"The Oxford Definition: It's Baaack”

[Ember]

by Mindy Kitei for CFS Central
Saturday, December 22, 2012

“At FDA, Unger...said in her decision that more needs to be known about this 'subset' of ME patients who respond to Ampligen.”

A couple of weeks ago I asked CDC's Unger via email why is CDC using the antiquated Oxford* definition in its partnership with HRSA (Health Resources and Services Administration), along with Fukuda** and Canadian Consensus Criteria*** in its continuing education courses? The Oxford definition requires only fatigue, unlike the other definitions of ME, which require immune, neurologic and autonomic symptoms.

I also asked Unger:

• For most CFS-literate physicians and patients, using all three definitions is a problem... According to most CFS-literate physicians, the Canadian Consensus Criteria (CCC) is the most accurate and thorough of these three definitions....

• The CCC definition describes the illness that most patients and CFS-literate physicians understand to be CFS. Given that using multiple definitions results in confusion and heterogeneous populations, why not make this critical change and use only CCC?

Read more: http://www.cfscentral.com/2012/12/the-oxford-definition-its-baaack.html

 

[Desdinova]

I'm not surprised in the least that a hardliner like Unger voted the way she did. Nor am I surprised she would want to go back to the oxford definition. Since it IMO belittles and misrepresents the disorder.

 

[Seven7]

WHY R WE MOVING BACKWARDSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS!???

 

[alex3619]

.xelA

.wonk t'nod I

?sdrawkcab gnivom ew era yhW

 

[Ember]

Dr. Unger opposed any endorsement of the CCC or ICC at the last CFSAC meeting. Following Dr. Fletcher's comment, “I’m sorry; I think this is some kind of mysterious delaying tactic that I don’t understand. We’ve had the same conversation before. It’s a circular conversation,” Dr. Unger defended her umbrella definitions:

I sit here and I believe that there is no one case definition that is going to get us to homogeneity in this illness. It is way too diverse. We have to understand how to handle that diversity. I think we handle it by giving clinicians the tools to understand the full spectrum of the illness. Therapies can then be targeted to the various aspects of the disease. It’s a broad umbrella with various degrees of severity.

Neither the CCC nor the ICC panel of experts has accepted her “broad umbrella with various degrees of severity” assessment. Like so many patients, Dr. Unger holds that “we have to be unified.”

 

[Sean]

Aaaaaaaaaaaarrrrrrggggghhhh!

One step forward, a dozen back.

 

[SOC]

Dr Unger can have her broadly defined wastebasket CFS diagnosis if she wants it for those with generalized, otherwise unidentifiable fatigue. However, if she's going to do that she needs to allow another diagnosis (ME?) for those with far more than simple fatigue.

It is not logical for patients with severe, life-altering immune and neurological problems to be grouped with people who are just tired. It's pretty much guaranteed your research is going to have muddled results. Garbage in -- garbage out.

Fine, have your 'CFS', Dr Unger. But give those of us seriously ill a real diagnosis.

 

[Ember]

Fine, have your 'CFS', Dr Unger. But give those of us seriously ill a real diagnosis.

That seems to be the ICP solution: “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.”

 

[taniaaust1]

Dr Unger can have her broadly defined wastebasket CFS diagnosis if she wants it for those with generalized, otherwise unidentifiable fatigue. However, if she's going to do that she needs to allow another diagnosis (ME?) for those with far more than simple fatigue.

It is not logical for patients with severe, life-altering immune and neurological problems to be grouped with people who are just tired. It's pretty much guaranteed your research is going to have muddled results. Garbage in -- garbage out.

Fine, have your 'CFS', Dr Unger. But give those of us seriously ill a real diagnosis.

Thanks.. you posted my thoughts exactly.

http://www.cfscentral.com/2012/12/the-oxford-definition-its-baaack.html quote below from Mindy's article

At FDA, Unger also said in her decision that more needs to be known about this "subset" of ME patients who responds to Ampligen. If Unger, the late William Reeves and the rest of the sham scientists at CDC had bothered to investigate the disease seriously for the past 30 years, those "subsets" would have been defined by now and drugs would have been approved. Now, CDC is finally running the study. Pleassssssssse.

Dont u just love how the CDC uses the issues of subsets to use as excuses for the issues.. Issues it choose to ignore all this time which it should of sorted out decades ago!!! The CDC just helps to keep the confusion going on by refusing to separate ME and CFS and hence to start help breaking down the subsets. How is a very varied group of patients who have completely different symptoms be studied to find biomarkers if they wont even make this shift so biomarkers can be more easily found.

Also I do think the governments should help fund "ME"Ampligen studies too i they are going to reject this drug entirely when it is obviously greatly helping some who have ME, bad drug effects (unless it kills you) do not equal having bad ME and what that puts one throu. I think it should of been approved conditionally for "severe ME" patients to at least be able to try. (ME Ampligen study.. as that is the subgroup which are most likely to have good affects from the drug due to the viral etc presentations in that group).

When will the American government stop making excuses and stop the rest of the world being held back by what its putting out there and what is doing (my Australian doctors check out the CDC website for info so the CDC site is responsible for some of the shocking care Ive got). When will it get serious about helping severe ME patients.. yes this group may be in the minority but its this group which needs the help the most. The government isnt serious about helping us right now. Im all for a world wide law suit if it ever happens.. I'll be in it.. for the affects of what the America Gov info has done on me and my illness and the shameful playing down of an illness which has serious affects on some.

 

[alex3619]

Dr. Unger opposed any endorsement of the CCC or ICC at the last CFSAC meeting. Following Dr. Fletcher's comment, “I’m sorry; I think this is some kind of mysterious delaying tactic that I don’t understand. We’ve had the same conversation before. It’s a circular conversation,” Dr. Unger defended her umbrella definitions:

Neither the CCC nor the ICC panel of experts has accepted her “broad umbrella with various degrees of severity” assessment. Like so many patients, Dr. Unger holds that “we have to be unified.”

Broad umbrella definitions and a unified view are mutually exclusive. With even a narrow view we can't be unified. With an any definition under the sun view, unification is only possible under the influence of a grab-bag of stuff from your local drug dealer, um, big pharma rep.

ME and CFS are politicized. Thats history. We need to coalesce around specific goals, yes, but unification? Here is what will unify us though: a biomedical breakthrough leading to a cure. Oh, wait, under an umbrella view only some of us will be cured, and though the rest of us will be happy about that we will not be unified.

 

[Nielk]

If Unger and the CDC are adamant in keeping their Oxford wastebasket definition, we, as a patient group, need to unify and separate ourselves from that definition and CFS name. We need to regroup under the CCC/ICC definition and adopt the ME name.

I wonder what outcome the Ampligen studies would have shown, had they used the CCC/ICC criteria for patient pools?

In my mind, we will not get anywhere trying to find biomarkers or treatments until this illness that we have is well defined.

 

[lartista]

Hi You guys... I live in Italy but just came in for XMAS on Dec 20th... Can anyone provide me with links for the Dec 20th meeting video recorded... What I am asking is for a link to watch what ever part of the day was video recorded and uploaded...? THANKS, Francesca I am out of the loop on what was said that day... But I will say one thing I noticed and I DID NOT LIKE... The board is to have 12 people I beleive. The board only has 6! Then for the meeting without me seeing public-ally who they chose and why they chose the FILL IN board members to arrive and vote. When I was in public office for 9 years, and if we had board vacancies, we would let them sit. But If a negative angry person showed up, the board would scramble to find other candidates and prep them. Then when the person the board was not crazy about accpeting their application for a vacancy, the board would make it all look good like it was fair, but they would have all made up their mind in advance, who they were going to vote for... and yes... WE DID NOT HAVE LEGAL PERSON to discuss this outside of board meetings but it HAPPENED!!!! This is how I was 1st appointed to the board I sat on for 9 years. thereafter I ran a clean campaign each re-election... but I saw what the original board did to get me on the board when an angry person showed up.

 

[Ember]

We need to regroup under the CCC/ICC definition and adopt the ME name.

How do we regroup as a subgroup?

 

[Seven7]

I was thinking the same. If we start ME subgroup and keep all the things moving forward as such, then the name will stick?!?!?

 

[Chris]

I think this disease or diseases has/have to be better understood before it makes a lot of sense to talk about unification. We know that there is overlap between ME and FM, for instance, but also significant difference. The International definition is a great attempt at a unified description, and I do fit comfortably within it, but there are others who also fit whose symptoms are rather differently balanced from mine. For instance, my symptoms are heavily weighted on the cardiac/autonomic side (serious PENE, OI), but very light on things like sore throats, flu like symptoms, swollen lymph glands, muscle pain, etc. I think a heavy effort to "unify" at this stage could end up being counterproductive. We need lots more good research, and then maybe the unified / disparate group question will begin to answer itself--maybe, we hope. Chris

 

[Seven7]

Ok can Somebody explain Hunger reasoning? Isn't there fatigue already defined in the ICD code? We are not letting the fatigue people behind they will fall in the right ICD-10 category or maybe I dont understand this codes right.

http://www.icd10data.com/ICD10CM/Codes/R00-R99/R50-R69/R53-/R53.83

2012 ICD-10-CM Diagnosis Code R53.83

Other fatigue

• R53.83 is a specific ICD-10-CM diagnosis code that can be used to specify a diagnosis.
• ICD-9-CM will be replaced by ICD-10-CM beginning October 1, 2013, therefore, R53.83 and all other ICD-10-CM diagnosis codes should only be used for training or planning purposes until then.

Applicable To

• Fatigue NOS
• Lack of energy
• Lethargy
• Tiredness

ICD-10-CM R53.83is part of Diagnostic Related Group(s) (MS-DRG v28.0):

• 947 Signs & symptoms with mcc
• 948 Signs & symptoms without mcc

Convert ICD-10-CM R53.83 to ICD-9-CM
The following ICD-10-CM Index entries contain back-references to ICD-10-CM R53.83:

• • Exhaustion, exhaustive(physical NEC) R53.83
  • Fatigue R53.83

general R53.83

• • Lack of

energy R53.83

• Lethargy R53.83
• Overstrained R53.83
• Overworked R53.83
• Prostration R53.83
• Tiredness R53.83
• Vitality, lack or want of R53.83

 

[Nielk]

The international experts have unified and have come up with the ICC. As far as I understand, they have also dropped the name CFS and identified with ME. This definition is a lot more comprehensive than the simple Oxford definition. Why can't we, as a patient group, define ourselves under this umbrella that the ICC has provided for us?

 

[heapsreal]

we dont want to end up in the DSM V near the mathematics disorder.

 

[August59]

Until the money is put out there for meaningful research by serious scientist looking for the true and real cause of this disease, instead of research that doesn't mean a damn thing after it is done other than wasting money. We have to have scientific proof of what is going on and I want be surprised if there are 4 or 5 different subsets. When the true fundamental cause of these diseases are found and proven the political bigwigs will keep making larger and larger umbrellas for themselves and cohorts.

The down side to these larger umbrellas is that it pushes doctors away from it because they are not about to look at treating something so vaquely defined.

I've even head that Dr. Montoya is getting significant backlash for his amount of time spent on CFS research. This could very well just be here say, so take it with a grain of salt. I hope Dr. Montoya can stay focused on our research, but I am a little concerned with his latest pathogen study that started out with 450 participants and started blood draws 2 1/2 years ago and now has raised the number of participants to 600. I can only imagine how the participants that gave samples 2 1/2 years ago feel. As far as I know there has not been a comment as to why it is taking this long and why it was raised to 600 participants.

 

[Kanae]

The international experts have unified and have come up with the ICC. As far as I understand, they have also dropped the name CFS and identified with ME. This definition is a lot more comprehensive than the simple Oxford definition. Why can't we, as a patient group, define ourselves under this umbrella that the ICC has provided for us?

I did. I asked my medical practitioner for and got (positive) assessment for ME under the ICC.