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CDC Interview on the CFS Toolkit

Ember

Senior Member
Messages
2,115
As I demonstrated before, the Canadian joins CFS and ME and as I demonstrated before, the ICC says it should replace the CFS term.
As Dr. Carruthers points out, the Canadian Definition has been found not to join but to separate ME and CFS:
The results of Jason et al’s studies have confirmed that the Canadian Definition of ME/CFS had clearly separated cases who have ME (fatigue of bio-pathological or natural origin, arising out of a pathological causal structure present in the world apart from the mind that is observing it) from those who have CFS (which includes the minority of the specific natural kinds we are calling ME plus a majority of fatigue kinds that are secondary to other diseases, plus parts of the normal homeostatic activity-rest cycle designed by evolution, plus fatigue kinds constructed by the re-presentational observing/thinking and thus dualistic model-making mind) (emphasis added).http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf
Despite its claim that ME and CFS are the same illness, the Coalition advocates for the adoption of the Canadian Consensus Document (http://www.coalition4mecfs.org/JoinUs.html).

You misinterpret repeatedly the same two sentences from the ICC abstract, trying like Drs van der Meer and Lloyd to claim that the ICC authors “propose to revert to the term ‘myalgic encephalomyelitis’ (ME), abolishing CFS.” The International Consensus Panel has been clear: “Those who fulfill the ICC have ME; those who do not would remain in the more encompassing CFS classification.”
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I don't go by what Van der Meer says. He is not our friend. If you want to quote him, that's up to you. But don't expect me to take it seriously.

As for whether Canadian joins them or not, I invite people to see for themselves. Here is a quote from the CCC.

Throughout this paper, “myalgic encephalomyelitis” and “chronic fatigue syndrome” are used interchangeably and this illness is referred to as “ME/CFS.”

Here is a link to the CCC.

http://www.name-us.org/DefintionsPages/DefinitionsArticles/ConsensusDocumentFull.pdf

The first page is the title page, and on the top of the next page you will find the quote. You can also read it in context there.

Anyway, I don't have the stamina to keep correcting a barrage of bad information. Please everyone, read the CCC and you will see who is telling the truth here.
 

Ember

Senior Member
Messages
2,115
As for whether Canadian joins them or not.... Here is a link to the CCC.
Last year, the International Consensus Panel expressed its view that the hybrid term ME/CFS has become a source of confusion. “Unfortunately, the name ‘CFS’ and its hybrids ‘ME/CFS’ and ‘CFS/ME’ have been used to refer to both ME and general chronic fatigue.” Marj van de Sande, co-editor of both the CCC and the ICC, explained that the CCC document originally bore the name “myalgic encephalomyelitis,” but that its name was changed to ME/CFS in order to increase recognition among American patients:
The draft of the Canadian Consensus Criteria (CCC) used the name “myalgic encephalomyelitis” (ME). However, we changed it to ME/CFS because a member of the panel felt that some American patients were not familiar with the name ‘ME’. At the time we did the CCC, we didn’t have plans to do another definition in the future. In retrospect, it did serve as a good transition period.
With the CCC almost ten years old, the International Consensus Panel recommends that those patients diagnosed using the CCC and not fulfilling the ICC should remain now in the more encompassing CFS classification:
Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification (http://hetalternatief.org/ICC primer 2012.pdf ).
 

Andrew

Senior Member
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2,513
Location
Los Angeles, USA
You said the CCC separated ME and CFS. Your quote doesn't support your position.

As for your other quote from the primer, it is in disagreement with the ICC. I was going by the ICC, which says the CFS name was a mistake, and suggests it be replaced with ME. Also, the primer is in conflict with the other reference you cited from one of the members who lambasted all the definitions except CCC. If these other definitions are so bad, they should not be supporting them. It looks to me like these two authors are acting on their own and without the depth of thought shown by the full committee.
 

Ember

Senior Member
Messages
2,115
It looks to me like these two authors are acting on their own and without the depth of thought shown by the full committee.
Dr. Carruthers' article, “The New International Consensus Criteria for M.E. - content and context, ” contains his original presentation to the IACFSAC Conference. Dr. Broderick's article is a “Response...By the International Consensus Panel.” Both authors are acting as official spokespersons for the International Consensus Panel.

The ICC endeavour now includes the original ME-ICC and the ICP. (The International Symptoms Scale is still in process.) The ICC and the ICP are both consensus documents.

The ICC states, “The scope of this paper is limited to criteria of ME and their application.” The ICP recommendation that those CCC patients who don't fulfill the ICC would remain in the more encompassing CFS classification may stem from the fact that the CCC is a more encompassing definition, bearing the confusing ME/CFS label. Certainly the recommendation sets the ICC apart from its CCC predecessor.
 

Andrew

Senior Member
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2,513
Location
Los Angeles, USA
None of what you said changes the fact that Dr. Broderick attacked the validity of all the definitions except the CCC. Dr. Carruthers' validates all of them, and even lumps CCC in with Oxford. What Carruthers said is in conflict with Broderick. It also overlooks the research and the sentiments of most committee members when it throws the CCC into the same pot as the various other definitions.
 

Ember

Senior Member
Messages
2,115
It also overlooks the research and the sentiments of most committee members when it throws the CCC into the same pot as the various other definitions.
Your attributions puzzle me, especially when you seem to be referring consensus documents. If you're referring to the ICP, then notice, “Primer Consensus: The authors, representing twelve countries, reached 100% consensus through a Delphi-type process.”

(Can you seriously be disparaging Dr. Carruthers for his handling of the CCC?)
 

Ember

Senior Member
Messages
2,115
Try rereading.
http://hetalternatief.org/ICC primer 2012.pdf
Development of the International Consensus Primer for Myalgic Encephalomyelitis (ME)

An International Consensus Panel, consisting of clinicians, research investigators, teaching faculty, and an independent educator, represent diverse backgrounds, medical specialities and geographical regions. Collectively, the members of the panel have:

• diagnosed and/or treated more than 50 000 patients who have ME;
• more than 500 years of clinical experience;
• approximately 500 years of teaching experience;
• authored hundreds of peer-reviewed publications, as well as written chapters and medical books; and
• several members have co-authored previous criteria.

Panel members contributed their extensive knowledge and experience to the development of the International Consensus Criteria and this Primer. In addition, an International Symptom Scale will be developed to complement the criteria and promote clearer identification of patients for research studies.

Primer Consensus: The authors, representing twelve countries, reached 100 % consensus through a Delphi-type process.

International Consensus Criteria (ICC)

Problem
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.

Solution
The rationale for the development of the ICC was to utilize current research knowledge to identify objective, measurable and reproducible abnormalities that directly reflect the interactive, regulatory components of the underlying pathophysiology of ME. Specifically, the ICC select patients who exhibit explicit multi-systemic neuropathology, and have a pathological low threshold of physical and mental fatigability in response to exertion. Cardiopulmonary exercise test- retest studies have confirmed many post-exertional abnormalities. Criterial symptoms are compulsory and identify patients who have greater physical, cognitive and functional impairments. The ICC advance the successful strategy of the Canadian Consensus Criteria (CCC) of grouping coordinated patterns of symptom clusters that identify areas of pathology. The criteria are designed for both clinical and research settings.

1. Name: Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.

2. Remove patients who satisfy the ICC from the broader category of CFS. The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.

3. Research on ME: The logical way to advance science is to select a relatively homogeneous patient set that can be studied to identify biopathological mechanisms, biomarkers and disease process specific to that patient set, as well as comparing it to other patient sets. It is counterproductive to use inconsistent and overly inclusive criteria to glean insight into the pathophysiology of ME if up to 90% of the research patient sets may not meet its criteria (Jason 2009). Research on other fatiguing illnesses, such as cancer and multiple sclerosis (MS), is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.

4. Research confirmation: When research is applied to patients satisfying the ICC, previous findings based on broader criteria will be confirmed or refuted. Validation of ME being a differential diagnosis, as is multiple sclerosis (MS), or a subgroup of chronic fatigue syndrome, will then be verified.

5. Focus on treatment efficacy: With enhanced understanding of biopathological mechanisms, biomarkers and other components of pathophysiology specific to ME, more focus and research emphasis can target expanding and augmenting treatment efficacy.

International Consensus Primer (ICP)

Problem

Overly inclusive criteria have created misperceptions, fostered cynicism and have had a major negative impact on how ME is viewed by the medical community, patients, their families, as well as the general public. Some medical schools do not include ME in their curriculum with the result that very significant scientific advances and appropriate diagnostic and treatment protocols have not reached many busy medical practitioners. Some doctors may be unaware of the complexity and serious nature of ME. Patients may go undiagnosed and untreated; they may be shunned or isolated.

Solution
The ICP was written to provide clinicians a one-stop, user-friendly reference for ME. It includes a concise summary of current pathophysiological findings upon which the ICC are based. A comprehensive clinical assessment and diagnostic worksheet enables clear and consistent diagnosis of adult and paediatric patients world-wide. The treatment and management guidelines offer a blueprint for a personalized, holistic approach to patient care, and include non- pharmaceutical and pharmaceutical suggestions. Patient self-help strategies provide recommendations for energy conservation, diet, and more. Educational considerations for children are included.

The ICP specifically targets primary care clinicians, as well as specialists in internal medicine. Other medical care practitioners may find it helpful. Medical school faculties are encouraged to include this primer in their curriculum.

The International Consensus Primer represents the collective wisdom and experience of the members of the panel. They share their insights into this complex disease gleaned through research and hundreds of thousands of hours of clinical investigations.

The International Consensus Panel anticipates that the primer will bring forward movement in enhancing clarity and consistency of diagnoses and treatment of ME internationally.

Acknowledgements
Patients: The panel would like to gratefully acknowledge the participation and support of the patients and their families, both in the clinical setting and in the research described within, upon which these physicians’ guidelines are based.

Anne-Marie Kemp, BA, M Ed; David Kemp, BA, M Ed: proof-reading

This Primer will be updated when appropriate.

Authors and their affiliations are listed on the front and back inside covers.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Jason et al. [6] found the Reeves empirical criteria to be flawed because it was possible to meet the CFS criteria without any physical symptoms, only 10% actually had ME/CFS and 38% of patients with Major Depressive Disorder were misclassified as having CFS. The increased estimates of CFS from 0.24% (Fukuda) to 2.54% (Reeves, USA) and 2.6% (UK) confirm that the Reeves and Oxford criteria select patient sets that are approximately ten times larger and more inclusive than those selected by the Fukuda criteria [7]. Whilst some general information about fatigue may be ascertained using these inclusive criteria, it is not productive to try to study the mechanisms of ME if up to 90% of the research patient set do not meet the criteria for ME. The Fukuda criteria, in which postexertional malaise is an optional criteria, is based on what was known in the early 1990s and has been used in the majority of research studies. In comparison with the Fukuda criteria, the Canadian Consensus Criteria [8], which made postexertional malaise compulsory, differentiated ME patients from those who were depressed and selected patients with greater physical and cognitive functional impairments [9]. Following the publication of the 2003 Canadian Consensus Criteria, studies confirmed their utility in this regard.
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full
 

Ember

Senior Member
Messages
2,115
Thanks, Andrew. I've read “Response to 'A Controversial Consensus'; By the International Consensus Panel” and the ICP. Can I take it that you disagree with the International Consensus Panel's recommendation that ME should be separated from CFS?
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I've already clarified this when I stated agreement with the following.

The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
 

Ember

Senior Member
Messages
2,115
Do you agree or disagree with the International Consensus Panel's recommendation that ME be separated from CFS?
 

Ember

Senior Member
Messages
2,115
...getting confused watching this circular discussion...
The International Consensus Panel has recommended separating ME and CFS:
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 (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full).
Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification (http://hetalternatief.org/ICC primer 2012.pdf ).
Do you agree or disagree with the International Consensus Panel's recommendation to separate ME and CFS?
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I think that the coalitions position was a good political one in the political situation at the time. However, things are moving fast. I don't think its sound under current conditions, particularly with the people who wrote the ICC coming out and making a stand. One of the reasons that the idea of ME/CFS was sound was that, at the time, very few of the researchers would make a stand and say ME and ICF and CFS are different in a clear unambiguous way. It was their opinion I think, but they were being conservative in expressing it. Without our researchers making a stand, our claims looked vacant.They have now done so, clearly disambiguating ME from ICF from CFS. Hence the politics has moved on.

I don't understand what CFS is supposed to mean? I don't see any valid meaning for CFS other than inappropriate usage for ME or inappropriate usage for ICF? Is there some statement from the scientists that I missed?

I had thought they meant to extracate ME from CFS=ICF&ME (since we cannot get any traction to destroy CFS=ICF)?
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
The International Consensus Panel has been clear: “Those who fulfill the ICC have ME; those who do not would remain in the more encompassing CFS classification.”

Ember posted a quote from: http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf

It appears clear to me that this refers to CFS=ICF (not to any particular entity which could rightly be considered an actual syndrome of CFS)

See also:
"Over vigorous objections, the name then largely shifted to “CFS”, a noncommittal umbrella disease concept that
includes all fatigues that are severe, chronic and unexplained, but ignores the “syndromeness” embedded in its etymology by putting symptoms onto lists that ignore their dynamical relations of causal inter-activity. This latter points to a common underlying causal structure, however complex and currently unknown, and is found in the etymology of the word “syndrome” (Gk. running together)."
Carruthers, IiME, Vol 6, issue 1 (bolding mine)
http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf

So it appears to me that it's ICF [inappropriately titled CFS] which they intend to remove ME from. Not an additional condition of CFS. There are only two: ME and ICF. Both inappropriately being called CFS. And inappropriately conflated.
 

WillowJ

คภภเє ɠรค๓թєl
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Location
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Regarding the Coalition 4 ME/CFS's proposal, please remember that this proposal referred to coding only.

I'm certain they want to change the definition, but one cannot change the definition with the coding committee. That requires a different initiative with a different committee.

The reason they were working on coding at this time was that the US is set to adopt its clinical modifications of ICD-10, so it seemed a prime opportunity to move the disease from the F codes (signs, symptoms, and ill-defined conditions) to the G codes (neurological) where WHO has PVFS, CFS, and ME listed all together under G93.3. Please recall that CDC had written G93.3 out of ICD-09-CM entirely, and it is illegal in the USA to diagnose or treat for any condition which does not appear in the ICD-CM.

I believe that this move would encourage less wastebaskety ICF-type diagnosis, and communicate the severity of the condition to doctors and insurance companies, even if nothing else were immediately changed.

Of course, getting a better definition in use and quashing especially the worst ones like Oxford and the "Empirical approach" is a prime goal.
 

Ember

Senior Member
Messages
2,115
That quotation is actually from the International Consensus Primer. It reads:
Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification (http://hetalternatief.org/ICC primer 2012.pdf).
In the following paragraph, entitled “Remove patients who satisfy the ICC from the broader category of CFS,” the ICP explains:
The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.
Their position here seems consistent with the ICC statement, “The scope of this paper is limited to criteria of ME and their application.” The International Consensus Panel invites further research both to validate its ME definition and to identify other CFS subsets, removing them from the broad CFS/CF category. That work, however, remains beyond the scope of the International Consensus Panel.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I do think ME and CFS should be separate, but this does not directly imply that they should be encoded in separate sections. The same section with different subcodes might be appropriate too. These are all post viral diagnoses, and I am including PVFS, CFIDS etc in that.

With respect to the ICC one of the issues they face is that they are not just dealing with science but the current bureaucratic positions on ME and CFS. So their statements might reflect political issues as well as scientific ones. CFS as a diagnosis is here to stay for a while yet, and to ignore that is to avoid the political and managerial implications. CFS codes and diagnoses wont go away easily.

One reason to code CFS separately from ME is that official statistics can then track ME better. It wont be perfect due to both misdiagnosis and refusal to recognize or diagnose ME, but it will be a start.

However the term ME/CFS generally is likely to persist. No matter if some places abandon it, other places will continue to use it or its variant CFS/ME. The best way to think of it is that ME/CFS is not a diagnosis, its a broad diagnostic category under which several diseases may exist.

Until the CDC and NICE make changes to their policies and publications there will still be considerable confusion everywhere over the terms. There is no immediate solution for that, though eventually I think the term CFS will disappear.

Bye, Alex