POLL OPEN! Terminology, Definitions, and Criteria

[Valentijn]

I'm happy to be shown I am wrong if someone can point me to genuine evidence that shows a clear physiological distinction.

It comes down to different symptoms. CFS either excludes PEM or has it as merely optional. ME requires PEM to be part of the disease. PEM is testable and proven via 2-day CPET.

 

[Mij]

I think it also comes down to how long you've been sick. Intially I was diagnosed with Post Viral Fatigue Syndrome, then a few years down the road I had CFS (I didn't have debilitating PEM, just a feeling of odd muscle reaction to exercise) and eventually atypical ME with PEM. It's a downward spiral and eventually all systems are affected for me.

 

[alex3619]

http://mecfs.stanford.edu/2014SymposiumVideo.html

Video 4

EEG/LORETA Studies Suggest Cortical Pathology in ME/CFS
Marcie Zinn, PhD, Mark Zinn, MM

If these researchers can replicate their findings, and it can be independently validated, then the name they half joking suggest might be appropriate: Limbic Encephalitis. Even muscle pain etc., and the full range of our cognitive deficits, match the qEEG findings. This includes:

Memory, attention issues, problems with executive function, emotional lability, delayed reactions, muscle weakness, ataxia, pain, hypersensitivity to stimuli and language deficits.

Regular EEG is not very useful, qEEG is required.Computational analysis takes five minutes. Cost is about $10,000 though.

 

[Cheesus]

It comes down to different symptoms. CFS either excludes PEM or has it as merely optional. ME requires PEM to be part of the disease. PEM is testable and proven via 2-day CPET.

If you can have CFS and PEM, then PEM still fails to be a distinguishing factor between CFS and ME. What's the difference between 'I have CFS with PEM' and 'I have ME'?

Mij's post then points out how she had PVFS, then CFS, then atypical ME. I too didn't have any PEM at first, then I fit the CCC criteria, and now I have fallen out of the criteria and probably fit the 'atypical' category too.

I don't see that there is a different core physiological dysfunction here, only a condition that fluctuates and changes. The labels people apply seem somewhat arbitrary. It is still CFS/ME in my mind.

I appreciate that some people have a lot more symptoms and a lot great physical disability than others. I am long on disability but short on symptom diversity. I probably do not have some of the dysfunctions that those with pain, cognitive difficulties and frequent colds/flu have, but the ability for my body to produce a sustainable source of energy is worse than many people who do have those symptoms/dysfunctions.

I just think the immense range of symptom diversity and severity presents an image that is too complex to categorise by either CFS or ME. I stand by my prediction that this will not be the dividing line in the future, and presently it is not a coherent framework for categorising the illness(es).

 

[Cheesus]

@alex3619

I am interested in your signature.

I always understood 'psychosomatic' to mean that the cause is within the psyche, but the effect is physiological. So at a stretch we could even say for some people heart disease is psychosomatic, because aggressive personalities tend to be more prone to heart disease.

Your signature, however, paints a picture of 'psychosomatic' as a term used to describe an imaginary illness. I'm not surprised people are so resistant to that!

Is this a common confusion with the term 'psychosomatic', or have I gotten it wrong from the outset?

 

[TigerLilea]

I'm curious to know what the difference is betwen CFS and ME? I have heard people say it is severity, but given that ME fluctuates this has never really convinced me as it would suggest someone can change from having one condition to the other.

I personally think that ME and CFS are the same illness.

 

[alex3619]

@alex3619

I am interested in your signature.

I always understood 'psychosomatic' to mean that the cause is within the psyche, but the effect is physiological. So at a stretch we could even say for some people heart disease is psychosomatic, because aggressive personalities tend to be more prone to heart disease.

Your signature, however, paints a picture of 'psychosomatic' as a term used to describe an imaginary illness. I'm not surprised people are so resistant to that!

Is this a common confusion with the term 'psychosomatic', or have I gotten it wrong from the outset?

This probably isn't the thread for it, but the issue is that there are multiple meanings of psychosomatic. Originally the idea was, in the nineteenth century, to examine how the mind and body interact in disease. It was a research question.

Charcot then formalized the definition of hysteria. Lots of patients were hysterics. He previously thought they had some undiagnosed physical problem. Then he thought the mind imitated the problem, and created a fake disease state. Medical historians have gone back and discovered most of these patients probably had epilepsy. That is what a doctor today would conclude, and would run the appropriate tests.

Freud was a student of Charcot. He got some of his ideas from Charcot. Freud was big on emotional issues causing disease, and invented something called conversion disorder. In this emotions manifest as symptoms.

Now modern practitioners along these lines either continue with these ideas, and claim emotions cause symptoms, or they change it to fit with CBT, in which thoughts cause symptoms.

The problem is the Freudian ideas took off, and became formal diagnoses. Rather than asking how the mind and body interact, they told you: emotional problems cause disease. Now we have a proliferation of such diagnoses.

Not one of these diagnoses has ever been proven right in the research. Not one is validated except in the technical sense, which for something DSM means it has diagnostic consistency. Ten psychiatrists using the definition should find the same diagnosis on the same patients, at least in theory.

They keep claiming diseases are psychosomatic. Things like tuberculosis, diabetes (types 1 and 2), lupus, gastric ulcers, rheumatoid arthritis, MS, breast cancer, all cancers, heart disease etc. Were any of these psychosomatic? NO. The possibility of type A behaviour and the heart has been disproved, for example. So have many other associations including with cancer.

Any disease not understood must be psychosomatic according to this reasoning. At an individual level, this amounts to diagnosis conversion disorder, somatization etc. if the technical requirements are met and a doctor cannot run tests to diagnose the patient ... and negative findings on conventional tests are the norm for ME.

In the 80s, for DSM-IV I think, or was it -III?, they tried to make PMS a mental disorder!

I have no issue with the brain and the body interacting in disease. I have no issue with thoughts altering brain function. I have a big issue with the idea that thoughts can cause major physiological changes in very precise ways in many disorders, including ME. Not one psychosomatic illness claim has ever been proved. They have been disproved many many times.

Names are important to these people. They keep relabeling the diagnoses. Currently the fad is for functional neurological disorders, which is code for neurologists that someone is crazy, and yet if they took the term literally it means something is functionally not right with the nervous system despite a lack of anatomical issues. The literal view is probably accurate in many cases, it is in ME, but the overlay in meaning on top of that is irrational.

Chronic fatigue syndrome has been branded by these people as psychiatric. What many patients do not realize is they had already branded ME as psychiatric, and still do this. This originally happened with neurasthenia, which was considered a neurological disorder, and became rebranded as a psychiatric disorder.

No matter how many times they have been proved wrong, these ideas persist. Its religion, not science.

 

[Valentijn]

If you can have CFS and PEM, then PEM still fails to be a distinguishing factor between CFS and ME. What's the difference between 'I have CFS with PEM' and 'I have ME'?

Under CFS definitions, someone can have pretty much anything and have it labeled as "CFS" by the doctor. Depression, MS, cancer, etc, often get misdiagnosed in this manner. PEM offers a somewhat unique symptom which distinguishes ME from other disease.

CFS could be ME, but it could also be dozens of other things. ME is probably a disease, due to that one distinctive symptoms + several others, whereas as the vagueness of the CFS definitions means it really is more of a wastebasket. CFS lacks any particularly distinctive symptoms, as defined by the Oxford or CDC criteria.

 

[Mij]

@Cheesus people with atypical MS that are less symptomatic than MS can be more disabled and less functional as time goes on as well.


With MS they have something called CIS (clinically isolated syndrome) where they may or may not develope into MS- "In addition, early treatment may minimize future disability caused by further inflammation and damage to nerve cells which are sometimes silent (occurring even if no symptoms can be observed"

http://www.nationalmssociety.org/Symptoms-Diagnosis/Clinically-Isolated-Syndrome-(CIS)

 

[Cheesus]

@alex3619 That was really interesting. Thanks for that.

So the real issue with the notion of psychosomatic illness is that it can cause such specific and widespread conditions (e.g. as in ME), whereas in principal there is no issue with the brain/mind affecting the body in a more generalised and non-specific way?

The reason I ask this is because I suffered from a terrible anxiety disorder and I often saw a number of very odd phsyical symptons that disappeared with treatment of my anxiety disorder. For me it is not necessarily a linear thing going from mind to body, rather there is a constant diaglogue between the two with feedback loops and so on.

Your explanation has helped me to see how the entirely valid research question of how mind and body interact has been essentially hijacked to cover ignorance. Is that an accurate conclusion?

@Valentijn Okay, I can appreciate that CFS is a wastebasket diagnosis in that sense. Once we are certain of no missed diagnoses, however, would it be fair to say that the distinction between the terms is somewhat moot? It seems that the rejection of 'CFS' would be to reject an altogether non-existent diagnosis, rather than a differential diagnosis. I guess this is the same view as on the hfme.org site. What they call ME is what I typically call CFS/ME, simply because that is what it is known as by the vast majority of patients who do not really dig as deeply as the people on this forum.

Am I making sense?

 

[Cheesus]

@Cheesus people with atypical MS that are less symptomatic than MS can be more disabled and less functional as time goes on as well.


With MS they have something called CIS (clinically isolated syndrome) where they may or may not develope into MS- "In addition, early treatment may minimize future disability caused by further inflammation and damage to nerve cells which are sometimes silent (occurring even if no symptoms can be observed"

http://www.nationalmssociety.org/Symptoms-Diagnosis/Clinically-Isolated-Syndrome-(CIS)

That is very interesting. Thank you, mij. Learning about other, similar illnesses sheds light on how ours is categorised. A useful insight.

ETA: CIS seems perhaps to echo a diagnosis of PVFS.

 

[alex3619]

@alex3619 Your explanation has helped me to see how the entirely valid research question of how mind and body interact has been essentially hijacked to cover ignorance. Is that an accurate conclusion?

Am I making sense?

That is it in a nutshell. Though I would characterize anxiety as a brain disorder, a whole other debate. Symptoms can be created by all sorts of stuff going on in the brain, and currently its possible many or most of our symptoms with ME are brain related. Its physical though, the brain is a physical organ just like any other.

Whether ME is neurological is another story. There are definitely neurological components. Neuroimmunological is a stronger claim I think.

 

[Valentijn]

Once we are certain of no missed diagnoses, however, would it be fair to say that the distinction between the terms is somewhat moot? It seems that the rejection of 'CFS' would be to reject an altogether non-existent diagnosis, rather than a differential diagnosis. I guess this is the same view as on the hfme.org site. What they call ME is what I typically call CFS/ME, simply because that is what it is known as by the vast majority of patients who do not really dig as deeply as the people on this forum.

There's pretty much never certainty that there isn't a missed diagnosis. One reason is the limitation of diagnostic abilities and knowledge of medicine - that is, it's unlikely that we are currently able to detect or diagnose every disease process. The technology and knowledge are constantly evolving, and it's very very unlikely that modern medicine already knows everything that there is to know.

Another, more practical reason that we can't rule out missed diagnoses is because the testing done currently for potential ME patients usually ranges between "none at all" and "rule out basic things that can kill you in under 6 months". I never had an MRI after becoming ill, for example, even though ME and MS have a lot in common. Basically the investigations conducted are almost never sufficient to rule out even the relatively likely alternative diagnoses.

Hence CFS is primarily a combination of a few very common symptoms + a lack of other diagnosis. It could be ME, or nearly anything else. It is almost entirely a diagnosis of exclusion, but ironically where little has been excluded. ME definitions (ICC and CCC) focus much more on distinct symptoms, rather than the absence of there being an alternative diagnosis.

PEM is so important because it leaves the realm of normal and common symptoms (fatigue, pain, sleep disturbance, cognitive dysfunction) and describes something which most non-ME patients can't even understand particularly well, much less have ever experienced. That makes it a sensible candidate to build the definition of the disease around, until more is known about the actual pathology.

All of that said, I think everyone here knows that CFS and ME are often used interchangeably. It's especially common in the US, where there is literally no official acknowledgement of the name "Myalgic Encephalomyelitis". And because "ME" and "CFS" are often intended to describe the same disease by those who write some of the definitions, and manuals, and research papers, we certainly can't say they are entirely separate entities.

However, we can say that we have a certain symptom which is only specifically required by definitions which use the "ME" terminology. We can say that we don't fulfill the requirements of a "CFS" definition where fatigue must be the primary symptom. Hence ME and CFS look rather distinct when looking at the various criteria used to diagnose them. And in that sense the distinction becomes very important, because an Oxford CFS study explicitly excludes patients like me, because we are not "fatigued" but rather disabled by PEM and OI. Such research and its conclusions are inapplicable to ME patients, and that's something we have to remember and point out repeatedly every time another clueless specialist recommends a bit of exercise to cure us.

 

[Scarecrow]

Under CFS definitions, someone can have pretty much anything and have it labeled as "CFS" by the doctor. Depression, MS, cancer, etc, often get misdiagnosed in this manner. PEM offers a somewhat unique symptom which distinguishes ME from other disease.

CFS could be ME, but it could also be dozens of other things. ME is probably a disease, due to that one distinctive symptoms + several others, whereas as the vagueness of the CFS definitions means it really is more of a wastebasket. CFS lacks any particularly distinctive symptoms, as defined by the Oxford or CDC criteria.

I thoroughly agree but this post from Mij is also crucial for me:

I think it also comes down to how long you've been sick. Intially I was diagnosed with Post Viral Fatigue Syndrome, then a few years down the road I had CFS (I didn't have debilitating PEM, just a feeling of odd muscle reaction to exercise) and eventually atypical ME with PEM. It's a downward spiral and eventually all systems are affected for me.

It highlights the gradual versus sudden onset debate as much as PEM versus no PEM.

The more I think about it and read about the experience of other people, the more I wonder how common genuine sudden onset is. At one time, if asked the question, I would have said my M.E. was sudden onset even though I knew I wasn't 'right' before then. It's only in retrospect that I've been able to join up the dots from IBS to gradual worsening to what seemed like falling off a cliff, it was that sudden.

So on the one hand, CFS - as defined by CDC or Oxford - really could be "a dozen other things".

Or it's a point on a continuum which includes what we understand to be ME, for those who like to make a distinction.

Until we understand the nature of that continuum we do not know enough to consider renaming one or the other. We only have an awareness that we may not all be the same.

 

[Dr.Patient]

First of all you can not lump CFS and ME together, and secondly ME already has a decent name until we know more about it. As far as I know the IOM is going to lump CFS and ME together and that will not get any acceptance among the ME community anyway. They can feel free to name the CFS group thou, they deserve a better name.

@taniaaust1 - I had asked this question before, who are these "CFS" people that "ME" people want to differentiate themselves from?

 

[Dr.Patient]

I no longer meet the criteria so I guess I don't have ME anymore. Woopdedoo I'm cured!! Oh wait... I still am unable to leave the house. Damn.

I think you have a point, though. Not fulfilling the criteria doesn't mean you don't have the same dysfunction as others. The fact is that two people could fulfil this criteria and have almost a completely different set of symptoms whilst only sharing post exertional malaise. Conversely, I could have all the same symptoms as someone who does fill the criteria bar perhaps one thing, yet going by this I would have a different illness.

I think the criteria is a useful guide, but it is only a guide. Distinguishing between CFS and ME is useless when a person could fluctuate between the two, as that would mean they are constantly fluctuating from one chronic illness to a completely different chronic illness. In my opinion there are just varying severities of a similar central dysfunction (and a number of different patterns and subsequent dysfunctions that spiral out of that).

@Cheesus Agree with your post. The ICC does give allowances for typical vs atypical; subgroups based on predominant symptoms; and severity- mild, mod, severe, very severe, etc. I don't see why some people think they have a "different" illness. All they have to do is see where they fit.

There is a reason ICC came up with PENE, criteria A, because this is the symptom shared by all. They looked at about 2500 patients, and I think the ICC nailed the criteria!

 

[Dr.Patient]

I think it also comes down to how long you've been sick. Intially I was diagnosed with Post Viral Fatigue Syndrome, then a few years down the road I had CFS (I didn't have debilitating PEM, just a feeling of odd muscle reaction to exercise) and eventually atypical ME with PEM. It's a downward spiral and eventually all systems are affected for me.

I completely agree with @Mij here in that PVFS and ME are a continuum of the same illness. That is hard to believe for people who had full blown ME from day 1 of a virus, but people who had a gradual onset can understand this. I had PVFS myself in 2011 for 8 months, now ME for the last 2 years.

 

[taniaaust1]

@taniaaust1 - I had asked this question before, who are these "CFS" people that "ME" people want to differentiate themselves from?

Easy question.. CFS people=
1/ those who have been wrongly diagnosed and may have treatable illnesses but lazy doctors have thrown into the "waste basket" diagnoses
2/ those people who arent metting any ME diagnostic criteria (so may have a completely different "undiscovered" new illness at this point
3/ may have ME diagnosis just not diagnosable at this point.

Ones who may have something completely different shouldnt be lumped in with all the others, that doesnt happen with other illnesses so why should it be happening in ME. ME shouldnt be a dumping ground, its not fair on ME people and its not fair on these other people either who usually need far more investigation.

 

[taniaaust1]

I personally think that ME and CFS are the same illness.

Studies have shown that many who have CFS have been wrongly diagnosed and have another illness, this is happening in a fairly large number of CFS diagnoses hence CFS people do not always have ME.

 

[SOC]

@taniaaust1 - I had asked this question before, who are these "CFS" people that "ME" people want to differentiate themselves from?

And you got an answer. Did you not like that answer? Are you looking for an answer you like better?

The simplest, if not exactly accurate (What is in the ME/CFS world at this point?) way to look at it is this:
If you meet the ICC, you have ME.
If you meet the CCC, but not the ICC, you probably have ME, but might have CFS.
If you meet the Fukuda, CDC definitions, or the Oxford Definition, but neither the CCC or the ICC, it is likely that you have an illness different from ME, but either misdiagnosed or as yet unknown so you're stuck with the CFS wastebasket diagnosis.

This is NOT absolute. There are lots of grey areas.