A Rose By Any Other Name: ME. CFS. SEID.

What’s in a name? That which we call a rose
By any other name would smell as sweet.

Juliet did not care that Romeo’s surname was Montague; she saw beneath that meaningless convention. But Juliet was unique and she was thinking with her heart and not with her head – doing so can be dangerous, especially if you fail to recognise that to others, names do matter.

So why does the name matter? The Institute of Medicine (IOM) have this to say in their report:
“Conclusion: The committee agrees that the term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness.”

With regard to ME, they say this:
“The committee…was concerned that the term “encephalomyelitis” is not well supported by the evidence and that there is substantial controversy surrounding the two versions of this name [the other being CFS]. Neither version conveys the full complexity of this disorder.”

They then tell us what they have come up with and why:
“the committee recommends that the disorder described in this report be named “systemic exertion intolerance disease” (SEID). “Systemic exertion intolerance” captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder.”

I have taken my time then, this past week, to contemplate this new name. I am not as young as I used to be and no longer fall in love easily and so unlike with Juliet there was no love at first sight. Nevertheless, my adoration for Systemic Exertion Intolerance Disease (SEID) has grown as time has past.

Most people seem to fall out with the word Exertion, but to me this has it’s benefits. It occurs to me that this name hurts those promoting exercise therapies as the answer to our illness precisely because this word is present. No bad thing. No bad thing at all.

Systemic is good, and Disease is good. Very good in fact. It says this disease is complex and serious and that it is real.

The word I dislike the most is Intolerance. The first thing that came to mind was a conversation I had with my gastroenterologist last year in which I explained that certain foods significantly increased the symptoms of my ulcerative colitis. She replied that food intolerances were just that, intolerances, and that it wasn’t much to worry about because the bigger problem she sees in some patients are food allergies. I found this irritating. I wasn’t claiming to have food allergies because I didn’t have them, but I sure had intolerances and they shouldn’t be written off just because they weren’t as serious as food allergies.
So when I saw this word, Intolerance, I thought that some may read that as a reaction but nothing too serious, which couldn’t be further from the truth of ME/CFS.

Nevertheless, taking the name as a whole, it is accurate. We do have Systemic Exertion Intolerance. But the disease is about more than that isn’t it? I think it is. I am ill even if I do not exert myself beyond breathing (which I find myself unwilling to give up).

But I started to consider the context a bit more. What’s the alternative?

Some people remain adamant that ME is better and should have been fully embraced. Whereas ME is unquestionably better than CFS, it is actually a pretty crumy name because it is not accurate. We can’t on the one hand cry out that we dont want poor science like PACE because it is not evidence-based while at the same time adopting a name without good scientific evidence to back it up.

I think a lot of people have become very attached to the ME label, having fought hard to retain it over the years, but that only made much sense in an environment where the only alternative was CFS.

I think people still wanting ME as the name need to think harder about that because it isn’t accurate – I’ve read most of the ME/CFS research and there just isn’t enough strong evidence to support the label. And that is one reason why it was easy to replace with CFS in the first place, because the ME label was on shaky ground.

And ask yourself – what has the ME label done for us? Sure we are fond of it, in comparison to CFS which most patients universally hate but is that enough? Is the history of the name worth much? I don’t see that it has all that much going for it.

I agree with the view that SEID does not fully encompass the disease, but it is certainly an accurate element of it. Is there a better name? I’ve yet to hear one – the only improvement I saw suggested was to change the word intolerance for dysfunction but that isn’t without its drawbacks.

I myself would very much like the immune system to be part of the name in some way, but I fail to come up with anything suitable. We have immune dysfunction, clearly, but it isn’t as simple as deficiency – a strong argument can be made for an over-, rather than an under-active immune state. Immune dysfunction disease obviously isn’t specific enough.

Taking a bit more context into account, the IOM report is very good. It blasts the abuse we’ve received as patients, degrades psychological explanations for the disease and draws attention to the dire need for more good quality biomedical research. And the jewel in the crown is its talk about definitions. It highlights the problems caused by polythetic diagnostic criteria such as Fukuda and talks of the importance not to focus on fatigue but to recognise and investigate other symptomatology such as orthostatic intolerance, pain, unrefreshing sleep, cognitive dysfunction and immune dysregulation, and in talking of anxiety and depression it refers to these as secondary symptoms (i.e. can be present but are not core to the pathology of the disease).

They propose a new diagnostic criteria for the disease:

diag

Many advocates have been calling for the Canadian Consensus Criteria (CCC) to be adopted, a clear improvement on Fukuda, but it has its drawbacks, not least the reality that government has resisted its adoption for more than a decade – just like the name ME it is carrying baggage. And although the CCC or the International Case Criteria (ICC) were authored by some very well respected people, these definitions do not carry the credibility and influence that the IOM does.

Proposing this new definition – which joyously includes not only post exersional malaise (PEM) but also orthostatic intolerance and cognitive impairment – begins to make a lot of sense and there is no question that it is a big improvement on Fukuda. Coupled with the P2Ps recent suggestion that the Oxford definition should be retired, we are talking about a big leap forward here.

The name SEID is not perfect, but it is pretty good and I’ve seen no better suggestion. The IOM panel saw no better suggestion either and they say they considered more than 100 suggestions. Given their very good report, I am inclined to believe them and trust in their experience. They clearly want what we do: progress. And having the IOM as a partner in that regard is something I am more than happy to fall in love with.

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11 thoughts on “A Rose By Any Other Name: ME. CFS. SEID.

  1. The word (stress) had multiple meanings also. Good doctors knew that it was caused by overdoing mental tasks, (mental stress) or (physical stress) & an infection could cause stress to the body thus causing (fatigue). The problem being is that we have again a name with one symptom. People reading about “exertion” are going to think it is just that, look up the meaning. Just like people reading “fatigue”. Exertion can be getting cleaned up & going to the doctor, but that is now what people think or doctors who are not familiar with the disorder. This name tells the world after you run 5 miles it something bothers your body.

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    • The name is very focused on exertion, that’s true, and there is a danger that people will perceive the disease as being all about that when in reality we are sick even if we don’t exert ourselves. But exertion isn’t a symptom, and although the word intolerance makes it clear that there are symptoms as a result, the only clues as to what type of symptoms is given by the word ‘systemic’, which suggests multiple symptoms. That is a definite improvement on CFS which places all the emphasis on the singular symptom of fatigue and then plays down its severity with the word ‘syndrome’.

      No matter what the name, we are always going to have trouble getting across to people the severity and range of the symptoms we experience and the fact that even very minor exertion will result in those symptoms increasing. The big win here, in my view, is that we appear to have gained an influential ally in the Institute of Medicine. We are a disease in dire need of allies to help get those messages across effectively.

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    • Life with ME/CFS/SEIN is like the film Groundhog Day, every day is the same, nothing changes, the music on the radio is the same every day when you wake up signalling a day just like the last. Any change is good change when you wake up the radio is playing a different song.

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  2. I have to say my immediate reaction to SEID was a negative one. There’s no doubt that it does describe our disease better than any other of the definitions so far but I think the stigma is still there. In the same way that people say “CFS? you’re tired all the time, everyone gets that, you’re just being lazy.” You can say the same for SEID, “what? you mean you’re allergic to exercise? you’re just lazy.” It creates the same kind of disbelief, maybe its because of having the label CFS already but this is the first thing i thought of when i saw it.
    But while I don’t like the name much more than CFS, i agree that having the IOM on side can only be a good thing.

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  3. It amuses me how pre-IOM report, so many in our community were insisting that it’s all about Post-Exertional Malaise, not fatigue. Now that IOM agrees — the same IOM many of our fellow patients have spent over a year railing against — those patients now insist that exertion isn’t what it’s all about. Methinks it’s not just ME that many patients are attached to but also to conflict with IOM and HHS. I get the anger. We’ve been treated appallingly for 30 years, and the way HHS handled the IOM contract initially was duplicitous and disrespectful, thus underlying that 30 years of mistreatment. Many of us (myself included) have spent our prime years in bed and our losses are staggering. We want somebody to blame and to whom to vent our very legitimate rage. But at the end of the day we must focus our anger in effective ways and let it go when we it’s time to grab hold of something positive.

    The IOM criteria is basically streamlined CCC criteria. And while recommendations on treatment were beyond the charge HHS made to IOM, the name makes a very strong comment on what treatments are not appropriate. I don’t know any medical provider who would tell someone with glucose-intolerance to gradually increase his or her sugar intake.

    The name isn’t great. But it’s better than CFS or ME. And as Peter Rowe said in one of the flurry of articles last week, it doesn’t have to be permanent. If the IOM recommendations are followed, there should be another committee in the next five years to evaluate the new research and whether, among other things, if that new research suggests a better name. In the meantime, it’s up to us to provide the cultural context for SEID. To make it so that when people think SEID, they think of sick people.

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    • With the last year spent expecting the worst, I think some people have found it hard to adjust to the report being the opposite of awful, the opposite of what they were told it would be. It’s much easier to charge on regardless than to re-evaluate the situation and change direction.

      And regardless, it’s no use fighting yesterday’s battles, today.

      Fortunately, there are plenty of us out there who are pleased to accept these gains, and put our energy into tackling future battles effectively – and now we have allies. There is a long way to go yet, and we must be vigilant, but things are better now than they have ever been before. If you are really sick and struggling to keep going, don’t believe the shouters claiming doom and gloom. We are getting there.

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  4. What’s in a name?

    For 15 yrs, I have said that anything would be better than chronic fatigue syndrome . Lately I have withdrawn that statement . In my opinion, I think Systemic exertion intolerance Disease is worse. And cumbersome.

    First off, I can’t remember the name. It has been out there a week and I had to refer to the article for the full name. I can remember SEID, fortunately. The name does not “roll of the tongue. Systemic, to me does not come off as “complex and serious”. I don’t think that people will pay much attention to the word systemic. Systemic comes off as trite in this world of technology . “Work within the system.” “System analysis”.

    Also, SEID, makes this a 1 symptom disease. Stop exercising. Fixed.

    What about immune dysregulation? Pain? IBS? Cognitive problems? Neuropathy? Dysfunction of the APH? Insomnia?

    I don’t feel that it conveys this as a serious and life altering disease.

    You say that “Whereas ME is unquestionably better than CFS, it is actually a pretty crumy name because it is not accurate. We can’t on the one hand cry out that we don’t want poor science like PACE because it is not evidence-based while at the same time adopting a name without good scientific evidence to back it up.”

    What is inaccurate and unscientific about M.E.? On The Hummingbirds’ Foundation web site they
    say “M.E. is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis.” What is incorrect and unscientific in that definition?

    Dr. Richard Horowitz,MD came up with the name Multi System Immune Disease, M-SID.I could live with that.

    Last August I saw Dr. Anthony Komaroff for the 1st time and he said that I have a “medically undiagnosed Disease”. Not sure what to do with that moniker.

    On Facebook I found ” Systemic Chronic Relapsing Exhaustion With Exertion Disease (SCREWED). I like this one. Pretty much says it all.

    I hope that Dr. Rowe is correct in that it could change. The sooner the better.

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    • My point about the label ‘myalgic encephalomyelitis’ not being scientifically accurate is that the words are not backed up by enough scientific evidence. It is not a problem with the description of the disease like the one you quoted from Hummingbirds, but with the actual words ‘myalgic encephalomyelitis’.

      Myalgic encephalomyelitis: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation (so, muscle pain and brain/spinal cord inflammation). The primary problem is with the word encephalomyelitis because there isn’t much peer-reviewed scientific evidence of that supposed brain and spinal cord inflammation.

      That is what the IOM mean when they state that ‘…the term “encephalomyelitis” is not well supported by the evidence…’
      And that is why they couldn’t suggest it as a label, because they were tasked with suggesting something based upon the scientific evidence.

      I like the sound of Multi System Immune Disease but of course it is not specific enough; the same label could be given to a variety of different diseases out there. The problem for the IOM was that with limited evidence available, they had to come up with something that was accurate, defensible, and specific. Not easy.

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  5. Ask to see the business base that clearly shows the true cost/benefit analysis of changing the name to SEID vs ME. It needs to include all the implications and downstream ripple effects. I’ll beg it overwhelming supports using ME.

    You want research? Then push going with the 50+ experts, CCC, ME and code g93.3 until there is concrete evidence to change it to a name that reflects the science. There lots of good science to support i. It just needs to be more robust which it can be if we get on with a focus on research and not on implementing SEID. Do you know if takes avg 17yrd to get something like SEID into clinical practice. We’re at the 12 yr mark with CCC and over 30 with ME. We start fresh with SEID. Money will go to educating about SEID that should be going to research. This report will hurt patients and if they change it again in 5 yrs hurt us even more as the clock will start again. We deserve better and we deserve research and solutions now. SEID will just split the international community and divide patients. What we had with the 50+ experts and the patients rallying behind them was unprecedented. We need to get there again so we can move forward united. We need international consensus not a US defn and the rest following CCC ME G93.3.

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    • Although I was behind the campaign for everyone to listen to our experts and adopt the CCC, they said “no”. There is no point in fighting yesterday’s battle. We already lost it. The community needs to focus on battles in which outcome have not yet been decided.

      The IOM rightly cannot name the disease ME in the hope of future evidence to support it. It has to be based on today’s evidence. Otherwise they would be no better than the authors of PACE, reaching conclusions without the evidence to support them.

      I hope the community can come together and unite on common ground. Without more research, nothing else matters that much. The IOM state in their report that they were “…struck by the relative paucity of research on ME/CFS conducted to date in many areas related to the disorder…” and then go on to state that “…more research is essential.”
      The IOM is influential and my hope is that we will begin to see more research funds made available. This is exactly where our community needs to focus and apply pressure, because it is something we can all agree on – research is essential and we need money to do it.

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