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

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SEID backwards is DIES.
Oh I really dont like that as I believe in subconscious programming, its a "subliminal message". So in my view everytime we are looking at that word, that's being said to our subconsciousness.

(sneaky way to get rid of ME/CFS patients.. new way of subconscious programming, give a patient group a name they will see over and over to try to get that idea into their brains ie suicide).

Ive worked very hard on my subconscious thoughts in the past and clearing negative stuff so this name goes against everything I believe.
 

Sean

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This. Changing the name and diagnostic criteria essentially invalidates all present research on ME/CFS.
I don't think that is a reasonable view. We are not starting from a blank slate. The existing research will still inform future work, just with more appropriate caveats on it, and the new criteria are not a radical change.
 

taniaaust1

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It is significant that patients here are already referring to ME/SEID. Not a complete picture, just saying SEID.
Umm I like the idea of using the new term and ME separately so putting it as ME/(and then new term) as yet we dont even know what the diagnostic criteria has been put onto the new term.

I wont be happy with the diagnostic criteria (I hope they including some ME test abnormalities in it then I would be happy) unless it sounds like ME criteria.

I dont like thou that new term is DIES backwards.. could we as a community change one of the words in the new name so it doesnt have die in it when its shortened? any ideas? If we arent going to like it for that reason, we need to come together and make it clear we arent going to accept it as is and possibly change it ourselves.

I myself dont want to be calling the non ME ones "chronic fatigue syndrome" as its so degrading. I want to be able to call that group something else.
 
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Undecided.

I feel a whole new raft of jokes coming on at our expense. I've worked on many manual labouring sites where anyone slacking off is said to have 'blown a heart muscle' or has 'piss weak disease'. Now, 'he's got exertion intolerance' will get into the lexicon. If it gets noticed at all by the man on the street.

I fear they will drop the use of 'systemic' and 'disease' in everyday parlance and trivialize it again.
That can't be helped I suppose. I've forgotten the whole term about four times already.

It's more pressing for me to get doctors to take the illness seriously. Maybe a bit of rebranding can do that ?
It's worked for many companies. 25 odd years of CFS branding hasn't moved us forward. No-one can sell it.

Once again the name doesn't do justice to the very severe cases of ME. But then, what words would suffice to convey that level of suffering to the public?

All in all I would rather risk a change than keep the name as it is. Any press is good press.
 

taniaaust1

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I think it is going to cause more confusion, but more questions as well. People are not going to research the history or the disorder. They will take the sound byte moment and run with it. It is significant that patients here are already referring to ME/SEID. Not a complete picture, just saying SEID. There are rumblings that the word brings up interesting :eek: things when Googled.
is it this they are refering too? Firstly we know CFS has been refered to as being a womans disease.. seid (a quote from wiki below)..

"In the Viking Age, the practice of seid by men had connotations of unmanliness or effeminacy, known as ergi, as its manipulative aspects ran counter to masculine ideal of forthright, open behavior "

its interesting that word Seid can refer to effeminacy in men.

Im sure they didnt name the disease on anything on that but it sure is interesting to read that about the word esp since CFS has been basically known as a "womans disease".

Actually Im not so sure, it makes me wonder if there is someone, having their sick little joke about it all and this word connection may get known with time and will be something some people will make jokes about. We all know how badly this illness is sometimes made fun of by some people.

How does the guys here feel about the connection with the Seid word with "effeminacy in men"?
 
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Sing

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To me the PROPOSED name is not the most important aspect of today's report - mostly I think the proposed name is confusing. More importantly, I doubt anyone knows the full impact of changing the diagnostic criteria. We now have exactly ZERO validation (or any other type of) studies of S.E.I.D. If the new criteria unintentionally pulls in patients with primary depression (or other illnesses that aren't ME), then the ease of four simple symptoms (half as many as eight) would come at great cost to us.

And all of this for a cool $1 million! As long as we're not going to spend that on research, we probably could have gotten a much bigger bang by simply hiring a PR firm (and by PR firm, I'm not talking about the CDC).
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.
 

Sherlock

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SEID is not perfect. It muddles things. But maybe out of the muddle the important changes will come.
A probable problem: if the name is changed now for some intermediate betterment, that would make it highly unlikely that another name change would take place anytime soon - else it would look like Moe, Larry and Curly were in charge, making constant name changes.
Thank you (said sarcatistically) to those who didnt consider the name length and the writing issues of those who have severe ME/CFS.
I'd thought that it was kind of arrogant to (apparently) not have consulted any patients to review their recommendation. Your very practical point is something that they probably would have never thought of, from their lofty perches.


Besides all that, I'll mention that I watched a US network nightly news report on this today and even though they very deliberately started off by saying that it's not just about being tired from doing too much, they then botched it by focusing on a harried working mother of three - thereby making it seem that after all it was all about being tired from doing too much. :bang-head:
 

SDSue

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Anybody recognize this fellow:


iu-2.jpeg


In 1993, Prince changed his stage name to the "Love Symbol" (a combination of the symbols for male (♂) and female (♀). Because the symbol had no stated pronunciation, to this day he is known as "The Artist Formerly Known as Prince".

……… just as we risk being forever known as "The Disease Formerly Known as CFS" regardless of the new name chosen, especially if than new name has no easy pronunciation and is not based on biomarkers.
 

taniaaust1

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All research on ME and CFS is in question anyway, there have always been cohort questions. I predict this name wont last, and I am not fully sure it will be adopted. In any case it will become tainted by dissenting psych opinion in particular, within years.

What this does have is that while there are no diagnostic tests, there are tests for most of the key diagnostic features. They do not have to be subjective.
I agree completely with alex. Unless the new definition includes some ME testable abnormalities in it for diagnoses, the name will soon be tainted by psych opinions.

Im not holding out any hope that they have included some testable ME abnormalities in the new definition.

There is no reason why even at this point they couldnt have done that as its done in so many other illnesses eg you need 2 of these testable abnormalities out of this group listed 6-8 listed or whatever. So why isnt it done yet in ME, they know lots of abnormalities appear in this illness (I have several at least of the well known testable ME abnormalities).

eg Nearly all of us have provable OI testable abnormalities for a start. Its crap they arent using testing things and using it to aid in our diagnoses.

Fingers crossed that the new definition will surprise me but I doubt it.
 

taniaaust1

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yet another way what we do with the name could get ridicule.

I can imagine a group of psychs discussing and making fun of their ME/CFS patients who want them to use the ME/SEID term as the ME people wont want to be lumped with non ME (SEID)..

"ME/SEID Im lazy, ME/SEID I dont want to go to work, ME/SEID Im going to not want to get well". They could throw the comments back and forth putting their own words to ME/SEID.

(im still far more worried about the subliminal DIES thing thou which would be put onto us).

We could almost write a top 10 list of the reasons why people dont like this new name.
 
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It's still just describing a symptom. I prefer a name that uses medical language, or that points to causality (although I know that's pretty hard to do at this point in our research. But it sounds really vague, and unprofessional... pretty much like "We Don't Know WTF is Wrong Disease." Maybe we should call it WDKWTFIWD? :)

I agree with some others that is sounds incomplete. I'll take it over CFS any day, but why go to all the trouble changing a name when the entire world except the US has known it as M.E. since 1950, and as we progress in research we'll just have to change it again when we actually know the cause?

This is still covering waaaay too many illnesses at once, it's not really narrowing anything down since it's still about symptoms. We're still likely covering people with hormonal imbalance, people with mercury poisoning, people with gut yeast, people with immune dysfunction, etc. etc. all in one group of separate causes with overlapping symptoms.

Can anyone explain to me WHY this does not include a requirement for low NK-cell activity/count? Is that not a pretty consistent and unusual biomarker? And is there a required test and a set measurement for Post-Exertional Malaise, or just the usual self-reporting BS that gets us nowhere but a whole lot of skeptical doctors crying "Hypochondriac!" ? It's a total waste of time to have a new set of criteria and a new name, and put all the money into changing the names of organizations and their respective forms and letterhead stationary, just for something totally vague and no more measurably scientific than the last definition and name.

I'm most in favor of the fact that they're TRYING to change the name - to me, that is the best news we've had as a patient community in decades! Enough people across agencies felt that this disease was important enough, severe enough, and costly enough to our nation to try to be thoughtful about its name and the impact of such on patients! But if you're changing the name for the patients' benefit, it would seem obvious that you should conduct extensive poll voting in the patient communities first; and if you're doing it for the doctors, it would seem obvious that you should use a name doctors are more likely to take seriously and respond to, in more precise medical language. And NOT just describing symptomology!

I like the Disease part, but I don't like the "Intolerance" part, because that is SUCH a big spectrum, and to me does not indicate that this is very serious. Many people have "intolerance" to things, and while Systemic is good, an "intolerance" might simply mean you feel a little off, and not that something is making you treacherously sick and in danger of dying due to secondary cause such as cancer growth because your cells are not fighting it as they should, or death by inflammation in the brain stem, or eventual heart attack because of such strain on a totally inefficient heart function. "Exertional" is ok, because that does at least allow for the possible understanding that both physical and cognitive (as well as visual and even auditory) exertion are triggers. At least I would say that "Exertional Intolerance" may really help with Disability cases, whether federal or for temporary leaves from workplaces.

So without having taken eons to think about it, I will suggest:

Autonomic Collapse Disease (ACD - given that Autonomic Dysfunction- or Disregulation- Disease, or ADD already being taken by Attention Deficit)

Systemic Autonomic and NK Disregulation(Dysfunction?) Disease (SANKDD) - sort of, but not thrilled with SANK in the name feeling less than optimistic!

Natural Killer Cell Deficit Disease (NKCDD)

Total Systemic Failure Disease (TSFD) - LOL, this one wouldn't really pass medical muster

ImmuneNeuroCardioAutonomicGastroEndocrine Disease (INCAGED)? - let's just try to name every single system that's messed up in the disease?...lol - at least I like the name CAGED in the title, because that is what our lives are like

Really, if this name is supposed to be only for the US, I really recommend getting behind M.E. (-opathy) just for uniformity with the rest of the world as should have been the case all along. It doesn't make sense for different industrialized English-speaking countries to use wildly different names for the same disease in a globalized medical community, just like it makes no sense for us to be the only ones not to use the metric system. We are just creating more problems for patients, doctors, and research, especially in an increasingly globalized world.

Aside from further alienating us from the rest of the international medical community, I do think that the current name is an improvement but is missing some key biomarkers (even if they are still vague). I mean, doesn't everyone in a set of severely ill patients pretty much have Natural Killer Cell abnormalities, as well as autonomic dysfunction, as well as the P-E Malaise (a term I also detest because "Malaise" is as bad as "Fatigue." Isn't it time we define a group of patients for whom immune, neurological, gastrointestinal, endocrine, and autonomic dysfunction ALL SIMULTANEOUSLY are the norm?

[LOL to the post that SEIDS backwards is DIES! It's not funny, but thanks to that poster, because that was the biggest laugh I've had in such a long time. If we don't keep our sense of humor in this, we've got nothing. I find it ironic, and I will probably laugh every time I have to write the acronym if they keep this name. I could use the extra chuckles during my many pointless trips to the doctors', who all collectively have absolutely no clue what to do with us, but gladly take the money anyway.

How about
Arrogant and Dismissive Doctor Syndrome?(ADDS) - that is certainly a set of symptoms the majority of patients share suffering through, right?)] :)
Best wishes to you all, and keep your sense of humor in this rollercoaster!
 
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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. :)
 

taniaaust1

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Is it even possible to get the IOM to change the name at this point? Would this even have a chance of success?
If the name is outrightly not accepted world wide by both doctors and patients and its obvious it wont be, I cant see how they can change to it.

Better could be done then this, they should of consulted with our specialists and patient groups or got our societies to run name polls of selected names rather then dumping a name like that onto us without consultation.

I originally thought about accepting the name as it is better then CFS.. but changed my mind as there is lots of issues around it and if we agree to change to this, we may not get a more suitable name given for a very very long time.

The CFS name will go I think as good studies are starting to be done (we are fundraising and now helping get the studies we need done)..and Im sure hopefully soon (within next 5 years?) more will be known about our disease.

So the question is.. do we want second best for maybe the next 20 years or do we want to get a good name? or have the ME name offically recognised?

I think as a group we now are more in control of things and arent such a group of victims now. If govs wont fund our research we will!
 
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I hope we all take a moment in our hearts to at least appreciate that a name change has been officially proposed. That alone is a sign of respect for patients, and for the disease, even if the name selected may be lacking.

Truthfully, I would not have had as much problem with the original name, were the word "Fatigued" have been replaced with "Exhaustion."

Chronic Painful Exhaustion Disease (CPED) would have been way better than CFS

It's clearly not enough, though, especially if now we're going to take the trouble to change it. But if that had been the original name, it would at least have been a better scenario, and not been confused with common levels of fatigue, as well as those with Depression, or many cancers.

And this reminds me that another omission in the name (and in the criteria?) is the existence of constant moderate-to-severe pain, which I think is also rather a hallmark for the majority of patients, is it not?

How about Multiple Disease Disease (MDD) :) , with a criteria that you must have ALL of the following

1. Low NK Cell count/activity
2. measurable Autonomic Dysfunction, including some type of measured Orthostatic hypotension, intolerance, POTS, or arrhythmia
3. measurable Post-Exertional Malaise
4. Unrefreshing sleep and measureable sleep disorder/repeated sleep disturbance
5. Chronic electrolyte imbalance and/or Low blood volume (is blood volume measurable)?

AND at least 3 of the following 7:
1. Fibromyalgia
2. IBS
3. Severe Cognitive Dysfunction
4. active HHV-6
5. re-activated EBV
6. co-morbid viral activation such as Parvo, CMV, Cocksackie, etc.
7. Endocrine dysfunction including measurable and chronic vitamin absorption difficulties/malnutrition such as significant Vit. D deficiency, B-vitamin deficiency, etc.
8. Backwards cortisol level measurements

Maybe we could call it:
I Can't Believe One Person Could Have So Many Things Wrong and Still Live! Disease (ICBOPCHSMTWSLD)

Does anyone know the specific immune biomakers that seem significant at this time, outside of NK cells? It's something like CD3+CD4 and CD8 something something, but I don't know enough about Immunology to know. I just know that we have consistent white blood cell dysfunction, with some combinations being consistently too low, and some consistently too high (indicating possible autoimmune involvement)...

White Blood Cell and Autonomic Dysfunction Disease (WBCADD)...?
 

Esther12

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Oh I really dont like that as I believe in subconscious programming, its a "subliminal message". So in my view everytime we are looking at that word, that's being said to our subconsciousness.

(sneaky way to get rid of ME/CFS patients.. new way of subconscious programming, give a patient group a name they will see over and over to try to get that idea into their brains ie suicide).

Ive worked very hard on my subconscious thoughts in the past and clearing negative stuff so this name goes against everything I believe.
Not sure if serious.


At this point, I think that we'd be better off with some Latin squiggle or a random name. A part of me would quite enjoy Wessely's Disease.