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Problems with International Consensus Criteria

Ember

Senior Member
Messages
2,115
It is not surprising that the CCC and ICC as clinical *diagnostic* definitions, rather than *research* case definitions, pick up more co-morbidity. The purpose of the CCC and ICC is to diagnose and treat these patients, as opposed to limiting them in a research cohort.
Unlike the CCC, the ICC is both a clinical and a research definition.

From the abstract: “Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other healthcare providers, improve the consistency of diagnoses in adult and paediatric patients internationally and facilitate clearer identification of patients for research studies.”

From the conclusions: “The compulsory critical criteria allow comparable data to be collected in various locations and may assist in developing consistent biomarkers and further insights into the mechanism and aetiology of myalgic encephalomyelitis.”

Note that the International Consensus Panel is balanced between clinicians and researchers.
 

Valentijn

Senior Member
Messages
15,786
The Jason study used the Structured Clinical Interview for DSM-IV (SCID). Have you ever had a look at that, Val? I've not looked at it yet.
Yes, it's horrible. It's extremely subjective, and if the psychologist doesn't believe ME symptoms are caused by a biological disease, then symptoms of it can be attributed to psychological causes. In the case of ME research they should give physical/cognitive symptoms the benefit of the doubt, but because the SCID is so open-ended (unlike a questionnaire with specific questions and scoring) you never have a way to know how they are interpreting physical/cognitive symptoms - they simply can't include that sort of detail for each patient in the published paper.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
One of the issues we may be running into is the CFS (not ME) diagnosis by exclusion. This is cropping up in discussions regarding DSM-V. When it comes out (this month?) most with CFS or ME will be diagnosable with a psychiatric disorder ... by definition. The same symptoms used to define much of ME and CFS can define somatic symptom disorder or whatever its called. ...
This is why cross-diagnosis for somatization should concern us.

Hi Alex,

Does this include patients who have abnormal diagnostic tests and not just symptoms to report?

For example, I think either the ICC or CCC (maybe both? bad memory) include autonomic dysfunction (e.g. types of Orthostatic Intolerance such as POTS, NMH) as a criteria. But whether dysautonomia is considered part of the illness criteria or is seen as a co-morbid condition if a patient has objective test results showing these abnormalities then shouldn't that prevent the patient from being diagnosed with somatization disorder?

The same question also applies for any other confirmed lab tests and/or surgical diagnosis. I've seen many other conditions posted here by patients, everything from endometriosis to thyroid disorders to arrhythmias. Can a patient really be diagnosed with somatization disorder when they have a diagnosis (perhaps several!) that has been made by an MD using accepted lab tests and definitions? How does that even work?

NOTE-- I am not trying to diminish the illness of patients who are very sick but, for whatever reason, do not have any diagnostic tests that explain their symptoms! Personally, I think it's horrible science for someone to think, "If you can't measure it then it does not exist." (e.g., pain, nausea, dizziness) I also think it's incredibly cruel to disbelieve the patient's report of pain/nausea/etc. Talk about kicking someone while they are down.

In summary, I'm trying to figure out how this somatization diagnosis works and how it will affect different types of patients.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Alex,

Does this include patients who have abnormal diagnostic tests and not just symptoms to report?

In summary, I'm trying to figure out how this somatization diagnosis works and how it will affect different types of patients.

Does this mean patients with abnormal objective tests can't be diagnosed with somatization? NO. You then get hit with comorbidity claims if a doc wants to push it. Thats the danger of this new diagnostic criteria, one which has been discussed at length on PR and elsewhere. It basically means that even healthy people can now be diagnosed with a psychiatric disorder.

The other issue is that they will argue that such abnormalities are to be dismissed once you consider a somatization etiology. They have been arguing that since 1970 or so. Somatization is about a psychiatric disorder that it is claimed can cause physical problems, though in various places and at various times this has been argued differently.

Basically though they get around the physical disorder issue, even when physically verifiable with a recognized disorder, based purely on symptomology. NO physical diagnosis prevents a diagnosis of SSD, somatic symptom disorder. This is a bad diagnostic criteria, with great potential for public harm. This is not science as we know it.

What concerns me is the comment earlier by someone that since CFS is a diagnosis of exclusion, and ME is often not recognized or regarded as equivalent, SSD could then be used as a justification to remove the CFS (and presumably an ME) diagnosis entirely.

All ME patients and even I think CFS patients should have a host of objective physical abnormalities, though typically of unknown significance or from hard to get tests. I don't think this will matter.

DSM-V needs to be opposed. Unless the psychiatrists using the SSD diagnosis use it carefully, or reject it entirely, we can forsee problems. I hope they never manifest, but given what is happening in the UK I expect to see issues there and elsewhere.

I never thought we could stop DSM-V or get it changed pre-publication. However we are now in a position to show how much it is failing patients in real world application. We need to take note, protest loudly, and protest often should its massive potential for failure become reality.
 

Valentijn

Senior Member
Messages
15,786
Does this include patients who have abnormal diagnostic tests and not just symptoms to report?
Yes. They will claim that the psychological disorder (somatization, fear of exercise, etc) causes the change in behavior which results in a change in biological function. They have to ignore a lot of basic medical science to reach these conclusions, but they don't seem to have a problem with that.

For example, deconditioning and PEM look nothing alike in an objective max VO2 test or reported subjective symptoms, yet they will claim PEM is really just deconditioning resulting from fear of exercise resulting from our perception that exertion is harming us. Both the CCC and ICC (I think) contain a useful chart showing the differences, but the psychosomatic crowd is very good at cherry-picking their sources.

The same question also applies for any other confirmed lab tests and/or surgical diagnosis. I've seen many other conditions posted here by patients, everything from endometriosis to thyroid disorders to arrhythmias. Can a patient really be diagnosed with somatization disorder when they have a diagnosis (perhaps several!) that has been made by an MD using accepted lab tests and definitions? How does that even work?
Yes, they can both have a "real" disease and be diagnosed as psychosomatic. All they need is for the reported symptoms to exceed (in scope OR intensity) what would be expected for a patient with that "real" disease.
 

Shell

Senior Member
Messages
477
Location
England
I can't understand how there needs to be no science at all behind a dx like somatisation disorder and yet there's a huge amount of bio-research in ME showing that this is a serious physical illness and it can all be ignored for political expediency.
And then I still don't understand the reason - right back when the CDC sent Laural and Hardy to Incline Village - that there was such a definate refusal to find out what the hell was happening.
I am sick of being this ill; taking bucket loads of meds and STILL there are no proper treatment plans.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I am still investigating prior activity by the APA and diagnostic and validation failure. I hope to be writing more on this in the future. Essentially the problem is the APA designs the DSM by consensus. If a bunch agree, it becomes reality. It then typically goes through limited validation and field checks, which are typically not released for peer consideration, and then it gets published. Its actually much more complicated than that, and I have a lot of reading to do, but thats it in a nutshell. The APA is an unaccountable and non-transparent organization. To bring it to account we only have its financial viability - a mass boycott will send a message. However that is very unlikely.

The problems with the APA I take as a signpost to what is going wrong with psychosomatic medicine in the UK. There are inappropriate or nonexistent checks and balances. Its the function of government to establish such balances, but so far the medical profession has been unaccountable. These problems are systemic, worldwide, and entrenched.
 

Valentijn

Senior Member
Messages
15,786
Here's a copy of a post I made on another thread about a paper where the SCID was used.
Valentijn said:
Also anxiety and depression were diagnosed using an interview with the DSM-IV as a guide - so no specific questions, just the researcher using their highly subjective skills and opinions. Also, the DSM-IV criterion for depression are pretty stupid if you ignore that there is a physical illness. For example, you can deny feeling depressed, but inability to read, watch TV, or socialize are specifically mentioned as indicating depression, as well as insomnia, hypersomnia, mild or severe cognitive problems, feeling weak, and being totally drained after minimal physical activity. Underlying medical conditions can rule out symptoms being attributed to depression, but only if there's proof of the medical condition.

[A diagnosis of] Major Depression with Atypical Features allows for normal mood responses to positive events.

Regarding anxiety, the symptoms in a panic attack are quite similar to POTS or other OI problems, aside from fear of going insane and impending death (well, after the first one anyhow, when we realize we fall over or sit down and life goes on). But as long as it's unexpected, has a fast onset, is not in response to a "real" threat, and you have to change your behavior to avoid the symptoms, then it's a panic attack. Again, only proven medical conditions can provide for an exception to a Panic Disorder diagnosis. Managing to go out with a companion or taking measures to avoid making a scene in public due to an attack also fit in nicely with the definition.

And they could have easily excluded most ME patients from PACE using the somatoform disorder diagnostic guidelines. Physical symptoms + no proof of cause + impact on life = somatoform disorder.
This is the reason I won't trust the results of a questionnaire until I've read every question myself, and evaluated it in the context of ME/CFS :p
 

Nielk

Senior Member
Messages
6,970
What about the 1 identifiable symptom unique to ME/CFS of PEM or PENE. Can't it be argued that this symptom does not hold true for Somatoform disorders?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
What about the 1 identifiable symptom unique to ME/CFS of PEM or PENE. Can't it be argued that this symptom does not hold true for Somatoform disorders?

I don't think they recognize it as a symptom. Its not provable, ergo it doesn't exist ... and they seem quite able to ignore the published exercise physiology which says yes, there is a problem. No amount of ANY symptom, finding or physical disease exempts one from SSD. All they have to argue is the response to the illness is more than one would expect. Given how little most docs understand about ME, this would be just about everything. Furthermore I am yet to be convinved MS does not have some form of PENE ... though it might be different.

The irony that they deny ME and CFS symptoms/physiology on the basis nothing can be proved (while severely limiting or denying access to useful tests and ignoring the growing body of research), and at the same time believe in unproven psych disorders, seems to illude them. Its hypocrisy.

Exercise physiology testing, mitochondrial, metabolic and hormone (including cytokines) testing is how we slowly spread the message of the physiological nature of the illness in the absence of a biomarker or a successful trial of Rituximab. More doctors speaking out against unsubstantiated hypotheses ... and yes I include somatization here ... would help. However for at least half a century since it was clearly pointed out that somatization etc. is irrational, most doctors (not all) haven't said boo. This is a problem for the entire medical profession, not just aspects of psychiatry.
 

Valentijn

Senior Member
Messages
15,786
What about the 1 identifiable symptom unique to ME/CFS of PEM or PENE. Can't it be argued that this symptom does not hold true for Somatoform disorders?
They simplify PEM and equate it to the normal after-effects of exercising deconditioned muscles. They might be doing this as a result of 1) mixed cohorts, 2) not listening to patients, and/or 3) being duplicitous bastards.
Is there anything that we, as patients, can do to fight this?
In dealing with your doctors and any other therapists, it can be helpful to know the differences between PEM and a normal response to exertion. The CCC and ICC have little charts with this info and citations to the research on it (and lots of names of reputable doctors), which can be shown to them.
 

Valentijn

Senior Member
Messages
15,786
Here's the PEM versus normal chart from the CCC overview:
CCC-PEM.jpg


And PEM versus normal chart from the ICC primer:
ICC-PEM1.jpg

ICC-PEM2.jpg


For more details, the published research is cited in the linked documents.
 

Ember

Senior Member
Messages
2,115
Is there anything that we, as patients, can do to fight this?
Invest in ME is doing its part in promoting the International Consensus Primer. Attached to the IiME International ME Awareness Month bulletin is a leaflet containing this information:
M.E. -
What it’s not...
Attention Seeking
Behavioural Disorder
Depression
Exercise Avoidance
Faulty Illness Beliefs
Psychological Disorder
School Phobia
Yuppie Flu
Tired all the time

M.E. -
What it is...
M.E. is a severely debilitating neurological illness.

It has distinct: onset; symptoms; causes; responses; and, long and short term prognoses. M.E. is an acquired illness with multi system involvement which is characterized by post encephalitic damage to the brain, brain stem and the Central Nervous System (CNS). This is why “myelitis” is so important in the name.

Reaction to physical and mental activity and sensory input is unique to M.E. Over-exertion can make M.E. worse and the effects are often delayed and may not be seen within 24 hours.

Symptoms can range from mild to severe to life-threatening and can include:

Cardiac and Cardiovascular Problems
Cognitive Dysfunction
Gastro-intestinal Problems
Headaches
Hormonal Imbalance
Immunological Problems
Muscle Weakness and Intense Pain
Neurological Problems
Sleep Problems
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
Please forgive my ignorance, but is it even possible to test for inflammation of the CNS? I thought that was only possible after death.
Mark,

Increased pressure detected during a spinal tap can indicate inflammation among other things. Unidientified bright objects UBOs on MRI of the brain can also indicate inflammation.

ME/CFS patients have reported both increased CSF pressure & UBOs.

"Neurological Abnormalities" in the International Consensus Primer for ME (pg.5) cites both.
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
Having trouble absorbing this, even though I started this. I guess we would have to read Jason's study to answer some of these questions. But from what we see now, is he saying that ICC is catching a subset.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Having trouble absorbing this, even though I started this. I guess we would have to read Jason's study to answer some of these questions. But from what we see now, is he saying that ICC is catching a subset.

Jason has published an enormous amount of work, and I think it might be necessary to read some of it to find out where he is coming from. This particular paper is quite a small exploratory study, and all he seems to be saying is that ICC patients have a higher incidence of comorbid psychiatric issues than Fukuda patients. He doesn't state which psychiatric issues, as far as I understand, and he doesn't discuss why it is an issue, and he doesn't discuss neurological issues. And he doesn't come to any other conclusions about the ICC. It's simply a case of reporting the facts, in terms of his findings, using the SCID (As far as I understand it, the SCID is a very long and comprehensive questionnaire that thoroughly investigates a large variety of psychiatric possibilities).

Jason says that he has read the comments after Cort's article, so hopefully they have given him some food for thought, in terms of the relationship between neurological problems and psychiatric symptoms.

I haven't read a great deal of Jason's work in detail, so I really don't understand why he considers psychiatric comorbidity to be a problem, if indeed he does consider it a problem.

I think it is helpful to investigate to see if the ICC can distinguish between primary ME and primary psychiatric disorders. Perhaps that is what Jason's intention is. He's simply doing thorough exploratory research, in terms of understanding how the ICC works in practise.

It always seemed obvious to me (an assumption) that PENE would distinguish between ME and psychiatric disorders, and that severe neurological symptoms can have a similarity to some psychiatric symptoms, and that neurological issues can cause psychiatric symptoms. So Jason's study came as a surprise to me. But perhaps it's not all as obvious as I thought it was, and perhaps I haven't thought it through properly.

It can only be helpful to explore these issues, as long as it is done properly and thoroughly. The ICC needs to be thoroughly explored and validated if it is to be widely used. Jason does an excellent job of investigating diagnostic criteria, and seems to be widely respected.

There are reasons as to why many researchers might consider comorbidity a problem.
It can complicate research, for a start. And secondary psychiatric disorders need to be distinguished from primary psychiatric disorders.

Anyway, I think that Jason is a top quality researcher, and this is simply part of his rigorous research.

Many people have a problem with Fukuda because it isn't able to fully exclude psychiatric patients. Jason has published work, previously, that has highlighted this problem.
Jason (or perhaps it was someone else - my memory fails me) has demonstrated that Fukuda isn't able to distinguish between CFS and primary major depression. So, obviously, that is a problem.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Cort Johnson fails to represent the Jason study's findings accurately. Jason's group found a higher rate of psychiatric *co-morbidity* using the CCC and ICC. For Johnson to say these are "psychiatric patients" is being deliberately misleading.

Which is why we have to read the original paper, abstracts and reviews don't cut it all too often. Then we can make up our own minds.

The issue with the comments was the use of somatization, iirc, or am I misremembering (its too close to my bedtime for me to go back and check)? Psychiatric comorbidity can include anxiety and depression. Many of us probably get either of those ... our lives often suck and we have to focus on every little thing in order to function, which might lead to anxiety. These are consequences of ME though, not a cause.

So comorbit depression and anxiety mean almost nothing in the big picture, though hard on patients, but any claim to somatization needs to be questioned. Does Lenny say anything about psychogenic illness in the paper, does anyone know?
 
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