Yes vs No - respectful discussion

[SpecialK82]

I can propose a possible solution to this polarising problem.

Separate Myalgic Encephalomyelitis from Systemic Exertional Intolerance Disease. Those who qualify for an ME diagnosis as per ME-ICC retain the ME name with its WHO ICD code under neurological diseases. Those who qualify with the IOM criteria retain the SEID name with the new ICD code that will be assigned to them.

I don't understand, are you are suggesting that these two are mutually exclusive? I fit the criteria for both.

 

[SOC]

I don't understand, are you are suggesting that these two are mutually exclusive. I fit the criteria for both.

I was thinking something similar. I see a huge overlap between SEID and ICC-defined ME. I don't see how we could justify claiming them as two separate conditions. Maybe we could justify ME as a substantial subset of SEID...?

Can someone give me an example of a patient presentation that would meet ME-ICC but not SEID?

Similarly (this is probably easier), can someone list several different presentations that would meet SEID, but not ME/CFS - CCC?

 

[Nielk]

I think that most probably everyone who qualifies with a ME-ICC diagnosis will also qualify for SEID.

Not everyone who qualifies with SEID will qualify for ME-ICC.

There are some symptoms in common.

There are other similar diseases like Lyme, Fibromyalgia, GWI.

 

[SOC]

I think that most probably everyone who qualifies with a ME-ICC diagnosis will also qualify for SEID.

Not everyone who qualifies with SEID will qualify for ME-ICC.

There are some symptoms in common.

There are other similar diseases like Lyme, Fibromyalgia, GWI.

Could you be more specific? I agree there are symptom similarities among SEID, ME/CFS, Lyme, fibro, GWI, and other conditions. I don't think that's in question. I'm trying to get a handle on specific patient presentations that would meet and not meet the criteria.

 

[Nielk]

The ICC demand at least 50% reduction in premorbid activity.
pain,
immune dysfunction,
PENE - neuroimmune exhaustion,
neurocognitive dysfunction

 

[SOC]

For exams SEID does not require immune dysfunction symptoms.

I'm not trying to be difficult, but you are not answering my questions. I understand there are differences in the requirements. What I'm looking for is specific patient symptom presentations that meet one criteria but not another.

By my reading of the ICC, a patient without immune dysfunction symptoms (unless you count flu-like symptoms during PEM, which also fits a SEID diagnosis) could be diagnosed with ME if they had PEM, GI symptoms, and genitourinary symptoms.

Maybe someone else can be more specific. Can someone describe the symptom set of a patient that would meet ICC but not SEID, and another that would meet SEID but not CCC. I'm trying to figure out which patient groups fit one definition but not another.

 

[nandixon]

I was thinking something similar. I see a huge overlap between SEID and ICC-defined ME. I don't see how we could justify claiming them as two separate conditions. Maybe we could justify ME as a substantial subset of SEID...?

I was thinking about that too.

One possibility is to do subtyping similar to what's done in diseases like Diabetes (Types 1 & 2), Ehlers-Danlos Syndrome (Types 1-6), Glycogen Storage Disease (Types 1-7), and so forth.

So some language might be added to the IOM criteria (it would need to be different from this - I'm just quickly showing it for illustrative purposes):

"In addition to the above, there may be at least the following subtypes:

Type 1 - Pain prominent: Myalgia and/or flu-like symptoms may dominate. (Also known as Myalgic Enceplalomyelitis or ME.)

Type 2 - Non-pain prominent: Other symptoms such as greater fatigue and/or myasthenia may dominate."

(I would have added a Type 3 for "Autonomic prominent" if OI wasn't already mentioned in the primary criteria.)

I am somewhat surprised that at least some form of pain wasn't somehow included by the IOM criteria in one way or another.

 

[Nielk]

I was thinking about that too.

One possibility is to do subtyping similar to what's done in diseases like Diabetes (Types 1 & 2), Ehlers-Danlos Syndrome (Types 1-6), Glycogen Storage Disease (Types 1-7), and so forth.

So some language might be added to the IOM criteria (it would need to be different from this - I'm just quickly showing it for illustrative purposes):

"In addition to the above, there may be at least the following subtypes:

Type 1 - Pain prominent: Myalgia and/or flu-like symptoms may dominate. (Also known as Myalgic Enceplalomyelitis or ME.)

Type 2 - Non-pain prominent: Other symptoms such as greater fatigue and/or myasthenia may dominate."

(I would have added a Type 3 for "Autonomic prominent" if OI wasn't already mentioned in the primary criteria.)

I am somewhat surprised that at least some form of pain wasn't somehow included by the IOM criteria in one way or another.

The problem is that the ME people, the 25% group and others who believe that they have the authentic disease from Dr. Ramsey believe that they suffer from the authentic disease discovered many decades ago. They feel that CFS is a construct by the CDC to make ME disappear. They feel that the SEID criteria is a further effort to bury the true ME, with it's history dating back to Dr. Ramsey and all the different outbreaks worldwide.

They certainly don't think that they are a subset of SEID.

My attempt was to make everybody happy. Let the ME people have their historical ME and let the people who are happy with the SEID criteria, have SEID.

It's a scientific difference as well as a political one.

 

[halcyon]

On a lower level, this study found 7 different subtypes based on gene expression, SF-36 score, clinical phenotype, and severity.

 

[SOC]

I am somewhat surprised that at least some form of pain wasn't somehow included by the IOM criteria in one way or another.

Me, too. I wonder if the difficulty is that in well-managed patients, myalgia may be controlled by pacing and other treatments. So patient surveys may not show consistent or persistent pain even though pain has been a feature of that patient's overall experience with ME/CFS. That's always a problem with symptoms surveys -- current symptoms don't necessarily reflect the full nature of the illness in treated patient populations. The IOM was working with the reports/surveys available to them which may or may not reflect the full patient experience.

I don't have pain of any kind now, nor have I had consistent pain for a couple of years. However, I definitely had myalgia before I was treated by ME/CFS specialists, and I still get it again when I PEM. So while myalgia is definitely a feature of my illness, on a current symptom survey, I would have to say I don't have pain.

 

[Nielk]

Here is the ME ICC primer. http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf

 

[medfeb]

I can propose a possible solution to this polarising problem.

Separate Myalgic Encephalomyelitis from Systemic Exertional Intolerance Disease. Those who qualify for an ME diagnosis as per ME-ICC retain the ME name with its WHO ICD code under neurological diseases. Those who qualify with the IOM criteria retain the SEID name with the new ICD code that will be assigned to them.

It is impossible, as we are experience, to satisfy both groups. A patient with ME, whose symptoms are mainly myalgia and CNS inflammation will never be happy with the IOM criteria or the name SEID. Those that don't fit the ICC and perfectly fit the IOM criteria, do not suffer from myalgia or cns inflammation, will no be happy with ME.

Thinking out loud and ignoring the choice of name for the moment…

Is the polarization because there are actually two separate diseases here, one described by SEID and one described by ICC? Or is the polarization because some feel that the criteria defined by IOM do not do a good enough job of representing the disease we call "ME" while others feel that the criteria are good enough to move forward?

makes me think of what Hyde said - "Definitions are not diseases, they are often simply the best descriptions that physicians and researchers can offer." So are there really two different diseases? And was IOM trying to develop a criteria for just one of them? Or do we have two different definitions trying to describe the same disease?

Once PEM, unrefreshing sleep and cognitive dysfunction are defined as core symptoms, it doesn't seem like we are dealing with two diseases. If that's true, then it seems that the question boils down to whether the new criteria accurately reflect the nature and breadth of the disease they are intended to describe - including neurological and immunological, while also avoiding the CFS definition problems that led to this disease being conflated with psychiatric disease, medically unexplained fatigue, etc for 30 years.

 

[SOC]

On a lower level, this study found 7 different subtypes based on gene expression, SF-36 score, clinical phenotype, and severity.

Interesting. Too bad the sample group was so small. I don't really understand the statistics used here, but it seems to me that subgroups containing only 2 or 3 members are of questionable significance. I'd love to see this research replicated on a much larger group.

I also wonder, in any research using current symptom reporting, how much stage of the illness and treatment protocols are affecting the symptom reporting. In other words, in grouping patients by symptoms are we catching different overall illnesses, different stages of the same illness, or variations in treatment? What makes this study particularly interesting is that gene expression was closely correlated to symptoms. Still, gene expression could still be a function of stage or treatment.

 

[Nielk]

Thinking out loud and ignoring the choice of name for the moment…

Is the polarization because there are actually two separate diseases here, one described by SEID and one described by ICC? Or is the polarization because some feel that the criteria defined by IOM do not do a good enough job of representing the disease we call "ME" while others feel that the criteria are good enough to move forward?

makes me think of what Hyde said - "Definitions are not diseases, they are often simply the best descriptions that physicians and researchers can offer." So are there really two different diseases? And was IOM trying to develop a criteria for just one of them? Or do we have two different definitions trying to describe the same disease?

Once PEM, unrefreshing sleep and cognitive dysfunction are defined as core symptoms, it doesn't seem like we are dealing with two diseases. If that's true, then it seems that the question boils down to whether the new criteria accurately reflect the nature and breadth of the disease they are intended to describe - including neurological and immunological, while also avoiding the CFS definition problems that led to this disease being conflated with psychiatric disease, medically unexplained fatigue, etc for 30 years.

Remember the great blog about which disease will they be studying CFS or ME?

Many who are now opposing the IOM results feel that they are not describing CFS.

We feel that it is way too inclusive and with only subjective symptoms, it is a big mistake not to list exclusions of other similar active diseases. We feel that there will be a lot of people diagnosed with SEID who do not have the disease.

This in turn will further water down the real disease. It's like ME is being buried further down.

 

[SOC]

If that's true, then it seems that the question boils down to whether the new criteria accurately reflect the nature and breadth of the disease they are intended to describe - including neurological and immunological, while also avoiding the CFS definition problems that led to this disease being conflated with psychiatric disease, medically unexplained fatigue, etc for 30 years.

I wonder if this is where some of the confusion and disagreement lies. Diagnosis criteria are not intended to describe the the full breadth of the disease. They are a tool for identifying patients, not describing the disease in all it's glory. This is true for all diseases, not just ME/CFS. If people are expecting a diagnosis criteria to fully describe the disease, they are going to be disappointed by any diagnosis criteria, whether it's for diabetes, MS, lupus, or ME/CFS.

The full IOM report goes into a fair amount of detail describing the disease, but the diagnosis criteria themselves are necessarily more compact.

Our safest position may be that SEID is an umbrella diagnosis that includes all diseases experiencing PEM. ME may be one of those diseases, possibly the largest part of the SEID family. Without a better understanding of the etiology and biomarkers of the disease, we may not be able to fully distinguish the subsets or different diseases exhibiting PEM. This is why we need a LOT more research before we can really say this subset is clearly a different disease from that subset.

 

[Nielk]

Diagnosis is not meant to describe disease but it is meant to select the right patients who suffer from that specific disease.

 

[taniaaust1]

The only thing I worry about with splitting the two is that we don't actually know for sure that they're two distinct diseases. They could be a spectrum or different presentations of the same disease.

True but its worst if they are completely different things and are lumped together as that just screws up all the research and everything else

if they turned out to be same thing.. they can always be merged again at a later date when we have good biomarkers and the research on the illness is better and in this case it would mean separate subgroups of the illness were studied so that is a bonus having good info on separate subgroups. The subgroups are really needing focus on any way.

 

[taniaaust1]

I was thinking something similar. I see a huge overlap between SEID and ICC-defined ME. I don't see how we could justify claiming them as two separate conditions. Maybe we could justify ME as a substantial subset of SEID...?

Can someone give me an example of a patient presentation that would meet ME-ICC but not SEID?

Similarly (this is probably easier), can someone list several different presentations that would meet SEID, but not ME/CFS - CCC?

SOC I meet both the CCC and the international ME criteria well but do not well meet SEID which leaves my diagnoses in doubt.

In my case this is cause the unrefreshed sleep part of the SEID diagnoses. In those other two criterias nothing is thought about a person not having unrefreshing sleep (in the other criterias one has to have a certain amount of symptoms from certain areas). Of cause there are MANY different sleep issues in ME eg reversed sleep cycle and insomina as I more commonly get.. these thou do not necessarily mean unrefreshing sleep.

In the SEID criteria it says the diagnoses should be questioned if a person isnt getting unrefreshed sleep at least 50% of the time, this will cause every new doctor I see to go and question it thou Im a severe ME patient who has LOTS of the ME testable abnormalities. So what happens to the ME person who doesnt get unrefreshed sleep? (My POTS is currently helping keep me out of ME crashes as I can hardly do anything exercise at all due to the severity of it so hence I wake up not tired.. refreshed in morning.. sighs that is until I try to do anything on my feet).

In my case as long as I stay out of a crash and are getting enough sleep eg being able to sleepin with my insomina and reversed sleep cycle, I dont get any unrefreshed sleep (I used to have that all the time but just dont now).

There are others at this site too who have ME who do not meet the SEID criteria well. So even for this reason there is going to be a group of us who wont be taking on that name and definition.

The SEID has made things even more confusing as now there are THREE different groups.. ME and SEID and the ones who had Fuduka defined CFS who now dont have a name for whatever they have.

 

[SOC]

Diagnosis is not meant to describe disease but it is meant to select the right patients who suffer from that specific disease.

Now we're back to my original questions. Who, specifically, will be included by one diagnosis criteria, but not by another? How different are the patients selected by the criteria and in what way are they different?

@Nielk, I think you and I are talking a cross-purposes. You appear to be trying to tell me that the ICC, CCC, and SEID diagnosis criteria are different. I full well understand that and don't dispute it. I'm asking a different question, which you are not addressing. Can we stop this back and forth and let someone try to answer the questions I'm asking? I think clear answers to my questions could provide useful ground for discussion about the value (or not) of the SEID diagnosis criteria which might help this Yes or No discussion develop along useful and interesting lines. You and I talking back and forth about points upon which we both agree is not forwarding the discussion in any way.

 

[taniaaust1]

The problem is that the ME people, the 25% group and others who believe that they have the authentic disease from Dr. Ramsey believe that they suffer from the authentic disease discovered many decades ago. They feel that CFS is a construct by the CDC to make ME disappear. They feel that the SEID criteria is a further effort to bury the true ME, with it's history dating back to Dr. Ramsey and all the different outbreaks worldwide.

They certainly don't think that they are a subset of SEID.
.

When one doesnt even meet the current SEID criteria well, how can one even be seen as a subset of it?

Where they really screwed up with the SEID, is they focused on "fatigue" too much and hence why they've come up with "unrefreshing sleep" being part of the criteria. In ME thou.. other symptoms can be majorly dominating the symptom picture. Ramsey and other ME specialists recognised this.