The Fukuda Defintion, Negligence, & Webster’s Dictionary

The Fukuda Definition, Negligence, & Webster’s Dictionary

Friends in the world of M.E. and other friends,
Have you ever really analyzed the 1994 Fukuda Definition for CFS?
This is a very interesting analysis!

If you analyze the 1994 Fukuda Definition for CFS, its actually a negligent document.  You can actually prove that its a negligent using a Webster’s dictionary, you don’t even need a medical textbook.

When I finish explaining this, you will agree and say “I never thought of that.”

Back in 1994 when I first received a copy of the Fukuda Definition for CFS, I looked it over, saw I had most of the symptoms, thought ok, and then I put it away in my file with all of the rest of the information I was gathering at the time about the illness.

I didn’t really pay attention to the details of all of the illness symptoms because not everyone has all of the symptoms of any particular illness.  Because not everyone has every single symptom of any particular illness, when I saw the symptom called “malaise,” I thought, thats one of the symptoms I don’t have, because none of the symptoms I had included “malaise.”

I think probably everyone who received that document and read it over did the same thing. When a patient received the document, the patient looked at the list of symptoms and looked for which symptoms they had and counted them.  If they were a health practitioner such as a doctor, they read the document to become familiar with the symptoms so they could diagnose a patient as it was a guide for the doctor to use sort of like the CDC toolkit on the CDC website is supposed to be a guide.  We didn’t have the internet then, so we didn’t have a CDC toolkit or website.

Just to clarify, i’m saying “CFS” and not M.E. because that’s what was the illness was being called here in the U.S. in 1994, and that’s what was on the document that was said to be the case definition for the illness.

What we also have is a case of words being used interchangeably. Words that are used interchangeably can be very harmful when it comes to an illness definition. In the case of the 1994 Fukuda Definition for CFS, something very significant was overlooked. Something very significant was overlooked because of words that were interchangeably used. Because of words that were interchangeably used, we have a whole patient community, who are disabled and homebound. We aren’t even sure of the exact numbers because the CDC’s numbers are not correct.

So which words am I talking about?

What I want to point out first is, CFS or Chronic Fatigue Syndrome is not the name of the illness. The actual name of the illness is M.E. or Myalgic Encephalomyelitis. If you didn’t know this, I can almost hear your thoughts. Yes, the name of the illness is Myalgic Encephalomyelitis. Where did the name Chronic Fatigue Syndrome come from? I really can not tell you, I can only tell you that the leader of the definition team, who was an employee of the NIH changed the name from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome.

The next question I will answer “What actually is M.E. or Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis (ME) is a neuroimmune disease with serious immune and cardiovascular abnormalities with resulting serious CNS (central nervous system) consequences due to brain injury. The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, and cancer. The pain, cognitive impairment and exhaustion are often literally unspeakable. Most times ME strikes relatively quickly (within hours, days, weeks). Once active and productive children and adults are robbed of vitality, with disability ranging from completely bedridden to somewhat functional. Variable disability usually progresses to premature death.”

We not only have a case of words being used interchangeably, there is a bit of a problem with the name change. We will get back to the interchangeable words after we finish talking about the names used for this illness and then the significance of the interchangeable names.

The description of M.E. speaks for itself, I don’t need to explain that any further. If you want to read further about M.E., you can click here to read about it.

If you think of those 2 names, which name would you prefer the illness to be called if you had the illness? M.E. or CFS.?

If you had to tell a doctor or someone that you had an illness called Chronic Fatigue Syndrome, do you think they would take you as seriously then if the name was called Myalgic Encephalomyelitis?

Do you think the treatment or care you receive would be any different if the name was called CFS instead of M.E.?

What do you think when you hear the name Chronic Fatigue Syndrome?

What do you think your family or your friends would think if you told them today that  you had an illness called Chronic Fatigue Syndrome?

What do you think many doctors think when they hear the name Chronic Fatigue Syndrome if they aren’t familiar with the name?

If you had to choose, which name would you pick, Chronic Fatigue Syndrome or Myalgic Encephalomyelitis?

Those are interesting questions to think about because one day you may be faced with this condition or someone in your family, your husband, your wife, your children, etc.. The people reading this who have the illness know what I am trying to point out.

Think about what the patients who have this condition feel when they have to say “Chronic Fatigue Syndrome” as opposed to “Myalgic Encephalomyelits.”

Do you think the patients may have been treated different because of the name Chronic Fatigue Syndrome?

Do you ever think patients would be subjected to abuse from medical people because of the name of their illness?

Do you think patients would be harmed because of the name Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome

In 1994 a case definition was published for CFS that was called The CDC (Fukuda 1994) Definition for Chronic Fatigue Syndrome. The list of symptoms on the original document of the 1994 Fukuda Definition for CFS looked were listed this way:

•substantial impairment in short-term memory or concentration;
•sore throat;
•tender lymph nodes;
•muscle pain;
•multi-joint pain without swelling or redness;
•headaches of a new type, pattern, or severity;
•unrefreshing sleep; and
•post-exertional malaise lasting more than 24 hours.

To be diagnosed with CFS, according to the 1994 Fukuda Defintion for CFS you had to have 4 of those symptoms.

If you look at those symptoms, where would you look first for the most important symptom, the top of the list or the bottom of the list?

That is actually an important question because where would most people automatically look?

Most people whether they are a doctor or a non medical lay person would look at the top of the list.

The CDC finally took notice after it was brought to their attention, and probably thought the same thing, and changed the order of that list May 14, 2012. If you look at the CDC Website, the list of symptoms are listed this way since May 14, 2012:

•post-exertion malaise lasting more than 24 hours
•unrefreshing sleep
•significant impairment of short-term memory or concentration
•muscle pain
•pain in the joints without swelling or redness
•headaches of a new type, pattern, or severity
•tender lymph nodes in the neck or armpit
•a sore throat that is frequent or recurring

If you look at the 2 different lists, the symptom that was on the bottom of the original list, “post-exertional malaise lasting more than 24 hours”, was put on the top of the list the in 2012.

It took 18 years for the CDC to make that change!

Why did the CDC change the order in which the symptoms were written changing the order to where the symptom that was originally on the bottom of the list to the top of the list?

The symptom of “post-exertional malaise lasting more than 24 hours” is actually the key hallmark symptom of the illness. The way the definition presented the list of symptoms in 1994, that symptom was on the bottom.  That information was brought to the attention to the CDC, but the order of the list wasn’t changed by the CDC and put on their website until May 14, 2012.

Why would where that symptom be listed be a problem?
The symptom was originally listed on the bottom of the list.
The word that is used in the symptom is called “Malaise.”

We know the symptom was listed on the bottom of the list and we know the word that was used was the word “Malaise.”

What is wrong with the word “Malaise”?

We have to take a look at the meaning of the word “Malaise” to determine the reason.

“Malaise”

Webster’s Dictionary:

Ma`laise´

n. 1. (Med.) An indefinite feeling of uneasiness, or of being sick or ill at ease.

Noun 1. malaise – physical discomfort (as mild sickness or depression)
Synonyms: unease, uneasiness

Why would doctors or health practitioners possibly ignore that particular symptom?

According to the definition above, the word “Malaise” would not be considered something serious, something mild as in mild sickness or could even be something considered psychological such as depression.

The symptom was also originally placed on the bottom of the list..

Most people, whether doctors or lay people both groups are going to look at the top of the list first, because the most important or key symptom of an illness is usually placed at the top of the list, the least important on the bottom of the list.

Post-exertional malaise lasting more than 24 hours” was listed on the bottom of the list, and the word “malaise” was the word used to describe the symptom. Because of those 2 factors, that was something that was very easily missed.  It was also something that was very easily dismissed as a key hallmark symptom of the illness.

I want to point out that most health practitioners at the time, in 1994, in this country did not have knowledge of M.E., because they did not have knowledge of the M.E. epidemics because M.E. was not taught in the medical schools in this country or in the medical textbooks. The leader of the illness definition team did have knowledge of M.E. because he had access to  the documents of all of the M.E. epidemics that were documented since 1934 and they were used during the redefinition effort at the NIH as well as the CDC.

The Interchangeable Words!

What are those interchangeable words and what is the significance of the interchangeable words?

The three interchangeable words involved are Malaise, Fatigue, and also Weakness.

We have to look at the meanings of those three words.

We already went over “Malaise” but I will put the meaning here again.

Malaise

Webster’s Dictionary:

Ma`laise´

n. 1. (Med.) An indefinite feeling of uneasiness, or of being sick or ill at ease.

Noun 1. malaise – physical discomfort (as mild sickness or depression)
Synonyms: unease, uneasiness

I personally never attributed my symptoms to malaise, because the symptom was not malaise, it was more severe than malaise.

Fatigue

1fa·tigue

-weariness or exhaustion from labor, exertion, or stress

-the temporary loss of power to respond induced in a sensory receptor or motor end organ by continued stimulation

I always thought fatigue was ridiculous too because back then, I wondered why they picked “fatigue” for the name, because our symptom was more severe than fatigue.

Anyone can feel weary if they are tired, and have a lack of energy too. A lack of energy can be any condition. Our symptom is more severe than just a lack of energy, because people can still work with a lack of energy, they can still get through the day.

Weakness

ˈwiːk.nəs

“lacking strength or energy, or likely to stop working 

“Alack of physical or muscle strength and the feeling
that extra effort is required to move your arms, legs, or other muscles.
If muscle weakness is the result of pain,
the person may be able to make muscles work, but it will hurt.”

When we are crashed, or post exertional anything for that matter, what happens?
We are in bed because we cant move.
There were times when I personally was so weak, I could not sneeze, my body was too weak to go through the motion to actually sneeze.

Our symptom is an abnormal severe total body muscular weakness with little to no functionality, after any type of activity whether trivial, cognitive, exertional, exercise, with an abnormal recovery response of up to 7 days, and even weeks or months, and that’s what makes the illness a debilitating, disabling illness. As well as the other symptoms we get with this illness including immune abnormalities, at the same time that we experience the abnormal severe muscular weakness with an abnormal recovery response that are exacerbated and cause debilitation after activity whether trivial, cognitive, exertional or exercise.

Malaise and Fatigue are like a gust of wind compared to weakness.

That’s the difference between the 3 words that are being used interchangeably, they are not the same, they are different.

That’s why the Fukuda Defintion is incorrect, why its negligent, and can be proven negligent with a Webster’s Dictionary just like I demonstrated above.

You don’t even need a medical book, you just need a dictionary!

This is also why people are homebound and disabled, because of that incorrectly worded definition that doctors didn’t pay attention too because they didn’t equate it with what we were actually feeling.

That’s why there were many doctors who said to people they need to exercise, because they didn’t understand what the patients were talking about when the patients said they felt worse. The CDC said to tell the patients to keep exercising and that’s what the doctors did.  This is all because of the interchangeable use of the words “fatigue” and “malaise.”

Doctors also said patients were depressed because Malaise is actually a psychological word too.  Doctors thought patients were depressed, that post-exertional malaise could’ve been interpreted as depression after exertion.

It’s also actually an example of what I call “hear-say” medicine, they “hear” what other practitioners are saying and then they start preaching the same thing. Instead of just going by hear-say, these practitioners should of done a little research and check the actual medical books in regards to the epidemics to see if the document they received, which was the 1994 Fukuda Definition for CFS was indeed correct. That’s what should’ve been done when that definition came out in 1994. Practitioners should’ve double checked to see what they were reading was actually correct.

The thing that was always told to doctors and nurses and that was , always double check, always “CYA.”

If you don’t double check and “CYA,” you will be in danger of not only harming patients, but getting sued and losing your medical or nursing license.

Malaise shouldn’t of even touched the definition of this illness!

The use of the word “malaise” actually harmed and permanently disabled people because it was interchangeably used to make the illness look less severe and even psychiatric.

Notice how doctors that aren’t used to saying M.E. keep saying “Chronic Fatigue”, because they were told the name of this illness was “Chronic Fatigue Syndrome” and that is what it was being called for 20 years.  They need to practically be “reprogrammed” to call it the right name!

This is the same thing that is happening with those interchangeable words.
They have used those words so interchangeably, they don’t even know the difference.

If these people are going to be in the “helping people profession”, they need to know the difference in the meanings of these words and use them correctly. The interchangeable use of the words has harmed patients.

The question I ask anyone who has read this,

Should these patients, ME, CFS or whatever name the illness is being called today,  or any other patients for that matter, have been treated the way these patients have been treated?

Aren’t these patients people too?

There is something called “Do No Harm” which was promised by all health practitioners including myself when we graduated our nursing and medical programs.

Did these patients escape “harm”?

As far as a patient being diagnosed with a diagnosis of “Chronic Fatigue Syndrome”, “Do No Harm” was thrown out of the window 20-30 years ago.

What makes this patient group any less deserving of the same patient care as any other group?

Why was this patient group treated in such a fashion?

This patient group was treated this way, because of the name of the illness called “Chronic Fatigue Syndrome” which had nothing to do with fatigue.

And,

Because of the incorrect placement and wording of the key hallmark symptom of the illness called “Post-Exertional Malaise” in which malaise had nothing to do with that symptom, this patient community was harmed, this patient community suffered abuse from medical people, this patient community suffered the lack of care or no care, this patient community suffered not only disability, but this patient community are invisible because they are unable to leave their homes and many are unable to leave their beds.

Not only the 1994 Fukuda Defintion for CFS was negligent, but it was also a crime to humanity!

The reasons I described are probably the biggest reasons why this illness is in such a sad state of affairs!

Incorrect and interchangeable use of those simple words which the names of symptoms contributed to that sad state of affairs!

Will the patients get even as much as an apology?

At this point, I cant answer that question.

Dr Jose Montoya was quoted as saying:

“Hopefully one day, my dream is that our medical community will produce a formal apology to the patients that – not having believed them all these years – they are facing a real illness.”

I hope the same thing that Dr. Montoya hopes, that our medical community will apologize to this patient community who have not been believed and are ill, disabled and homebound.

 

“The Other Side Of The Stretcher” (c) 2014

 This blog is not for medical advice.
For medical advice, you must speak with your physician!

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About The Other Side Of The Stretcher

Nurse turned patient, but not by choice. I was became a Registered Nurse in 1985 when I was 21 years old. That career was cut short the end of 1994 when I was unable to work anymore because of the illness M.E. or Myalgic Encephalomyelitis. I have 3 adult children including twins, A daughter and 2 sons. View all posts by The Other Side Of The Stretcher

3 responses to “The Fukuda Defintion, Negligence, & Webster’s Dictionary

  • Erik Johnson

    Here is the real reason for the Fukuda definition
    By “rebasing” CFS on an abstraction, it was no longer a CDC response to an identified outbreak of ME at Lake Tahoe, people would no longer think
    of this outbreak as being the origin of the syndrome.

    CFS reverts to being whatever the CDC wants it to be.

    Straus’s relief was apparent in his letter to Fukuda.
    With the new definition in place, the syndrome was completely “disconnected” from the Tahoe outbreak.

    ———————————————————————–

    Stephen Straus writes to Fukuda:

    “Now that the definition is revised we could project at leisure what will come of it”

    “What I would most like to see is that fatigue is not abandoned as a subject for careful consideration
    because of further failures of CFS case definitions or frustrations arising out of shrill pressures
    to justify an entity of dubious validity such as CFIDS.”

    “Maybe we would have been smarter to have suggested that model (fatigue) to begin with rather than easing
    through a CFS hypothesis as a default pathway for a failed viral hypothesis.
    So be it”

  • TheOtherSideOfTheStretcher

    Hi Erik,

    Thankyou for responding.

    Stephen Straus had a mission, most definitely.
    He put a lot of thought into it.
    He went as deep as manipulating the words so fellow practitioners would ignore the gravity of the situation.
    That letter to Fukuda was the verification, maybe even a confession, we didn’t see a response letter so maybe Fukuda agreed with him, it would be interesting to know.
    Stephen Straus masterminded this.
    Stephen Straus masterminded this crime like a serial killer masterminds his crimes.
    I say crime because what was done here was a crime to humanity.
    How many people have been hurt by this “definition” if that’s what we can actually call is.
    How many?
    We wouldn’t have room for all of the names of the people we know If we started putting them here.
    But if you think about it, they are the victims of a crime. not an illness.
    They didn’t die or continue to be sick today because of an illness, they died or continue to be sick because of a crime, this crime….

    “Do No Harm”…what do those words mean???

    A doctor can help a person heal….
    A doctor can do the most harm, more harm than any killer could do.

    Stephen Straus caused more harm than a serial killer.

    He is no distinguished researcher as the NIH has made his out to be, even putting his painting in the NIH.

    No…definitely not a serial killer and if he thought so, he was no Ted Bundy. Ted Bundy looked good compared to this guy.

    Stephen Straus caused a medical holocaust that continues today.
    The people that agree with this, those “so-called” medical practitioners, are no better than he, they are the sociopathic followers of Stephen Straus’s anti-ME movement or cult if you will.

    Its interesting….the saying about pay-back, or the fool that says there is no God……

    Stephen Straus’s brother Marc Straus, an oncology researcher, he was a partner or a share holder of an MRI imaging center.
    Stephen Straus had a brain tumor, the type you have for years before it is diagnosed. It could’ve been diagnosed easily and years before via that MRI imaging center of his brothers, but it wasn’t, when he found out what was wrong with him it was too late.

    Well, if you think about that, pay-back is definitely what it is.
    And
    If Stephen Straus thought he was God doing this, Stephen Straus played the fool for sure!

  • Dead Men Don't Snore

    I totally agree that ‘malaise’ and ‘fatigue’ are grossly inadequate and misleading. Here in the UK we have the problem that although the term M.E. is commonly recognised it was so ridiculed in the media in the 80s and 90s that it is still considered synonymous with tiredness or malingering. The fact that many doctors now insist on calling it chrinic fatigue and assume patients who call it ME are trying to over-medicalise their symptoms in a bid for attention really doesn’t help matters. As soon as I tell people I have ME it is pretty much guaranteed that they will judge me because of old stereotypes that have since been medically disproven yet still persist in public perceptions.

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