Nosology is no longer the problem

[dean]

Everyone has who knocks up against this syndrome has their own take on this disease and Tucker and others are no different. It is the old story of the blind men describing the elephant each one insisting they were right and the others are wrong. Patients with ME/CF "syndrome" will turn out to have a number of different diseases with different etiologies, as seen in previous medical history....see dropsy, dementia,cachexy etc. Changing the name of ME/CFS each time someone is sure they have the answer is not the answer. Lets focus on the difficult problem of finding the etiologies of this well known syndrome and not the easy change of its name..it's a waste of our good remaining energy...Its been over thirty years. Every knows what we are talking about. A syndrome with multiple unknown etiologies. It has happened many times before in the history of medicine.

 

[Paw]

Well, assuming you're correct about multiple etiologies (and my gut tells me you are), there are still political considerations regarding disease perception: it can impact research interest, funding, and even the personal politics involving families and employers.

But I do agree it seems people are awfully quick to latch onto each new insight into disease manifestation, as if each breakthrough necessarily proved something definitive about etiology.

This is only sort of on topic, but I'm wondering if any of the latest research attempts to shine light on the gender disparity. This new Stanford study shows an intriguing gender disparity in the insular cortex' response to high stress, leading young females to be more prone to PTSD. I realize many of us don't like the notion that stress can be a trigger for some of us, but, it seems to me, the important thing now is gaining consensus that genuine, chronic biological responses occur -- regardless of the cause. It wouldn't surprise me to learn my own sickness was triggered by chronic stress, but I have no doubt others' had completely unrelated triggers. Even so, we might share very similar biological manifestations -- and we might benefit from similar treatments.

So, to me, etiology is not particularly interesting in a political sense. It's mainly interesting to the extent that it gives researchers (including us patients) more clues to understanding the whole puzzle.

 

[dean]

Hi Paw...
Its been 30 years since I got the flu one day in 1987. I remember it within 5 minutes of when it struck. So I have seen a lot over the years. One thing has remained constant. The name. I wouldn't want to change it since is now so well known. We know what syndrome (notice i didnt say what disease because that implies etiology) we are talking about and more and more people do. I have also lived through many official attempts to change the name......remember SEID's or something like that. People can name their own syndrome whatever they want....as for me, i have ME/CFS. I have sort of learned to love the name. When we know the cause, then I will be for changing the name, until then I will stick with it.

I am so happy that there is so much work being done now on our thing. I remember the old days. There are many many tantalizing leads. However, I learned a long time ago that t he first thing you do when you have a positive result is,not make policy on it, but repeat it.

I agree that stress may be one of the triggers. It certainly has been proved to be a cause in many diseases (sic). At this point we just dont know enough. The problem in research is the problem of the dependent variable. What is the definition of the group whose antecedents ie etiology, we want to study.....which brings us back to the start of this thread......Nosology..


There have been exceptions in the history of medicine, when we have been able to treat a syndrome without knowing the etiology but they have been rare and it's a crap shoot. For example a hot bath makes me feel better.....but unitl we know what is the cause of the syndrome, or I should say causes, because I think we are dealing with a number of diseases....we have to keep plugging away

 

[weyland]

Nosology is way more than just naming of diseases. And this issue is about way more than just a name.

To be honest, chronic fatigue syndrome is actually a perfect name for what it was originally intended as, which was a research framework in which to study persistent fatigue of unknown origin. It's often stated that the original CFS criteria (Holmes '88) is a response specifically to the Lake Tahoe cluster outbreak, but I don't feel this is true by any means. Instead, it was used as a tool by the CDC to deflate the growing belief in a chronic epstein barr virus syndrome, an idea that had taken hold in the minds of clinicians and patients starting several years before the Tahoe outbreak, caused by a flawed understanding of EBV serology tests. I believe this is the only reason why the CDC was interested in it, and the only real effort they made was to prove that the Tahoe patients weren't suffering from chronic epstein barr virus infection. When the CDC began studying the Tahoe outbreak, the investigators actually had no awareness of the prior outbreaks of ME (called epidemic neuromyasthenia in the US) in the US or other parts of the world, despite the fact that 30 years prior, a CDC employee had studied very similar outbreaks and had published details on them. In fact, the Holmes criteria makes absolutely no mention or reference to ME, epidemic neuromyasthenia, or any epidemic illness whatsoever. The conflation of this CFS entity with ME was achieved later, by people like Stephen Straus and Simon Wessely. And it was not done so scientifically but politically.

Now, the name may be perfect, but the concept itself is fatally flawed. Literally by definition, CFS is not a disease. The creators of it happily admit this:

The chronic fatigue syndrome is currently an operational concept designed for research purposes that physicians must recognize not necessarily as a single disease but as a syndrome—a complex of potentially related symptoms that tend to occur together—that may have several causes.

Contrast this with the current situation where, at some point, everyone started treating CFS as a distinct disease, and even the IOM bestowed upon it the status of 'disease'. With the benefit of history now, we can see that as a research concept, CFS has been a failure. 2+ decades of research using CFS criteria produced nothing tangible, just a pile of unreplicated or contradictory research findings. This is what happens when you ignore actual patients and throw a bunch of sick people into an invented category and believe neat little subgroups will magically fall out of it.

Compare this to the creation of ME, which was a direct response to outbreaks of the disease, and the name and description of which was produced directly by the clinicians that witnessed the patients first hand. There was real epidemiology done on ME, and the results are suggestive of a distinct cause.

There are several overlapping arguments going on here. One comes from the viewpoint that ME and CFS are the same thing, and so the argument just comes down to the name. This completely misses the point.

If you remove the (unconfirmed) assumption that ME and CFS are the same thing, then the argument becomes that of criteria. The "name issue" is solved. You call ME ME, and you call CFS CFS. The only problem left in this case is which disease are people actually studying? To which disease do you assign the various research findings? Can you say that findings found in ICC ME patients automatically apply to Fukuda CFS patients, when not all Fukuda patients meet the ICC criteria? Is that really scientific?

This issue of criteria is truly important. It has real consequences. It's hard to believe that the IOM just glossed right over this, but by creating a criteria (SEID) that requires PEM, they have left behind the ~20-50% of CFS patients that meet Holmes/Fukuda criteria but don't have PEM. How do they justify this?

 

[dean]

hi weyland

CFS ME or whatever you want to call it is not a disease.....it’s a conglomeration of symptoms put into one bucket that we call a syndrome... You are right about one thing.... deciding what goes in the bucket is political. That’s how medical nosology works...... That’s where we are now.... it compares favorably to a bunch of blind men trying to describe an elephant,

I personally have an irregularly periodic illness that is manifested by extreme fatigue and generalized pain that causes me to be totally debilitated. It appears suddenly without warning or association. It lasts variably hours, days, weeks, months or even years and then leaves just as suddenly. Then, hours, days, weeks, months or years later, just as suddenly, it returns..... For 30 years the cycle has repeated itself.

Some people tell me they have the same symptoms as me. Others have few less of my symptoms, others a few more. Some have told me with certainty that I have ME, others are sure it is CFS and others have told me it is god knows what depending on what part of the elephant they are looking at.

I have been worked up at a number university medical centers without any positive findings. I am grateful that no one still tries to tell me they know I have a psychological disease. That is progress.

I know the medical literature as well as anyone and I am certain that we are still blind men trying to describe the elephant.

We do have a lot more scientists working on these descriptions. That is a good thing and more progress. And there is one other thing I am certain of after 30 years, the one who gets the whole elephant described first by describing the disease process and its causal chain, gets a Nobel prize.

 

[Paw]

Weyland, thanks for the historical summary. Quite interesting. If I understand your thrust, you're saying there seems to be current excitement in the field about one important, particular manifestation of CFS that we might describe as ME. If so, my hope (and expectation) is that breakthroughs in understanding ME will at least partly prove helpful to other branches of CFS. (I.e., we may find that there are many paths to Rome, with Rome being common key biological changes in the body that cause our day-to-day symptoms.)

For me, I haven't ruled out, say, the possibility of viral paths -- it's just that they seem less likely than other paths. Still, I easily meet all of the CFS criteria. But my diagnosis is FM, so that informs the pathways that I focus on most.

Dean, you proved our points: I, too, rely on daily hot baths -- loaded with Epsom salt. Ha.