Tuesday, February 10, 2015

BIG NEWS: New Name, New Criteria!

Well, friends and fellow sufferers, the good news is that we no longer have ME/CFS. The bad news is that we now have SEID: Systemic Exertion Intolerance Disease.

The IOM just announced the results of their efforts to review all the data and research and comb through input from patients and ME/CFS specialists. They have developed a new set of diagnostic criteria and a new name for our illness. Overall, this is fantastic news for all of us patients because with this new criteria comes a campaign to disseminate and inform doctors all over the country. I'm not in 100% agreement with what they came up, but it sure beats what we had.

The Name
Systemic Exertion Intolerance Disease (SEID). It's a mouthful. We finally got rid of the dreaded "f-word," so that's good news. And we've graduated from a Syndrome to a Disease - also good news, in terms of recognition and awareness.

However, I'm not thrilled that this new name still focuses in on just one symptom of our illness. Granted, it IS the central differentiating symptom (Post-Exertional Malaise or PEM), as opposed to fatigue which many illnesses and medical conditions share. However, I'm disappointed that the name is still focused on effects or symptoms rather than on what causes them. I do understand that the exact cause(s) of our illness are not yet fully understood, but experts and patients have known for many years that the basis of this illness is dysfunction in the immune, endocrine, and nervous systems. All symptoms stem from those dysfunctional systems. So, I would prefer one of the Neuro-Endocrine Immune type names that have been considered before.

The Criteria
For the record, we have never actually had official Diagnostic Criteria before, so this is a huge step forward. The criteria the CDC came up with years ago was meant to be used as research criteria.

Without further ado, here is the new SEID Diagnostic Criteria:


It doesn't seem to appear here (which is worrying), but in the presentation, they said there is an addendum that says something to the effect that these additional symptoms may be present:
  • Pain
  • GI problems
  • Sore throat and/or swollen glands
  • Headaches
  • Sensitivity to external stimuli
  • Certain infections can act as triggers
I am disturbed that this list doesn't seem to appear in the official written criteria - I had to go back to the presentation slides to find it.

I think it's great that PEM is now highlighted and required, as it is the single most defining and unique characteristic of our illness. I was also glad to see OI highlighted right in the criteria, not so much for diagnosis but to spread awareness that OI is an integral part of our illness (especially because it is one aspect that is treatable).

I am very disappointed to see that immune symptoms (sore throat, swollen glands, feeling feverish) weren't included because the sore throat was a critical factor for me in finally getting an accurate diagnosis - there were lots of conditions with fatigue but none of them included a sore throat. It was the one thing that told me right from the start that whatever I had was related to my immune system.

One highlight of the panel's conclusions is that co-morbidities no longer preclude a diagnosis of ME/CFS/SEID. In the CDC's 1994 version, if the patient had any other conditions (fibro, IBS, depression, etc.), then they were excluded - again, this is because that criteria was meant for use in research, not for diagnosis. This new criteria mentions common co-morbidities as a diagnostic & treatment tool for clinicians.

Dr. Rowe spoke specifically on pediatrics and explained that the information review they conducted for pediatric cases showed that this same criteria works equally well for children as for adults.

Dissemination
The next step - and perhaps the one that will impact patients the most - is to disseminate this new name and criteria and begin educating doctors across the U.S. The panel emphasized that one of their critical goals was that the criteria would be simple, easy to understand, and available so that ANY doctor, anywhere could use it - primary care doctors, pediatricians, ER doctors, etc. That would be amazing, wouldn't it?

Already today, both the Journal of the American Medical Association and the Annals of Internal Medicine have published announcements about the new criteria - wow! We haven't had that kind of mainstream medical coverage in...well, never. The committee will send the new criteria to all the medical professional organizations, as well as medical publications, in an effort to spread the word.

More Information
This IOM page includes links to detailed information on the new name and criteria.  Here are the Powerpoint slides of the announcement presentation I just watched live. Here is a brief summary report with the main criteria. See the IOM page for more information, including a diagnostic algorithm and key facts.

Is this possible? That a few years from now, regular doctors might be aware of our illness and recognize its signs and know how to diagnose it? Seems like a fantasy, but it could well come true.

Overall, I don't agree with everything the committee concluded, but all of this is a HUGE step forward for ME/CFS...ooops, SEID patients (that's going to take a little getting used to).


4 comments:

  1. Overall sounds good for the further recognition of SEID/ME/CFS. Then again, I wonder whether the new name will catch on as it's a mouthful and there are two names for it already. I can't read the criteria because I'm blind and they're in a picture, so I'll look them up.

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  2. Anonymous9:26 AM

    Sue, thanks for your insights, I was disappointed in the name as well. I am happy about the recognition, although it still feels paltry. Exertion intolerence? maybe if they consider going to the grocery store exertion, lol.

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  3. Nice to see some research right on the heels of the IOM report coming out. I am not thrilled with the new name either, nor the fact exertion intolerence is the one criteria being looked for. Let's hope the news of the report, which was widely covered, makes a big difference in research funding and respect from the medical community.

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  4. Colette11:13 AM

    Yeah exertion I tolerance indeed my orthostatic intolerance gives me panic attacks and I think I would do better with a wheelchair but as a young mother with a toddler in a buggy it's not an option as my hubby has to work and I'm alone alot. I'm in the uk and I wonder what that means for us here

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