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Poll: Do you have Myalgic Encephalomyelitis (ICC)

I fit the International Consensus Criteria (ICC) for ME

  • Yes

    Votes: 104 83.9%
  • Atypical ME

    Votes: 16 12.9%
  • No

    Votes: 4 3.2%

  • Total voters
    124

Martin aka paused||M.E.

Senior Member
Messages
2,291

Attachments

  • ICC_Questionnaire_Nov_2016.pdf
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Rufous McKinney

Senior Member
Messages
13,460
I did 45 years mild. I wonder how i would answer all this, back then. Did not have classic PEM.
Felt I would get "relapses" which I called chronic Eppstein Barr. It felt like I had mono again, and I'd get real rundown and that would last for a few weeks and then sort of return to- sort of OK/while messed up, once again.

So it was truely a shocker, when the whole thing intensified, I've got 99% of the list above.

Either I got another virus on top of the EBV, or __________.

I recall going to listen to a friends band. Out in the evening. I never had alot of energy "in the evening". Working full time, took most of it. Stood up for a few hours, bopping to the music, really enjoyed myself, Came home at 1 am.

I got sick for a good two weeks, could hardly do a thing.

No way wuold I be standing up, listening to a band, bopping for hours, any longer. So I did experience some big shifts after the worsening. Lots of neurology, the blood not returning, unable to process visual inputs etc.
 

Hip

Senior Member
Messages
17,949
The ICC are a further evolution of the CCC, and in general do not differ much from the CCC.

But the weird thing about the ICC is that you can be diagnosed with ME/CFS even without having any fatigue. Fatigue is not an obligatory symptom in the ICC. I wonder if that is a flaw in these criteria.

The other issue with the ICC is that the document goes beyond the known science. It provides mechanistic explanations for various ME/CFS symptoms. But we actually do not know the mechanism behind most ME/CFS symptoms with any degree of certainty. So the ICC is presenting hunches or guesses at symptom etiology, which is interesting of course, but may be proven wrong in future when we do finally understand what causes ME/CFS.


I think if you are trying to understand the CCC, which is still the most used research criteria for diagnosing ME/CFS (the IOM by contrast are clinical criteria), it is helpful to read both the CCC and ICC documents. If you read them both, you see that they are broadly similar, apart from the fatigue thing.
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
I did 45 years mild. I wonder how i would answer all this, back then. Did not have classic PEM.
Felt I would get "relapses" which I called chronic Eppstein Barr. It felt like I had mono again, and I'd get real rundown and that would last for a few weeks and then sort of return to- sort of OK/while messed up, once again.

So it was truely a shocker, when the whole thing intensified, I've got 99% of the list above.

Either I got another virus on top of the EBV, or __________.

I recall going to listen to a friends band. Out in the evening. I never had alot of energy "in the evening". Working full time, took most of it. Stood up for a few hours, bopping to the music, really enjoyed myself, Came home at 1 am.

I got sick for a good two weeks, could hardly do a thing.

No way wuold I be standing up, listening to a band, bopping for hours, any longer. So I did experience some big shifts after the worsening. Lots of neurology, the blood not returning, unable to process visual inputs etc.
But now?
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
The ICC are a further evolution of the CCC, and in general do not differ much from the CCC.

But the weird thing about the ICC is that you can be diagnosed with ME/CFS even without having any fatigue. Fatigue is not an obligatory symptom in the ICC. I wonder if that is a flaw in these criteria.

The other issue with the ICC is that the document goes beyond the known science. It provides mechanistic explanations for various ME/CFS symptoms. But we actually do not know the mechanism behind most ME/CFS symptoms with any degree of certainty. So the ICC is presenting hunches or guesses at symptom etiology, which is interesting of course, but may be proven wrong in future when we do finally understand what causes ME/CFS.


I think if you are trying to understand the CCC, which is still the most used research criteria for diagnosing ME/CFS (the IOM by contrast are clinical criteria), it is helpful to read both the CCC and ICC documents. If you read them both, you see that they are broadly similar, apart from the fatigue thing.
You misunderstood the intend of this poll. I want to know how many would have ME regarding this cafeteria. Not more, not less.
 

hapl808

Senior Member
Messages
2,178
I think I would've qualified for all this even when mild. My initial symptoms were more GI with lots of food sensitivities, but always had PEM, headaches, disturbed sleep (ironically now that I'm more severe my sleep patterns are better - partially because I don't do anything and have my house set up perfectly for just sleep), muscle weakness, unsteady gait, susceptible to infections, always feeling flu-like symptoms coming on, temperature sensitivity, etc.
 

Hip

Senior Member
Messages
17,949
You misunderstood the intend of this poll.

I appreciate the intent of the poll, and it's an interesting one.


But I am not sure if we can consider ICC as "the most narrow diagnostic criteria", given than with the ICC you can be diagnosed with ME/CFS without having any fatigue whatsoever.

But I forgot to actually quote your sentence, so it was not clear in my post what I was referring to.
 

5vforest

Senior Member
Messages
273
I have everything except PEM. I am constantly worried that I have either a) something similar to ME/CFS but also unknown to current medical science, and will not benefit from any future ME/CFS research, or b) some other undiagnosed condition that could be identified if I had better/more attention from doctors.
 

Rufous McKinney

Senior Member
Messages
13,460

Now I have very classic PEM. I"m moderate, so on OK days, I'm up in a chair. I move around the most in the evening.

I can do some light housekeeping/ wash a few dishes- go sit down. But as soon as I try to really walk very far, well I did sixty days to recover from walking around one block two days in a row (my personal GET experiment).

I have issues lying down which seem likely CCI related. I feel worse, if I lie my head back on a pillow for very long.

I have higher BP, which is my theory of why can sit up mostly.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
But the weird thing about the ICC is that you can be diagnosed with ME/CFS even without having any fatigue. Fatigue is not an obligatory symptom in the ICC. I wonder if that is a flaw in these criteria.

I believe that was intentional.
The reason why the word "fatigue" is problematic and is to be avoided is that it has no clear definition.

I have satisfied the ICC criteria for decades, but I don't have any "fatigue".
I have muscle weakness and cognitive dysfunction.

Healthy people, after a very long day of cognitive and physical work, can suffer from temporary muscle weakness and temporary cognitive dysfunction, which they colloquially refer to as "fatigue".

But this colloquial use of the word "fatigue" is inappropriate when talking about pathological muscle weakness or pathological cognitive dysfunction.
 

Pearshaped

Senior Member
Messages
580
I appreciate the intent of the poll, and it's an interesting one.


But I am not sure if we can consider ICC as "the most narrow diagnostic criteria", given than with the ICC you can be diagnosed with ME/CFS without having any fatigue whatsoever.

But I forgot to actually quote your sentence, so it was not clear in my post what I was referring to.
I appreciate the intent of the poll, and it's an interesting one.

But I am not sure if we can consider ICC as "the most narrow diagnostic criteria", given than with the ICC you can be diagnosed with ME/CFS without having any fatigue whatsoever.

But I forgot to actually quote your sentence, so it was not clear in my post what I was referring to.

If I understand it correctly, Fatigue - as in „sleepy“ didnt become a major symptom until „CFS“ was introduced.
There is a difference betw muscle fatigueability (sp), neurological and cognitive impairment and chronic fatigue.

[Wasnt there a study that confirmed that patients with MS were actually more fatigued than pwME ? ]

I think ICC Authors wanted to make sure that it will become clear that ME or ME/„CFS“ is not about being tired all the time and wanted to emphasize what is actually known and measureable.

Byron Hyde would highly likely, as much as he disagrees with authors from ICC, agree that :
A) Fatigue is not the main symptom of ME and must therefore not be present for a ME diagnosis, and
B] ICC comes closest to what he describes, and he has seen many many patients with this illness.
 
Last edited:

Rufous McKinney

Senior Member
Messages
13,460
diagnosed with ME/CFS without having any fatigue whatsoever.

Its hard to imagine how you could have:

flu like

impaired sleep

impaired digestion....

But no fatigue.


(anyone know the history of why No Fatigue is required here?)

RE: six months- I thought it was personally fascinating that i got MUCH WORSE, post massive stressors, such that almost exactly SIX MONTHS later I somehow had an almost different disease.

Two very severe gastroperesis events took place at month 4 and 6, from whence I seemingly have never recovered.
 
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