The ME (ICC) vs CFS (Fukuda) Diagnosis Poll

[jimells]

I could barely comprehend the ICC critirea, so I guess that is evidence of neurocognitive problems???

Anyway, as far as I could tell I qualify for both, but it doesn't matter. After eight years I still don't have a diagnosis, it doesn't look like I will ever get one.

I asked the doctor today if she believed CFS was a real disease. She said no. As you can imagine, our discussion rapidly went downhill from there! It ended with each of us firing the other. She said the tests she ordered don't show anything wrong, so there isn't anything wrong - I just need a psychotherapist and exercise. She got extremely indignant when I asked for a cardio stress test, VO2 max, etc. Her patients are not allowed to ask for tests. What an arrogant, ignorant attitude!

 

[Cort]

I could barely comprehend the ICC critirea, so I guess that is evidence of neurocognitive problems???

Anyway, as far as I could tell I qualify for both, but it doesn't matter. After eight years I still don't have a diagnosis, it doesn't look like I will ever get one.

I asked the doctor today if she believed CFS was a real disease. She said no. As you can imagine, our discussion rapidly went downhill from there! It ended with each of us firing the other. She said the tests she ordered don't show anything wrong, so there isn't anything wrong - I just need a psychotherapist and exercise. She got extremely indignant when I asked for a cardio stress test, VO2 max, etc. Her patients are not allowed to ask for tests. What an arrogant, ignorant attitude!

Sorry you had to go through that...you are obviously not alone!

 

[Boule de feu]

I could barely comprehend the ICC critirea, so I guess that is evidence of neurocognitive problems???

Anyway, as far as I could tell I qualify for both, but it doesn't matter. After eight years I still don't have a diagnosis, it doesn't look like I will ever get one.

I asked the doctor today if she believed CFS was a real disease. She said no. As you can imagine, our discussion rapidly went downhill from there! It ended with each of us firing the other. She said the tests she ordered don't show anything wrong, so there isn't anything wrong - I just need a psychotherapist and exercise. She got extremely indignant when I asked for a cardio stress test, VO2 max, etc. Her patients are not allowed to ask for tests. What an arrogant, ignorant attitude!

It just shows that she knows nothing about this condition... =-(
Can you see another doctor who does believe in it and could give you a CFS diagnosis?
Maybe you should have asked her if she knows what ME is (instead of CFS).
Then she would have rushed to her computer! ;-)
It seems that 8 years is a long time. I got mine after one year and I thought it was too long!
Best of luck to you. Don't give up!

 

[eric_s]

I could barely comprehend the ICC critirea, so I guess that is evidence of neurocognitive problems???

Anyway, as far as I could tell I qualify for both, but it doesn't matter. After eight years I still don't have a diagnosis, it doesn't look like I will ever get one.

I asked the doctor today if she believed CFS was a real disease. She said no. As you can imagine, our discussion rapidly went downhill from there! It ended with each of us firing the other. She said the tests she ordered don't show anything wrong, so there isn't anything wrong - I just need a psychotherapist and exercise. She got extremely indignant when I asked for a cardio stress test, VO2 max, etc. Her patients are not allowed to ask for tests. What an arrogant, ignorant attitude!

Just don't go to see that kind of a doctor... After all it's you who pays the bill. Luckily enough we live in coutries where you are free to choose your doctor.

 

[eric_s]

At the moment, i think i would not meet the ICC, because i don't have at least 3 symptoms out of 3 or more different categories in "Immune, Gastro-intestinal & Genitourinary Impairments". Without that requirement, i would fit. In the first couple of years of being ill i would have met the ICC, but now not anymore.

I would still fit Fukuda at this point.

I'm pretty sure i have the same illness as what is described by the ICC though, because it's very similar and i would have fulfilled the criteria earlier. But if symptoms have to be present at the moment of making the diagnosis, then i would of course not say i have ICC-ME. It's important to keep the cohort "clean". Probably if i would not have been able to live a lifestyle with enough sleep and rest and would not have paced myself well over the years i would still have the symptoms required. Only a doctor should make a diagnosis anyway, of course.

I agree that for research they should use strict criteria like the ICC and probably it would be best for the scientific community to agree on one set of criteria. So i hope everybody will adopt the ICC.

For clinical use, i think they should give people like me a diagnosis of "atypical ME", if the criteria allow for that, or then a diagnosis of Fukuda-CFS.

 

[Bob]

At the moment, i think i would not meet the ICC, because i don't have at least 3 symptoms out of 3 or more different categories in "Immune, Gastro-intestinal & Genitourinary Impairments". Without that requirement, i would fit. In the first couple of years of being ill i would have met the ICC, but now not anymore.

I would still fit Fukuda at this point.

I'm pretty sure i have the same illness as what is described by the ICC though, because it's very similar and i would have fulfilled the criteria earlier. But if symptoms have to be present at the moment of making the diagnosis, then i would of course not say i have ICC-ME. It's important to keep the cohort "clean". Probably if i would not have been able to live a lifestyle with enough sleep and rest and would not have paced myself well over the years i would still have the symptoms required. Only a doctor should make a diagnosis anyway, of course.

I agree that for research they should use strict criteria like the ICC and probably it would be best for the scientific community to agree on one set of criteria. So i hope everybody will adopt the ICC.

For clinical use, i think they should give people like me a diagnosis of "atypical ME", if the criteria allow for that, or then a diagnosis of Fukuda-CFS.

Do you meet the requirements for ICC 'atypical ME' eric?

Cort did not include this category in his survey, but it's a very important part of the ICC.

 

[Bob]

I think it's very important to make everyone aware of the 'atypical ME' diagnosis that the ICC provides for patients who don't meet all the criteria for the standard 'ME' diagnosis.

I think that this alternative 'atypical ME' diagnosis in the ICC, makes a huge difference to our community, compared with purely having the primary diagnosis of 'ME'.

If you meet the criteria for 'post-exertional neuroimmune exhaustion', and meet at least two of the other symptoms that are listed in the ICC (but you don't meet the full criteria for 'ME'), then it gives you a diagnosis of 'Atypical ME'.

Definition of Atypical Myalgic Encephalomyelitis from the ICC:

Atypical Myalgic Encephalomyelitis: meets criteria for post-exertional neuroimmune exhaustion but has
two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

 

[eric_s]

Do you meet the requirements for ICC 'atypical ME' eric?

Cort did not include this category in his survey, but it's a very important part of the ICC.

Thanks, Bob. I had the term "atypical ME" in my mind from somewhere, but didn't take the time to go and read again how it's defined. Too busy at the moment.

If i understand it correctly, i would have "atypical ME" according to the ICC, beacuse i fulfill all the requirements, except for "Immune, Gastro-intestinal & Genitourinary Impairments". In this group at the moment i only have "1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation", but you need to have at least one symptom out of 3 different categories in that group.

But until a doctor has given me that dx, i think i will go with "CFS", even though i don't like it.

 

[eric_s]

two or less than required of the remaining criterial symptoms

I never really understood what they mean with that. Maybe there would be a clearer way of formulating this. Or is it just me?

 

[Bob]

two or less than required of the remaining criterial symptoms

I never really understood what they mean with that. Maybe there would be a clearer way of formulating this. Or is it just me?

It is written very badly eric.

It means at least two of the symptoms that they have listed, but less than the required symptoms for the standard ME diagnosis.

Unless I've misunderstood it.

 

[eric_s]

My feeling is that only 2 symptoms without further requirements (what category they belong to) would not be enough, because for a diagnosis of ME you would need at least 7 out of 7 different categories across 3 groups. Atypical ME would then probably be less specific than Fukuda-CFS. Could it mean that you need two or less symptoms less than the required number? So you would have 5 or 6 symptoms spread out over the 3 groups in such a way that if you added 2 symptoms you would fulfill the criteria? I hope they will clarify this in the final version.

 

[Bob]

Could it mean that you need two or less symptoms less than the required number? So you would have 5 or 6 symptoms spread out over the 3 groups in such a way that if you added 2 symptoms you would fulfill the criteria? I hope they will clarify this in the final version.

I don't think that can be it eric, because the wording doesn't seem right.

My feeling is that only 2 symptoms without further requirements (what category they belong to) would not be enough, because for a diagnosis of ME you would need at least 7 out of 7 different categories across 3 groups. Atypical ME would then probably be less specific than Fukuda-CFS.

That's an interesting point. I hadn't thought about comparing the 'atypical' diagnosis with fukuda.

I think it's purposely done to be inclusive. Whether that's a good thing, or not, I think would involve a very long discussion, and much disagreement!

 

[eric_s]

It might be a good thing, because it allows for a strict definition that will produce a good cohort for research, but at the same time doesn't leave atypical cases or people less severly affected out in the rain. But as you say, this is for the professionals to discuss and most probably they won't all agree...

 

[WillowJ]

My feeling is that only 2 symptoms without further requirements (what category they belong to) would not be enough, because for a diagnosis of ME you would need at least 7 out of 7 different categories across 3 groups. Atypical ME would then probably be less specific than Fukuda-CFS. Could it mean that you need two or less symptoms less than the required number? So you would have 5 or 6 symptoms spread out over the 3 groups in such a way that if you added 2 symptoms you would fulfill the criteria? I hope they will clarify this in the final version.

Isn't it PENE plus two? In theory, PEM/PER/PENE should be fairly restrictive all by itself. Certainly we could discuss refining the description of that, though.

I would think we would want to require one of the additional symptoms to come from either B1 or B4, however.

html ICC for convenience

 

[Bob]

Isn't it PENE plus two?

Ah, perfect wording...

why can't I write things that simply?!?!?

Thanks Willow.

 

[Ember]

It might be a good thing, because it allows for a strict definition that will produce a good cohort for research, but at the same time doesn't leave atypical cases or people less severly affected out in the rain.

Whether or not the ICC produces that better cohort for research than Fukuda won't be determined by this poll though. I'd expect there to be many people in the first category: CFS according to the Fukuda Definition (1994) but not the ICC for ME. But they'd mostly be higher functioning than those of us voting here. And they're the ones we want excluded from the studies.

 

[OverTheHills]

Atypical ICC

Hi All,

I consider myself to have atypical ME, as I have PENE plus
B1 -neurocognitive impairment
B3 Sleep impairment
C1 recurrent flulike symptoms
C3 GI problems
C5 sensitivities
D1 orthostatic intolerance
D3 loss of thermostatic stability

So I do not meet ICC as I have only 2/4 Neuro (B) problems. The thing i don't usually have is pain, although I've had a (very painful) frozen shoulder and had spells of painful carpal tunnel syndrome type problems in the hands/wrists/forearms. I get also sinus pain with excessive exertion or exposure to sulphites but I've counted that in other symptom groups.

I know its pretty rare for people not to have pain with ME so in an ironic way I'm fortunate. Although I don't want to believe I have ME, as the years go by and I acquire the odd new symptom (such as drug sensitivities in the last year) it becomes harder and harder to believe I have anything else.

I will be overjoyed if the research proceeds on the tight definition of ICC because I think that will do everyone, CFS, ME and atypical ME, more good.

OTH

 

[eric_s]

Isn't it PENE plus two? In theory, PEM/PER/PENE should be fairly restrictive all by itself. Certainly we could discuss refining the description of that, though.

Yes, that's right. I agree that because PENE is something that's not found often outside of ME/CFS that requirement will probably already filter out many subjects.

 

[taniaaust1]

Is it possble that those who aren.t fatigued all the time don't have dysautonomia .. Tc .. X

I dont feel fatigued all the time (I only feel fatigue after activities or if Ive been upright too much) but I certainly do have dysautonomia. So unless dysautonomia can be switching on and off, it dont necessarily make one fatigued. (I can thou get a lot of fatigue when the POTS is being bothersome).

 

[xchocoholic]

I dont feel fatigued all the time (I only feel fatigue after activities or if Ive been upright too much) but I certainly do have dysautonomia. So unless dysautonomia can be switching on and off, it dont necessarily make one fatigued. (I can thou get a lot of fatigue when the POTS is being bothersome).

Hi tania,

I think you hit on the flaw in my statement. I'm still trying to understand the various types of dysautonomia. In my cfs brain we.re all alike ... Lol

I have orthostatic intolerance which means my bp drops 20 points within 3 minutes of standing up. So I start feeling fuzzy headed and tired very quickly. On a good day I can stand for 10 - 15 minutes without feeling light headed but those days/moments are rare.

I wonder what role the time it takes to be affected by dysautonomia plays in our disability and possible treatments options. This may be getting too off topic tho ..

Tc .. X