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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 .

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
:) Yep, not sure they completely thought that through.

Seriously, I do like that they've got "Systemic" in there. And I like that it actually gets to be a "Disease", which might reset a few perceptions. Bit in the middle needs work, though.

I'd be happier with MSD (Multi Systemic Disease) thou the name is still long to write with a weak shakey hand. At least that would be a name they wouldnt have to change in future and it sounds serious enough and would be easy enough for us to remember.
 

SOC

Senior Member
Messages
7,849
How about Multiple Disease Disease (MDD) :) ,
:eek: Argh! No! MDD = Major Depressive Disorder. Not a confusion we want. :)

...with a criteria that you must have ALL of the following

1. Low NK Cell count/activity
I hope not. I don't have either, although my daughter who had the same initiating illness and the same (although less severe) symptoms has had both over the course of the illness.

Some of us have low CD8+ cell numbers instead. I believe this is documented by the... urgh.. the name escapes me... the Australian immunology team.... you know who I mean.... :rolleyes: I'm pretty sure NK cell dysfunction is not universal in ME/CFS, but some limited list of immune dysfunctions probably is.

we could call it:
I Can't Believe One Person Could Have So Many Things Wrong and Still Live! Disease (ICBOPCHSMTWSLD)
I could get behind that. :D We could shorten the acronym to ICBOP in our friendly little way. I like the sound of that -- a hip, with-it kinda name. "Yeah man, I came down with, like, ICBOP." "OMG, like, for real?"

If we're going to have a place-holder name anyway, it might at least be fun to say. :p
 

CBS

Senior Member
Messages
1,522
When you say PROPOSED, now I gather that someone else will decide whether or not to accept this new name. Who would that be?

I also think you and Dr. Enlander, I noticed, raise a very important point about distinguishing our group from those with Depression in particular, as there are so many of them and their numbers have seriously messed up the research seeking answers to our illness. This is a point we may need to speak loudly and clearly about.

I was implying that I doubt there was any kind of binding agreement with HHS that all facets of the IOM report would be implemented. Think about the IOM and Gulf War Syndrome. The IOM dubbed GWS, "chronic multisymptom illness." Apparently the VA uses this term but everyone still recognizes the term GWS.

To me the diagnostic criteria are the most worrisome.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It will probably end up seid/cfs/me? ??

I think other than ME, CFIDS probably explains it better as it's mentioning the immune dysfunction???

Good point with CFIDS (chronic fatigue immunity dysfuntion syndrome). Nothing at all wrong with that abbrev.

I dont think most of us had an issue with fatigue being mixed the immunity dysfunction in that case. This name is still used and is known.

I guess thou in some abnormalities in immune system cant be found so that poses an issue once again on symptom grounds. I would far prefer that name then this new one.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I'm with the Dolphin. It isn't enought that it is better than CFS as any half-hearted attempt would be, so the question in my head is, Is it better enough? I don't know yet, and that just highlights for me that it isn't hughely better else it would be much easier to answer...does that make it a fail then?

snowathete I think anything which is only "slightly" better then CFS which we all know is truely terrible, cant be all that good.

I understand some may be tempted to jump at not so good or even bad name just cause CFS is so horrid. The fact that so many of us are questioning it over keeping CFS, is saying something.
 
Messages
14
Autonomic Dysfunction NeuroImmune Disease (ADNID)

Autonomic Immune Multi-Systemic Dysfunction Disease (AIMSDD)

Chronic Autonomic Immune Dysfunction Disease (CAIDD)?

I sooo wish they had asked the community to brainstorm and take polls first, if they were going to use such a vague and unscientific name anyway. SEID is a good start, but we probably could have come up with better if we all put our heads together...

I should have gone to sleep hours ago, but this is such a big deal, how am I going to finally fall asleep and feel even slightly better than terrible tomorrow? Having this disease is too much drama...

Chronic Medical Catastrophe Disease? (CMCD)

Debilitating Autonomic NeuroImmune Disease (DANID)


Or the best word for it in my experience of today would be,
Extremely Expensive Multiple Doctors Not Covered By Insurance Disease (EEMDNCBID)! :)
 
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Nielk

Senior Member
Messages
6,970
Should we be accepting crumbs? After 30 years of a pathetic name, are we to accept another pathetic name?

It might be true that the elements of SEID are accurate, in a while it is still a demeaning name.

The actions of the IOM do not match with their statements.

They state that this is a very serious real disease yet they produce this demeaning name.

They gave us a crumb by giving us "disease" in lieu of "syndrome"but, the connotation of the name is that we only have. A problem when we exert ourselves. If we stay within our envelopes, we would be perfectly healthy.

That is very far from the truth. We feel sick, pain, weak, dizzy, sensitive to environment, headache etc. Even when we are resting.
 
Messages
14
OK, I think I have one we can all get behind:

*Very Serious Disease (VSD)*

I personally would vote for that TODAY, if it was offered as an option. Screw trying to pin it to a cause or biomarker since there is so much more research to be done. It would never have to be changed even when we do discover a definitive cause(s). The main point we all agree on is that it is serious, and we want doctors, the govt, funding initiatives, Disability offices, and the public to take it seriously.

Anyone second that? :)

I think any boss, family member, community member, doctor, or friend of mine would be appropriately concerned if I told them I was diagnosed with Very Serious Disease. And yet, the name does not discount hope, nor say that the patient is necessarily going to die imminently. But it's certainly not to be ignored, nor confused with what many other people have in their daily lives as physically rather healthy people. And boy, would it be good PR, and something tons of people would be willing to participate in a fundraising run for, or write a grant for!
 

Ecoclimber

Senior Member
Messages
1,011
Here are some of the comments taking from various articles to consider: Take a moment and reflect how it counters totally Wessely arguments on ME/CFS!

1. Sharp reduction in the ability to engage in pre-illness activity levels that lasts for more than six months and is accompanied by deep fatigue that only recently developed.
2. Worsening of symptoms after any type of exertion, including "physical, cognitive or emotional stress."
3. Sleep that doesn't refresh the sufferer.

In addition, the committee said, true chronic fatigue syndrome also includes either cognitive impairment or the inability to remain upright with symptoms that improve when the person with the condition lies down, known as "orthostatic intolerance." Further symptoms severe headaches, muscle pain and sensitivity to light and noise.

That it cost the economy up $24 billion. This is more than the P2P panel stated

The authors of the new report agreed that the term chronic fatigue syndrome “has done a disservice to many patients,” but said that myalgic encephalomyelitis “does not accurately describe the major features of the disease.”

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.

"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.

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.

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.

"We just needed to put to rest, once and for all, the idea that this is just psychosomatic or that people were making this up, or that they were just lazy," Ellen Wright Clayton of Vanderbilt University. Dr. Clayton specifically stated that this is not a somataform disorder but a real biomedical disease!

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.

"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.

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
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
If we're going to stick with naming it for symptoms, how about:

I Feel Terrible Disease (IFTD)

or

Never-Ending Flu Disease (NEFD)?

On some days, I might also favor

Leave Me the F Alone Until You've Found a Cure, I'm Too Sick for this Endless BS Disease (LMTFAUYFACITSFTEBSD)... :)

or better yet

Really Sick Disease (RSD) - simple, and to the point. :)

Forgive my asterisks, but what about Totally F***ed Disease, or TFD?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The biggest issue I have with this is that the name once again is being pushed on us without any involvement as to how the name was derived.
Yes, as was the entire P2P fiasco, the IOM from the beginning. Things would be much better if we were properly included from the start. If they had followed the CFSAC recommendation. If they had not done so much of the work leading to the whole process out of sight.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I hope not. I don't have either, although my daughter who had the same initiating illness and the same (although less severe) symptoms has had both over the course of the illness.

Some of us have low CD8+ cell numbers instead. I believe this is documented by the... urgh.. the name escapes me... the Australian immunology team.... you know who I mean.... :rolleyes: I'm pretty sure NK cell dysfunction is not universal in ME/CFS, but some limited list of immune dysfunctions probably is.
I do think of you SOC when nk function is mentioned as i know your nk function is normal. I think its an important biomarker but a diagnosis shouldnt come off 1 biomarker as im sure there will be many with cfs/me with slightly different abnormalities. Like you mention they have found cd8 t cell function is also low many cfsers, theres another viral biomarker that KDM use to mention alot and also cytokine tests. I think maybe if one fits the CCC and has a predetermined number of immune biomarkers, not just nk function but others show immune dysregulation, than they get a diagnosis of cfs/me.

@SOC it would be interesting to see if your nk bright cells show abnormalities? More refined nk function test?
 

Ecoclimber

Senior Member
Messages
1,011
Good Grief, It will get us pass the psychobabblers. It just a stepping stone...just a stepping stone. Now, take a deep cleansing breath.:) It is not, I repeat not,Set in stone. They will revisit the name in five years after more research has been conducted to conclusively understand the cause of this disease. CMI for the Gult War Vets didn't get them out from under the psychobabblers and their treatment option. Would everyone prefer that name? We were afraid of getting that label. It was because of our advocacy work and action with our patient advocates that made the difference.

Leonard Jason, a psychologist at DePaul University in Chicago, expects that patient advocacy groups will find fault with the new name, feeling that they were not adequately consulted. “As a community psychiatrist who values citizen participation in critical decisions, I think this was a strategic mistake,” he says.

In contrast, members of the IOM panel say that the new name could help patients suffering from the disease, whose existence has long been doubted and even mocked. “If I never hear another person say ’I'm chronically fatigued too,’ it won't be too soon,” says committee chair Ellen Wright Clayton, an expert on law and genetics at Vanderbilt
University in Nashville, Tennessee.
 
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Gingergrrl

Senior Member
Messages
16,171
I think the word that we are all reacting to is "intolerance" b/c it completely minimizes the severity of the disease. They need to replace it with another word but I am not sure what?

There are many things that I despise but I can "tolerate" them if I have to whereas when my autonomic system is not regulating itself properly, this is beyond my control and has nothing to do with the concept of tolerance!