ME/CFS -Q&A Dr. Leonard A. Jason, PhD
http://www.immunesupport.com/library/showarticle.cfm/ID/8232
Live Chat Q&A with Chronic Fatigue Syndrome Research and Policy Leader Dr. Leonard A. Jason, PhD
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ImmuneSupport.com
08-14-2007
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.":
http://www.immunesupport.com/library/showarticle.cfm/id/8219 ]
* * * *
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." :
http://www.immunesupport.com/library/showarticle.cfm/ID/8197 ]
* * * *
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 (
http://www.immunesupport.com/library/showarticle.cfm?id=8063 )
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
comorbidity, 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:
http://www.cfids-cab.org/MESA/ccpccd.pdf ). 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.
* * * *
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":
http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%201.pdf
]
* * * *
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: http://www.aacfs.org/p/291.html ]
* * * *
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:
http://www.immunesupport.com/library/showarticle.cfm/id/8198 )
* * * *
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. ( http://www.snl.depaul.edu/current/chronic.asp )
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.
http://www.immunesupport.com/library/showarticle.cfm/ID/8232
Live Chat Q&A with Chronic Fatigue Syndrome Research and Policy Leader Dr. Leonard A. Jason, PhD
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ImmuneSupport.com
08-14-2007
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.":
http://www.immunesupport.com/library/showarticle.cfm/id/8219 ]
* * * *
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." :
http://www.immunesupport.com/library/showarticle.cfm/ID/8197 ]
* * * *
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 (
http://www.immunesupport.com/library/showarticle.cfm?id=8063 )
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
comorbidity, 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:
http://www.cfids-cab.org/MESA/ccpccd.pdf ). 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.
* * * *
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":
http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%201.pdf
]
* * * *
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: http://www.aacfs.org/p/291.html ]
* * * *
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:
http://www.immunesupport.com/library/showarticle.cfm/id/8198 )
* * * *
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. ( http://www.snl.depaul.edu/current/chronic.asp )
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.
No comments:
Post a Comment