Welcome to our Live Chat Event with Dr. Leonard A. Jason, PhD – a clinical & community psychologist, and a prolific ME/CFS researcher.
As head of the Center for Community Research at DePaul University since 2000, Dr. Jason has several different ME/CFS studies going on at any one time. Community-based research is his specialty, with a focus on defining “the true face” of CFS and other ‘controversial’ illnesses.
As a new member of the federal government’s CFS Advisory Committee – and vice president of the science-focused International Association for CFS/ME – Dr. Jason is deeply involved in the debate on research policy, standards of care, and diagnostic criteria. And as a dedicated member of the CFS Name Change Advisory Board, he has strong views on the need for a name change.
Q: Dr. Jason, based on your patient surveys and other research to describe functioning in CFS patients, how ill are people with this illness, Chronic Fatigue Syndrome?
Dr. Jason: Patients with CFS are more functionally impaired than those suffering from type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease.
Q: What are the costs of this illness?
Dr. Jason: Based on data that our group presented at the last IACFS/ME conference in Florida, the total direct and indirect costs due to CFS range from $18.7 billion to $24.0 billion a year.
Q: I assume those are estimated U.S. costs. Can Canadian or European costs be extrapolated?
Dr. Jason: Yes, that is possible, but one would need to figure out the exact population, and then a multiple factor. However, you can clearly see that this is a major cost to our society, and not enough is being done to help the hundreds of thousands who are ill with this illness.
Q: Is it true that a particularly high percentage of patients with ME/CFS have experienced disrespectful treatment by the healthcare system?
Dr. Jason: Research has found that up to 95% of individuals seeking medical treatment for ME/CFS reported feelings of estrangement – and one study found that 66% of individuals with ME/CFS believed that they were made worse by their doctors’ care.
Q: Do you think that health care professionals continue to doubt the scientific validity of this diagnosis?
Dr. Jason: Yes, and the name selected to characterize an illness, such as ‘Chronic Fatigue Syndrome,’ can influence how patients are perceived and ultimately treated by medical personnel, family members, and work associates. Our research has found that the negative stigma associated with CFS may be partially due to the trivializing name that was given to this disorder in 1988.
Q: Several investigators have suggested that the central problem with patients experiencing CFS is a psychosomatic preoccupation with one’s fatigue. What is your view on this?
Dr. Jason: Our work could not find any support for this model, and we have challenged that work in a recently published article.
[See for example “A population-based study of Chronic Fatigue Syndrome experienced in differing patient groups: An effort to replicate Vercoulen et al.’s model of CFS.”]
Q: Is there any medical data that suggests someone with CFS has a greater likelihood of developing cancer and/or some other life-threatening condition?
Dr. Jason: Several studies have now occurred on this critically important issue with different outcomes. I was connected with a study indicating that there were some very serious outcomes and my study is in the literature. However, what is needed are natural course studies of patients over time. That will answer this critical question.
[See for example “Causes of death among patients with Chronic Fatigue Syndrome.” ]
Q: I was in the CFS DePaul Study in 2004. Are there any published research articles on this study yet?
Dr. Jason: We are just sending the papers out to journals, so will have to wait a few more months until they are accepted and published. As you know, if we publicly release findings before publication we can jeopardize the journals’ being willing to publish our articles. But I do think the findings will be of importance to the field. Thank you for helping out our efforts.
Q: What do you think of the new CDC estimates of CFS prevalence? [Increased in 2006 to 4 million people in the U.S. http://www.cdc.gov/cfs/cfsdiagnosis.htm, compared with an estimated 900,000 to 1 million previously.]
Dr. Jason: The crux of the issue has to do with two methods to determine the prevalence rate being used at the same time with a group of individuals in Wichita, Kansas. One traditional method that has been used for the past decade found 16 cases of ME/CFS, and the other, newer, CDC empirical method found 43 cases. The new method has found about 3 times as many cases, and that is the issue that needs to be closely examined. I believe that expanded criteria are the reason for the new CDC estimates of there being 4 million people in the U.S. with this illness.
Q: Do you think that the criteria used by the CDC to determine the prevalence of CFS in their recent Georgia study are better than previous ones, or are they too broad?
[Note: This study “estimated 2.54% of the Georgia population suffers from CFS, which is 6- to 10-fold higher than previous population-based estimates in other areas.”]
Dr. Jason: About 4% of the population has 6 or more months of fatigue, but there are many reasons for this – many of these people do not have ME/CFS. So, the breadth of the criteria will have enormous implications for research and treatment, in my opinion. If most of those 4% are included, I feel that we are broadening the criteria and this will make it more difficult to find biological markers for this illness.
Q: Why all the debate about prevalence rate?
Dr. Jason: For an important reason. Accurate measurement and classification of illnesses such as ME/CFS, FMS, and IBS is imperative when evaluating the diagnostic validity of these controversial illnesses.
Measurement that fails to capture the unique characteristics of these illnesses might inaccurately conclude that only distress and unwellness characterize these illnesses, thus inappropriately supporting a unitary hypothetical construct called “functional somatic syndromes.” In the end, using a broad or narrow definition of ME/CFS will have important influences – on ME/CFS epidemiologic findings, on rates of psychiatric co-morbidity, and ultimately, as I said, on the likelihood of finding biological markers.
Q: Isn’t there a new case definition from Canada?
Dr. Jason: A new ME/CFS clinical case definition was developed in Canada that used the term ‘Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ (ME/CFS) (See Carruthers, et al., 2003). In one of our studies, we found that the Canadian criteria selected patients with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms.
Q: Why won’t the CDC accept the Canadian definition?
Dr. Jason: An excellent question. Right now there has not been too much research on this case definition. However, more research is needed, and once that occurs, we will be able to find a more homogeneous group of patients. You might want to pose this question to the CDC.
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Q: Dr. Jason, have you noticed any one common denominator in adults who develop CFS?
Dr. Jason: If you were to ask that for cancer, you would probably find dozens of reasons that a person might develop it. I believe that there are different types of what we think of as ME/CFS, and subgroups will help us better understand them.
Q: Are you in favor of ‘subtyping’ in CFS research – and if so, how?
Dr. Jason: The identification of clinically significant subgroups is the logical next step in furthering ME/CFS research. There might be multiple pathways leading to the cause and maintenance of the neurobiologic disregulations and other symptoms experienced by individuals with ME/CFS. Depending upon the individual and subtype, these may include unique biological, genetic, neurological, and socioenvironmental contributions.
Subgrouping is the key to understanding how ME/CFS begins, how it is maintained, how medical and psychological variables influence its course, and in the best case, how it can be prevented, treated, and cured. I have a paper on this that was published, and it goes into much more detail.
[See “Exploratory subgrouping in CFS: Infectious, inflammatory, and other” – scroll to page 8.]
Q: What is the status of the campaign to change the name of CFS in the U.S.?
Dr. Jason: Much activity is going on, and you will be hearing more about that in the coming months. There is an effort to try to bring different groups together on this issue, but as you might imagine, it is a challenging task.
Q: In your opinion, what is a better term for CFS – Myalgic Encephalopathy or Myalgic Encephalomyelitis?
Dr. Jason: A very good question. Years ago, I was in favor of the former term, but I am now convinced the latter term is more appropriate, for multiple reasons. Problem is that the scientific community has not supported this version, so I tend to just say “ME/CFS” – and getting folks to even use that acronym is a vast improvement.
Q: Aren’t you concerned that changing the name to “ME/CFS” will dilute the original definition (Ramsay, et al.) of Myalgic Encephalomyelitis and result in even less research into ME?
Dr. Jason: Another very good question. Yes, I am concerned about this, and it is the reason I feel it is so important to be thinking of the ME/CFS Canadian criteria, which try to operationalize a very different way of thinking about diagnosing people with this illness.
Q: Was there a recent name change to the scientific organization for CFS?
Dr. Jason: The organization of researchers – called the International Association of CFS – changed their name to the International Association of CFS/ME – the IACFS/ME. You can find the link to this organization at http://www.aacfs.org/
Q: Didn’t the IACFS/ME recently publish a pediatric case definition of “ME/CFS”?
Dr. Jason: Yes. In the past, kids with this illness were inappropriately diagnosed with an adult case definition. Recently, I served as the chair of an international task force, and published guidelines for a new case definition for children and adolescents – with the name Pediatric ME/CFS. We based our criteria on the work done by those who created the Canadian ME/CFS criteria. [See “A Pediatric Case Definition for ME and CFS” at the IACFS/ME website.]
Q: What is the Chronic Fatigue Syndrome Advisory Committee?
Dr. Jason: The U.S. Department of Health and Human Services assigned this committee (the CFSAC) the task of monitoring CFS activities within the federal government and making recommendations on CFS policy change to the Secretary of the Department of Health and Human Services. I was recently appointed to this committee. I have been asked to chair the Research Sub-Committee as well.
Q: How does CFS research money compare to research money for other serious debilitating illnesses that affect similar numbers of people?
Dr. Jason: I believe that the funding is low – and we need to figure out ways to increase the number of research proposals that get submitted to NIH. We also need to find ways to increase the overall amount of money that is available for ME/CFS research. Efforts are now occurring at NIH to try to encourage a new generation of researchers to get involved. (A CFS Research Funding Opportunity Workshop on this topic is planned for September 17, 2007 in the Washington, DC, area.)
Q: Are big pharmaceutical companies trying to develop medications to treat or cure CFS?
Dr. Jason: Not enough time and effort has been put into this, and we need more of these companies to get involved in testing out literally dozens of promising products.
Q: Dr. Jason, what would you say is the single most important thing for a patient to do or focus on when a really bad flare-up occurs?
Dr. Jason: Several things might be considered. First, one might try to understand why it occurred – and that might then result in the person finding ways of reducing this occurring in the future. As an example, a person might work to reduce over-expenditures of energy, and this might involve getting back into what I call an “energy envelope.” During these difficult times, it is also important to stay connected to people you love, as social support is critical in all phases of this illness.
Q: What type of approach to treating CFS do you support?
Dr. Jason: The Envelope Theory, for example, recommends that patients with ME/CFS pace their activity according to their available energy resources. In this approach, the phrase, “staying within the envelope,” is used to designate a comfortable range of energy expenditure, in which an individual avoids both over-exertion and under-exertion, maintaining an optimal level of activity over time. The Envelope Theory would not endorse recommendations to either unilaterally increase or decrease activity. The key is to not over-expend their energy supplies or consistently go outside their “envelope” of available energy.
Rather than a cure, this approach focuses on improving the ability of patients to cope with this illness, and tailored interventions are needed for the unique needs of different subgroups of patients.
Q: I would like to applaud you on the Flexible Study Program at DePaul University for individuals with CFS, FM, and other chronic illnesses. I truly hope this leads the way for other universities to follow suit. It is long needed.
Dr. Jason: You should thank Lynn Royster, PhD, who has created this program at the School for New Learning, and I would encourage you all to take a look at this wonderful way of extending an education to people who are not able to get to classes in a traditional way.
…And thank you all for such stimulating questions. I hope that I have been able to provide some helpful ideas in the last hour. Closing Chat Remark:
Thank you for giving us your time, Dr. Jason. Please keep up the excellent work!
ProHealth also wishes to thank Dr. Jason – and all the patients, researchers, and advocates who participated so generously in this Live Chat Event. Hopefully the information exchanged here will help advance the work to find a cause and a cure.