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IOM New proposed definition. What do you think?

nandixon

Senior Member
Messages
1,092
The problem for me is that the name they came up with doesn't convey sufficient medical or scientific seriousness and weight given how debilitating and life destroying this illness can be, and that problem can be easily rectified.

True ME/CFS (with PEM present), whether it's acute onset or gradual onset, almost certainly has to have, at a minimum, some type of immune component to it, so they could at least use terminology relating to at least that one aspect for the new name - even if it's true that other diseases have an immune component as well.

Otherwise, it's like calling multiple sclerosis "Systemic Nerve Signal Intolerance Disease." Or calling myasthenia gravis "Systemic Repetitive Motion Intolerance Disease." Or calling congestive heart failure "Systemic Narrow Artery Intolerance Disease." Etc, etc.

No name is going to be correct until they find the actual causes for this illness, but they can at least make it sound like a real illness and closer to the real nightmare it is for so many of us.

I proposed "Systemic Exertional Neuroimmune Disease" elsewhere to be as close as possible to the IOM name, and I don't care if it's that or something else, as long as it sounds like a real disease.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
It isnt mandatory but it says doctors should question the persons diagnoses if they dont have unrefreshing sleep. This will result in my diagnoses being questioned every time I see a doctor, it will make doctors doubt my diagnoses cause I dont fit the criteria well.. when in fact Im a clear ME patient.
You don't wake up feeling well, and full of energy, and on top of the world, do you? You wake up just feeling slightly better than when you went to bed. If you were comparing yourself with when you were well, you'd not describe your mornings as feeling 'refreshed'. You have an energy deficit in the evenings and you still have an energy deficit in the mornings. Also, significantly, you have said that when you're in a crash then you wouldn't wake up feeling refreshed, and doctors are supposed to look at our history, not just the immediate symptoms. The diagnostic criteria are a guide to assist making a diagnosis. Your history must be taken into account, and you've acknowledged that unrefreshing sleep is a feature of your illness when in a crash. So you do fit the criteria.

I don't think I would have included unrefreshing sleep as a core symptom, but the more I think about it, the more I realise that it might actually be a very helpful criterion for us, as we've discussed elsewhere.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
After a few days digesting the information I'm beginning to think that the new criteria are much better than the CCC.

In response to the new criteria, many people have been saying that they don't experience disturbed sleep, including myself, but the SEID criteria doesn't in fact require disturbed sleep. Yes, unrefreshing sleep is an unexpected criterion, but it is included in the CCC, as an example of 'sleep disturbance', so it's not entirely out of the blue. Anyone advocating for the CCC must recognise it.

Pain is a core symptom of the CCC, but many ME patients don't complain of pain per se. Many of us experience extreme discomfort but not sensations that we would specifically describe as pain. e.g. many of us don't have localised joint or muscle pain. The CCC would not have served all of us, in terms of pain being a requirement.

Except for the issue of unrereshing sleep, I've not heard anyone complaining that they would be excluded by the new criteria. But when we look at the sleep issue more closely it seems that it might prove to be a very helpful criterion. And I can't imagine anyone thinking that they would be excluded by that criterion, once we've had a chance to think it through.

Also, the POTS criterion will be a major benefit to a subset of patients, from my what I've read on this forum.

I'm beginning to think that the IOM have done a first-class job. Much better than I originally thought. Still digesting it though.

I wonder if all the knee-jerk negative reactions that have been posted all over the internet, before anyone could possibly have digested the information, are doing us all a massive disservice.
 
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Sidereal

Senior Member
Messages
4,856
@Valentijn, you're right, some of us have grown very careful, you could say paranoid, due to the psychobabblers twisting our every word. I think this is an understandable reaction to decades of abuse. Everything we say to doctors or researchers (excluding the good ones, of course) tends to get twisted to somehow fit a psychological interpretation.

I've had instances where dangerous problems caused by this disease were re-interpreted by later doctors as psychological. For instance, many years ago I went to the ER and they documented low potassium in the blood and an SVT on an EKG. I accidentally discovered 10 years later that some endocrinologist I saw months after that episode wrote in my chart that it was a panic attack. If I tried to purge this outright lie from my medical records, I would be viewed as crazy, obsessive and difficult.

I can only speak for myself but as a result of experiences like this I am quite paranoid (for the lack of a better word) about everything I write or say about this disease publicly and I find myself always doubting everything, excessively so, and coming up with every angle it could be attacked from by psychobabblers and trying to preempt that.

You're right, other complex multi-system diseases like lupus (which also has "systemic" in its name) have quite complex criteria and all the symptoms do not need to be present at the same time, obviously. But we're not lupus. This illness is still considered illegitimate by many and everything about it is held up to an impossibly high standard.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Naturally we understand where you're coming from @Sidereal.
I think @Valentijn is perhaps frustrated that we seem to be looking for reasons to pick this thing apart before we've had a chance to understand it in the round.
I share that frustration.
If it's a good set of criteria (and I'm increasingly thinking that it is), then it seems a shame to trash it because of our past experiences and general suspicion of government agencies etc.
There is a danger that it will get rejected if we don't get behind it, then we'll be back with CFS and Fukuda.
So I think we've all got to carefully consider is merits, in the round, and not make knee-jerk condemnations.
 
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beaker

ME/cfs 1986
Messages
773
Location
USA
@Bob, I think the criteria are good, about as good as it gets given the currently available evidence. I like that they're streamlined and don't feature all the unnecessary exclusions that CCC does. I've not trashed anything about this report except the name.
Yeah the name threw me off track too. Don't like it. But the "meat" of the report is good.
undecided about the criteria. I know the ME/CFS/SEid docs here in the US can dx the best. So I will be wondering about their response. Or maybe they are too familiar to see the "traps" the criteria has for the uninitiated.
I think the report speaks so much more to all of the illness. ( so many many symptoms and many they don't get to) It's like they need that background to properly investigate and dx.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@Bob, I think the criteria are good, about as good as it gets given the currently available evidence. I like that they're streamlined and don't feature all the unnecessary exclusions that CCC does. I've not trashed anything about this report except the name.
Sorry, I had meant to say that my post wasn't directed at you.. It was directed at our community in general.. Sorry not to make that clear.