Thanks to Tom for finding this, and to John for passing along Tom's discovery:
"Olson has some evidence that while exercise appears to help those who are
tired, it may decrease the ability to adapt in individuals experiencing
fatigue and exhaustion."
FWIW, One see or listen to her giving a talk at:
http://www.uofaweb.ualberta.ca/nursing/olsonrounds.cfm
Rethinking Fatigue
Dr. Kärin Olson
Nursing Rounds, April 13, 2006
Haven't listened to it myself.
She has a paper in process (it seems)
http://www.chpca.net/initiatives/research_registry_CVs/Olson%20CV.pdf
Olson, K. (in preparation for Journal of Chronic Fatigue Syndrome) Fatigue
in the context of chronic fatigue syndrome.
----------------
http://www.sciencedaily.com/releases/2007/01/070131112341.htm
Source: University of Alberta
Date: February 1, 2007
More on:
Chronic Illness, Workplace Health, Diseases and Conditions, Today's
Healthcare, Mental Health, Elder Care
Take Fatigue Seriously, Says Researcher
Science Daily < Instead of dismissing grumblings about being tired or
exhausted, people should take these complaints seriously before they lead to
a worsened health state or even death, says a University of Alberta
researcher investigating fatigue.
Dr. Karin Olson, a U of A professor from the Faculty of Nursing, argues that
there are differences between tiredness, fatigue and exhaustion and that
recognizing those distinctions will help health-care workers create better
treatment plans for their patients. Her findings are published in the
current issue of "Oncology Nursing Forum."
Olson has studied fatigue in six ill and non-ill populations: shift workers,
recreational long distance runners, individuals with cancer in active
treatment or palliative settings, and individuals diagnosed with depression
or chronic fatigue syndrome. Having worked with cancer patients for many
years, she saw how serious fatigue was and the impact it had on the
patients' quality of life. Some patients even withdrew for a potentially
curative treatment saying they were "too tired."
"The kind of fatigue experienced by individuals with cancer is different
from the feeling that you or I have at the end of a busy week," said Olson.
"Interestingly, when you start looking at other populations, such as people
with chronic illnesses or shift workers and take a broad view, the
descriptions of fatigue are the same. Thus, while the reasons for fatigue
may vary, the kinds of adaptations required may not."
Olson, who is currently an Alberta Heritage Foundation for Medical Research
(AHFMR) Health Scholar, has created new definitions for tiredness, fatigue
and exhaustion and argues that they represent various points on an energy
continuum. The amount of energy a person has influences how easily he can
adapt to stress that comes his way. Individuals who are tired still have a
fair bit of energy, so although they may feel forgetful, and impatient, and
experience gradual heaviness or weakness in muscles following work, this is
often alleviated by rest. Fatigue, on the other hand, is characterized by
difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty
sleeping, increased sensitivity to light and the limiting of social
activities once viewed as important. Individuals with exhaustion report
frank confusion that resembles delirium, emotional numbness, sudden loss of
energy, difficulty both in staying awake and in sleeping and complete social
withdrawal.
"It is important to recognize the difference between tiredness and fatigue,
because fatigue is a marker that the body is not able to keep up," says
Olson. "The onset of the manifestations of fatigue, particularly if these
are not normal states for you, should be taken seriously."
Failing to understand the distinctions between tiredness, fatigue and
exhaustion could result in the use of inappropriate interventions that
inadvertently promote fatigue and exhaustion. Olson has some evidence that
while exercise appears to help those who are tired, it may decrease the
ability to adapt in individuals experiencing fatigue and exhaustion.
Long-term use of caffeine and other stimulants should also be avoided by
people experiencing fatigue and exhaustion, as these substances "fool" the
body into thinking it has more energy available than it really does.
"The important thing is to try to prevent or at least delay the progression
from tiredness to fatigue and then from fatigue to exhaustion," said Olson.
"We are starting to work on some interventions that we think may be helpful.
In the meantime, families and friends can help by recognizing changes
consistent with fatigue and exhaustion and look for ways to help minimize
stress."
This work may also have applications to other population, such as students
or individuals with chronic illnesses, who have not been studied to date.
"Students tend to stay up late at night, studying hard," said Olson. "Some
studies show that changes in sleep patterns are may compromise one's ability
to remember things and to integrate new information
Erik comments:
I would like to point out an interesting choice of words that she
made.
She described exhausted patients as "Having a fear of running out of
energy" that acts an obstacle to undertaking the effort.
Now I know it seems like a small thing, because one can certainly
become agitated or apprehensive over the possibility of being
stranded.
But when you have learned by experience that the likliehood is an
inability to complete the projected expenditure of effort, what you
would have is a realistic "expectation" that is based on due
consideration of your limitations.
That is not quite the same thing as "fear".
* * *
I agree with Erik. I have been a mile away from home and collapsed to the point that I could not get home under my own power. Not after a short rest, not after a long rest, probably not even after 8 hours of sleep right there on the sidewalk. After this actually happens to you a few times, it ceases to be "fear" and becomes a realistic concern.
When I told one doctor that I cannot exercise due to my symptoms, he attributed it to irrational fear, and ordered me to do what I knew for a fact would make me worse.
But when I discussed it with someone who has both CFS and psychological training, she clarified that "irrational fear" means no basis in fact. At that time, I was having daily fainting spells, falling to the floor with no advance warning, it was not an irrational fear that I hesitated to navigate stairs unnecessarily or cross streets without someone there to stop traffic if I fainted. She saw no irrationality about it that I didn't want to walk outdoors when I could walk more safely indoors. She also saw no irrationality about it that if walking the distance the doctor recommended caused me to spend the rest of the day in bed, I chose to exercise only within my limits, and only after seeing to it that my basic needs (food and hygiene) were met. I was not going to get well if I did not eat properly.
As far as she was concerned, the only irrational thought was the doctor trying to tell me to ignore serious symptoms because they didn't match his erroneous impression of what a CFS patient "should" feel like.
56 comments:
Yep ! I trust "medical doctors" about as far as I can spit. Please tell me why is it illegal for a health food store to sell raw,fresh apricot kernels?? Greed dictates what gets on the market in America.
tschuckman@aol.com
It must be exhausting enough simply being right all the time.
So sad.
Being right isn't exhausting, finding a doctor who can listen and admit that he might just be mistaken at his snap judgement is the hard part. What I can't help but wonder is- who piddled in your wheaties, darlin? You must not know Karen to so easily dismiss the overwhelming facts she has to prove the medical misdiagnoses and malpractice she has endured in the past and is still fighting today. Me? I have only known her for 37 years, from when she was involved in a dozen or more clubs in school, was writing a regular town newpaper column when she was in High School through becoming Salutatorian when she graduated. I have seen first hand the (admittedly >insane< ) levels of energy she has put into everything she has ever done, from junior high through her law career. So, little trollette, why not crawl back under your bridge or find someone weaker and less able to fight back? Hmmm? Or try using your real name, aliases are for cowards.
JoAnn Abbott, Virginia
Alias? What alias?
My name is Andrew A. Passi - or if you want to be specific Andrew Passi MD.
9/04 is my birthdate.
Forgive me for pointing out you were wrong, especially since I am a medical doctor.
I know that doesn't go over well with this crowd.
In what way did you point out that Karen was wrong? Or me if that is to whom you were referring? All I saw was someone insulting my oldest friend, not participating in a logical discussion of facts, nor making a positive or supportive comment. Nor did you state proof that you know she is wrong, as would be supported by your review of her lab results, personal observation of her abilities or even consultation with the many doctors who have confirmed her diagnoses. Although I have not had the opportunity to experience as many variations of compatancy within the medical field as Karen has, one thing I do know and always remember- 50% of all doctors graduated in the bottom half of thier class. *note- that was truth wrapped in humor*. Oh, and get a second opinion if you feel you are not being treated appropriately.
JoAnn
not Karen- she has the bright red hair, mine is whatever color I feel like heading toward this quarter.
JoAnn wrote "Nor did you state proof that you know she is wrong, as would be supported by your review of her lab results"
My medical records are available to anyone who wants the proof that they are filled with false statements. The alleged Dr. Passi has never requested that a copy be mailed or faxed to him. NONE of the people who claim to know better than me have ever asked for a copy -- they all just "know" that I'm wrong.
In fact, I know what I have been told by specialists (my diagnosis has been confirmed and re-confirmed repeatedly), and what I've read that was written by experts. I did not diagnose myself, I was diagnosed by someone who was researching this specific condition. The treatments I requested were all recommended by experts, not something I dreamed up myself.
But it's much easier for the trolls to act like I'm the one who's ignorant of proper CFS diagnosis and treatment than to admit that some doctors don't read their journals, and to claim that I want something no doctor would ever prescribe. A respected rheumatologist, on learning what I wanted that was refused, asked "what would it have hurt?" I might have been back to work within weeks if I'd gotten the RIGHT treatment instead of the wrong one.
What is really tiring is trying to educate doctors who refuse to be educated. "CFS is characterized by extreme exhaustion lasting 6 months AS WELL AS biochemical abnormalities"; any doctor who is unaware that there are *testable* abnormalities should not be treating CFS patients, period.
It is a sorry state when patients must be responsible for the education of their doctors, but that is where we are.– Devin Starlanyl, M.D.
It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say. -- Muhammed B. Yunus, M.D.
As my friend's rheumatologist told her, "I have 400 diseases to keep up with, you only have one". He was open-minded enough to give patients credit for intelligence and the ability to research their own illness to know what the latest and best treatments were. Unfortunately, such doctors are few and far between. Most believe that doctors know everything and patients know nothing. Yet, when I dropped thousands of pages of doctor-written information about CFS on the table, my doctor was forced to admit that he had not read *any* of this literature. Or, for that matter, any information about CFS beyond the paragraph in his medical school textbook, written before most of the research that I was telling him about.
JoAnn wrote "personal observation of her abilities"
You have seen me in the last few years to know that I don't walk well and don't look well. Most of the people commenting in this blog have NEVER seen me. They have no idea if I walk with a cane or walker or use a wheelchair, or if I can walk at all. They just ASSUME. Like some of my doctors, they don't need to ask questions because it's easier to assume the answers they want to hear.
People who sit in front of a computer desk automatically assume that everyone has the same set-up they do ... until I point out that I have a laptop and do most of my work and writing while horizontal due to dizzy spells when sitting upright for prolonged periods. It just never crossed their mind that their way is not the only way.
You and Nathalie have heard me on the phone slurring words and fighting aphasia; these commenters "know" I don't have those problems because they see the polished pieces, some of them edited by other people, that show no evidence of slurring or aphasia. At times, first drafts are touch-typed in a dark room with my eyes closed because I can't stand even a 25-watt light bulb. (Light sensitivity is a common symptom.) Again, not obvious in the final product, though it would be if they'd see me in person instead of just assuming.
This blog post quotes a professor of nursing and CFS expert Dr. Lapp. In what way am I "being right"? The opinions and research are not mine -- it's information from medical professionals that just happens to support my own first-hand observations of what happens when I exercise.
I am not Dr. Karin Olson of Alberta, Canada, I spell my name KarEn and I'm in California. And I'm definitely not Dr. Charles Lapp of North Carolina; I've met the man and we look nothing alike.
If the alleged Dr. Passi wants to dispute the research, let him address what Dr. Olson and Dr. Lapp have said, and not merely verbally abuse the messenger. I'm sure Dr. Lapp, a noted CFS expert, would be pleased to explain and educate, doctor-to-doctor. Assuming the alleged Dr. Passi is truly interested in learning about CFS and not just engaging in the standard practice of "blame the victim".
Incredible. That is the only word for you people. Absolutely incredible. I have yet to encounter such a group of characters anywhere, on the net or elsewhere.
I was not correcting anything the blog writer wrote (have nowhere near the time to try and prove the invalidity of 99% of the babble, regardless of where or who it is claimed to originated. Besides, it is clear the people who participate here are of one mind only. Do bitter, opinionated, stubborn people ever open their eyes?).
I was correcting the writer who stated I was a "trollette", assuming it meant female, and that I use an alias. Neither are correct.
But you simply add to my point that eyes and minds are closed here - if you don't like what is said, if it doesn't fit the world you have created for yourselves, well then, everyone else is wrong.
Here's a medical/business question for you to chew on ....
If CFS and/or ME is as prevalent as you seem to think it is - why is it ignored by physicians, especially those who are just deciding a field to enter? Many must, due to financial concerns, go into an area in which physicians are needed.
So ..... if there are so few MDs who treat CFS/ME - why aren't more going in that direction?
Or rather, why more legitimate MDs aren't going into treating or researching these "ailments"?
Because, when you go to a vast many of the "well-known docs" listed on CFS websites you see that - surprise!! - they also sell supplements, packages, "treatments" and such.
And you find that acceptable? Honorable medicine?
Quacks are a term that comes to mind.
"So ..... if there are so few MDs who treat CFS/ME - why aren't more going in that direction? Or rather, why more legitimate MDs aren't going into treating or researching these "ailments"?"
See Pat Fero's commentary, 1/20/07 blog post. "The scientists and MD's (about 300?) are committed to CFS research. It's neither a high profile career in science, nor do they gain great wealth from researching an underfunded, misunderstood, cutting edge illness. When the MD's go home, they do not have support circles of colleagues that admire their work and share stories. The ICONS in our community show wear and tear and holes in their shoes just like us."
Add in that most patients have no insurance and Medicaid pays a fraction of doctor's charges, and it's a sure road to poverty to treat only CFS. My first specialist was forced to moonlight in teaching to pay his bills. Other specialists have sold their office furniture to fund research.
Read Osler's Web http://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/0595348742/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1199326855&sr=1-1
This explains in detail "the sneering opposition of both the Centers for Disease Control and the National Institutes of Health to recognizing CFS as a genuine disease, the hands-off attitude toward it of several leading medical journals, and the obloquy many physicians heaped on it". It's a marvelous expose' of what was going on behind the scenes.
With CDC/NIH circulating misinformation, it's no wonder that doctors never became aware of the (by deMeirleir's count) 5000+ studies showing objective evidence of disease.
Yes, there are sleazy doctors who prey on the desperate with snake-oil and can't tell simple chronic fatigue from CFS. And then there are the reputable ones, www.DavidSBell.com, whose website is not a commercial venture, and "if I ever find a simple cure for them I will publish it away in the Lyndonville News" (which is free). Paul Cheney doesn't even have a website; all he sells is his time.
Besides, it is clear the people who participate here are of one mind only.
Pfft, now THAT is to laugh! She is a liberal Democrat and I am a conservative Republican, and we cheerfully let each other know that we have cancelled out each others votes every time there is a presidential election. And even >I< have privately called her on stuff she has said here, and usually been given more facts to see where she was coming from. See, >I< am willing to learn- when you stop learning, you stop living is my opinion.
Do bitter, opinionated, stubborn people ever open their eyes?
*Grin* You didn't read this when you wrote it, did you dearie? Honestly, I almost laughed aloud, rather like when people find out I am a born-again Christian and immediately say "Oh, but you people as so >judgemental<!", and never seem to see the humor in their statement.
I was correcting the writer who stated I was a "trollette", assuming it meant female, and that I use an alias. Neither are correct.
If you have an XY chromosome as you say, then I appologise for the trollette comment (which could also be used to mean "little troll" as well since it is a diminuative suffix, not necessarily a female one). The nickname "passi" with some numbers is an alias; "Dr. Andrew Passi" is a name, one which can be confirmed, researched and verified as belonging to a real person in a real geographical location.
Incredible. That is the only word for you people. Absolutely incredible. I have yet to encounter such a group of characters anywhere, on the net or elsewhere.
Woot! I am a character! Oh wait- I always have been (right Karen? *grin*).
I was not correcting anything the blog writer wrote
Nope, just generally insulting her from what I can see.
I have nowhere near the time to try and prove the invalidity of 99% of the babble, regardless of where or who it is claimed to originated.
Which kind of begs the question to me- as a medical professional, why do you have so much time on your hands that you feel it is a good expenditure of said time to come here and insist your bitter, opinionated, stubborn mind is the only one in possession of the facts? Why bother to search blogs like this at all for that matter?
I know why I am here- Karen is my friend, she is hurting and I want to support her in whatever way I can, even if we are on opposite sides of the country. I do this via daily contact through email, by reading her blog, following links and doing independant research on the subject of CFS, and by speaking up for her here.
What are you hoping to add to the discussion? Do you have facts, journals, publications that we can look at which will refute anything said here, or which can add to our understanding of the problem? Are you trying to convince Karen that she isn't really sick, and that she hasn't been severely screwed over by the doctors she first saw? Or are you trying to intimidate her into not pointing out the fallacy of doctors being all-knowing?
OK, go to the bottom of these three and start reading there, durn thing won't let me post as much as I wanted to in one bite.
Speaking of realities, I have been unable to confirm via researching medical licensing boards your existance- I don't suppose you would mind telling us where you have your degree and certification from, would you? Or where you currently practice, or your medical speciality? I won't call or write to any private or for that matter public addresses, and I don't want you to feel threatened in any way whatsoever. I just like to know that who a person says that they are is true. After all, if you were, say, really some doctors wife with an axe to grind against anyone who says that all doctors are not demi-gods because you love and admire your husband, I would rather talk to you knowing that than to think you have the medical training and background of a real doctor, when that wouldn't be the case.
Me? I have a BS in Psychology and am currently working on my Masters in counseling so that I can work with PTSD sufferers in the military. Meanwhile, I am having a lot of fun with this, for which I thank you. I do enjoy a good discussion, or a bad one in which I can keep a healthy sense of the ridiculous and stay amused. I love logic and rational discourse...almost as much as I love pointing out illogical statements/logical fallacies. If you are planning on responding to this, might I suggest you do so when in a really good mood? Anger and vitriol usually causesthe person feeling it to make mistakes.
If I may, I suggest that you yourself read Osler's Web, but with an unbiased mind if possible.
When an article/study is suppose to be addressing solid material adjectives such as "sneering' before terms makes it clear that the writer is not being objective. The "in detail" aspect is from his point of view. The "marvelous expose" is what he tells you was going on behind the scene.
Why would several leading medical journals have a "hands off attitude"?
What do "they" have to gain from that?
It makes no sense.
And consider this: 5,000 people tell you a certain fruit is poisonious.
250 people tell you it isn't.
What odds would you take and ingest that fruit?
Merely because a person, be they a MD, PHD, chiropractior etc says something does not make it the truth. I realize if it fits your views, your particular health issues etc. it is easy to go along with them. It is what you want to hear.
But that does not make it correct, and everyone else blindingly wrong.
The nickname "passi" with some numbers is an alias; "Dr. Andrew Passi" is a name, one which can be confirmed, researched and verified as belonging to a real person in a real geographical location.
And yet if I did use my title I have little doubt that would cause you to comment on the usual doctor ego, correct?
Because I can see you are easily identifiable in your computer name. No alias there obviously.
I honestly have no concerns as to whether you believe me to be fictional.
And your research skills aren't way up there - sometimes "google" doesn't have it all, you know.
I do find much humor that you imagine yourself capable of influencing my mood whatsoever. Having such an advanced degree as a BS in psychology I am sure you realize how you thinking you have such abilities speaks of your ego. Similar to your capitalization of "BS in Psychology".
More than 5000 people know that a fruit is poisonous. They know because the stems and leaves are highly toxic, and feeding them to their animals kills them.
250 people have tried to commit suicide or just decided to gamble by eating the fruit. Oddly enough, they are not dead.
Who are you going to believe? The people who fed the leaves and stalks to their now dead animals, or the ones who in 15th century Italy actually ate the tomato?
The doctors who let the CDC tell them that CFS/ME is all in a persons head and that it is a psychological disorder, meaning that they can thus blame the patient for not complying with the doctors ineffective treatment plans; or the small number of MD's and researchers who decided to think for themselves and came up with tests that proved that there were many easily verified things organically, chemically, physically, NOT mentally wrong with the people whom they were treating?
If a million people- or degreed MD's- say that the moon is made of green cheese, I still ain't believeing it until you bring me some as proof!
passi904 said:
And yet if I did use my title I have little doubt that would cause you to comment on the usual doctor ego, correct?
Because I can see you are easily identifiable in your computer name. No alias there obviously.
When I first doubted your name I signed with my full name- here it is again, in the most fully expanded form. Mrs. JoAnn Nancy Ware Abbott, for the long version. Calliope or Bubblemum is for my clown names- I used to entertain kids, still do a bit of face painting for church functions. Bubblemum because I am a mom and love bubbles, Calliope because it is the name of the steam organ in the circus and one of the nine muses, the one for heroic poetry IIRC. The VA is because I live in Virginia, the Mrs. is because I am married, the BS instead of bs for the degree because I am proud of finally getting the blessed thing and besides, I never remember if it should be capitalized or not. Want my phone number or ventrillo info? That way you can hear that I am a female, and just as happy to voice chat as I am to type. Happier, typing takes too long.
JoAnn
"Woot! I am a character! Oh wait- I always have been (right Karen? *grin*)."
Absolutely. :)
"I was not correcting anything the blog writer wrote
Nope, just generally insulting her from what I can see."
Not correcting me because there is no way to correct the truth.
"I have nowhere near the time to try and prove the invalidity of 99% of the babble"
Typical desperate debater trick: say the other side is wrong without citing a single reason other than "because I say so." 5000+ research studies worldwide prove that there is a biological reason for CFS. Neurologists have noted that the "constellation of unrelated symptoms" are not random, but are all caused by Central Nervous System dysfunction. Doctors old enough to remember ME say that it *is* Myalgic Encephalomyelitis. How can you prove those statements invalid?
"Do bitter, opinionated, stubborn people ever open their eyes?
*Grin* You didn't read this when you wrote it, did you dearie? "
Obviously not, or he/she/it would have to admit that opinionated, stubborn doctors won't open their eyes even when confronted with facts and research. They just deny, deny, deny and claim that the patients are lying.
Then comes the day that they are faced with another doctor, someone they respect, who has come down with this mystery disease, and they have to admit that maybe the patients were telling the truth all along.
"If I may, I suggest that you yourself read Osler's Web, but with an unbiased mind if possible. When an article/study is suppose to be addressing solid material adjectives such as "sneering' before terms makes it clear that the writer is not being objective."
Obviously, hon, you didn't follow that link. "Sneering" was not a word used in Osler's Web, it was a word used by a book reviewer.
But if you don't want to learn, far be it from me to force you to open your mind to the possibility that when CDC, for ulterior motives, says that a disease that afflicts men and toddlers is simply "depressed menopausal women", that attitude takes hold in the medical community, including journal editors.
WHY? 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.
"Merely because a person, be they a MD, PHD, chiropractior etc says something does not make it the truth."
That's right. Merely because an MD says that CFS is all in my head does not make it the truth.
I tell them that I haven't felt right since a virus in 1987. They refuse to believe it because it doesn't fit what they want to hear, so they write down "depressed" and remove all reference to the virologist who initially diagnosed me with Post-Viral Syndrome. I tell them I lost my job in 2000 because of steadily worsening symptoms; that's not what they want to hear, so they write down "hasn't worked since 1988", to prove that I am claiming to be disabled only because I don't like being back in the work force since the divorce. Apparently, I paid income taxes for 12 years when I wasn't working, just because I'm such a loyal American that I want to pay more than I owe?
I KNOW what happened; I was there. The doctors who claim I never had a virus, and am only depressed because I'm divorced weren't there. They don't know what really happened ... only what they tell me I should believe because what I say doesn't square with what they want to diagnose. Torture me and I'll continue to tell the same truthful story: my problems started with a virus, not with a divorce more than a decade later.
It has been pointed out repeatedly by other readers of this blog that it was senseless to try and talk logically here and they were correct.
The only 2 people who seem to comment here seem incapable of having a rational discourse. In fact you two seem to be locked into your high school days and mindset, where you are the only ones right and the rest of the scientific world is wrong and against you.
Okay. Fine. You are the smart ones. You know it all.
Congratulations, but don't question why few MDs want to deal with you, and its not because you know more than them. But I sure won't try and tell you that.
I'm going back to merely reading when I'm told there is a good laugh available.
(Stiles - 1 down, 14 to go ... I did my bit)
"Mrs. JoAnn Nancy Ware Abbott, for the long version."
I will vouch for that. I've known Jo since grade school. And she will vouch for the fact that I am Karen M. Campbell, currently living in California. Easily google-able, and internationally published on the subject of CFS. Recognized by NCF for my writings on the subject.
Neither of us suffers fools gladly, and anyone who tries to tell me that they know better than I do how I feel and when my symptoms started is a fool.
I know for a fact that Disability benefits are not enough to live on. My late friend Kat was getting $300 a month; her mother had to pay her bills. Another friend, an RN, is getting $645. I could be earning $50,000-$60,000 a year if I were well enough to work. Do I look stupid enough to give up that luxurious lifestyle for below-poverty level SSDI? Apparently, doctors are fool enough to think so, because I've been accused of faking in order to get those magnanimous benefits.
You are welcome to visit me in person and then make up your mind whether the objective symptoms I have are really there. Jo has seen them for herself.
"The only 2 people who seem to comment here"
Only me and Jo? Obviously you haven't been reading long, or you'd recognize Tom Schuckman and Allura as frequent commenters, and others as infrequent commenters.
You want to talk logic? Fine. I was there in 1987 when I had a virus. I know for a fact that I was seriously ill. A doctor who was not there told me I never had that virus, and expected me to ignore my own experience and swallow his lies. Where is his logic? No competent debater would denounce the evidence of first-hand experience in favor of hypothesis from someone who wasn't even there, who never asked anyone who was there.
Why do those who belittle the concept of FM [and CFS] offer virtually nothing more of an argument than their own feeble versions of "common sense," while repeatedly ignoring a huge and ever-growing body of evidence supporting its legitimacy? – Kevin P. White, M.D., Ph.D., Rheumatologist and Epidemiologist
"It has been pointed out repeatedly by other readers of this blog that it was senseless to try and talk logically here and they were correct."
It is senseless to try to tell me that you, who have never met me in person, know better than I do what happened to start this cascade of events and how I feel as a result of that virus.
You will NEVER convert me to believing that my symptoms started in 1987 because I got depressed over a divorce from a man I was not yet even married to. So, yes, it is senseless to argue with me over things that I know to be fact and you're just ASSUMING.
5000+ research studies worldwide say that I'm right, that there is a biological basis to CFS. It is senseless to try to convince me that those studies don't exist.
If your "logic" consists in telling me that I, millions of other patients, and hundreds of researchers are wrong because you choose not to believe what we see first-hand, then, yes, it is absolutely senseless to try to convince me of that logic because it's illogical. Researchers in the 1930s had already concluded there was a relationship to polio because ME patients were later immune to polio; that's a lot more logical that trying to tell patients they don't see what they see.
If "logic" consists only of badgering me until I admit that I am wrong about my personal experiences then you're right, it's pointless.
I was a college debater, and spent 20 years working in law, I am trained in critical thinking. If one doctor tells me that I'm faking to quit my job (a job I love and would never quit) and another tells me "I see a lot of people who have these symptoms after a severe virus", it makes more sense to me that the one whose diagnosis comports with the facts is the one I should believe. When I see research, like this Olson article, that confirms my personal experience, I believe it; I don't believe people who tell me what I should think/feel/experience based on opinion not backed by research.
No amount of telling me that I am wrong is going to convince me to believe your lies over the truth of my own experience. I see plenty of medical support for my stance that CFS is a physical, not psychological, illness. Including the CDC press conference last year where they finally started to back down on their ridiculous stance.
The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd. - Bertrand Russell
Patients at opposite ends of the country, with no intercommunication, described the same onset, the same symptoms. It's not random or mass hysteria if the newest patient hasn't heard of it. That proves it's "utterly absurd" to claim it's anything other than a logical connection to a severe virus.
David Bell, M.D., considers the word "fatigue" inappropriate since it is defined as a response to exertion that is relieved by rest, whereas CFS "fatigue" may result from little or no exertion and is not substantially relieved by rest.
...The CDC agreed to study the matter [of a name change] but later announced
that the adoption of a new name is premature. In a catch-22, the present name
trivializes the illness, thereby discouraging the research funding needed to
uncover the pathophysiology of the disorder, which would help determine a more
accurate name.
Nancy Klimas, M.D., at 11/3/06 CDC Press Conference:
“there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers.”
There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non-neurological complications affecting the liver, cardiac and skeletal, muscle, endocrine and lymphoid tissues are also recognized. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over-exertion. – Dr. Elizabeth Dowsett
Who are you to call these three experts wrong?
Since our know-it-all Dr. Passi apparently missed it, I'll repeat an observation by Dr. Richard Bruno from another post:
"we're finding the same sorts of things in ME as in polio ... if it quacks like a duck and it walks like a duck ... what else could it be? It's not possession by demonic forces."
I have seen polio/post-polio first-hand. Have you? I see the same things in myself as I saw in the polio patient I spent many many hours with. The things that helped her, help me. That's enough logic to tell me that a link between the two should be explored. Dr. Bruno, Dr. Dowsett, Dr. Ryll, and others have done that.
Before there was a test for the virus, polio patients were also told it was all in their heads. Suddenly, when there was a blood test to prove it, the medical community came around and stopped blaming the patient. Instead of learning from that experience, they're simply repeating the same mistake in telling ME/CFS patients that because no blood test exists for their virus, there is no such disease, and will, eventually, have to backtrack on that lie. CDC is already starting to backtrack (see Dr. Klimas quote in previous comment).
I definitely know it's not demonic possession. But it sure does quack like a duck.
My last comment -
I never stated I doubted the existence of CFS/ME.
I merely pointed out how you blindly strike out against the vast majority in the medical field.
Your righteous indignation at what you perceived and distorted my comments to mean merely quantifies my position which is that you are of one mindset, that being that you feel you are vastly superior and the world especially the medical aspect of it is out to get you for no reason at all especially any of your own doing. That 99% of the health professionals that have been blessed with you as a patient have egos that allow them to let a patient suffer and deteriorate just so the professionals do not have to admit being wrong.
Okay. You are right. You converted me. We are all bastards. Oh, and so are all the disability judges. Can't forget them.
Maybe that will help you sleep tonight.
Good luck gaining whatever it is you are after.
I've taken enough good-natured flack at trying to be resonable and am out of here.
"That 99% of the health professionals that have been blessed with you as a patient"
I have seen a number of competent doctors who recognized CFS and took me seriously when I said I was happy, healthy and active until I had a virus in 1987, and it's been downhill ever since. Those who were competent and treated me with respect are not the problem, and I value their assistance.
The problem is that I also saw some incompetents who refused to believe even that I was diagnosed by a virologist; two of them said things outright about women faking illness because they don't want to work. Such prejudice has no place in medicine. Others just lied in writing about me. That disrespect for me and disregard for the truth is the problem.
Maybe you missed the part where I was given a prescription for something I shouldn't take, and two days later went to a doctor I trust. (Yes, I trust some doctors.) He asked "are they trying to kill you?" and made it real clear that he would not allow any member of his family to go to that medical group for just the reasons I complain about. Does that doctor also hate doctors? Thank God he convinced me that going back to them could be fatal.
But I know you and your sidekicks don't want to hear that SOME doctors are incompetent and that incompetence can cause patients permanent injury.
Oh sweet jesus .... she's using that line again.... now it's not only AIDS patients who were told it is all in their head but polio patients also.
Where does she come up with these suppositions? Does she honestly think anyone even those with no medical knowledge believe her when she makes assine statements like this?But don't ask her because a) it is too old to be documented on the web or b) the articles she has to back up the statement are buried somewhere.
I know if a certain someone on unit 9 sees this ......
"she's using that line again.... now it's not only AIDS patients who were told it is all in their head but polio patients also. Where does she come up with these suppositions?"
From doctors. :)
Dr. Bruno's book "Polio Paradox" to be precise. Among others.
It's also documented that MS patients were initially told it was all in their heads. "Dr Mary Schweitzer, associate professor at the Department of History at Villanova University - wrote: "Only a few decades ago, patients with multiple sclerosis or infantile paralysis (polio) were sent away to mental hospitals, diagnosed with 'hysterical paralysis.'" I'm sure Mary would be pleased to give you her sources.
"Disbelief continues to pervade the medical approach to conditions where the
etiology and pathophysiology remain elusive, and medicine is replete with
the tragedies of those whose diseases awaited medical recognition. And it
has become far too convenient and acceptable to fall back on psychological
models when the "answers" are not simple or obvious. It was not long ago
that multiple sclerosis was called "hysterical paralysis" http://www.ncf-net.org/forum/InTheMedia012003.html I'm sure NCF will also happily tell you their source for that statement.
I saw it rat, I saw it.
Only you forgot c) the people who told her their docs told them the polio was all in their head have died.
I gotta say I admire Drew (he outed himself here after all - fool!) for being so kind and restrained in his responses here. But hey for those of us who know him, what words do you think he had to erase before he came up with using the term characters for these ..... individuals?
It's also documented that MS patients were initially told it was all in their heads. "Dr Mary Schweitzer, associate professor at the Department of History at Villanova University - wrote: "Only a few decades ago, patients with multiple sclerosis or infantile paralysis (polio) were sent away to mental hospitals, diagnosed with 'hysterical paralysis.'" I'm sure Mary would be pleased to give you her sources.
Go ahead. Cite her sources. If this was in any sort of reputable journal, book or publication they will be listed.
"Polio Paradox", page 224, Dr. Bruno writes:
"polio survivors were confronted by doctors' ignorance about PPS, their disinterest and disdain. Many physicians dismissed new symptoms as psychosomatic. ... a quarter of polio survivors reported being told by physicians that the symptoms were "all in their minds" ... In Mary Westbrook's 1991 survey polio survivors reported that doctors replied "rubbish" when they were shown articles on PPS. ... Unfortunately, little has changed in twenty years ... polio survivors are still being told by doctors that they're lazy, crazy, fat, old or just plain lying. As if the unexpected emergence of PPS were not abuse enough, doctors continue to thoughtlessly and needlessly add new chapters to the volumes of emotional abuse polio survivors have already experienced."
p.295 "Even more disturbing is that doctors choose to ignore more than 80 years of research indicating that ME, and its American cousin CFS, are very likely caused by one or more of the enterovirus. More than polio survivors with PPS, those with ME and CFS have been dismissed as lazy, crazy or outright liars by the medical community."
Well we know one of his favorites (loons) was definitely used before discarded. And of course *** censored!! ****
And btw I can't believe you people are feeding this loon <BG>
"Polio Paradox" p.313, Dr. Bruno writes
"How many polio survivors, chronic fatigue and fibromyalgia patients have been discarded by doctors who whought them to be lazy or faking when an antidepressant didn't cure their fatigue, or when physical therapy on a treadmill or an exercise bike made weakness worse, not better? Unfortunately, the fact that polio was not cured by the vaccine was a slap in the face to the medical establishment, and polio survivors' atrophied muscles, braces and crutches are evidence that doctors are not gods, omniscient and omnipotent. The emergence of PPS gave a slap to the other cheek, reminding doctors of their limitations as mere mortals. In this new millennium medicine must not be about doctors' egos and their ability to "cure" disease. Medicine must become health *care*, where the goal is not curing patients with disabilities but helping them feel well and have a better quality of life."
Christ I'm trying to be patient with you but damn if you don't make hard.
You say you are a researcher. You endlessly maintain your high intelligence.
Where the hell is it?
This is nothing more than copied quotes, with nothing cited that any professional would say comes even close to validating your statement. Yet you offer up this dribble as proof? You claim yourself to be a professional and this is what satisfies you to present as an answer? A fifth grader could have come up with this.
But hey passi409 has it right. You are correct. You is smarter den all of us.
"Polio Paradox", page 224, Dr. Bruno writes:
"polio survivors were confronted by doctors' ignorance about PPS, their disinterest and disdain. Many physicians dismissed new symptoms as psychosomatic. ... a quarter of polio survivors reported being told by physicians that the symptoms were "all in their minds" ... In Mary Westbrook's 1991 survey polio survivors reported that doctors replied "rubbish" when they were shown articles on PPS. ... Unfortunately, little has changed in twenty years ... polio survivors are still being told by doctors that they're lazy, crazy, fat, old or just plain lying. As if the unexpected emergence of PPS were not abuse enough, doctors continue to thoughtlessly and needlessly add new chapters to the volumes of emotional abuse polio survivors have already experienced."
p.295 "Even more disturbing is that doctors choose to ignore more than 80 years of research indicating that ME, and its American cousin CFS, are very likely caused by one or more of the enterovirus. More than polio survivors with PPS, those with ME and CFS have been dismissed as lazy, crazy or outright liars by the medical community."
"Go ahead. Cite her sources. If this was in any sort of reputable journal, book or publication they will be listed."
I know Mary's thoroughness as a researcher and writer, and I am sure that she had sources for her statement.
Since it's her statement, not mine, I cannot cite her sources because I don't have them. You are welcome to take this matter up with her if you require sources for that statement.
NCF makes the same statement, and I'm sure their resident lawyer wouldn't let them make the statement without adequate support for it. Again, you are welcome to contact them directly to request their sources. I am not here to do your research for you. I have plenty of research of my own to do.
"This is nothing more than copied quotes"
You want documentation of where I get my ideas, I give it to you. Then you're not happy because I'm copying quotes from doctors and other experts instead of making up my own statements?
This is where I get my ideas: from reading books and research by doctors who have spent years studying the subject. I can quote those books and research to you if you don't like my summaries. But apparently you don't like direct quotes, either.
As your friend "Doctor" Passi has claimed, it is pointless to argue with you people because the logic of citing experts and quoting them to you runs into your stubborn refusal to accept anything you are told which conflicts with your personal opinion.
Each and every one of you who disputes the accuracy of research or books quoted in this blog is welcome to discuss those matters with the people who did the actual research; they know more about it than I do and can direct you to their sources, which I cannot.
Bullshit. And you know it. And you always go hide behind your repertoire of excuses and passing the buck. Anything but say that you are bullshitting or wrong.
What an idiot you are. And it shows. You don't have the sources to back up your statements but oh they are true! Yes, they are! You believe her! You don't need sources, afterall, do you? She says what you want to hear - so its all true! And the rest of the world should believe too! Come follow the Pied Pipper! Fairydust for all!
Yeah, you're a real professional. It shows.
Total loon.
I know Mary's thoroughness as a researcher and writer, and I am sure that she had sources for her statement.
Since it's her statement, not mine, I cannot cite her sources because I don't have them. You are welcome to take this matter up with her if you require sources for that statement.
"You don't have the sources to back up your statements but oh they are true!"
My sources are the writings of Dr. Mary Schweitzer, NCF, and Dr. Bruno. They would know what sources they relied on. I don't have Mary or NCF's bibliography.
You can reach Dr. Bruno at PPSENG@AOL.COM and ask him for documents in support of any statement he's made, or of my statement that polio was initially attributed to psychological reasons and I am sure he'll be happy to oblige. I've always found him very willing to respond to questions. If you tell him you're a medical student, he'll probably be even more eager to contribute to your education.
As, I'm sure, would be Dr. Lapp, Dr. Bell, Dr. Cheney, Dr. Klimas, etc. They have the medical expertise to explain exactly what the research means in however much depth you need it explained to your satisfaction.
Most medical research articles now include contact information. Use it. Don't ask me to contact these people on your behalf, because you won't believe what I pass along. Get it straight from the horse's mouth.
http://www.cfids-me.org/marys/elaine.html
"Hopefully, the media penchant for declaring CFS a psychosomatic illness will soon come to an end. As it becomes easier to test for the defective RNaseL discovered by Dr. Suhadolnik, the vague term "chronic fatigue syndrome" will be supplanted by one that better reflects the physical basis of the multiple symptoms of the condition, Suhadolnik's Disorder, perhaps. Only a few decades ago, patients with multiple sclerosis or infantile paralysis (polio) were sent away to mental hospitals, diagnosed with "hysterical paralysis." Within the next few years, a diagnostic test should be on the market that can prove to the most determined skeptic that the symptoms of chronic fatigue syndrome do indeed have a basis in a serious physical disorder. In the meantime, how many innocent individuals will suffer when denied medical care or insurance benefits out of a misguided conviction that this disease could easily be "cured" if only the patient would accept classic psychoanalysis? When CDC one day issues a press release confirming the validity of a test that can "prove" CFS patients have a physically-caused illness, will Professor Showalter, Princeton University, and Columbia University Press remember to offer an apology?"
Essays and Testimony by Mary Schweitzer http://www.cfids-me.org/marys/
Contact me-cfs@comcast.net Please put "ME-CFS" in the subject line. Thank you.
http://www.post-polionetwork.org.au/news/ppn31.html
I was interested to read of the high rate of misdiagnosis particularly among adults. One pregnant woman whose symptoms included stiff neck, pain, inability to pick up objects or to walk properly was prescribed a painkiller by her doctor and told to keep busy. 'He shooed her away and chided her for malingering'. Later that day she was hospitalised in a delirium from polio. When her husband developed the same symptoms the doctor told him not to worry. As they were the same symptoms as his wife's, they must be psychosomatic!
http://linguafranca.mirror.theinfo.org/9704/ip9704.html
"As a medical historian, Showalter surely knows that before a disease is properly understood sick patients often meet maddening resistance from doctors. Knotty autoimmune diseases like lupus (which primarily affects women) often take years to diagnose properly‹early symptoms like fatigue and sun sensitivity can resemble malingering. Throughout much of this century, doctors dismissed multiple sclerosis as "the faker's disease." And in the age of AIDS, who can doubt that some syndromes can turn out to be devastatingly real?"
Again, you are welcome to contact the writers of these documents directly to request their original source documents. They would have them, I don't.
"Anything but say that you are bullshitting or wrong."
That's right. I will not lie and say that I am bullshitting or wrong, because I am neither.
5000+ medical studies say that I am right.
Dr. Mary Schweitzer has written a book on CFS. She has even more information in her files than I do. If you contact her, I'm sure she'll inundate you with material to back up everything she and I have said.
You and your little friends, on the other hand, are clearly bullshitting, because you have to rely on that desperate debater's trick of saying "you're wrong" without offering one shred of evidence to support that claim. Because you CAN'T prove that I'm wrong. You've never requested the medical records to analyze whether I'm telling the truth about how statements were twisted between the handwritten information and the dictated notes.
And when I offer you support for my statements, you dismiss it as not credible for the same reason the judge dismisses evidence: because if it doesn't agree with you it can't be right.
The following link is to a condensed Grand Rounds presentation by Dr. A.
Martin Lerner given to physicians and medical professionals in August of 2007
on the topic of Chronic Fatigue Syndrome:
http://cfsviraltreatment.com/video/index.html
Dr. Lerner is available through his website to debate with you whether CFS is a physical or psychological condition. Though I'm sure you don't have the chutzpah to contact him and be proven wrong.
www.TymesTrust.org (The Brief, March/April 2005) writes:
"The belief that doctor ‘knows best’ was never taken for granted by all, despite the myth. ... doctors are fallible, just like anyone else. Doctor may well know best in certain circumstances, but by no means all. An attitude of superiority is misplaced"
I didn't write that, someone at Tymes Trust of the UK did. But is certainly bears repeating that DOCTORS ARE FALLIBLE. AN ATTITUDE OF SUPERIORITY IS MISPLACED.
The sooner you kiddies learn to swallow your ego and admit that sometimes a patient is better-read on her own disease than you are, the better for all concerned. The patient won't suffer needlessly and you won't get sued for malpractice. Because there are doctors out there who will tell the patient, as I was told, that malpractice was committed when certain medication was prescribed without regard to my safety and again when a reasonable request for the proper medication was refused. Not every doctor can be relied on to remain silent and protect incompetent doctors -- some of them really do put the patient first.
Anthony L. Komaroff, M.D.
Steven P. Simcox, Patrick A. Clifford and James H. Higby Professor of Medicine
Editor in Chief, Harvard Health Publications
Brigham and Women's Hospital
Harvard Medical School
Harvard Health Pubs. Countway Suite 602
10 Shattuck St
Boston, MA 02115
Telephone 617/432-4714
Fax 617/432-4719
Dr. Komaroff counted 4000+ international CFS studies proving a biological basis for CFS. I'm sure he has a list he can e-mail to you. (I assume Harvard Professor and Editor of Harvard Health Publications is adequately reputable background for you to believe him?)
His count has since been supplanted by Kenny de Meirlier's count of 5000+. I'm sure Dr. Komaroff can provide you with Dr. de Meirlier's e-mail address in Belgium so you can verify his count.
Again, as a Professor of Medicine, Dr. Komaroff is better qualified than I to debate with you the merits of the medical evidence. I put it out here for people to make up their own minds about it, and for them to discuss it with their doctors, not to explain it any further than the original author did.
Good grief people, don't any of you ever sleep?
Amazing the levels of incivility here. And anger. Pity too, a good, rational arguement should be exhilarating and thought provoking.
M: An argument isn't just contradiction.
A: It can be.
M: No it can't. An argument is a connected series of statements intended to establish a proposition.
A: No it isn't.
M: Yes it is! It's not just contradiction.
A: Look, if I argue with you, I must take up a contrary position.
M: Yes, but that's not just saying 'No it isn't.'
A: Yes it is!
M: No it isn't!
You started this with insulting Karen by denigrating her ability to think rationally- "It must be exhausting enough simply being right all the time. So sad." When she tells you she gets her information from doctors, you ask "What doctors?"; she names them and you state that this isn't proof enough. She lists the books they have written and where they practice/teach; still not enough. She gives you links to their websites and email addys so that you can ask for info straight from the horses mouth, but you complain that these aren't proof. I strongly suspect that should she go to the nearest univeristy medical library spend time reaserching the publications area and give you the journal and publication dates cited by the doctors and books she has quoted that you would still not be satisfied.
Since I know that her time and energy is very limited, what say that >I< go to George Mason Uni or George Washington Uni hospitals med library and get you these publications- would that be enough, or would I need to quote them as well? Really, in all seriousness, what proof do you need at this point in time?
And Karen- if my offer is ignored, Matthew 7:6, lol
JoAnn (note the real name) Abbott
"Since I know that her time and energy is very limited, what say that >I< go to George Mason Uni or George Washington Uni hospitals med library and get you these publications- would that be enough, or would I need to quote them as well? Really, in all seriousness, what proof do you need at this point in time?"
Um, Jo, they CLAIM to be medical students. Therefore, they have a well-stocked medical library right there on campus with them.
It's clear that they're just too LAZY to walk over there and get the proof for themselves and they want a sick person to do it for them because they're LAZY.
Or maybe, like one of my doctors, they're AFRAID that they'll find proof that they were wrong and I was right, and therefore, they're not going to do the research for fear of having to change their prejudices.
Only people who are LAZY themselves would attribute biological illness to laziness and desire not to work. Anyone who loves their job would instantly understand that people who love their jobs aren't looking for any excuse to quit, and (like I did) will continue to drag themselves in even though it makes them sicker. My specialist understood that; my lazy ex thought quitting his job was a great idea.
Yeah, but I >like< scrounging about in med libraries- I spent almost 7 hours in the U of Pittsburgh med library this past spring when I was in the city gathering data for that 40 page research paper I did. I can read all day and half the night if they would ony let me bring food in there, lol. Gimme a couch to snooze on periodically and I will stay even longer.
Besides, I am getting interested in reading up on the more advanced studies for my own info now.
*Pokes passi*
Well? Do you want me to go research in the local Medical University stacks or not? Is there a particular journal you would prefer for me to examine? Here I am, willing to spend hours of my own time sneezing around dusty bookshelves but I haven't heard if my doing so would be considered proof enough for you. I am going to start with JAMA and NEJM, since they are the biggies. Maybe Lancet too...
"Do you want me to go research in the local Medical University stacks or not?"
No, they don't. They're not here to learn, they're here to verbally abuse me. They've said so themselves, that they're only here for the laughs because I say things that contradict their beliefs.
And that's fine. After discussions with Nat, we decided to leave the abusive comments so that when CFS becomes fully accepted as a biological disease, we can prove who refused to accept that in the past, and how violent the opposition was. It'll prevent patients suffering what I did, going to a doctor who "says" he wants to help when he really wants to sabotage you because he doesn't believe in CFS as an entity separate and easily distinguishable from depression.
Let them continue making public fools of themselves, because those comments are staying here permanently to make sure they are eventually recognized as fools who cannot accept the immense evidence that CFS has more in common with MS and polio than it does with depression.
The last laugh will be on them.
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