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

[Kati]

The answer I came up with is "Enervating". According to Merriam-Webster's Medical dictionary, to enervate is "to lessen the vitality or strength of". That sounds right. There are no psychiatric or psychological meanings listed, and I've never seen any psychiatric or psychological usage of this word in medicine.

Enervating, translated in french means to annoy. Imagine that!

 

[nandixon]

Here's a new one, I think:

Multisystemic Exertional Neuroimmune Disease (MEND)

 

[zzz]

@zzz Does everyone with ME/CFS have endocrine issues or would it only pertain to one of the sub-groups?

Considering that the endocrine system contains the hypothalamus, the pituitary gland, and the adrenals (i.e., the entire HPA axis), along with other glands, I think that one could safely say that it includes everyone with ME/CFS. The authors of the "NEIDS" name apparently thought so too.

Enervating, translated in french means to annoy. Imagine that!

More specifically, the present participle énervant means annoying or nerve-wracking. However, the main transitive verb énerver translates directly as "to enervate". As the different word ordering of French means that the acronym is likely to be different anyway, I would think that something could be done with énerver or one of its tenses to make this work.

ETA: Although the translation "Acquired Annoying Neuro Endocrine Immune Disorder" seems a little understated, "Acquired Nerve-Wracking Neuro Endocrine Immune Disorder" has a certain touch of verité that no other name does. Not exactly medical terminology, though...

 

[Sidereal]

Which to mind represents an intolerance to exertion. Other intolerances e.g. food intolerances wouldn't necessarily invoke an immediate reaction.

To your mind it does but what does it mean to a doctor? When a person who is unaware of the unusual phenomenon of PEM - which includes almost every doctor in the world - hears exertion intolerance they think someone who can't exert themselves. But if you're an ambulatory, not severely affected SEID patient you can exert yourself, you'll just crash later. If you're mildly affected and get a stress test, chances are you'll pass a one-day test, you might not even look sick while you're doing it and your medical records will say that there is no problem with your exercise tolerance because delayed reactions to exertion are not monitored. No one cares if you collapse for several days afterwards or if your heart rate takes a week to get back to baseline after a stress test.

By the way, food and other intolerances that don't invoke an immediate reaction tend to be regarded as psychiatric problems. Unless you have a clearcut allergic IgE mediated reaction you will likely be told it's all in your head.

 

[jamie]

It's all so vague. Unless you know about this disease already the name and the criteria don't make sense,

Systemic? hmm...??? vague

Exertion? does that mean exercise? How much? what kind? Vague

Intolerance to exertion? You don't like to exert? you feel bad after you exert? You can't exert? Vague

Disease. OK that is understandable.

Criteria is pretty vague too. Tired for 6 months, unrefreshed sleep and gets worse after exertion.

this could fit many people with depression, hormone issues...

Plus, most of us got very sick quickly so when we went around to doctors for help we might have only been sick a few weeks. I know at that time I had no idea about PEM, I was tired/sick/wired all the time. I had insomnia so unrefreshed sleep didn't fit. For me the biggest scare and what I was looking for was help with my altered brain. I thought It had to be some sort of brain infection.

What happens to most of us is scary and severe even for milder cases, This new name sounds like an inconvenience ,

 

[WillowJ]

There is also a strange rumour on the internet that "encephalopathy" means the condition is psychiatric

I once read in an online medical dictionary that it was ambigous (had a very broad range of meanings of things wrong in the head including organic brain disease, or could be used for psychological diseases). However, when checking more recently, I did not find this.

 

[WillowJ]

@zzz Does everyone with ME/CFS have endocrine issues or would it only pertain to one of the sub-groups?

I think subgroups and risk factors.

ETA: Oh,sorry, I see you were asking someone else.

 

[adreno]

It is clear to me just from reading this thread that the patient community will never agree on a name.

CFS is an intolerable name, ME is unsupported by evidence, neuro-immune is nonspecific, and Ramsay's is discouraged by the WHO. For these reasons, IOM will never get behind those names.

Therefore, I feel that we as a community should accept SEID for now, although it is far from perfect, and simply move on.

 

[Sidereal]

I once read in an online medical dictionary that it was ambigous (had a very broad range of meanings of things wrong in the head including organic brain disease, or could be used for psychological diseases). However, when checking more recently, I did not find this.

Yeah, it's non-specific so less likely to be met with significant opposition than encephalomyelitis which has been rejected. Some kind of brain dysfunction, we're not quite sure what. Hard to disagree with that given the current state of the evidence.

 

[Sean]

One argument against myalgic encephalopathy is that, according to the IOM, pain (myalgia) generally doesn't seem to discriminate diagnostically, even if the majority of patients report it. (Which doesn't mean it isn't part of the disease, isn't important clinically, or doesn't need to be properly treated.)

I am pretty sure the IOM are quite aware that the name SEID is a somewhat awkward compromise, but as I said previously, we are running into the limits of what language can do for us here, particularly given the current state of the science, but also the politics of it all. We are going to have to live with compromises.

A new, if only somewhat better, name at least might open up the chance to get things moving forward in the right direction.

If the name is the worst thing that comes out of the IOM report, we haven't done too badly.

I personally don't like having to spell out acronyms longer than 3 letters, and I don't think I am alone in that. PTSD is a bit of a mouthful. It is better if they are constructed to be pronounceable as a single word. Something like I previously suggested:

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)

My preference would be for SEIND.

 

[MeSci]

Just a couple of things to add to this very-busy thread!

Can people think about encephalitis? Do we not have this? I was thinking partly about the microglial inflammation which I think has been found. EDIT - I think I mean microglia-mediated inflammation - my brain wasn't yet properly awake!

I think that AENEID, whilst being a good description, is too long as an acronym. Perhaps the 'E' could be left out, as neuroendocrine can be one word, and is appropriate in view of our HPA dysfunction. There is info about the HPA here.

I also think that people unfamiliar with Greek or the classics will also struggle to pronounce Aeneid. AENID wouldn't necessarily be any easier.

I have an additional, vague suggestion, which could perhaps be played with and variations investigated/suggested:

AMIS

Acquired multisystem impairment syndrome.

 

[lansbergen]

Acquired multisystem impairment syndrome.

That would cover it all.

 

[Sean]

I like the PEM concept being in the name somehow. That is one thing going for SEID, at least it is trying to accommodate that concept.

 

[MeSci]

I like the PEM concept being in the name somehow. That is one thing going for SEID, at least it is trying to accommodate that concept.

Yes - and the word 'systemic' should be able to distinguish it from simple exertion intolerance that occurs in other illnesses and only affects one or a few organs or systems, whereas ours affects multiple systems/parts of the body. Our bodies as a whole cannot accommodate exertion.

The underlying mechanism for this appears to be our inability to produce enough ATP aerobically. I had a quick think about how to express this in simple terms but not much success yet. It's a defect in aerobic respiration.

 

[Andrew]

At the presentation they defended naming the illness in a "describe symptoms" way by saying there is a long-standing tradition in medicine for this. If this tradition is still alive, there should be slews of diseases named this way. But I can't think of one. And Latin doesn't count, because Latin makes it sound medical, official, and originating from higher levels of scholarship. SEID is not in Latin. And they chose not to name it in Latin.

 

[Sidereal]

@Sidereal

What is the difference between encephalomyelitis (which sounds like inflammation of the central nervous system) and neuroinflammation found in the brain/spinal cord (which also sound like inflammation of the central nervous system)?

Encephalomyelitis means severe inflammation of the brain and spinal cord involving lesions where demyelination has occurred. A disease featuring this kind of damage is multiple sclerosis, for instance, which is also referred to as encephalomyelitis disseminata.

Neuroinflammation is a relatively new term and it just means inflammation of the nervous system. This is characterised by activation of the microglia. Microglia are macrophages (type of immune cell) in the brain and spinal cord. This type of inflammation is not obvious on routine brain scans like say an MRI your doctor might order.

 

[Purple]

Neuroinflammation is a relatively new term and it just means inflammation of the nervous system. This is characterised by activation of the microglia. Microglia are macrophages (type of immune cell) in the brain and spinal cord. This type of inflammation is not obvious on routine brain scans like say an MRI your doctor might order.

Thank you.

So if neuroinflammation is a new term, it may not have been around in the 1950s?
In the 1950s when the name for ME was coined, based on observations of symptoms pointing towards the CNS being inflamed following an infectious trigger, encephalomyelitis would have made sense then? And the meaning of the word could have shifted since the 1950s?

 

[Dolphin]

To your mind it does but what does it mean to a doctor? When a person who is unaware of the unusual phenomenon of PEM - which includes almost every doctor in the world - hears exertion intolerance they think someone who can't exert themselves. But if you're an ambulatory, not severely affected SEID patient you can exert yourself, you'll just crash later. If you're mildly affected and get a stress test, chances are you'll pass a one-day test, you might not even look sick while you're doing it and your medical records will say that there is no problem with your exercise tolerance because delayed reactions to exertion are not monitored. No one cares if you collapse for several days afterwards or if your heart rate takes a week to get back to baseline after a stress test.

A doctor can be told what it means the term means (that there is a delayed reaction) by the patient and in education programs (and articles in the literature). Post-exertional malaise is listed as a defining symptom which means it's the response after exertion that is abnormal.

A doctor will be less likely to think they already know what the condition is with a term like "systemic exertion intolerance disease" than with "chronic fatigue syndrome".

And a doctor will be much more likely to look out for an abnormal response to exercise with "systemic exertion intolerance disease" than a name that doesn't mention exercise or exertion in the title.

If you're mildly affected, I think this illness is going to be difficult to spot. Symptoms tend to be less severe and less frequent if one is mildly affected. Quite a lot of people in the population get headaches, have some fatigue, some pain, etc so symptoms may not stand out. But the way it is most likely to be spotted is looking at the effect of exertion and exercise.

 

[snowathlete]

It is my understanding that the name SEID is simply a recommendation and that NIH/HHS would have to act to officially change the name. If that is the case, we have an opportunity to air our concerns before an official name change is made.

I doubt we are going to get much play with the "we don't think it sounds serious enough" argument. They don't care how we feel about the name. We need harder arguments. One strong argument is that Systemic Exertion Intolerance Disease does not translate into other languages at all. We need medical words that have clear meaning in all major languages. Another is that Exertion Intolerance is far too similar to Exercise Intolerance, which is well known in the medical world and therefore much too easily confused leading to misdiagnoses. I'm sure we can come up with other unemotional arguments for a better name.

We are not going to get a new name they feel there is not evidence for. That means anything with myalgic or encephalomyelitis is out. They've already been very clear on that, so let's not waste our time. They may be wrong, but we don't have enough scientific evidence to support using either of those words. It's as simple as that. Neuro-immune is apparently too general for them since other illnesses also affect neurological and immune systems. Neuro-immune exhaustion may fly as more explicit.

I support the WHO's discouragement of eponymous disease official names. It's just better all around to stick to descriptive names. However, since a descriptive name is not really possible with a very complex disease with multiple system involvement AND which has practically no research base, perhaps a temporary eponymous name is in order. They've already admitted that any name currently established is temporary, so do we need to fuss over eponymity at the moment?

Even if we go with an eponymous name, Ramsay's Disease is probably out since there are already too many Ramsay associations in medicine. They simply aren't going to go there, whatever we lay people think. Perhaps some other eponymous name for temporary use would do, say Mirza's Disease after Sophia Mirza. The average person doesn't have to know who Sophia was.

All that said, I think we are both better off with -- and far more likely to get -- a descriptive name. We can whine all we want that that discouragement of eponymous names is unreasonable in our case. It's not going to change their thinking, so we are wasting our energy. We need to choose our battles carefully, especially with our limited energy and resources.

How can we combine our individual efforts most effectively to get the NIH/HHS to give us a name both we and they consider acceptable, even if it isn't ideal? None of us will agree on one single perfect name right now. What do we most want the NIH/HHS to know about a new name? Can we get behind a name, or at least a few simple, logical ideas about a name so that we can present an solid, intelligent front and not sound like a bunch of whiny children ("But we don't liiiiike that name! It doesn't sound important enough!")

And let's not forget that whatever the NIH/HHS decides only applies to the US. This is not a WHO-mandated decision, so it's probably not relevant how the NHS is going to view it (for example). If it doesn't fit their agenda, they are not going to adopt the new name until the WHO forces them to, and that's not going to happen in any big hurry.

I think you made a lot of good points.
I think with the way it has gone down in the media as "yet another name" for this disease, changing it again may not even be in our best interests at this stage. Although SEID hasn't formally been accepted, the media have already gone with it in quite a big way. If P2P comes out and uses it now then that will just cement it further. And the NIH having paid for this report, I don't really see them doing anything other than adopting it either. My guess is that the UK will follow suit after a bit of a delay, but there is obviously more uncertainty and it is harder to predict.

As an aside, I wonder what impact this new label would have on disability claims? Probably an improvement, I would think, as it gets across that unnecesary exersion is important to avoid.

 

[Sidereal]

Thank you.

So if neuroinflammation is a new term, it may not have been around in the 1950s?
In the 1950s when the name for ME was coined, based on observations of symptoms pointing towards the CNS being inflamed following an infectious trigger, encephalomyelitis would have made sense then? And the meaning of the word could have shifted since the 1950s?

Well, encephalomyelitis is a type of neuroinflammation, it's just that it has a far more specific meaning in terms of pathology. Neuroinflammation is not a specific disease, it's a term denoting inflammation in the CNS so it's not something you could use to name a disease. It's not "a thing" a neurologist would say you have; it's just a broad concept.

At the time of the Royal Free outbreak when the term ME was coined there was no neuroimaging technology yet so it wasn't exactly easy to tell what was going on in a living patient. Neurology was a joke in the 1950s. My impression from reading Ramsay's book (which was written in 1986 if I remember correctly) is that he thought an infectious inflammatory process was going on, possibly/probably an enterovirus in the CNS and muscle but there was no definitive evidence. He went with encephalomyelitis. If I'm not mistaken he was an infectious disease doctor. But, as you know, many others were not convinced by ME and there was that infamous mass hysteria paper in 1970 by two psychiatrists which was quite influential in terms of swaying opinion.

I read a later edition of Ramsay's book in which he also discussed the "chronic Epstein Barr" concept which had emerged in America in the 1980s and he dismissed EBV as a cause due to its long incubation period. Autopsies of people believed to have ME were few and had not been particularly informative and one case where encephalomyelitic lesions were found the person had a pre-existing diagnosis of MS if I recall correctly. Focal neurological signs occurred in a minority and the signs (and symptoms) differed quite a bit between the patients. Plus, the disease (as we all know) looked quite different once the acute viral phase was over and the patient entered the chronic phase.

He describes the disease and how one should go about diagnosing it and he spends some time explaining why he thought the "hysteria" explanation was untenable. I thought it was quite interesting that he pointed out that muscle power will often be normal when the patient is rested and not in a relapse so what you need to do is exercise them first and then retest how they're doing. His core symptom was this rapid unusual fatiguability of the muscle which took days to recover from. He also talked a lot about autonomic dysfunction in this disease and even orthostatic tachycardia is mentioned. These key features of the disease (PEM and dysautonomia) totally disappeared from or were downplayed by the most influential case definitions (Oxford and Fukuda). All of this early clinical wisdom was forgotten/buried once we entered the dark ages of the 1990s when psychiatry took over and people had "chronic fatigue".

Obviously he was a thinking person with a good clinical eye who actually had an interest in this disease and understood its features unlike psychiatrists and CDC bureaucrats who came up with ludicrous case definitions obviously designed with the purpose of limiting disability payments. I think if Ramsay's case definition had been modified for research use we might have been spared some or a lot of the chronic fatigue nonsense that followed in the aftermath of CDC's "investigation" of the Incline Village outbreak.

Please don't quote me on the details or disseminate this post. I read the book quite some time ago and my memory is foggy because I have "SEID".