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

[Cort]

One of the biggest questions awaiting the new definition for myalgic encephalomyelitis (ICC) is who fits it vs who fits the standard definition for CFS. The ICC authors believe that people who meet their criteria may have a different sort of illness than people who meetthe Fukuda definition but who do not meet the ICC definition. Future studies will hopefully determine whether that is true or not.

Note that the Fukuda definition requires fatigue that is not the result of 'ongoing exertion' while the ICC makes 'exertion-based fatigue' a key requirement. The Fukuda definition also requires that fatigue not be 'substantially alleviated by rest'.

We should note that the ICC was produced by the agreement of ME professionals. Dr. LeonardJason is currently using statistical analyses to determine symptom criteria. His criteria will probably differ in some aspects from the ICC criteria.

in this poll we ask you to look at both definitions and determine which one(s) you meet.

Fukuda Criteria for CFS (1994)

The Fatigue Requirements

• Unexplained persistent or relapsing fatigue that had a definite onset (is not lifelong)
• Is not the result of ongoing exertion and is not substantially alleviated by rest.
• Results in a substantial reduction in previous levels of occupational, educational, social or personal activities.

Plus you must also have four or more of the following symptoms each of which must have showed up with the illness and not before.

• Impairment in short-term memory or concentration
• sore throat
• Tender lymph nodes in the neck or shoulders
• muscle pain
• multi-joint pain without joint swelling or redness
• headaches of a new type, pattern, or severity;
• unrefreshing sleep;
• post-exertional malaise lasting more than 24 hours.

International Consensus Criteria (ICC) For ME (2011)

The ICC criteria are much more complex; to meet them you MUST meet the Exertion Requirements

Post-exertional neuroimmune exhaustion (PENE) which involves rapid physical or mental fatigability in response to exertion, increased symptoms after exertion and prolonged recovery periods (usually 24 hours or more) and substantially reduced activity levels

Plus you must have at least seven more symptoms spread across 10 categories....To be specific you need to have

PLUS ONE symptom from THREE of the next FOUR symptom categories....(neurocognitive impairments, Pain, Sleep Disturbance and Neurosensory, Perceptual and Motor Disturbances

Neurocognitive Impairments

Slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overloadddifficulty with making decisions, slowed speech, acquired or exertional dyslexia, short-term memory loss: e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

Pain

1. Headaches: e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine;
2. tension headaches
3. Significant pain experienced in the muscles, muscle-tendon junctions, joints, abdomen or
4. chest. It is non-inflammatory in nature and often migrates. e.g. generalized hyperalgesia,
5. widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain

Sleep Disturbance

1. Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than
2. before illness onset, vivid dreams/nightmares
3. Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

4. Neurosensory, Perceptual and Motor Disturbances

1. Neurosensory and perceptual: e.g. inability to focus vision, sensitivity to light, noise,
2. vibration, odour, taste and touch; impaired depth perception
3. Motor: e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

PLUS At least One SYMPTOM from THREE of the following five categories (three symptoms total spread out over five categories; Flu-like, Viral Infections, Gastro-intestinal, Sensitivities)

Immune, Gastro-intestinal & Genitourinary Impairments

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
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome
4. Genitourinary: e.g. urinary urgency or frequency, nocturia
5. Sensitivities to food, medications, odours or chemicals

PLUS Least ONE SYMPTOM from the Energy Production/Transportation Impairment Category

D. Energy Production/Transportation Impairments: At least One Symptom

1. Cardiovascular: e.g. inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness
2. Respiratory: e.g. air hunger, laboured breathing, fatigue of chest wall muscles
3. Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities
4. Intolerance of extremes of temperature

Now that you've determined which criteria you meet please take the poll.

 

[Cort]

I just barely made it through the ICC definition because of the Immune, Gastrointestinal, etc. category. I have recently been experiencing flu-like symptoms - but usually I haven't; my issues having to do more with pain and muscle fatigue. Sometimes I do suffer from increased urinary frequency but not very often.

With regards to Fukuda I would say that my fatigue is substantially reduced by rest but not completely and it certainly is tied to exertion but probably not in the way the authors meant - which my guess is a normal person engaging in too much exertion over a long period of time.

 

[SickOfSickness]

It's depressing how accurately those detailed criteria fit me (us), and yet most doctors would believe I (we) are fine... they are the crazy ones

 

[Esther12]

With regards to Fukuda I would say that my fatigue is substantially reduced by rest but not completely and it certainly is tied to exertion but probably not in the way the authors meant - which my guess is a normal person engaging in too much exertion over a long period of time.

Face it Cort... you've not got ME/CFS!!! Cured at last!

I'm kind of in the same boat. I just started a thread yesterday after going through my medical notes and seeing that I'd previously been told the benefits I got from rest meant I did not fulfil Fukuda.

re "[Fatigue:] Is not the result of ongoing exertion and is not substantially alleviated by rest."

I don't really understand what this means, but I'm pretty certain it doesn't apply to me. My fatigue is a result of ongoing exertion... although of a much more extreme sort than was previously the case. When I really rest up I can feel pretty normal, but then even minor exertion can leave me exhausted for days. With the ICC, I fulfil it, but much of the criteria is rather subjective, and also relates to symptoms that seem variable for me (eg: I've moved my sleep to a more normal pattern recently, although I'm naturally someone who stays up/sleeps in late.)

So many different conditions leads to CFS like symptoms... fatigue is almost a universal symptom for ill health, so I'm not sure how useful any particular criteria for CFS can be when it's based entirely on reported symptoms. That my illness started with glandular fever, and I have suffered from extreme fatigue ever since, would seem to mean that I have a type of what became known as CFS, and I think it would be better to focus on these different sub-types (eg: try to understand why EBV and certain other viruses seem to lead to CFS more than others) than try to develop different subjective criteria for lumping together different patients with similar symptoms.

 

[Cort]

I'm in the same boat - I think I would have just missed the ICC if not for a downturn in health over the past couple of months. I rarely had flu-like symptoms before but now have more of them.

 

[jace]

A Fukuda diagnosis includes a large percentage who do not have ME, that's the trouble. Using Fukuda for scientific studies on ME produces a mixed cohort, and you can't study pears by looking at fruit salad. We have to insist on tighter diagnostic criteria if we are to get anywhere with any ol' fruit, it doesn't just mess up research in pears, it messes up research on all the other ingredients as well.

Insist on the ICC.

 

[Bob]

A Fukuda diagnosis includes a large percentage who do not have ME, that's the trouble. Using Fukuda for scientific studies on ME produces a mixed cohort, and you can't study pears by looking at fruit salad. We have to insist on tighter diagnostic criteria if we are to get anywhere with any ol' fruit, it doesn't just mess up research in pears, it messes up research on all the other ingredients as well.

Insist on the ICC.

I agree that we need a tight definition especially for research purposes.
I think this would be one of the most important step forwards for our community.
My hope is that the ICC will be widely adopted soon, at least for research.

 

[Bob]

I wonder if the ICC is selecting out the more severe patients, while Fukuda is catching the milder forms. Or of course, there could be similar, but not identical, illnesses.

I met Fukuda in the early days of my illness, but possibly not the ICC. Now the ICC fits like a glove. Could it be that Fukuda recognizes the underlying illness while the ICC is identifying symptoms that are the result of secondary infections and longer-term damage?

Just thinking aloud....

For me it's the other way round...

I started off with classic text book 'ME', with very 'sudden onset', 'flu-like symptoms', severe malaise, and severe post exertional exhaustion etc etc etc.
Eight years on, and my boom and bust cycle has stabilised, and my various symptoms shift regularly.
(Although my main symptoms - fatigue, malaise and cognitive dysfunction - are always present.)
Now, on a day to day basis, I'm not sure if I fit the ICC except if I consider all of my symptoms over the course of a year.

Judy Mikovits has said that her patients' symptoms vary over time, and that a patient's symptoms should be considered over the course of the illness, and not a snapshot. If I remember correctly, she said that some of her patients improve over time and might have trouble fitting a CCC diagnosis, and I think that Nancy Klimas agreed with her. It was in last year's IiME's round table discussion DVD.

I was disappointed not to see this emphasised, or even mentioned, in the ICC. (i.e. taking into account the fluctuating nature of the disease.)

 

[Bob]

Sudden onset vs Slow onset

One thing that I think is important to point out to everyone is how Byron Hyde defines 'sudden onset'.

It's not as straightforward as you would imagine.

Some people think that they had 'slow onset', whereas Hyde always takes a complex clinical history and finds out for himself, and can come to the opposite conclusion.

'Sudden onset' can easily be missed by the patient because of the fluctuating nature of ME.

As an example, someone might have had a 'sudden' but very mild and short first episode of ME (this is just an example - it could be severe but short or mild and long or intermittent etc.), which then disappeared completely before the patient gradually became more ill again. So this type of onset could easily be considered as slow onset by the patient, but Byron Hyde would define it as 'sudden onset'. This type of 'sudden onset' could easily be missed by the patient, or forgotten about, or just mistaken for flu or similar.

Or there might have been a 'sudden' first episode many many years earlier (that possibly lasted for a few days or for a few weeks or months), that the patient had completely forgotten about or had decided at the time was just a viral infection, and then the symptoms returned again, slowly, long after the patient had forgotten about the original epidode. So this would also be mistaken for slow onset, whereas Hyde would call it sudden onset.

So things are not clear cut, and all of the patient's clinical details need to be taken into account.

 

[Cort]

One think that I think is important to point out to everyone is how Byron Hyde defines 'sudden onset'.

It's not as straightforward as you would imagine.

Some people think that they had 'slow onset', whereas Hyde always takes a complex clinical history and finds out for himself, and can come to the opposite conclusion.

'Sudden onset' can easily be missed by the patient because of the fluctuating nature of ME.

For example, someone might have had a 'sudden' but very mild and short first episode of ME, which then disappeared completely before the patient gradually became more ill again. This could easily be mistaken for slow onset, but Byron Hyde would define it as 'sudden onset'.

Or there might have been a 'sudden' first episode many many years earlier (that possibly lasted for a few days or for a few weeks or months), that the patient had completely forgotten about or had decided at the time was just a viral infection, and then the symptoms returned again slowly long after they had forgotten about that epidode. So this would also be mistaken for slow onset, whereas Hyde would call it sudden onset.

So things are not clear cut, and all of the patient's clinical details need to be taken into account.

My conclusion reading Hyde more closely is that Bob may be right - my sense was that things were not as black and white as Hydes definition suggested. Dr. Chia has said that many of his patients have 1 cold they got over, then another, then another - each probably getting a bit worse and then finally one that they don't get over.....that's kind of like a gradual progression to a 'sudden' onset....

 

[Nielk]

This is an important poll. I hope more people will respond so that we can get a greater picture of what the patient groupings are.

 

[Cort]

Yes, I don't think the sudden onset issue is at all clear.

My daughter and I had the same extremely sudden onset flu-like illness that was unusual, but not severe. I got past the sore throat, swollen lymph nodes, etc, but was never fully back to normal. My daughter appeared to get over it, but had a relapses for a few years, getting worse and more frequent, but didn't get to the point where she didn't recover until she had a chicken pox booster. If we hadn't both had the same weird sudden onset flu-like illness (and the same odd symptoms), we probably wouldn't have recognized her onset for what it was. I suspect that's true for many people -- the sudden onset illness isn't recognized at the time.

This is certain an area that needs more exploring with questionnaires. My onset was gradual but sudden; that is it occurred probably over a month or two while at school but without a flu-like onset. I had never experienced any poor health prior to that and that was kind of it for me.....I was at my worst early on and slowly got better.

Do we have the same illness? I hope we can answer that question some day....

 

[WillowJ]

One think that I think is important to point out to everyone is how Byron Hyde defines 'sudden onset'.

It's not as straightforward as you would imagine....

Thank you so much, Bob. That really cleared things up for me. I had a sudden onset where I had probably less flu symptoms (after I got over the flulike illness I had with onset), but I think chills stayed, and not pain, but lots of neurological symptoms and MCS. Then eventually a quite good remission, then relapsing/remitting course, and eventually an indefinite (still remains) exacerbation.

I could never figure out whether I counted as sudden onset. I thought it should, but with the remission and stuff, I wasn't sure. I definitely wouldn't class my first bout as either mild or short, but I stayed in university for the rest of the semester before dropping out, and without dropping any classes (just dropping a lot of extra activities, and losing a letter grade off my scores as compared to the previous semester). I also somehow managed to hide my illness from all but my closest friends and my roommates. I was in denial and didn't want to deal with it, so I didn't even tell my trusted professors.

 

[WillowJ]

With regards to Fukuda I would say that my fatigue is substantially reduced by rest but not completely and it certainly is tied to exertion but probably not in the way the authors meant - which my guess is a normal person engaging in too much exertion over a long period of time.

I think the same as you about the fatigue being tied to exertion.

My fatigue/weakness is somewhat relieved by rest but I don't know about "substantially"; I think they mean like a normal person here, too--that rest restores one to be able to do a normal amount of things, before becoming worn out again. And that, this isn't burnout or overwork, and a vacation can't restore us to health... (wouldn't that be nice if it were so?)

I'm going to say I meet both (I very easily meet ICC).

 

[Bob]

'Atypical ME' diagnosis in the ICC

Cort, I think it's very important to make everyone aware of the 'atypical ME' diagnosis that is contained in the ICC for patients who don't meet all the criteria for the standard 'ME' diagnosis.
I think that this alternative diagnosis of 'atypical ME' in the ICC, makes a big difference to our community, compared with purely having the primary diagnosis of 'ME'.
You haven't given this as an option in your poll, but I think it is very important for people to know about. Could you add it or is it too complicated to add it now?

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.

One other thing I think we all need to establish between us, is whether we should consider all of our symptoms since we first became ill, or are we taking a snapshot? I think that this isn't addressed in the ICC, but I think it's an important ommission.

 

[justy]

I think the same as you about the fatigue being tied to exertion.

My fatigue/weakness is somewhat relieved by rest but I don't know about "substantially"; I think they mean like a normal person here, too--that rest restores one to be able to do a normal amount of things, before becoming worn out again. And that, this isn't burnout or overwork, and a vacation can't restore us to health... (wouldn't that be nice if it were so?)

Thanks Willow for this clarity -i have been trying to explain this on another thread -not very succesfully and you summed it up nicely, exactly my experience too.

As to Bob's question i think if you have been ill for some years then including past symprtoms should be the way to go rather than a "snapshot" in time. I am one of those who has a tendency to being mroe functional over time and have in the past had an almost full remmission. This time around (i sort of see it as having had M.E twice) my symptoms have been much more severe and the recovery significantly slower with more widespread symptoms. I also crash up and down a lot more between moderate/mild to moderate/severe -it is very fluctuating.

For me i fit the ICC so well that it nearly brought a tear to my eye to see my illness so well defined - i fit many many more of the symptoms categories than i actually need so its no doubt in my mind that i have M.E.
Justy.

 

[Graham]

Yes, I'm there with Bob on this one. After 11 years my symptoms are fairly steady (which I know is unusual): I only fall into the ICC realm when I overdo things.

Like you Cort, it's the Immune/Gastro section that I would fall down on - a couple of these would be problems that I had prior to ME.

 

[Bob]

In case it's any help to anyone, here is a link to 'Table 1' from the ICC.
If you ignore the 'abstract' on the first page, it's an easy-to-use reference sheet for the symptoms.
It's published on the CAA's "research 1st" website:
http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf

 

[floydguy]

I appear to be a unique case in that exercise doesn't affect me very much - doesn't exacerbate symptoms. However, most of the testing - including the exercise bike VO2 Max Test - reveal the same abnormalities as othershave. My sleep has improved so I am not all that tired but I am constant physical agony - I suspect from immune dysfunction. My worst problem is a very dysfunctional immune system but I also have the neurological issues. So I don't seem to meet Fukuda or ICC.

 

[xchocoholic]

I.m totally disabled with ME and have been from the start. I caught a bug and had non stop utis, uris and extremely low temp for several years. That was on top of horrible headaches, ataxia, extreme pain and muscle spasms in most of my body, etc ..

Now avoiding trigger foods and chemicals help but these symptoms associated with each food or chemical come right back if I'm not careful. Also, if I try to ignore my pene and push myself, my rubbery arms and legs get even more rubbery. Lack of sleep makes me feel wiped out mentally and physically all day too.

I feel better from laying down flat and resting but I have to do this for an hour every couple of hours maximum in order to think clearly or breath properly. But I have orthostatic intolerance and my bp drops 20 points in 3 minutes upon standing. And if I stand still for 10 minutes my heart rate jumps 30 pts. It.s impossible not to feel fatigued without proper blood supply.

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