"The SEID Criteria: How do you like your porridge?" (March 14) by Tina Tidmore

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Tina writes, “The IoM committee took the approach of trying to find the disease features that are different in this disease from others. That is why they did not include myalgia or other pain.” By that standard, why did the Committee include other core symptoms: fatigue and impairment, unrefreshing sleep, cognitive impairment and orthostatic intolerance?

Tina agrees that neurocognitive impairment and autonomic dysfunction should be optional:
The neurocognitive is required in CCC but is optional in SEID.... I have seen some patients not recognize that they have neurocognitive dysfunction. This is discussed in "Osler's Web." So if a doctor asked, the person might say they don't have that problem. I didn't notice it until 2.5 years into my disease. I started making mistakes in my typing, making mistakes in adding up the bank deposit or in balancing my checkbook, unable to remember a phone number long enough to dial it. But when is it normal brain glitches, stress-induced or a symptom of a disease? It's hard to tell in the beginning. So making it a required symptom when many children with the disease don't have that symptom and many patients don't recognize they have it when they do could hinder making the right diagnosis.
The autonomic dysfunction is optional in SEID and CCC. I had this since I was 6, decades before I developed this disease. So it is a key feature for me. And in fact, a study that showed the high prevalence of orthostatic intolerance in CFS patients helped me know for sure I have CFS, when I developed the CFS symptoms later in life. The OI have caused fainting spells every couple of years when I was a child and two episodes as an adult. However, I went for a tilt table test last fall, and it showed normal. How could that be? Was it the French onion soup (fluid and salty) I had right before? Who knows. But I know if OI was a requirement for the disease as measured by a tilt table test, I would have not met the criteria at that moment. But that doesn't mean I don't have the disease. Maybe that's why IoM committee didn't make it required.
The problems that Tina describes remain, however, when either neurocognitive impairment or autonomic dysfunction is required.

Finally, Tina argues that PEM should be renamed:
I heard that PEM should be required; it is what defines our disease. So it's in there, as a requirement, just as patients said. But many still aren't happy...."Malaise" is no where near describing the headache, mental fog, fatigue, pain in lower limbs, hot and cold flashes and more that come from the activity or stressor.... "Malaise" can include sickness symptoms, but it's more vague and can include just not having motivation, being slow. It's not specific enough to describe what we have, which is like we're sick with some illness, an infection.... The ingredient of PEM needs to be improved. It's the wrong color. It's misleading and confusing.
Tina's criticism could be made of SEID itself: “It's more vague and can include just not having motivation, being slow. It's not specific enough to describe what we have which is like we're sick with some illness, an infection.... It's misleading and confusing.”