Resource Library
A Conversation with Novelist Roger King
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- Last Updated: 23 January 2016 23 January 2016
The Massachusetts CFIDS/ME & FM Association and the Central Massachusetts Area Support Group had the pleasure to host author Roger King for a book reading on August 4, 2012 in Sturbridge, MA. "Love and Fatigue in America" (University of Wisconsin Press, March 26, 2012) is Roger King's fifth novel, a sometimes humorous, but always inspiring narrative about living with Myalgic Encephalomyelitis (ME), otherwise known as Chronic Fatigue Immune Dysfunction Syndrome or Chronic Fatigue Syndrome (CFIDS/CFS).
M
r. King displayed his humor and wit in explaining how he came to write "Love and Fatigue in America." Originally from England, he lived and worked in twenty different countries, primarily for United Nations agencies. He came to America on a teaching stint in Washington State when he soon fell ill. As a stranger in a new country, he thought it would be better to conceal his medical condition while trying to carve out a new life. This process led to new insights about CFS/ME, health and healthcare and countless stories from folks along the way, which ultimately led to this book - in fact, King felt it was unavoidable, being a novelist. He realized that creative writing could communicate with people in a way that scientific papers cannot—already, readers' reaction, primarily from patients, has been generous and sincere.
Words and pages came to life as King delivered these with the charming lilt of his English accent. He allows the reader, and in this case, the audience to share his thoughts on falling ill. Initially in denial and assuming he would get well as in so many previous instances, such as his bout with malaria, King struggled to figure out what was going on within his body. King's novel adeptly conveys how this insidious illness can and will turn people's lives around—in his case, from this once successful, international teacher and author to the average person struggling with getting around town and through everyday functions.
The book tries to cover a lot of ground in one hundred short chapters which often change from narratives to vignettes and lists-a format that King felt very much reflected the fluctuating nature of CFS. Near the beginning of the book, he explained how he went to the gym after what he thought was a bout with the flu, and how he got dizzy and struggled to say upright. In one line he read "The sitting down doesn't end the going down." Everyone could relate. He decided to just wait it out, attracting as little attention as possible. He was alone by the time he was able to pull himself up, looked around and thought "A good distance down to the carpet. The carpet wants me." Everyone in the room laughed as they could sympathize with the statement. He assumed that a good night's rest might be all he needed to feel better.
Several weeks later and no sign of improvement, he finally dragged himself to the doctor's office, whom he named "Grumpy." Knowing the English socialized health care system, King coined the term "hands in your pockets" medicine. Papers, insurance and otherwise, income and fees had not been part of a doctor's visit -there, the only thing a patient had to do was be sick. Here, he was faced with inordinate amounts of papers as well as costs. Mr. King thought the American medical system was inefficient. Grumpy actually diagnosed CFS, but King had never heard of it.
In the chapter "How to be Ill" King read "Sufferers from Chronic Fatigue Syndrome are not good at being ill. You look well, you're not dying, you're complaint is modest. You are going to be trouble for a long time." Again, knowing laughter from the audience.
He adroitly takes the reader through the complications of decision making using the measure of energy expenditure as the currency. Does he get up and go to the bathroom, take a shower or eat? How do you manage the energy needed to handle a relationship? He navigates his emotions and lets the reader into his thought process.
There was a question and answer period and it was interesting how some of the questions regarding instability of the illness, planning outings or reaction to cancelled commitments were shared by all.
He was asked what it was like the first year when he was a visiting professor in WA and he got ill. He answered "It was a blur." Although Mr. King has done a couple of book readings to the general public, this was the first to a roomful of CFS/ME patients.
Hopefully our appreciation and emotional support will carry through.
Mr. King closed out the afternoon by reading his last chapter titled "The Benefits of Illness" (used with permission).
Your choices are limited
And therefore easier.
Small achievements are automatically promoted as big ones.
You save on shoe leather.
Any woman interested in you is likely to be nice
Though you hope not too nice.
Unpleasant women stay away from you
Though some are confused as to their category.
You learn a lot about the behavior of birds at your bird feeder.
Your illness drives away those frightened by the fragility of life
That is, most men.
You are always home for parcel deliveries.
You keep up with the world news.
Your week never need be empty
While there are doctors to visit.
You watch many films, often twice
Since you forget.
The quality of patience is not strained
Since it's unavoidable.
Your dog need not feel inferior to you
Since you lie down with him.
You appreciate for the first time the pleasures of gardens.
You receive sympathy
Though actually not that much.
You no longer become angry
Because it makes you sick.
You are freed from ambition
Because it makes you sick.
You avoid heartbreak
Because it makes you sick.
You know yourself inside out.
Spiritual wisdom is forced on you
Again and again and again.
You become a connoisseur of repose.
You are motivated to think of others
Since you are so tired of yourself.
You can go to bed in the afternoon
Without a moment's guilt.
You are as sensitive to the air
As is a sailor to wind.
You have the space and time to daydream.
You always possess a perfect excuse
Though you do not use it
Since there is no end to that.
A review of Roger King's book, by Jean Zimmer, is available at our website: Love and Fatigue in America.
Joint Request from the ME/CFS Community for Action - Positive Response from the FDA
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- Last Updated: 08 January 2016 08 January 2016
Advocacy works!
The ME/CFS Community received the letter below from a spokesperson at the Food & Drug Administration, agreeing to our request for a meeting to address streamlining drug and biomarker development for ME/CFS. A teleconference on this topic is planned for September 13, 2012.
Dear Colleagues:
The U.S. Food & Drug Administration (FDA) is pleased to invite you to a stakeholder teleconference between FDA and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients and advocacy organizations on September 13, 2012. Dr. Janet Woodcock, Director of the Center of Drug Evaluation and Research, will lead the call. The purpose of the call is to discuss issues of mutual interest and concern including the lack of approved treatment options available for ME/CFS and how treatment development might be facilitated.
The teleconference is scheduled for Thursday, September 13, 2012 from 10:00 am - 11:30 am. Registration is required and must be received by September 7, 2012. Early registration is recommended because telephone lines will be limited to the first 50 groups and/or individuals who register. FDA may limit the number of participants from each organization, as well as the total number of participants, based on current space limitations.
If you would like to participate, please send your name, email address, telephone number and affiliation information to Randi Clark (This email address is being protected from spambots. You need JavaScript enabled to view it.) by no later than September 7. Registrants will receive confirmation and additional information about the teleconference once registration has been received and accepted.
FDA looks forward to your participation.
This letter followed the announcement during a conference call on July 2:
Thank you for writing to Dr. Janet Woodcock, the Director of the Center for Drug Evaluation and Research (CDER) in the Food and Drug Administration (FDA), requesting a stakeholder meeting to discuss treatment options for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients. Your e-mail was forwarded to the Division of Drug Information for a direct reply.
The Health and Human Services (HHS) and FDA share your concern about safe and effective treatments for CFS and are sympathetic to the sometimes desperate situation of patients with illnesses and conditions such as ME/CFS, for whom there are no available therapies. Based on the letters and e-mails received from ME/CFS advocates, both HHS and FDA have already taken a number of steps to address this request for a stakeholders meeting.
On June 13 and 14, 2012, HHS convened an open public meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) opened by Dr. Howard Koh, MD, MPH, Assistant Secretary for Health. As you may know, the CFSAC is comprised of 10 voting members with clinical or research expertise in CFS, a patient advocate member, and 7 Ex-Officio members from various HHS agencies, including a representative from FDA. During the meeting, the committee heard 3 hours of public testimony that included a presentation by a drug manufacturer. In addition, there were separate presentations by 5 different ME/CFS advocacy organizations: the CFIDS Association of America, Speak Up About ME, PANDORA, Phoenix Rising, and the New Jersey CFS Association.
Separately from the CFSAC, HHS convened the Ad Hoc Workgroup on CFS to develop a Department-wide strategy to address CFS and allow active collaboration among agencies. So far, the workgroup has held two meetings with high level leaders of the following agencies: National Institutes of Health (NIH), Centers for Disease Control (CDC), Agency for Healthcare Research and Quality (AHRQ), Substance Abuse and Mental Health Services Administration (SAMHSA), Center for Medicare and Medicaid Services (CMS), Food and Drug Administration (FDA), and Administration for Children and Families (ACF). A third meeting is being scheduled for later this summer, where an important agenda item will be a FDA-hosted multidisciplinary scientific workshop on drug and biomarker development for CFS.
FDA is reaching out to individual patient advocates in order to better ascertain achievable goals for a stakeholder's meeting. This outreach has included teleconferences with various leaders of the advocacy campaign, including a call by Dr. Janet Woodcock with the following advocates: Robert Miller, ME/CFS Patient/Advocate; Patricia LaRosa, RN, MSN, New Jersey Chronic Fatigue Syndrome Association; Mary Dimmock, ME/CFS Patient representative; Denise Lopez Majano, founder of Speak Up About ME; and Cort Johnson, founder of Phoenix Rising.
Based on these calls, FDA plans to host a cross-agency coordinated multidisciplinary scientific workshop to address drug and biomarker development issues in ME/CFS.
As plans for a multidisciplinary scientific workshop on drug development are underway, FDA is continuing calls to stakeholders to assist in the planning of such a workshop. Stakeholders wishing to provide input into the planning of the drug development workshop should contact David Banks, PhD, at FDA at the following e-mail address: This email address is being protected from spambots. You need JavaScript enabled to view it..
Finally, efforts are underway at FDA to improve the infrastructure for drug development in the field of ME/CFS. To overcome obstacles that may be introduced by a fragmented approach to the disease, FDA consolidated all ME/CFS drug applications in the Division of Pulmonary, Allergy, and Rheumatology Products as of January 16, 2011. This consolidation has allowed for development of expertise in ME/CFS among reviewers in the Division, which will facilitate uniform criteria for drug development.
Again, thank you for your request regarding a stakeholder meeting on ME/CFS treatments. As outlined above, please know that HHS and FDA are actively pursuing a ME/CFS strategy in order to address this important issue.
Sincerely,
Mary Kremzner, Pharm.D.
Director, Division of Drug Information
Read the Joint Request from the ME/CFS Community for Action
Joint Request for Action from the ME/CFS Community
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- Last Updated: 23 January 2016 23 January 2016
Fourteen ME/CFS organizations and 19 individual advocates joined together to send the following letter to the Department of Health and Human Services (DHHS). A separate letter was sent to Dr. Janet Woodcock, Director of the Center for Drug Evaluation and Research.
Date: June 6, 2012
To: Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee
Dear Secretary Sebelius, Dr. Koh, and Dr. Lee:
We strongly believe there is an urgent need for the Department of Health and Human Services to undertake a strategic, coordinated, and fully-funded effort to meet the critical need for adequate ME/CFS research, treatment and provider education. Therefore, we respectfully request a meeting to discuss the concerns raised in this letter and to begin formulating a comprehensive plan to address those concerns. We request your response by August 1, 2012.
For more than 25 years, DHHS has known about the devastating impact of chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis or ME/CFS), a disease that the CDC has said “can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease… and similar chronic conditions.”(1) ME/CFS has obliterated the lives of more than one million Americans. Patients can be sick for decades, often homebound and bedridden and more likely to die prematurely from cancer, heart failure or suicide than those without ME/CFS. (2)
Former CFSAC member Dr. Nancy Klimas stated: “My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.” (3)
Compounding the personal devastation is the effect on the country’s economic well-being. ME/CFS drains our workforce and costs our country an estimated $18 - $23 billion annually. (4)
In spite of all this, virtually nothing has been done, compared to other similar diseases.
The problems are clear: confusion resulting from the definition and name, paltry and misapplied NIH funding, inadequate CDC physician education and an FDA pipeline that has failed to deliver any treatments to address such a serious and life-robbing disease.
We acknowledge some progress has been made. But it has been too little and too slow for many patients who have suffered for decades. To make the progress needed, we require a significant, sustained and coordinated commitment from DHHS to address the following four key priorities:
- Resolve the definition, name and classification confusion (5) (6) (7) (8) (9)
- Provide a fair share of research funding, focused on biological pathologies, biomarkers and treatment (10) (11) (12) (13, 14)
- Educate the medical community (15)
- Accelerate the FDA pipeline for ME/CFS (16)
The specific issues that need to be addressed for each of these priorities are discussed in the Appendix 1. While there are other priorities, these four priorities are the most critical today and have been for the last 25 years.
Many of us have literally lost decades of our lives from this lack of progress. As patients, family and friends of people with ME/CFS, we cannot allow our lives to be destroyed any longer. As a country, we can ill-afford the economic costs.
It is time for the United States government to embrace this disease with the seriousness and vigor that characterized the fight against HIV/AIDS. The Department of Health and Human Services is the one organization positioned to provide the leadership needed to undertake a strategic, coordinated and fully-funded response to the challenge of ME/CFS. We ask you to schedule a meeting between a group of ME/CFS patient representatives and key representatives from across DHHS to discuss the concerns raised in this letter and begin to formulate a comprehensive plan.
Please respond to Mary Dimmock at This email address is being protected from spambots. You need JavaScript enabled to view it. by August 1, 2012 regarding the scheduling of this meeting or if you need additional information.
Signed:
ME/CFS Patient Organizations:
CFS Solutions of West Michigan, CFS Knowledge Center, Inc., CFS/Fibromyalgia Organization of Georgia, Inc., Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago, Coalition 4 ME/CFS, The Connecticut CFIDS & FM Association, Inc., Massachusetts CFIDS/ME & FM Association, Inc., New Jersey CFS Association, Inc., P.A.N.D.O.R.A., Phoenix Rising, Rocky Mountain CFS/ME and FM Association, Speak Up About ME, Vermont CFIDS Association, Inc., Wisconsin ME/CFS Association, Inc.
ME/CFS Patient Advocates:
Lori Chapo-Kroger, R.N., Lily Chu, M.D., MSHS, Laurie DeDecker, R.N., Mary Dimmock, Pat Fero, MEPD, Suzan Jackson, Cort Johnson, Patricia LaRosa, R.N., MSN, Denise Lopez-Majano, Robert Miller, Mike Munoz, Donna Pearson, Mary Schweitzer, Ph.D., Meghan Shannon MS MFT, Rivka Solomon, Jennifer Spotila, J.D.,Nancy Visocki, Toby Vokal, Charlotte von Salis, J.D.
Appendix 1 - Details on Priorities
These four priorities are not new. They have been stated repeatedly in CFSAC deliberations, CFSAC recommendations and public testimony. However, in spite of bright spots, the overall government response to these priorities has been uncoordinated, underfunded, not sustained and too often misdirected.
1. Resolve the definition, name and classification confusion. The 1994 Fukuda definition and the 2005 Empirical definition have hopelessly blurred the distinctions between ME/CFS, depression and generalized chronic fatigue. (6,7). They are out of date and do not require the one symptom considered to be a hallmark of the disease: post exertional malaise. Use of this definition has contributed to research results that cannot be effectively compared across studies (6) and has contributed to inappropriate diagnosis and treatment.
In October 2009, the CFS Advisory Committee (CFSAC) recommended that “DHHS recognize a need for and support a national effort to arrive at a consensus definition of CFS that is accurate, standardized and reflective of the true disease.” (7) We support that recommendation. It is long past time to subset Fukuda-defined patients and actively consider the existing 2003 Canadian Consensus Criteria (CCC) or 2011 International Consensus Criteria (ICC) for those patients who suffer from the hallmark post-exertional malaise.
Beyond the definition, the name CFS has been confused with everyday tiredness and “chronic fatigue” ever since the CDC created it in 1988. Yet, many experienced clinicians and researchers recognize the equivalency or close similarity of ME and CFS based on the growth in scientific understanding and have adopted the term ME/CFS. All of DHHS should follow the NIH’s lead and adopt the term ME/CFS as recommended by the CFSAC in October 2010. (8)
Finally, the current version of the ICD-10-CM classifies CFS as a symptom under “chronic fatigue” even though WHO defines CFS to be a neurological disease, and the CFSAC has been recommending the same since 2004. The Coalition 4 ME/CFS submitted a proposal to NCHS in July 2011 to request CFS be reclassified. To date, NCHS has not made the change, communicated their decision or responded to queries on the status. It is crucial that NCHS ensures that the ICD-10-CM classification of CFS is aligned with WHO’s neurological classification before ICD-10-CM rolls out. (9)
2. Provide a fair share of research funding, focused on biological pathologies, biomarkers and treatment. In 2012, ME/CFS NIH funding at $6M is ranked 220 out of 232 diseases, far below that of other diseases, such as MS ($121M) or lupus ($105M) with a similar level of disability and lower prevalence. Even hay fever gets more at $7M. (10) Worse, some of the limited NIH funding available has instead been spent on grants that ultimately were unrelated to the study of ME/CFS or focused on psychological and other tangential issues. (11)
In May 2011, the CFSAC recommended “ME/CFS research receive funding commensurate with the magnitude of the problem.”(12) We similarly are asking the NIH to provide a fair share of funding commensurate with the devastating personal and economic impact of this disease and direct it specifically toward investigation of the underlying biological pathologies of ME/CFS and to identify the desperately needed biomarkers and treatments that will address those pathologies.
Beyond the level of funding, researchers have stated that the available NIH funding options are too restrictive to fund the needed innovative studies. In addition, the SEP lacks the continuity provided by a standing chairperson and resubmitted proposals can end up with new reviewers who lack context. (13,14) The NIH has stated that not enough proposals are submitted. (14) The lack of new researchers entering the field is a concern. Dr. Nancy Klimas suggested that the NIH could make a substantial leap forward by doing what has been done successfully in other disease areas, that is make “a full-court press effort to draw in people from other fields, encourage K awards, encourage training grants and encourage centers and programs.” (14) We ask the NIH to make such a “full-court press effort” for ME/CFS to address these challenges so the needed funding can get to researchers.
Finally, we are concerned that where ME/CFS is housed may affect the amount of funding, coordination and how the disease is perceived. Given what research is now showing about the disease, the NIAID or the NINDS may prove to be a more appropriate agency, in time. Regardless of where it is housed, we ask for a commitment to appropriate funding, cross-division coordination and an effort to decrease the stigma currently experienced.
3. Educate the medical community. With the exception of a handful of ME/CFS experts across the country, most doctors do not understand ME/CFS or even believe it is a physical condition. Some recommend treatments, such as aerobic physical activity that can cause not only temporary exacerbation of symptoms but prolonged disability. Lacking support from doctors, patients are left to search the Internet.
While the CDC has begun to modify their website and provide updated educational material, it is still based on the outdated Fukuda definition. Much more encouraging is the recently released IACFS/ME ME/CFS Primer for Clinical Practitioners, based on the Canadian Consensus Criteria (15). This primer far surpasses anything available for clinical use. We recommend that the CDC adopt the IACFS/ME primer as its new baseline and collaborate with international ME/CFS experts and patient organizations to refine it over time and to proactively educate the medical community.
4. Accelerate the FDA pipeline for ME/CFS. ME/CFS applications have been shuffled across six different divisions in the FDA (16) and the only drug in the pipeline for ME/CFS has been effectively buried since 1997. Today, patients only have inadequate symptomatic relief. No treatments or biomarkers have come out of the process. A separate letter to Secretary Sebelius and Drs. Hamburg and Woodcock has requested an FDA stakeholder meeting to start to understand the challenges related to drug review and approval and to identify opportunities to accelerate approval. The FDA and ME/CFS stakeholders, including patients, need to work together to find ways to ensure that the process delivers the full complement of drugs and biomarkers needed to effectively diagnosis and treat patients.
Appendix 2 - References
1. CDC Web Site
2. Jason et al, Causes of Death Among Patients With Chronic Fatigue Syndrome. Health Care for Women International, 27; 615-626, 2006
3. Klimas, Dr. Nancy in the New York Times Health Blog http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic- fatigue-syndrome/?_r=0
4. Jason et al, "The Economic Impact of ME/CFS: Individual and societal costs", Dynamic Medicine 2008, 7:6
5. Ranciello, Vincent, “A tale of Two Viruses: Why AIDS was Pinned to HIV, but Chronic Fatigue Remains a Mystery". Discover Magazine, January 2012
6. Multiple references have examined the issues with the definitions. Examples include:
a. Jason et al, “Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome", Journal of Chronic Fatigue Syndrome, Vol 12, 2004
7. CFSAC October 2009 recommendation to address definition issue
8. CFSAC October 2010 recommendation to adopt ME/CFS across HHS
9. CFSAC November 2011 discussion on ICD-10-CM Day 1 and Day 2
10. 2012 NIH funding
11. Pat Fero and Charlotte von Salis, Analysis of use of NIH funding from 2000-2010
a. Pat Fero’s testimony to the CFSAC on this analysis is at hour 1.31 on video. https://www.youtube.com/watch?v=uB8xnB69KaE&feature=youtu.be
12. CFSAC May 2010 recommendations to provide ME/CFS funding commensurate with the problem.
13. May 2011 CFSAC testimony by Lily Chu on need for flexible funding approaches
14. CFSAC NIH discussion on challenges with getting grants - lack of applications, need for other approaches to funding – see page 29-32
15. ME/CFS Primer for Clinical Practitioners, IACFSME, published May, 2011
16. Assignment of Drugs Developed to Treat CFS
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.