Comparison of Diagnostic Criteria - discussion thread

Moderator note: This thread has been split from ubiome-receives-patent-for-diagnosing-me

I don't think we can say that Fukuda is inferior to the CCC and ICC.

The ICC and CCC tend to select ME/CFS patients with more severe impairments (and also select for patients with more psychiatric comorbidities) compared to Fukuda; 1 2 but in some ways that may put the ICC and CCC at a disadvantage, in that they may miss the milder cases.

 

The problem with Fukuda is who is using it and for what end. CCC will diagnose moderate and severe ME/CFS and SEID you will capture mild and moderate ME/CFS, and ICC you will diagnose severe ME.

Fukuda in the wrong hands will give researchers the same conclusion: Subgroups that have this or don't have this. Because they either do or don't have CFS in the first place and there will be patients that should not have been in the research.

 

Just want to note that this isn't true. It's very possible to meet ICC or CCC criteria with mild ME since the threshold for activity reduction is 50 %, and for most people who were reasonably young and healthy before the illness that level means mild ME. I'd say it's even possible that it's mild ME with a activity reduction of something like 70 % or more for a person with higher than average physical fitness before the illness. ICC aren't stricter than CCC in all cases either – I've had mild ME (nowadays I consider it in partial remission), and very clearly met the ICC criteria, but since my pain symptoms have been very mild most of the time (at least when not overreaching), I haven't met the CCC criteria as clearly.

 

CCC criteria is a problem with the pain requirement. I think they made an error making it mandatory because clearly many patients do not have pain or pain all the time. I also find it problematic because they have fatigue OR PEM. Now, in the early ME criteria by Ramsay? he did not have PEM (that came with Fukuda as an OR with fatigue) and he had, I believe, a pain requirement so...I think that is why in CCC they have PAIN and FATIGUE. Too much room for a misdiagnoses in my opinion.

If you meet ICC, you're severe. I don't believe for one second you can have all those symptoms and not fit severe. Don't have every symptom on ICC all of the time? Try working full time and socializing and you will be homebound in no time. Or part time and keeping a home with children. Or if you are not working and barely socializing and keeping up a home, you're severe. What happens to many is they find a "new normal" which Dr. Bell has made clear; patients don't realize how sick they are.

Because the disease fluctuates, waxes and wanes, and can remit although clearly still being ill, there is a problem with "functioning" being used to measure severity. People end up thinking they are not severe when in fact, all they have to do is attempt to work full time and have a social life and they will be severe in a week and possibly locked into that level of non-function for life. They were, in fact, severe all along but because they were measured with ICC when they were in a remittance they themselves end up misdiagnosing their own severity level. Same with CCC and SEID. You can actually be worse but are not able to define it measuring your function during a period of remittance. I think SEID could be severe but, I think it may have more to do if you have severe POTS which is not necessarily the disease ME/CFS but instead a possible symptom. CCC can be mild but I think only when the patient is remitting; again remitting is not a true snapshot of how severe the disease is. Working full time and socializing will fix that; you will be non-functioning in no time at all.

Also, what if in CCC you have a 50% functionality but your hyperacusis and photophobia are severe? Well, trying working part time with that. Functionality should not be the only measure for severe.

However, I do believe you can be severe with CCC (I am due to lack of non-function which I am now locked into thanks to trying to work) but it would be terrifying to meet ICC.

 

Indeed. Also Fukuda is sometimes a pretense of using good criteria while effectively watering it down to 'persistent chronic fatigue', no better than good old Oxford.

I've come across this in a study by the Dutch behaviourists, and this was also mentioned as a problem in the following:

https://www.oatext.com/an-analysis-...ue-syndrome-and-myalgic-encephalomyelitis.php

footnote for table 1:

*b Fukuda criteria for CFS with “the exception of the criterion requiring 4 of 8 additional symptoms to be present”.

 

I admit I don't know which criteria are now most consensually used within serious ME research, and don't have the capacity to discuss the different criteria per se. I am rather thinking about a more pragmatical question: Given that ME advocacy often refers to the ICC or CCC, are there any plans to update the ICC and/ or the CCC in the near future?

In particular I'm wondering if the recent brain fMRI and MRI studies give rise to update both the ICC and CCC?

A while ago @JaimeS made me aware of the fact that white matter lesions are part of the CCC for ME. I'm afraid this could be misleading as long as there are no consistent findings of specific lesions in a substantial sub group.

I have no idea about the details of the recent brain MRI and fMRI studies. I think they didn't explicitly look for structural anomalies. But would the images taken in those studies also show lesions or other structural anomalies if there were any? Or did the investigators exclude study participants with structural anomalies (and if there were any, has this been recorded?)

Haven't checked the CCC, but also the ICC refer to "irreversible punctuate lesions". Also, with regards to other findings I thought some parts of the ICC's paragraph on "Neurological Impairments" may be a bit misleading?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/

Edited -- had confused ICC with CCC.

 

IMHO the biggest problem with all the criteria is they do not consider TH2 shifting. i.e. raised allergic tendency.

The problem is most of the conditions mentioned in any of the criteria can also be generated by a TH1 condition like Lyme's which IMHO is a totally different kettle of fish and likely to produce substantially different lab results from similar chronic fatigue symptoms related to TH2 shifting, thus washing out statistical analysis in any patient sample group.

For example Lyme appears to be accompanied by a TH1 shift.
https://www.ncbi.nlm.nih.gov/pubmed/9551943

CFIDS has been characterised as involving a TH2 shift.
https://www.ncbi.nlm.nih.gov/pubmed/21234277
https://www.ncbi.nlm.nih.gov/pubmed/25824300

So these are different types of CFS IMHO as one is TH1 shift and the other is TH2 shift and should be considered different subtypes of CFS and not be confused with each other.

Or to look at it another way, having established that some CFS patients exhibit TH2 shift, this evidence of TH2 shift should be used as a specific criterion to define a subgroup of CFS patients which ought then to be the basis for experimental cohorts.

Failure to define subgroups more closely is why researchers are making no progress in characterising the conditions involved in the umbrella diagnosis which CFS is.

 

A series of posts have been moved here from the Concerns about CCI thread.

Just to clarify - these are all the people you are saying are fringe and that "no reasonably intelligent well trained physicians takes them seriously"?

ICC authors

B. M. Carruthers

M. I. van de Sande

K. L. De Meirleir

N. G. Klimas

G. Broderick

T. Mitchell

D. Staines

A. C. P. Powles

N. Speight

R. Vallings

L. Bateman

B. Baumgarten‐Austrheim

D. S. Bell

N. Carlo‐Stella

J. Chia

A. Darragh

D. Jo

D. Lewis

A. R. Light

S. Marshall‐Gradisnik

I. Mena

J. A. Mikovits

K. Miwa

M. Murovska

M. L. Pall

S. Stevens

Researchers that used or referenced the ICC in their research papers

James N. Baraniuk

Narayan Shivapurkar

Jose G. Montoya,

Tyson H. Holmes,

Jill N. Anderson,

Holden T. Maecker,

Yael Rosenberg-Hasson,

Ian J. Valencia,

Lily Chu,

Jarred W. Younger,

Cristina M. Tato,

Mark M. Davis

Ekua W. Brenu

Simon Broadley

Thao Nguyen

Samantha Johnston

Sandra Ramos

C (Linda) MC van Campen

Klaas Riepma

Frans C. Visser

NOT an exhaustive list...

 

I was talking about criteria, not people. As to why these people got involved in the criteria, it is not for me to speculate, but the criteria are fringe medicine and no reasonably intelligent well trained physician can be expected to take them seriously.

 

They ended up in ICC because a group of enthusiasts persuaded each other that they were dealing with an 'inflammatory neuroimmune disorder', probably spurred on by Ramsay and Acheson's enthusiasm and enthusiasm for enteroviruses. The more the word spread around that there was neuroinflammation the more they thought they found it.

Most of the neurological symptoms that get bundled under ME are probably common local neurological problems like radiculopathy and carpal tunnel syndrome that walk into a rheumatology clinic every day of the week.

What is so striking about the ICC is that the clinicians have decided what they were looking for before they decided how to recognise it. That is why it does not look credible to a physician like myself coming in from the outside.

 

My feeling is that because the ICC were written at a time when the psychogenic "all in the mind" view of ME/CFS still dominated, the authors tried their best to counter that view by recasting ME/CFS as a disease with biological causes.

That may be why they describe PEM, for example, as a "neuroimmune" phenomenon, to emphasize its biological nature. But in fact nobody knows what causes PEM, so it's premature to describe its basis as neuroimmune. In this respect, the CCC are better, because they make no assumptions about what causes ME/CFS. However, in terms of diagnostic criteria, there's not a lot of difference between the ICC and CCC.

 

We do see PEM referenced in other disorders - including Fibromyalgia (fibro crash) as well as cancer related fatigue. See chart here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2390812/.

This confusion in the medical community when bringing up PEM is why I prefer to clarify my experience more closely matches post exertional neuro immune exhaustion. When I am in PENE, my immune system crashes and my cognition crashes. I lose the ability to process information and the immune crash is clear with all the opportunistic infections and viral outbreaks I experience. As I pull out of the crash my cognition and immune function improves. (Neither are ever "normal")

It still feels like you and I are talking about different conditions. Even the IOM report (SEID) stated that ME and CFS are two different conditions. I would love to move forward in 2020 with everyone recognizing that ME may not be what people are talking about when they say "the disease".

 

I'm still struggling to understand your position about the ICC when so many researchers are using it.

All of these studies listed below used ICC criteria for selection of participants.

What I'm hearing you say is that all of this research and researchers are fringe and should be ignored.

In addition to this list there are more than a dozen recent studies that cited ICC. The citing of the iCC indicates to me those researchers recognized the ICC as a mainstream criteria.

For full list with hyperlinks (which will continue to be updated) go to: https://www.me-international.org/published-me-icc-studies.html


Elevated blood lactate in resting conditions correlate with post-exertional malaise severity in patients with ME/CFS
Alaa Ghali, Carole Lacout, Maria Ghali, Aline Gury, Anne-Berengere Beucher, Pierre Lozac’h, Christian Lavigne & Geoffrey Urbanski

Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in ME/CFS
Maximillian J. Nelson, Jonathan D. Buckley, Rebecca L. Thomson, Daniel Clark, Richard Kwiatek, and Kade Davison

Blood Volume Status in ME/CFS Correlates With the Presence or Absence of Orthostatic Symptoms: Preliminary Results
C. (Linda) M. C. van Campen, Peter C. Rowe and Frans C. Visser

The etiologic relation between disequilibrium and orthostatic intolerance in patients with ME (CFS)
Kunihisa Miwa, MD, Kunihisa, Yukichi Inoue, MDb

Immunoadsorption to remove ß2 adrenergic receptor antibodies in CFS/ME
Scheibenbogen, Loebel, Freitag, Krueger, Bauer, Antelmann, Doehner, Scherbakov, Heidecke, Reinke, Volk, and Grabowski

Autonomic correlations with MRI are abnormal in the brainstem vasomotor centre in Chronic Fatigue Syndrome
Leighton R. Barndena,b, Richard Kwiatekc, Benjamin Croucha, Richard Burnet d, Peter Del Fante

A Preliminary Comparative Assessment of the Role of CD8+ T Cells in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Multiple Sclerosis.
Brenu, Broadley, Nguyen, Johnston, Ramos, Staines, Marshall-Gradisnik

Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study.
Nakatomi, Mizuno, Ishii Wada, Tanaka, Tazawa, Onoe, Fukuda, Kawabe, Takahashi, Kataoka, Shiomi, Yamaguti, Inaba, Kuratsune, Watanabe

 

Video posted by ME International
https://www.me-international.org/board-of-directors.html

https://www.youtube.com/watch?v=ZIvHDwz_IDg

 

Merged thread

https://www.me-international.org/blogs/myalgice-videos-understanding-diagnosis

 

I was told about the videos via these tweets!
https://twitter.com/user/status/1267752488247218176

https://twitter.com/user/status/1267753311651926016

 

Seeing more discussion lately over the very issue that has been so problematic with ME. Diseases defined not so much by symptoms but by patterns of symptoms... not exactly what medicine was built for. Especially when it requires patient engagement, another thing medicine was definitely not built for.

Just an example but seeing this same problem, unresolved for decades, still being so important is an incredible failure. At least the damn Oxford criteria may be about to face retirement. Hopefully its creators follow suit shortly, but I doubt it.

https://twitter.com/user/status/1285662769761718273

 

tldr: iom perhaps becomes more salient at certain times.

what would make pwme/clinicians think of trying it in some cases?

idk if these anecdotes are useful or worth your read.

===

i match meicc++. it and ccc feel closer to "this feels like the disease we're talking about" than other criteria i have seen.

when the iom flowchart came, i thought it could IN PRINCIPLE be useful, if itis good, such as necessary and sufficient by some measure, or correlate with a future good biomarker, ...

... BUT it would likely be overlooked by pwme and physicians in many cases because those features would not be noticed as salient among all the others in meicc, and additional features not listed in meicc.


i had iom features, but i also had others. for example, just to pick at random, reversed phase sleep. and an enormous number of others too.


so my assessment of iom was that if other pwme were like me, they might pass over the iom flowchart. it seemed POSSIBLY more germane for less severe or at least less multisystem forms of it?

or something? i wasn't sure. in any case, pwme might not think to ask their doctors about it.

although on the other hand, my milder and less multisystem childhood features, half a century ago, was prominently allergic and circadian and various other stuff. so it might STILL have overwhelmed the iom features.

so maybe it is not just multisystemness and severity that overwhelms iom. idk. depends how severe i was i guess, but i was ambulatory, forcing myself to push through it just as i was told and encouraged to like a GOODTHINK little boy.


back around y2k when doctors were not telling me what disease i had, i bought harrissons 4-inch-thick principles of internal medicine and lange's 3-inch-thick internal medicine and lange's endocrinology [immune might have been better or perhaps neuro idk neuro might still be in the stone ages wrt features like exec dys] and went through every disease in them to find out what disease or diseases i had.

i figured, idk if i have a zillion separate diseases, but let's try a bit of occam here. in my 20s or so i had gotten a new disease every few months or so that never went away.

i also scoured a top medical bookstore. i think i recall that reversed phase sleep got ONE SENTENCE in the entire bookstore, and phase delay a few sentences.

as for the tomes, i found nothing. cfs was, as you might imagine, a nothing disease whose features were something like tiredness and treatment was "reassurance", whatever that is supposed to mean. i skipped over it.

in the end, the closest match was wegener's, which goes by a different name now. and didn't seem right either. but i had a nagging feeling about the many "and other symptoms" diseases.


idk what i would have done had i hit iom flowchart in one of those books. it might have gotten dog-eared as a possibility, just as sle and other [infuriating! -->] "and other symptoms" diseases did, but it might not have stood out.


to me, iom was like, would you as an internist, say, or pwme, THINK TO TRY the flowchart among the barrage of features that many clinicians hate you for and get confused and overwhelmed by?

i have probably written more eloquently on this before. i forgot my point exactly, but it was along those lines, i.e. the supposedly "core" iom symptoms might get overlooked.


when mold injured, before the textbooks, i had noticed there was a delayed effect. but idk if i would have pegged it later as pem and don't recall the triggers, other than perhaps overdoing it in a general sense. [fwiw, i had also noticed that i'd feel run down and not know why and then notice that i had a cut. weird. is that even a thing that anybody ever experiences?] correlating pem was perhaps a bit difficult, so might have hampered conjecturing iom. i don't recall well enough atm.


what i wanted to report was that as i went from severe [bedridden except bathroom] to very severe, pem and oi and executive dysfunctiun perhaps got worse together. [although so did sleep restorative sleep being more needed.]

and those are pretty much iom features.


so although my case might not have initially seemed saliently iom-like, even at the milder levels in childhood, and still is meicc++ it seemed that iom features became more prominent.

[i don't actually clearly know atm re childhood -- i did notice stamina issues and oi and exec dys without having names for them or, due to my circumstances, feeling the social right to call them medical problems without getting persecuted or dismissed -- but again i had allergic and circadian and maybe autism-like features and other stuff that might have strongly overwhelmed iom, preventing it from being noticed.]

the fact that the iom features got noticeably worse increased iom's germaneness for me. although in principle it might have taken literally half a century and knowledge about m.e. for it to stand out enough in my case. as for assessing the quality of iom on its own merits, idk.


also, apropos of nothing maybe, once i learned what executive dysfunction is, i noticed that my entire life was profoundly ruled by it.


[edited]

 

The #CFS empirical case criteria (Reeves et al., 2005) are a weird operationalisation of the Fukuda criteria. I campaigned against them previously, including setting up this petition against them which people can still sign https://www.ipetitions.com/petition/empirical_defn_and_CFS_research