The IOM clinician's guide is out

[anniekim]

These symptoms are among my very most debilitating, all day every day going on seven years - though they were even far, far more extreme at onset.

I end up in the same place, so to speak, following physical activity or cognitive activity (which can include exposure to light and sound - neurosensory disturbance / sensory impairment) or any combination of the two.

I believe neurosensory disturbance / sensory impairment has been important enough to be included in CCC and ICC.

Mango, above, wrote:

And this is what struck me as well - that neurosensory disturbance / sensory impairment should have been included here. / Edit: Though maybe it should have been (if not) fleshed out more in descriptions of cognitive difficulty.

I have had M.E for 16 years, severe for last ten (now bedridden 24/7), even when moderate my inability to cope with sensory input has always been very prominent, now it is incredibly disabling, though appreciate I am severely affected. My noise sensitivity is extreme, can't even bear sound of my own central heating, I am very touch sensitive too and even observing movement can make me feel ill.

I too would have liked to have seen it mentioned after intolerances to foods, chemicals etc. I appreciate people sharing they don't have it but I have spoken to many many people who do. Like all my symptoms, PEM from physical and mental activity makes it even worse but overexposure to sensory input can also trigger PEM in me

 

[SOC]

I think some people are missing the point that a diagnostic criteria is not supposed to list all the possible symptoms a patient can have; it's supposed to describe the minimal universal conditions needed to identify a patient.

Understanding the full impact of the illness and the full gamut of potential symptoms is an entirely different process. It has to be part of a major medical education campaign, not the diagnostic criteria.

Yes, many of us have sensory sensitivities, but many don't. Many of us have severe pain, but many don't. And so on. Those kinds of symptoms cannot be in the diagnostic criteria because if they were, not having sensory sensitivity or severe pain would eliminate legitimate patients from the diagnosis -- very dangerous for most of us.

What is universal in our illness? PEM and symptoms that are not relieved by a good night's sleep. Do we all have other symptoms as well? Hell, yes! That is not being ignored in the IOM report. It's just not necessary to make a diagnosis. The other symptoms come into play when we start talking about treatment. Then it has to be clear they we have very, very many other serious symptoms that need to be recognized and treated.

 

[alex3619]

I think some people are missing the point that a diagnostic criteria is not supposed to list all the possible symptoms a patient can have; it's supposed to describe the minimal universal conditions needed to identify a patient.

Agreed, and I wish this were being addresed more in the debate. Symptoms which are not core are important for understanding, and if treatable then for treatment, but are diagnostically unimportant.

The question that needs addressing, is are the existing symptoms sufficient, too strict, too lenient etc. Yet I wonder if we are even in a position to answer that properly in any way that is not highly speculative.

Which comes back to a point I have made three times how: we need a formal study putting the SEID definition head to head with CCC, ICC and Fukuda so we can clearly see the differences. Which will take many months to do even after someone starts it. I really wish that the IOM had been commission to run such a study on any new definition. Its needed before the definition can be rolled out with some assurance of quality.

I do suspect, as I have said previously, that some of the evidence that is driving this is as yet unpublished from the multisite CDC study.

 

[medfeb]

To

I have had M.E for 16 years, severe for last ten (now bedridden 24/7), even when moderate my inability to cope with sensory input has always been very prominent, now it is incredibly disabling, though appreciate I am severely affected. My noise sensitivity is extreme, can't even bear sound of my own central heating, I am very touch sensitive too and even observing movement can make me feel ill.

I think some people are missing the point that a diagnostic criteria is not supposed to list all the possible symptoms a patient can have; it's supposed to describe the minimal universal conditions needed to identify a patient.

To me, this looks like a gap in the IOM SEID criteria that needs to be added to the "list of other symptoms" in the criteria. Currently, that list includes pain, history of prior infection and immune abnormalities but oddly not these kinds of neurological symptoms. Hard to know what happened, but the neurocognitive evidence review seems to have focused on the cognitive part and these kinds of neurological symptoms got lost.

If it were put there, I think it would help doctors understand the breadth and severity of the disease without affecting the minimal universal conditions.

 

[anniekim]

I do appreciate the core criteria are to capture universal symptoms as much as possible, but I do believe sensory overload is pretty common and I would have liked it in the additional symptoms section next to sensitivities to food, chemicals.

Also, I appreciate that not everyone is severe but I do feel the guide says very little about the severely affected and could have done a bit more.

 

[dean]

Comments limited to the "Clinicians Guide" re diagnosis. Not a bad start esp since the greatest need has been to convince clinicians that ME/CFS is a severe, systemic, idiopathic physiologic dysfunction, meaning of unknown origin. Beyond that, since this is chapter is to help clinicians make a diagnoisis, the guide should have included a list of other diseases that that need to excluded as part of any workup, as well as the specific blood tests that every patient should have before the diagnosis can be made.

The current flow chart makes it seem that the diagnosis can be made with only a medical history. Given the current state of knowledge our thing is a diagnosis of exclusion. Again, since this chapter is addressed to clinicians, it should make clear, in a prominent way, what conditions need to be excluded and the tests required to do so .

However the report makes it very clear that our thing is a real disease and should not be dismissed as a wastebasket diagnosis which had often been the case. This is a huge step forward, ie getting that concept out there to the medical community. In that regard the report is a sucess. The details of what is required for a diagnostic workup need more work

Other parts of the report make it clear that other diseases have to be excluded. However this is not suffciently delt with in the clinicians guides.

 

[Kati]

I have had M.E for 16 years, severe for last ten (now bedridden 24/7), even when moderate my inability to cope with sensory input has always been very prominent, now it is incredibly disabling, though appreciate I am severely affected. My noise sensitivity is extreme, can't even bear sound of my own central heating, I am very touch sensitive too and even observing movement can make me feel ill.

I too would have liked to have seen it mentioned after intolerances to foods, chemicals etc. I appreciate people sharing they don't have it but I have spoken to many many people who do. Like all my symptoms, PEM from physical and mental activity makes it even worse but overexposure to sensory input can also trigger PEM in me

Hi @anniekim you make an interesting point, that many patients are very sensory, drug and chemical sensitive, and perhaps it is associated with the severity OR not.

While the IOM committee could not comment on subsets due to the lack of research in that regard, it could be very possible that you are describing an important subset of the disease that needs recognition.

 

[Folk]

I wonder...

If PAIN is common in ME/CFS, why do they consider Fibromyalgia as a comorbiditiy?

 

[Ren]

As stated earlier, CCC and ICC diagnostic criteria include neurosensory disturbance (sensory impairment). So, what do the ME experts who wrote and/or support CCC and/or ICC think about this change?

And again, recognition/validation of these neurosensory disturbances affects an individual's rights.

 

[A.B.]

I wonder...

If PAIN is common in ME/CFS, why do they consider Fibromyalgia as a comorbiditiy?

Because fibromyalgia appears to be biologically distinct from SEID.