SEID vs CFS vs ME

[PhoenixDown]

Can you please explain the difference between ME and CFS? Are there different diagnostic tests? Different treatments? Different ICD10 codes?

I said Chronic Fatigue not CFS. If studies use overly broad criteria that include anyone who is tired then it compromises the validity of those trials. The name CFS is too easily conflated with fatigue as you have just demonstrated.

I believe that true ME should be defined as those who have an adverse reaction to exercise or exertion.

Certainly though we may find in future that ME/CFS has subsets with different disease pathophysiologies.

I agree, even with strict criteria ME is not one illness.

 

[Learner1]

I said Chronic Fatigue not CFS. If studies use overly broad criteria that include anyone who is tired then it compromises the validity of those trials. The name CFS is too easily conflated with fatigue as you have just demonstrated.

You linked to the Japanese study, which has myalgic encephalomyelitis/chronic fatigue syndrome in its name and, in the Methods section, said:

"Nine patients who fulfilled the international diagnostic criteria for CFS (12) and ME (13) were recruited from the Fatigue Clinical Center at Osaka City University Hospital, Osaka, Japan."

As @Hip already pointed out, they used recognized ME/CFS criteria to identify these patients, so this was not just chronically being tired, which is different than ME/CFS.

I believe that true ME should be defined as those who have an adverse reaction to exercise or exertion.

Well, that's leaving a lot of important detail out. There are people who do not always have an adverse reaction to exercise or exertion who do have ME/CFS.

 

[Hip]

Well, that's leaving a lot of important detail out. There are people who do not always have an adverse reaction to exercise or exertion who do have ME/CFS.

That might be the case, especially in milder levels of ME/CFS, but ME/CFS diagnostic criteria are increasingly moving to have PEM as an obligatory symptom. CCC and ICC require PEM, and the IOM criteria require PEM.

 

[PhoenixDown]

"Nine patients who fulfilled the international diagnostic criteria for CFS (12) and ME (13) were recruited from the Fatigue Clinical Center at Osaka City University Hospital, Osaka, Japan."

Ah, thanks. They should really mention that in the abstract. I couldn't see the full version in Hip's original link. The CDC 1994 criteria should be dropped from ME research as it's not specific enough.

 

[Learner1]

That might be the case, especially in milder levels of ME/CFS, but ME/CFS diagnostic criteria are increasingly moving to have PEM as an obligatory symptom. CCC and ICC require PEM, and the IOM criteria require PEM.

Well, what happens if someone is getting better, and still has done symptoms but not all, after having had it for several years? Does the fact that PEM is not 100% disqualify them from the diagnosis, and should they stop all treatment if every bit of the criteria doesn't apply anymore? That might cause someone to reverse their progress.

 

[PhoenixDown]

Well, what happens if someone is getting better, and still has done symptoms but not all, after having had it for several years? Does the fact that PEM is not 100% disqualify them from the diagnosis...

If they no longer have PEM or exertion intolerance they should be re-diagnosed with post-ME syndrome (or post-SEID). Treatment should continue if it helps.

 

[leokitten]

@nanonug I thought diseases/disorders aren’t necessarily classified as e.g. neurological based on etiology or pathophysiology, but based on the primary symptoms when we do not have evidence of the former? Many diseases/disorders we have little understanding, though they still get classified. For that reason I feel it is mostly apt to classify ME as neurological or neuroimmune disorder more than any other medical classification.

 

[Learner1]

If they no longer have PEM or exertion intolerance they should be re-diagnosed with post-ME syndrome (or post-SEID). Treatment should continue if it helps.

There is no such thing as post-ME syndrome. Or do you know the ICD10 code for that?

If one is a cancer patient, one can graduate to a status of NED, "no evidence of disease," but no one denies that the patient has had cancer, as it is very possible for it to return.

 

[Stretched]

I just reread this thread and was once again left miffed with doctors… . When I convey to a doctor that I have CFS (by any moniker) and s/he replies “oh, yea, I get that, too,” I know a bumpy ride is in the offing, or the end is near!” However, before the ensuing clarification I do respond “no, the real kind… .”
Oh, my days!

 

[Judee]

When I convey to a doctor that I have CFS (by any moniker) and s/he replies “oh, yea, I get that, too,” I know a bumpy ride is in the offing, or the end is near!” However, before the ensuing clarification I do respond “no, the real kind…

I understand. I've changed my opinion on this since I posted a couple years back. Now I always call it ME/CFS because I've come to realized a lot of people think CFS is just feeling tired and although extreme fatigue (but as you said, "...the real kind...") is definitely part of this, the actual disease is so much more than that.

 

[Rufous McKinney]

s/he replies “oh, yea, I get that, too,”

My neighbor here mentioned her fibromyalgia evaporated when she "had to take care of her son" after he became disabled. As if she just turned it off due to the demands/circumstances.

 

[Judee]

As if she just turned it off due to the demands/circumstances.

Sigh...yeah. I mean don't they think if we could just flip a switch we would?



And this is to me again, an indication that fibromyalgia as horrible as it is, is not the same as ME/CFS.

 

[Stretched]

My neighbor here mentioned her fibromyalgia evaporated when she "had to take care of her son" after he became disabled. As if she just turned it off due to the demands/circumstances.

Pragmatically, I would take a psychiatric diagnosis IF the attendant protocol would mitigate the CFS Condition. FWIW, I went through therapy on/off for 25 years and examined the emotional elements. In the end, stress (of different sorts) was about the most likely of causative or ongoing factors.