Poll: Do you have Myalgic Encephalomyelitis (ICC)

[livinglighter]

I have everything but swollen neck lymph nodes. I've got some weird motor issues too. I get caught out at some underground stations as I cant descend large flights of continuous stairs. I lose my footing going down large paused escalators and spirliaing staircases. I have to hold on to the side rails for dear life, as I don't know where my foot is going. My brain can't process what my eyes and feet need to do after a while.

 

[wabi-sabi]

I sort of meet ICC criteria, depending on how much you fudge it. I certainly have GI symptoms, but not IBS. I have the gastroparesis thing instead. That means some foods don't sit well with me. But an intolerance to foods? Not really sure what that means apart from gastroparesis.

Honestly I find the ICC criteria more confusing than the CDC criteria because I think there's more room for fudge factor.

I definitely have PEM, fatigue, cognitive dysfunction and sometimes muscle problems.

Sleepiness isn't the same as fatigue, as Dr. Bateman has said somewhere ((although I can't find it now). I have sleepiness when my sleep has been extra bad, but that's a different thing from the ongoing grinding fatigue.

 

[wabi-sabi]

And give me an operational definition for post-exertional neuroimmune exhaustion already. Just fancy big word for fatigue and PEM as far as I'm concerned.

 

[wabi-sabi]

And "significant" pain? It's significant to me, but nothing compared to what people with fibro or RA go through. I'm going to need a more precise definition of significant.

 

[Wishful]

Interesting. I do fit, but as Wabi-sabi said, some fudging is required to meet C and D, but since those criteria aren't clearly defined or measurable, I can fit. I had some of those symptoms at some point in my ME, but not at present. I most definitely had PENE for the first 20 years, but managed to cure that, but still have all the other ME symptoms I had before that, so I definitely can't say that I cured my ME despite not meeting the PENE criteria at present.

I have everything except PEM. I am constantly worried that I have either a) something similar to ME/CFS

Since I've proven that it's possible to cure (or block long-term) PEM without changing the other symptoms, it seems reasonable that someone else could have whatever mechanism cures/blocks PEM. I needed cumin for 2 years to get that mechanism working, but maybe it's innate for some people (or maybe you really loved cumin in your meals for years ).

The ICC criteria probably fits at least 80% of people who have genuine ME, but it won't fit 100.0000% because people have individual biological quirks that could block or counter one or more symptoms that they otherwise would have.


I see that there is an option for 'atypical ME'. Since that's not defined, I think minor fudging fits me into "yes' rather than atypical for this poll.

 

[Rufous McKinney]

My neck has collapsed too

the right side of my whole body is more sick than the left, and the right side of my neck is unraveling and all the vertebrae are popping, but only the right side. This is a huge issue for hours at night, my neck wanting to go pop pop pop and it makes no sense to western medicine.

but its WIND pouring out, in chinese medicine. and it feels just like wind.

I've done the wind diet some, which emphasizes heavy bone broths. A huge dose of heavy collagen. With vegetables that disperse wind. So its mostly a dietary correction (root vegetables, cooked).

My joints got SO Much better when I ceased eating salads and "bitter greens".

 

[Martin aka paused||M.E.]

given than with the ICC you can be diagnosed with ME/CFS without having any fatigue

I don't have fatigue but all the other criteria. And now?

 

[ljimbo423]

I don't have fatigue but all the other criteria.

I find this really interesting! I do think it's possible to have many of the other symptoms but not have fatigue.

What symptoms are most disabling for you?

 

[Martin aka paused||M.E.]

I find this really interesting! I do think it's possible to have many of the other symptoms but not have fatigue.

What symptoms are most disabling for you?

PEM combined with extreme muscle weakness, sortness of breath, POTS, flu-like feeling, GI symptoms (always changing what), blurred vision, tinnitus... Much more
PEM is the main thing so everything is dependent in it's extremeness on it. So: PEM=weaker, feeling more I'll, tinnitus louder...

 

[Rufous McKinney]

I've got some weird motor issues too. I get caught out at some underground stations as I cant descend large flights of continuous stairs. I lose my footing going down large paused escalators and spirliaing staircases. I have to hold on to the side rails for dear life, as I don't know where my foot is going. My brain can't process what my eyes and feet need to do after a while.

Ive experienced some of that too. My visual issues contribute. As it makes processing inputs blurry and woozy and confused. I hold on to the railing quite dramatically.

Going up, I sometimes feel like I'll fall backwards at any moment. down is extra blurry- its a struggle with your footing, on uneven ground.

so the visuals for me hook into the brain and processing all that.

 

[Rufous McKinney]

I get caught out at some underground stations as I cant descend large flights of continuous stairs. I lose my footing going down large paused escalators and spirliaing staircases.

add: the body can't be relied upon. I can often get away with my one trip down the stairs, but teh day I do three I might get nailed, and if I just forget and stroll out with the trash, I could find myself paralyzed or suddenly my foot seizes up or a knee, or some other body part simply just stops working right then and there.

its so very strange, but happens.

 

[Wishful]

I find this really interesting! I do think it's possible to have many of the other symptoms but not have fatigue.

I don't think I ever considered 'fatigue' as one of my ME symptoms. I feel something sort of somewhat like fatigue, but I consider it definitely different from lack of sleep or overexertion.

 

[Martin aka paused||M.E.]

I don't think I ever considered 'fatigue' as one of my ME symptoms. I feel something sort of somewhat like fatigue, but I consider it definitely different from lack of sleep or overexertion.

Same. And I met a lot of pwME online who also are not fatigued. The term “Chronic Fatigue Syndrome” definitely does not resonate with me.

 

[lenora]

I don't think enough attention is given to other disorders that can cause the exact same symptoms as ICC. More will come along as time passes.

I've long been diagnosed with ME by 3 different professionals, in addition to neurological illnessses, some requiring surgery. Still, it wouldn't surprise me in the least to discover that I also have CCI. I think those who have had CCI surgery and leave their ME behind are the most blessed of people. I just know that I'm a very sick person.....and know it.

Yes, I also believe very much in the mind/body connection and the interplay involved in it. Really, so much of it stands to reason....you're going to feel worse if you have an argument with a loved one. Heavens, that would occur to a healthy person, except that it would be called a bad day. Yours, Lenora.

 

[Hip]

I don't have fatigue but all the other criteria. And now?

I don't think I ever considered 'fatigue' as one of my ME symptoms. I feel something sort of somewhat like fatigue, but I consider it definitely different from lack of sleep or overe

Really?! You guys don't feel either physically or mentally tired at all? Neither?

We all know what mental tiredness means, as even healthy people experience that after say a long hard hectic day. So in ME/CFS mental tiredness would be that sort of thing, but constantly present, even from the moment you wake up.

For me, I am very tired when I first get up, and after say 6 or 7 hours of being awake and doing minor activity at the computer, I can get a build up of more mental fatigue, such that I can no longer function well, and my mental performance on all tasks drops. But then if I have a midday siesta for 1 or 2 hours, I awake from the siesta more refreshed. I am still tired mentally after the siesta, but better than I was before the sleep. So the midday siesta is part of my strategy to cope with the mental fatigue.

The physical feeling of fatigue in ME/CFS, for me that often manifests as the so-called constant "molasses limbs" or heavy limbs feeling that is there whether or not you use your muscles, and the rapidity of muscle fatigue if I do anything physical.



Do you get brain fog?

 

[wabi-sabi]

For me, I am very tired when I first get up, and after say 6 or 7 hours of being awake and doing minor activity at the computer, I can get a build up of more mental fatigue, such that I can no longer function well

yes, this is something like what I feel. Exhausted all the time. And it is different from sleep deprived. I have that too. I just can't imagine not being fatigued at this point. I can't remember what not being tired all the time even feels like.

 

[Wishful]

Really?! You guys don't feel either physically or mentally tired at all?

Correct. When I do physical exertion long enough to feel 'tired', it feels quite distinct from my ME's 'vaguely fatigue-like' symptoms. It feels like healthy fatigue. There have been times when I don't want to use my muscles due to unusual achiness/malaise, but that's different from fatigue. Even when I have that symptom, it doesn't seem to limit what I could do with my muscles. I could force myself to dig soil for many hours; I just don't want to.

Cognitive fatigue is a bit more difficult to determine. When my ME is worse, I'll be reading and abruptly hit a limit where I'm staring at the lines and the words just aren't flowing into my consciousness normally. I don't know whether that's 'fatigue' of some sort or some other neural dysfunction.

I definitely get brain fog. I think that's my most annoying ME symptom.

 

[DrUniverse]

After years in this state one forgets how it is to feel normal . I have 24/7 lowkey Fatigue.

 

[Rufous McKinney]

Really?! You guys don't feel either physically or mentally tired at all? Neither?

I don't really understand the absence of "fatigue"...while dealing with this litany of symptoms.

is this a semantic problem?

how do you have unrefreshing sleep and that doesn't include a tired, fatigued, drained, morbibund whatever?

 

[Hip]

I just had a quick scan through the various ME/CFS diagnostic criteria, to see which require fatigue as an obligatory symptom for an ME/CFS diagnosis. The ME/CFS diagnostic criteria in bold text below require fatigue to be present.

• Ramsay definition 1986 — Talks about muscle fatiguability which takes days to recover
• CDC Holmes criteria 1988 — Requires debilitating fatigue or easy fatiguability (so if you do not have fatigue, but have easy fatiguability, then you can satisfy these criteria)
• Oxford criteria 1991 — Requires there to be disabling fatigue which affects physical and mental functioning
• London criteria 1994 — Requires muscle fatiguability and/or muscle weakness caused by minor activity
• CDC Fukuda criteria 1994 — Requires persistent or relapsing chronic fatigue that is not the result of exertion
• Canadian Consensus Criteria 2003 — Requires persistent or recurrent physical and mental fatigue
• CDC Reeves criteria 2005 — Requires severe fatigue
• Nightingale definition 2006 — Talks about loss of strength after activity
• NICE guidelines 2007 — Talks about persistent and/or recurrent fatigue, but not obligatory
• International Consensus Criteria 2011 — Talks about easy physical and mental fatiguability (lack of stamina)
• IOM Criteria 2015 — Requires fatigue which is not cause by excessive exertion

Five of these criteria (the ones in bold text) require persistent or recurrent fatigue to be present in order for patients receive an ME/CFS diagnosis.

The others do not require fatigue to be present, but require or talk about muscle fatiguability (lack of muscle stamina) even after minor exertion.