The New Name - Three out of Four Ain't Awful, But Is It Enough?

Did you read the whole IoM report? I did, which is one reason this blog is coming out now, days after the big announcement. I've also had a PEM crash, or I'm coming down with a virus; at this point I can't tell which.

If you have not read the whole report, you're not alone. Clearly most reporters doing reports on the report have not read the report. Likely, most doctors won't read it either. And Congress? Yeah, right. But some in the government health agencies will read it. And so will some journal editors (or I guess they have already).

I was like a man whose wife was going into labor the days before the release. It was going to be great or awful. But either way, it was going to be a big change. I coped by using two strategies: I planned a ritual to look forward to either way, that is a margarita (virgin if good, with some alcohol if not). And I lowered my expectations.

As to the latter, I figured it was not going to be perfect, and I was not going to get all I wanted. Decisions made by committee are by nature reflecting diverse opinions. Areas of disagreement require compromise.

So, I said I would be happy if two things happened: that what is recommended is an improvement, and that there is not dissent of committee members. If some gave a dissenting opinion, then money wasted, and we're left with status quo.

I think the IoM's report does meet those two requirements I had. Yet, when I listened to the public briefing, my gut reaction was disappointment. Since then I have felt conflicted. I have tried to change my feelings. But, they are still there.

Still, despite my feelings, I will support this change. I'll tell you why in a moment.

First, I want to remind you, dear reader, of some of our experts who served on this committee: Dr. Ben Natelson, Dr. Lerner, Dr. Nancy Klimas, Dr. Ron Davis, Dr. Lily Chu, Dr. Lucinda Bateman, Betsy Keller and Dr. Peter Rowe.

And, here are some of the reviewers: Maureen Hanson, Dr. Charles Lapp, Dr. Susan Levine, Dr. Daniel Peterson, Dr. Jose Montoya, Christopher Snell, Dr. Susan Cockshell, Dr. Katherine Rowe, Dr. Ruud Vermeulen and Yasuyoshi Watanabi.

Recognize any of these names? These are researchers or clinicians focusing on our disease, including a few with personal experience either by having it themselves or by a family member having it. That's at least 18 of "our experts" involved. It's almost a who's who of experts in our disease either writing the report or reviewing it.

SEID - systemic exertion intolerance disease

What I like: "systemic," "disease" and "intolerance."

"Systemic" is perfect for indicating the biological impact. I'm sure there were some committee members who fought to have in the name their theory of the major system that is the cause or effect. But look again at the list of "our experts" and note what difference of opinions they have. Klimas will say it's system-wide immune dysfunction. Keller will say it's in the energy system. Natelson will say it's the brain. Lerner will say it's viral. What can be agreed on and is supported by the evidence is that multiple body systems are impacted when patients exert themselves. And "systemic" conveys that. "Systemic" makes it clearly physiological and is supported by the science and encompasses all theories of "our experts."

"Intolerance," while having an attitude aspect as one of its definitions, also refers to physiological adverse reactions to what should be handled fine in healthy people. Some examples are  alcohol intolerance, gluten intolerance, lactose intolerance, lysinuric protein intolerance, orthostatic intolerance and exercise intolerance. Gluten intolerance is a fad diagnosis now. But it is a true medical condition. So in a medical context, "intolerance" denotes an abnormal and adverse body reaction.

"Disease," well, this one I am most pleased with. Thank you, thank you, thank you. They rejected "syndrome" and "disorder." Even some things that cause death (AIDS and SIDS) still have "syndrome" in the name. We all know "syndrome" is so broad that it is used for nonmedical situations, including Peter Pan syndrome, Cinderella syndrome and even referring to society responses. It was a bold move, some might say a leap, for this committee to go with "disease." And that word is packed with meaning. This committee is sending a strong message to doctors with that word. Why I've even heard some of our experts say "disease" is only appropriate after etiology is known. Not so, says this committee. It's a disease.

What I don't like: "Exertion."

I join with fellow patients in saying that indicating our disease is about bad effects from exertion is too narrow for a description of our disease. First, for most of us, it's activity, not just what the world thinks of as exertion. When I sweep my floor for five minutes, I must then rest for two hours. My body cannot tolerate that activity. It's not just when I run a marathon or lift weights, what the world and doctors will think of as exertion (as though I could). Secondly, it implies that as long as we don't exert ourselves, we won't have any symptoms. Just go to work at your desk job for 8 hours, rest for a few minutes then fix supper. Just make sure you have a healthy person open that jar for you so you don't exert yourself. Because of that, I would have preferred "activity intolerance."

Plus, it's also stressors, such as infections, psychological and other physical stressors, that we can't tolerate without getting PEM. But I don't want "stressor" in the name because people will think just "stress."

I am also concerned it might become the butt of jokes of people who are lounging and don't want to exercise or clean out the garage saying they have "exertion intolerance disease." "Leave me alone," a man says to his wife while eating nachos while watching his favorite football game. "I'm feeling sickly. I think I have exertion intolerance disease." However, that has not happened with exercise intolerance. But that is a symptom, not a disease name.

That brings me to another point. I agree with Prof. Leonard Jason that they should have tried the name or some names out on a focus group, the public and some docs. How does the public view the name? What does it make them think? We really don't know because it hasn't been tested. And yet, last time an organization did a focus group study, the group said the name should remain "chronic fatigue syndrome," just educate the public more on what the disease encompasses. Can't always trust focus groups. And to do that would have required time and likely money, money they may not have had.

I'd like to see what Dr. Clayton says are examples of other diseases named after one symptom when the pathophysiology is not known. I'm sure she's right, else she wouldn't have been so definite about it in such a public way. I have heard of one or two, but not many.

One example is yellow fever. And that name hasn't changed. It's based on two clinical signs, not the biological mechanism. I'm sure the disease has other symptoms, too, besides fever and jaundice. And then there is the awful name of mad cow disease. What an awful name to call a disease that kills humans! We aren't the only ones with bad disease names. It would be pretty interesting to read through disease names and see what it would mean to you if you didn't know anything about the disease. Werewolf syndrome, as an example. Vampire disease is another. Yellow fever could mean people feel feverish from seeing the color yellow. Mad cow disease? Does that mean the person starts mooing all the time like a crazy cow? 'nuf said.

I will say, though, that maybe doctors will stop suggesting SEID patients take up a rigorous exercise routine by understanding the name. I can see a patient asking, "Doc, when I feel the fatigue, should I push through?" And he says, "No, your body has a system-wide intolerance to exertion. So, you should be careful to not push. And you need to make sure your family understands this. There are limits of what and for how long you can do things. You will make your symptoms worse if you exert yourself." So, even with the word "exertion," I can see some benefits. How many of us wish our doctor told us early on to not push through the fatigue?

Why am I supporting the name change anyway? I can understand why "activity intolerance" might have been rejected. Even the bedbound are encouraged to do some activity, even if it's finger raises for only three minutes a day. Our experts have cautioned us on deconditioning being a real consequence. Depending on the level, both Dr. Lapp and Dr. Klimas encourage some activity, but pacing and with limits. So it isn't exactly accurate to say our bodies can't tolerate any activity. After my first year (2003) of the on and off respiratory infection(s), I went into a stage of full function for about five hours each day (11 am-4pm). I don't mean hiking. I mean desk work and running errands, etc. At about 4, the plug at the bottom of my feet would come out and all the energy would drain out, or that's how it felt. I met the criteria because most people can be active 12 hours a day. Despite the limitations, I was still able to tolerate some activity, until my plummet in 2006. For three years, I could tolerate some activity. And even now, I can do some without a crash, but much less.

And, remember advocates, haven't most of us been saying, "It's PEM, stupid"? We, that is many of us, have been telling "them" that the defining symptom is PEM. And note, "post exertional malaise" has the word "exertion" in it. Be careful what you ask for.

As I predicted, "myalgic encephalomyelitis" was rejected because the science for that name has not been proven in big enough studies. And even if it's there, it's not for sure that inflammation of the brain is at the root of the symptoms. In multiple sclerosis, it's clear the multiple sclerosis in the brain causes the symptoms. But with other body dysfunctions in our disease, namely aerobic system dysfunction, HPA axis dysfunctions and system-wide inflammation, has it been proven that brain inflammation is the primary symptom cause? And even some of our experts feel that there has been no proof of spinal cord inflammation, even though there is evidence of inflammation around the spinal cord. I have heard some of our experts say "encephalopathy" is more accurate. And the report mentions that option, but they still rejected it for the same reason. We must realize that if the committee came out with "encephalomyelitis" based on studies of no more than 300 patients each and based on a flimsy criteria and not in comparison with other fatiguing illnesses and with disregard to the abnormalities in other body systems, then it would be rejected in the marketplace of medical professional societies and mainstream docs. I don't know what level of proof they need. But I'm sure there were people on this committee and reviewers who said it should be "ME." And I'm sure they knew rejecting it would be unpopular with many patients. So, for the committee as a whole to reject it means our own experts were not convinced it was the best option and felt strong enough to go against popular opinion. I respect that. They know the disease just as much if not more than me. And, they have a better understanding of what fellow doctors will accept.

And I must agree, myalgia is not a major factor for me; never was. Oh, I had it, still do sometimes. But it isn't major, and I would be hard-pressed to distinguish the difference in the fibromyalgia pain and pain of ME in describing it to a doctor. And I bet the average doctor would have a hard time with distinguishing myalgia of ME from myalgia of fibromyalgia. If pain is a major factor, then you likely also have fibromyalgia.

For those who still insist on "ME," may I also note that you may be loud, but you may not be the majority. When the IoM committee asked four patient representatives (two patients and two relatives of patients) what name they think it should be, none of the four longtime advocates said "ME." Canary in a Coalmine just did a survey. Less than half said it should be "ME." Granted, it was more popular than any of the others, but not more than the others combined. It was less than half that chose that as the best name.

Besides, it took me a year to learn how to pronounce it. And it has a lot of misinformation, stigma with it in the UK. Using "ME" does not do away with the misinformation and stigma, no matter what the words mean. The UK treatment studies go with "ME."

My suggestion was "commeo encephalitis." I figured "commeo" is Latin and means up and down, back and forth. This would communicate to doctors that our symptoms fluctuate, so you can't go by what we can do or how we look when in the office. And I figured there was more evidence for inflammation in the brain than the spinal cord. Plus, it's nice and medical-sounding. But, you know what, some of you would disagree with my choice. And I'll admit, it isn't good for the severe cases.

Is there a perfect name based on the science now? Probably not. I think about Ron Davis, whose son is bedridden. I think about him serving on this committee and being ok with this name, "systemic exertion intolerance disease," when seeing his son everyday unable to do the simple things. Davis said in a news article that the name thing was hard, and they went through about 100 choices. I think of Lily Chu, who has this disease. She served on this committee and has her name on the document suggesting this new disease name.

So, with some humility, as I'm sure the individual committee members had to have, I say I trust that this is the best they can do for now considering the state of the science and the differing opinions, even of our experts on the committee. If they can set aside their strong opinions to pull together for a better name, even if not a perfect one, then I can join them. I know they feel just as passionate about this as I do.

Besides, I like three out of four of the words, and it is better than "CFS."

As a sidenote: I have heard from multiple sources that "they" don't like naming diseases after people any more. (I don't know who "they" are.)

I tried out the new name on my husband. He said it conveys to him that the person gets sick from exertion. So, it is accurate, just incomplete. I told him some aren't happy about it. He asked what they suggest, besides "ME." I told him some like "Nightingale disease." He said, "After a bird? Why would you name it after a bird?" So I told him about Florence Nightingale's likely connection to the disease. He said, "But I think it's a bird too, and if it isn't it, sounds like a bird. It's a weak, feminine-sounding name." So, I told him another choice was "Ramsey's disease." He said that sounds like something Egyptian archeologists get. So, there you go. From a retired railroad truck driver. The words convey something different than what many of us think they convey. There is no perfect name that is based on enough scientific evidence to be accepted by mainstream medicine and for which all experts and patients will agree.

I'll take a break now and give you a break. I will blog soon about the other changes and features in the report.

Comments

  1. Thank you, Tina Tidmore, for sharing with us your thinking on the name change. I love the paragraph on your husband's reactions to other names that have been proposed -- funny.

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  2. Perfect response, Tina. TRUST OUR OWN EXPERTS! Loved that part! How egotistical of us to expect the IOM committee to see things exactly as each and every patient does and if they don't we're gonna whine and throw hissy fits. That's about the level of some of the responses I've seen. Time to get it together and pull together before this opportunity is lost.

    .

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  3. Well, I don't trust one or two. But when the views of this many of our experts are considered, with suggestions from patients, then I trust that their decision is as good as we can get now with so many different opinions out there. It's easy to be an armchair quarterback to this process. But, we don't know what they had to deal with. And, I do believe that consensus was more important than a perfect name. Without consensus, then the report would not have credibility. And there's a lot of good in it. If there was dissension, even over the name, it would give government agencies an excuse to do nothing.

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  4. "exertion intolerance" captures that mental exertion is also a problem -- exercise or activity intolerance suggests that it's only physical activity that causes a problem, so the patient should be perfectly capable of a full-time sedentary job.

    It's not the ideal name, but it's better than what we have.

    My only real concern with it, Dowsett noted that in 1988 when it was renamed CFS, all connection to the decades of ME research was lost. I'm afraid we'll now be having the same argument, "oh, that research was on CFS, but you have SEID, so it doesn't apply to what you have." Sure, there's a lot of psychobabble we'd like to get rid of, but the Stevens research that got us PEM and VO2 is something we really need to keep.

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    1. And many make the argument that ME and CFS are not the same. Following that logic, all CFS research does not apply to ME. Yet, in numbers, CDS research has revealed much more. So it is inconsistent to say they are different because of the different criteria for each then turn around and say CFS research, like what you reference, reveals ME abnormalities.

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  5. Thank you Tina for taking the time to put down your thoughts in this way.
    I agree that patients (and their advocates) should trust that the IoM committee made a really genuine effort to try to get this right. And yes, we do need to be a little more understanding of how difficult it was to do this task.
    However, having said that, I do think that the committee was put in something of an invidious position, by virtue of the way in which the IoM was contracted to do the job. Apart from the cloak & dagger secrecy of the contracting process, the $1m contract sum pretty much compelled them to produce something novel - hence they couldn't simply endorse the Canadian Consensus criteria. Their subsequent excuse that CCC is too unweildy / complicated for doctors to use in clinic is patently nonsense.

    It should also be recognised that the neglect and abuse of an entire patient population for more than a generation, breeds deep-seated distrust and suspicion of authority which will take a very long time to dispel.

    I don't agree that including the word "Exertion" in the name was inappropriate. Imo it is the right word to use because it encompasses all types of energy expenditure and from my own point of view "Exertion Intolerance Disease" is essentially what I have been telling people I suffer from for many years. Again, as has always been the case with the naming of this illness, the problem really comes down to the layman's interpretation of it.
    My issue with the name is that the addition of the word "Systemic", (whilst accurate and appropriate) just sounds a bit clunky. I am therefore inclined to shorten it to EID.
    But what is wrong with patients holding on to the name ME, which they have used and been loyal to all these years - inspite of the psychobable brow-beating they've taken in an attempt to change their beliefs?
    I still think that the evidence supports the conclusion that ME is the right name to use, and even if the latest brain inflammation studies aren't conclusive on that point, what does it matter? The name is symbolic and emblematic and I don't want to give it up.
    However, in much the same way that the ME community accepted ME/cfs, in the spirit of compromise (and until the evidence leads to something better), I would be prepared to accept ME/EID from now on.

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    1. Thank you for your comment. Scientists/doctors operate in a different world from us. If their name is on something, their professional credibility is at stake. if they endorsed "encephalomyelitis" when the symptoms may be from an anaerobic dysfunction (for which there is also evidence) or system-wide inflammation (for which there is evidence) then they have endorsed an inaccurate name. No matter the other benefits to the name "ME," in the doctor/scientific world, it's about accuracy. And if we want other doctors to diagnose it, the name must have credibility to the way they think.

      They explained why they didn't stick with "ME." And as I said, myalgia is not an issue for some of us who have all the other symptoms and are also severely limited. For three years, while I gradually got sicker and sicker after the year of infections, I had no myalgia. Only when I plummeted, that night, did the myalgia come. In fact, I tell people my ME(CFS came on gradually, but my fibromyalgia came on suddenly. So I agree that myalgia is not a major symptom of this disease and is not distinguishable from fibromyalgia pain, or at least not easily so.

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  6. The name is immaterial in the grand scheme of things. It's just another 'fatigue' type name with an acceptance of CCC's PEM. So why not accept the CCC it better still the ICC? How can we accept a report this only tells half the story? Will the psychiatric industry still have any role in this new disease? Will the CDC opt to stay with GET & CBT? Will UNUM recognise this disease for health insurance claims? Is it a step forward to merge Fibromyalgia with this new disease? How can that help research in either? It just sucks in more people with similar symptoms as CFS did in the 1980's. Both diseases need their own research and treatment. And last but definitely not least, how can a panel that included three members who have family members who have suffered Severe ME, then put their names to a report that totally ignores 25% of the sufferers of the disease? The Severe ME community are the real victims of the neglect and abuse of the last three decades under the CFS regime and demand recognition NOW!

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