Australia: MindFood: Misdiagnosing ME

[In Vitro Infidelium]

. The NICE Guidelines define CFS. The ICC and the CCC are both ME definitions.

CFS = illness of unknown aetilogy
ICC = illness of unknown aetilogy
CCC = illness of unknown aetilogy

how therefore is it possible to exclude the possibility of aetiological overlap (either total or partial) beween cases defined by the competing criteria ? Quite simply it is not possible, there is no gross symptom in any of case definitions or criteria sets, from Ramsay to the ICC (and everything in between), the absence or presence of which has any reasonable probability of being a distinguishing factor in the aetiologies of the illnesses decribed by those case definitions and criteria sets.

I fear what afflicts this discussion is a bad case of nominal fallacy, - the sense we all tend have that once something has been given a name, we know what it is and the named thing is somehow different to everthying else that has a name. Many named things are of course different from each other but in most case naming doesn't tell us how things are different, or tell us how similar they are. The challenge for research into M.E/CFS/M.E is not how to re-arrange the allocation of gross symptoms so as to identify the single ideal research subject, but to find out what is going on in the bodies of a broadly selected range of patients.

IVI

 

[Firestormm]

Too often in science we operate under the principle that "to name it is to tame it", or so we think. One of the easiest mistakes, even among working scientists, is to believe that labeling something has somehow or another added to an explanation or understanding of it.

Worse than that we use it all the time when we are teaching, leading students to believe that a phenomenon that is named is a phenomenon that is known, and that to know the name is to know the phenomenon.

It's what I, and others, have called the nominal fallacy. In biology especially, we have labels for everything — from molecules to anatomical parts, to physiological functions, to organisms, to ideas or hypotheses.

The nominal fallacy is the error of believing that the label carries explanatory information...

Guilty. Or at least I think the label myalgic encephalomyelitis should describe the condition. I think too that it is more to do with the fact that WHO have ME under neurology than perhaps the label and what it actually means.

If CFS were in neurology I wonder if we'd have any such concerns - apart from not liking it as a name. Anyway, thanks for that I shall remember it: nominal fallacy. Hmm...

 

[In Vitro Infidelium]

I think too that it is more to do with the fact that WHO have ME under neurology than perhaps the label and what it actually means.

Yes that's exactly the kind of problem I was thinking of - the name is attached to a (pressumed) quality which then becomes the basis of argument as fact. But the WHO categorisation has no diagnostic force, it is just a system of disease catagorisation, a bureaucratic process not a clinical one. Using the WHO categorisation as a tool of advocacy is fine, such as when faced with entrenched psychiatric positions, but we should never make the mistake of believing our own propaganda. We can just as easily become (in a philosophical sense) a prisoner of the names Myalgic Encephalomyelitis, or Myalgic Encephalomyopathy or CFIDS, as we can (in the thinking of others) the name Chronic Fatigue Syndrome.

IVI

 

[Valentijn]

Regardless of etiology, there are different definitions that are used, containing different symptoms. My symptoms match certain definitions very well, but have little in common with other definitions. Based on studies that have been done, I know that only about half of the people included in some of those studies have a disease that involves the same symptoms which I experience.

The names may be quite meaningless in and of themselves, but they are used to indicate very different groups of patients. Studying cancer and MS patients as a single group, under the umbrella of any shared symptom, is not going to provide any useful information about either condition, but rather a useless mishmash of contradictory data that might conclude that, on average, the members of the combined group have no abnormalities.

But this is what happens when grouping patients with very different symptoms, and it happens constantly with ME patients. No one is proposing that the name "Myalgic Encephalomyelitis" is proven or even accurate, but it is the only practical alternative we have to distinguish patients with our symptoms from patients with simple chronic fatigue.

 

[Ember]

Can you please tell me how the ICCME will operate alongside CCC ME/CFS or does it aim to replace it?

The authors see the ICC as an advancement over the CCC:

The 2011 ICC for ME continues the direction of refinement undertaken in the Canadian Consensus Criteria and incorporates more recent knowledge and understanding. More specifically, the rationale of the ICC document advances the successful strategy of the Canadian Consensus Criteria of not viewing symptoms isolated in a nominal list, but rather as coordinated patterns of symptoms that directly reflect the regulatory interactions of the underlying systems involved. If the same symptoms consistently flare in response to exertion, they are more likely to share a common cause.

They aim to advance the science by allowing “a selection of more homogeneous sets of ME patients:”

The ICC identify patients who have measurable and reproducible pathophysiological abnormalities in response to exertion, which people with general fatigue or depression do not have. In contrast, the Reeves and Oxford criteria do not require postexertional malaise or exhaustion in their definitions, and it is optional in the Fukuda criteria. The more general and stereotypic the criteria, the less useful they become because lumping together patients whose chronic fatigue is an integral part of many other diseases skews both clinical and research findings. It is prudent to study patients who have various kinds of adverse pathophysiological reactions to exertion to isolate various pathogeneses responsible for them and determine appropriate treatments. The use of patient sets selected by relevant, well-defined and consistent ICC for ME in research will thus advance science, provide greater clarity of understanding and elicit more reproducible scientific results. This will also allow a selection of more homogeneous sets of ME patients, given the current knowledge, which can then be compared with other populations. Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full).

 

[In Vitro Infidelium]

Studying cancer and MS patients as a single group, under the umbrella of any shared symptom, is not going to provide any useful information about either condition, but rather a useless mishmash of contradictory data that might conclude that, on average, the members of the combined group have no abnormalities.

It is only 'useless' (or more accurately redundant) to study cancer patients and MS patients as a single cohort, because the science now exists to be able to demonstrate wholly separate aetiologies. However go back 150 years, take a cohort of patients who randomly happen to be suffering from (what we now know is) leukemia induced weakness, and from (what we now know is) MS induced weakness and as science progresseses someone will eventually discover that sources of weakness fall into two sets of aetiologies. One can not arrive at such a position prior to the science being undertaken.

Of course one might argue that there are gross symptoms of leukemia and MS that would allow basic seperation of the two diseases without biochemical, surgical study or post mortem study - but the biochemical, surgical and post mortem studies would not be confounded by looking at a mixed cohort of leukemia and MS sufferers. If there are abnomalities to be found, so long as the sophistication of technique exists, discoveries will be made. It's not as though the process of investigation involves taking blood from 20 patients, pouring all the boods into one receptical, testing it, and then dividing the results by 20.

IVI

 

[Ember]

You see I don't think NICE Guidelines are 'CFS'. How can they be, when you are saying they encapsulate people who really meet the 'ME' criteria and have something distinct?

Hasn't CFS always been an umbrella definition, obscuring ME? That's why the ICC recommends that ME patients “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”

CCC as a personal preference went further than what we had and appears to better reflect what ought to be considered by way of criteria. But even this (ME Criteria according to you) has not had the impact patients would like to have seen.

How could the CCC have had more impact when the UK and US establishments have both chosen to obscure ME? Dividing and conquering patients has been like child's play for them. Patients can't manage to speak with one voice, saying that we're different from one another.

We do have opportunities though. Cort reports that the latest Program Announcement for the NIH has for the first time left the definition open. We could be advocating for CCC and ICC cohorts to be included in all research. The Coalition4ME/CFS is committed to “advocate for the adoption of the Canadian Consensus Document.”

But for now, advocates remain badly confused. On the one hand, they claim, “It is long past time to subset Fukuda-defined patients and actively consider the existing 2003 Canadian Consensus Criteria (CCC) or 2011 International Consensus Criteria (ICC) for those patients who suffer from the hallmark post-exertional malaise.” But on the other hand, they argue, “Many experienced clinicians and researchers recognize the equivalency or close similarity of ME and CFS based on the growth in scientific understanding....” Based supposedly on the ICC, they argue further, “When properly defined, CFS is the same as ME.”

Whatever does “when properly defined” mean? The lead ICC author himself writes, “While it has always been essential, it has now also become urgent to segregate the subset that we are calling ME more clearly, using the ME International Consensus Criteria.” Advocates need to read the case definitions and stop compounding the confusion that they decry.

In the article that you posted, Dr. Bassett points out, “CFS and ME are not the same thing; the names are not synonymous.... 'It’s not just about names. It’s about definitions being wrongly mixed up and misused.'”

 

[taniaaust1]

Are the various reported 'triggers' also potential subsets do you think? Mine was a definite viral trigger, others are other things, perhaps we could use triggers as subsets and study then too... Sorry. I'm still not convinced not now.

Id like to point out one subset which is caused by a certain trigger has already been separated.. That being Gulf War Syndrome. They get the same symptoms as us and lucky for them.. their subgroup also gets to be studied separately.

Another subgroup I'd think would be the vaccine group.. those who got ME/CFS after a vaccine. (maybe it is exactly the same illness as the infectious group if it was something caught from the vaccine.. but it probably would be best to subgroup well so they can more easily work this whole illness out... maybe different parts of us are damaged according to the trigger which ends up leading to the same result?).

They should give that subgroup a different name. They should give all the subgroups different names to make sure they are studied separately just like the GWS group is. If it turns out they are all the physiologically the same.. well only then should they call them all the same name

Tania did you happen to see the video of the last CFSAC from June? Their last meeting. They're kind of looking to reinvent the wheel and come up with a revised/new/agreed clinical and research definition and we talking about a name change. It's a long video but not too bad if you do it in bits. Don't know what will come of it myself and I'm not sure they aren't trying to achieve something beyond reach at the present time but it's generally positive I suppose.

http://forums.phoenixrising.me/inde...12-meeting-video-available.18740/#post-285927

Edit:

I see that you have seen the video Tania:http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-2

I didnt get to see the video (I only have a dial up connection) but I read the transcript or followed peoples comments on what was going on while the meeting was taking place. Im against reinventing that wheel again.. is been reinvented too many times now already so I dont think any one takes new reinventions seriously any more. I wish they'd just stick with the canadian consensus definition if they arent going to start seriously subgrouping

 

[Valentijn]

Id like to point out one subset which is caused by a certain trigger has already been separated.. That being Gulf War Syndrome.

There's also Post-Viral Fatigue Syndrome and Post-Q-Fever Fatigue Syndrome.