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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hear More on Tuesday about NIH study during CDC’s Grand Rounds
- Thread starter Dolphin
- Start date
searcher
Senior Member
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- 567
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- SF Bay Area
Hi @Justin30- I am involved with #MEAction. Our goal is to be a one-stop shop for worldwide advocacy, including news, discussion, and actions (like petitions to sign). Please let me know if you have any questions.
You can see all the petitions on the site at http://my.meaction.net/categories, including a petition asking the US government to investigate PACE and update their guidelines: http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace and the original PACE petition with almost 12K signatures is at: http://my.meaction.net/petitions/pace-trial-needs-review-now
http://my.meaction.net/petitions/pace-trial-needs-review-now
There are also discussion groups about topics such as creating a national research plan and planning direct actions (such as demonstrations) at http://my.meaction.net
You can see all the petitions on the site at http://my.meaction.net/categories, including a petition asking the US government to investigate PACE and update their guidelines: http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace and the original PACE petition with almost 12K signatures is at: http://my.meaction.net/petitions/pace-trial-needs-review-now
http://my.meaction.net/petitions/pace-trial-needs-review-now
There are also discussion groups about topics such as creating a national research plan and planning direct actions (such as demonstrations) at http://my.meaction.net
Last edited:
Hi Justin - to be sure to get someone's attention, it's best to tag them. You do that by putting an '@' in in front of their username and they get flagged. So if I write @Justin30, you'll see a red tag that contains a link to this message.
You can still sign the original PACE petition (the campaign to push it is over but you can still sign) and there's another important PACE petition that you might like to sign.
I don't think it would be good to advertise advocacy or petition stuff by flooding all sections of the forum with it, because duplicate posts tend to annoy people, and there's no need. We have advocacy and petition sections where you can find this stuff, and if you use the 'New Posts' button (in the top menu bar) you see every new post as it comes up, across the whole forum.
Also, if you're interested in advocacy, I recommend signing up to #MEAction's newsletter, which gives you daily updates on what's going on. Phoenix Rising is run by a handful of volunteers who are very limited in what they can do beyond running the forums.
mango
Senior Member
- Messages
- 905
Here’s a transcript of Unger’s presentation.
(Warning: there might be lots of mistakes, English is not my first language…)
"Elizabeth Unger: The public health approach to Chronic Fatigue Syndrome
17:37 When designing a public health approach to illness, one of the first steps is to understand the epidemiology of the condition. For CFS answering this question is difficult because there's no simple test to make the diagnosis, and findings will differ depending on how the patients are identified, for example self-report compared with clinical assessment, as well as where the study is conducted, for example in clinics compared with the population as a whole. Population based studies that include clinical assessments are generally considered to give the most accurate estimates, but these are complex and expensive.
Extrapolating estimates from the three US population based surveys to the country as a whole we can estimate that at least one million americans suffer from CFS. Most patients identified in the population surveys have been ill longer than five years, and only about half of those affected continue to seek medical care. In addition, only about 20% of those identified as CFS have been actually diagnosed by a physician. This emphasizes the need for more physician education about this illness.
These studies indicate that CFS is three to four more times common in women than in men. Persons of all race and ethnic backgrounds are affected, and there's a disproportionate burden of CFS in minority and socio-economically disadvantaged groups. The highest prevalence of illness is in 40-50 year olds but the age range is broad and includes children and adolescents.
It's important to understand the economic impact of the illness, and barriers to health care utilisation. Patients, their family and society all bear significant costs associated with CFS. These include direct medical costs of provider visits and medications, and indirect costs of lost productivity. In the US the estimated annual direct medical cost is between 9 and 14 billion dollars, and nearly one quarter of these expenses are paid directly by the patient and their family. The estimated annual cost of lost productivity is between 9 and 37 billion dollars.
When CFS occurs before age 25 the ability of patients to complete their education is significantly impaired. Inability to achieve their full education potential can have a life-long impact on earning potential.
CFS patients face significant barriers to receiving appropriate health care. A population based study in Georgia found that 55% of persons with CFS reported at least one barrier to health care. Finances prevented 10% from seeking care. This is twofold higher than the population average found in the 2005 national health interview survey.
While the cause or causes of CFS are not known, studies have identified some factors that are associated with the illness. Risk factors may suggest avenues to explore to discover causes or to develop interventions.
Infections have been linked to CFS because patients often report an acute onset after a flu-like illness that does not go away, and some patients have a history of frequent infections prior to their illness. Epidemiologic studies do not support any association with any single pathogen.
Post-infectious fatigue, that is failure to recover from a documented infection occurs in about 10% of patients with a variety of viral and non-viral pathogens, such as Epstein-Barr virus, Ross River virus, Q-fever, that is Coxiella burnetii, or giardia.
The severity of the acute infection is most predictive of subsequent illness and there's no evidence of an unusual persistence of infection in those who remain ill.
Compared to healthy controls, persons with CFS have had exposure to significantly more stressors and are more likely to have a higher allostatic load, that is a measure of the physiologic consequences of chronic neuroendocrine response to stress. They're also more likely to have metabolic syndrome. These associations are unlikely to be specific to CFS as stress is a factor in many chronic illnesses.
21:55 Twin and family studies support the contribution of both genetic and environmental factors in CFS. Non specific genes have been identified and a polygenetic explanation for increased susceptibility and most likely.
CDC recently shifted its focus from population based studies to studying CFS patients being cared for by clinicians with specialized expertise in CFS. Population based surveys are helpful to identify the full spectrum of those affected and include a broad range of illness severity. Patients identified from clinics tend to have more severe illness.
Most studies of CFS have been conducted in patients enrolled from single clinics and include small numbers of patients. Many intriguing findings have not been replicated, leading to the suggestion that heterogeneity of patients may contribute to this difficulty.
Our study is designed to document a comprehensive picture of CFS patients identified in multiple clinics, and to describe the approach that experts use to diagnose and manage their patients. We use standardized questionnaires to measure the major domains or characteristics of the illness. These questionnaires measure the level of function, pain, fatigue, type and severity of symptoms, and sleep. We also collected medical history, family history, physical examination results, medications and results of laboratory tests.
We included the PROMIS instruments that were designed and validated by NIH to measure symptoms experienced in many different illnesses, to allow comparison between illnesses. The SF-36 measures of function and multi-dimension fatigue inventory have also been widely used in a variety of conditions.
23:43 Seven clinical sites have participated in this study that was initiated in 2011. Five participate under the umbrella organization of The Open Medicine Institute Consortium. The clinicians participating are all well known respected experts in CFS and include one of our speakers today, dr Lapp. Their expertise is what gives credibility to this study. We are very grateful to their patients who have agreed to be part of this study, and have accepted the additional burden of completing the many questionnaires required.
We collected complete data on 471 patients in the baseline study. These were distributed fairly evenly across the clinics. The mean patient age was 48.2 years and the mean duration of illness was 14.3 years. Most patients were female and the vast majority were white. The mean BMI was 26.6. More than three fourths of the patients had a college education and nearly all were insured. While about three fourths were unemployed, only 14% were receiving unemployment benefits. There were statistical differences in the demographics between all the clinics in these measures, except the proportion not working.
The patients in these specialty clinics may not be representative of CFS patients in other health care settings as they were all highly educated and with sufficient socio-economic support to be able to navigate their way to these specialized centers. Most patients had been seen and evaluated by more than one physician prior to coming to coming to their clinic.
We found significant heterogeneity in the patients overall, but there were very few differences between clinics in these average measures. This is illustrated here for functional status, as measured by the eight sub-scales of the well validated instrument SF-36. The box plot shows the full range of values. The top and bottom of the box is the 75th and 25th percentile. The bar in the middle is the median, and the small diamond is the mean. While you can see there is significant heterogeneity in these measures overall, there's no significant difference between the clinics. In this scale higher scores indicate better functioning.
If we compare these values to healthy controls, the red bars indicate the mean of the 213 healthy controls we enrolled, and these values compare well with other studies.
The important feature to note is that the patients show significant functional impairment. Particularly for vitality and physical functioning, but there is relative preservation of mental health and role emotional.
The data in our study confirms the seriousness of this illness and the extent of impairment experienced by patients with CFS. We are continuing this study to collect longitudinal measures of illness characteristics and to enroll groups of patients that have been understudied, specificially pediatrics, severely ill or homebound patients, and patients within two years of onset of the illness.
We are also enrolling healthy controls and ill comparison groups who may present similarly to CFS. In addition we are collecting blood and saliva on those enrolled so that they can be tested for biomarkers that have shown promise in smaller studies.
27:19 Results from this study will help to find patient subgroups that reflect different causes or they could suggest targeted therapies.
Finally, the data clearly show that the patients in these speciality clinics are highly educated with significant financial and social support that enable them to reach these expert physicians. Again, this emphasises the need for dissemination of knowledge about CFS to the broader medical community.
It is clear that despite decades of work CFS remains a challenge for clinicians. Patients have difficulty finding compassionate and appropriate care. Physicians and other health care workers need evidence based information about CFS. CDC has responded to this need by developing a series of continuing medical education courses. In 2012 and 2014 we partnered with Medscape to present two roundtable discussions that were targeted to primary care physicians. These reach more than 22 000 phycisians and more than 6000 continuing medical education credits were issued.
Currently CDC has two free online courses available on the CFS website. These are accredited for both physicians, nurses and other health care professionals.
However, CFS is rarely covered in medical schools and this leaves a vacuum of knowledge so we've begun a process of developing standardized patient videos accompanied by educational curriculum for the MedEdPORTAL. This is a free online service provided by the Association of American Medical Colleges. The materials are peer-reviewed and once approved they're made available to medical school faculty free of charge.
28:59 Finally, CDC is continuing communication with the general public and advocacy community. An important part of this has been the introduction of patient centered outreach and communication calls, PCOCA calls. These are one hour teleconferences that are available toll free in the US. They began in 2012 and are generally held twice a year. The format is that CDC uses the first 10 minutes to give an update on current activities of the CFS program, and then an outside expert or group of experts presents information on a topic of interest to the community. These talks generally last 35-40 minutes and are followed by answers to questions submitted to the PCOCA email. Topics have included identifying patients for clinical studies, exercise, infection and immunity in CFS, CFS and cognitive function, sleep research in CFS, Stanford's research program, and self-management strategies in CFS. We are grateful to all the experts who graciously gave up their time to share their insights with the patients and their families.
Most recently we've begun a new initiative to include broad stakeholder collaboration into developing educational material. Including the viewpoints of patients, medical professional organizations, medical educational organizations, expert clinicians and government agencies will help assure the quality and usefulness of these products and help facilitate broader dissemination in the medical community at large.
Our first focus will be modification of the CDC CFS webpage to incorporate recommendations of the Institute of Medicine.
I'd now like to turn the podium over to dr Komaroff, who will talk to us about those initiatives."
(Warning: there might be lots of mistakes, English is not my first language…)
"Elizabeth Unger: The public health approach to Chronic Fatigue Syndrome
17:37 When designing a public health approach to illness, one of the first steps is to understand the epidemiology of the condition. For CFS answering this question is difficult because there's no simple test to make the diagnosis, and findings will differ depending on how the patients are identified, for example self-report compared with clinical assessment, as well as where the study is conducted, for example in clinics compared with the population as a whole. Population based studies that include clinical assessments are generally considered to give the most accurate estimates, but these are complex and expensive.
Extrapolating estimates from the three US population based surveys to the country as a whole we can estimate that at least one million americans suffer from CFS. Most patients identified in the population surveys have been ill longer than five years, and only about half of those affected continue to seek medical care. In addition, only about 20% of those identified as CFS have been actually diagnosed by a physician. This emphasizes the need for more physician education about this illness.
These studies indicate that CFS is three to four more times common in women than in men. Persons of all race and ethnic backgrounds are affected, and there's a disproportionate burden of CFS in minority and socio-economically disadvantaged groups. The highest prevalence of illness is in 40-50 year olds but the age range is broad and includes children and adolescents.
It's important to understand the economic impact of the illness, and barriers to health care utilisation. Patients, their family and society all bear significant costs associated with CFS. These include direct medical costs of provider visits and medications, and indirect costs of lost productivity. In the US the estimated annual direct medical cost is between 9 and 14 billion dollars, and nearly one quarter of these expenses are paid directly by the patient and their family. The estimated annual cost of lost productivity is between 9 and 37 billion dollars.
When CFS occurs before age 25 the ability of patients to complete their education is significantly impaired. Inability to achieve their full education potential can have a life-long impact on earning potential.
CFS patients face significant barriers to receiving appropriate health care. A population based study in Georgia found that 55% of persons with CFS reported at least one barrier to health care. Finances prevented 10% from seeking care. This is twofold higher than the population average found in the 2005 national health interview survey.
While the cause or causes of CFS are not known, studies have identified some factors that are associated with the illness. Risk factors may suggest avenues to explore to discover causes or to develop interventions.
Infections have been linked to CFS because patients often report an acute onset after a flu-like illness that does not go away, and some patients have a history of frequent infections prior to their illness. Epidemiologic studies do not support any association with any single pathogen.
Post-infectious fatigue, that is failure to recover from a documented infection occurs in about 10% of patients with a variety of viral and non-viral pathogens, such as Epstein-Barr virus, Ross River virus, Q-fever, that is Coxiella burnetii, or giardia.
The severity of the acute infection is most predictive of subsequent illness and there's no evidence of an unusual persistence of infection in those who remain ill.
Compared to healthy controls, persons with CFS have had exposure to significantly more stressors and are more likely to have a higher allostatic load, that is a measure of the physiologic consequences of chronic neuroendocrine response to stress. They're also more likely to have metabolic syndrome. These associations are unlikely to be specific to CFS as stress is a factor in many chronic illnesses.
21:55 Twin and family studies support the contribution of both genetic and environmental factors in CFS. Non specific genes have been identified and a polygenetic explanation for increased susceptibility and most likely.
CDC recently shifted its focus from population based studies to studying CFS patients being cared for by clinicians with specialized expertise in CFS. Population based surveys are helpful to identify the full spectrum of those affected and include a broad range of illness severity. Patients identified from clinics tend to have more severe illness.
Most studies of CFS have been conducted in patients enrolled from single clinics and include small numbers of patients. Many intriguing findings have not been replicated, leading to the suggestion that heterogeneity of patients may contribute to this difficulty.
Our study is designed to document a comprehensive picture of CFS patients identified in multiple clinics, and to describe the approach that experts use to diagnose and manage their patients. We use standardized questionnaires to measure the major domains or characteristics of the illness. These questionnaires measure the level of function, pain, fatigue, type and severity of symptoms, and sleep. We also collected medical history, family history, physical examination results, medications and results of laboratory tests.
We included the PROMIS instruments that were designed and validated by NIH to measure symptoms experienced in many different illnesses, to allow comparison between illnesses. The SF-36 measures of function and multi-dimension fatigue inventory have also been widely used in a variety of conditions.
23:43 Seven clinical sites have participated in this study that was initiated in 2011. Five participate under the umbrella organization of The Open Medicine Institute Consortium. The clinicians participating are all well known respected experts in CFS and include one of our speakers today, dr Lapp. Their expertise is what gives credibility to this study. We are very grateful to their patients who have agreed to be part of this study, and have accepted the additional burden of completing the many questionnaires required.
We collected complete data on 471 patients in the baseline study. These were distributed fairly evenly across the clinics. The mean patient age was 48.2 years and the mean duration of illness was 14.3 years. Most patients were female and the vast majority were white. The mean BMI was 26.6. More than three fourths of the patients had a college education and nearly all were insured. While about three fourths were unemployed, only 14% were receiving unemployment benefits. There were statistical differences in the demographics between all the clinics in these measures, except the proportion not working.
The patients in these specialty clinics may not be representative of CFS patients in other health care settings as they were all highly educated and with sufficient socio-economic support to be able to navigate their way to these specialized centers. Most patients had been seen and evaluated by more than one physician prior to coming to coming to their clinic.
We found significant heterogeneity in the patients overall, but there were very few differences between clinics in these average measures. This is illustrated here for functional status, as measured by the eight sub-scales of the well validated instrument SF-36. The box plot shows the full range of values. The top and bottom of the box is the 75th and 25th percentile. The bar in the middle is the median, and the small diamond is the mean. While you can see there is significant heterogeneity in these measures overall, there's no significant difference between the clinics. In this scale higher scores indicate better functioning.
If we compare these values to healthy controls, the red bars indicate the mean of the 213 healthy controls we enrolled, and these values compare well with other studies.
The important feature to note is that the patients show significant functional impairment. Particularly for vitality and physical functioning, but there is relative preservation of mental health and role emotional.
The data in our study confirms the seriousness of this illness and the extent of impairment experienced by patients with CFS. We are continuing this study to collect longitudinal measures of illness characteristics and to enroll groups of patients that have been understudied, specificially pediatrics, severely ill or homebound patients, and patients within two years of onset of the illness.
We are also enrolling healthy controls and ill comparison groups who may present similarly to CFS. In addition we are collecting blood and saliva on those enrolled so that they can be tested for biomarkers that have shown promise in smaller studies.
27:19 Results from this study will help to find patient subgroups that reflect different causes or they could suggest targeted therapies.
Finally, the data clearly show that the patients in these speciality clinics are highly educated with significant financial and social support that enable them to reach these expert physicians. Again, this emphasises the need for dissemination of knowledge about CFS to the broader medical community.
It is clear that despite decades of work CFS remains a challenge for clinicians. Patients have difficulty finding compassionate and appropriate care. Physicians and other health care workers need evidence based information about CFS. CDC has responded to this need by developing a series of continuing medical education courses. In 2012 and 2014 we partnered with Medscape to present two roundtable discussions that were targeted to primary care physicians. These reach more than 22 000 phycisians and more than 6000 continuing medical education credits were issued.
Currently CDC has two free online courses available on the CFS website. These are accredited for both physicians, nurses and other health care professionals.
However, CFS is rarely covered in medical schools and this leaves a vacuum of knowledge so we've begun a process of developing standardized patient videos accompanied by educational curriculum for the MedEdPORTAL. This is a free online service provided by the Association of American Medical Colleges. The materials are peer-reviewed and once approved they're made available to medical school faculty free of charge.
28:59 Finally, CDC is continuing communication with the general public and advocacy community. An important part of this has been the introduction of patient centered outreach and communication calls, PCOCA calls. These are one hour teleconferences that are available toll free in the US. They began in 2012 and are generally held twice a year. The format is that CDC uses the first 10 minutes to give an update on current activities of the CFS program, and then an outside expert or group of experts presents information on a topic of interest to the community. These talks generally last 35-40 minutes and are followed by answers to questions submitted to the PCOCA email. Topics have included identifying patients for clinical studies, exercise, infection and immunity in CFS, CFS and cognitive function, sleep research in CFS, Stanford's research program, and self-management strategies in CFS. We are grateful to all the experts who graciously gave up their time to share their insights with the patients and their families.
Most recently we've begun a new initiative to include broad stakeholder collaboration into developing educational material. Including the viewpoints of patients, medical professional organizations, medical educational organizations, expert clinicians and government agencies will help assure the quality and usefulness of these products and help facilitate broader dissemination in the medical community at large.
Our first focus will be modification of the CDC CFS webpage to incorporate recommendations of the Institute of Medicine.
I'd now like to turn the podium over to dr Komaroff, who will talk to us about those initiatives."
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
Thank you, mango. Very helpful
(I didn't spot any mistakes!)Both videos (the Grand Rounds and the Beyond the Data videos) are now on the CDC Grand Rounds site
http://www.cdc.gov/cdcgrandrounds/archives/2016/february2016.htm
(edit to add - in the video box it seems to indicate there is a pdf but when I tried to access it, it just led to the same Grand Rounds page)
http://www.cdc.gov/cdcgrandrounds/archives/2016/february2016.htm
(edit to add - in the video box it seems to indicate there is a pdf but when I tried to access it, it just led to the same Grand Rounds page)
Here's a transcript of Dr. Lapp's presentation at the Grand Rounds on February 16
4:25> Let me start by saying that in 1991, one of my colleagues, David Bell, wrote a book entitled the disease of a thousand names. And that title sort of exemplifies the confusion we have had about this illness. The signs and the symptoms are so general and diverse that chronic fatigue syndrome mimics many other disorders.
And has earned numerous monikers over the years: Royal Free Disease, Iceland Disease, Tapanui Flu, “Yuppie Flu”, by the way that came form the eminent medical journal Rolling Stone Magazine. Its also been called Myalgic encephalopathy (note the slide said encephalomyelophathy), chronic fatigue immune dysfunction syndrome, and more recently SEID which stands for systemic exertion intolerance disease.
For this presentation however, we will be using the more common which was chosen because 100% of the study subjects experienced an unusually severe and persistent type of fatigue.
Now there’s no explanation why individuals contract chronic fatigue syndrome but we do know that the majority of cases occur acutely over hours to days and typically follow a bacterial or viral type illness.
NOTE this next section had a picture of a woman laying down on a laptop that is covered with stickies.
5:55> So let me introduce you to a typical clinical case. And this is an actual case from my practice. Jane was a 37-year-old internet technologist with a community bank. She had been physically active in sports and working out and had been maintaining her own household when she contracted a flu-like illness in 2011. She was bedbound at first and very slow to recover. Within days she noticed an unusual fatigue after minimal activity then insomnia, then achiness of the joints and generalized muscle pain and weakness. She soon found it difficult to recall recent conversations and events.
Reading concentration was limited and she had trouble comprehending what she had read or even TV shows that she had watched. She would search for words, loose her train of thought and friends would sometimes have to finish sentences for her. Sleep had always been good but now she was restless at night and she would awaken unrefreshed even after many hours of bedrest. She got stiff and sore and foggy for an hour or two after the awakening. She noticed dizziness or lightheadedness on getting up quickly and on a couple of occasions, she saw stars but no tunnel vision, no syncope.
Now she was unable to keep up the house and she had to rely on friends and family to help her with the cleaning, the laundry, and the shopping. She would attempt to keep up at home and at work but exertion would inevitably make the symptoms worse and if she exerted too much, she would end up sick and chair bound for one or two days afterward.
Evaluation by her primary care physician revealed rather low blood pressure but there was no immediate orthostatic blood pressure drop and otherwise the examination was unremarkable. Blood work was unremarkable. Having no explanation for her symptoms despite the profound reduction in her physical abilities, Jane became anxious about her future and frustrated and discouraged as well.
8:00> So our clinical case demonstrates all the key features of chronic fatigue syndrome
· Exertion intolerance and debilitating fatigue
· Post-exertional relapse and malaise
· New onset of sleep problems
· Cognitive difficulties
· Orthostatic intolerance (slide listed dizziness, lightheadedness upon standing up)
· Symptoms wax and wane
· Whole body flu-llike myalgias, arthralgias, or widespread body pain
8:29> Now the cause of exertion intolerance, pain, sleep disruption, cognitive dysfunction and other cfs symptoms is unknown. But there is an identifiable trigger in a majority of cases that we see. A large majority of patients report a precipitating factor hours to days before their symptoms begin. The largest category is preceding infections although a variety of other medical and surgical events can occur before the onset of CFS. CFS is triggered by viral or bacterial infection in about 75% of cases that we see and non-infectious trauma, surgery or trauma, allergic reactions, stress or emotional trauma occur in much smaller numbers.
There’s some evidence that high levels of concurrent stress may contribute to the precipitation of chronic fatigue syndrome. Now the typical course is a roller coaster ride of flares alternating with relative improvement while overexertion, sleep deprivation and emotional stress are well-known to trigger the flares, many relapses occur spontaneously and they last for an indefinite period of time.
The unpredictable onset and the severity of such relapses make it difficult for a person with CFS to plan ahead or to function on a regular, predictable or sustained basis. Clinical management contributes to some functional improvement but total recovery is uncommon and most adults do not return to their pre-illness level of function.
10:05> Now individuals with cfs are more likely than the general population to suffer comorbidities such as fibromyalgia, irritable bowel and bladder, sjogren’s syndrome, joint hyperextensibility or Ehlers-Danlos syndrome and several other medical conditions. Sadly however, its an invisible illness and to the causal observer, patients appear entirely normal and healthy. But the gravity of the disease is such that it totally changes one’s lifestyle and the lives around that patient as well. One of my patients pointed out to me and I make this a quote “ this illness can take away everything, your dignity, your livelihood, your family, your marriage and even all of your money.
11:00> So as you can imagine, the symptoms of chronic fatigue syndrome overlap with many disorders including depression, MS, systemic Lupus, endocrine disorders, hepatitis and many other illnesses. So in order to confirm a diagnosis of chronic fatigue syndrome, one needs to exclude disorders that could plausibly explain the exertion intolerance and the other symptoms.
The essentials of evaluation include as you see here a thorough medical history, a thorough psychosocial history (such as a history of dysfunctional childhood, prior verbal or physical abuse, substance abuse), a complete physical examination, a mental health examination perhaps using validated screening such as the HADS (Hospital Anxiety and Depressiion Scale or the Patient Health Questionairre (PHQ8). Such an evaluation typically takes about 30-60 minutes in my office.
Lastly its recommended to obtain basic screening laboratory tests. They may include a CBC with a white blood cell differential, blood chemistries such as a comprehensive metabolic panel, thyroid function tests such as the TSH and the free T4, a sedimentation rate and/or a CRP which of course are markers of inflammation and a routine urinalysis. Now sometimes additional labwork is obtained if clinically indicated of course to rule out other possible causes of fatigue such as infection, authoimmune disorders, endocrine or ?? problems, celiac disease, etc. The results of such testing is usually unremarkable but it does help rule out those other conditions that could plausibly explain the fatigue and the other symptoms.
12:45> Dr. Komaroff will soon be explaining the institute of medicine recommendations. But suffice it to say at this point that the IOM recommends making the diagnosis actively and that means its important to make the diagnosis promptly even before one excludes other plausible causes.
The IOM criteria for systemic exertion intolerance disease or SEID provides a brief and simple method for diagnosing CFS but many clinicians including myself corroborate the diagnosis with established instruments such as the Fukuda Criteria of 1994 or the Canadian Consensus Criteria. Making the diagnosis promptly reduces anxiety and uncertainty for the patient and reduces medical costs because numerous exclusionary lab studies and procedures would not be needed.
13:39> So let’s consider the prognosis for these patients. In a systemic review of the natural course of CFS, a median of 39.5% of adults with CFS improved and a median of 5% experienced complete recovery. The likelihood of recovery decreases with baseline level of severity, the duration of the illness, and the presence of comorbid psychiatric conditions. Children and adolescents fare somewhat better with one paper reporting 60% recovery at 5 years and 88% at 12 years after the onset of their illness. In another longitudinal study of 25 adolescents with CFS compared to 25 healthy controls, 80% of the patients had remitted over 25 years but many of the patients reported more impairment than the controls.
14:35> Now the management of chronic fatigue syndrome can be briefly summed up by these four pillars if you will: Education, Behavioral change, medication and non-medication based treatment. First, reliable education material should be provided to the patient and an excellent source is online at the CDC website: CDC.gov/CFS. Behavioral modification has been effective to limit depression, anxiety and abnormal coping mechanisms such as denial and escape avoidance.
Pharmacologically, sleep disruption and pain are usually addressed first and may require consultation with a sleep specialist or a pain management group. We usually avoid narcotic pain medication but helpful therapies include tricyclics such as amitriptyline and cyclobenzaprine, the NSRI (sp?) such as duloxetine and nolnasapren (sp?) and antiepileptic medications like pregabalin. The next step in management is to address severe symptoms and to address those comorbidities that the patients suffer. Non-pharmacological therapy might include Epsom soaks, hot or cold packs, liniments, massage, osteopathic manipulation, acupuncture and the like.
16:00> Another form of non-pharmacological therapy is staying active but not too active. We recommend starting with very low levels of activity and proceeding slowly. Brief intervals of activity should be followed by adequate rest in order to avoid a flare of symptoms or to avoid the post-exertional malaise. Consider beginning with active stretching and range of motion exercises against gravity and then follow with light resistance training with light weights for example or elastic bands.
We then advance to certain types of aerobic activity such as tai-chi, yoga, walking, bicycling or aqua therapy. To avoid flares, patients should limit activity by time, say 5 minutes per day to start and limit the number of repetitions. If they experience any excessive fatigue, reduce the amount of time or the number of repetitions.
· NOTE the reference for this section is
· http://www.cdc.gov/cfs/management/managing-activities.html
· The Seventh Annual AACFS International Conference 2004, Madison, Wisconsin
17:00> So the summary from the clinical aspect is that we can find chronic fatigue syndrome present in both pediatric and adult groups, it typically has a preceding medical event, often infection, patients benefit from earlier, comprehensive evaluation and diagnosis, the disease can have severe impact on quality of life but improvement and recovery are certainly possible and there’s no curative therapy but graded exercise and some kinds of pharmacological therapy can be of great benefit.
4:25> Let me start by saying that in 1991, one of my colleagues, David Bell, wrote a book entitled the disease of a thousand names. And that title sort of exemplifies the confusion we have had about this illness. The signs and the symptoms are so general and diverse that chronic fatigue syndrome mimics many other disorders.
And has earned numerous monikers over the years: Royal Free Disease, Iceland Disease, Tapanui Flu, “Yuppie Flu”, by the way that came form the eminent medical journal Rolling Stone Magazine. Its also been called Myalgic encephalopathy (note the slide said encephalomyelophathy), chronic fatigue immune dysfunction syndrome, and more recently SEID which stands for systemic exertion intolerance disease.
For this presentation however, we will be using the more common which was chosen because 100% of the study subjects experienced an unusually severe and persistent type of fatigue.
Now there’s no explanation why individuals contract chronic fatigue syndrome but we do know that the majority of cases occur acutely over hours to days and typically follow a bacterial or viral type illness.
NOTE this next section had a picture of a woman laying down on a laptop that is covered with stickies.
5:55> So let me introduce you to a typical clinical case. And this is an actual case from my practice. Jane was a 37-year-old internet technologist with a community bank. She had been physically active in sports and working out and had been maintaining her own household when she contracted a flu-like illness in 2011. She was bedbound at first and very slow to recover. Within days she noticed an unusual fatigue after minimal activity then insomnia, then achiness of the joints and generalized muscle pain and weakness. She soon found it difficult to recall recent conversations and events.
Reading concentration was limited and she had trouble comprehending what she had read or even TV shows that she had watched. She would search for words, loose her train of thought and friends would sometimes have to finish sentences for her. Sleep had always been good but now she was restless at night and she would awaken unrefreshed even after many hours of bedrest. She got stiff and sore and foggy for an hour or two after the awakening. She noticed dizziness or lightheadedness on getting up quickly and on a couple of occasions, she saw stars but no tunnel vision, no syncope.
Now she was unable to keep up the house and she had to rely on friends and family to help her with the cleaning, the laundry, and the shopping. She would attempt to keep up at home and at work but exertion would inevitably make the symptoms worse and if she exerted too much, she would end up sick and chair bound for one or two days afterward.
Evaluation by her primary care physician revealed rather low blood pressure but there was no immediate orthostatic blood pressure drop and otherwise the examination was unremarkable. Blood work was unremarkable. Having no explanation for her symptoms despite the profound reduction in her physical abilities, Jane became anxious about her future and frustrated and discouraged as well.
8:00> So our clinical case demonstrates all the key features of chronic fatigue syndrome
· Exertion intolerance and debilitating fatigue
· Post-exertional relapse and malaise
· New onset of sleep problems
· Cognitive difficulties
· Orthostatic intolerance (slide listed dizziness, lightheadedness upon standing up)
· Symptoms wax and wane
· Whole body flu-llike myalgias, arthralgias, or widespread body pain
8:29> Now the cause of exertion intolerance, pain, sleep disruption, cognitive dysfunction and other cfs symptoms is unknown. But there is an identifiable trigger in a majority of cases that we see. A large majority of patients report a precipitating factor hours to days before their symptoms begin. The largest category is preceding infections although a variety of other medical and surgical events can occur before the onset of CFS. CFS is triggered by viral or bacterial infection in about 75% of cases that we see and non-infectious trauma, surgery or trauma, allergic reactions, stress or emotional trauma occur in much smaller numbers.
There’s some evidence that high levels of concurrent stress may contribute to the precipitation of chronic fatigue syndrome. Now the typical course is a roller coaster ride of flares alternating with relative improvement while overexertion, sleep deprivation and emotional stress are well-known to trigger the flares, many relapses occur spontaneously and they last for an indefinite period of time.
The unpredictable onset and the severity of such relapses make it difficult for a person with CFS to plan ahead or to function on a regular, predictable or sustained basis. Clinical management contributes to some functional improvement but total recovery is uncommon and most adults do not return to their pre-illness level of function.
10:05> Now individuals with cfs are more likely than the general population to suffer comorbidities such as fibromyalgia, irritable bowel and bladder, sjogren’s syndrome, joint hyperextensibility or Ehlers-Danlos syndrome and several other medical conditions. Sadly however, its an invisible illness and to the causal observer, patients appear entirely normal and healthy. But the gravity of the disease is such that it totally changes one’s lifestyle and the lives around that patient as well. One of my patients pointed out to me and I make this a quote “ this illness can take away everything, your dignity, your livelihood, your family, your marriage and even all of your money.
11:00> So as you can imagine, the symptoms of chronic fatigue syndrome overlap with many disorders including depression, MS, systemic Lupus, endocrine disorders, hepatitis and many other illnesses. So in order to confirm a diagnosis of chronic fatigue syndrome, one needs to exclude disorders that could plausibly explain the exertion intolerance and the other symptoms.
The essentials of evaluation include as you see here a thorough medical history, a thorough psychosocial history (such as a history of dysfunctional childhood, prior verbal or physical abuse, substance abuse), a complete physical examination, a mental health examination perhaps using validated screening such as the HADS (Hospital Anxiety and Depressiion Scale or the Patient Health Questionairre (PHQ8). Such an evaluation typically takes about 30-60 minutes in my office.
Lastly its recommended to obtain basic screening laboratory tests. They may include a CBC with a white blood cell differential, blood chemistries such as a comprehensive metabolic panel, thyroid function tests such as the TSH and the free T4, a sedimentation rate and/or a CRP which of course are markers of inflammation and a routine urinalysis. Now sometimes additional labwork is obtained if clinically indicated of course to rule out other possible causes of fatigue such as infection, authoimmune disorders, endocrine or ?? problems, celiac disease, etc. The results of such testing is usually unremarkable but it does help rule out those other conditions that could plausibly explain the fatigue and the other symptoms.
12:45> Dr. Komaroff will soon be explaining the institute of medicine recommendations. But suffice it to say at this point that the IOM recommends making the diagnosis actively and that means its important to make the diagnosis promptly even before one excludes other plausible causes.
The IOM criteria for systemic exertion intolerance disease or SEID provides a brief and simple method for diagnosing CFS but many clinicians including myself corroborate the diagnosis with established instruments such as the Fukuda Criteria of 1994 or the Canadian Consensus Criteria. Making the diagnosis promptly reduces anxiety and uncertainty for the patient and reduces medical costs because numerous exclusionary lab studies and procedures would not be needed.
13:39> So let’s consider the prognosis for these patients. In a systemic review of the natural course of CFS, a median of 39.5% of adults with CFS improved and a median of 5% experienced complete recovery. The likelihood of recovery decreases with baseline level of severity, the duration of the illness, and the presence of comorbid psychiatric conditions. Children and adolescents fare somewhat better with one paper reporting 60% recovery at 5 years and 88% at 12 years after the onset of their illness. In another longitudinal study of 25 adolescents with CFS compared to 25 healthy controls, 80% of the patients had remitted over 25 years but many of the patients reported more impairment than the controls.
14:35> Now the management of chronic fatigue syndrome can be briefly summed up by these four pillars if you will: Education, Behavioral change, medication and non-medication based treatment. First, reliable education material should be provided to the patient and an excellent source is online at the CDC website: CDC.gov/CFS. Behavioral modification has been effective to limit depression, anxiety and abnormal coping mechanisms such as denial and escape avoidance.
Pharmacologically, sleep disruption and pain are usually addressed first and may require consultation with a sleep specialist or a pain management group. We usually avoid narcotic pain medication but helpful therapies include tricyclics such as amitriptyline and cyclobenzaprine, the NSRI (sp?) such as duloxetine and nolnasapren (sp?) and antiepileptic medications like pregabalin. The next step in management is to address severe symptoms and to address those comorbidities that the patients suffer. Non-pharmacological therapy might include Epsom soaks, hot or cold packs, liniments, massage, osteopathic manipulation, acupuncture and the like.
16:00> Another form of non-pharmacological therapy is staying active but not too active. We recommend starting with very low levels of activity and proceeding slowly. Brief intervals of activity should be followed by adequate rest in order to avoid a flare of symptoms or to avoid the post-exertional malaise. Consider beginning with active stretching and range of motion exercises against gravity and then follow with light resistance training with light weights for example or elastic bands.
We then advance to certain types of aerobic activity such as tai-chi, yoga, walking, bicycling or aqua therapy. To avoid flares, patients should limit activity by time, say 5 minutes per day to start and limit the number of repetitions. If they experience any excessive fatigue, reduce the amount of time or the number of repetitions.
· NOTE the reference for this section is
· http://www.cdc.gov/cfs/management/managing-activities.html
· The Seventh Annual AACFS International Conference 2004, Madison, Wisconsin
17:00> So the summary from the clinical aspect is that we can find chronic fatigue syndrome present in both pediatric and adult groups, it typically has a preceding medical event, often infection, patients benefit from earlier, comprehensive evaluation and diagnosis, the disease can have severe impact on quality of life but improvement and recovery are certainly possible and there’s no curative therapy but graded exercise and some kinds of pharmacological therapy can be of great benefit.
searcher
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Thanks @medfeb! A volunteer just transcribed Komaroff's talk at https://drive.google.com/file/d/0B37JHmPXER6JMHdMTDE4WTlPS2s/view?usp=sharing so we have all four presentations and the FAQs transcribed now. I will try to post the entire transcript in one location soon for people who want quotes from the talks and/or people who prefer to read transcripts vs. watching videos (like me.)
Forbin
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I noticed this. If he's referring to Hillary Johnson's article, "Journey Into Fear," in Rolling Stone in the summer of 1987, then he's mistaken. The "Yuppie Flu" thing goes back at least a year earlier to an article in New York Magazine.
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The slides from the CDC Grand Rounds presentation (16 Feb 2016) are available as a pdf.
http://www.cdc.gov/cdcgrandrounds/pdf/archives/2016/feb2016.pdf
http://www.cdc.gov/cdcgrandrounds/pdf/archives/2016/feb2016.pdf
Did anyone transcribe what CDC's Associate Director for Science Dr Harold Jaffe said right at the beginning? I think there were some good quotes, coming from the CDC.
I will look into it if noone else has made a transcript of this.
Many thanks to @mango for the recordning and the Unger transcript, to @medfeb for the Lapp transcript, and to MEAction for the Komaroff and Nath transcripts.
I was VERY disappointed to hear Lapp proclaim GET to be "of great benefit". That baffled me.
Also disappointed that the severely ill didn't get more mention.
But there's stuff in Komaroff's and Nath's presentations that is useful, as well as some of the quotes from this Jaffe, I think. (I'm always thinking from the perspective of what I can use in my Swedish ME/CFS newsletter, which now reaches 1800 professionals.)
I will look into it if noone else has made a transcript of this.
Many thanks to @mango for the recordning and the Unger transcript, to @medfeb for the Lapp transcript, and to MEAction for the Komaroff and Nath transcripts.
I was VERY disappointed to hear Lapp proclaim GET to be "of great benefit". That baffled me.
Also disappointed that the severely ill didn't get more mention.
But there's stuff in Komaroff's and Nath's presentations that is useful, as well as some of the quotes from this Jaffe, I think. (I'm always thinking from the perspective of what I can use in my Swedish ME/CFS newsletter, which now reaches 1800 professionals.)
Here are some snippets from Dr Harold Jaffe's introduction. I realize this probably doesn't add a whole lot from a US advocacy perspective, but for my Scandinavian newsletter and for raising awareness here it's useful to be able to quote the CDC's Associate Director for Science stating that ME/CFS is a physical disease.
CFS is an important public health problem
We know that the disease is real and that affected patients suffer greatly. Furthermore the economic impact of the disease is felt across the country.
CFS is a biologically based illness that affects individuals in nearly all the aspects of their lives, significantly affecting their ability to work and support their families.
Sadly studies show that many patients experience significant barriers in terms of receiving appropriate health care. This need to change, we need to enable health care providers to better recognize and offer better treatment for this condition.
We need biomarkers to make the disease more clearly diagnosable, and you’ll hear some about those collaborations and studies that are underway with the goal of improving our diagnostic abilities and our treatments. But in the meantime, dedicated scientists, clinicians and patients are helping us incrementally build our knowledge base about the disease.
CDC’s approach includes working in partnerships with clinical research experts, patient advocacy groups and other governmental agencies.
CFS is an important public health problem
We know that the disease is real and that affected patients suffer greatly. Furthermore the economic impact of the disease is felt across the country.
CFS is a biologically based illness that affects individuals in nearly all the aspects of their lives, significantly affecting their ability to work and support their families.
Sadly studies show that many patients experience significant barriers in terms of receiving appropriate health care. This need to change, we need to enable health care providers to better recognize and offer better treatment for this condition.
We need biomarkers to make the disease more clearly diagnosable, and you’ll hear some about those collaborations and studies that are underway with the goal of improving our diagnostic abilities and our treatments. But in the meantime, dedicated scientists, clinicians and patients are helping us incrementally build our knowledge base about the disease.
CDC’s approach includes working in partnerships with clinical research experts, patient advocacy groups and other governmental agencies.