ME - Syndrome or Disease?

[alex3619]

Cancer is a collection of syndromes and diseases. As we discover specific causes and detailed mechanisms, individual diseases are defined within this huge pot of similar syndromes. For example, breast cancer is slowly being unravelled - there are many types of breast cancer. Each of those is a disease. Breast cancer is a syndrome.

There is not much question that people with ME have a disease, the question is whether or not its the same disease in all cases. It might be. It might also be that most with CFS have the same disease. Or that even ME is twenty different diseases. As heapsreal suggested, calling it an illness is a better way around this debate I think - but we shouldn't pretend we know for sure ME is one single disease entity.

CFS on the other hand is only ever going to be a syndrome. ME might be finally shown to be a single disease entity, CFS cannot be - its too heterogenous.

In my view most syndromes are one or more diseases waiting to be properly classified, though a few will be disproved entirely. Diseases remain syndromes due to lack of funding and interest.

Bye, Alex

 

[adreno]

Well put, Alex.

 

[svetoslav80]

My understanding is that syndrome is a disease with an unknown cause or mechanism, or both. So I think diseases like AIDS and Down syndrome are only called syndromes for historical purposes. Their cause and mechanism were once unknown and they were syndromes, but they should be called diseases now. In this sense I don't agree with Alex that CFS will always be a syndrome. They may find the cause and mechanism, and it will come out as one or several diseases.

 

[Mark]

By the way, here's an about.com article about the disease versus syndrome thing: What's the Difference Between a Disease and a Syndrome?

From that article:

Disease: a morbid entity characterized usually by at least two of these criteria:
Recognized etiologic agent (cause)
Identifiable group of signs and symptoms
Consistent anatomic alterations

On top of not knowing the causes of FMS and ME/CFS, signs and symptoms are too variable and often point to numerous possible causes, and researchers have failed to find anatomic alterations that are consistent enough to stand up to scientific scrutiny.

It's important to remember that while the term "syndrome" sometimes seems to belittle the illness, it's really just a classification based on what the medical establishment understands about it. When someone throws out that "it's just a syndrome" argument, they should take a close look at what they're really saying. It doesn't mean that your illness is less real or serious than a disease; it means it's less understood.

In other words, ME/CFS succeeds or fails at fitting the criteria of a 'disease' based on whether you consider it to have an 'identifiable group of signs and symptoms' and 'consistent anatomic alterations'.

If one were to use the CCC, or the ICC, together with good research on NK cell function or a range of other 'anatomic alterations', it surely would not be difficult to define at least one 'disease' in the group of ME/CFS patients. The variation of symptoms between subgroups, and the variation of the 'anotomic alterations' or biomarkers, is likely a question of clustering those subtypes appropriately. The big question really is whether there are two or more completely separate diseases within the syndrome we are describing, or whether they are more properly seen as subtypes of the same disease - and to some extent that is always going to be a slightly artificial question of where you choose to draw various lines and make your definitions.

So it doesn't seem unreasonable to me to argue that there is definitely at the very least one disease within ME/CFS, and possibly a group of diseases, even though there is not yet a consensus on the definition and demarcation of this disease or group of diseases.

The article goes on:

Something that may compound the confusion about the difference between disease and syndrome is that a name containing syndrome may stick even after the illness becomes classified as a disease, especially in popular usage. Case in point: AIDS acquired immune deficiency syndrome. Scientists figured out what causes it years ago, yet the name persists.

So when someone says to you, "Oh, that's just a syndrome," maybe you can remind them that's what the S in AIDS stands for. Then you can add, "AIDS became classified as a disease once scientists figured it out so it's just a matter of time before FMS and ME/CFS are diseases, too."

I quite agree with that: In short, AIDS is a disease, although its name as a 'syndrome' persists to this day. And ME/CFS also describes a disease or group of diseases which have not yet been classified. Depending on which scientific viewpoint you support, ME, or ME/CFS, may or may not be sufficiently well-defined to classify as a 'disease' in terms of current scientific knowledge.

But I would personally tend to say that the important point is that both ME patients and CFS patients have what will eventually be shown to be a disease, even if they don't all have the same disease. As an individual, I have reasonably well-defined and consistent symptoms, and tests to confirm the associated 'anatomic alterations', so I think I can say with confidence that, according to the definition above, I have a disease that has not yet been properly named and classified.

 

[nanonug]

I would personally tend to say that the important point is that both ME patients and CFS patients have [..] a disease

I have no doubt that we all have a disease. What I very much doubt is that we all have the same disease, even if all the different individual diseases cause the symptoms under the ME umbrella.

 

[adreno]

The distinction between syndrome and disease is not dependent upon whether the etiology is known or unknown. An example of a disease with unknown etiology is Alzheimers disease. In the case of AIDS, it is termed a syndrome, because different diseases are involved in the pathology.

 

[SOC]

I quite agree with that: In short, AIDS is a disease, although its name as a 'syndrome' persists to this day. And ME/CFS also describes a disease or group of diseases which have not yet been classified. Depending on which scientific viewpoint you support, ME, or ME/CFS, may or may not be sufficiently well-defined to classify as a 'disease' in terms of current scientific knowledge.

I think using AIDS as a comparison might be more confusing than helpful at this point. HIV infection is clearly a disease. However, it is not considered AIDS until the patient with HIV develops a somewhat arbitrarily defined set of symptoms. It's the "and now you're really sick" point. So in that sense, HIV is the disease, AIDS is a syndrome in the progression of HIV infection.

Language is a tricky thing, especially when one starts mixing common language with technical language. "Fatigue", "malaise", "chronic" and "syndrome" have different connotations depending on context. That's one reason why the choice of Chronic Fatigue Syndrome is so malignant. While the words may have nontrivial meaning in a strictly medical parlance, the common meanings trivialize the illness. "Just a syndrome" is a common parlance idea. Medically speaking, a syndrome can be very serious.

I suspect we are confusing ourselves somewhat by mixing common connotation and medical connotation.
Medical definition of "syndrome" http://medical-dictionary.thefreedictionary.com/syndrome

syndrome /syndrome/ (sindr?m) a set of symptoms occurring together; the sum of signs of any morbid state; a symptom complex. See also entries under disease.

Following this definition is a long list of syndromes, many of which are very nasty beggers.

Medical definition of disease http://medical-dictionary.thefreedictionary.com/disease

disease /disease/ (d?-z?z) any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown. See also entries under syndrome.

One can do an infinite amount of dictionary diving and find different subtleties, but the upshot is that neither medicine nor common parlance has been consistent in distinguishing disease from syndrome. So while we may feel that in common parlance "syndrome" sounds less serious than "disease", sufferers from Down Syndrome, SARS, or Acute Radiation Syndrome may beg to differ.

The thing I think most of us can agree on is that our illness has no good name. I don't even need to go into the problems with Chronic Fatigue Syndrome . Myalgic encephalomyelitis isn't all that great because we don't have concrete evidence of myelitis, or even encephalitis, although the symptomology certainly suggests it. Myalgia is diffuse and non-specific pain, which doesn't apply universally and sounds pretty pathetic relative to the pain some PWME experience. And besides, the acronym ME sucks in the internet age. Ever try to search ME? :tear:

Until we track down some cause or absolutely clear biomarkers, we aren't likely to have a good name, so worrying about whether it's a syndrome or a disease is probably low on the priority list. That said, when the day comes around that we get a real name, I vote that we call it a disease. JMO I'm still voting for WTF or WTH Disease as the best descriptive name.

 

[Ember]

When it comes to weighing the authority of a published case definition for ME against a comment in an internet article, I wouldn't be swayed by the internet article.

Disease: a morbid entity characterized usually by at least two of these criteria:
1. Recognized etiologic agent (cause)
2. Identifiable group of signs and symptoms
3. Consistent anatomic alterations

On top of not knowing the causes of FMS and ME/CFS, signs and symptoms are too variable and often point to numerous possible causes, and researchers have failed to find anatomic alterations that are consistent enough to stand up to scientific scrutiny (emphasis added).
http://chronicfatigue.about.com/od/...fference-Between-A-Disease-And-A-Syndrome.htm

Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [13] and immune system [48], dysfunction of cellular energy metabolism and ion transport [911] and cardiovascular abnormalities [1214]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology (emphasis added).
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

 

[SOC]

When it comes to weighing the authority of a published case definition for ME against a comment in an internet article, I wouldn't be swayed by the internet article.

Indeed! Adrienne, while often helpful in collecting info, is far from an expert (contrary to About.com's hyperbolic description of its contributors). Interesting? Yes. Authoritative? No.

 

[xchocoholic]

I thought those with accute onset ME, were diagnosed with encephalitis. I was and was given diamox for
several years. I couldn't bear to have anyone touch me, especially the base of my skull because it hurt so much. This was 24/7. And I still get what feels like inflamation at the base of my skull sometimes.

I had bodywide muscle spasms and pain too. A massage therapist came to my house 3 days a week but never made any progress. Just pain. I just saw what I had referred to sporadic ataxia plus on the internet. I had ataxia too.

I got hit by a bus .. Looking back, I can't believe how incompetent and insensitive the doctors I saw were.

This settled down after about 7 years but the spasms and pain would come right back if I overdid it. Now I rarely get the pain .. kow ..

Last year, 21 years later, I was told that I now have lung scarring and paget's of the skull. Sounds like an infectious process to me.

That's why I think ME and CFS need to be separated. How can we look for an infectious agent if we're not
looking at the same set of people ? Or are we really looking at multiple infectious agents that affect
people differently ? Some more than others ?

Tc .. X

 

[SOC]

That's why I think ME and CFS need to be separated. How can we look for an infectious agent if we're not
looking at the same set of people ? Or are we really looking at multiple infectious agents that affect
people differently ? Some more than others ?

You're going to have a problem with that until ME is a recognized illness in the US. Infuriatingly, if you have our illness in this country, you have CFS, like it or not. :Retro mad: There is no distinction (officially) in the US, so doctors, insurance companies, researchers all have to use CFS as the designation.

So while you might have an idea of how you distinguish ME from CFS (and not everyone is confident it's that clear), it's meaningless unless we get that official document that defines illness codes (Blast! What's it called?) modified to include ME and CFS as distinct entities.

 

[nanonug]

That's why I think ME and CFS need to be separated. How can we look for an infectious agent if we're not looking at the same set of people ? Or are we really looking at multiple infectious agents that affect people differently ? Some more than others ?

Thing is, no one knows for sure. Assigning arbitrary labels to sets of symptoms and calling them diseases does nothing to further our understanding of anything. Calling arbitrary labels a "disease" is just outright fraudulent!

 

[xchocoholic]

The term myalgic encephalimyetis (sp) means muscle pain and encephalitis. How can we use this medical term and yet not take it literraly ?

Seriously, all these years I thought everyone with cfs had the same cfs I dud until I got on the web in 2005. If I'd known they didn't I surely would not have said I had cfs.

 

[hixxy]

Disease: a morbid entity characterized usually by at least two of these criteria:
Recognized etiologic agent (cause)
Identifiable group of signs and symptoms
Consistent anatomic alterations

This means pretty much all neurodegenerative diseases are syndromes. Sigh and I believe it too.

There have been cases of remissions from MS, and they're most definitely not all through the treatment of the same cause.

 

[hixxy]

I thought those with accute onset ME, were diagnosed with encephalitis. I was and was given diamox for
several years. I couldn't bear to have anyone touch me, especially the base of my skull because it hurt so much. This was 24/7. And I still get what feels like inflamation at the base of my skull sometimes.

I had bodywide muscle spasms and pain too. A massage therapist came to my house 3 days a week but never made any progress. Just pain. I just saw what I had referred to sporadic ataxia plus on the internet. I had ataxia too.

I got hit by a bus .. Looking back, I can't believe how incompetent and insensitive the doctors I saw were.

This settled down after about 7 years but the spasms and pain would come right back if I overdid it. Now I rarely get the pain .. kow ..

Last year, 21 years later, I was told that I now have lung scarring and paget's of the skull. Sounds like an infectious process to me.

That's why I think ME and CFS need to be separated. How can we look for an infectious agent if we're not
looking at the same set of people ? Or are we really looking at multiple infectious agents that affect
people differently ? Some more than others ?

Tc .. X

You can still look for an infectious agent in this combined group of people and THEN when it's found use that to separate and group them into diseases. This can also apply to non infectious causes.

 

[nanonug]

This means pretty much all neurodegenerative diseases are syndromes. Sigh and I believe it too.
There have been cases of remissions from MS, and they're most definitely not all through the treatment of the same cause.

This lady cured herself of MS by eating the right kind of foods: TEDxIowaCity - Dr. Terry Wahls - Minding Your Mitochondria

 

[hixxy]

This lady cured herself of MS by eating the right kind of foods: TEDxIowaCity - Dr. Terry Wahls - Minding Your Mitochondria

Indeed, while others have achieved it through faecal transplant.

 

[SOC]

The term myalgic encephalimyetis (sp) means muscle pain and encephalitis. How can we use this medical term and yet not take it literraly ?

Seriously, all these years I thought everyone with cfs had the same cfs I dud until I got on the web in 2005. If I'd known they didn't I surely would not have said I had cfs.

Actually, the myelitis part refers to the spinal cord so it's more than encephalitis. While I agree that our symptoms suggest encephalitis and encephalomyelitis, we don't yet have the hard scientific evidence that convinces the medical world that it actually exists, so they are not eager to make official an "unproven" use of those terms in the name. I think your question, "How can we use this medical term and yet not take it literraly ?", exactly exemplifies their concern. If they name our illness myalgic encephalomyelitis, we would be justified in taking it literally and they're not convinced it is literally true. Aggravating, I know.

I don't think we know if we all have the same illness, whatever we call it. There's certainly a common pattern, but it's hardly enough to ensure it's all the same disease. And then, of course, there's the question of all the people diagnosed with "CFS" who have no flu-like symptoms, no neurological symptoms, no PEM/PENE. I think they definitely don't have the same illness as we do, but the CDC used such sloppy definitions that some of them are often included as part of CFS.

No argument that it's a big friggin' mess in the US (and elsewhere), but I'm not sure I can agree that we know for certain where the line is between CFS and ME, in the US anyway. No thanks to the CDC for creating such a mess and stubbornly sticking with it for so long.

 

[xchocoholic]

You can still look for an infectious agent in this combined group of people and THEN when it's found use that to separate and group them into diseases. This can also apply to non infectious causes.

Got it, I think. Are you saying people can have the same infectious agent but will get different diseases based on genes, co-existing pathogens and/or or prior damage to an organ making it more succeptible to infection ?

 

[xchocoholic]

This lady cured herself of MS by eating the right kind of foods: TEDxIowaCity - Dr. Terry Wahls - Minding Your Mitochondria

Not to be a debbie downer, because I'm a big fan of dr wahls, but do you think she may get this again ?

I had ataxia for 16 1/2 years that went away via diet too, but I get it back if I take benadryl or klonopin
and possibly if I ate a lot of gluten. I'm a celiac with the dq2 gene, so it's in my genes. I'm assuming ms is in dr wahls genes.