Petition to DHHS for Disease Appropriate Definition and Name

[WillowTree]

A group of patient organizations and advocates submitted a position paper to Secretary Sebelius, Dr. Koh, Dr. Frieden and Dr. Collins calling for a disease appropriate definition for ME and also asking for DHHS to stop using the overly broad and non-specific term “CFS”. Their letter can be found here http://bit.ly/18hDBE4. There is now a petition whereby all of us can support this action. The link to the petition is http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease.

 

[Nielk]

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

Sign this petition to DHHS telling them that fatigue is not a disease.

The name Chronic Fatigue Syndrome is a misnomer and has proven to have given both medical staff & the public the idea that patients are merely tired. Nothing could be further from the truth. As author Laura Hillenbrand has stated publicly "This illness is to fatigue what a nuclear bomb is to a match!"

 

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Done!

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[*GG*]

Already done, there is the same subject in Action Alerts and Advocacy.

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[Sasha]

Nielk - do you maybe want 'Petition' in the title of this so people can see it's easy? Something like:

Sign petition to tell DHHS to change name from CFS to ME

If so, I'm sure Kina would change it.

 

[Ember]

This initiative asks for the adoption of the CCC. But at the IiME Conference this week, “Dr. Peterson...said that, in his view, there is now a need for a single set of diagnostic criteria accepted worldwide by researchers and clinicians and to 'forget nomenclature.'”

The CCC are not research criteria. Why are patients seeking the adoption of decade-old ME/CFS clinical criteria? Why would you ever use old outdated criteria?

 

[Sasha]

At the IiME Conference this week, “Dr. Peterson...said that, in his view, there is now a need for a single set of diagnostic criteria accepted worldwide by researchers and clinicians and to 'forget nomenclature.'” Why are patients seeking the adoption of these decade-old ME/CFS clinical criteria? The CCC is an outdated definition. Why would you ever use outdated criteria?

I don't see how we can forget nomenclature. If we're talking about disease as defined by the CCC or ICC - the only disease worth talking about - then we're talking about ME and calling that by such a damaging, trivialising name as CFS hurts patients every day. There was some research done on this - a survey of doctors' ratings of perceived severity of the same symptoms according to whether they were told the disease was called ME or CFS - and the ME group perceived it as much more severe (if anyone has a reference I'd be grateful).

Yes, let's focus on diagnostic criteria by all means but I don't see that that rules out ignoring every other issue. I don't read Dr Peterson's comment as a call for patients to do that. It's possible he meant that nomenclature will sort itself out as the research progresses and it becomes more obvious what to call the disease (such as NK cell dysregulation or something).

 

[Ember]

Yes, let's focus on diagnostic criteria by all means but I don't see that that rules out ignoring every other issue.

Given the need for a single set of diagnostic criteria to be accepted worldwide by researchers and clinicians, why then seek the adoption of outdated clinical criteria?

 

[Sasha]

Given the need for a single set of diagnostic criteria to be accepted worldwide by researchers and clinicians, why then seek the adoption of outdated clinical criteria?

Sorry, I don't understand you - are we talking about the same thing?

 

[Ember]

Sorry, I don't understand you - are we talking about the same thing?

How can I clarify? I've written a longer explanation here.

Dr. Peterson addressed the need for a single set of diagnostic criteria to be accepted worldwide by researchers and clinicians. This initiative seeks instead the adoption of outdated clinical criteria. Why defeat our own purpose in this way?

 

[Sasha]

I think we're at cross-purposes, Ember! Sorry, too tired to think about this one now - off to bed soon. I'd better let it lie!

 

[Michelle]

I think Ember is saying that the linked-to petition as written calls for both changing the name AND the adoption of the CC criteria -- which are indeed now a decade old having been published in 2003.

I too find it puzzling that the petition calls for both and think the petition would be far more effective if it focused exclusively on the name, leaving diagnostic criteria for later. Should the current CDC multi-center attempt at putting everyone on the same page diagnostically-speaking fail, then a separate petition at that time might be warranted.

P.S. I think you are referring to a paper by Jason, et al. regarding the use of ME, CFS, and Nightingale's Disease.

 

[Sasha]

Sorry, Ember - skim-read it.

I think this has been thoroughly argued on the other thread so I'll not jump into that!

 

[Angelina LeBaron]

The Canadian Consensus Criteria (CCC) is not out of date. When you ask a governmental body to adopt a case definition, it has to have been tested and found reliable. Over the past ten years, the CCC has been used in research and diagnosis. It has been found to be much more accurate in determining who has CFS/ME than the current CDC "Fukuda" criteria, which also catches people with other disorders. The reason for the difference is that the CCC REQUIRES post-exertional malaise. This is the defining, and distinguishing, symptom of ME (and what they've been calling "CFS"). As long as we have a case definition that can include people who are tired from any number of causes (diabetes, MS, cancer, to name three) we can't have good research. The definition is everything. The name "CFS" will be dropped as soon as the definition is changed.

Read the posts on ProHealth today:

http://www.prohealth.com/library/showarticle.cfm?libid=18124

http://www.prohealth.com/library/showarticle.cfm?libid=18126

http://www.prohealth.com/library/showarticle.cfm?libid=18133

http://www.prohealth.com/library/showarticle.cfm?libid=18131

 

[snowathlete]

I agree with Angelina LeBaron
Moving from the current outdated criteria that capture multiple disease entities under the umbrella term CFS, to a tried and tested definition where post-exertional malaise is mandatory and the disease term used is more accurate, would be a significant progression.

Edit: I signed the petition, btw.

 

[Ember]

The Canadian Consensus Criteria (CCC) is not out of date.

The CCC is an outdated definition, replaced by the ICC: “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.”

When you ask a governmental body to adopt a case definition, likely it shouldn't be an outdated one.

 

[taniaaust1]

Everything is always outdated by the time governments accept things.

 

[taniaaust1]

I think Ember is saying that the linked-to petition as written calls for both changing the name AND the adoption of the CC criteria -- which are indeed now a decade old having been published in 2003.

I too find it puzzling that the petition calls for both and think the petition would be far more effective if it focused exclusively on the name, leaving diagnostic criteria for later..

England calls it ME dont they? and look how they treat ME patients. A name change without a definition change doesnt necessarily do anything at all (just would muddy more the name ME as then all the CFS non ME people would be officially under it too). Just more mess.

 

[Michelle]

Alas I've been too ill to read PR in all its width and breadth for months now, so on my first day checking into the forums I read this thread and the link to the petition above without having read the multi-group Petition to the DHHS. Having now read the letter, I don't really have any problem with it per se (and indeed would be pleased to abandon both the name "CFS" and its Fukuda criteria), though I'm uncertain how much effect if will have. As you point out tania, the name "ME" is of no help to patients in the UK. And DHHS is simply going to say they are going to wait for the CDC multi-center study. But with regard to that multi-center study, our imploring CDC to include CPET in that study could have a very valuable, palpable effect on the definition to come that is most certainly going to be what IS used.