Will S.E.I.D. be accepted as (be proven to be) valid?

[snowathlete]

I think looking back in twenty year's time, this new name will seem quite inadequate. I agree with others that it's not simply about exersion. I think a lot of patients and advocates have shouted a lot about "post-exersional malaise", so likely this is one major reason why "exersion" has become part of the new disease label they've come up with - because of our communities focus on it, even thought our focus was a bit different.

I think it's a shame that there isn't any focus on the immune system in the name as I feel it is key and will stand the test of time as a relevant aspect of our disease and I think there is adequate evidence to support this already.

SEID is undoubtable a step forward from CFS but then that was never going to be hard was it. The positive is that we have a clean slate in theory research wise, but as before we have no money for decent research. But the psychobabblers will be out in full force publishing away as furiously as they can to try and set themselves up as the experts in this 'new' disease. I worry about this because although a new name brings opportunity potentially, these guys are well practiced in manipulation and will be ready to take advantage and spin things.

The thing we really need if things are going to change for the better is a big chance in research funding from government for true biological research to take things forward, whatever the name. Without that, the name is kind of irrelevant.

 

[Gingergrrl]

I've never used CFS, as I was not diagnosed with it, and (weirdly considering I'm in the UK) none of the various doctors I've seen have ever used CFS when referring to the disease I am suffering from. They have always used M.E. and I was okay with that. I still am.

@CantThink Ironically in the US, it is the exact polar opposite and the word ME is literally unheard of and not used here. Doctors here either use the term CFS or they use nothing. I do not like the new name "SEID" but I am liking that the press here in the U.S. today is all saying that "CFS is a real biological disorder." I don't think the random person on the street will think anything of "SEID" compared to the negative connotations associated with CFS. But I know it is very different in the UK. I would have been happy to adopt the term ME over here in the US b/c it sounds more serious and would be a fresh start and not sure why this did not happen?

 

[snowathlete]

@CantThink Ironically in the US, it is the exact polar opposite and the word ME is literally unheard of and not used here. Doctors here either use the term CFS or they use nothing. I do not like the new name "SEID" but I am liking that the press here in the U.S. today is all saying that "CFS is a real biological disorder." I don't think the random person on the street will think anything of "SEID" compared to the negative connotations associated with CFS. But I know it is very different in the UK. I would have been happy to adopt the term ME over here in the US b/c it sounds more serious and would be a fresh start and not sure why this did not happen?

I think this highlights the fact that the name perhaps means very little, it is how we are treated and whether the disease gets more research dollars that will matter. Some of my docs here in the UK say CFS and others ME but they all treat me the same - they do nothing to help.

In the US if they start using SEID but nothing really changes in how they treat and research the disease then we gain little.

 

[jeff_w]

I don't like SEID at all. The "Exertion Intolerance" part of SEID can easily be misconstrued as "lazy." This is a problem of perception that we already have--many in the medical profession already see us as nothing more than lazy.

Ridiculous new name.

 

[SOC]

Not saying I agree with this thinking, just trying to explain what I think is going on...

I believe the point of using "exertion intolerance" (PEM?) in the name and diagnosis, without other symptoms we know are part of the illness, was an attempt to distinguish SEID from other illnesses while simplifying diagnosis for the average GP. PEM is the unique feature of ME/SEID. If you have PEM, you have SEID and not something else. Pain is not defining. OI is not defining. PEM is.

SEID is, without question, a clinical definition. It is designed to catch everyone with the illness so that people don't get denied treatment. It is not designed to be a tight definition. We still need to have a research definition (ICC?) which is much more comprehensive and tighter.

One major concern I have is that very few GPs (IMO) are going to notice the distinction between exercise intolerance, which is a known symptom of a number of conditions, and exertion intolerance which is supposed to be unique to ME/SEID. They'll be massively overdiagnosing SEID, if they don't understand the distinction.

 

[Gingergrrl]

I don't like SEID at all. The "Exertion Intolerance" part of SEID can easily be misconstrued as "lazy." This is a problem of perception that we already have--many in the medical profession already see us as nothing more than lazy.

Ridiculous new name.

I agree with you and I guess I am trying to see if there is any bright side that can come from this? Also, is this name permanent or still up for discussion with the IOM committee? I am confused about that part.

 

[IreneF]

Not the best name, not the best definition, but it's better than than what we've got, and I hope the name won't become a joke like CFS has.

I was diagnosed at NIH over ten years ago, and it didn't seem to be hard for them to figure it out, even though at that time "fatigue" wasn't my principal complaint.

I wonder what the response to this is going to be outside of the US.

 

[Hip]

I agree with @SOC's view: if you had to choose just one of the myriad symptoms found in ME/CFS from which to construct a new name, then exertion intolerance, and its consequence PEM, are a good choice, because these symptoms uniquely define ME/CFS.

All the other symptoms of ME/CFS, miserable as they can be, are also found in other diseases.

But no name can ever capture ME/CFS, because this disease is really a barrage of horrible symptoms: fatigue, PEM, brain fog (which means memory problems, concentration problems, information processing difficulties, word retrieval problems), sound / light sensitivity, emotional lability, orthostatic intolerance, allergies, headaches, muscle aches / pain, joint pain, unrefreshing sleep, etc.

 

[Forbin]

I don't like SEID at all. The "Exertion Intolerance" part of SEID can easily be misconstrued as "lazy." This is a problem of perception that we already have--many in the medical profession already see us as nothing more than lazy.

Another way to cast this would be call it "Systemic Exertional Tolerance Disease," since it is a degradation of exertion tolerance, not intolerance. I don't think "Exertional Tolerance" could be misconstrued in the same way that you suggest "Exertion Intolerance" might.

Of course, SETD isn't a very good acronym either.

 

[Hope123]

A few thoughts:

1) If you have an illness and you getting treatment for it and experience relief, it does not mean you no longer have the illness. For example, people with diabetes/ heart disease take medications and some do very well on them -- doctors do not say these patients no longer have diabetes or heart disease and most patients understand that they still have these illnesses. The exception is a treatment CURES you of the illness. For example, you have pneumonia and after your course of antibiotics, which is then stopped, you feel fine despite not being on the medication.

2) If you are bedridden and unable to do anything, then you have problems with exertion. Exertion means any type of exertion -- it can be as mild as getting out of bed, brushing your teeth, etc. although it can mean more activity depending on the individual. Basically if you can't do what you did before or close to what a healthy person you age can do, you have problems.

3) The report is long but for those interested, there are specific sections on immunity and infection in Chapter 4. Also, Chapter 7, on making a diagnosis, includes how these factors can be used to help confirm or reinforce a diagnosis; look at the tables in Ch. 7.

 

[Sean]

But no name can ever capture ME/CFS,...

This.

I have some sympathy for the committee trying to come up with a name that is both accurate and acceptable, particularly given the poor quality evidence base. I think they are keenly aware of the naming problem, and I think some are a little too quick to dismiss it.

Also, please remember that they insisted that all this must be revisited within 5 years, to make sure it is kept up to date.

 

[beaker]

I agree with @SOC's view:
\
But no name can ever capture ME/CFS, because this disease is really a barrage of horrible symptoms: fatigue, PEM, brain fog (which means memory problems, concentration problems, information processing difficulties, word retrieval problems), sound / light sensitivity, emotional lability, orthostatic intolerance, allergies, headaches, muscle aches / pain, joint pain, unrefreshing sleep, etc.

How about "Barrage of Horrible Symptoms Disease"

Forgive me. I have to keep some sense of humor about all this.

 

[beaker]

SEID is undoubtable a step forward from CFS but then that was never going to be hard was it. The positive is that we have a clean slate in theory research wise, but as before we have no money for decent research. But the psychobabblers will be out in full force publishing away as furiously as they can to try and set themselves up as the experts in this 'new' disease. I worry about this because although a new name brings opportunity potentially, these guys are well practiced in manipulation and will be ready to take advantage and spin things.

The thing we really need if things are going to change for the better is a big chance in research funding from government for true biological research to take things forward, whatever the name. Without that, the name is kind of irrelevant.

{my emphasis}

This is my biggest fear. Name change and criteria change they throw out all the good research. And there is a lot. We just here more about the crappy stuff.
I'm too far gone to list. But stop and think about it. The 2 day exercise testing. Melle and Fluge's work, the Light's gene work, Klimas immune studies. They could all be erased. This is NOT good.

 

[Sean]

The 2 day exercise testing. Melle and Fluge's work, the Light's gene work, Klimas immune studies. They could all be erased. This is NOT good.

This work is not suddenly going to disappear. It will be used to inform new and hopefully better studies, as it should be.

 

[Sean]

How about "Barrage of Horrible Symptoms Disease"

Forgive me. I have to keep some sense of humor about all this.

BHSD

And how do we pronounce that ?

BaHStarD ?

I have Bastard's Disease.

Yes, we know, say all my family and friends.

 

[Hope123]

{my emphasis}

This is my biggest fear. Name change and criteria change they throw out all the good research. And there is a lot. We just here more about the crappy stuff.
I'm too far gone to list. But stop and think about it. The 2 day exercise testing. Melle and Fluge's work, the Light's gene work, Klimas immune studies. They could all be erased. This is NOT good.

All those studies are cited in the report. Look in the PEM and immune sections.

 

[WillowJ]

I agree with you and I guess I am trying to see if there is any bright side that can come from this? Also, is this name permanent or still up for discussion with the IOM committee? I am confused about that part.

I don't know of any mechanism to change recommendations at this point.

However, I don't think this name is meant to be permanent; just to skip away from the problems with the F name while we do more research and come up with a name that has enough large modern replicated studies of pathology behind it that the general medical community would accept the name as being accurate.

Though I really don't see the problem with ME, even if some people think it's not accurate because there is no rule that says an old name has to be accurate.

 

[Sean]

All those studies are cited in the report. Look in the PEM and immune sections.

Exactly.

Once again, can people please take the time to read the report in full.

The report is not perfect, but it is by far the best opportunity we have had in my 30 + years of sickness to move things forward. Pay it the due respect it deserves. If we go off half-cocked it will not serve our best interests. This is not the time for hasty reflexive responses based on past grievances, no matter how legit.

 

[CBS]

This work is not suddenly going to disappear. It will be used to inform new and hopefully better studies, as it should be.

@Sean - You're right about the work not disappearing (just because of a name change) but there will be significant questions about who that research applies to when an unvalidated set of diagnostic criteria are used.

Unvalidated diagnostic criteria might not be a huge issue from a clinical perspective (and then it again it may be a disaster if the diagnosis rates sky rocket because providers start diagnosing a lot of people without ME as having SEID, rendering the diagnosis meaningless). However, it will assuredly be a major issue when it comes to research.

The SEID diagnostic criteria has never been validated (think PACE trial, the Oxford criteria and how that study has been viewed given the known properties of the Oxford criteria - thanks to people like Lenny Jason). That's a huge problem for a criteria you are hoping will be universally adopted. My guess is that this is likely a deal breaker once folks start to appreciate the implications.

 

[Ecoclimber]

I don't like SEID at all. The "Exertion Intolerance" part of SEID can easily be misconstrued as "lazy." This is a problem of perception that we already have--many in the medical profession already see us as nothing more than lazy.

Ridiculous new name.

I repectively disagree.

"We just needed to put to rest, once and for all, the idea that this is just psychosomatic or that people were making this up, or that they were just lazy," Ellen Wright Clayton of Vanderbilt University. Dr. Clayton specifically stated that this is not a somataform disorder but a real biomedical disease!

Is it perfect, no but it can and must be improved upon with further research. However, this is an important fact to remember. This is the first time that a committee of researchers from a prestigious institution recognized this as a biomedical disease. Therefore, it cannot be labeled as a psychiatric disorder, pyschosomatic disorder or somatization disorder. Otherwise, medical practioners could be sued for malpractice. It is a foundation to build upon.

It is a complex medical disease that will generate further medical research and paves the way for future private/public funding. It allows for medical treatment and lab tests, not psychiatric treatments.

It allows patients to be treated under medical benefits provisions for diseases and allows for disability for medical not psychiatric reasons.

It's a step in the right direction. Research papers on the ME side are limited in scope so it could not support an ME designation to date...maybe later. Further research is required to determine if it is an immune dysfunction cause by one or more pathogens or an autoimmune disease.