Fatigue; Here’s A Great Analogy and Some Examples

ill

 Ken McKim, the husband of a woman with Crohn’s disease likens fatigue to if a healthy person went around chronically sleep deprived (but at least in their case they can sleep extra and improve their situation), whereas with fatigue we can’t.
5 Till 6
He proposes that healthy people do an experiment for one week in which they stay up all night except for 4 hours and the next day do all their normal activities, then when they go to bed set their alarm to go off every hour and stay up for 10 minutes each time they turn it off before going back to sleep.
He says that by the end of such an experiment one should have more empathy as to what those of us with fatigue go through. It occurred to me that this would be a good experiment for all medical students because even with all their cramming for exams they probably still don’t get the full effect of what it’s like to have a chronic illness.
Doctor let down
I woke up this morning and took a shower, and felt alert just long enough to eat some breakfast, but as soon as that was over my energy drained away again. I again felt exhausted and have been finding it hard not to drift off to sleep without warning in the middle of swhatever I’m doing. I go from being exhausted but awake to suddenly finding that I’ve drifted off (only after I’ve done so and wake up).
Atlas Statue
Back when I was seeing the sleep medicine specialist at Emory I was supposed to have a daytime sleep study to rule out Narcolepsy but in order to do that you had to sleep 6 hours first and at the time I couldn’t do it because of the myoclonus keeping me from falling asleep and then once I did, people were tinkering with equipment in my room waking me up because of the noise and light coming in the door.
Looking up at doctors after fainting
Nevertheless I can make a pretty educated guess that the fatigue caused by my chronic illness has alot to do with these sleep cycle abnormalities, particularly the central nervous system problems I have which affect the autonomic nervous system. In order for the brain to function correctly it first must have enough energy. The nighttime sleep studies I had did yield some important information in that my sleep/wake cycle is royally messed up showing Delta waves at the beginning (even before falling asleep) when they are only supposed to be showing up in the last sleep stage.
brain waves on screen
This was also documented in just about every EEG I’ve ever had since second grade when I was first brought to a neurologist because of near fainting spells. Some research has proposed that there may be a mitochondrial component to the severe fatigue suffered by people with chronic illnesses.
in bed
PubMed has numerous papers that have been published on the subject and in recent years there have been more and more scientists interested in this angle. The papers shown under the search Mitochondrial Component to Fatigue will bring up papers you can look through and print out those you feel pertinent to give to your doctor. It is not uncommon for doctors to try to dismiss research as being from “junk science journals” etc., but the papers linked in PubMed are considered fully legitimate professional medical journal articles from all over the world.
GQ Style Doctor
Don’t accept a doctor’s sweeping generalization that because studies were published in foreign journals outside the United States (or outside your country if you live elsewhere) that they are not legitimate sources. There are many fine and well designed and documented studies that come out of places like the Netherlands, Australia, and even Asian countries or India. You’d be surprised where some of the most cutting edge research comes from.
Never Settle
Also, don’t be afraid to write some of the investigators listed on these research teams. They often provide an email address in order to give the public an oppourtunity to communicate with them and ask questions. By doing so you just might find out about important studies that are accepting participants that would benefit people with your condition and these scientists might even have suggestions that your doctor can try to treat your condition more effectively right now!

If your doctor is offended by this and unwilling to discuss these new approaches with you, chances are you have the wrong doctor.

Dishonest Doctor
Remember that if you have severe fatigue you only have so much energy to work with in a day and a truly good doctor will understand this and respect and appreciate the fact that you put in the time to take an active role in your healthcare and bring him this written material. If he/she truly has your best interest at heart he/she will then genuinely look into these options for diagnosis and/or treatment and will take the legwork from there.
Blindfolded-159623
Way too often we as patients end up doing their jobs for them because of their stubborness and inflated ego, because they have too much false pride to admit when they need to consult professionals who know more than they do.
Doctors in rounds
This is when the relationship becomes more about their needs than yours and if after trying to present them with this information they reject it out of hand more than a few times, it is likely that they ultimately won’t give you the care you need and deserve.

It should never be OK with a doctor to allow you to suffer any more than absolutely necessary and if there are still options left not to use them.

I had to learn that after I nearly wore myself out because I found myself working harder than my GP at Emory. At first when things weren’t getting completed and questions weren’t answered I thought maybe it just slipped his mind because of his patient load or the time got away from him, but I am very conscienscous about following up and at some point had to face the fact that my doctor was not the benevolent and altruistic person I thought he was and that chances are no amount of education was going to change that.

Any doctor that takes patient reports out of the equation might as well just turn in his medical license right now because he’s no longer acting in the patient’s best interest, he is treating his patient as an inanimate object.

For a chronically ill highly educated patient (which most of us become after so many years) it is imperative to have a doctor who bottom line accepts that this is the patients’ body and that with their being a competent adult over the age of 18 only the patient has the right to make the ultimate decision in treatment. A doctor can only advise based on his training. He cannot be inside your body to prove what your body is experiencing and how it affects you, nor how much suffering you can stand. Objective testing is only a tool and physicians have to realize that it can’t always detect everything beyond a shadow of a doubt. It has its limitations, and the clinical presentation is equally, if not more important in assessing what’s going on medically.
Doctor giving bad news
Prolonged fatigue is one of those symptoms that science does not have the knowledge to fully quantify, nevertheless it is very real and cannot be dismissed as psychological, or irrelevant information. To do so is very dangerous, because fatigue is a very good indicator that something is in fact seriously wrong in the body.
Healthy patients do not have this level of fatigue, and the distinction between fatigue and depression, for instance, is that patients with fatigue want to do things, they wish they could, but just don’t have the stamina. People who are depressed generally lose interest in hobbies and things they liked to do previously.
Creating
I can attest to this distinction, as I have interests that have continued throughout my illness and I remain enthusiastic and interested in them. It bothers me when I can only watch them in videos and not partcipate because of my level of illness.  I am fatigued yet I’m anything but apathetic. I love life and look at each day as an adventure!
Inspired Woman
An example is this; I absolutely love snakes and have two Ball Pythons. Many of the people I’m involved with online surrounding this interest travel to reptile shows where they can pick out snakes and supplies and caging for them in-person and meet up. I would really love to do that, but seeing as there are only two a year a distance away outside Atlanta, (in Cobb County) I have problems getting there with handicap transportation, and it tacks at least 2 more hours onto my day including a transfer to another county service if I were to book the trip. (Not to mention it costs double fare).
precariously holding boxes
Then if I were to stay a decent number of hours to be able to see everything, I would be sicker by the time I returned home. If I went in somebody’s car I could leave when I became too exhausted, but on public transit you can’t do that. (A time is prearranged to return and if you need to leave earlier they will not accommodate you no matter how ill you are).
Navigation
I would love to go to the big reptile show at Tinley Park (in Illinois) but not only am I not able to afford the travel and hotel for several days, the travel itself would be too taxing for me right now.
woman-blowing-nose
Another example; I really love art and have been trying to come up with other forms of art I can make that don’t require so much fine motor dexterity and although I’ve found some that are easier for my hands when I actually began doing these projects I found them to be incredibly exhausting and take me much longer than they should. I actually sweat with the effort it requires, and either really pay for it in the several days that follow or have to stop before I get it done. This is very frustrating because my motivation is still there but I can’t complete the task or at the times I do I do it with great negative consequences.
Shoveling coins
My best guess in treating fatigue would be to use compounds that directly address a mitochondrial disconnect, so if any of you reading this find new developments in this area of science please feel free to post them here in the comments, as it might really help others suffering with the same barriers. Please post sources if you can.
Barrier
Somehow the patient community must get these ideas across to doctors in clinical practice so that rather than disengaging from us when our illness is prolonged they look at it as something worth working on. Even if a cure is not close by, there can be a sense of accomplishment for both patient and doctor by adopting an investigative approach and trying things even if just based on theory.
Interview
Sooner or later improvement will likely happen with that type of perseverence. That is better than doing nothing, regarding the patient as hopeless and a “treatment failure”, and just tuning them out. That should never be the response to a complicated case. Just like pain, the continuing fatigue a patient experiences is a signal from the body that the doctor’s job is not complete.
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Why Doctors Don’t Come Clean To Their Patients

A True Apology - Make It Right

Brian Goldman, Leana Wen, Archie Cochran, are all doctors who dared to challenge the status quo.

When Leana Wen decided to become a doctor she was inspired by her childhood pediatrician, a woman who allowed her patients to know her, not only as a doctor, but as a person, showed a sense of humor, and treated them not as merely a body, but as a human being with dignity, relating to each patient person-to-person.

Dr. Wen went through medical school and residency with this role model in mind and when she graduated and became a doctor she never fully realized how insular and secretive a microcosm the field of medicine had become until she shared with a group of colleagues and merely proposed “why not be transparent to our patients?” This innocent question suddenly made her a target for a full frontal attack on her by those very people who were supposed to be her peers and supporters.

Archie Cochran, a doctor and a prisoner in a German prison camp during WWII challenged the status quo and the mystique that doctors often embrace when he realized that prisoners were lacking in Vitamin B12 and Vitamin C. Not only were other prisoners suffering from a mysterious illness but so was he. He has Marmite (an English bread rich in Vitamin C) smuggled into the prison. Informally he gives half of the prisoners B12 and the other half Vitamin C and their illness improves. He publishes his findings but feels that nobody will listen or care about what he’s discoverd.

Later a young German doctor discovers the material, is shocked this is happening, and says to his colleagues that something must be done; that this data is irrefutable and that it is actually a war crime not to provide vitamins to those prisoners. Next morning lo and behold vitamins show up at the prison.

After he himself had recovered in the prisoner of war camp, Archie Cochran later spoke before colleagues at a lecture in which he presented findings of a clinical trial he’d conducted on whether heart attack patients recovered better at home or in the hospital. The prevailing thought at that time said that patients recovered better in the hospital and that having them recover at home was absolutely “unethical!” In his presentation he initially told them his hypothesis that patients recover better in their own homes was wrong and that he stood corrected. There was an uprorious response to this announcement delivered with lots of hate hurled at him, denouncing him and in effect they called him an idiot, telling him he was killing people and to shut the experiment down….Only that’s not where it ends.

Once the din subsided he resumed his speech and proceeded to reveal that in fact he had not been wrong and that the statistics he’d read them were actually reversed! He explained that the study showed that people in fact recovered better in their homes than in the hospital. In response to this earthshattering revelation you could hear a pin drop; no uproar, no cheers, no congratulations, but instead a chill that permeated the lecture hall as his colleagues seethed in silent anger in their seats.

In this video by Tim Harford, a writer on economics uses the analogy of design of a product to illustrate why using trial and error in todays complex medical system is important, why doctors should not be put off by what they may view or be told are “unproven” theories or treatments, and why approaching the job with humility actually works better than to adopt a stance toward patients of omniscience and omnipotence.

Medical books and the long drawn-out and rigid standard of placebo-controlled clinical trials don’t always work when you’re working with real people in the real world, and a one-size-fits-all approach to patient care ultimately sells patients short. As Tim Harford says, “People are not machines. It’s not like fixing a car.”

When the doctor cuts patients out of the process and expects total “obedience”, “compliance” rather than a meeting of the minds with an aim to solve a problem he/she loses a valuable opportunity because even out of mistakes can come happy accidents, and ultimately important medical discoveries.

If what is written in the books is in fact wrong that causes improper treatment of patients for years. As one former paramedic friend said to me, “Bodies don’t read books.” This is why the doctor patient relationship and listening to the patient should come before any textbook. Just because a book says “If a patient has these symptoms you must do X” one shouldn’t apply this across the board as if it were a pat formula for all patients who have such symptoms.

Throughout history theories have been accepted by mainstream medicine and then decades or centuries later, dismissed as outdated. It is tragic that many pioneers in the field of medicine who challenged prevailing thought were persecuted for doing so, sometimes until death, and that many were never recognized for their important contributions when they were alive.

Doctors are expected to know everything and never make mistakes (not by patients but by their own peers). They are “kept in line” by their own profession, and outed for being non-conformists and trying empirical or off-label treatment approaches (as is often the case with doctors treating chronic Lyme Disease and Chronic Fatigue/ME patients).

When they expose real corruption in their peers, report them for patient abuse or neglect, and/or their place of employment or refuse to be a part of it their careers are often threatened and sometimes destroyed. What is done to patients by doctors in the form of gaslighting and character assassination is the direct mirror image of what their peers and employers do to them if/when they attempt to go out on a limb for their patient(s). It doesn’t even have to have happened yet to a particular doctor. Just the fear and unspoken “threat” that it could by virtue of urban legends and talk around the water cooler is enough for most doctors to “stay in their place” and too often fail to act in a patient’s best interest.

Drawing outside the lines can have dire consequences. This is made clear in subtle and sometimes not so subtle ways along the path of a doctor’s career. A patient may be left dangling and minimally or untreated for months and even years because a doctor is more afraid of the corporation that employs him or what other doctors might say or do to him than afraid that a patient may get worse, die, or that a family may sue.

Why? Because when conventional treatments don’t work sufficiently a doctor is often given the message (and sometimes directed by policy) by the employer he works for to do nothing. If he sides with the employer and does nothing and a patient dies, gets worse, or a family sues, he is shielded by the corporation he works for and they take the heat as his supervisor which legally is ultimately the responsible party, however, if he sides with his patient against the recommendation of his employer and or most widely accepted treatment practices of his profession it is highly likely his employer will either fire him or claim they had no knowledge of his actions and claim he is singly responsible should anything go wrong.

Most doctors in today’s “managed care” environment work for corporations, therefore they stay “on the safe side” often to the detriment of their patients. They become comfortable as puppets of the corporation in exchange for certain comforts and immunity provided them because of the power and wealth of the entity which employs them such as a Legal Department, Dept, of Patient Relations, Risk Management Dept. etc. The corporation may offer them some sort of 401K or retirement benefits, they don’t have to worry about overhead, nor do they have to hire office staff or billing staff and pay them out of their profits as they would if they were in private practice. They give up a considerable amount of decision-making power and autonomy in return for those perks…and oftentimes they sell their soul.

There is one unwritten rule that all doctors working for a corporation are expected to live by; to uphold the reputation of the corporation they work for. The employer may or may not officially put this in their contract, but the implication is clear and unmistakable.

The moment a doctor signs on to such an arrangement he/she takes on the face of the corporation. For the same reason that large gifts of money from special interest groups to state and federal legislators and people running for office are problematic, so is this kind of working relationship in which a doctor is “housed” within a healthcare company. From that moment onward a doctor has divided loyalties. It is likely that doctors in such environments are confronted with daily ethical dilemmas of one type or another, but as patients we rarely hear about them.

For the patients reading; how many of your doctors have openly admitted that their employer instructed them to do something they didn’t ethically agree was in your best interest? I doubt very many have. And as Dr. Leana Wen suggests wouldn’t it be better if they openly disclosed this to you, and said, for instance, “I agree with you that it makes sense to try this treatment but I’m afraid I would lose my job if I move forward to order it.” Only then could doctor and patient stay alligned, engage in effective disalogue, and figure out how to handle that obstacle. Instead what too often happens is that the doctor presents the circumstances very differently, refusing to accept valid reasons or proof offered by the patient as to why this would be a good course of action, denying the existance of a condition, falling back on a dictatorial or hostile stance, even questioning a patients’ sanity or motives (none of which are effective coping mechanisms in their work, and only serve to place doctor and patient at odds).

That said, doctors do have their part of the responsability to put their patients first. While as patients we can acknowledge that doctors have pressures placed upon them these facts do not excuse doctors from the responsibility for placing highest priority on the health, safety, and wellbeing of their patients. Whatever conflict-of-interest that may exist in their relationship with their employer they, not we have chosen that trade-off and it is up to them to find a way out of this divided loyalty conundrum.

I get it that they’re often scared to make a move on behalf of their patients for fear of retribution or retaliation from either peers or employer, but it is encumbent upon them that they refuse to trade our comfort for their own.

Gold Caduceus

The symbol of Caduceus, a staff  with wings and two snakes wrapping around it in Greek Mythology was carried by Hermes. In Roman Mythology it was carried in the left hand of Murcury who was said to be the messenger of the Gods (emphasis on the word, Messenger). Not God himself, LOL. Here’s an excerpt from that article;

“It is said that the wand would wake the sleeping and send the awake to sleep. If applied to the dying their death was gentle; if applied to the dead they returned to life.”

Another symbol, The Rod of Asclepius is often used to denote the field of medicine and it seems was the original symbol.

Nevertheless, the original message was supposed to be that doctors were given this responsibility by God, a mission to attend to the health of their patients. It was never meant for them to abuse the power that comes with the responsibility against their patients just because there are currently no legal consequences. It is a moral imperative. This message also comes through loud and clear in the Hippocratic Oath.

It is said that in order to change a person must first admit there’s a problem. When I was abused, bullied and defamed at Emory Healthcare I was only given empty apologies. “I’m sorry you’re not satisfied” is not a sincere apology. I tried to suggest a number of solutions including my being on their board of directors, getting involved in sensitivity training for their residents, and a number of other ideas but every one of my suggestions for conflict resolution was turned down. They weren’t interested in fixing the problem THEY created because they weren’t willing to take the first step in admitting there was a problem.

A genuine apology involves 3 important parts;

“I’m sorry”,

“It’s my fault. I was wrong”, and

“What can I do to make it right?” Then really doing it.

There are some doctors who got this right and then began a dialogue with patients to improve relations. Here is one of them. He says studies have shown that in addition to being the right thing to do, apologizing actually makes the risk of lawsuits less likely. Patients really are not wanting to sue and generally only do that as a last resort when a doctor absolutely refuses to accept responsability for his actions. In fact most patients just want the mistake or wrong decision corrected so they can go on with their treatment and go on with their lives.

It seems that the root of the problem lies in that there are too many middle-men between doctor and patient who have no business being there in the first place and that further confuses a doctor as to what his job description is and who it is he is there to serve. The power structure in too many medical facilities as it exists today encourages (if not dictates) that doctors sacrifice their patients’ best interest in order to save themselves in a hostile work environment where doing the right thing is frowned upon heavily.

In fact, doctors are actually reinforced for putting a patients’ best interest last, corporation first, and him/serself second.

Solution

In a word? Unbundling. Quite simply corporate-controlled healthcare doesn’t work in the long-term for most of those in it (except for those in top-heavy positions in administration who are making six figures or more). It doesn’t work for doctors, it doesn’t work for nurses, and it doesn’t work for patients.

Doctors must find creative ways to practice outside these corporations which now have bought and paid for so many’s silence and collusion. The cycle of abuse has to stop and doctors need to go back to working for and with patients as the profession was originally intended.

Sign the petition for a legislated system of accountability for all chains of command. This is just the beginning of a new system of healthcare.