Chronic Fatigue Syndrome

hello i'm dr ken landau thanks for watching let's talk about the chronic fatigue syndrome this is a condition that's been diagnosed in somewhere between eight hundred thousand and two and a half million americans yet there's significant debate and conflict between patients and practitioners and researchers and advocacy groups as to exactly what the condition is some people even argue about whether the condition exists some argue about the pathophysiology we don't have any established criteria for diagnosis at the present time controversial views whether it's an organic condition something that's physically wrong or whether it's a functional condition or whether it's a psychological problem scientists tend to refer to it as the chronic fatigue syndrome cfs but patients and practitioners increasingly are using the term myalgic encephalomyelitis or immune dysregulation syndrome that would tend to indicate that there's some underlying significant disease yet we haven't been able to find any characteristics are persistent and unexplained fatigue that seems to worsen after physical and emotional and cognitive effort these people have problems even doing the basic household chores they find them exhausting they can't grocery shop every day they have severe impairment of the daily functions the condition was originally recognized in the mid 19th century but it really didn't gain any significant traction until the 1980s now the first major outbreak that was diagnosed as myalgic encephalitis was actually at the royal free hospital in london there 292 of the medical and nursing staff and 255 of the administrative staff came down with a condition but in spite of the fact that they were working in a hospital that was basically full only 12 of the patients seem to have been afflicted by the condition well myalgic encephalitis chronic fatigue syndrome seems to have the major component as fatigue was originally likened to noristhenia noristhenia was popularized in the 1820s then it was reintroduced in the 1860s by dr george baird who was a neurologist in new york city and he found that it was present mostly in busy society women overworked businessman vanduzen from the kalamazoo asylum in michigan said that most of the patients were wives who were sickened by isolation there's no recognized cause of the condition people think well it might be due to some sort of underlying infection or viral condition but really hasn't been anything that's found this is referred to as a psychiatric illness or the 20th century illness some people call it americanitis because it's principally in america but it's present to some extent throughout the world the largest outbreak the original outbreak in the united states was 1934 at the los angeles county general hospital there about 198 of the employees about 11 percent of the nurses five percent of the doctors seem to have been affected then in 1947 in iceland later in new zealand and sort of the condition that put it on the map was the lake tahoe condition in 1984 1985 they call it a chronic epstein-barr virus or the post-viral syndrome was an epidemic seemed to have been diagnosed by just a few doctors in a large number of patients centers for disease control went up there and they said well the evidence for epstein-barr virus is pretty inconclusive then it was called the yuppie flu in the 1990s researchers from depaul university in chicago randomly called 30 000 people on the telephone asked them about the symptoms if they had any symptoms they were invited to come in what came out of that was that the centers for disease control dropped the term rare from the diagnostic description of the condition well now we have a condition chronic fatigue syndrome where we can't decide on a name can't decide on a definition can't decide whether it's an illness can't decide on the underlying pathophysiology in the 1980s there were several definitions but it got to a point where the world health organization classified the noristhenia associated with chronic fatigue syndrome as psychiatric illness but the exact same symptoms could come on after a viral condition and they would call that post-viral fatigue they referred basically to both of those conditions then as this new term myalgic encephalomyelitis conditions exactly the same one psychiatric and one post-viral well that's basically where we are now in 1994 the centers for disease control came together and they made a definition for the condition and it was based on symptoms that are really non-specific it's overly inclusive of patients who don't seem to have specific severe symptoms so a lot of less ill patients were included none of the symptoms none of the inclusion symptoms were validated on broad population studies there were no biomarkers nothing that you could measure from the blood or from an x-ray that was abnormal and in addition there were a group of additional symptoms that could be used to make the diagnosis but unfortunately there was no apparent difference in people who met the diagnosis of chronic fatigue syndrome and people who didn't meet the diagnosis of chronic fatigue syndrome well the cdc's sort of non-specific definition was used up until 2015 when the institute of medicine came out with the definition they said it's persistent or relapsing unexplained chronic fatigue it was new or definite origin so it wasn't lifelong it wasn't from an organic disease it wasn't from continued exertion it was not alleviated by rest and the results show that people who have the condition had a substantial decline in their occupational and educational and social and personal activities from before they were sick additionally the centers for disease control said you had to have at least four other kind of symptoms so could be impaired thinking paired memory cognition or sore throat or tender cervical nodes in the neck or lymph nodes under the arms and the axilla could have muscle pain or pain in several joints or neurons had headaches unrefreshing sleep malaise after exercise symptoms had to last for at least six months well those are all pretty non-specific but they said well you can't explain it on the basis of some medical condition or depression or bipolar disorder or schizophrenia or dementia or delusional disorder or eating disorder like anorexia nervosa or bulimia wasn't because of alcohol or substance abuse wasn't because of severe obesity well all of those definitions lack any significant uniformity they lack any basis in medical thought so we can't really make a diagnosis on the basis of that so that led to somewhere between 2000 2002 some international panels got together and they tried to come up with a diagnosis in the united kingdom britain they had the center for world health organization guide to mental health and what they said is myogic encephalitis is a psychiatric condition we're going to code it as a psychiatric condition but at the same time the world health organization in general said no it's a neurologic disease and we buy into the concept of neuralgic myoencephalitis and we think that it might have something to do with inflammation so all the controversy finally led to a plea from the department of health and human services and fda and the centers for disease control social security administration group of other experts asked the institute of medicine here in the united states to form an executive committee and try to come up with a diagnosis or a set of diagnostic criteria that we could use to make the definition make the determination of whether a person has chronic fatigue enrollment what they did is in 2015 they came out with a set of three criteria now the first criteria is lengthy first criteria is a substantial decrease or impairment in a person's ability to engage in the pre-illness either educational or social or occupational activities had to be present for at least six months the fatigue had to be profound had to be new onset couldn't be lifelong and it couldn't be the result of excessive ongoing exertion and the problem couldn't be alleviated by rest additionally had to have remember the three symptoms and that was one number two is post-exertional malaise so after you exert yourself somehow you get tired and you have unrefreshing sleep well in addition to all of those you had to have one of two other symptoms it could either be cognitive impairment could cause problems with your thought or executive function seem to be worse with exertion or stress or could have orthostatic symptoms orthostatic intolerance so when you stood up the symptoms seem to get worse but they didn't necessarily go away when you lie down now those symptoms had to be present at least 50 of the time so again when you stop and think about it we don't really have a good definition and what the institute of medicine did is it said forget the terms myalgic encephalomyelitis forget chronic fatigue syndrome what we're going to do is we're going to take fatigue out of the whole story and we're going to call it the systemic exertion intolerance syndrome or seid so now we're adding another name to a condition that we still really don't have a means of diagnosis so the diagnosis is determined by a person's symptoms by a person's disability by the exclusion of other explanatory illnesses it's not identified by any kind of an abnormality on physical examination or blood test or x-ray test the common symptoms associated with chronic fatigue syndrome actually are the same that we would find in people who have certain psychiatric illnesses and to make matters even worse the symptoms of chronic fatigue syndrome aren't stable they fluctuate and at least a third of the people who have the chronic fatigue syndrome have either psychiatric illnesses or pain disorder or sleep disorder so it might be that chronic fatigue syndrome is really just the final common pathway of a variety of different conditions that cause it well people have looked for abnormalities in the blood really sophisticated abnormalities in the natural killer cell function or in immune dysregulation and they haven't really found anything yet in spite of the fact they haven't found anything now we have four terms for the same condition we have the myalgic encephalitis some people call it mecfs myogex encephalitis chronic fatigue syndrome some people simply call it chronic fatigue syndrome and now we have the new term systemic exertion intolerance syndrome they're used in different parts of the world but basically the same kind of condition but common to all of them the fatigue and the cognitive impairment the sleep abnormality seemed to be worse in an upright position and after you have some kind of exertion then you tend to have malaise well if we look at the symptoms that people complain of they present with severe fatigue not weakness but fatigue they feel drained of energy they have heaviness in their limbs sometimes they feel foggy in their head brain fog a lot of them have concomitant symptoms of other kind of conditions they have pain disorders at times exhaustion and weakness lack of energy they feel drained they can't stand for more than a few minutes they can't walk more than a block or so they have inability to sustain normal activities for a significant length of time they're oftentimes too exhausted even to change their clothes but every week or 10 days and there can be significant time lag between the trigger and the onset of the symptoms and then people unfortunately once they develop the symptoms the symptoms can persist for days or even longer and then remember we have that orthostatic intolerance when they stand up in an upright position seem to be worse than they are in a lying down position but just because they're lying down doesn't necessarily mean that the symptoms go away and if they're forced to push themselves they oftentimes have profound worsening of the symptoms now in addition they can have new onset headache can fluctuate weakly they can have muscle pain they can have joint pain there's that cognitive decline that we talked about where they have poor learning abilities and they can't remember words they have a decreased attention span decrease in multitasking people often refer to themselves as in a brain fog now if you ask the patients say what are your major complaints well they complain of a variety of symptoms and what the typical complaints are when we just do surveys of large numbers of patients or myalgia pain in the muscles they complain of severe joint pain and impaired memory or concentration they complain of gastrointestinal problems and headache and dizziness complain of nausea and lack of appetite and even night sweats other kind of symptoms that they may have or uncontrolled anxiety and panic attacks oftentimes they have manifestations of dizziness intolerance of alcohol intolerance of medicines if we look in tertiary medical centers so if we look at the mayo clinic if you look at ucla if we look at the university of chicago those are the tertiary medical centers where patients are often referred it seems that the symptoms come on abruptly and they come on after a significant illness of some sort typically an infectious illness these people were highly fit prior to the time they become ill they have swollen nodes they have sore throat and they're over represented in clinical studies because it's the big medical centers that do most of the publications on the other hand if we look in general society we find that most people have chronic fatigue syndrome in the general population their symptoms come on slowly they don't necessarily have enlarged nodes so it doesn't appear that they're suffering from the aftermath of an infectious condition and remember the symptoms tend to come and go they vary in frequency and severity interfere with the activities of daily living a lot of patients complain of depression we find that depression is commonly present in a substantial number of patients but it may be misdiagnosed as chronic fatigue syndrome or chronic fatigue syndrome can be misdiagnosed as depression now if you go and look at the symptoms of fibromyalgia the symptoms seem to be pretty similar and as a matter of fact they're basically identical so are we dealing with two different kinds of abnormalities are we dealing with one abnormality that now we throw another name in we can call it fibromyalgia as well well the precipitating events in those people especially the people who go to the tertiary medical centers oftentimes bacterial infection viral infection fungal infection may be major surgery maybe a motor vehicle accident or a concussion or pregnancy or maybe a severe mental stress maybe there's a family history maybe not well we find that some people have an underlying personality that might predispose so people who are neurotic people introverted people who are inactive in childhood sometimes a family predisposition oftentimes much more common in women than in men we find the precipitating symptoms tend to be relatively severe so it's not when we talk about an infection we're not talking about the common cold we're not talking about gastroenteritis but we're talking about a significant problem with the flu or other similar conditions well sometimes we have perpetuating conditions so once you have the condition it seems to be perpetuated and reinforced by people who are in your environment partner family member and by doctors who keep saying well it might be this disease might be that disease so you keep getting unnecessary tests blood tests or imaging tests doctors oftentimes suggest that it's a psychiatric disorder which really aggravates the patient a lot of doctors don't recognize that chronic fatigue syndrome is actually a disease well also perpetuating the condition some patients receive some financial benefits or special care special attention so there's psychological issues it seems that if we talk about family history that monozygotic twins identical twins don't seem to have a higher risk for the condition than other family members sometimes there's lack of social support if we look at the epidemiology of the condition who gets fibromyalgia tends to be three-quarters of the patients are women quarter of the patients are men tend to be more in the caucasian population than in non-white population tends to be more in the lower the mid-socio-economic age range seems to be also perhaps less education less occupational advancement tends to occur in people in the late twenties up to the mid forties but sometimes could be diagnosed even people in their seventies doesn't seem to be very common in adolescents or children once the symptoms begin they tend to last for a long period of time often three to nine years if we look at the general population we find that anywhere between point two and slightly less than one percent of the population might suffer with condition but if we use the systemic exercise intolerance disorder use the diagnosis it's almost up to three percent when the united kingdom they found in primary care that it was also about two and a half three percent but when they started taking out the comorbid psychiatric disorders the incidence fell down to just 0.5 so if we look at what's happening to the patients who have the chronic fatigue syndrome about a quarter of the patients are bedridden a quarter of the patients are housebound only about 20 percent of the patients are pursuing full-time occupation they're frequently misdiagnosed even in the chronic fatigue center syndrome chronic fatigue syndrome centers can be misdiagnosed and not infrequently now most of the people in the community who make the diagnosis chronic fatigue syndrome are not the specialists not the psychiatrists they're the general practitioners they don't have any special expertise in the condition there are no laboratory tests to confirm the diagnosis no x-ray tests to confirm the diagnosis at depaul university they came up with a questionnaire they used the canadian census criteria even though depaul is in chicago in 2010 they came up with 54 questions if you answered those questions and the results were positive it was sensitive in about 92 percent of the time but the specificity so ruling out the diagnosis only 75 so you still need a good medical examination there are other questionnaires available but the one from depaul seems to be the best the diagnosis oftentimes patients make diagnosis themselves vary according to the presentation most of the patients are unhappy and dissatisfied with the quality of medical care they receive but remember we don't even have a diagnosis we don't have a set of criteria we don't have a set of standards we don't have any laboratory tests that can confirm the diagnosis people who have the chronic fatigue syndrome depending on the group might have no premorbid psychiatric disorder might not have any kind of abnormality and sleep when we examine the patients seems that they're not any substantial underlying diseases that we're missing so it's not that they have cancer it's not that they have other serious physical abnormalities actually the one that they have the most commonly when patients are examined is depression and fatigue remember is subjective how do you define fatigue how can you rate fatigue to find out how much fatigue you're feeling compared to someone else well the differential diagnosis is wide but we do find that if we evaluate people who have the chronic fatigue syndrome a significant number have depression significant number have the fibromyalgia because the diagnostic criteria are pretty much the same irritable bowel syndrome circadian dysrhythmia syndrome intestinal dysregulation altered mitochondrial function and some people have lupus or sjogren's syndrome variety of eating disorders or schizophrenia or somatoform disorder or anemia or iron deficiency some people have hiv other people have celiac disease or inflammatory bowel disorder some people have dementia or orthostatic hypotension or multiple sclerosis some people just taking too many drugs they've received prescriptions and and unfortunately sometimes the prescriptions may lead to symptoms of chronic fatigue syndrome some people have respiratory conditions chronic obstructive lung disease copd or sleep apnea or addison's disease or abnormalities of the thyroid workup for the patients relatively straightforward just a simple cbc and a blood test and thyroid function maybe some gluten sensitive studies to find out if celiac disease underlies it check to make sure a person doesn't have any drugs in the system but there are no diagnostic tests that are available now as far as some underlying condition they're still grasping so in 2009 a report came out and everybody was so excited it seemed that a retrovirus retrovirus kind of like the aids virus was responsible but two years later they had to retract the paper because it was in error well in 2011 2013 the pact trial pact truck came out and it bolstered the idea that exercise was the most important kind of activity for these patients but the patients were sort of leery about that because they said that the exercise seemed to make them worse but remember we don't have any biomarkers at the university of miami they've come up with a couple but they seem to be contradictory and they seem to not be uniform and they haven't been widely accepted other people think there's abnormality of the natural killer cells or abnormalities of the cytokines or too much oxidation or not enough glutathione in the system or too many free radicals floating around or abnormalities in the glio cells in the brain maybe some epigenetic changes or some micro rna none of that makes any sense and none of it has been proven and none of it can be relied upon and actually if we look at recovered patients who used to have chronic fatigue syndrome and we test them against the patients who do have the chronic fatigue syndrome we can't find any difference in the two groups the only beneficial intervention so far cognitive behavioral therapy and graded exercise therapy and they don't work really all that great but that's pretty much all we have some people use a series of drugs or immunoglobulins or steroids or supplements or complementary therapies or antihistamines or opioids or tricyclic antidepressants or anti-anxiety medicines panic medicines antiviral medicines interferon and some have even gone so far as to use some cancer chemotherapy on these patients all of those should be basically avoided unless there's an underlying condition that's diagnosed that would warrant that kind of therapy so where do we stand right now with myalgic encephalomyelitis or systemic exertional intolerance syndrome or chronic fatigue syndrome maybe just multiple conditions under an umbrella term maybe it's the final reaction to viral infection in some and stress in some psychiatric condition in others but at least at the present time we can say that there's no obvious explanation for why the people have the underlying condition why the people have the symptoms that they have and we have advocacy groups and advocacy groups are pushing for making this a specific condition yet that's before we even have a diagnosis before we can even understand what the condition is so we're getting the cart a little bit before the horse yet in spite of all of that the diagnosis has been made in somewhere between eight hundred thousand and two and a half million people so the situation the way it stands right now it's a mess it's actually quite intolerable anyway thanks for watching if you enjoyed the show please tell a friend consider subscribing so you'll be notified when we post new videos i appreciate your interest i'm dr ken landau [Music] so [Music] you

Channel: wellnowdoctor

Views: 5,253

Rating: 4.8685446 out of 5

Keywords: chronic fatigue syndrome, CFS, Myalgic encephalomyelitis, fibromyalgia, chronic Epstein-Barr virus infection, systemic exertion intolerance disorder

Id: 9LCQFDrRLx4

Length: 28min 56sec (1736 seconds)

Published: Mon Sep 28 2020