Problems with International Consensus Criteria

[Ember]

Is it true then that when I was depressed a year ago, I did not fit those criteria any longer and that now that I don't suffer from depression, I am back on board? It just doesn't make sense to me.

I don't think that's the case, Nielk. Co-morbid entities include depression in the CCC and secondary or reactive depression in the ICC.

 

[Ember]

And do you (or anyone else) happen to have any insight into the disparity (SCID vs SF-36) for the ICC? i.e. what is different about the SCID and the SF-36 subscales such that the SCID indicates psychiatric comorbidity, and the SF-36 subscales suggest normal-ish mental health?

One obvious difference is that the SF-36 is completed by the patient and the SCID is not. The validity of the SCID for use with CFS patients is based, as reported by Taylor and Jason (1998), on its having identified fewer patients with “current and total lifetime psychiatric diagnoses:”

Fifty percent of participants received at least one current psychiatric diagnosis on the DIS, whereas only 22% received a current psychiatric diagnosis on the SCID. Findings suggested that psychiatric comorbidity rates in individuals with CFS are influenced by the type of psychiatric instrument used. These results help explain the large discrepancies in findings for psychiatric illness in individuals with CFS across investigative studies.

A functional impairment score of 31-40 on the SCID is described as some impairment in reality testing or communication (e.g., speech is at times illogical, obscure, or irrelevant) OR "major impairment in several areas, such as work or school, family relations, judgment, thinking, or mood (e.g., depressed man avoids friends, neglects family, and is unable to work; child frequently beats up younger children, is defiant at home, and is failing at school)."

A score of 41-50 involves serious symptoms (e.g., suicidal ideation, severe obsessional rituls, frequent shoplifting OR "any serious impairment in social, occupational, or school functioning (e.g. no friends, unable to keep a job)."

 

[Ember]

Various recommendations for improving CFS definitions appear in the literature. Katon and Russo (1992) recommend using fatigue and few physical symptoms in order to exclude lifetime psychiatric diagnoses. Their recommendation, published prior to Fukuda (1994), is cited by Jason et al. (2010): “The requirement of eight of more minor symptoms could inadvertently select individuals with psychiatric problems.”

Komaroff et al. (1996) recommend eliminating three symptoms (ie., muscle weakness, arthralgias, and sleep disturbance) and adding two others (ie, anorexia and nausea). The purpose of their recommendation, published after Fukuda (1994), is to distinguish patients from healthy controls and disease comparison groups.

DeBecker, McGregor and De Meirleir (2001) recommend changing the symptom requirements to identify a more severely affected and homogeneous group. Their large study, published prior to the CCC and the ICC, is available in-full online: “The addition of patients to the CFS definition by the Fukuda criteria has resulted in the selection of less severely affected patients. This has also resulted in the introduction of an increase in patient symptom heterogeneity.”

Confounding co-morbid factors, the authors suggest, “may include mycoplasma infections which have an increased prevalence in CFS patients [10], psychiatric disease such as depression [11], or even other syndromes such as fibromyalgia [12, 13]. Thus there is a need to assess the homogeneity of a large CFS study population:”

CFS symptoms that gave the best group differentiation were the Holmes criteria defining symptoms of fatigue, swollen/tender lymph nodes, sore throat, muscle weakness, recurrent flu-like symptoms, postexertional fatigue, myalgia, memory disturbance and nonrestorative sleep. The inclusion of 10 additional symptoms: hot flushes (in place of low-grade fever), paralysis, new sensitivities to food/drugs, cold extremities, gastrointestinal symptoms, difficulties with words, exertional dyspnea, attention deficit, urinary frequency, muscle fasciculations and light headedness increased the sensitivity of the Holmes definition by 0.5% and the specificity of the definition by 6%. As with the findings of Komaroff [17] the analysis used in this study also did not find arthralia to be a significant predictive variable.

The study recommends using a severity scale and considering too “the importance of the relationship between symptoms, not simply increases in prevalence on individual symptoms:”

Virtually all the symptoms reported by the CFS population were increased in severity and prevalence compared with the CF population. This was also the case when comparing the Holmes and Fukuda groups. This could argue for incorporating a severity index of symptoms in the CFS Case definitions. This was already mentioned by Jason et al. [14] who suggested that there is a need to assess levels of symptom severity rather than just symptom occurrence alone and that future definitions of CFS may need to include specific guidelines pertaining to the importance of symptom severity in the diagnostic procedure. The establishment of symptom severity score requirements for the case definition of CFS could be a very important tool for CFS patients categorization. In this study a severity score of > 2 of the 3-point scale using the Holmes defining symptoms could be important when used to differentiate between Holmes and Fukuda criteria patients. The use of the multivariate method of analysis has demonstrated the importance of considering the relationship between symptoms and not simply increases in prevalence on individual symptoms.

Dr. De Meirleir is one of the authors of both the CCC and the ICC.

 

[Allyson]

Dr Ramsay used to talk about the emotional lability in some of his patients. I remember a story about a professional male patient who came to his office and cried. The impression I got was that the patient cried because he had a terrible disease but also that the normal restraints on emotional expression had been changed somehow. I'm probably not describing this correctly.

When I was first ill I also cried. Was much more emotional than normal and it felt part of the infection and delirium that I had when the viral symptoms were so acute and severe. As the fevers lessened so did the emotional crying. I still have a terrible disease but I'm not depressed.

Could this be extrapolated somehow into "mental illness" ? I wasn't depressed then but I certainly felt emotional different. There are no real tests for mental illness such as depression so it could be one bad instrument meeting another.

Poke someone with the flu and see how they react emotionally? There must be descriptions of viral diseases that make people feel more emotional and cry etc.

Good point X and a couple of good explanations i have heard
One at an ME ocnference from a professor of Medicine talking about OI

We react to upright posture with an extra and contimued release of adrenalinand ?cortison - to casoconstrict to hep us adapt to upright posture - well peopl do this too but we need more due to connective tissue dysfuntion

this reuslts in the emotionel reaction akin to stress - he dexcribed it in pinpoint detial - exactly what i do if I have an early morning docs appt or have to go out in in extreme heat - a meltdown

the distinguishing point is that we oly eo it when upright and lying down and or cooling the body temp will fix it in us - we can also induce it by getting up early and going out, say when we are not having one of theose few and far beteweeen good days.

the other thig i heard on tv news segment was that when the frontal cortex is deprived of blood suppply for any leght of time that produces annger as the frole off the frontal cortex is to inhibit anti social behaviours - when that is out of action all bets are off as happens in people with permantn damage tehre ; for us it is mybe due to transiten lack of bblood supply - i am extrapolating from their news report to apply it to us, but it seems palusible to me ... and explains why i have a meltdown too if i have to queue for any length of time.

cheers,
Ally

 

[Bob]

Lenny Jason seems to be doing some seriously heavy-weight work on diagnosing CFS/ME.
There is some further interesting reading in the latest edition of ME Research UK's Breakthrough magazine.
It's not available online yet, but when it is, it will be placed here. (Spring 2013 edition.)

The latest edition (spring 2013) of Breakthrough magazine is now available online:
http://www.meresearch.org.uk/information/breakthrough/index.html

See pages 4 and 5 for some interesting info about research in relation to diagnostic definitions, with the following title:
"Does diagnosis matter? Two new studies comparing criteria for ME and CFS."

 

[Dolphin]

I remember seeing some SF36 questionnaires from people with ME/CFS and quite a lot ticked yes/yes/yes for question 5: http://www.drbrantigan.com/patient/SF36tosonly.pdf on role emotional.

I think there's a good chance some had misread it. So I think there is a good chance that the proper scores in studies for "role emotional" from groups with CFS or ME/CFS or ME would be higher than what is reported.

 

[Dolphin]

I actually like the Revised ICC the best. It says "not necessarily," which allows for discretion based on whether the symptoms indicate the presence of a me/cfs plus an overlapping mental or physical disorder.

B. Not necessarily exclusionary
3. May have presence of concomitant disorders that do not adequately explain fatigue and are, therefore, not necessarily exclusionary.
i. Psychiatric diagnoses such as:
a. Anxiety disorders
b. Somatoform disorders
c. Depressive disorders
ii. Other conditions defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, such as:
a. Multiple food and/or chemical sensitivity
b. Fibromyalgia
iii. Any condition under specific treatment sufficient to alleviate all symptoms related to that condition and for which the adequacy of treatment has been documented.
iv. Any condition that was treated with definitive therapy before development of chronic symptomatic sequelae.
v. Any isolated and unexplained physical examination, laboratory or imaging test abnormality that is insufficient to strongly suggest the existence of an exclusionary condition.

I believe you mean the revised CCC.

 

[Valentijn]

I remember seeing some SF36 questionnaires from people with ME/CFS and quite a lot ticked yes/yes/yes for question 5: http://www.drbrantigan.com/patient/SF36tosonly.pdf on role emotional.

I think there's a good chance some had misread it. So I think there is a good chance that the proper scores in studies for "role emotional" from groups with CFS or ME/CFS or ME would be higher than what is reported.

It is rather odd that the almost identical question just above it for physical health has "as a result of your physical health" underlined, but there's no similar emphasis on the question for emotional health. I think it would be quite easy to miss that "physical" has been swapped with "emotional".

 

[Dolphin]

It is rather odd that the almost identical question just above it for physical health has "as a result of your physical health" underlined, but there's no similar emphasis on the question for emotional health. I think it would be quite easy to miss that "physical" has been swapped with "emotional".

Although some do have that bit underlined for emotional health, but people appeared to still misread/not read it closely enough.

 

[biophile]

Psychobabblers claim that patients supposedly misinterpret emotional symptoms for physical symptoms. But what about misinterpreting neurocognitive impairments and physical symptoms of PENE for "emotional" problems? SF-36 does not cover neurocognitive impairments very well. A patient may feel "emotionally" exhausted due to PENE, regard "physical" health as strictly related to symptoms and sensations of the body, then say "Yes" when asked:

During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?

a. Cut down the amount of time you spent on work or other activities?
b. Accomplished less than you would like?
c. Didn’t do work or other activities as carefully as usual?

And to repeat a previous point, role emotional scores were low but still higher than everything else in the SF-36.

 

[Firestormm]

Much has been said about patients supposedly misinterpreting emotional symptoms for physical symptoms, but what about misinterpreting neurocognitive impairments and physical symptoms of PENE for "emotional" problems? SF-36 does not cover neurocognitive impairments very well. A patient may feel "emotionally" exhausted due to PENE, regards "physical health" as strictly related to symptoms and sensations of the body rather than etiology, then say "Yes" when asked:

During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?

a. Cut down the amount of time you spent on work or other activities?
b. Accomplished less than you would like?
c. Didn’t do work or other activities as carefully as usual?

And to repeat a previous point, role emotional scores were low but higher than everything else.

I don't think you can be expected to separate emotion (or mood) from physical and/or the effect of depression experienced in a chronic condition like ME from some of the symptoms of ME.

I could also say the same about other chronic illnesses too - I know how much my Mum struggles with Rheumatoid Arthritis for example especially when experiencing - what we might term - a 'flare' after doing too much i.e. stepping outside of her own 'pacing' or when she knows that the grandkids are coming to stay and she will want to do 'more than is good for her'.

Be very interested to learn the proportion of people with a chronic illness who have also been prescribed anti-depressants or have received some form of treatment for depression. I imagine it to be quite high.

All we can hope is that appropriate 'filtering' occurs. At present there is a great emphasis - as we know - on bio-psycho-social in terms of treatment. For us (and other chronic conditions) the emphasis is on the psycho-social and this naturally will encompass similar forms of approach as used in treatment of depression e.g. CBT.

Whether or not the same chemical mechanisms are involved in ME as occur in depression e.g. some of the neurotransmitters; and whether or not treating them with what are commonly recognised as anti-depressants serves a purpose within the ME model as it does in the model for depression: is an ongoing debate - but one that was again touched on my the reposting of I think that Maes paper and certainly by the Drug-repurposing conference presentation by CFIDS that we posted an article about.

There are of course different forms of depression. For some of us - including me - the instances of depression are directly a result of a) being knocked out of my career and former life without adequate explanation or expected treatment; and b) periods of inescapable relapse and even on occasion inconvenient 'flares'.

Others may have had depression before their ME was triggered and diagnosed. The reason for the diagnosis may be totally different from the depression, but we do know that some have this subsequent diagnosis as a result of a psychological episode e.g. something significant and disturbing that had happened in their life going largely unresolved and even unrecognised.

There may even be a genetic predisposition towards depression. Though I never really looked too much into this. But you cannot say that depression and chronic illness do not go hand in hand.

If a doctor is being reminded to consider depression as well as other exclusionary diagnoses before a diagnosis of ME is delivered; I can't see anything wrong with that. PEM might help distinguish those with 'only' depression from those with ME but it isn't (yet) something specifically able to be tested for: and has yet to be firmly established as something that might be.

If a patient with ME (and experiencing depression) is discharged from specialist care it may always be that this discharge is a result of the fact that the symptoms associated with depression and life with a chronic illness - have been resolved or helped: and not necessarily the symptoms or disease that is ME. And I can't see anything wrong with that either.

Distinguishing between the two - and therefore measuring the effectiveness of treatments in relation solely to ME - will ever remain difficult until we establish biomarkers or better means of measurement and indeed treatment itself.

However, even if a better treatment for whatever model of ME is established through science becomes available: there will ever be a need for help in learning to cope with a life of chronic illness even if that illness becomes one of clearer remission and relapse: a protocol that occurs in for example MS.

Even then distinguishing symptoms of 'life with chronic illness' from the illness itself (not forgetting depression is a chronic illness too); will remain difficult for the doctor trying to help; and for the patient completing a questionnaire that inquires about emotion.

 

[biophile]

Firestormm.

It may be difficult to distinguish, but with contemplation and experience it should get easier. I know what it is like to subjectively experience negative mood, and I know that is distinguished from CFS symptoms. CFS may set up biologically mediated vulnerabilities to depressed mood before psychological and social factors come into play. Then of course is the possibility that it is just an unsurprising response to the suffering, reduced quality of life, isolation, stigma, struggles, etc.

Too exhausted and distracted to write much else right now on the subject, apologies.

 

[Nielk]

It looks like the DHHS is starting to work on a new criteria. Tom Kindlon twitted this:

https://www.fbo.gov/index?s=opportu...35096d2486592952c90cd3acee7&tab=core&_cview=0

Clinicians and medical professionals disagree on many aspects of ME/CFS, ranging from frank disbelief in the illness to confusion about the application of clinical diagnostic criteria. In collaboration with CFSAC ex officio agencies, OASH will request that the IOM develop consensus clinical diagnostic criteria for this disorder. A widely accepted clinical definition and a clear distinction from clinical trials and research case definitions would aid in advancing clinical care, drug development, and basic and translational research for ME/CFS. This study would also demonstrate HHS' commitment and aggressive pursuit of solutions to this poorly-understood and disabling condition.

The Committee will consider the various existing definitions for chronic fatigue syndrome and develop consensus clinical diagnostic criteria for this disorder. Widely accepted clinical diagnostic criteria and a clear distinction from case definitions for clinical trials and research will aid in advancing clinical care, drug development, and basic and translational research. The Committee will also distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation.

 

[Ember]

Why is a clear distinction needed between a clinical definition and a research case definition? The International Consensus Panel argues that “it is imperative that research for ME be carried out on patients who actually have ME.”