We’re delighted to announce that The Solve ME/CFS Initiative has a new name – the Solve ME/CFS Initiative.   While our name has changed, our mission steadfastly remains the same:  We will make ME/CFS understood, diagnosable and treatable.

Why the change?  We recognize the many changes in our organization and our illness space since the organization was first named so long ago in 1987.  While the name of our illness continues to be controversial, “ME/CFS” better reflects today’s understanding. And we believe that the word “initiative” (defined as ‘leading action’), expresses our strong commitment to funding ground-breaking research.

Since our organization was founded and named in 1987, we have been the leading organization focused on this illness.  Over the years, we’re proud of our remarkable advances regarding this controversial and misunderstood disease.

  • Under the 22-year leadership of Kim McCleary, the organization’s first CEO, the Association played an integral part in developing a policy ruling for the Social Security Administration that recognized CFS as a disabling condition.
  • We are the leading private funder of ME/CFS research, directly funding $5.5 million in ground breaking research which has been leveraged into more than $12 million in additional ME/CFS research.
  • The organization fought to create and continues to advocate to sustain a dedicated federal advisory committee on ME/CFS research and education (CFSAC).
  • We helped expose the misappropriation of $12.9 million in CDC spending, restoring these funds to ME/CFS research.
  • We led the first-ever public awareness campaign for ME/CFS, led lobbying events, organized Congressional briefings and regularly deliver testimony at numerous federal hearings and meetings.

Four years ago, guided by a desire to move into a new era of scientific progress on ME/CFS, the Association made a strategic decision to heighten its focus on research.  Our thinking was simple – the best way to use our precious dollars is toward solving this despicable illness.

Today, led by President and CEO, Carol Head, the organization continues to drive its mission forward – to fund research that will make ME/CFS understood, diagnosable and treatable.  How do we do that? By providing more funding for high-quality ME/CFS studies, fostering increased collaboration among ME/CFS researchers and pushing the federal government to make ME/CFS research a higher priority.  We are working to leverage our experience, relationships and collective knowledge to propel the ME/CFS research field forward. We are a catalyst for scientific advances that translate into better care for ME/CFS patients. We are accelerating ME/CFS research.

As we continue our efforts to make ME/CFS widely understood, diagnosable, and treatable, it is fitting that we have a name that more accurately reflects who we are: The Solve ME/CFS Initiative. We trust that you will continue this journey with us as we work towards a day when ME/CFS is no more.


ME/CFS Thought Leaders Come Together for SMCI Research Advisory Council Meeting

October 14, 2016

RAC meeting participants, pictured left to right: SMCI President Carol Head; Michel Silvestri, PhD, Sweden; Dr. Vicky Whittemore, NIH; Sheila Stewart, PhD, WashU; Natalie Block, MD, MPA, Mount Auburn; Anthony Komaroff, MD, Harvard; SMCI Vice President for Research and Scientific Programs Zaher Nahle, PhD, MPA; Jose Montoya, MD, Stanford; Cindy Bateman, MD, Bateman Horne Center; Sue Levine, MD, CFSAC; Peter Rowe, MD, Johns Hopkins Medical Center; Andy Kogelnik, MD, PhD, Open Medicine Institute (not pictured

On Saturday, October 8, 2016, the Solve ME/CFS Initiative brought together some of the top minds in ME/CFS clinical care and research to collaborate on the key issues facing ME/CFS today. Dr. Vicky Whittemore of the National Institutes of Health (NIH) also joined our discussion.

The program began with a morning closed session led by Dr. Zaher Nahle, where a number of internal SMCI research and scientific programs were evaluated and discussed.

The afternoon session was kicked off by Dr. Vicky Whittemore, outlining her experience within the NIH and her efforts to build internal support for ME/CFS. As she manages the ME/CFS portfolio and the Trans-NIH Working Group on ME/CFS, Dr. Whittemore drew on her five years of experience with epilepsy research. With two requests for applications (RFAs) on the way, Dr. Whittemore also addressed efforts to target and prioritize issues faced by the ME/CFS community, such as developing a common data elements project and adding telemedicine in order to reach house- and bedbound patients. Dr. Whittemore specifically pointed to the successful advocacy of the patient community, like the 55 congressional signers on the letter to NIH Director Collins and the ME/CFS stories featured in key Capitol Hill publications, in providing her with key tools to help with her efforts to get the NIH to take action. Dr. Whittemore also praised the type and nature of coordination that SMCI has developed with the NIH to serve the community. SMCI is pleased that Dr. Whittemore is so deeply committed and knowledgeable, as she works to strengthen NIH’s commitment to ME/CFS.

Dr. Anthony Komaroff of Harvard Medical School then gave his vision and updates on the field. He began by describing the very first ME/CFS patient he ever encountered. “That thing that makes you feel sick won’t turn off,” he recalled the patient saying. Dr. Komaroff continues to think that this simplified statement is not too far from the truth. In an in-depth discussion of the leaky gut, avgas nerve, and blood brain barrier, Dr. Komaroff explored the brain’s immune responses and how cell exhaustion and chronic inflammation can be triggered. Dr. Komaroff emphasized the promise of investigations addressing sickness response and gut microbiome. He also expressed his desire for the scientific field to collaborate with others who have multi-disciplinary expertise, calling for centers of excellence, a joint conference, and a collaborative network working toward distinguishing and subtyping patterns of ME/CFS.

Dr. Jose Montoya of Stanford University followed with his own remarks, elaborating on the challenges of recruiting the next generation of researchers and clinicians in the field by using personal accounts of medical students and fellows displaying uncertainly toward ME/CFS projects. Dr. Montoya’s approach is to combat reluctance on the part of the new generation with data and facts about the disease. He finished up by describing many projects at Stanford and elsewhere, including, among other things, findings on leptin, cytokine studies, and the links between transforming growth factor beta and white matter in ME/CFS.

Dr. Andy Kogelnik then teleconferenced in to give his remarks and elaborate on his work and experience with Rituxan. Dr. Kogelnik is working with multiple subgroups and noted that some have seen substantial recovery—even going from bedbound to functional. But he cautioned that there is no indication these results are long term, and more testing will be needed. Dr. Kogelnik warned of an upcoming clinical care crisis with the looming retirement of the few practicing clinicians still in the field and warned that the NIH is not moving far enough fast enough. The NIH’s real challenge, he noted, was its structure, which is set up to only evaluate one mechanism at a time; ME/CFS does not fit into that framework. To overcome this challenge, Dr. Kogelnik recommended identifying pathways of research that are of interest to the institutes and will accommodate the rigid agency structure.

Dr. Sue Levine, founder of The Levine Clinic in Manhattan and chair of the U.S. Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (known as CFSAC) also gave remarks on the state of care for ME/CFS patients. Dr. Levine described her efforts in medical education and encouraged the field to work in a multi-disciplinary fashion, emphasizing centers of excellence as a vital tool going forward. She proposed that the NIH and SMCI create a fellowship for mid-career physicians to encourage new specialists in the field and cited the IOM report as an example of the field coming together for more collaboration. Dr. Levine ended on a hopeful note, describing progress such as Kaiser sending physicians to ME/CFS clinics to improve their understanding of the disease and a new clinic scheduled to open in Cleveland, OH, in April 2017.

Dr. Peter Rowe of Johns Hopkins Medical Center described his vision for the field and reported on his recent findings, including work on orthostatic intolerance and milk in adolescent ME/CFS patients. Dr. Rowe noted that testing orthostatic intolerance is key to the illness and emphasized that his findings demonstrated statistically significant improvement for all patient subgroups when ceasing milk product intake. Dr. Rowe elaborated on the autoimmune, leaky gut, and blood-brain barrier points from previous discussions, noting that the hypermobility of Ehlers-Danlos syndrome (EDS) may have potential connections.

Dr. Cindy Bateman, the founder and medical director of the Bateman Horne Clinic in Utah gave a presentation as well, describing her experience and challenges in caring for patients with ME/CFS. She elaborated on the financial struggles that specialists face as well as difficulties with insurance coverage, consults, and uninformed primary care physicians. Dr. Bateman detailed how frustrating the clinical setting can be for patients with such difficulty gaining access. She also discussed the use of technology to consult with patients outside of office visits and how the use of physician assistants and nurse practitioners can help cut costs.

Throughout the session, productive exchanges and discussions took place between presenters and RAC members, including Drs. Stewart and Silvestri as well as members of the SMCI board of directors who were in attendance. As all SMCI board members are patients or family members of patients, their interest is intense and personal.

The Research Advisory Council expressed its enthusiasm for the direction of SMCI’s research plans, and the day concluded with several plans for collaboration between clinicians, researchers, and patients under the guidance of SMCI.

CDC Convenes In-Person Meeting of Its Technical Development Workgroup (TDW)

October 14, 2016

blurry-zaherThe long-awaited, in-person meeting for members of the Centers for Disease Control and Prevention (CDC) Technical Development Workgroup (TDW) took place on September 26, 2016, in Atlanta, GA. The advocacy community has long been frustrated that information on the CDC website, which is an important “go to” source of information for patients, doctors and other medical professionals, has information that is in some cases incorrect and potentially harmful.

The meeting, preceded by remarks from Dr. Beth Unger, was noted for being professional, transparent, and productive—a much-sought-after change for the CDC.  It is notable that many senior-level CDC officials were present—perhaps an indication that the interests of patients are being heard. The full-day meeting included the following four sessions:

  • IOM Diagnostic Criteria, Post-Exertional Malaise (PEM), and Diagnostic Algorithm
  • How to Present Website Content
  • Portals/Information for Different Audiences
  • Discussion of Education Materials

Leading ME/CFS clinicians, researchers, and advocacy organizations participated, including several members of SMCI’s organization (such as board member Rick Sprout and members of the Research Advisory Council—namely Dr. Anthony Komaroff, Dr. Sue Levine, and Dr. Cindy Bateman). Dr. Nahle, who has served on the TDW since its formation earlier this year, led a group discussion.

This meeting was convened by the CDC to ensure that any educational materials on ME/CFS are evidence-based, understandable, and useful to stakeholders. Representatives from the FDA and other agencies as well as those from medical education portals were also in attendance.

The meeting was an opportunity for SMCI to present its longstanding position on disseminating current and up-to-date information on ME/CFS. It was also an opportunity to hold side discussions regarding ongoing projects with Dr. Unger and CDC officials as well as coordinate with other organizations and members of the SMCI community.

Said SMCI Vice President for Research and Scientific Programs Dr. Zaher Nahle, “This event is unprecedented, for it is both symbolic and practical. It is part of the historical record.”

New Research Project Launches through SMCI’s Targeted Initiative Research Program

October 14, 2016

hanson-r1st-targeted-initiativeSMCI recently launched a new partnership as a component of our targeted initiative program, within our Pathways and Biomarkers Discovery Track. The project consists of original research in the areas of bioenergetics, metabolomics, and lipidomics using high-throughput technology. Importantly, this new SMCI research project relies on blood from well-qualified patients from The Levine Clinic; it also builds on recent discoveries in gut microbiome from Dr. Maureen Hanson’s lab, which uses these same patients.

As always, we partner with experts. In this instance, we have brought together the following group: Dr. Hanson, a professor of molecular biology and genetics at Cornell University; Dr. Levine, a member of SMCI’s Research Advisory Council and the chair of the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee; and Metabolon, an industry leader in the discovery of biomarkers through the use of metabolomics (a “high-throughput technology” and a powerful scientific approach for the discovery and development of drugs and for early disease diagnosis).

Results from this new study have the potential to be quite significant and may include

  • Expanding the gut microbiome findings and providing additional context and clarity
  • Identifying specific biological signatures from well-characterized patients
  • Developing mechanistic insight into comorbidities associated with ME/CFS
  • Uncovering potential new biomarkers that could help with rapid and effective diagnosis
  • Comprehending signaling pathway interactions involved in the disease
  • Supporting existing projects and hypotheses by us and others as well as generating new hypotheses
  • Classifying patients based on molecular alterations
  • Developing precision medicine profiles, categories, and subcategories in ME/CFS with additional patients

We expect that the initial phase of this new project will be completed in the next quarter, with results requiring additional mechanistic investigation to establish findings as reproducible and validated targets.

Dr. Zaher Nahle, SMCI’s vice president for research and scientific programs, stated, “We could not be more excited about our partnership with Dr. Hanson, Dr. Levine, and Metabolon. We look forward to analyzing the metabolome of both early- and late-stage ME/CFS patients and their controls using Metabolon’s multiplex platforms. It is our hope that this study will reveal signatures and identifiers pointing toward biomarkers as well as a molecular basis for the disease and its subgroups. The results from this study will help us to hone or validate our hypotheses. And, what’s more, we will be able to seek new partnerships and assist the work of others by publishing these results alongside our collaborators.”

UK Holds Third Annual CFS/ME Research Collaborative (CMRC) Conference

October 14, 2016

cmrcThe annual CMRC conference, executed by UK-based charity Action for ME, is a major event for ME/CFS in the United Kingdom. This two-day conference took place September 28-29 in Newcastle upon Tyne, with active participation from all CMRC member organizations (including Action for ME, AYME, ME Association, and ME Research UK).

Leading scientists and clinicians, as well as representatives from leading funding agencies like the Medical Research Council and Wellcome Trust, also attended, as did a large group of patients, advocates, researchers, and interested organizations.

Dr. Nahle, an invited speaker, gave a lecture in the “Big data, Biomarkers, and Stratification” session, where he discussed SMCI’s research work. He also participated in a workshop on postural orthostatic tachycardia syndrome (POTS) and sat on a panel of experts for a public discussion regarding pressing challenges in ME/CFS science, policy, and healthcare (pictured). Other experts on this panel included Dr. David Patrick (UBC, Canada), Dr. Julia Newton (Dean of Medical School, Newcastle University, UK), Dr. David Ford (Swansea University, UK), and Dr. George Davie Smith (University of Bristol, UK).

The meeting was an opportunity to collaborate and develop several partnerships, including one we started earlier this year with UK Biobank. Other individual meetings with authorities in the field, such as Drs. Charles Shepherd, Stephen Holgate, and Hugh Perry, among others, were also very productive. We extend our sincere gratitude to the meeting organizers—especially Ms. Sonya Chowdhury, executive director of Action for ME—for an excellent meeting filled with many thought-provoking discussions.

The official CMRC conference report will be released in the month. For additional conference information, please visit

October Research 1st – Dr. Nahle’s Letter

October 14, 2016

zaher-letterDear Friends,

Earlier this year, we announced the formation of our Research Advisory Council (RAC), consisting of leading ME/CFS experts and thought leaders across many disciplines. This distinguished assembly met in person last weekend for a full day of workshops, discussions, and lectures as part of our annual gathering, which took place this year in the DC area.

A range of pressing issues in ME/CFS were analyzed, in a candid and collegial atmosphere, including recent scientific and medical developments, changes at government agencies, and existing clinical and research challenges. Also discussed were ideas to move the field forward and create value in the space. In this issue of Research 1st, we’ve dedicated an additional piece to the activities of this important meeting. Notably, Dr. Vicky Whittemore, the program director in charge of ME/CFS at the National Institutes of Health, was also in attendance and contributed important perspectives on the work and progress at the agency.

Participating RAC members included

  • Anthony Komaroff, MD,Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School
  • Jose Montoya, MD,Professor of Medicine, Division of Infectious Diseases, at Stanford University Medical Center
  • Peter Rowe, MD,Director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center
  • Andreas Kogelnik, PhD, MD,Founder and Medical Director, Open Medicine Institute (by phone)
  • Cindy Bateman, MD,Founder and Chief Medical Officer of the Bateman Horne Center in Salt Lake City, Utah
  • Susan Levine, MD,Chair of the U.S. Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee and founder of The Levine Clinic in Manhattan
  • Sheila Stewart, PhD,Professor of Cell Biology and Physiology at Washington University School of Medicine St. Louis
  • Michel Silvestri, PhD, Head of Clinical Laboratory, Gotland Region, Sweden
  • Nathalie Bloch, MD, MPA, Primary Care Physician and Internist at Mount Auburn Teaching Hospital, a Harvard Medical School Affiliate in Cambridge, Massachusetts.

Dr. Peter Rowe summed up the meeting saying, “I was impressed with the depth of clinical experience with ME/CFS among the RAC members—really many of the people whose work has been instrumental in making progress in this field over the last 25 years. I am enthusiastic about the SMCI research direction and especially the recruitment of talented investigators who work in different scientific disciplines—they will almost certainly bring fresh insights to our understanding of the illness.”

Indeed, RAC members enrich all research initiatives at SMCI. And we collaborate closely with these leaders on a variety of professional engagements such as study design, grant evaluation, investment in research, advocacy for research funding, grant-making processes, medical education, our BioBank and Patient Registry, strategic partnerships with academic centers and industry, patient privacy, and issues related to medical ethics, data integrity, and electronic health record management. From our perspective, creating a space for such “cross-pollination” among committed luminaries for the exchange of ideas under one roof will pay dividends going forward; that’s why it’s so central to our outlook on making progress in ME/CFS.This panel of respected medical practitioners, basic scientists, and technology experts is a critical component of SMCI’s mission to make ME/CFS understood, diagnosable, and treatable. We are thrilled that they have decided to be part of our organization in a true collaborative fashion.

Following the meeting, Dr. Komaroff expressed his sentiments about the organization, stating, “Solve ME/CFS Initiative remains a very important force in promoting research and education regarding ME/CFS.” We pledge to continue earning that trust from our thought leaders through rigorous work and a dedicated agenda.


Zaher Nahle
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative

Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound – September 21, 2016

September 21, 2016

Great news and huge success illustrating the power of ME/CFS patient advocates

picture1A preliminary re-analysis of the newly released PACE trial data was published today revealing that the initial results of the PACE trial included significantly inflated “recovery” rates, from 4% to 22%, attributed to exercise therapies.

The PACE trial results, published in 2011 by The Lancet, were immediately controversial, concluding that exercise and psychotherapy were the most beneficial treatment regimens for patients with myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS). The Solve ME/CFS Initiative and many others have repeatedly called for a full retraction of the PACE trial and critical review of its results. The PACE treatment approach has been shown by follow-up studies to be ineffective and potentially harmful to patients and yet continues to be cited by doctors and government officials alike.

According to the new data analysis, cognitive behavioral therapy (CBT) and graded exercise therapy (GET) did not help patients recover. Using the PACE trial’s original protocol, the data re-analysis revealed that adding these therapies to standard medical care made no statistically significant difference.

“This re-analysis demonstrates that the previously reported recovery rates were inflated by an average of four-fold,” summarized Alem Matthees, the primary author of this recent re-analysis. “Furthermore, in contrast with the published paper by the trial investigators, the recovery rates in the cognitive behavioural therapy and graded exercise therapy groups are not significantly higher than with specialist medical care alone.”

picture2*Source: Mathees A. et al. A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data. 21 September 2016.

This analysis was performed by ME/CFS patients Alem Matthees and Tom Kindlon working collaboratively with independent statisticians. Philip Stark, Professor of Statistics at the University of California, Berkeley, has endorsed this analysis and Bruce Levin, Professor of Biostatistics at Columbia University, has confirmed the team’s calculations and also endorsed the results. Mr. Matthees was victorious in his two-year appeal and legal battle seeking the data release in order to conduct this analysis. Queen Mary University of London released the PACE trial data only two weeks ago after being ordered to by a court ruling.

To read the analysis in its entirety, visit:

Dr. Zaher Nahle, Vice President for Research and Scientific Programs at Solve ME/CFS Initiative, wrote the following in response to the good news:

“This preliminary re-analysis of the PACE trial outcomes obtained from patient data acquired through a Freedom of Information Act request is a huge step forward, a watershed moment that has been awaited with anticipation by our community for far too long. It is also jaw-dropping in what it uncovered.

While this new re-analysis confirmed what patients knew all along regarding the fallacies of the benefit of CBT and GET in ME/CFS, it exposed, using the trial’s empirical data, disturbing facts related to the findings and outcomes of that trial. It revealed sloppy science.

Two immediate steps must now follow: 1) a retraction of the original paper with an immediate public erratum detailing this new discovery. While the retraction process is in motion, the opportunity should be given to the study authors to examine this new re-analysis;

2) a moratorium on all ongoing research activities including grants, trials, proceedings or any scholarly activities that were based in full or in part on the original trial results and its now challenged conclusions.”

The Solve ME/CFS Initiative (SMCI) joined hundreds of patients, scientists, and researchers calling for a retraction of PACE trial, a public release of the data sets, and a reanalysis of the results. SMCI wrote to The Lancet parent company, RELX Group, in protest and called for justice.

SMCI offers heartfelt congratulations to Mr. Matthees who filed his initial Freedom of Information Act Request to release the PACE trial data two years ago. His goal was conducting exactly such a re-analysis as he completed today. SMCI also congratulates journalist David Tuller who had been instrumental with his systematic and well-researched analysis of the flaws in the PACE trial design.

Read Dr. Nahle’s editorial breakdown of the problems with CBT and GET here:

Read SMCI’s letter to The Lancet parent company here:

Read more about Mr. Matthees legal victory here:

Read more about concerns with the PACE Trial here:

Listen to David Tuller, the journalist who initially broke the PACE trial story, discuss the study’s flaws here:

Advocates Obtain Congressional Support for Strengthened ME/CFS Research at NIH

September 9, 2016

LOS ANGELES, September 9, 2016 – After years of neglect by the National Institutes of Health (NIH), patients suffering from myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS), created a win today as members of Congress came together urging the NIH to do the right thing and strengthen ME/CFS research.

In a formal U.S. House of Representatives letter published today (“the letter”), 55 members of Congress called upon NIH Director Francis Collins to strengthen the NIH’s efforts in ME/CFS biomedical research through a reinvigorated trans-NIH ME/CFS working group as well as additional intramural and extramural research programs.

As the letter explains, “ME/CFS is a complex, debilitating, and chronic disease afflicting 1 to 2.5 million Americans. It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually. Yet, as the Institute of Medicine noted in its report, ‘Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,’ there has been ‘remarkably little research funding’ to date to discover its cause or possible treatments.”

Thanks to the hard work of #MEAction, the Solve ME/CFS Initiative (SMCI), and dozens of independent advocates, the letter attracted a broad coalition of bipartisan cosigners led by U.S. Representatives Zoe Lofgren and Anna Eshoo of California. In addition to encouraging advocates all across the country to reach out to their own representatives, SMCI President Carol Head also wrote a personal letter to all 435 representatives, urging them to sign onto the letter.

Said SMCI President Carol Head, “The NIH has failed to live up to its commitment to ME/CFS patients and has not followed the recommendations put forth in the 2015 IOM report; now, thanks to the actions of a coalition of hardworking advocates and members of Congress, we expect this to change.”

To read the letter and see the 55 members of Congress who signed on, view the letter here.

About the Solve ME/CFS Initiative (SMCI)

The Solve ME/CFS Initiative (SMCI) was founded in 1987 and has established itself as the leading non-profit organization dedicated to ME/CFS. The organization’s mission is to make ME/CFS widely understood, diagnosable, and treatable by stimulating and conducting research aimed at the early detection, objective diagnosis, and effective treatment of ME/CFS. SMCI is the first and only ME/CFS organization to earn the highest possible distinction (a 4-star rating) from Charity Navigator, America’s largest independent charity evaluator.

York Mix: How one remarkable York artist and ME/CFS patient went from local craft club to the Royal Academy

August 21, 2016

ME/CFS Patient, Bridget Bernadette Karn, at work in her studio

Last week, Claire Davies of authored a charming profile of a rising artist named Bridget Bernadette Karn who is also a patient with Myalgic encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS).

Bridget’s work will be featured at the Royal Academy of Arts Summer Exhibition in London through August 21st.

See Bridget at work below:

To read the article about Bridget’s story visit:

From the story on

“When Bridget Bernadette Karn began exploring felting six years ago she could never have imagined that she was on the path to the Royal Academy of Art.

Bridget developed a fascination with the arts at an early age. Life however got in the way as work, family responsibilities and health issues prevented her from developing an artistic career.

Undeterred, Bridget continued to study her passion at college, attending summer schools and evening classes whenever possible.

Then in 2006 she started an arts and crafts club close to her home at Acaster Malbis, near York.

“I wanted somewhere that likeminded people could come together, sharing ideas and skills,” she said.

“Members brought in different crafts for each other to try and one of the ladies suggested felting. I had never tried it before so had a go. Straight away I could see the potential for picture making.”

Bridget continued to experiment with felt picture making until 2012 when a supportive friend saw the picture of sunflowers she had created during her time recovering from an operation and suggested she show it at the Boston Spa Art Festival.

This experience was the starting point for developing her passion for felt picture making into something more than a hobby.

Chronic fatigue

Time was something of a premium though as she had a busy life; being a full time carer and running another business alongside a part time job. But the death of her father in 2013 left her exhausted and struggling to cope with chronic fatigue syndrome.

“I realised that the world didn’t stop without me and I needed to take some time to rest and let go of some of my responsibilities.

“Making my felt pictures played a large part of my recovery.”


The work in the exhibition, Frosted Woodland

This was a turning point for Bridget and – with a growing profile on Facebook – earlier this year she asked her followers to help her choose which piece she would submit to the Royal Academy of Arts Summer Exhibition.

The work in the exhibition, Frosted Woodland

They chose Frosted Woodland. After reaching the second round of judging Bridget informed her followers that the piece was on its way to the Royal Academy to be viewed. There was an incredible response with over 600 wishes of good luck.

Earlier this summer Frosted Woodland was chosen to be apart of the exhibition, where it is on show for nine weeks until August 21.

Overwhelming congratulations

This is a wonderful result not only for Bridget but for textile artists everywhere, who can sometimes struggle to be taken seriously in the art world. Bridget was thrilled.

“Well, over the moon doesn’t touch how it feels. Congratulations have been overwhelming and my email inbox is overflowing. If only I could bottle this feeling and save it!”

London Tribunal Orders Release of PACE Trial Data – August 16, 2016

August 16, 2016


Very good news out of London today!

Today’s decision means it’s likely the PACE trial, which ME/CFS patients have long objected to, will be forced release its underlying research data. We believe a review of this data will substantiate the study as invalid, which patients and other researchers have long believed.

This is an important development in the protracted legal and scientific battle regarding the PACE trial, whose results have caused patient harm. Today’s ruling will secure the release of the PACE trial data so long as the university does not decide to appeal to the Upper Tribunal.

PACE trial results, published in 2011 by The Lancet, were immediately controversial, concluding that exercise and psychotherapy were the most beneficial treatment regimens for patients with myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS). The Solve ME/CFS Initiative and many others have repeatedly called for a full retraction of the PACE trial and critical review of the results, seeing as the PACE treatment approach has been shown by follow-up studies to be at best ineffective and at worst harmful to patients.

Journalist David Tuller published a scathing article series in which he investigated the study design, execution, and conclusions—finding significant deficits at every turn. Recently, the PACE trial was presented to the largest gathering of statisticians in North America as a cautionary tale of bad science. The PACE trial was “one of the most damaging cases of bad statistical practice that I have personally encountered in my years as a journalist,” reported science writer Julie Rehmeyer.

Update: Queen Mary University of London (QMUL) issued a formal written statement in response to the Tribunal dismissing their appeal yesterday. They reiterate that the PACE trial complied with UK clinical trial regulatory framework and emphasize the strict confidentiality of the data. The statement goes on to say that the University “has shared data from the PACE trial with other researchers only when there is a confidentiality agreement in place and an agreed pre-specified statistical plan for data analysis.”

Based on this statement, it would not be surprising if QMUL chose to appeal the decision to a higher tribunal.

Read the Tribunal decision in its entirety here:

Read more about the recent First-Tier Tribunal decision here:

Read more about concerns with the PACE Trial here:

Listen to David Tuller, the journalist who initially broke the PACE trial story, discuss the study’s flaws here:

Update on August 1 Meeting with Dr. DeSalvo from HHS

August 5, 2016

Earlier this week, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met with Dr. Karen DeSalvo, acting assistant secretary for health. The purpose of the August 1 meeting was to impress upon Dr. DeSalvo how woefully inadequate the response to this disease from the U.S. Department of Health and Human Services (HHS) has been—that it is still too slow and too little—and to call on HHS to dramatically step up its commitment to ME.

Also participating in the meeting from HHS were Andrea Harris, Dr. DeSalvo’s chief of staff, and Dr. Nancy Lee, deputy assistant secretary of health, from the Office on Women’s Health.

The meeting with Dr. DeSalvo, which lasted a full hour, was positive and constructive. Dr. DeSalvo was very engaged and well prepared, leaving those participating with a sense of being heard.

The discussion focused on the need for a fundamental change and some options to achieve that change, such as a community/agency task force. We discussed the many reasons why such a fundamental change is needed: the level of debility of ME patients and the number of patients affected; the long history of neglect and stigma of the disease; the definitional challenges; the lack of research and researcher funding, which has had a chilling effect on researchers, academic centers, and pharmaceutical companies; the inaccessible and often inappropriate medical care and disbelief of doctors; and HHS’s failure to meaningfully engage the community or follow up on the recommendations of its own advisory committee, the CFSAC. As Dr. DeSalvo had seen in her experience in New Orleans after Katrina, these factors have left ME patients with a sense of being left for dead by all those who should be helping.

Dr. De Salvo asked a number of insightful questions about these issues and also asked about opportunities with efforts like the Precision Medicine Initiative. The other important topic that was discussed was the critical need to include ME in the transition plan for the next administration to ensure that current efforts do not stall.

Dr. DeSalvo agreed to reach out to the Precision Medicine Initiative and also to her counterparts at the Veteran’s Administration and the Department of Defense to identify additional opportunities. She has agreed to meet again in October. In the meantime, we will follow up with the Dr. DeSalvo’s office with specific requests to get additional information and to follow up on suggestions made in the meeting. Examples include a request to NIH on its funding commitment by institute for the next three years and a summary of HHS’s current and planned initiatives for this disease.

Carol Head of Solve ME/CFS Initiative said, “I was thrilled to be included in such a high-level meeting, and I look forward to future collaboration between the ME/CFS community and HHS.”