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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 .
Messages
15,786
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?
Exercise Intolerance is a well established biological reaction to exertion, present in many illnesses. The only people who are going to make jokes about "intolerance" are the trolls who already mock everyone to boost their own egos.
 
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adreno

PR activist
Messages
4,841
Orthostatic intolerance is another well established medical condition. It is not dependent on subjective feeling.

A name can't encompass all the symptoms of ME/CFS, but if there is one cardinal symptom it would be PEM.
 
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Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Can another option be added to:

Better than the status quo, but I'm unsure at this time whether I would endorse it myself.
Sorry I missed this yesterday, but have now added this as an option
nb YOU CAN CHANGE YOUR VOTE IF YOU WISH


====================================================

EDIT: Cort has a poll too, with a wider range of questions, if you want to vote there too (here, scroll to end of article). Questions below

A New Name for MECFS
  • Rate Systemic Exertion Intolerance Disease on its ability to capture the core features of this disorder
    • Very accurate
    • Somewhat accurate
    • Not very accurate
  • Cringing Factor - Chronic Fatigue Syndrome had a high cringe factor that made you not want to say it. Is there a cringe factor for SEID; if so what is it?
    • High
    • Moderate
    • Low
  • How much do you think this new name would help doctors understand your illness better?
    • Very much
    • Moderately
    • Somewhat
    • Not much
  • Overall what do you think of having this name replace ME/CFS?
    • Good idea
    • Not a good idea
    • Not sure
 
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heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)

adreno

PR activist
Messages
4,841
I think names like neuroimmune disease were ruled out because they are too unspecific. Tons of diseases involve the nervous and immune systems.

They have tried to come up with a name that uniquely describes the condition. Not that I think a new name is going to change much though, when there are still no objective biomarkers.
 

Sean

Senior Member
Messages
7,378
If we really want to sell the brand, how about SEXID ? (Systemic EXertion Intolerance Disease)

Or just SEXI ?

Along similar, though more family friendly and serious lines:

Systemic Exertion Intolerance Disease

SEIND (signed or sayned)
SETID (set-id or say-tid)
STEID (staid or steed or styed)
SYTEID (sigh-taid or sigh-teed or sigh-tyed)

I can live with the basic words they used and the meaning (I believe) they intend. But the acronym SEID sucks. It has to be easy to remember and pronounce. We have earned that much at least.

FWIW, my preference would be for SEIND.
 
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heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I think names like neuroimmune disease were ruled out because they are too unspecific. Tons of diseases involve the nervous and immune systems.

They have tried to come up with a name that uniquely describes the condition. Not that I think a new name is going to change much though, when there are still no objective biomarkers.

Doesnt make sense?? SEID i think is alot more non specific than neuro-immune?
 

Ecoclimber

Senior Member
Messages
1,011
Too much focus on the name, that name change will come later. The most critical change, the most poignant point is stating that it is a biomedical disease. This fact alone undermines the entire hypothesis, theory on ME/CFS as a 'false sickness belief', a psychogenic, psychosomatic somatization by Wessely and his ivory tower cohorts. It puts him on the defensive as it undermines the PaceTrail without any replication and CBT and GET for treatment modalities which reseearch has proven only makes the condition worse. It makes him appear as a Quack especially with his 'fear avoidance' thypothesis. They receive funding from the NIH so they must play by the NIH rules. Wessely will be on the defensive. Wait for his barrage of information coming out from the SMC.

The best attack is to ridicule his statements to show the public how outlandish they are. Mocking is a very effective tool to change entrenched public perceptions. Wessely uses effectively with this patient population.
 
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Messages
35
I think it would have been better to use the money on research.

I long for the day when someone decides to check say, about 500, patients some who meet the most stringent criteria and some who meet only the more lax ones and then run every test that has ever shown any evidence of biomedical abnormality in any small trial.

That way we would know a great deal.

That way the criteria could be analysed and graded along with the other findings and at the end we would be able to sub-group and assign relevant nomenclature on the basis of the scientific findings.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I think it would have been better to use the money on research.

I long for the day when someone decides to check say, about 500, patients some who meet the most stringent criteria and some who meet only the more lax ones and then run every test that has ever shown any evidence of biomedical abnormality in any small trial.

That way we would know a great deal.

That way the criteria could be analysed and graded along with the other findings and at the end we would be able to sub-group and assign relevant nomenclature on the basis of the scientific findings.

Thats basically what Dr Lipkin is trying to do but raising funds to do so is the biggest stumbling block.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
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.

I don't think that's implied at all. I think it (accurately) indicates that we have an abnormal, disease-driven intolerance to exertion as a key symptom. It's impossible to be considered a healthy person when you've got that. No-one thinks that someone with a broken leg is fine as long as they don't walk on it.
 

aimossy

Senior Member
Messages
1,106
I am actually concerned that it's a bit embarrassing this new name, although can see it's come from a very well meaning place. I'm really torn about how to feel about it all. I think doctors won't think any more of it than ME/CFS and its a bit contradictory in itself in how it reads and could cause more confusion. I think it would have been great if they recommended a name review in a couple of years when we are likely to have a bit more research.

The concrete stuff they have is that there is immune dysfunction but they have focused on exertion only in the name. It's seems weak and weird. Exertion intolerance wording means people will focus on that instead of systemic and disease. The explanation how they relate is complex so I think there is a problem there. The average person with no knowledge of the illness will think how can you have an intolerance if its a disease. You just stop doing what's causing the problem - like lactose intolerance. Doctors will have the same attitude to this that they have to ME/CFS and roll eyes.

I think they have missed the mark in realising what we don't like about our current name and given us something that is very similar but more confusing.

It could be possible that because the new name gets focused on with this rollout the actual things that are good in the report will have less highlighting in the media. But then again I'm so torn with all this because its encouraging debate and highlighting the illness and if that means Health Professionals getting more educated following this IOM - if that happens that could be really great.

Part of me thinks this could open us up to more ridicule until we have more concrete information. But they have said that this name could be obsolete in a couple of years anyway.

@Simon is it possible to have a poll option for keeping status quo and recommend name change review possibility in 2 years?
 
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SOC

Senior Member
Messages
7,849
@SOC it would be interesting to see if your nk bright cells show abnormalities? More refined nk function test?
It would be interesting indeed. I hope we all can get more refined NK cell function testing soon. That might clear up a lot of confusion and give us the biomarker we need.
 

Seven7

Seven
Messages
3,444
Location
USA
We are so desperate to take whatever is best, Here is my question to yourself in 20 years. To the people that accepted CFS for us and we are here where we are today.

In 20 years those people new to SEID will the name make justice, does it make any sense or sounds as ridiculous as CFS does sound to us today. Are we so desperate that we will make a deservice to the comunity for years to come.

That should be the question.
1) Does the name trivialize or cannot be subjected to trivialization.
2) Once the back up video dies and all is left is SIED, can people (Psys and comedians) take advantage and make a 360 from where we are today.
3) Is the current CFS OI provable? How can we prove it if most do not have classical POTs. Which test are they proposing to use.
4)PEM are they requiring prove? how will we prove, test this.????

I just want to make sure we ask the right questions now and not in 20years where it is as late and pitiful as it is for us today.
 

Sing

Senior Member
Messages
1,782
Location
New England
About the pronunciation of SEID, I recall that the letter "I" can be interchanged with the letter "Y", so that makes it sound this way: SEYD (pronounced SAYED).

Now I am also remembering how I was once a champion speller in Grades 1, 2, 3, until the day I was asked to spell "say" and I completely blocked. I was so embarrassed because it was such a simple word but my mind drew a complete blank. This was the only time in my spelling bee career that I ever did draw such a blank. Maybe this was some kind of psychiatric (word association) precursor to the fact that I would be getting a shocking, life limiting illness that would later bear, essentially, that name?
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
If the international medical community now wants to put a thick red line through the name ME/myalgic encephalomyelitis (due to the probable pathological inaccuracy of the E in ME) I would suggest that we could have another go at promoting the term ME/myalgic encephalopathy - which is consistent with the structural and functional neurological abnormalities that have been reported in the medical literature and cannot be seriosuly challenged.

or encephalitis?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Re
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.

When something is backwards I regard it as meaning the opposite. So by my logic SEID means 'lives'.:)
 
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