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

[cigana]

However, the exertion had to be a lot more when I was mildly affected. If you don't have an abnormal response to exertion, I'm not sure you have this condition.

I used to have a much stronger abnormal response to exertion than I do now. What if I now fall on the "wrong" side of the definition chosen based on PEM? Do I no longer have the same disease? I hope I have rights to a diagnosis and treatment if the same pathogen is causing illness in me.
If I had a photo of someone, and I was trying to explain to my friend whether or not the person was attractive, I wouldn't just say "her eyes are between 3.1 and 3.3 inches apart" - I would just show my friend the photo and let him decide.

I am not saying it can't be the case that those with strong strong PEM suffer from their own unique illness, I'm just saying that until we find the cause, there's no point in assuming that. If you codify, you capture everyone, it doesn't exclude people who believe abnormal response to exertion as their defining characteristic. Why not win both ways?

People with chronic infections can be picked up by other researchers.

Sure, but aren't you assuming there that there are only two things causing illness: (1) whatever causes your particular definition of PEM and (2) other chronic infections? Why make this assumption?

Anyway, I'm not convinced there is a problem basing it around requiring people to have PEM.

The problem is some people will fall one side of the definition, some the other, and some will switch back and forth. Some will have the same underlying pathogen but not get a diagnosis/treatment. Someone who thinks that they have "lyme" may actually have the same disease as someone who doesn't. If you already have the extra information, no point in throwing it in the trash because of a preconceived link between a symptom definition and pathophysiology

 

[Purple]

(from @maxwhd on Twitter https://twitter.com/maxwhd/status/567841031741431809 - he doesn't agree of course)

@maxwhd UK Chalder Crawley Collin Stearne Hollingworth May agree - CFS an illness - not a disease #mecfs #seid #IOM

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Lots of others of the CBT school of thought, or other psychobabble, wouldn't want it called a disease also.

Lots of time spent on talking about wording... do these 'researchers' realise that many languages have the same word for 'disease' and 'illness'?

 

[Purple]

Has anyone here seen a neurologist who treated them as if they had a serious disabling neurological disease?

I realise this was probably a rhetorical question - but in my case, all neurologists I have seen in various stages of being ill treated me with respect and acted as if I had a serious disabling disease *with* neurological components that they felt should be in their remit to treat, they then apologised they currently don't have the tools to help me (due to being let down by lack of research on ME... all they could do was to use their clinical judgment and experience with similar diseases and offer me symptom relief) and encouraged me to come back to them as soon as there was something they could do for me. This includes NHS.

I never had enough of a conversation with them to find out if they think if ME is fully neurological - however, I got the impression that they have seen it as something that needs to be treated and they should be able to help in some way.

 

[Sidereal]

I realise this was probably a rhetorical question - but in my case, all neurologists I have seen in various stages of being ill treated me with respect and acted as if I had a serious disabling disease *with* neurological components that they felt should be in their remit to treat, they then apologised they currently don't have the tools to help me (due to being let down by lack of research on ME... all they could do was to use their clinical judgment and experience with similar diseases and offer me symptom relief) and encouraged me to come back to them as soon as there was something they could do for me. This includes NHS.

I never had enough of a conversation with them to find out if they think if ME is fully neurological - however, I got the impression that they have seen it as something that needs to be treated and they should be able to help in some way.

That's great to hear that some neurologists treat ME patients with respect and compassion. We tend to hear about the horror stories so it's always good to get a more balanced view of things.

 

[WillowJ]

I would like to caution a bit about the focus on PEM.

....

I have wondered about this. I didn't notice PEM the early stages of my disease. But I finally decided that we needed to find some characteristics, or else we would always be stuck with random fatigued patients that might have this disease or might be developing, or have missed cases of, MS or Lupus or whatever else (instead of, not in addition to, ME/SEID)... and we would never, ever find pathology of this disease without a distinguishing characteristic.

In other complex diseases, they say it's probably this disease (and diagnosis can be made) if they have most these specific characteristics (and some of these lab tests, where available--NB "these lab tests" for other diseases became available by following a diagnosis based on clinical presentation, as far as I understand it). If they don't have that specific profile, think very hard before you make this diagnosis. And in any case, do an exam and workup to double-check that it's not other things. That's the same approach that SEID takes.

My thought is that using a specific profile will help misdiagnosed patients to get proper diagnoses. And narrow the pool of ME/CFS/SEID patients to more who have a similar neuro-immune illness.

(But we have to take down the separate CFS classification for this to work--otherwise: have wastebasket diagnosis, will use. Some docs seem to not like to have patients that are difficult to understand, and CFS is the perfect excuse for "can't work it out" or even "personality conflict" because there is no approved treatment, so it's been thought that nothing further needs to be done. ME/SEID patients, Lupus patients, MS patients, Ehlers-Danlos patients, patients with thyroid or pituitary conditions, patients with rare diseases, etc., will continue to get stuck in "CFS" and ignored.)

Then whoever is left that does not have ME or SEID, not Lupus, etc., and truly cannot be diagnosed by any existing diagnosis... what they have will become more clear. Either this disease (without PEM) is also identified by new biomarkers because we were able to validate and/or find some as diagnostic because the pool being studied as "CFS"--->SEID---> [new pathology-based name(s), possibly including ME-itis] became more appropriate, or people who never develop PEM have a new unrelated disease which can then be studied on own. With a much, much more appropriate name than CFS.

That's maybe a bit idealistic, but that's how I think it ought to work.

And that's based on hoping the new criteria work, which we don't actually know yet until it's tested.

 

[WillowJ]

The other option is to go ahead and study all the "CFS" patients we can find, but do it only in multi-thousand patient studies (maybe tens of thousands, not sure), and try to figure out lots of subgroups/ disease divisions. But that would take lots and lots of money, much more funding than anyone has ever been willing to spend on CFS, ME, etc.

 

[SOC]

Some with PEM lasting a month, some only a couple of hours, depending on the day, or the length of the illness.

This is new to me. I didn't think a couple of hours of symptom exacerbation qualified as PEM. The ICC says:

Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.

A couple of hours of symptom exacerbation sounds more like exercise intolerance, a different animal, which is a symptom in a variety of fatiguing conditions. If someone diagnosed with ME/CFS only has a couple hours of symptom exacerbation, I'd suggest they make a major effort to be evaluated for some form of primary dysautonomia or other cardio-respiratory condition.

For me, a short recovery period is 10 days. My longest have been 6 months or more. I'm not sure I'd even notice a couple hours of symptom exacerbation.

The other option is to go ahead and study all the "CFS" patients we can find, but do it only in multi-thousand patient studies (maybe tens of thousands, not sure), and try to figure out lots of subgroups/ disease divisions. But that would take lots and lots of money, much more funding than anyone has ever been willing to spend on CFS, ME, etc.

And some very sophisticated, maybe approaching impossible, science. In order to subgroup an extremely heterogeneous population, you have to have some sense of what makes up the subgroups. There's generally too much variety in that kind of population to select out what is relevant variation and what is normal variation. Part of the problem we have with research now is that we are too hetergeneous a population so researchers are not able to find anything consistent in a majority of the population. The recent Hornig-Lipkin research highlights this -- when the <3yrs and >3yrs groups are combined, the average of the group is no different from the healthy controls. Depending on whether a given study happened to have more <3yr patients, more >3yr patients, or an even mix, the conclusions might show high cytokines, low cytokines, or normal cytokines. So studies give contradictory results. Not good for us.

We need to study a group that clearly has the disease with no ambiguity. That's probably the moderate/severe population with unquestionable PEM. Once we've isolated some abnormalities to investigate, then we can expand the study cohorts to include the larger population who may or may not have the same condition -- mild patients, patients with little or no PEM, and so on.

Just to be clear, that does not mean that patients in the larger group should not get a clinical diagnosis and appropriate treatment. For treatment purposes, we need to err on the side of inclusion so that likely (even if not definite) patients don't go untreated.

 

[WillowJ]

And some very sophisticated, maybe approaching impossible, science. In order to subgroup an extremely heterogeneous population, you have to have some sense of what makes up the subgroups. There's generally too much variety in that kind of population to select out what is relevant variation and what is normal variation. Part of the problem we have with research now is that we are too hetergeneous a population so researchers are not able to find anything consistent in a majority of the population.

That makes sense. Of course, the primary goal of such mega studies would not be finding something consistent in the majority of the population, but figuring out testable ways to divide this unlike population into studyable groups.

But as I said, this would be enormously expensive. And I believe you that it would be amazingly complicated.

 

[cigana]

This is new to me. I didn't think a couple of hours of symptom exacerbation qualified as PEM. The ICC says:

Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.

That's just a definition, so according to that definition, 2 hours is not PEM. I just mean to point out that there can be a large variation in PEM, so there's no point in defining it as a single thing when we already have enough information to give it a number instead, and therefore characterise an entire spectrum of patients.

A couple of hours of symptom exacerbation sounds more like exercise intolerance, a different animal, which is a symptom in a variety of fatiguing conditions. If someone diagnosed with ME/CFS only has a couple hours of symptom exacerbation, I'd suggest they make a major effort to be evaluated for some form of primary dysautonomia or other cardio-respiratory condition.

What about these variations:

• Someone whose PEM used to last 5 days but now lasts 20 hours. Do they now have a different disease?
• Someone whose PEM does not usually last more than 24 hours but sometimes can last a week.

For me, a short recovery period is 10 days. My longest have been 6 months or more. I'm not sure I'd even notice a couple hours of symptom exacerbation.

I'd definitely give you a 5 for PEM

In order to subgroup an extremely heterogeneous population, you have to have some sense of what makes up the subgroups.

That's exactly why you'd codify the symptoms.

We need to study a group that clearly has the disease with no ambiguity. That's probably the moderate/severe population with unquestionable PEM.

If you want to be clearly in the PEM category you just choose patients with a PEM of 5. If you want to study the absolute worst cases you choose the 55555's.

 

[cigana]

That's maybe a bit idealistic, but that's how I think it ought to work.
And that's based on hoping the new criteria work, which we don't actually know yet until it's tested.

The beauty of codifying is you don't have to hope or idealise, it just works.

 

[SOC]

That's just a definition, so according to that definition, 2 hours is not PEM. I just mean to point out that there can be a large variation in PEM, so there's no point in defining it as a single thing when we already have enough information to give it a number instead, and therefore characterise an entire spectrum of patients.



What about these variations:

• Someone whose PEM used to last 5 days but now lasts 20 hours. Do they now have a different disease?
• Someone whose PEM does not usually last more than 24 hours but sometimes can last a week.

Darned good questions. And no good answers as far as I can tell. There's also people, like my daughter, who used to get PEM from daily life activities. She hasn't PEMed in several years, but is taking a boatload of treatments in order to function normally. Does she now not have ME/SEID? I would guess she still does, but who knows? There is far too much variability in this illness right now to be certain about much of anything.

I'd definitely give you a 5 for PEM

Oh dear, am I an exception? I thought most of us had PEM that lasted weeks. Am I wrong?

That's exactly why you'd codify the symptoms.

If you want to be clearly in the PEM category you just choose patients with a PEM of 5. If you want to study the absolute worst cases you choose the 55555's.

Agreed.

 

[cigana]

Oh dear, am I an exception? I thought most of us had PEM that lasted weeks. Am I wrong?

Well, from my point of view that's a 5 Either way you get a 5 for courage...

 

[Tom Kindlon]

My new blog post on the name:

Brief Thoughts on why I'm passionate to get rid of "Chronic Fatigue Syndrome"
http://forums.phoenixrising.me/inde...-to-get-rid-of-chronic-fatigue-syndrome.1730/

 

[Dolphin]

Systemic Exertion Intolerance Disease gives permission not to exert, I think, and so somebody should be eligible for supports e.g. disability payments, aids, etc.

Chronic Fatigue Syndrome can be spun in various ways and is more vulnerable to people saying one should just push through, I think.

 

[Dolphin]

Cort Johnson highlights how he thinks Systemic Exertion Intolerance Disease (SEID) could help.

"SEID says what it is – there are no mysteries involved. Any doctor should immediately understand the prime characteristic of the disease – an inability to exert oneself – and refrain from pushing patients too hard, simply by hearing it. Telling them to go exercise themselves out of this illness should disappear. That would help an awful lot of people."

(from: http://bit.ly/1vDt43J i.e. http://www.cortjohnson.org/blog/201...new-name-definition-chronic-fatigue-syndrome/ )

 

[katelulu]

I think that a name change to SEID would be devastating for people with ME/CFS. There has been far too many name changes as it is!! Why not just get rid of CFS, as this is the term that is belittling to the disease. I have had ME for almost 20 years and I understand the battles that have to be fought, not just with the medical profession but with the public also, but I don't believe that changing the name completely will help, in fact the opposite! Keep it as ME. Really its not hard!! This name has been used for decades now and medically describes the disease. I am outraged at the thought of another a name change and what further confusion and questioning this will bring!

 

[Esther12]

Why not just get rid of CFS, as this is the term that is belittling to the disease.

That's not an option at the moment.

 

[worldbackwards]

To be honest, the name ME is more fondly regarded round here than anywhere else. In the UK press they largely call it ME and it never stopped them from abusing or patronising us. It's no great holy grail.

 

[Nielk]

That's not an option at the moment.

At the moment, nothing has been decided yet, There is only the recommendation by the IOM.

 

[George]

Hey Folks I'm an oldster from way back but I mostly just lurk these days. (big grins) But of course the IOM thingy has got everybody paws up so I thought I'd swing my tail and offer a thought or two into the mix.

First CFS is coded in the US only (780.71) while ME has no code in the US at all. There was some talk about adding ME in the ICD-10 code updates but . . . hey, 'Mercia, not sure that ever worked out.

ME is coded in the WHO (G93.3) The ME code isn't used in the US cause hey. . . 'Mercia. (grins)

The IOM recommendation of SEID is just a recommendation and only applies in the US to the US codes. It would also have to get HHS approval and then have to go through the process of becoming a code. Which is a 2 to 5 year process.

SEID wouldn't replace CFS but would exist along with CFS. It would be a new disease category. CFS is used by doctors to bill in cases where the actual illness is unknown at the time so it's not going away. Not too many codes ever go away but CFS is especially handy for most doctors while they wait for test to confirm a different diagnosis like cancer of diabetes so the code is important in the billing process. Which is why creating a new code/diagnosis is important to moving the disease out of this general catch all.

Once the HHS decided to make SEID a category, assuming they do, then the CDC would be required to produce education materials and to sponsor very expensive CME's regionally to educate doctors on criteria and most importantly that patients who currently have CFS need to be reassessed right away. In order to incentivize this process they often offer extra CME credits for number of patients reassessed. (they did with MS) The initial expense is high however it's a great job creator and use of funding that is allotted under the ACA so it's got a good chance of happening. Medical expansion and funding under the ACA is potentially our friend in the coming decades.

Sadly none of this would affect those outside of the US until or unless that country decided to adopt the same protocols. (sad dog eyes)

The IOM report coupled with the CFI cytokine profiles offers a very attractive package for diagnosing this group of our community which would eventually be know as SEID. For around $1000 doctors can test patients for IL-1a and beta, TNF-a IL-6,8,10 those tests along with the questions provided in the IOM recommendations would pull out a fairly homogenous group of people (estimated 83%) and provide a definitive and objective diagnosis. This is as close as we have ever been to having that prestigious state. (grins)
Note:If they are under 3 years those numbers will be higher than normal when taken over a 6 month period (testing in the beginning would need to be at least twice due to natural fluctuations) Over 3 years folks the numbers would be in the lower 1/3.

So you have between the two things a way of identifying, subjectively, a large portion of people who have a system wide reaction to those forms of exertion that would be considered part of everyday life for the rest of human population.

It makes me very happy (ears up) that such a large portion of folks could conceivably be rounded up and objectively diagnosed in the coming decade and equally sad that some whom we know and love may not be in this group. But I have considered long and hard and I'm very much pleased with the IOM recommendations.

(Tail wags)
George Dawg