Reflections on the Institute of Medicine's systemic exertion intolerance disease

[jimells]

Reflections on the Institute of Medicine's systemic exertion intolerance disease.
Jason LA, Sunnquist M, Brown A, McManimen S, Furst J.

Abstract
The Institute of Medicine (IOM) in the United States has recently proposed that the term systemic exertion intolerance disease (SEID) replace chronic fatigue syndrome. In addition, the IOM proposed a new case definition for SEID, which includes substantial reductions or impairments in the ability to engage in pre‑illness activities, unrefreshing sleep, postexertional malaise, and either cognitive impairment or orthostatic intolerance.

Unfortunately, these recommendations for a name change were not vetted with patient and professional audiences, and the new criteria were not evaluated with data sets of patients and controls.

A recent poll suggests that the majority of patients reject this new name. In addition, studies have found that prevalence rates will dramatically increase with the new criteria, particularly due to the ambiguity revolving around exclusionary illnesses. Findings suggest that the new criteria select more patients who have less impairment and fewer symptoms than several other criteria. The implications of these findings are discussed in the current review.

I'm constantly amazed at the number of studies from Dr Jason's team. He has over 300 hits on Pubmed. I haven't read the paper yet; I expect there will be some good stuff to discuss in there.

 

[jimells]

Rather than 4 symptoms required by the Fukuda et al. CFS criteria, the ME/CFS criteria [Canadian Consensus Criteria] required 7 symptoms, whereas the ME‑ICC criteria required 8 symptoms. Unfortunately, with the increase of symptoms from 4 to 7 or 8, criteria could identify individuals with higher rates of psychiatric comorbidity.

I have seen this before, and I still don't understand what the problem is. Perhaps the higher rates of comorbidity are more accurate. How is that a problem?

Maybe I'm just being dense, in which case I look forward to reading an explanation...

 

[Valentijn]

I have seen this before, and I still don't understand what the problem is. Perhaps the higher rates of comorbidity are more accurate. How is that a problem?

The theory is that if someone has too many "unexplained" symptoms, they actually have a psychosomatic or other psychiatric disorder.

 

[alex3619]

The theory is that if someone has too many "unexplained" symptoms, they actually have a psychosomatic or other psychiatric disorder.

It might, instead of implying an issue with the SEID criteria, reflect a problem with psych criteria.

 

[jimells]

The theory is that if someone has too many "unexplained" symptoms, they actually have a psychosomatic or other psychiatric disorder.

This must be based on this study, which is referenced by Jason et al:

Chronic fatigue syndrome criteria. A critique of the requirement for multiple physical complaints.

Katon W1, Russo J.

OBJECTIVE:

The purpose of this study was to test the hypothesis that the patients with chronic fatigue who have the highest number of medically unexplained physical symptoms over their lifetime would also have the highest prevalence of current and lifetime affective and anxiety disorders, lifetime affective symptoms, and the most functional disability.
CONCLUSION:
The patients with the highest numbers of medically unexplained physical symptoms had extraordinarily high rates of current and lifetime psychiatric disorders. These data suggest that the current case definition for chronic fatigue syndrome inadvertently selects for patients with the highest prevalence of lifetime psychiatric diagnoses. A recommendation based on these results is to modify the case criteria for chronic fatigue syndrome to include patients with fatigue and few physical symptoms and to identify and consider excluding patients with high numbers of physical complaints.

http://www.ncbi.nlm.nih.gov/pubmed?...nic fatigue syndrome criteria[Title/Abstract]

But this conclusion is pure B.S. First of all, the symptoms are not "medically explained" - they are symptoms of ME! Second, it ignores the possibility of a third factor causing both the psychiatric problems and "CFS" - something actually acknowledged by the Evil Dr Straus himself:

Second, a psychiatric problem could reflect constitutional features that would render individuals more susceptible to prolonged recovery from acute infection. Thus, it might be valuable to document psychiatric history as a risk factor for chronic fatigue syndrome

http://archinte.jamanetwork.com/article.aspx?articleid=616488

And third, this is a clear attempt to redefine "CFS" (and therefore ME) as "chronic fatigue". The idea of excluding physical symptoms in order to weed out psychiatric symptoms from an alleged psychosomatic disorder is just completely bizarre and illogical.

Reading the abstract again, I finally see that they mix "chronic fatigue syndrome" and "chronic fatigue" in such a way that we actually have no idea who or what they studied.

So why is Jason et al citing this psuedo research?

 

[jimells]

However, we now for the first time present data on the percent of controls who were identified as having SEID in several samples. In the DePaul sample, 18% of undergraduates met the SEID criteria, whereas in the BioBank sample, only 4% of controls met the SEID criteria. Comparable findings were also found for those diagnosed with the general Fukuda et al. criteria, but not the other more restrictive criteria.

BioBank control participants were required to be in good physical and mental health...

...the DePaul control sample did not preclude students with health conditions from enrolling in the sample.

These seem like amazing numbers to me. I wonder why they are published (and buried) in the middle of a review article. If the SEID criteria finds a fifth of college students to have our illness, doesn't that make it rather useless?

 

[alex3619]

These seem like amazing numbers to me. I wonder why they are published (and buried) in the middle of a review article. If the SEID criteria finds a fifth of college students to have our illness, doesn't that make it rather useless?

Nearly one in five college students have PEM? NO. Tickbox criteria have to have been used, unless this figure is incorrect. This does point out how misuse of SEID, which I have written about before, could lead to misdiagnosis. However if we had some good way of identifying PEM I think the pecentages would drop dramatically, down to well under 1%.

The Katon article concludes:

These data suggest that the current case definition for chronic fatigue syndrome inadvertently selects for patients with the highest prevalence of lifetime psychiatric diagnoses. A recommendation based on these results is to modify the case criteria for chronic fatigue syndrome to include patients with fatigue and few physical symptoms and to identify and consider excluding patients with high numbers of physical complaints.

This, to me, is a red flag of just how badly psychiatric criteria over-diagnose patients. According to at least one critic, and I have yet to see sold numbers here, nearly everyone in the population can be diagnosed with one or more psych disorders. There was a study some decades back, I think maybe in New York, where fit healthy adult males had a very high psych diagnosis rate using the criteria back then. (DSM II?). Those criteria were mostly much stricter than they are now.

Its also the case that its hard to justify symptoms being used in the criteria of multiple disorders simultaneously. No wonder many psych get their diagnoses so stuffed up so often. Of course they will claim co-morbidity.

However when a diagnostic clash occurs, you not only have to consider that the disease in question is wrong diagnosed, or is a co-morbidity, but that the benchmark you are using is flawed.

 

[jimells]

For example, 47% of a sample of individuals with melancholic depression met the SEID criteria.

Dr Jason doesn't think much about the new name, either:

The committee has come up with a name without vetting it. And they will basically get a tremendous amount of discontent and dissatisfaction right from the starting point, because the patients want something very different.”

And to prove his point the article includes comments emailed to Dr Jason:

“This new name is an abomination!”

“Absolutely outrageous and intolerable!”

“I find it highly offensive and misleading.”

“It is pathetic, degrading and demeaning.”

“It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.

Overall it's a very interesting report. It even touches the edges of the politics around the IOM report and the name change issue. It will be interesting to see how the research and advocacy communities respond to it.

 

[jimells]

Nearly one in five college students have PEM? NO.

I agree that can't possibly be the case. It's too bad the article doesn't address this directly. This seems to be unpublished data, or maybe I'm just not able to find the correct reference.

I hope @ljason comes across this thread and has a chance to discuss the article with us.

 

[alkt]

just a random thought do institutions want a name change so the rest of the world do not ever see the entire picture . in relation to how many people have been wrongly diagnosed . or treated with shocking levels of contempt by all the parties involved in denying that m.e was a known disease that has deliberately been swept under the carpet. by cdc and the insurance lobby. with the help of a lazy press.

 

[alex3619]

When we finally find the cause/s then we will most likely get a name change anyway. I thought SEID was premature, as was the IOM report. OR a name change might follow a diagnostic biomarker. One of the good things about SEID is that it uses "disease" rather than "syndrome". However the term ME does not label it a syndrome either. ME would have been a better term, but I think it would be immensely difficult to sell to health officials. SEID does partially bypass a lot of the nasty politics around ME, but not fully.

 

[alex3619]

I wonder if we should be labeling many so-called comorbid disorders as co-diagnoses, or even co-labels, rather than comorbidity. A diagnostic category is just a label.

 

[Snookum96]

Interesting info...I'm finding however that I don't even have the energy anymore to point out how incorrect some stuff is. Seems the crap never ends. Kudos to those of you who have been correcting the misinformation for years and continue to do it.

 

[panckage]

Perhaps the higher rates of co morbidity are more accurate. How is that a problem?

Ideally a set of diagnostic criteria will uniquely identify a disease. Having criteria that has a high rate of co-morbidity with another disease fails to meaningful distinguish between the two.

Eg. Cancer and tobacco have a high comorbidity. But does smoking cause cancer? Or does cancer cause smoking? Dumb example I know, but you get the point

 

[alex3619]

@panckage, I have always used a weak association between obesity and tooth decay. Which causes the other? Sometimes a third possibility never occurs to people.

 

[jimells]

just a random thought do institutions want a name change so the rest of the world do not ever see the entire picture

Basically, yes. All the apparent activity around criteria and names is intended to be a giant distraction from the fact that NIH has been captured by the insurance industry. The flurry of activity that resulted in the IOM and P2P fiascoes came right after Bob Miller managed to prod Obama into making a statement about our illness.

There is enough rampant well-documented criminality throughout HHS to sink a ship, yet nobody even loses their job, never mind goes to prison or even, heaven forbid, actually change the policies. Jeannette Burmeister has many posts on her website that document FOIA violations (including perjury) and FACA violations (laws for the CFSAC). The Justice Department, the HHS Inspector General, none of these agencies are interested. So obviously the fix is in.

The Romans kept control with bread and circuses. But all we get now is the circus. If we want bread, well, that's what dumpsters are for.

 

[jimells]

Ideally a set of diagnostic criteria will uniquely identify a disease. Having criteria that has a high rate of co-morbidity with another disease fails to meaningful distinguish between the two.

While pondering a reply I realized that maybe I misunderstand the term "comorbid". Imagine my surprise to learn that it is another amorphous medical term with multiple contradictory meanings:

In medicine, the term "comorbid" can be either medical condition(s) existing simultaneously but independently with another condition; or it can indicate a related medical condition or conditions.

In psychiatric diagnoses it has been argued in part that this "'use of imprecise language may lead to correspondingly imprecise thinking', [and] this usage of the term 'comorbidity' should probably be avoided."

As @alex3619 discussed, "co-diagnoses" is probably more neutral with less hidden meaning than "comorbid".

In any event, disease criteria still need to include patients that have multiple illnesses. If I have heart disease and diabetes, I need to have both identified and treated, whether both are caused by "metabolic syndrome", or if the heart disease is caused by smoking tobacco and the diabetes is inherited.

To my mind, an ME criteria that includes many patients with psychiatric illness is only a problem if the patients don't actually have ME. Certainly, researchers may want to exclude psychiatric patients, but that is quite different from excluding patients from diagnosis and treatment in the clinic. And the SEID criteria is being sold specifically as a clinical definition, so far.

One interesting aspect of studying this research is that no paper can be analyzed in isolation from the authors, their sponsoring institutions, their past work, and the overall political history of the illness. As a professional cynic and troublemaker, this comes naturally.

But I can well imagine that folks who believe in the ideals of the scientific method and scientific objectivity might have difficulties analyzing research with such a jaundiced eye - a bit of cognitive dissonance, I should think. So I wonder how much research is accepted at face value because the alternative of acknowledging gross incompetence and fraud is just too awful - who wants to admit they were lied to and couldn't see through it?

As for "Evidence Based Medicine" - how do those methods account for political bias while evaluating research quality and applicability? It's a sure bet the issue is never acknowledged to exist - because proponents would also have to acknowledge that the methodology itself can be twisted to suit political goals.

 

[Dolphin]

This is an open access paper:
http://www.pamw.pl/sites/default/files/inv_9_Jason ONLINE.pdf

 

[Dolphin]

To my mind, an ME criteria that includes many patients with psychiatric illness is only a problem if the patients don't actually have ME. Certainly, researchers may want to exclude psychiatric patients, but that is quite different from excluding patients from diagnosis and treatment in the clinic. And the SEID criteria is being sold specifically as a clinical definition, so far.

Yes, it's important to point out that clinical and research criteria can be different.

I quite like the SEID criteria but as research criteria they would likely need exclusions (although I don't think the intention was ever that everyone who satisfied the criteria would be called SEID patients no matter what other diagnoses they might fit).

 

[Dolphin]

just a random thought do institutions want a name change so the rest of the world do not ever see the entire picture.

I'd say lots of people with prejudiced views would be quite happy for "chronic fatigue syndrome" to remain the main name. It doesn't suggest that serious an illness. And lots of people (perhaps esp. doctors) get fatigued but don't complain about it.