The Strategy Behind Renaming and Redefining CFS

[Bob]

@Ecoclimber, I'm just disagreeing with your opinion. Please don't take my comments personally.

 

[Ember]

I have absolutely no problem with considered & thoughtful critiques of the IOM report.... I find the blog to be ill-informed and possibly harmful to my own interests, so I won't refrain from criticising it.... Also, the core SEID criteria are almost identical (but much better in my opinion) to the core CCC symptoms.... (I haven't yet seen anyone explain why they are inferior to the CCC.)... This is too important for knee-jerk reactions.... Please give us at least a week to digest it.

Jerrold Spinhirne is noted for his well-referenced work. I've quoted his recent comments and provided links to his posts on another thread where you've expressed your own views concerning the IOM Report. Jeannette Burmeister has recently presented grounds for considering the IOM definition to be inferior to the CCC. It isn't for you to decide when others are allowed to express their views.

 

[Bob]

It isn't for you to decide when others are allowed to express their views.

So, that will be why I haven't made decisions on behalf of others on this thread. I don't think your comment is helpful, and it's not an accurate reflection of the opinions that I've expressed.

 

[Bob]

Jeannette Burmeister has recently presented grounds for considering the IOM definition to be inferior to the CCC.

I'll have a look at that, thank you.

 

[Ember]

But it's OK for you to decide when I can express my views in relation to other people's views?

I've done nothing of the sort. I commented, "To me, your statement sounds closer to a personal attack than to an informed response."

 

[alex3619]

I am one who completely disagrees with the importance of the codes (ICD or otherwise). Its almost irrelevant. ICD or DSM codes are bureaucratic codes of little or no scientific merit. Now they do bias what doctors write down on forms, but not how they view patients to any great extent. From my reading doctors do not consider the codes to have much validity. Diagnostic criteria are more important, as are treatment criteria. Its slowly becoming the case that evidence based meta-analyses are also important - and they are far more of a worry than an ICD code when they are done badly.

Codes can be changed, added or removed, and for the most part most doctors simply wont care. They will just add whatever code they want to the forms.

To create change we have to go far beyond any codes.

 

[Bob]

Jeannette Burmeister has recently presented grounds for considering the IOM definition to be inferior to the CCC.

In her blog, Jeannette says: "..failing to exclude primary psychiatric disorders is absurd and even dangerous.."
And she says that depression in ME patients may be present but should be secondary to the ME: "..depression is secondary, i.e., it followed the onset of, and was caused by, myalgic encephalomyelitis."

However, the CCC allows for comorbid (not only secondary, as far as I can see) depression and some other psychiatric disorders and even somatization. And it even says that depression can precede the development of ME/CFS by years:

"Nonpsychotic depression (major depression and dysthymia), anxiety disorders and somatization disorders are not diagnostically exclusionary, but may cause significant symptom overlap."

"Co-Morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), TemporomandibularJoint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities MCS), Hashimoto’s thyroiditis, Sicca Syndrome, etc. Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be “overlap syndromes.”"


In her blog, Jeannette Burmeister goes onto say: "The issue I am discussing here—psychiatric comorbidities—is so pivotal and potentially disastrous that I felt it necessary to flag it for the community right away."

However, she is/was an advocate of the CCC: "This effort is redundant because we already have a research definition that has been adopted by our experts, the Canadian Consensus Criteria."

Jeanette says that depression should be secondary to ME, and should follow the onset of ME, but the CCC says that depression can be comorbid and can precede the onset of ME/CFS. (I'm not sure what the IOM have to say about depression, except that depression can be comorbid.)

So, I'm confused. This really doesn't explain to me why the new criteria are inferior to the CCC. But perhaps I've not understood something, seeing as it's all quite complex.

Unless I'm failing to understand something here, perhaps this is another example of blogging about the new criteria before taking time to consider the full implications of the new criteria, and considering the full context.

And, before I'm accused of anything, this isn't a "personal attack" on Jeannette Burmeister. I greatly value her advocacy work, and I'm grateful for what she does. I'm simply critiquing the contents of a single blog, and expressing my confusion in relation to a complex issue.

 

[Wally]

I am one who completely disagrees with the importance of the codes (ICD or otherwise). Its almost irrelevant. ICD or DSM codes are bureaucratic codes of little or no scientific merit. Now they do bias what doctors write down on forms, but not how they view patients to any great extent. From my reading doctors do not consider the codes to have much validity. Diagnostic criteria are more important, as are treatment criteria. Its slowly becoming the case that evidence based meta-analyses are also important - and they are far more of a worry than an ICD code when they are done badly.

Codes can be changed, added or removed, and for the most part most doctors simply wont care. They will just add whatever code they want to the forms.

To create change we have to go far beyond any codes.

@alex3619,

I believe the ICD Codes are important when you are dealing with reimbursement under an insurance plan. The illness code could result in a particular service not being reimbursed. Here is an explanation of how medical billing works in the U.S. - http://healthinsurance.about.com/od/healthinsurancebasics/a/insurance_codes_basics.htm

I started working on a project with a couple of our ME/CFS specialists to evaluate the coding that was required to get specialized testing (i.e. VO2 Max, Neuro Psych, Brain Imaging) approved by different insurance companies (unfortunately the project stalled due to other projects and the declining health of one of the participants ). It is definitely a project that would be helpful for patients and the doctors who treat them, especially if the workload for this illness is suppose to fall back onto the shoulders of Primary Care doctors.

The codes are the key and they can be closely guarded, but it can be cracked it just takes a lot of time and persistence. You often cannot get to the answers until you have a claim denied and then pursue the reasons behind the denial by going through an appeal process. You have to go through this process with each insurer unless another way is made available to access this information. In the U.S., insurance companies are regulated at the State level except when coverage is provided by Medicare, then the Federal government makes the rules.

So before we dismiss the importance of coding, I think we need to understand if a change in codes could have a financial impact on patients as to their insurance coverage. Not sure if other countries would have these type of insurance billing concerns, but here in the U.S. (and this is where the greatest impact of implementation of recommendations in the I.O.M Report could be felt) I would not feel comfortable dismissing the potential significance of such code changes.

 

[Bob]

I believe the ICD Codes are important when you are dealing with reimbursement under an insurance plan.

Yes, this is something that Europeans and possibly Australians(?) sometimes forget, as this issue simply doesn't affect us. Hardly anyone in the UK has private insurance.

 

[Scarecrow]

Since aetiology is unknown, I think that has to point to the new classification.

On consideration, unknown aetiology is irrelevant since diseases aren't classified by cause but rather by the (primary) system they affect. Being clearly multi-systemic does present a problem with ME/CFS (SEID) until more of the pathophysiology dots are joined up.

There is a classification under ICD-10 for new diseases of XXII Codes for Special Purposes; U00-U49 Provisional assignment of new diseases of uncertain etiology or emergency use but ME/CFS (SEID) isn't new.

The committee were quite clear in their first recommendation so a new F code can surely be ruled out.

A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10), that is not linked to "chronic fatigue" or "neurasthenia"

That takes us back to G. The neurologists ain't going to like it but where else? Maybe it would do neurologists some good to have their ME/CFS (SEID) patients wheeled in in a chair or on a trolley. Much harder to dismiss the severely ill than someone like me who can walk in under their own steam.

A new G code is the only one that makes sense to me but that's just an opinion based on my own experience rather than it being medically informed.

[Edited: perhaps we'll all be surprised and it'll stay under G93.3. That would be odd.]

[Edited again: perhaps the WHO need a new WTF code, i.e. we don't know WTF it is yet]

 

[Sidereal]

It might go under R: Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified

 

[Sidereal]

Yes, this is something that Europeans and possibly Australians(?) sometimes forget, as this issue simply doesn't affect us. Hardly anyone in the UK has private insurance.

Also, the neurological G93.3 classification has not prevented psychiatric treatment and sectioning of ME patients in Europe and elsewhere. Practically speaking, it doesn't matter or help the patients if a condition is classified under the neurology heading if the majority of practising neurologists don't consider it to be neurological. I think the fixation on ICD-10 codes in some sections of our community is misplaced.

 

[Scarecrow]

It might go under R: Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified

But we have a tonne of signs and symptoms!

The word 'wastebasket' was invented for that category. It would be disastrous for insurance claims.

 

[Sasha]

[Edited again: perhaps the WHO need a new WTF code, i.e. we don't know WTF it is yet]

Of all the suggestions I've seen, I think this one is my favourite.

 

[alex3619]

I believe the ICD Codes are important when you are dealing with reimbursement under an insurance plan.

This is right, and has several sides to it. First, doctors can use the wrong codes. That will happen regardless of the what the ICD codes are.

The second is the rationale behind why insurance companies limit payout on psych disorders. I have been reading a bit about this lately. Its not because its psychiatric. Its because there are no objective ways to prove the diagnoses are real. So that applies to CFS and ME too. This is a failure in the code concept with ME because the core pathophysiology is objectively identifiable, though the diagnosis isn't. This problem will continue with SEID. Once the objective pathophysiology becomes widely recognized then I think things will improve.

I do think codes alter reimbursement and coverage. Yet its not the code, but insurance policy about the code. If they don't like the idea, then a new code will not help. We have to sell the medical community,, and insurance will follow. The fact they are now losing court case after court case on CFS may be the beginning.

 

[Wally]

I do think codes alter reimbursement and coverage. Yet its not the code, but insurance policy about the code. If they don't like the idea, then a new code will not help. We have to sell the medical community,, and insurance will follow. The fact they are now losing court case after court case on CFS may be the beginning.

@alex3619,
I understand where you are coming from and that you have an interest in the subject, but the issue of coding and reimbursement for insurance (at least in the U.S.) is much more complex and "politically" controlled than most people understand or have experience with.

I am not trying to say that there cannot be a discussion about the Codes rather I am trying to give people a "subtle" hint that there may be much more below the surface here and it may be prudent to reserve judgement about the significance of this issue.

I would also like to make the suggestion that it could be advantageous to patient advocacy efforts, if some of the discussions about the ICD codes be conducted through private discussions with those (inside and outside of the ME/CFS Community) who have experience/expertise in insurance billing and coverage issues.

 

[Ember]

I don't think your comment is helpful, and it's not an accurate reflection of the opinions that I've expressed.

Thank you for editing your earlier posts.

 

[Ember]

I'm simply critiquing the contents of a single blog, and expressing my confusion in relation to a complex issue.

Nielk started another thread several days ago for the purpose of discussing Jeannette's blog.