• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Coalition 4 ME/CFS Proposal to Reclassify Chronic Fatigue Syndrome (CFS) in the ICD-9

Ember

Senior Member
Messages
2,115
When they refer to a "more selective criteria" here, I think they are comparing the ICC with the CDC's criteria, not the CCC.

I disagree with you here, Bob. The ICC states, The Canadian Consensus Criteria were used as a starting point, but significant changes were made...." They do make specific reference to Reeves, as you note above: "Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the
National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome."

In Canada, a patient not meeting the ICC diagnosis would continue to be diagnosed under the CCC.

I believe that the ICC is most specific, the CCC more general, and any CFS definition more general yet.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
well

well, my understanding is that ICC is saying there is one disease, it is called "CFS" and has some bad criteria. But we (the ICC folks) are saying ME is the better term and here is a better criteria.

I don't see ICC doing any splitting, except for those who don't meet all of the criteria are atypical. This is similar to MS. You can have atypical MS.

If CFS is in one area and ME in another, then the ICC has an obstacle for getting the one disease with one criteria and one name. Getting CFS over there next to ME as a similar illness, in the same system, brings it closer to what ICC suggests.

Tina
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I disagree with you here, Bob. The ICC states, The Canadian Consensus Criteria were used as a starting point, but significant changes were made...." They do make specific reference to Reeves, as you note above: "Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the
National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome."

Hi Ember,

You may well be right that they have the CCC in mind when they talk about a more selective criteria.
I was just refering to the specific quote that you gave which, in the ICC, follows on from a comment about the Reeves criteria:

In a study of the Reeves
empirical criteria [16], Jason et al [18] reported that thirty-eight percent (38%) of
patients diagnosed with Major Depressive Disorder were misclassified as having CFS
and only ten percent (10%) of patients identified as having CFS actually had ME.
Accordingly, the primary goal of this consensus report is to establish a more selective
set of clinical criteria that would identify patients who have neuroimmune exhaustion
with a pathological low-threshold of fatigability and symptom flare in response to
exertion.

In Canada, a patient not meeting the ICC diagnosis would continue to be diagnosed under the CCC.

I suppose that the Canadian perspective is quite different from in other countries.
In the UK, for example, I've never heard anyone being diagnosed using the CCC by an NHS doctor.
Is the CCC the main diagnostic criteria that's used in Canada?

I believe that the ICC is most specific, the CCC more general, and any CFS definition more general yet.

That's what I would guess, but I haven't seen a direct comparison between the CCC and ICC yet. (And I can't face doing one for myself.)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
well, my understanding is that ICC is saying there is one disease, it is called "CFS" and has some bad criteria. But we (the ICC folks) are saying ME is the better term and here is a better criteria.

I don't see ICC doing any splitting, except for those who don't meet all of the criteria are atypical. This is similar to MS. You can have atypical MS.

If CFS is in one area and ME in another, then the ICC has an obstacle for getting the one disease with one criteria and one name. Getting CFS over there next to ME as a similar illness, in the same system, brings it closer to what ICC suggests.

Tina

But the CDC's criteria and the ICC don't completely overlap.
So some patients who would not get an ICC diagnosis for 'ME' or 'Atypical ME', would still fall into a CDC diagnosis for 'CFS'.
I don't think that the ICC fully addresses the issue of patients who fall outside an ME diagnosis but within a CFS diagnosis.
 

Ember

Senior Member
Messages
2,115
I was just refering to the specific quote that you gave which, in the ICC, follows on from a comment about the Reeves criteria.

I see your point, Bob.

These passages from pages 3 and 4 in the ICC article are more contiguous (introducing paragraphs 1 and 2 respectively under the heading International Consensus Criteria): The Canadian Consensus Criteria were used as a starting point, but significant changes were made.... The International Consensus Criteria (Table 1) identify the unique and distinctive characteristic patterns of symptom clusters of ME.

In Canada, I've been diagnosed with ME/CFS under the CCC. Although I clearly fit the ICC criteria, I haven't asked to be formally diagnosed with ME because it wouldn't make any difference to my disability status. Until such time as I enrol in a research study, I probably won't feel the need of the more specific ME diagnosis.

As for your comment, I don't think that the ICC fully addresses the issue of patients who fall outside an ME diagnosis but within a CFS diagnosis, I agree. The article states, The scope of this paper is limited to criteria of ME and their application.
 

Ember

Senior Member
Messages
2,115
well, my understanding is that ICC is saying there is one disease, it is called "CFS" and has some bad criteria. But we (the ICC folks) are saying ME is the better term and here is a better criteria.

I don't see ICC doing any splitting, except for those who don't meet all of the criteria are atypical.

The stated stating point for the ICC document was the CCC definition of ME/CFS. From within that definition, the ICC identifies (for further study) a subset of patients with ME.

The ICC states that these ME patients should be removed from the Reeves and NICE criteria for chronic fatigue syndrome. Those patients left behind would then logically have (for now) CFS, CFS/ME or ME/CFS, depending on which definition you're using. Hence (as I see it) the splitting."
 

rlc

Senior Member
Messages
822
Hi Nielk, the statement where the ICC says that the name CFS is to remain for people who don't fit the ICC diagnostic definition.

Is in the Conclusions section of the ICC it says

Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

So only those who fit the ICC have ME.

Everybody else who doesnt have ME will not be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

They will continue to have a CFS diagnosis.

This is backed up by Marj van de Sandes, (one of the principal writers of the ICC) recent statement.

Patients who have myalgic encephalomyelitis (ME) are only one of many groups placed under the CFS umbrella.

As Bob has pointed out they are not saying anything about the people in the CFS group. The ICC makes it very clear that they are solely focusing on ME and not tackling CFS in this Criteria with this statement

The scope of this paper is limited to criteria of ME and their application.

RE From what I understand is that those people who don't fir ALL the criteria, should be called IME - Idiopathic ME
I think that they make it pretty clear that they want to drop the name CFS completely.

This is not the case they have included Atypical ME which is nothing like CFS, its is ME with a few less symptoms as described here

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.

The disease that they are describing is very different to CFS and the CCC ME/CFS, and the numbers that they expect to qualify for it out of those diagnosed with CFS is not high, as they make clear by including this statement from Jason et al

Only ten percent (10%) of patients identified as having CFS actually had ME

Which is why it is really important that the Coalition 4 ME/CFS proposal is stopped, it will mean that all the people with fatigue conditions will wrongly be labeled as having a Neurological disease, and will put CFS on the same footing as ME, undoing all that the ICC is trying to achieve.

Hope this helps, unfortunately the ICC is a Criteria written by doctors, for doctors, and is full of medical jargon and not an easy and clear read for the lay person especially when people are very sick and find it hard to concentrate. It would be nice if they would produce a simplified version for the patients, after all reading the ICC is exactly the kind of thing that gives ME patients relapses.

All the best
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Hope this helps, unfortunately the ICC is a Criteria written by doctors, for doctors, and is full of medical jargon and not an easy and clear read for the lay person especially when people are very sick and find it hard to concentrate. It would be nice if they would produce a simplified version for the patients, after all reading the ICC is exactly the kind of thing that gives ME patients relapses.

hi rlc, have you seen 'Table 1' from the ICC?

It is a simplified version that's quite easy to follow, but I don't know if it's what you mean.

It's published on the CAA's website:

http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf