Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

[Ember]

There are two big diagnostic concerns. False positives, and false negatives. The video made it clear they were concerned with false negatives in existing definitions. Existing definitions under current medical education are failing abysmally. Even if SEID is not great, if it starts addressing this issue then it might still be justified.

Using the SEID criteria, I would have been a false negative for more than five years after I first started to experience PENE.

 

[Nielk]

I don't think Post-Exertional Neuroimmune Exhaustion would make much sense to a layperson.

I'm also not sure that the phrase "neuroimmune exhaustion" is justified: it sounds like something neuroimmune has been exhausted but I've no idea what that could be. Alternatively it's a neuroimmune-type of exhaustion but I don't think there is proof that this is the only type of neuroimmune exhaustion. Similarly I'm not sure even professionals would know what "post-exertional neuroimmune exhaustion" would know exactly how it might be and that what they had in their head would match what patients experience.

So it may have a value when spelled out but not sure if it is that good a phrase.

This explanation for PEM was authored by 26 experts who have cared for and researched multiple thousands of ME/CFS patients, including Klimans and Bateman.

 

[Dolphin]

I don't think Post-Exertional Neuroimmune Exhaustion would make much sense to a layperson.

I'm also not sure that the phrase "neuroimmune exhaustion" is justified: it sounds like something neuroimmune has been exhausted but I've no idea what that could be. Alternatively it's a neuroimmune-type of exhaustion but I don't think there is proof that this is the only type of neuroimmune exhaustion. Similarly I'm not sure even professionals would know what "post-exertional neuroimmune exhaustion" would know exactly how it might be and that what they had in their head would match what patients experience.

So it may have a value when spelled out but not sure if it is that good a phrase.

This explanation for PEM was authored by 26 experts who have cared for and researched multiple thousands of ME/CFS patients, including Klimans and Bateman.

A fascinating engagement in what I said ... not.

 

[geraldt52]

I always thought that PER, post exertional relapse, was a more easily understandable, maybe even more accurate, description of what goes on with us. I could never see a reason for not using it instead of PEM, which the average person doesn't really get.

 

[usedtobeperkytina]

Well, I disagree.

"Post" only means after. It doesn't indicate cause and effect. It's a sequence connection and does not indicate time or cause and effect relationship.
"Exertion" is not broad enough. Most consider exertion to be running a marathon or lifting weights. But for us, depending on the severity, it can be as little as folding clothes and sweeping the floor. And it doesn't include the other triggers.
"Malaise" can include sickness symptoms. But it's too broad. It can also include not feeling quite right, moving slowly or lack of motivation. It can be applied to psychological or physical.
"Exhaustion" is too narrow. There are many more symptoms besides exhaustion. Mental fog, headaches, body aches, etc.

"Sickness symptoms" are more clear. Everyone has been sick from a flu or cold. Or a stomach infection. They understand what being sick is like. It's more than just exhaustion and it does match what we have.

I know some have symptoms all the time. But some only have it from activity or another stressor. (If they were active every day, they would have it all the time.) Some have been able to limit having symptoms by eliminating the triggers. Some can't do that or are so severe that just sitting up in bed is a trigger. I get that.

I think there is a difference between sickness symptoms and sickness behavior. Behavior could be a choice. Symptoms of sickness are evidence of an illness, that the person is sick.

 

[usedtobeperkytina]

And I was not saying activity or stressor-induced sickness symptoms is all there is to the disease. I was saying that for the symptom of "post-exertional malaise," that part of the illness, I think it's bad terminology because some of the words are too broad and some too narrow and some aren't clear.

 

[Ember]

This explanation for PEM was authored by 26 experts who have cared for and researched multiple thousands of ME/CFS patients, including Klimans and Bateman.

The International Consensus Panel describes PENE as "a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions:"

Postexertional neuroimmune exhaustion (PENE pen′-e)

‘Malaise’– a vague feeling of discomfort or fatigue [41] – is an inaccurate and inadequate word for the pathological low-threshold fatigability and postexertional symptom flare. Pain and fatigue are crucial bioalarm signals that instruct patients to modify what they are doing in order to protect the body and prevent further damage. Postexertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport [42–46]. The normal activity/rest cycle, which involves performing an activity, becoming fatigued and taking a rest whereby energy is restored, becomes dysfunctional.

Numerous papers document abnormal biological responses to exertion, such as loss of the invigorating effects of exercise [20], decreased pain threshold [47–49], decreased cerebral oxygen and blood volume/flow [50–53], decreased maximum heart rate [54], impaired oxygen delivery to muscles [55], elevated levels of nitric oxide metabolites [56] and worsening of other symptoms [57]. Patients reach the anaerobic threshold and maximal exercise at a much lower oxygen consumption level [58]. Reported prolonged effects of exertion include elevated sensory signalling to the brain [59] that is interpreted as pain and fatigue [29], elevated cytokine activity [60], delay in symptom activation [61] and a recovery period of at least 48 h [57]. When an exercise test was given on two consecutive days, some patients experienced up to a 50% drop in their ability to produce energy on the second evaluation [62]. Both submaximal and self-paced physiologically limited exercise resulted in postexertional malaise [48].

As the cardinal feature of ME (ICC), PENE precedes the other criteria: neurological impairments, immune impairments and energy metabolism/ion transport impairments.

 

[SOC]

Should I stay quiet from now on and stifle my opinions on this forum?

No, you should state your opinions and accept that not everyone is going to agree with them. No one is asking you not to state your opinion. As far as I've seen no one ever has. People have disagreed with you, as they are perfectly entitled to do. Their opinions shouldn't be stifled just because they don't agree with yours. People shouldn't be accused of bullying or trying to stifle you just because they disagree with you. There's no rule at PR that everyone has to agree.

Please, continue to express your opinion. It's important for everyone to see all sides. Just remember that just because you can state your opinion, it doesn't necessarily mean that it's going to be a popular opinion, or that other people won't express conflicting opinions in turn. It is your opinion, and as such has value. It is not everyone's opinion.

 

[alex3619]

I always thought that PER, post exertional relapse, was a more easily understandable, maybe even more accurate, description of what goes on with us.

I prefer PER as well. PENE also has the issue of what it means in Spanish.

 

[alex3619]

The International Consensus Panel describes PENE as "a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions:"

Though the 2 day CPET has limited clinical usefulness, one thing it does very well is validate the existence of PENE or PEM because we know there is a major incapacity to generate energy. Its also well known that nerve tissue is highly vulnerable to low energy.

 

[Gamboa]

I thought this briefing was fantastic!!

I think we need to group together and not split even further apart. For those who feel that the IOM report does not represent their interests, we have to start somewhere. The more money and recognition that can be raised for ME, CFS or SEID research the better. That will lead to further understanding of the disease or diseases or subsets. ME might very well be split from SEID and there most likely will be new names (hopefully) for the disease or diseases.

In addition, most people without CFS, ME, SEID don't notice any of the controversial aspects that we in the ME/CFS world see and debate. And that is a good thing.

 

[Gamboa]

I think that's the view that I've come to now. I think we should run with this report, use it for a massive advocacy effort, and make the most of the momentum. I think the significance of the report has massive potential in terms of getting our illness taken seriously by government agencies, health authorities, medical professionals and the public. The criteria aren't perfect, and important issues are missing from the recommendations, but we can work towards fine tuning the criteria over the next few months and years, by which time more research will have been published. In the mean time, the report is a solid, robust and authoritative validation of our illness, in my opinion.

To be honest, I think our community has been behind the curve in realising the significance and potential of this report. I think this is because we were so sceptical of, and resistant to, the process, that we couldn't welcome it with open arms; we had to carefully and cautiously assess it and its potential implications. Now I think we need to move forwards and start to organize positive advocacy efforts.

For those who want the ICC adopted, I'm sympathetic to your needs, but I've come to the view that the advocacy efforts against the IOM report are counter productive, at the current time. If you advocate for the ICC to be adopted alongside the IOM criteria (rather than instead of), then I'm with you, otherwise I can't support your efforts. That's just my view of course.

Well said, Bob. Now is the time to group together and move forward, not split even further apart. The momentum is with us. Let's use it !

 

[Ember]

ME might very well be split from SEID and there most likely will be new names (hopefully) for the disease or diseases.

Have ME and SEID been conflated? Dr. Bateman commented, “I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria.”

Does Dr. Clayton's statement stand now in contradiction? She recommends, "If people meet the criteria for this disorder, they ought to be given the diagnosis and not another diagnosis."

 

[alex3619]

ME might very well be split from SEID and there most likely will be new names (hopefully) for the disease or diseases.

Actually I think SEID is an ME definition, its not hugely different from the CCC except in ways that will alter the sensitivity and specificity. The question is whether or not its a good ME definition. Hence the need for some studies.

 

[Ember]

Actually I think SEID is an ME definition....

Where does the IOM Committee propose that SEID should appear in ICD-10-CM? Dr. Clayton remains silent on the matter:

If people meet the criteria for this disorder, they ought to be given the diagnosis and not another diagnosis. They need to be given this diagnosis and that there needs to be um...a change in the ICD-10 to reflect this diagnosis. I realize that this is something for the actions of others to take care of but one that's actually very important in this setting.

 

[alex3619]

Where does the IOM Committee propose that SEID should appear in ICD-10-CM?

ICD doesn't concern me. Its just a bureaucratic code, of no scientific merit. The quality of the definition is what is important. Its not been tested. Its relying on unpublished data that has not been peer reviewed. Panel members are involved in one of those studies, the CDC multisite study. Jason's suggestions on severity have been incorporated, but we have no idea what the final outcome of that will be, only an educated guess.

They may be completely right, in which case we have an even better definition than before. However that is not how science works. Relying on unpublished unreviewed data is not good science. We need some real studies. We need the CDC multisite study to publish. We need science, not review.

This could be the best thing we have ever had done. Or a colossal mistake. My position is lets find out sooner rather than later.

 

[Ember]

ICD doesn't concern me.

ICD-10-CM concerns others. Why does the IOM Committee make no recommendation with respect to the placement of SEID in ICD-10-CM? Dr. Clayton acknowledges that the issue is “actually very important in this setting.”

 

[Kati]

Actually I think SEID is an ME definition, its not hugely different from the CCC except in ways that will alter the sensitivity and specificity. The question is whether or not its a good ME definition. Hence the need for some studies.

i bet Dr Jason is already on it.
i don't think it's something we need to worry about very much.

What patients can and should do is leverage the report to ensure appropriate response happens from Hhs, not further delays and stalling

 

[Ember]

i don't think it's something we need to worry about very much. What patients can and should do is leverage the report to ensure appropriate response happens from Hhs, not further delays and stalling

You're recommending a pig in a poke.

 

[alex3619]

i bet Dr Jason is already on it.

Yes, I would not take that bet ... OK, maybe if it was peanuts to donuts I would.