Poll: Which name is better: Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?

[Dolphin]

I'm growing to like Systemic Exertion Intolerance Disease the more I reflect on it. It was exerting myself which caused me to go from being mildly affected (which I was for the first few years of the illness e.g. full-time education at a high level) to becoming severely ill & chronically affected for the last 20.5 years. Having "Systemic Exertion Intolerance Disease" is a good way to explain this phenomenon it seems to me (I don't think we have a good handle on why this happens i.e. I'm not sure any technical name would necessarily explain it).

 

[Nielk]

We might understand the meaning of each word in Systemic Exertion Intolerance Disease but, to the world out there, it just means that you can't overexert yourself. It is not less demeaning than Chronic Fatigue syndrome.

 

[beaker]

We might understand the meaning of each word in Systemic Exertion Intolerance Disease but, to the world out there, it just means that you can't overexert yourself. It is not less demeaning than Chronic Fatigue syndrome.

wonder what the P2P will say about a name now?-- if anything. I can't remember what was what from the 2 groups. too bad the name didn't reflect the meat of the report.

 

[Dolphin]

I'm less concerned by attitudes of the public than by how a name affects the medical and scientific fields. The public tends to take their views from what the medical profession think.

As I've mentioned, "chronic fatigue syndrome" allows for weak criteria like the Oxford criteria, empiric criteria and even the Fukuda criteria. None of these require post-exertional symptoms. These have led to all sorts of problematic research.

"Systemic Exertion Intolerance Disease" ensures that post-exertional symptoms have to be part of the criteria.

 

[worldbackwards]

If it comes to it I'd be happy to be rid of CFS, but it reminds me of something I once read about someone asking an Irishman the difference between their two main political parties. He replied that it was 'the difference between shit and shite'.

 

[Nielk]

It makes it sound like we only have a problem when we exert ourselves. As if when we don't overdo it, we are fine. We are sick all the time. Some of us very seriously ill with a lot of pain. PEM is only a symptom when we overdo it. It is not a constant. As many have pointed out, if one paces and rests all the time, they may not experience PEM.

 

[SOC]

IAs many have pointed out, if one paces and rests all the time, they may not experience PEM.

Not the point. The point is that exertion WILL bring on PEM, or an increase in symptoms -- whatever those symptoms are in any individual patient. That is the identifying feature of this illness -- exertion (mental or physical) brings on symptoms in a way seen in no other condition. This is very peculiar and needs serious investigation.

The fact that we can (attempt to) avoid PEM (in some cases) by pacing to limit exertion doesn't change the fact that if we DO exert, we have very serious problems.

The name is not trying to describe the symptoms; it's trying to describe the disease.

Not that I'm all that thrilled about the name... but it may be the best we can get in the short-term.

 

[Sean]

PEM is only a symptom when we overdo it. It is not a constant. As many have pointed out, if one paces and rests all the time, they may not experience PEM.

Maybe, but controlling PEM is still driving that management strategy.

What name do you propose?

(Serious question. Not being snarky.)

 

[Undisclosed]

It makes it sound like we only have a problem when we exert ourselves. As if when we don't overdo it, we are fine. We are sick all the time. Some of us very seriously ill with a lot of pain. PEM is only a symptom when we overdo it. It is not a constant. As many have pointed out, if one paces and rests all the time, they may not experience PEM.

I am not happy with the name. It's better than stupid "Chronic Fatigue Syndrome". I think the word 'disease' is important though. The rest well, we need something better. But what? It's hard to have a disease with a name that clearly states what the disease is unless there is a distinct biomarker. I think we should seriously work together and come up with a good name and then suggest it to the powers that be.

I don't think that we will ever come up with a name that every body agrees with though. I guess in the long run we might have to settle for the best alternative. I don't care though. I want my symptoms to be treated seriously. I want to be able to go in a doctors office and be treated like I have a real illness. That's what is important to me. I need respect. I need doctors to help me not feel like shit. I have pain which is untreated. I have temperature dysregulation which is untreated. I have dizziness, OI, which is untreated. I don't care what you call my disease. 18 years of this. What the hell. Why am I still looking for symptom relief. Let's educate Doctors. Isn't this what the IOM is attempting to do.

 

[Nielk]

The problem with the IOM study is that they designed simple criteria for anyone to be able to diagnose ( even a nurse). No tests can be ordered and they are just to treat the symptoms.

Actually the treatment will be the same whether one fits the diagnosis or not. Either way, foctirs are just to treat symptoms.

There will be no testing for viral load, nk cell function or any blood test.

That's pretty scary.

We need specialists to properly treat us.

 

[Nielk]

Maybe, but controlling PEM is still driving that management strategy.

What name do you propose?

(Serious question. Not being snarky.)

My personal proposal is ME. The reasons for it because there is history to it. It ties back to breakouts. Why are there numerous patients in families? Why isn't that looked at.

They accepted ME as a hybrid with CFS but now they say they can't call it ME because there is not evidence of neuro inflammation?

There is research pointing to it but not large scale ones.

Also, ME already has a neurological coding in the WHO.

Let's call it ME and do large scale replication studies to prove it once and for all.

 

[SOC]

We need specialists to properly treat us.

We do. And that will come as research develops and HHS/NIH comes to realize this is way over the head of PCPs. They don't get it now, but they will. I also expect PCP's to start screaming bloody murder that they are no way capable of treating this complex condition. But that will take some time -- not much, I hope.

We are not going to get everything all at once. That's not realistic. The probability of an overnight 100% turn-around of the medical world's perception of this illness is nil. What we want are some big steps forward, which the IOM report gives us. It's not everything. It's not perfect. It never could have been.

Let's take this huge gift we got in the IOM report and run with it. We need to use it as a springboard to get the rest of what we need, not throw it away because it didn't give us every little thing we wanted right out of the gate.

 

[Nielk]

I don't look at it as a gift at all.

If what you are looking for is for everyone to be able to quickly get a diagnosis of SEID, than you got it.

One who thinks they have this disease, will be able to walk into any doctors office and get a diagnosis and a name ( not a good one) for what's ailing them.

Now what?

 

[SOC]

My personal proposal is ME. The reasons for it because there is history to it. It ties back to breakouts. Why are there numerous patients in families? Why isn't that looked at.

They accepted ME as a hybrid with CFS but now they say they can't call it ME because there is not evidence of neuro inflammation?

There is research pointing to it but not large scale ones.

Also, ME already has a neurological coding in the WHO.

Let's call it ME and do large scale replication studies to prove it once and for all.

ME was never accepted, even as a hybrid with CFS, as the official name for our illness. It was used in an informal way by a few suborganizations at the request of patients, but it was never used as an official, code-able name in the US.

They've already said, even the IOM panel who is very supportive of us, that ME is just not going to fly. They cannot justify it (yet) as the official name. We can whine all we want, it's not going to change that fact. Making pouty faces and stamping our feet is not going to change our bedtime. They've been clear that neither "myalgic" nor "encephalomyelitis" is scientifically justified (yet). "We don't like it" doesn't change the science.

SEID is a placeholder name. Let's spend our energy speeding up the research so that we have biomarkers and causes so that a scientifically justified name can be identified. Maybe it will be myalgic encephalomyelitis. If it is, we can laugh and point fingers later.

 

[Sean]

Neil

For various scientific and political reasons we are not going to get ME, it is off the table now, permanently I suspect. But so is CFS, which is a step forward.

My personal preference is for Ramsay Disease, until we get a better handle on the underlying pathology. But we are not going to get that either.

One who thinks they have this disease, will be able to walk into any doctors office and get a diagnosis and a name ( not a good one) for what's ailing them.

And how is that any worse than the current situation with the CFS label? At least SEID requires PEM, that alone is a big step forward, I think.

 

[SOC]

I don't look at it as a gift at all.

If what you are looking for is for everyone to be able to quickly get a diagnosis of SEID, than you got it.

One who thinks they have this disease, will be able to walk into any doctors office and get a diagnosis and a name ( not a good one) for what's ailing them.

Now what?

You are focusing on the name. I'm focusing on the report. The name is not a gift. The report very much is.

 

[Nielk]

I am talking about the report as well. I am talking about the criteria. They are way too simplistic. Anyone with symptoms if fatigue will be able to get a diagnosis.

They do not require exempting other similar disease. It doesn't require pain, neuro endocrine or immune symptoms.

It's basically described as a fatiguing illness. I am happy that they included PEM but not at the expense of leaving the other symptoms out.

They are not describing the neuro immune disease that I have.

 

[SOC]

I am talking about the report as well. I am talking about the criteria. They are way too simplistic. Anyone with symptoms if fatigue will be able to get a diagnosis.

Not if they don't have PEM, which is the identifying characteristic of the illness. That is a HUGE improvement over the CFS diagnosis.

I agree that a lot of physicians will misdiagnose in the early days because they don't know what PEM is. That's no different than the current situation with CFS. But with the new diagnosis, we can eventually educate doctors that fatigue and exercise intolerance are not PEM.

They do not require exempting other similar disease. It doesn't require pain, neuro endocrine or immune symptoms.

It's basically described as a fatiguing illness. I am happy that they included PEM but not at the expense of leaving the other symptoms out.

They are not describing the neuro immune disease that I have.

You must be reading a different report than I am. I agree that the name and the simple diagnosis doesn't go into any detail, but that's just the beginning of what's in the 300 page IOM report.

 

[Nielk]

The report reads very well - I agree. they seem to understand the disease very well and invalidate what we are going through. They have listened to us and taking us into account. They have read our comments.

But, doctors are not going to read the whole report, except for our experts. What doctors are going to read is the handbook for practitioners that state the criteria of the disease.

Anyone who complains about fatigue of over six months who can sleep well could be diagnosed with it. When asked, are you more tires after increased activity? I can see many answering in the affirmative. Since no testing is demanded to demonstrate PEM (which i understand because of the risk of damage)., it is a subjective symptom.

That's why I'm upset that they left off neuro endocrine and immune symptoms out.

 

[Nielk]

ME was never accepted, even as a hybrid with CFS, as the official name for our illness. It was used in an informal way by a few suborganizations at the request of patients, but it was never used as an official, code-able name in the US.

They've already said, even the IOM panel who is very supportive of us, that ME is just not going to fly. They cannot justify it (yet) as the official name. We can whine all we want, it's not going to change that fact. Making pouty faces and stamping our feet is not going to change our bedtime. They've been clear that neither "myalgic" nor "encephalomyelitis" is scientifically justified (yet). "We don't like it" doesn't change the science.

SEID is a placeholder name. Let's spend our energy speeding up the research so that we have biomarkers and causes so that a scientifically justified name can be identified. Maybe it will be myalgic encephalomyelitis. If it is, we can laugh and point fingers later.

What kind of research will they do based on a criteria that doesn't even take into account neuro endocrine and immune problems? They will do research in fatigue and sleep?