Friday, August 17, 2007

Live Chat with Dr. Jason

Thanks to Steve for getting the complete text for me while my computer is giving me fits!

ME/CFS -Q&A Dr. Leonard A. Jason, PhD

Live Chat Q&A with Chronic Fatigue Syndrome Research and Policy Leader Dr. Leonard A. Jason, PhD


Welcome to our Live Chat Event with Dr. Leonard A. Jason, PhD - a clinical & community psychologist, and a prolific ME-CFS researcher.

As head of the Center for Community Research at DePaul
University since 2000, Dr. Jason has several different
ME-CFS studies going on at any one time.
Community-based research is his specialty, with a focus
on defining "the true face" of CFS and other 'controversial' illnesses.

As a new member of the federal government's CFS
Advisory Committee - and vice president of the
science-focused International Association for CFS/ME -
Dr. Jason is deeply involved in the debate on research
policy, standards of care, and diagnostic criteria. And as a
dedicated member of the CFS Name Change Advisory
Board, he has strong views on the need for a name

* * * *

Q: Dr. Jason, based on your patient surveys and other research
to describe functioning in CFS patients, how ill are people with
this illness, Chronic Fatigue Syndrome?

Dr. Jason: Patients with CFS are more functionally impaired
than those suffering from type II diabetes mellitus, congestive
heart failure, multiple sclerosis, and end-stage renal disease.

* * * *

Q: What are the costs of this illness?

Dr. Jason: Based on data that our group presented at the last
IACFS/ME conference in Florida, the total direct and indirect
costs due to CFS range from $18.7 billion to $24.0 billion a

* * * *

Q: I assume those are estimated U.S. costs. Can Canadian or
European costs be extrapolated?

Dr. Jason: Yes, that is possible, but one would need to figure
out the exact population, and then a multiple factor. However,
you can clearly see that this is a major cost to our society, and
not enough is being done to help the hundreds of thousands who
are ill with this illness.

* * * *

Q: Is it true that a particularly high percentage of patients with
ME-CFS have experienced disrespectful treatment by the
healthcare system?

Dr. Jason: Research has found that up to 95% of individuals
seeking medical treatment for ME-CFS reported feelings of
estrangement - and one study found that 66% of individuals with
ME-CFS believed that they were made worse by their doctors'

* * * *

Q: Do you think that health care professionals continue to doubt
the scientific validity of this diagnosis?

Dr. Jason: Yes, and the name selected to characterize an
illness, such as 'Chronic Fatigue Syndrome,' can influence how
patients are perceived and ultimately treated by medical
personnel, family members, and work associates. Our research
has found that the negative stigma associated with CFS may be
partially due to the trivializing name that was given to this
disorder in 1988.

* * * *

Q: Several investigators have suggested that the central
problem with patients experiencing CFS is a psychosomatic
preoccupation with one's fatigue. What is your view on this?

Dr. Jason: Our work could not find any support for this model,
and we have challenged that work in a recently published article.
[See for example "A population-based study of Chronic Fatigue
Syndrome experienced in differing patient groups: An effort to
replicate Vercoulen et al.'s model of CFS.": ]

* * * *

Q: Is there any medical data that suggests someone with CFS
has a greater likelihood of developing cancer and/or some other
life-threatening condition?

Dr. Jason: Several studies have now occurred on this critically
important issue with different outcomes. I was connected with a
study indicating that there were some very serious outcomes
and my study is in the literature. However, what is needed are
natural course studies of patients over time. That will answer this
critical question.
[See for example "Causes of death among patients with Chronic
Fatigue Syndrome." : ]

* * * *

Q: I was in the CFS DePaul Study in 2004. Are there any
published research articles on this study yet?

Dr. Jason: We are just sending the papers out to journals, so
will have to wait a few more months until they are accepted and
published. As you know, if we publicly release findings before
publication we can jeopardize the journals' being willing to
publish our articles. But I do think the findings will be of
importance to the field. Thank you for helping out our efforts.

* * * *

Q: What do you think of the new CDC estimates of CFS
prevalence? [Increased in 2006 to 4 million people in the U.S.
( ), compared with an
estimated 900,000 to 1 million previously.]

Dr. Jason: The crux of the issue has to do with two methods to
determine the prevalence rate being used at the same time with
a group of individuals in Wichita, Kansas. One traditional
method that has been used for the past decade found 16 cases
of ME-CFS, and the other, newer, CDC empirical method found
43 cases. The new method has found about 3 times as many
cases, and that is the issue that needs to be closely examined. I
believe that expanded criteria are the reason for the new CDC
estimates of there being 4 million people in the U.S. with this

* * * *

Q: Do you think that the criteria used by the CDC to determine
the prevalence of CFS in their recent Georgia study ( )
are better than previous ones, or are they too broad?

[Note: This study "estimated 2.54% of the Georgia population
suffers from CFS, which is 6- to 10-fold higher than previous
population-based estimates in other areas."]

Dr. Jason: About 4% of the population has 6 or more months of
fatigue, but there are many reasons for this - many of these
people do not have ME-CFS. So, the breadth of the criteria will
have enormous implications for research and treatment, in my
opinion. If most of those 4% are included, I feel that we are
broadening the criteria and this will make it more difficult to find
biological markers for this illness.

* * * *

Q: Why all the debate about prevalence rate?

Dr. Jason: For an important reason. Accurate measurement
and classification of illnesses such as ME/CFS, FMS, and IBS
is imperative when evaluating the diagnostic validity of these
controversial illnesses.

Measurement that fails to capture the unique characteristics of
these illnesses might inaccurately conclude that only distress
and unwellness characterize these illnesses, thus inappropriately
supporting a unitary hypothetical construct called "functional
somatic syndromes." In the end, using a broad or narrow
definition of ME-CFS will have important influences - on
ME-CFS epidemiologic findings, on rates of psychiatric
comorbidity, and ultimately, as I said, on the likelihood of finding
biological markers.

* * * *

Q: Isn't there a new case definition from Canada?

Dr. Jason: A new ME-CFS clinical case definition was
developed in Canada that used the term 'Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome' (ME-CFS) (See
Carruthers, et al., 2003: ). In one of our
studies, we found that the Canadian criteria selected patients
with less psychiatric co-morbidity, more physical functional
impairment, and more fatigue/weakness, neuropsychiatric, and
neurological symptoms.

* * * *

Q: Why won't the CDC accept the Canadian definition?

Dr. Jason: An excellent question.
Right now there has not been
too much research on this case definition. However, more
research is needed, and once that occurs, we will be able to find
a more homogeneous group of patients. You might want to pose
this question to the CDC.

* * * *

Q: Dr. Jason, have you noticed any one common denominator in
adults who develop CFS?

Dr. Jason: If you were to ask that for cancer, you would
probably find dozens of reasons that a person might develop it. I
believe that there are different types of what we think of as
ME-CFS, and subgroups will help us better understand them.

* * * *

Q: Are you in favor of 'subtyping' in CFS research - and if so,

Dr. Jason: The identification of clinically significant subgroups
is the logical next step in furthering ME-CFS research. There
might be multiple pathways leading to the cause and
maintenance of the neurobiologic disregulations and other
symptoms experienced by individuals with ME-CFS. Depending
upon the individual and subtype, these may include unique
biological, genetic, neurological, and socioenvironmental

Subgrouping is the key to understanding how ME/CFS begins,
how it is maintained, how medical and psychological variables
influence its course, and in the best case, how it can be
prevented, treated, and cured. I have a paper on this that was
published, and it goes into much more detail.
[See "Exploratory subgrouping in CFS: Infectious, inflammatory,
and other":

* * * *

Q: What is the status of the campaign to change the name of
CFS in the U.S.?

Dr. Jason: Much activity is going on, and you will be hearing
more about that in the coming months. There is an effort to try to
bring different groups together on this issue, but as you might
imagine, it is a challenging task.

* * * *

Q: In your opinion, what is a better term for CFS - Myalgic
Encephalopathy or Myalgic Encephalomyelitis?

Dr. Jason: A very good question. Years ago, I was in favor of
the former term, but I am now convinced the latter term is more
appropriate, for multiple reasons. Problem is that the scientific
community has not supported this version, so I tend to just say
"ME-CFS" - and getting folks to even use that acronym is a vast

* * * *

Q: Aren't you concerned that changing the name to "ME-CFS"
will dilute the original definition (Ramsay, et al.) of Myalgic
Encephalomyelitis and result in even less research into ME?

Dr. Jason: Another very good question. Yes, I am concerned
about this, and it is the reason I feel it is so important to be
thinking of the ME-CFS Canadian criteria, which try to
operationalize a very different way of thinking about diagnosing
people with this illness.

* * * *

Q: Was there a recent name change to the scientific
organization for CFS?

Dr. Jason: The organization of researchers - called the
International Association of CFS - changed their name to the
International Association of CFS/ME - the IACFS/ME. You can
find the link to this organization at

* * * *

Q: Didn't the IACFS/ME recently publish a pediatric case
definition of "ME/CFS"?

Dr. Jason: Yes. In the past, kids with this illness were
inappropriately diagnosed with an adult case definition.
Recently, I served as the chair of an international task force, and
published guidelines for a new case definition for children and
adolescents - with the name Pediatric ME/CFS. We based our
criteria on the work done by those who created the Canadian
ME/CFS criteria. [See "A Pediatric Case Definition for ME and
CFS" at the IACFS/ME website: ]

* * * *

Q: What is the Chronic Fatigue Syndrome Advisory Committee?

Dr. Jason: The U.S. Department of Health and Human Services
assigned this committee (the CFSAC) the task of monitoring
CFS activities within the federal government and making
recommendations on CFS policy change to the Secretary of the
Department of Health and Human Services. I was recently
appointed to this committee. I have been asked to chair the
Research Sub-Committee as well.

* * * *

Q: How does CFS research money compare to research money
for other serious debilitating illnesses that affect similar numbers
of people?

Dr. Jason: I believe that the funding is low
- and we need to
figure out ways to increase the number of research proposals
that get submitted to NIH. We also need to find ways to increase
the overall amount of money that is available for ME-CFS
research. Efforts are now occurring at NIH to try to encourage a
new generation of researchers to get involved. (A CFS
Research Funding Opportunity Workshop on this topic is
planned for September 17, 2007 in the Washington, DC, area: )

* * * *

Q: Are big pharmaceutical companies trying to develop
medications to treat or cure CFS?

Dr. Jason: Not enough time and effort has been put into this, and
we need more of these companies to get involved in testing out
literally dozens of promising products.

* * * *

Q: Dr. Jason, what would you say is the single most important
thing for a patient to do or focus on when a really bad flare-up

Dr. Jason: Several things might be considered. First, one might
try to understand why it occurred - and that might then result in
the person finding ways of reducing this occurring in the future.
As an example, a person might work to reduce
over-expenditures of energy, and this might involve getting back
into what I call an "energy envelope." During these difficult times,
it is also important to stay connected to people you love, as
social support is critical in all phases of this illness.

* * * *

Q: What type of approach to treating CFS do you support?

Dr. Jason: The Envelope Theory, for example, recommends
that patients with ME-CFS pace their activity according to their
available energy resources. In this approach, the phrase,
"staying within the envelope," is used to designate a comfortable
range of energy expenditure, in which an individual avoids both
over-exertion and under-exertion, maintaining an optimal level of
activity over time. The Envelope Theory would not endorse
recommendations to either unilaterally increase or decrease
activity. The key is to not over-expend their energy supplies or
consistently go outside their "envelope" of available energy.

Rather than a cure, this approach focuses on improving the
ability of patients to cope with this illness, and tailored
interventions are needed for the unique needs of different
subgroups of patients.

* * * *

Q: I would like to applaud you on the Flexible Study Program at
DePaul University for individuals with CFS, FM, and other
chronic illnesses. ( )
I truly hope this leads the way for other universities to follow suit.
It is long needed.

Dr. Jason: You should thank Lynn Royster, PhD, who has
created this program at the School for New Learning, and I
would encourage you all to take a look at this wonderful way of
extending an education to people who are not able to get to
classes in a traditional way.

.And thank you all for such stimulating questions. I hope that I
have been able to provide some helpful ideas in the last hour.

Closing Chat Remark:

Thank you for giving us your time, Dr. Jason. Please keep up the
excellent work!

ProHealth also wishes to thank Dr. Jason - and all the patients,
researchers, and advocates who participated so generously in
this Live Chat Event. Hopefully the information exchanged here
will help advance the work to find a cause and a cure.

Thursday, August 16, 2007

Latest News from One Click


1.  CDC Suppresses CFS Data.
One Click publishes today the CDC machinations over data suppression in relation to the Chronic Fatigue Syndrome epidemiological study in Georgia, USA, orchestrated by William Reeves et al of the CDC. The CDC 'Off Center' report prepared by the United States Senate Subcommittee on General Financial Management announced in June that the CDC "tasked with fighting and preventing disease has spent hundreds of millions of tax dollars for failed prevention efforts, international junkets, and lavish facilities, but cannot demonstrate it is controlling disease." It also cannot demonstrate that it is effectively and ethically keeping the very people who pay for its existence informed.  The more controversial the data highlighting CDC bias and incompetence, the more the stonewalling goes on.  Shame on the USA for medical data suppression.

Monday, August 13, 2007


There has been some discussion in comments to this blog about paranoia. Paranoia is defined as being an unreasonable fear, not based in fact. When there are facts to support the claims, it’s not paranoia.

On the other hand, there are those who ignore facts.

Case in point: a member of an e-group who suspects that any disabled person who has joined that group since I left is me (never mind that the topic of the group is of special interest to the disabled). As "evidence", she points out that two of us posted to related groups at the same time; but her assertion requires that she (and her readers) ignore the evidence that we were posting from different IP numbers. If you have only one phone line and no DSL/cable connection, it is impossible to have two IP numbers simultaneously, and that’s an indisputable fact. But don’t confuse her with facts, her mind is already made up.

She’ll make up whatever "facts" she needs to fill the holes in her case, including asserting that I wanted to replace the doctors’ proven treatment with an unproven one, when, to the contrary, the research shows the treatment they offered is useless for CFS and the treatment I requested is what’s recommended by the experts. She knows her readers are highly unlikely to read the research reports for proof that what I wanted is not dangerous or experimental; in fact, the consulting specialist asked years later "what would it have hurt?" to give me what I asked for to see if that helped. It’s FDA-approved for one of my symptoms and millions of people (including many CFS patients) take it; several years later, I finally got a prescription for it, and it did help.

The poster in the comments here similarly assumed what was necessary to build her case, rather than asking questions that would elicit the actual facts that would prove her assumption was wrong. I was repeatedly strung along with empty promises to ensure I missed deadlines, and because I trusted my doctors to eventually do the right thing when I’d proven that their first instinct didn’t help, I didn’t suspect anything until it was too late to meet those deadlines.

One fact the accusers would like to deny is that I have the documents, including sworn statements by my doctors, that support my statements that doctors refused to accept prior expert diagnoses, didn’t know what they were doing, falsified medical records, and left me more disabled through their refusal to advise me that I would be better off with another doctor. The evidence is there for anyone who’d like to see it for themselves.

Nor is it suspicious that I had trouble with a number of doctors. Statistically, nearly 4-in-5 CFS patients report problems with disbelieving and incompetent doctors. Moreover, all the doctors I had problems with were in the same medical group, and many were a professor and his students. If the professor teaches his students the wrong approach to a disease, it is to be expected that the students would make the same detrimental recommendations; how would the student know any better?

The fact is, I’ve since talked to the head of the second CFS support group in town, which I only found out about afterward, and been told that every patient who’s been to that medical group has reported the same problems I had with them. Unfortunately, I made a decision based on the facts available to me in Fall 2000, and can’t turn back the clock to factor in the new information that they are known to be incompetent in dealing with CFS. If I could, I’d be able to get the proper treatment early enough to get me back to work in a few months, and you wouldn’t be reading this blog, but the specialist tells me the damage is permanent.

The fact is, the California legislature enacted a new law telling doctors to keep up with new developments; obviously, I’m not the only patient in California who dealt with doctors who had no clue that new research proved the old treatment they were using is useless.

The fact is, the CFS community (via Hillary Johnson, author of Osler’s Web) has the government documents (via FOIA request) supporting our assertions of misfeasance, malfeasance and nonfeasance by government agencies. "On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic." This is not a paranoid fantasy of a group of patient-activists, but based on the government’s own memos.

Yes, for the sake of brevity what I write in support of my claims is often conclusory statements, but in my files I have the doctors’ own words proving the conclusion is fact-based. If anyone would like to read the thousands of pages of documents supporting my statements, they’re welcome to them. They prove, beyond a doubt, that I’m telling the truth that the problem is in the doctors’ heads, not mine. If the problem were truly paranoia, I wouldn’t be so open about offering copies to anyone who wants to see the proof, because the proof wouldn’t actually exist.

Someone reading only those doctors’ typed notes would get quite a different picture of my medical condition from someone who also read the lengthy forms I filled out for the doctors, my diaries, the lab reports, the handwritten notes from those appointments (i.e., before the doctor had the chance to think about how to edit my statements to say what he wanted them to), the outside medical records, and the testimony of friends/eyewitnesses/experts who have no incentive to lie. The next specialist read the medical records and was horrified: he could not fathom that with the pain level noted they provided no pain medication at all. He commented on it without prompting; yet one more person who sees in the records what I saw when I finally read them, and told me he saw malpractice. Another doctor asked "are they trying to kill you?", then answered his own question, "because you’re single, your malpractice claim would die with you" so it would be in their best interest to get rid of me.

Look at the timeline for proof that one doctor is lying. Although I had a perfectly good computer that handled my e-mail and personal word processing needs, I bought a new computer that ran the newest software so I could open other people’s files, started my own business, then partnered in a friend’s internet business, yet the doctor I saw two weeks after paying a substantial sum for website hosting and one week after accepting a large research project testified under oath that I had told him in no uncertain terms that I didn’t want to work ever again. It makes absolutely no sense that I’d be involved in two businesses, contract for a large project, and invest thousands of dollars in equipment, software and advertising, if my goal was to not work "ever again". Who’s lying? Obviously, the person who says I don’t want to work, because I’ve been working steadily ever since. But every time I tried to tell him that I was having serious difficulty doing my work, he interrupted; he clearly didn’t want to hear his assumption was wrong.

There’s not one word written in the file that supports the claim that I said I "don’t want to work ever again", yet years later, he was absolutely positive that’s what I told him; like so many other things, what I said was turned around in his head until he found a version that fit his assumptions. Repeat a lie often enough, and you come to believe it’s true, so he "remembers" something I never said, even without a written note to jog his memory. Or you can get a copy of the expensive advertisement I placed while I was his patient, which proves that for the next six months, there was a weekly announcement to thousands of lawyers and businesspeople of my availability to work; a few months later, I placed an ad in a different monthly publication, proving which of us is lying about my feelings toward working. My ads put my money where my mouth is; he can’t point to anything other than his own false memory to support his version. If I’d actually said it, he should’ve put the exact quote in his records so he could quote it to the judge, and not waited till 5 years later to "remember" it. Actions speak louder than words, and my actions show I was trying to work even at the time he said I told him I didn’t want to.

For 20 years, the trained counselors have been unanimous, that the "symptoms of depression" noted by my doctors playing Amateur Psychologist are those symptoms which would be seen with flu or other physical illness, and the professionals have refused to make the same diagnosis as the amateurs. For a proper diagnosis of depression, there has to be an emotional component: feelings of worthlessness or hopelessness, low self-esteem, suicidal ideation, crying jags – all of which are missing in someone who has fatigue/sleep problems/inability to concentrate due to a fever or virus.

The only self-esteem problem I have is that I have too much self-esteem. Any claim of hopelessness has to look at the facts that in the 20 years since I got sick, there has been not one medication developed for CFS, and many (if not most) doctors still wrongly believe the problem is psychological – Modern Medical Science provides few reasons to be hopeful that a cure is right around the corner. But being realistic that there really is no cure available is not the same as thinking all is hopeless when there are options.

This is the danger of amateurs diagnosing mental/emotional problems. They become so convinced that they are right that they refuse to accept the opinions of licensed psychiatrists that some component required for the diagnosis is missing. In this case, it’s the "unreasonable" part of the equation ... the psychiatrist, unlike the online amateurs, has seen the records that prove my version of the doctors’ actions is accurate and supports my statement that they "done me wrong". Which is the same opinion of those doctors’ actions that I’ve received from several lawyers and other doctors. Are we all paranoid that we all see the same things in the documents?

This is why it is essential that only someone licensed to practice psychology should be allowed to make a psychiatric diagnosis – too many amateurs who think that the only symptom required for a depression diagnosis is sleeping a lot, and the only thing required for paranoia is that the story sounds bizarre, without knowing what other criteria are required for an accurate diagnosis.

Truth is stranger than fiction, and I have the documentary evidence that proves that the only fiction in my case is that written by doctors and judges who refuse to accept that CFS is an objectively provable biological/neurological condition, not being lazy or crazy. They’re the ones who say "don’t confuse me with facts, my mind is already made up" – I’m the one who wants people to look at the facts to prove I’m telling the truth; read the actual medical reports, not the judge’s summaries that claim that even the doctor who says I’ll never work again "meant to say" I was faking, and the actual testimony of the VocRehab experts who say I can’t work, not the judge’s version that says there are plenty of jobs I’m qualified for and no reason to think I can’t do one of them. Read the forms I filled out for doctors’ appointments, and the handwritten notes of what I really said, not the doctors’ typed versions of what they think I should’ve said, with a critical eye to what information disappears or is invented between my own words and the doctor’s typed note. Call and talk directly to me and the doctors, to verify for yourself that we are all fluent speakers of English, so this was not a problem rooted in a language barrier or heavy accents that prevented easy communication; in fact, the handwritten notes confirm that I was understood perfectly, both the virologist and his diagnosis were excised in the dictation.

Demanding that you read the source documents before making up your mind is hardly the action of someone who’s having unreasonable paranoid fantasies that won’t stand up to intense scrutiny of the facts and evidence.

To the contrary, it’s the doctors’ and judge’s versions which won’t stand up to scrutiny when you see how they have repeatedly twisted words, made up "facts", and ignored hard evidence to reach the conclusion they want to reach, rather than the unpalatable truth, that this is someone who never shied away from hard work and still badgers people to this day to help her find a job she can do. The psych professionals have seen the evidence that what I say about the doctors is true, and don’t concur with the online amateurs’ attempts to diagnose paranoia without grasping there’s factual proof behind my statements.

Combine that with the CDC website specifically saying that those tests which show objective evidence of CFS are "unnecessary", and, in light of their earlier memos showing them to be more concerned about saving SSDI and UNUM the cost of benefits than they are about the patients’ well-being, and the paranoia attributed to CFS patient/activists turns to rightful outrage at prejudicial injustice which has cost a million Americans their physical and financial health.

Sunday, August 12, 2007

NYTimes on Poor Medical Care

World’s Best Medical Care?

"Access. ... even Americans with above-average incomes find it more difficult than their counterparts abroad to get care on nights or weekends without going to an emergency room, and many report having to wait six days or more for an appointment with their own doctors."

"Quality. ... we scored poorly in coordinating the care of chronically ill patients, in protecting the safety of patients, and in meeting their needs and preferences, which drove our overall quality rating down to last place. American doctors and hospitals kill patients through surgical and medical mistakes more often than their counterparts in other industrialized nations."

* * *

There’s an old quip that if you’re happy with your HMO, you haven’t been sick. My former employer ignored complaints from the staff until someone in his own family got sick and he found out first-hand how bad it really was. At the first opportunity, he changed us to a different HMO, which was, um, not quite as bad. Best thing I can say about it. It was still impossible to get them to pay for anything beyond absolute essentials (for example, their stance was that they didn’t need to do specific allergy tests because Seldane fixed the problem, and there was no way for me to completely eliminate that type of tree pollen from my life, so the information of which tree was unnecessary; they were more willing to test for food allergies, because you can avoid foods, but I already know what foods I react to).

In fact, with both HMOs, two different local medical groups, I faced waits of 6-10 weeks to see my own doctor. One routinely gave instructions to go to the ER (which my insurance would not cover for services that could be provided in a doctor’s office) if you needed to talk to a doctor sooner; I was not even allowed to leave a message for my doctor to ask a question. At least the other would have someone call me back to advise whether I should go to the ER or to Urgent Care (or whether therewas something I could do at home). But still, when my doctor pointed out that she was not an eye expert, couldn’t tell me over the phone whether this was or was not serious, her medical group doesn’t employ an eye expert she could refer me to on a weekend, go to the ER to see an eye expert, I had to fight for a couple months to get the ER visit paid for, because, while the infection may have threatened the vision in my good eye, it was not "life threatening" and "could have been taken care of in a doctor’s office" and therefore didn’t require the ER.

Thankfully, my current doctor is self-employed. He keeps a certain percentage of his time available for same-day and next-day appointments, and when I call, he himself returns my call within the hour. He also, without being asked, will take me before patients who’ve been waiting longer, because he doesn’t want my weakened immune system exposed to any more germs than necessary. A far cry from another medical group where I invariably got sick after every appointment because I was left to spend at least half an hour in a room with coughing/sneezing children too young to know to cover their mouths; any attempt to spend less time in the waiting room was met with resistence – they wouldn’t tell me by phone how far behind schedule the doctor was so I could arrive minutes before he was ready for me, wouldn’t put me in an exam room early, wouldn’t let me wait in the hallway.

I took my CFS to a vaunted medical center that advertises "innovative care". As the Times notes, and both activists and doctors have told me, they score very poorly in treating the chronically ill – that medical group is only interested in things that will get them headlines. Since no one there is researching CFS, they could not possibly care less about it. Here’s a pill, now go away. They weren’t interested in learning how the pills work on CFS, because it wasn’t a subject of interest to them, so they are still prescribing anti-depressants eons after research has proved them useless for CFS, and when the patient tells them the pills were useless, the response is to prescribe a different anti-depressant, and another and another, not try an entirely different tactic (as Dr. Groopman’s book recommends when treatment fails).

You can count me as the 1-in-3 Americans who are insured but still not happy with the quality of medical care available.

At this point, there’s not a CFS specialist within several hours of me. Someone who is having good luck with having her hormones rebalanced told me to try that approach, but I don’t travel well over the distances I’d have to go to see someone who knows how to do it, and I don’t know enough about hormones to educate a doctor locally as to the subtle variations produced by CFS and how to treat them.

After 15+ years of handling auto accident cases, I know plenty about orthopedics and neurology, having constant education from our medical experts, but I never had a case involving hormone imbalance, so I never needed to learn anything about that subject. The sum total of my knowledge in that field is that researchers have been finding cortisol imbalance and some are finding adrenal burnout in CFS, and that taking the natural supplements recommended for both prevented me from getting worse, but didn’t cause improvement.