What do you think of the IOM's new name for ME/CFS? VOTE!

What do you think of the IOM's new name for ME/CFS: SEID

  • Better than the status quo, but I wouldn't endorse it myself

    Votes: 27 16.9%
  • Better than the status quo, patients should get behind this

    Votes: 32 20.0%
  • No better than the status quo (most reseachers/clincians use CFS, occasionally ME/CFS)

    Votes: 19 11.9%
  • A waste of time

    Votes: 58 36.3%
  • Better than the status quo, but I'm unsure at this time whether I would endorse it myself.

    Votes: 24 15.0%

  • Total voters
    160
  • Poll closed .

Mij

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I don't think those are good reasons to dismiss Ramsay('s) disease. I know about Ramsay Hunt Syndrome as I have had a facial paralysis since the age of 5. I don't think it is sufficiently similar verbally to Ramsay('s) disease for the average person to confuse them. If this is considered to be the case, another word could be included, such as 'Ramsay's encephalopathy'. Maybe if someone could provide a link to Ramsay's original description of the disease we could use something that was his particular focus
Wouldn't Ramsay's Disease only include the sudden onset subtype?
 

nandixon

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@Sidereal
Neuroinflammation is not a specific disease, it's a term denoting inflammation in the CNS so it's notsomething you could use to name a disease.
I think it'd be fine to use it in a name provided it's made to be a sufficiently specific type of neuroinflammation, e.g.:

Systemic Exertional Neuroinflammatory Disease

or

Multisystemic Exertional Neuroinflammatory Disease

The same should be true with "neuroimmune" as well.
 

Sidereal

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@Sidereal

I think it'd be fine to use it in a name provided it's made to be a sufficiently specific type of neuroinflammation, e.g.:

Systemic Exertional Neuroinflammatory Disease

or

Multisystemic Exertional Neuroinflammatory Disease

The same should be true with "neuroimmune" as well.
Right, I just meant you couldn't call it "neuroinflammatory disease" or "neuroimmune disease". Those are really good names; pity you weren't on the panel.
 

Ecoclimber

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Lets not get all worked up over this without a thorough understanding and analysis of the issues. I feel one shouldn't even comment without first reading the entire IOM report on how they arrived at their analysis! Do I like it no! But as I said in earlier posts, the name is NOT set in stone and that they will revisit it in 5 years. Dr. Ronn Davis of Stanford whose son has ME/CFS, stated he feels it will take less time more like two years. Let's not delve into conjecture and speculation and conspiracies. There are patients that will never except any definition unless it has ME attached to it.

You are not going to get the ME designation. The evidence is NOT there. Charles Shepard stated this in his posting here::bang-head:
http://forums.phoenixrising.me/inde...-myalgic-encephalomyelitis.35504/#post-557267
I mean how is the ME label working out for patients in the UK?

The number one fact remains that a prestigious body of researchers has validated this illness as a biomedical disease. This means the aetiology is a systematic breakdown in the functioning within the organs of the body. It is NOT caused by a psych/social model of behavioral or social theories.

There are numerous research articles on immune dysfunction, mitchrondria celluar dsyfunction, CNS/ANS dysfunction, MRI's but MRI's can also point to other causes as well etc. but the research panel stated that there was not enough conclusive evidence or a definitive study that exactly pinpointed the cause. Although some research has suggested that inflammation of the central nervous system is involved, its role is not proven, and muscle pain is not as prominent as other features. Dr. Davis and Montoya of Stanford supports it. Bateman and Klimas supports it. The panel members reached an unanimous decision focusing on the hallmarks of this disease.

My concern is the fact of not excluding or stamping out for good the psychosomatic and psychiatric disorders as in Fuduka, CCC, ICCC. I feel this leaves the door open to an end around with the psych industry. I am also concern that pain was not included.

There are patients that state that they don't have some of these symptoms. Then, maybe they don't have ME/CFS. Every patient's description and treatment plan on PR could be considered anecdotal if it wasn't first confirmed by their doctor since there are no biomarkers for this illness.

My concern is information in the physicians toolkit. Will the P2P panel validate the IOM conclusions? Will the NIH increase research funding as mentioned in the report? Will the NIH and CDC change the toolkit and diagnostic criteria? What about the ICD codes?

For me, I am in a wait and see holding pattern.
I hate to see such a raging debate taking shape, splitting the patient community before all the evidence has been gathered and the final and complete decision has been decided.

My appologies for such a lengthy post.

==========================================================================
We can gain solace by these statements from the IOM panel and other doctors reactions.

"The IOM is such a prestigious body. It's the medical arm of the National Academy of Sciences. When the IOM talks, the medical community listens," Vernon said.

With the broad acceptance of a standard clinical definition, chronic fatigue syndrome patients could expect to see more support from physicians and, importantly, more coverage by insurance companies, Teitelbaum said.

People with chronic fatigue syndrome often have to convince their doctors that they aren't suffering from depression, even though their exhaustion has not left them depressed and they continue to enjoy many pleasurable interests -- just no energy to pursue them, he explained.

"You have no idea how frustrating it is to have a real devastating illness and have no name for it, to have people thinking you're a crazy person," Teitelbaum said. "Having a definition that really defines what a person has will help them get the care and support they need."

More than 1 million Americans have chronic fatigue syndrome, the CDC says, making it more prevalent than multiple sclerosis, lupus and many forms of cancer. CFS occurs most often in people in their 40s and 50s, and occurs four times more often in women than men.

Case definitions are great tools for epidemiologists, for disease hunters to get to the bottom of what's causing a malady, but they have to evolve in order to keep up with what you're finding," Vernon said.

Seeking and receiving a diagnosis can be a frustrating process for several reasons, including skepticism of health care providers about the serious nature of [chronic fatigue syndrome] and the misconception that it is a psychogenic illness or even a figment of the patient’s imagination," the panel wrote. Less than a third of medical schools include the condition in their curricula and only 40 percent of medical textbooks contain information on it, the experts said.

The cause remains unknown but symptoms may be triggered by an infection or "immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals and, rarely, blood transfusions." Clayton said mononucleosis is "a major trigger" of chronic fatigue syndrome among adolescents, but little is known about causes beyond that.

Most people with ME/CFS suffer from extreme exhaustion, made worse by even mild physical or mental effort. After a crash, known as postexertional malaise, recovery may take days or weeks, and sleep brings no relief. These symptoms are recognized as key defining characteristics of the disease, according to the new criteria. Problems with speaking, thinking and remembering, known as cognitive impairments, are also widespread among patients.

Some sufferers have good days and bad days; others are confined to bed for months or years. Many people with the disease experience severe headaches, muscle pain and sensitivity to light and noise.

Dr. Ellen Wright Clayton, a Vanderbilt University specialist on genetics and the law, who chaired the committee and said it "issued a clarion call" for physicians to do a better job.

Most patients develop the syndrome after contracting a cold, flu or other viral illness, but other environmental or toxic exposures may act as triggers. Although no cause has been identified, people with the illness may suffer neurological, hormonal and immunological impairments.

"It's time to stop saying that this is a just figment of people's imagination. This is a real disease, with real physical manifestations that need to be identified and cared for," Committee Chair Ellen Wright Clayton, MD, JD, professor of pediatrics and director of the Center for Biomedical Ethics and Society at Vanderbilt University, Nashville, Tennessee, told Medscape Medical News.

But Davis thinks its essential to do away with chronic fatigue syndrome. “My son is sick with it, and when I tell people, they say, ‘I had that once,’ because they were tired once,” he said. “ME is a better name, but there are no real data that fit the name.” Since that time, a lot of light has been shed on chronic fatigue syndrome. Doctors in 2014 linked CFS to inflammation of the nerve cells of the brain, and some now believe people with the syndrome are fatigued because something has gone wrong with their immune response.

"When you get the flu, when you get acutely sick, your body mounts a response against whatever is making you sick. That requires a significant amount of energy, and that energy is directed toward the immune response working directly and effectively," Vernon said. "Now imagine if the inflammatory response doesn't go away, and it continually requires the input of energy to maintain that response."

Some researchers believe the problem might lie in the hypothalamus, the part of the brain that regulates a wide range of different functions in the body.

"The illness represents an energy crisis on the cellular level. If you put too much demand on your body, the circuit breaker called the hypothalamus goes into a hibernation mode," Teitelbaum contends. "It takes people out of the game before they can do themselves harm."

SOURCES: News conference with: Ellen Wright Clayton, M.D., Craig-Weaver Professor of Pediatrics and professor, law, Vanderbilt University, Nashville, Tenn.; Institutes of Medicine, news release, Feb. 10, 2015; Suzanne Vernon, Ph.D., scientific director, Solve ME/CFS Initiative; Chris Fraker, Miami
Last Updated: Feb 10, 2015
 
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Tammie

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There should be a "WORSE than the status quot" response. Based on the many responses i have seen to the various news articles about this, people used to think that we were just tired, but now they think that we are lazy. Neither is good, but I'd rather be labeled tired than lazy, even though I am neither: this is WAY beyond tired, and I have a lot of other symptoms, as well.
 

Kati

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It is imperative that CFSAC recommends no further research on behavior, fatigue and coping, and the very overwhelming majority of the funding on biomedical research. The 2 consecutive days exercise test provides unique findings and gene expression also unique to the disease. However it is only one feature of the illness as I (and many others) know it.

That said I like the word acquired. It really sends the message that we weren't like that before and that something happened and what the heck is it? Scientists really like having good clues. It tells them where to look and what to research.
 
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ALS is also known as Lou Gerig's disease. Why not have 2 names like that. Maybe a decent compromise. SEID aka Ramsay's disease.
I think @beaker 's idea has merit. Why not have our own chosen casual name of Ramsay's Disease?

The medical community can debate over ME/SEID/CFS and possibly adopt SEID into their textbooks, etc. giving us all the official disease-recognition benefits that might entail, but I see no reason our patient community can't push for Ramsay's Disease as the nickname or an informal 2nd name that would be our Lou Gehrig's to ALS type name.

It might be impossible for the worldwide patient community to embrace, translate, or even recall the words that comprise SEID, but Ramsay's Disease is a name that is both rich in M.E. tradition and easily recalled by patients, their friends and families, the general public, and even the media.

I have tested the name Ramsay's Disease on several friends & family this week after the SEID name came out in the IOM report. Every one of them favored Ramsay's Disease over SEID, CFS, and even over M.E. (many have even taken the time to learn how to pronounce Myalgic Encephalomyelitis, but they still prefer Ramsay's).

When people ask what Ramsay's Disease is, we can tell them it's a disabling Systemic Disease named after Dr. Melvin Ramsay who was a pioneer in the field. If they have more questions, tell them the IOM just published a 235 page report on it, calling it a complex and serious disease. (my bet is they stop asking questions by this point). ;)
 

MeSci

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When people ask what Ramsay's Disease is, we can tell them it's a disabling Systemic Disease named after Dr. Melvin Ramsay who was a pioneer in the field. If they have more questions, tell them the IOM just published a 235 page report on it, calling it a complex and serious disease. (my bet is they stop asking questions by this point). ;)
I think that people I know would want to know how it affected people - what are the symptoms, maybe even the causes, so I will need to have some concise answers ready. I think we need to be careful what answers we give to such questions, as if we start out by saying that we get exhausted very easily people may just think we need to exercise and get fit...maybe we need to think up some succinct phrases that explain in lay terms that there is a deficit in energy production that means that physical or mental exertion can make us ill for days.

And maybe that very phrase is a start! :D
 
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I think that people I know would want to know how it affected people - what are the symptoms, maybe even the causes, so I will need to have some concise answers ready. I think we need to be careful what answers we give to such questions, as if we start out by saying that we get exhausted very easily people may just think we need to exercise and get fit...maybe we need to think up some succinct phrases that explain in lay terms that there is a deficit in energy production that means that physical or mental exertion can make us ill for days.

And maybe that very phrase is a start! :D
I agree it is good to be prepared with succinct answers. For their benefit and ours. Long conversations wipe us out and cause PEM.

I usually describe my condition as a neuroimmune disease that causes central pain and weakness 24/7, which is made much worse by sitting, standing, bright lights, or conversation.

But rather than focusing on symptoms, I usually tell about the major problems facing our affected patient population.

I might tell them it affects as many people as AIDS, MS, and Lung Cancer combined, but it gets funding in the bottom 10 of 240 diseases tracked by the NIH, about as much as Hay Fever.

And finally I tell them that after many decades, people with M.E. (now I am substituting with Ramsay's Disease) are still waiting for our first FDA-approved treatment. That hopefully a new report by the IOM will prompt doctors to take our disease seriously and that they came up with their own new terminology SEID (Systemic Exertion Intolerance Disease), but patients can remember Ramsay's Disease more easily.

How'd I do? Besides not being brief.:whistle:
 

caledonia

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  1. It should be descriptive. People should be able to tell immediately, just from the name, what the basics of the disease are. If this requirement is not met, you get dialogs like the following: "Ramsay's Disease? What's that?" "It's what used to be known as Chronic Fatigue Syndrome." "Oh, right! Psychiatry is down the hall and to the left."
The problem with this is not the name Ramsay, but the "elevator speech" that goes along with it. What is Ramsay's Disease - "a neurological disease similar to MS."

I've used this before. You relate it to something that's already familiar that they can relate to. People get it right away.
 
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It should be descriptive. People should be able to tell immediately, just from the name, what the basics of the disease are. If this requirement is not met, you get dialogs like the following: "Ramsay's Disease? What's that?" "It's what used to be known as Chronic Fatigue Syndrome." "Oh, right! Psychiatry is down the hall and to the left."
Until the etiology is further understood, I suggest, on the contrary that it should be less descriptive and this is an advantage, rather than a disadvantage.
 

caledonia

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ALS is also known as Lou Gerig's disease. Why not have 2 names like that. Maybe a decent compromise. SEID aka Ramsey's disease. But then, everyone knew lou gerig. Only our community knows Ramsey.
nevermind.
Perhaps it might prompt some people to wonder just who Ramsay was, and actually look it up. But I think just knowing that he was the guy who discovered the disease is enough. How many people know who Alzheimer and Parkinson were?

The problem is that the name at this point is really a marketing issue, not a scientific one. The IOM should have used the marketing guy they hired to help them with the name.
 

MeSci

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Perhaps it might prompt some people to wonder just who Ramsay was, and actually look it up. But I think just knowing that he was the guy who discovered the disease is enough. How many people know who Alzheimer and Parkinson were?

The problem is that the name at this point is really a marketing issue, not a scientific one. The IOM should have used the marketing guy they hired to help them with the name.
It could be very beneficial if people looked up Ramsay's papers. People don't feel the need to know about Alzheimer and Parkinson now because they know what the illnesses themselves are. Maybe in time the same will be the case for ME/SEID/Ramsay's disease.
 

Dolphin

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I'm growing to like Systemic Exertion Intolerance Disease the more I reflect on it. It was exerting myself which caused me to go from being mildly affected (which I was for the first few years of the illness e.g. full-time education at a high level) to becoming severely ill & chronically affected for the last 20.5 years. Having "Systemic Exertion Intolerance Disease" is a good way to explain this phenomenon it seems to me (I don't think we have a good handle on why this happens i.e. I'm not sure any technical name would necessarily explain it).
 

Dolphin

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I'm less concerned by attitudes of the public than by how a name affects the medical and scientific fields. The public tends to take their views from what the medical profession think.

As I've mentioned, "chronic fatigue syndrome" allows for weak criteria like the Oxford criteria, empiric criteria and even the Fukuda criteria. None of these require post-exertional symptoms. These have led to all sorts of problematic research.

"Systemic Exertion Intolerance Disease" ensures that post-exertional symptoms have to be part of the criteria.
 
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SOC

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We're wasting our time and energy pushing for an eponymous name we are simply not going to get. They don't do it anymore. Period. It doesn't matter if that's right or wrong; it's the way it is. We have MUCH more important things to discuss with HHS than whether the rule about eponymous names is sound or not.

If we want to make our own unofficial eponymous name and hope it catches on enough to get listed as a synonym (like Lou Gehrig's Disease), fine. If we can get enough grassroots use of the informal name, it might work. But we are not going to get HHS/NIH or WHO to change their rule about official names just for us. Heck, we can't even get them to admit it's a serious illness; why would they be at all inclined to change one of their basic, universal rules just for us? It ain't gonna happen, folks.

I'm not all that crazy about SEID (although Systemic EID is growing on me), but I'm not about to cut off my nose to spite my face simply because it's not exactly the name I would have chosen. It is better than CFS, if only marginally so. It's got the astonishingly good IOM report behind it, which is no small thing.

Let's pick our battles and put our limited energy behind some fights we have a hope of winning, such as significantly increased research funding based on the IOM report.
 
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Is hard to pronounce, and what is the translation to other languages. If I tell my mom in my native language it does not even make any sense. Sigh.
: D
in Italian could become:
Systemic Disease Intolerance Exertion, translate:
Malattia Intolleranza Sistemica Sforzo...
that is: Miss!
in Italy there is a forum: CFSItalia, would become... Miss Italia?!
would surely have more readers ;)