CDC #2, James Jones MD, on CFS incl. CDC research

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Sep 19, 2009.

  1. QuayMan

    QuayMan Member

    (Buried in this, one can see how Dr Jones sees CFS patients. It's more bland at the start unfortunately.

    It also discusses some of the research the CDC are doing e.g. using fMRI.

    It might be more interesting to watch it at: http://streaming.biocom.arizona.edu/people/?id=11525 but at least now you won't have to take notes. It's an hour or so as I recall. Well done to Tate for transcribing - I know that sort of job is really frustrating and must have taken many, many hours.

    If anybody wants to link to the transcript e.g. from a blog, website, etc, (hint!),
    http://tinyurl.com/jamesjonesoncfs
    i.e.
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0909A&L=CO-CURE&P=R3247&I=-3

    ==========
    -----Original Message-----
    From: ME/CFS and Fibromyalgia Information Exchange Forum [mailto:CO-CURE@LISTSERV.NODAK.EDU] On Behalf Of Tate Mitchell
    Sent: 07 September 2009 23:15
    To: CO-CURE@LISTSERV.NODAK.EDU
    Subject: [CO-CURE] NOT: Unofficial transcript- James F. Jones, MD, CDC, speaking at the Univ. of Arizona Health Sciences- OB/GYN Gr and Rounds- ‘Chronic Fatigue Syndrome in Women’- Monday, April 23, 2007

    [If anyone wants this, I can send it in a .doc format]

    **********************************

    Monday, April 23, 2007
    OB/GYN Grand Rounds
    ‘Chronic Fatigue Syndrome in Women’
    James F. Jones, MD, CDC
    speaking at the Univ. of Arizona Health Sciences
    [ [?] indicates difficulty transcribing]
    http://streaming.biocom.arizona.edu/people/?id=11525


    [Introductory Speaker]: Well good afternoon everyone and a special
    welcome to our remote sites, I would ask you to please turn off your
    microphones during the presentation, and then I will invite you to
    reactivate those after the presentation, and that way the background
    music, haha, the background discussions won’t interfere with the
    presentation.

    We’re extremely fortunate today to have as our guest speaker Dr. James
    Jones. And as I was thinking about the presentation that he is doing
    today, two things came to my mind. For those of you that have been in
    the field of obstetrics and gynecology for any length of time, we have
    all seen those scenarios where a disease entity, or a problem entity
    comes into our specialty and we never know quite what to do with it,
    because if there isn’t an excess or deficiency of something, we can’t
    really categorize it or buttonhole it in a comfortable way, and it
    takes years for this to really materialize, and I can even recall back
    in my career where we really thought that pre-menstrual syndrome
    wasn’t a real entity, it was just something that certain patients had
    manufactured. And whether the speaker will agree with me or not, I
    think that the Chronic Fatigue Syndrome kind of falls into that area
    where we’re learning more and more about it and trying to be more
    effective as practitioners in dealing with it.

    Then the second is just the background of our speaker, and although as
    I see we’ve never had an opportunity to interface, Dr. Jones has been
    primarily in the area of pediatrics where I’ve been in OB/GYN, we have
    a lot of things in common in that we were both at the University of
    Colorado for a period of time, I would guess that some of the
    colleagues and faculty that I knew at the medical school who were on
    the faculty at National Jewish Hospital would be familiar names to
    you(Dr. Jones), and as well as some of the professors that trained me
    when I was at pediatrics.

    Dr. Jones received his Bachelor of Arts from Duke University, and his
    M.D. from the University of Texas Medical Branch. His career has
    focused more on the research area than the clinical area, and as you
    read through his curriculum vitae, besides the plethora of articles
    that he has published you see the presence of Dr. Jones in many NIH
    study groups, and as a reviewer for many of the journals. And his
    interests, I believe, have been chronic conditions and chronic areas
    of illness. And so recently as I see this he has developed a
    significant expertise in chronic fatigue.

    I was telling Terry that often we receive these invitations to have a
    visiting professor, and then we respond and they just go away, we
    never hear from them again, so we were delighted to be able to attract
    Dr. Jones to talk to us today.

    So with that I hope not too long introduction, please welcome Dr.
    James Jones, who is going to talk to us on Chronic Fatigue Syndrome in
    women and the work that’s going on with the Chronic Fatigue Syndrom
    Research Group. Please welcome him with a nice round of applause.

    [Dr. James Jones]: So good day. Actually Chronic Fatigue Syndrome is a
    evolving entity and my involvement in it actually began quite a while
    ago but with a recent four and a half year- or four year move to the
    Centers for Disease Control from Denver.

    We started looking at this illness back in the early 80's when I was
    actually in Tucson on the faculty, as a chronic infection, or a
    chronic illness associated with the consequences of infection, and it
    evolved eventually into what the current state is. And so let’s get
    started with definition.
    (5:00)
    As it stands it’s related to fatigue but it also has two other
    components. And the fatigue is present it has to be there for at least
    six months, it’s not alleviated by rest and it’s a substantial
    reduction in activities. The second component is there has to be no
    underlying or explanatory medical or psychiatric cause, and thirdly
    you have to have four of these eight symptoms for that six month
    period or more.

    And you can look at this right away and see that it’s probably not a
    disease, but it’s a true syndrome, and that the orange in the middle
    there(referring to slide), the no explanatory medical or psychiatric
    causes, one thing I want to bring up from the start is that if one
    excludes people who fulfill this definition because they have one of
    those things, you’re still stuck with someone who has the fatigue and
    has the symptoms.

    In other words, are- should we be excluding anyone, or should this be
    a syndrome similar to fibromyalgia when you can have other illnesses
    and still fulfill the syndrome? In essence we don’t know when we
    exclude someone whether they’re- what they’re perceiving as illness is
    associated with this problem or whether it’s associated with their
    primary illness. The assumption is that it’s the primary illness, but
    we really don’t know that.

    So CFS in the US. The little dots on the map really are associated
    with sites where we’ve- where people have done clinical studies. In
    Seattle, Dr. Dedra Buchwald, and we’ve done studies in San Francisco,
    there was another clinical epis- in different parts of California,
    Lake Tahoe Nevada, we’ve done studies in Wichita Kansas, the study in
    Georgia, years ago and then in obviously various sites in the country.
    So the illness is not limited to one particular place.

    At latest count there are probably four hundred- I mean four million
    people in the U.S. with this- the full blown syndrome, and another six
    plus million with a syndrome that is CFS-like but is- but is minus one
    of the components or you have three symptoms and not four symptoms or
    you’re are- are so on and so forth.

    Now the clinic populations where most of the studies were done until
    recently show that they were primarily women. The general population
    studies that we’ve done, there’s one been done in Chicago, we did one
    in Wichita, and we have one that’s hopefully going to be in press soon
    from the Georgia population. And we still find that people with this
    illness are primarily women.

    In the original clinic studies they were upper-middle class
    professionals, and in the general population they are as many in the
    lower socio-economic groups. In the original studies they were
    primarily white and now they’re everybody. And most reported a sudden
    onset originally, and when you go into the population however to
    identify people, they’re- they are gradual onset of chronic illness.

    The average duration in each instance is over five years, and many
    physician visits per year in the clinic populations, but only sixteen
    percent in the patient- in the population studies have- were
    identified in their population and received treatment. So it’s- it’s
    a- there are a group of people out there who fulfill the syndromic
    definition who are not receiving care.

    The economic impact is significant, the annual productivity loss in
    our study in Wichita was nine billion dollars, men and women both but
    predominantly women. And the annual loss to each family was at least
    twenty thousand dollars.

    So there are some limitations to this definition, still. And it was
    originally developed by consensus, it was not empirically derived.
    It’s based on clinical experience not population based, it was defined
    by symptoms and the consequences of those symptoms. It focuses on
    fatigue, and the sensitivity specificity is not defined. In other
    words the specific patho-physiological processes have not been
    identified. And like I said before it requires exclusion of other
    illnesses.
    (09:50)
    There are some correlations however that have evolved over the years,
    in terms of impairment, with the- with both fatigue and symptoms of
    classification. In utilizing the medical outcome survey short form 36,
    there are eight different domains, and you can see that the scores in
    the chronic fatigue people in each of the domains is- is much less
    than in people who don’t quite fulfill the definition, the so- ISF, or
    insufficient fatigue, and then individuals who were not fatigued at
    all. The higher the number the better the score with the medical
    outcome survey.

    And like-wise, the multi-dimensional fatigue inventory, another
    questionnaire scale, patients have higher scores than do the other
    groups, and a higher score in this instance is more symptomatic. And
    then the CDC symptom inventory scores are much higher as well. So that
    one can apply these questionnaires and empirically identify patients
    with the syndrome. And that’s based on a- or it’s been reported in BMC
    Medicine December 2005, and use up- utilizing these four scales of the
    SF-36- physical function, social function, role physical and role
    emotional, if the scores are less than these numbers in any one of
    them, and they are greater than thirteen and greater than ten in these
    two, and you have symptom scores greater than twenty-four, then you
    fulfill the definition.

    So that instead of the process of us- of trying to sort out whether
    they have been fatigued, for how long, whether they don’t- their
    fatigue isn’t interfered with by rest, etc., you can use these
    questionnaires to try and identify patients.

    So we’ve been doing this now in Georgia, and the reason I bring up
    Georgia is it exemplifies the method that we used to identify people
    in the- in populations.

    We were interested in whether or not there are differences between, or
    among, metropolitan, urban, and rural areas. And so, we actually
    contacted several tens of thousands of people. Five thousand people
    were interviewed on the telephone, and you can see the numbers there,
    and in this study we used the concept of unwellness rather than
    fatigue to identify patients. And unwellness meant that they had one
    of the four major symptom areas, they had- besides fatigue, they had
    fatigue, they have cognitive problems, they have chronic pain, they
    had muscle aches and/or joint aches.

    So in identifying those individuals, we eventually got seven hundred
    to clinic; and in our studies we have to bring them to clinic to
    exclude other primary illnesses. And so the individuals who are
    CFS-like, fulfill the definition but they haven’t been to clinic;
    whereas those that as you can see here, these individuals who are
    CFS-like, there were another two hundred sixty eight that were
    chronically unwell, who didn’t fulfill the definition, and then there
    were one hundred and sixty three well and again, some people who were
    unwell for a long period of time who didn’t fulfill the definition
    with or without fatigue.

    So this demonstrates more critically the screening interview of
    nineteen thousand, ten thousand were well, eight thousand were unwell,
    not fatigued, and then another three thousand were well. And these
    individuals had a detailed telephone interview, after random
    selection, random selection of the non-fatigued showed two thousand
    people and then these fatigued individuals.

    So anyway, the- if you can see that, I don’t know whether that can be
    seen very readily(referring to slide), the detailed telephone
    interview determined demographic data, it determined fatigue in the
    last month, duration, severity, whether rest improved, limitations,
    onset, and then whether they had the eight- any of the eight symptoms,
    duration, frequency, severity; they were screened for exclusionary
    conditions, they did a short-form twelve, which estimated their
    disability, and then they had other questionnaires looking at lifetime
    experiences, health services utilization, occupation, and impact.
    (14:40)
    Then the ones that were identified were brought to two different
    clinics, one in Atlanta and one in Macon, where they had a very
    thorough evaluation, and I- you all hopefully can read that better
    than the last time(slide)- and so we got medication history, they had
    an exam, they had screening lab tests done for our study, they had
    cytokines and some genotyping studies done, cortisol was measured
    because the HPA-axis is considered to be a problem, and then they had
    all of these other questionnaires done.

    They were also looked at in terms of psychiatric diseases, residence
    history, health services utilization, family history, anything and
    everything you wanted to know, and then very importantly they had
    life-experience looked at, and I’ll tell you why in a moment, and then
    ways of coping. So this addresses the entirety of illness. This is
    just not people feeling tired. These people are ill, and these
    questions really try and get at the bottom of why they might be ill.

    One of the things that we did identify were exclusionary illnesses.
    And even in the people who said they were well, three percent had
    psychiatric diseases, and twenty six percent had underlying medical
    diseases. Those that weren’t- didn’t quite fit the definition were
    slightly higher, and then in the chronic fatigue themselves, there
    were significant numbers of individuals with underlying diseases.
    Therefore, they were excluded from the CFS evaluation. They haven’t
    been thrown out though, because I’m in the process now of looking at
    these people to see if they are- if they differ in any other way from
    the syndromic definition. And thus far they don’t, as a matter of fact
    they’re probably sicker.

    The exclusionary diagnoses that these people had were as listed
    here(referring to slide), many of these people had been undiagnosed.
    They didn’t know they had a thyroid condition or they didn’t know that
    their thyroid control was not adequate. A number with anemia,
    likewise, and diabetes. So although you- we think that patients are
    being identified properly in the population, this suggests that some
    of them aren’t. The most meaningful one was a woman with diabetes,
    whose doctor kept fussing at her because her diabetes was always out
    of control, and it turned out she had Cushing’s Syndrome. Totally
    unknown to her providers. And likewise the psychiatric diagnoses also
    were not uncommon.

    Now in Georgia, and this gets into the distribution of illness. In the
    metropolitan area, you can see that Chronic Fatigue Syndrome occurred
    four point four times more frequently in females than it did in males.
    And this number is high, this number- two point two percent, is ten
    times higher than had been seen in our Wichita study. Those that have
    insufficient fatigue, they didn’t quite fit the definition, and those
    that were unwell, fatigued, are very very high, but they’re equal in
    the population. The unwell fatigued, there’s no difference between
    males and females. You see it in those who almost approach the
    syndrome, and in those who definitely have the syndrome. This suggests
    that it’s not more common in rural areas, but is still more of a
    problem in urban and metropolitan areas. Let me define urban and
    metropolitan, metropolitan is the Atlanta area, two counties, several
    million people, urban is the city of Macon, which is a small city of
    several hundred thousand, and then the rural are the counties
    surrounding Macon. So the distribution does appear to differ amongst
    the different geographic areas, but that the total numbers are very
    much the same. It’s just that there seems to be more of them in urban-
    more women in the urban and metropolitan areas.

    So this leads us to the rather obvious statement that CFS is a complex
    illness. There are environmental stressors that impact illness, there
    are major life events, there are emotional stressors, all of these are
    involved in perceived stress. There are behavioral responses that
    impact illness, there are host factors that impact illness, and then
    all of these also impact physiologic responses.
    (19:45)
  2. QuayMan

    QuayMan Member

    (19:45)
    One of the things that we’ve been looking into recently is the process
    of interoception. I don’t know- is Bud Craig still associated with the
    hospitals here? Did he move on? Anyway, he and others have decided
    this process- or described this process of interoception, which is how
    your brain monitors what is going on, and how you feel in response,
    how you register those. So your monitoring is- you sit there, your
    brain is monitoring everything- you’ve just eaten, it’s monitoring
    glucose levels, it’s monitoring gastrointestinal function, etc. And so
    if there is a problem there then interoception leads to adaptive
    responses, you adapt both at the physiological level and the
    psychological level, and that one of the things that is monitored in
    this respect is a concept called allo-static load, which is supposedly
    your lifetime stress. So that when you can- if you can imagine in all
    these factors are involved in this illness, and you started up here
    and you looked at each and every one of these(referring to slide),
    finding out what might be going on, as I’ll show you, might be more a
    problem than you think. Whereas if you look at this line, as we’re
    starting to do now, you might be able to sort things out a little bit
    readily- more readily. And so, to an OB- and originally this was an
    OB/GYN talk, but it certainly impacts the interns here.

    And so the question is, since there are so many women in this, this is
    an obvious question, do sex and/or gender play a role, we don’t know
    which. Obviously yes, but how, is it the cop out that certain of us
    are from Mars and others of us are from Venus, or is it sex vs.
    gender? Gender is become a modern term for sex but it really isn’t. It
    was originally intended to emphasise social and cultural as rather
    than the biological. And these definitions comes from the online
    version of the Oxford English Dictionary, which is a great source.

    Sex however is distinction between male and female in general, but it
    has to do with structure and function of reproductive organs on the
    ground which humans are distinguished as male and female. And the
    reason I bring this up is that everybody seems to think that one of
    these two things might be involved in this syndrome to explain the
    increased prevalence in women, but we also have to think about genes,
    and is it gene- at the expression level, is it at the SNP level, are
    there epigenetic factors involved, which is methylation, are there
    protein products or proteomics involved in this, is it all
    X-chromosome or are the other chromosomes involved- or products of the
    genes in those involved? So we’re looking at this but the majority of
    these studies are still pending.

    So when you try and think about differences between men and women in
    terms of illness or disease expression, there are a lot of components.
    Now I will mention a couple of studies that have attempted to address
    this. And the on- the reason I’m add- going to mention a couple of
    studies, is that’s all there are. I mean we’ve known about this
    prevalence difference for years, but there are only two real
    publications. And this happened to be based on the nineteen eighty
    eight definition, the one I gave you was the ninety four, and the
    eighty eight definition was more complex, you could have eleven
    problems, you had to have physical findings, and it was abandoned
    after a study in the early nineties showing that it was- it identified
    too many people with somatization disorder, and that it was impossible
    to determine, or to use in it a fifty percent reduction in activity,
    and so on and so forth. So, that’s why the ninety four definition came
    into being.

    So this study used individuals with the eighty eight definition, they
    found a hundred and fifty people from a research center in Boston, and
    a hundred and forty nine non-gynecological pat-peoples in the medicine
    waiting room as control subjects. So it’s not really a population
    study but it’s a highly biased clinical study.

    The summary in this was that the individual with CFS had increased
    gynecological problems, and decreased pre-menstrual symptoms, which
    one finds interesting if you think that this is a female hormone
    problem. This slide is simply shown to show the factors that they were
    addressing, whether they used contraceptives, their menstrual periods,
    bleeding, hormonal imbalance, endometriosis, thyroids, etc. as you can
    all read here.
    (24:52)
    The critical part of this is that the differences between cases and
    controls suggested that hormonal imbalance may be an important
    phenomenon, since the odds ratio there was 4.1/. Endometriosis was
    more common, uterine fibroids, polycystic ovaries, were likewise had a
    high risk factor, the highest risk factor was galactorrhea, but
    clinically speaking in twenty years of seeing these people this was a
    relatively uncommon phenomenon.

    So there was no significant association between birth control pills,
    irregular cycles, amenorrhea, bleeding between periods, etc. So just
    as Dr. Maddox was saying the pre-menstrual syndrome, it probably may
    not be related to overt findings in this arena. I remember being on a
    program once with David Rubinow, who is now chair of OB/GYN and I
    can’t remember exactly where, but he left the NIH and he was studying
    pre-menstrual syndrome, and the message of his talk was that when you
    looked at hormone levels between the two different groups there are
    absolutely no differences whatsoever. So hormones may not be the area
    of interest that we need to look at.

    Now in terms of pre-menstrual symptoms, it’s interesting that the- and
    again, I’m not going to go through all these, but there were two areas
    here where the pre-menstrual symptoms were- I mean most of the
    controls had more pre-menstrual symptoms than did the cases, and these
    were individuals before the onset of the syndrome. And I found that to
    be rather intriguing, that the- except for weight gain and one other
    thing down here somewhere, the inability to concentrate, these were
    more prevalent- these symptoms were more prevalent in controls than
    they were in the patients who eventually went to CFS definition.

    And these are the odds ratios of the selective pre-menstrual symptoms
    following the onset of symptoms, and you can see that the major- the
    two major really have to do with the syndrome and not necessarily the
    pre-menstrual syndrome. And that’s fatigue and the inability to
    concentrate. So these are probably related to the development of the
    syndrome, how vision problems rolls into this we obviously have no
    idea. But I think the issue again is that if you want to blame this
    illness on menstruation and menstrual problems, the data are not
    necessarily there to support it at this juncture.

    Pregnancy. The second study is a pregnancy study. And this question
    raised a lot of hoopla back in the early days of the syndrome when
    there were actually lay publications that suggested that women who had
    this syndrome who became pregnant should terminate their pregnancy
    because of the syndrome. And I had the unfortunate experience of
    visiting with one woman who did that and she was absolutely
    devastated. And it turns out that there was no reason to foment that
    belief even at the time. Pregnancy in this study did not worsen CFS,
    maternal and infant outcomes were not worse. Of those who had
    pregnancies before and after the CFS, the majority had pregnancies
    after the onset of CFS, and spontaneous abortions and developmental
    delays were associated with maternal age and parenting and had nothing
    to do with the syndrome. In fact I had one lady who had six of seven
    children because she felt so good when she was pregnant. Her CFS went
    away. So you have now heard the world’s literature on the relationship
    between CFS and pregnancy and the female hormonal system, and we don’t
    know very much.

    Now this might be more important. We did a study similar to the
    Georgia one that I talked to you in Wichita, previously. And the thing
    that came out of this one was CFS was associated with early life
    stress, and that 86% of the individuals who we studied were women. And
    this had to do with sexual abuse and emotional neglect. So that- and
    that CFS is greater in individuals with allostatic load, which has
    become an interesting phenomena. And in terms of the chromosomes,
    chromosomal studies, CFS is associated with MAOA receptor
    polymorphisms in women. And again that’s a preliminary finding and
    needs to be looked at further. So that both the probably the gender
    and perhaps the sex issues may be impacting illness. CFS is not
    associated however with serotonin receptor polymorphisms in women or
    men.
    (30:35)
    So the gender issue goes back- this goes back to the stress study by
    Christine Heim based on our Wichita data, and it demonstrates that
    both sexual abuse and emotional neglect are really critical in
    childhood in developing later on the Chronic Fatigue Syndrome. So
    gender probably is terribly important.

    Allostatic load, I don’t know how much you all are doing with, or how
    much anyone is making sense out of allostatic load, but it’s a way to
    try and quantify the cumulative life stress in people.

    And these are the variables that go into determining the risk, and
    they’re cardiovascular factors, C-reactive protein, I must remind
    people, is not just a cardiovascular factor but it’s associated with
    inflammation response to infection, changes in menstruation, all kinds
    of things. And then standard heart rate, diastolic blood pressure,
    albumin is a factor involved in maintaining vascular volume, which
    obviously has to do with vascular function. And then you have the
    metabolic factors associated with lipids, glucose metabolism, insulin,
    body mass index and so forth.

    So coming up with values above this when we looked at our patients in
    our population study, it turned out that the odds ratio for CFS was
    quite different between females and males, particularly with high
    allostatic load variables. The odds ratio was 5 ½ if the allostatic
    index was greater than 6 in females, it was 2.3 in males, but- in
    other words when we do our population studies and we look for illness
    and Chronic Fatigue Syndrome, are we really measuring a syndrome or
    are we simply measuring- studying individuals who have had marked
    accumulated life stress and are developing the illnesses that one
    develops when you’re 50 years of age or more?

    So the associations we found, that the unwell people- those who didn’t
    have necessarily Chronic Fatigue Syndrome, had a very high allostatic
    load- remember these are the people who were up to 17% of the
    population. So that there- it appears that there are a lot of
    unhealthy people in Georgia. And the Chronic Fatigue Syndrome are
    distinguished from the unwell by their marked increase in a very high
    allostatic load. Association with allostatic load in unwellness are
    detected among females and what could it- this is the big question,
    what could account for these observations? And I don’t think I have an
    answer but one approach is the metabolic syndrome. Another evolving
    area in medicine and probably in OB/GYN, in that people with metabolic
    syndrome have impaired glucose metabolism, insulin resistance, they’re
    at risk for diabetes, myocardial infarction, stroke, etc. And in the
    NHANE study, which was a national health survey conducted by the CDC,
    it’s also associated with [angina?] heart attack and coronary heart
    disease.
    (34:28)
    And these are the factors that allow identification of metabolic
    syndrome. And one is abdominal obesity, high triglycerides, lipids,
    blood pressure and fasting glucose. And applying those criteria, the
    odds ratio of metabolic syndrome [?] with CFS was 7. Whereas in males
    it was much lower. So the issue is in this population of individuals
    identified with Chronic Fatigue Syndrome, are they ill because of the
    metabolic syndrome or is this simply a coincidence?

    So let’s talk about diagnosing the syndrome and what one may need to
    do that. It relies on history and physical. Fatigue- when you see a
    patient who complains of fatigue, you have to know what the fatigue
    means. The idea is finding out what the matter with the patient is and
    not- and not simply identifying the syndrome.

    So one example is that they- if they say they’re sleepy when they’re
    lethargic. If they say their fatigue is like having the flu, which is
    lack of energy and other symptoms, then you have to be concerned about
    infection or inflammatory disease. If you say they have leaden limbs,
    and it’s similar to a post-exercise state, you have to worry about
    cardiovascular phenomena and obviously if they’re sad and down you
    worry about depression.

    So this lists a variety of exclusionary conditions, and if you have a
    chronic active infection and you feel sick well then you have a very
    good reason for your fatigue. If you have cancer or you’re on a
    chemotherapy you have a very good reason for your fatigue. And so
    these are the illnesses that are virtually automatic excluded when a
    person comes in complaining for fatigue or is referred for evaluation
    of their fatigue. I mean they have fatigue, and one of the conundrums
    is that particularly in inflammatory diseases and in the thyroid
    diseases that you hear the rheumatologist say ‘well their primary
    disease or lupus or RA is under control, their labs are normal, they
    don’t have any active joint problems’ but yet they complain of all
    these different symptoms. So the query is why do they feel bad, do
    they feel bad because of the rheumatologic disease or do they feel bad
    because of this constellation of symptoms that has been labelled
    Chronic Fatigue Syndrome?

    And again the exclusionary psychiatric illnesses are listed here, and
    there are a variety of co-morbid conditions that are not excluded.
    Fibromyalgia is not exclusionary and as this list goes on. And one can
    also wonder whether these illnesses also have to do with alterations-
    cumulative alterations in monitoring bodily processes and that this is
    really an illness of interoception, or an alteration in your
    self-perception.

    So what do you do with these people? You identify the primary symptoms
    interfering with their function. If they say it’s their sleep you go
    into a detailed sleep history as we’ll do in a minute, you treat the
    co-morbid conditions, medication- over medication is a real problem in
    these people because they go see their docs, the doc wants to make
    them feel better so they give them 5 or 6 pills and if they don’t work
    they increase them and they give them more, and very frequently the
    medications are actually contributing to the program.

    The two most common effective, documented therapies are graded
    exercise and some type of cognitive behavioral therapy- CBT. Graded
    exercise means that if you’re not doing anything, you start doing
    something in a very low level. You don’t automatically go to the PT
    and get put into an hour program. You start walking for 5 minutes, and
    when you can walk for 5 minutes every day for a week and not feel
    tired, you go to 7 minutes. So it’s really an extraordinarily slow
    program. But in essence you’re training the individual and they’re
    training themself that being physically active is ok and that lying on
    the couch is not ok. And likewise the formal Cognitive Behavioral
    Therapy teaches them about the illness, teaches them how they need to
    alter their behavior, and it has been shown to be very helpful. A
    common sense approach using the same or devising the same coping
    skills also is very helpful, and then obviously social support. So
    management takes work and this is part of the problem with seeing
    these people is you just can’t tell them to go do this or go do that,
    take a pill and they’ll get better, it takes effort. And I think here
    are some management resources that will be made available regarding
    the Cognitive Behavioral Therapy, this was a meta-analysis in JAMA in
    2001 which was very good, and then the efficacy of graded exercise.
    (40:00)
  3. QuayMan

    QuayMan Member

    (40:00)
    Now if we have time we’ll go through a few examples. So this lady is a
    clothing store franchisee who comes in with fatigue, trouble
    concentrating, aches in her legs, has occasional headaches, and her
    symptoms are worse following exertion. She had been to another
    physician who on the first visit diagnosed her with CFS. Unfortunately
    that’s a problem because one thing you don’t do is diagnose people
    with this after the first visit. You want to know why they might be
    there and what might be going on. She was treated with a serotonin
    re-uptake inhibitor and pain medication and rest. And she had no
    improvement over 18 months despite multiple medication changes. A more
    thorough history revealed that her fatigue was similar to pre-morbid
    episodes of unrefreshing sleep. Her sleep history was- sheets were
    very disturbed, husband moved to a different bed to avoid being kicked
    at night, the symptoms increased with medication, particularly the
    serotonin re-uptake inhibitors, and she had some additional laboratory
    tests including serum iron, total iron binding capacity and ferratin.
    All of those were abnormal. And it turns out her restless leg syndrome
    was associated with deficient iron stores and appropriate iron
    replacement therapy allowed this lady to get well. So, you know, the
    key obviously here is taking a good history and trying to understand
    the illness rather than just assigning a syndromic diagnosis.

    Now this is another lady who was post-menopausal who had three
    children and her husband was a post office employment, ten months
    prior to that he was a manager at a fast-food job and he lost his job.
    The complaints were fatigue, headache, unrefreshing sleep, muscle
    aches, more malaise- malaise means both fatigue and feeling sick after
    physical and mental activity, and the complaints had been present for
    8 months and had interfered with her activity. So she’d be an ideal
    candidate. The history [?] identify any potential underlying medical
    illnesses. Her BMI was 29, which was high, her glucose was 135, blood
    pressure was high and a psychiatric screener did not identify any
    primary psychiatric diagnosis.

    And so one could work with her and make a working diagnosis of Chronic
    Fatigue Syndrome versus a situational reaction which would be very [?]
    understood. And the query is whether she might be developing diabetes
    or have diabetes type II. A counseling program for the family was
    initiated along with sleep hygiene recommended to the patient, a
    graded exercise program and a diet was started and the patient
    gradually improved.

    Another way of looking at this same lady was that she was told it was
    all in her head and she was depressed. She was given medication for
    sleep and anxiety, she was not on hormone replacement therapies so
    that was a consideration, and that sleep problems became worse and her
    other symptoms did not improve, the medications were changed and
    increased in number. The last course was that she was told she had
    Chronic Fatigue Syndrome and she was to go to bed. Her children were
    left to their own devices, her husband took a second job, her oldest
    daughter who was 16 began with similar symptoms and then she comes to
    see you. So you are the proud recipient of all the mishandling of this
    lady that has taken place in the prior months.
    (44:01)
    And lastly- this is one of my favorite slides, came out when we were
    considering this illness back in the 80's as a chronic mononucleosis
    illness, and so Joan says that she’s pregnant.
    “You mean what?”
    “That’s right, pregnant, so what do you think?”
    “It’s incredible. Maybe you better sit down.”
    “Ok “
    And then on a chair.
    “Maybe it’s mono, did he check for mono? Or God forbid it’s CFS.”
    So anyway the spectrum of illness that’s involved with this problem is
    large, we don’t know why it’s associated more readily in women than it
    is in men, but I think that fatigue is a major complaint in people
    coming to OB/GYN and medicine clinics, and that it’s worthy of looking
    at because of the morbidity involved with it, and I think that, oh,
    you go to the CDC website if you need any more information or look at
    the nice material that Terry[sp?] has provided from the CFIDS
    Associated[sic].

    Ok, I’m ready to take questions if anybody is so moved. Distant sites
    please activate your microphones. We have to have questions from
    somebody- Yes sir.

    [Question]- “Dr. Jones, I’ve been a [?] Over the years I get to see a
    fair number of these patients as independent medical exam because of
    disability and how much it costs insurance carriers and the [?] in
    general. And it’s interesting in the 80's it was chronic fatigue [?]
    epstein-barr virus serologies and it got to the point where they would
    come in with their serologies and I finally got mine done so I could
    show them mine and we got past that and then in the 90's they’d come
    in with tilt-test studies that would show that they were abnormal and
    God knows what else went on. I appreciate- maybe I didn’t say it clear
    enough but is there a single [?] laboratory panel that will tell you
    this is Chronic Fatigue? But what’s more important and you emphasized
    that I think very nicely, is that [?] more things that do cause it and
    I’ve seen a couple of adrenal insufficient patients who have chronic
    fatigue, I saw a [?] patient who had chronic fatigue, I have a [?]
    iron deficient to restless leg syndrome but that is something I’ll
    tuck away. I wondered if anybody ever looked at- took a small section
    of these population of the chronic fatiguers and looked at PET
    scanning?

    [Dr. Jones]- They have. And they’re all over the map, just as they are
    with SPECT scanning. Let me tell you of a study we’re embarking on,
    and that’s with functional magnetic resonance imaging. And the idea
    with this illness is if you take people and look at them at random
    times when they come to clinic or office and you do any type of
    physiologic measurement on them, you don’t know where they are in
    their illness. So back in the late 90's we did a study looking at
    triggering the illness with exercise and measuring a variety of things
    and one of the lab studies that we had been noticing over the years
    was that of complement activation. And so we’ve done a study now
    looking at gene expression with complement activation but the point of
    the diatribe is if you challenge these people with something that is
    associated with their illness, then you can perhaps identify
    physiologic events. So the fMRI study we’re going to be doing- one is
    associated with cognition and we’ll be using a variety of learned
    memory tests, and the second part which we’re involved with
    particularly is doing a challenge, a mentation challenge that induces
    stress. And by doing that we should be able to determine if areas of
    the brain, particularly associated with this interoceptive process
    that I alluded to, is altered in these patients.

    And we know that in individuals who have depression, if you ask them
    to remember how they felt when they were depressed, some will activate
    certain regions of the brain, some will activate other regions of the
    brain. And it so happens that if you activate region A you’re going to
    be very very responsive to medication. If you activate area B, you’re
    going to be very very responsive to Cognitive Behavioral Therapy. So
    this is a top-down approach instead of trying to identify every single
    physiologic thing you can think of as we have been doing to address
    fatigue, but to look in the brain at areas that are going to be
    involved. So we’re going to do something called an N-BACK test which
    you have to remember sequences of numbers that you were given, it’s a
    very highly stressful test. The other thing we’re going to be doing is
    having them read symptoms and complaints that are associated with
    illness. And we know from studies with diabetes, we know from other
    studies that when people do that they activate certain areas of the
    brain. So with these two challenge- or three or four challenge
    situations, we’re going to be able to ask the question are different
    anatomic areas of the brain physiologically involved with problems in
    people with the syndrome rather than simply looking at anatomic areas.
    Now the PET is very good to, I’d like to do PET, but we don’t have a
    PET at Emory, we’re doing these studies in association with Emory. And
    they’re just getting their PET stuff set up, so eventually that will
    be done.
    (50:25)
    [Question]- [?] inject the thought of [?] in the United States, and
    more coming, could chronic fatigue dovetail into Alzheimer’s, has
    anybody looked at that?

    [Dr. Jones]- We’ve looked quite thoroughly at cognitive function, and
    that’s one of the complaints people have, and doing some functional-
    cognitive function testing the only thing we’ve come up with is mental
    fatigue. When you do this- use a computerized set of cognitive
    function tests, people run into trouble during the test, their
    outcomes however are no different than anybody else. So that basic
    problems of- related to illnesses like Alzheimer’s are not present in
    the syndrome. Yes sir.

    [Question]- As a corollary is there any correlation between IQ and [?]
    chronic fatigue.

    [Dr. Jones] No.

    [background] Could you repeat that question?

    [Dr. Jones]- The question was is there a relationship between IQ and
    development of Chronic Fatigue Syndrome, and the answer is no. Yes
    sir.

    [Question]- Is there a severity scale for Chronic Fatigue Syndrome?

    [Dr. Jones]- Using this Empirical method that I described that’s in
    the BMC, BioMedicine, you can apply that but we have not done it in
    terms of outcome or disability etc. Using the SF-36 though the higher
    the scores- well there’s probably a lot of slides I could have shown
    you that I didn’t, but people with this syndrome are more impaired
    than people with coronary heart disease, chronic osteomyelitis and
    COPD and so forth. So that the impairment of people with this scale-
    using that scale is very marked.

    [Question]- I also, this is the first time I’ve really heard that-
    allostatic load, and I can’t help but think about the obesity epidemic
    in the United States and relationship to the fact [?] many of us are
    sleep deprived and there’s interference with our society center and
    serving more and we have greater loads, and I’m wondering- it seems
    like I’m oversimplifying this but just cut down on your calories and
    everything will be good.

    [Dr. Jones]- Well I think you’re right, I think that was very eye
    opening to us and we still are not sure whether or not the illness
    that these folks are experiencing is related to the metabolic or
    allostatic load phenomena or whether it’s related to this syndrome and
    that’s why we have to keep looking at it and that’s why I’m
    particularly interested in this question of interoception, because as
    you know from an infectious disease standpoint when you’re sick with
    an infection your body is telling you to cool it, is to go lay low
    somewhere, and that allows you to use your bodily stores of energy to
    make new proteins to get over the infection, it prevents you from
    becoming the prey if we were still living, you know a millennia ago,
    when we had to do that for sure, the irritability and desire to be
    alone that you express because it lets you rest because other people
    won’t bother you, and it helps the other people because they won’t
    come near you so you can catch what they’ve got.

    So there are a lot of different reasons for illness behavior, and if
    you look at this syndrome it’s illness behavior, and it was illness
    behavior originally identified with a question of chronic infection or
    chronic immune stimulation. I mean back in the early 80's when we were
    seeing these people, and Steve Straus at the NIH was seeing these
    people and we unfortunately wrote those papers in the [?] that
    suggested this was a chronic active- mono infection, that’s why Dr.
    McKeller is still seeing people bringing in EBV titres. I do, I get
    those phone calls all the time. There are docs out there who still
    think that- who don’t know that it’s normal to have- The other thing
    that’s new in terms of EBV is, and this was studies done in the UK and
    Australia, is that 10% of people with primary mononucleosis, infection
    with a virus called Ross-River virus, which is unique to Australia,
    and then Q-fever, which is a rickettsial disease, 10% of people with
    those illnesses will have a post-infection fatigue syndrome that
    cannot be differentiated from Chronic Fatigue Syndrome. And this might
    be why the early days of this we’re seeing people in clinic in terms
    of a post-infection illness. And then it gets right back into the
    heart of why do you feel sick when you’re sick? And these people allow
    an opportunity to ask that question. Yes sir.
    (55:52)
    [Question]- [?] the psychiatric, psychological aspects of it and [?]
    together with a true Chronic Fatigue Syndrome, but I’m struck with
    some though who I really thought had chronic fatigue, they could tell
    me exactly the day it happened.
    [Dr. Jones]- Right.
    [Question cont.]- And it was like they know exactly when something
    changed and it was different in their life.
    [Dr. Jones]- That’s correct.
    [Question cont.] And you kind of gave us the feeling that it was a
    chronic process, clearly it is, but how often is it abruptly
    onsetting?

    [Dr. Jones]- Well about- if you go into the physician office/clinic
    population, about 75% of people say it’s acute. If you go into the
    population that we do, where you just call up people and ask them,
    then it’s about 25%. So we’re- we may be looking at apples and oranges
    when we compare population studies to clinic studies. And I think that
    the thing about wanting to know about it as soon as possible is that
    early intervention can likely prevent the- you know, the impact of the
    illness and the education of the patient that they’re ill. And I think
    that’s why we try and do these education sessions, because it doesn’t
    really matter why it started, it matters that it’s there and then you
    can intervene early and try and prevent it from being a lifelong
    problem.

    Any house officer questions? Student questions? Do you see these
    people in your clinics? What do you do with them?

    [off microphone discussion, endometriosis mentioned]

    [Dr. Jones]- Well that’s not- abdominal pain is not one of the
    components of the syndrome, thank goodness, although we saw a number
    of people over the years who did have polycystic ovarian disease who
    fit this definition very nicely.

    [Question]- Jim I think one of the things you touched on very nicely
    was the fact that you have to be optimistic in this disease and you
    might not have said it but you inferred it that you can’t have a
    patient who you initially just automatically call them chronic fatigue
    because that’s sort of like giving them a lifelong kind of a bad
    disease process and I think if there’s anything we have to offer these
    people it’s a strong teacher of optimism. And get them into that
    graded exercise program that you’re talking about.

    [Dr. Jones]- Well I think you’re right. And one of the other talks I
    have to give this week somewhere else I go into that in great detail,
    in that- I mean it- by identifying someone with this, number one
    you’re simply making a working diagnosis. You’re identifying people
    who need certain types of intervention and who need a good thorough
    history and evaluation. And if you see someone in clinic for the first
    time with this and they’re allotted a half an hour, you’re not going
    to get anywhere at all. So you need to identify someone who probably
    fits into the category, but then they need to be re-evaluated and then
    they need to be educated so that they can be treated properly. And
    there are several studies- that like I said, to show that Cognitive
    Behavioral Therapy is very very helpful in this illness.

    [Off microphone speaker]- Thank you very much for a fine presentation.

    [Dr. Jones]- Thank you.

    [Applause]

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  4. RunningAntelope

    RunningAntelope New Member

    Thanks for the head's up Quayman. Curiously, both my now wife (who acquired this illness from myself) and I solicited the help of Dr. Jones back when he was at National Jewish in Denver. Among the studies performed, he did a sleep test and a tilt table. Both were abnormal, though my official "diagnosis" was neurally mediated hypotension (NMH), for which he prescribed first florinef, and then, midodrine.

    My wife, who had visited several "specialists" prior to Dr. Jones and had maintained an IMMACULATE diet/sleep regimen in the few years prior to seeing him finally got her postural orthostatic hypotension (POTS) under control with the help of Dr. Jones on midodrine. After weaning off the medication, she got pregnant, twice within 18 months, and that seemed to "seal the deal." So, those comments from Jones about hormonal repercussions are intriguing. Perhaps more importantly, pregancy, according to Dr. Cheney, is like a natural transfusion of stem cells and their associated "cell-signaling factors," which may interact with the hormonal cascade. For me, Dr. Jones, unfortunately, was useless and ambiguous and ended up referring me to a cardiologist who referred me to a specialist in cardio-electrophysiology. Again, fruitless.

    Here's what interests me, having read the article. I do intuitively feel that psycho-social stress may "set the bar low" for predisposition to this illness. My wife was "abused" by a relative as a child and grew up without a father, who was mentally and physically abusive himself in the early years. Moreover, she was studying for the bar exam (stress) when she first became ill with that "fever that just won't go away" and forever alters your existence. But, until she was intimately exposed to me, she was otherwise in good health, active, and ambitious. Her opinion, and I believe it's an accurate one, is that both stress (environmental, psycho-social, or otherwise) AND a (THE) pathogen must be involved to initiate this illness.

    As for me, there's no doubt in my mind that a pathogen (virus) is at the heart of this, whatever your other risk factors. My immune suppression was so severe to the extent that depression or stress or environmental toxicity could not explain away the magnitude. It's an almost AIDS-like suppression. Where I feel Jones and the CDC are either off base or waffling is this subjectivity in trying to identify a patient cohort and establish an objective set of criteria by which to define and treat this illness. Dr. Cheney was finding AIDS-like and MS-like abnormalities on the MRIs some 25 years ago. Just as he was trying to treat with anti-virals 25 years ago. Again, way ahead of his peers who are now getting recognized (Lerner, Montoya, et al).

    Speaking of Dr. Cheney, and here's the biggie, he actually has a DIAGNOSTIC tool to assess not only whether you actually have CFIDS, but the extent of it as well. His echo terrain map contains no exceptions and is statistically significant. Another problem I have with the CDC case definition and Jones is the notion that CBT and graded exercise are helpful. Maybe they are for a subset, but if you truly have my CFIDS or ME, CBT is fruitless, and aerobic exercise is counterproductive and even contraindicated, particularly for an already ailing heart and a body trapped in a vicious reactive oxygen species-perpetuating state. Attempting to "keep active" at a low level (certainly relative to what I had been accustomed to) is what put the nail in the coffin for me. That's not to say that mind/body work doesn't have some utility, but it's being "overplayed" in this analysis in my opinion, both based on what I've observed, heard, and experienced firsthand. As my wife explained so elegantly in reflection, you cannot PHYSICALLY respond appropriately to stress with this illness, particularly in the early stages. It's not an attitudinal choice, which is consistent with Dr. Cheney's notion that the hypothalamus-pituitary-adrenal (HPA) axis is "reversed" as a DEFENSIVE, COMPENSATORY mechanism to keep you functioning even at a low level. That's not to say that stress reduction and spiritual work and learning the "lessons of the disease" aren't important because they ARE.

    Again, genetic polymorphisms, stress, and environmental toxicity (a large part of which are the crappy, processed diets we all ate "growing up) may all provide fertile ground for exploitation by a pathogen, but I truly believe that a pathogen (virus) is the initiating event and why 75% of the genuine cases can tell you exactly when their illness started, that it was "flu-like," and never really went into submission. In other words, we are NOT doing this to ourselves. Maybe some are, but that's probably a different disease cohort. Now, are we somehow perpetuating the illness, once put into physical submission by not taking the correct environmental/food/stress reduction/sleep/mind-body approaches because we feel energetically deprived? That remains an open question.

    Bill.




    [This Message was Edited on 09/20/2009]
    [This Message was Edited on 09/20/2009]
    [This Message was Edited on 09/20/2009]
  5. AuntTammie

    AuntTammie New Member

    thanks for posting all this.....we so seriously need to get the darn cdc to butt out
  6. skeptik2

    skeptik2 Member

    Wish you had broken up some of those paragraphs, tho', LOL, I am blinded by
    all that black!

    Anyhow, I agree with everything you said. It's no coincidence I, my grdau and
    my partner all got sick because of my VIRAL illness. We all 3 live together now,
    and thank god we do, as we support and understand one another, which so many
    don't have.

    I don't give a hoot how we had stressors; none of us was sexually abused as kids.
    Doesn't everyone have stressors, eat junk food, have relationship problems, family
    dramas and traumas? Is everyone sick?

    Thanks for the good input...

    skeptik2
  7. QuayMan

    QuayMan Member

    (From Co-Cure)

    It's seems that the CDC has figured this disease out. How else to explain their absence at
    the 3-day CAA/NIH sponsored brainstorming session recently held at Cold
    Harbor ("From Infection to Neurometabolism: a Nexus for CFS"). Thirty researchers from
    across the US and Canada were there but not one showed up from the biggest CFS
    team- not one.

    This wasn't how it was supposed to be....

    Check it out in 'CDC Grows More Isolated' from 'Bringing the Heat' - A blog
    from Phoenix Rising.

    http://aboutmecfs.org/blog/?p=885
  8. QuayMan

    QuayMan Member

    As I recall, in the 90s, before he worked for the CDC, James Jones said something to the effect that if children don't get better from CFS in two years, the problem was psychological/psychiatric.

    Another person told me at the 1995 CFSCC meeting (that was the committee before the CFSAC), he said that CFS was caused in children by the parents i.e. Munchhausen's Syndrome by Proxy
  9. QuayMan

    QuayMan Member

    Thanks RunningAntelope.

    Very interesting to hear people who have attended JJ. If you've any other observations, or if others do, please share them. Bill Reeves and him have a budget of millions to spend each year on CFS - for other illnesses, that might not be much but not much ME/CFS research is being funded by governments and not much money is being raised privately around the world. So it's big money.

    I think the point you make about infections is a good one. The CDC have looked at acute onset before and found that it was more associated with infections. And with the new definition as I recall, the percentage with an acute onset has dropped drastically.

    Of course, it actually took me a while to realise that I did have an acute onset of a sort, if that makes sense. I had an infection and then wasn't able to rest on a school trip. When I came back after I took a few days off from my "cold"/flu, anytime I played sports, I had muscle pains. So after I while I gave up sports. And was able to struggle on. So after a while, I started putting my symptoms down to other things, like my muscle problems meaning I couldn't play sports anymore (so I thought I had simply got unfit and needed to be very fit to have lots of energy).

    Before that event, I was practicising or playing one sport or another 10 times a week, so there was a clear difference in what I could do before or after.

    With the new empirical definition, it seems to get a lot of people getting diagnosed are just very overweight, often somewhat depressed.

    Looking for anything in this group isn't the way to do research on CFS, I think. But JJ is happy to go along with it.
    [This Message was Edited on 09/22/2009]
  10. QuayMan

    QuayMan Member

    (From Co-Cure)

    Tate Mitchell did us all a great service by doing a transcript for the
    following lecture:


    Monday, April 23, 2007
    OB/GYN Grand Rounds
    ‘Chronic Fatigue Syndrome in Women’
    James F. Jones, MD, CDC
    speaking at the Univ. of Arizona Health Sciences
    [ [?] indicates difficulty transcribing]
    http://streaming.biocom.arizona.edu/people/?id=11525


    The transcript is at:
    http://tinyurl.com/jamesjonesoncfs
    i.e.
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0909A&L=CO-CURE&P=R3247&I=-3


    For anyone who is put off by the length (8103 words), I've taken out some
    extracts (1073 words) which give an idea about Dr Jones' views on the
    illness and where he sees the (CDC's) research going. The first part of the
    talk in particular, he doesn't really give his views.


    Dr. Jones is Dr. Bill Reeves' number 2 in the CFS program in the CDC, which
    has a budget of millions of dollars each year. The CDC CFS program also
    extra importance because of the CDC's status: what the CDC says on the
    illness is taken more seriously than what a random individual clinician or
    researcher says on the illness. It might seem a bit old but it is about the
    last talk we have access to I believe.


    Tom Kindlon


    ============================

    "So the gender issue goes back- this goes back to the stress study by
    Christine Heim based on our Wichita data, and it demonstrates that
    both sexual abuse and emotional neglect are really critical in
    childhood in developing later on the Chronic Fatigue Syndrome. So
    gender probably is terribly important."

    --

    "So coming up with values above this when we looked at our patients in
    our population study, it turned out that the odds ratio for CFS was
    quite different between females and males, particularly with high
    allostatic load variables. The odds ratio was 5 ½ if the allostatic
    index was greater than 6 in females, it was 2.3 in males, but- in
    other words when we do our population studies and we look for illness
    and Chronic Fatigue Syndrome, are we really measuring a syndrome or
    are we simply measuring- studying individuals who have had marked
    accumulated life stress and are developing the illnesses that one
    develops when you’re 50 years of age or more?"

    --

    [Slide: Comorbid conditions: Fibromyalgia, Gulf War Illness, Irritable Bowel
    Syndrome, Orthostatic Instability, Multiple Chemical Sensitivity, TMJ,
    Somatoform disorders, Anxiety disorders]

    "and there are a variety of co-morbid conditions that are not excluded.
    Fibromyalgia is not exclusionary and as this list goes on. And one can
    also wonder whether these illnesses also have to do with alterations-
    cumulative alterations in monitoring bodily processes and that this is
    really an illness of interoception, or an alteration in your
    self-perception."

    --

    "The two most common effective, documented therapies are graded
    exercise and some type of cognitive behavioral therapy- CBT. Graded
    exercise means that if you’re not doing anything, you start doing
    something in a very low level. You don’t automatically go to the PT
    and get put into an hour program. You start walking for 5 minutes, and
    when you can walk for 5 minutes every day for a week and not feel
    tired, you go to 7 minutes. So it’s really an extraordinarily slow
    program. But in essence you’re training the individual and they’re
    training themself that being physically active is ok and that lying on
    the couch is not ok. And likewise the formal Cognitive Behavioral
    Therapy teaches them about the illness, teaches them how they need to
    alter their behavior, and it has been shown to be very helpful."

    "And I think here
    are some management resources that will be made available regarding
    the Cognitive Behavioral Therapy, this was a meta-analysis in JAMA in
    2001 which was very good, and then the efficacy of graded exercise."

    --
    Case History (TK: other case history wasn't CFS - she just needed more
    iron):

    Now this is another lady who was post-menopausal who had three
    children and her husband was a post office employment, ten months
    prior to that he was a manager at a fast-food job and he lost his job.
    The complaints were fatigue, headache, unrefreshing sleep, muscle
    aches, more malaise- malaise means both fatigue and feeling sick after
    physical and mental activity, and the complaints had been present for
    8 months and had interfered with her activity.

    So she’d be an ideal candidate.

    The history [?] identify any potential underlying medical
    illnesses. Her BMI was 29, which was high, her glucose was 135, blood
    pressure was high and a psychiatric screener did not identify any
    primary psychiatric diagnosis.

    And so one could work with her and make a working diagnosis of Chronic
    Fatigue Syndrome versus a situational reaction which would be very readibly
    understood. And the query is whether she might be developing diabetes
    or have diabetes type II.

    Course a

    A counseling program for the family was
    initiated along with sleep hygiene recommended to the patient, a
    graded exercise program and a diet was started and the patient
    gradually improved.

    Course b

    Another way of looking at this same lady was if she was told it was
    all in her head and she was depressed. She was given medication for
    sleep and anxiety, she was not on hormone replacement therapies so
    that was a consideration, and that sleep problems became worse and her
    other symptoms did not improve, the medications were changed and
    increased in number.

    Course c

    The last course was that she was told she had
    Chronic Fatigue Syndrome and she was to go to bed. Her children were
    left to their own devices, her husband took a second job, her oldest
    daughter who was 16 began with similar symptoms and then she comes to
    see you. So you are the proud recipient of all the mishandling of this
    lady that has taken place in the prior months.

    [TK: So he is giving the impression that one giving a diagnosis all sorts of
    problems - course c]

    ---

    [Question] I wondered if anybody ever looked at- took a small section
    of these population of the chronic fatiguers and looked at PET
    scanning?

    [Dr. Jones]- They have. And they’re all over the map, just as they are
    with SPECT scanning.
    [TK: I presume what he is saying is the results aren't consistent]

    ---

    So the fMRI study we’re going to be doing- one is
    associated with cognition and we’ll be using a variety of learned
    memory tests, and the second part which we’re involved with
    particularly is doing a challenge, a mentation challenge that induces
    stress. And by doing that we should be able to determine if areas of
    the brain, particularly associated with this interoceptive process
    that I alluded to, is altered in these patients.

    --

    So we’re going to do something called an N-BACK test which
    you have to remember sequences of numbers that you were given, it’s a
    very highly stressful test. The other thing we’re going to be doing is
    having them read symptoms and complaints that are associated with
    illness. And we know from studies with diabetes, we know from other
    studies that when people do that they activate certain areas of the
    brain.

    --

    [Question]- I also, this is the first time I’ve really heard that-
    allostatic load, and I can’t help but think about the obesity epidemic
    in the United States and relationship to the fact [?] many of us are
    sleep deprived and there’s interference with our society center and
    serving more and we have greater loads, and I’m wondering- it seems
    like I’m oversimplifying this but just cut down on your calories and
    everything will be good.

    [Dr. Jones]- Well I think you’re right (etc)
  11. Khalyal

    Khalyal New Member

    Thanks for posting this Quayman. When a virologist suddenly starts pioneering papers on allostatic stress load, it's a very thinly veiled smirky sneer. He's been working on calling CFS an allostatic load syndrome since 2006.
  12. sascha

    sascha Member


    on what's going on "out there" with prevalent views on cfids among certain practitioners.

    thanks, Bill, for thoughtful and articulate post.

    we're in the midst of gnarly dialogue over what's what with this disease- Cheney has the upper hand, i'd say, for sure. but we never are to rule out what might be going on with altered perceptions caused by the condition- that might certainly be playing a part, BUT putting all the eggs in that particular basket and not admitting any other explanations, not advancing the cause through other potential research and discoveries shows a limited vision- is too simplistic.

    cfids is complex and needs continued all-inclusive studies- which is apparently not the CDC way. Sascha

    *thank you sooo much for this post. helps keep us informed of the big picture.
  13. QuayMan

    QuayMan Member

  14. QuayMan

    QuayMan Member

  15. QuayMan

    QuayMan Member

    Response to Reeves and Jones - Gurli Bagnall - October 9th, 2009

    PROVE IT!
    By
    Gurli Bagnall

    http://www.meactionuk.org.uk/prove-it.htm
  16. QuayMan

    QuayMan Member