Dr. Bateman answers IOM questions from the community: Part 1

ClarkEllis submitted a new blog post:

Dr. Bateman answers IOM questions from the community: Part 1

Clark Ellis brings us Part 1 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community ...


The Institute of Medicine recently published its report into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). One of the committee members, Dr. Lucinda Bateman, graciously agreed to answer questions submitted by members of the patient community.

Questions were submitted on the Phoenix Rising forum and they can all be viewed here.

Questions have been arranged roughly by topic and will be published in two parts.

This part, the first, covers questions on the committee and IOM process, and the IOM's diagnostic definition.

Part 2 will cover the clinicians' guide, the new disease name systemic exertion intolerance disease (SEID) that the IOM has proposed, international classification of diseases (ICD) coding, and miscellaneous topics.

The Committee and the IOM

Q:

When the Department of Health and Human Services contracted the IOM to redefine ME/CFS, it was met with great opposition from the ME/CFS community. Experts, advocates and patients alike wrote letters and voiced their complete opposition against the government creating another criteria when we have a good, proven criteria in the Canadian Consensus Criteria (CCC).

Some of the members of the IOM panel signed the 50 expert letters in opposition of the IOM process. Why did you decide to accept the invitation to serve on the IOM panel when you knew that the community was trying to put a stop to it?

Dr. Bateman:

It's pretty simple. I read the statement of task and changed my mind. For 20 years I have been dreaming about putting together a "think tank" of experts who could critically review what we know and use combined expertise to recommend a path forward. While the IOM contract wasn't exactly what I had envisioned, it had many of the ingredients necessary for success that we haven't had access to — outside experts, staff support and funding. I also felt that the IOM would be able to provide the most "neutral" opinion of the evidence base.

Q:

Has the IOM committee considered soliciting questions about its report via the official IOM ME/CFS website link and posting answers to some or all of the questions that are received from the public on that site?

Dr. Bateman:

I don't think so. The IOM is a non-profit organization that accepts a discreet project or contract, plans and implements the project, creates and publishes a peer review report, and then moves on to a new project. They accepted a massive amount of public input that was considered in the ME/CFS report, a document that now recommends new diagnostic criteria based on the high quality published evidence.

It isn't the responsibility of the IOM to re-evaluate or defend the report based on public comment. The report was a specific task commissioned by DHHS. Now it is peer reviewed published scientific literature that DHHS can utilize to make policy and funding decisions. Most of all, it will serve as an immediate resource for physicians.

Q:

Will the IOM fight and defend their report to physicians who discredit it (often publicly)? What support can we expect? [original wording and context]

Dr. Bateman:

No. The IOM doesn't need to defend the report. It is a summary of the literature based on a standard plan for reviewing the evidence. The recommendations arise directly from the summary of the cited literature, clearly outlined section by section.

The IOM report does challenge physicians and scientists to use what is presented in the report to pursue additional answers about almost all aspects of the illness. The IOM report states clearly that more research and funding are needed, that the report has limitations because the existing evidence base has limitations, and that another funded literature review to revise the diagnostic should be done in no more than 5 years.

There is an expectation that a significant amount of meaningful scientific evidence will be published in the next 3-5 years. I don't know what more we could expect from any academic body.

The Diagnostic Definition

Q:

How confident are you that the sensitivity and specificity of the new criteria are better than any of the other case definitions?

Dr. Bateman:

Sensitivity and specificity must be determined by studies that apply the case definition to patient populations. Obviously, that hasn't been done yet. In my opinion, however, sensitivity and specificity are not well-established for any of the existing case definitions, and the subjective nature of case definition criteria make concrete comparisons a challenge.

Indeed, sensitivity and specificity may be an impossible task when we have subjectively defined and overlapping case definitions. Case definitions are a substitute for diagnosis based on objective diagnostic tests, so the ideal is to move beyond case definitions and toward biomarker discovery that helps us understand pathophysiology and better identify illness subgroups.

The report doesn't make any claims about sensitivity or specificity. The committee's goal was to put the major, persistent, measurable, uniquely combined and previously overlooked symptoms in a simple diagnostic formula that practicing physicians can use to recognize and treat the illness — based on the symptoms reported by patients in multisite studies, backed by research demonstrating the biological basis of the presenting symptoms.

If the diagnostic criteria succeed, and these are indeed a core combination of symptoms, the criteria will have decent sensitivity that is eventually supported by objective markers. If not, the criteria should be revised.

I've heard many complain that the diagnostic criteria don't list exclusionary criteria, and that this will diminish the specificity of the report.

My opinion is the opposite. If physicians are responsible for a differential diagnosis to determine the presence of other conditions, they can't simply order a panel of labs and say they've eliminated other diagnoses. As a clinician who has evaluated and followed hundreds of patients for decades, I can say that the process of differential diagnosis never ends.

It is impossible to list every possible exclusion in diagnostic criteria. Doing so just allows physicians to stop thinking critically about the patient. The IOM report encourages clinicians to make the diagnosis, continue investigations and provide care.

Q:

The IOM diagnostic definition requires that patients have unrefreshing sleep, and that if the symptom is not present at least 50 percent of the time, then the diagnosis of ME/CFS should be questioned. The IOM committee was charged to “develop evidence-based diagnostic criteria for use by clinicians.“ Can you say which study/studies this requirement was derived from? [original wording and context]

Dr. Bateman:

Figure 4-2 in the report (ref: Jason et al., 2013b) shows that 92% of patients in one high-quality study endorsed the symptom "unrefreshing sleep," along with high but sequentially decreasing percentages endorsing "problems falling asleep," "need to nap daily, " problems staying asleep," "waking up early," or sleeping all day/awake all night." When a high frequency (at least 50% of the time) and severity (moderate to severe) were employed, these questions clearly distinguished cases from controls.

In my clinical practice, problems with sleep maintenance plague patients and are often one of the most challenging aspects of treatment. It is amazing to me, that in spite of many sleep studies, whatever the problem with sleep in ME/CFS, it isn't diagnosable by currently used sleep evaluations (polysomnography), based on the published evidence. We need to understand it better.

Q:

Some patients who have ME according to the International Consensus Criteria (ICC) and/or CCC are concerned that they don't fit the criteria for SEID. Is there, or should there be, room for an 'atypical SEID' diagnosis, just as the
ICC allowed for an 'atypical ME' diagnosis? [original wording and context]

Dr. Bateman:

Certainly, but I'm not sure that the concern is warranted. All of the SEID criteria are also CCC criteria in one form or another. It is the Fukuda criteria that will prove to be broader than the SEID criteria, leaving many without the diagnosis of CFS, but those are arguably people who don't have ME/CFS anyway. For example, in my clinic that would be people with depression, mild or moderate fibromyalgia, undiagnosed other medical problems, etc.

Q:

Given that a sore throat and tender lymph nodes are often the earliest to appear, why were these symptoms not in the diagnostic criteria? Won't the omission create the risk of patients waiting till other symptoms appear to get a diagnosis, or doctors refusing to diagnose the illness at its earliest stages? [
original wording and context]

Dr. Bateman:

The sore throat and tender lymph node criteria aren't present in everyone with ME/CFS, even at onset, and the prevalence of these symptoms diminishes with time. People present to physicians at all stages of illness, not just at onset. Making these symptoms required for diagnosis doesn't make sense. Also, the report states that if these symptoms are present, it supports the diagnosis.

Q:

Currently, patients applying for Social Security Disability Insurance (SSDI) are assessed based on symptoms of the Fukuda criteria, such as palpably swollen lymph nodes, sore throat, muscle tenderness and others. These symptoms are not mandatory for a SEID diagnosis. Did the IOM panel discuss how this new criteria might affect patients seeking disability? [
original wording and context]

Dr. Bateman:

Symptoms that are not mandatory are still symptoms that can support the illness. As for the pain symptoms, which can be significant in many patients, especially the severely ill, the diagnosis of comorbid fibromyalgia (widespread hyperalgesia and central sensitization) is often very descriptive and objectively defined.

Q:

Given that muscle weakness/asthenia is a key feature in this illness, why was it not in the diagnostic criteria?

Dr. Bateman:

Actually, while patients feel weak and can have dramatically reduced function, the problem is not exactly muscle weakness by the usual medical definition (hence the “normal” strength exam in most patients). The complaint of weakness or asthenia might be related to abnormal function of the central nervous system, pain, orthostatic intolerance, deconditioning, and PEM, for example. Actual muscle weakness might suggest another diagnosis.

Q:

Unlike the Fukuda, CCC and ICC, the new IOM criteria do not include any exclusions. Dr. Derek Enlander commented to the M.E. Global Chronicle:

"The naiveté of the IOM criteria are the lack of exclusions which are contained in previous criteria. It is peculiar that Lucinda Bateman did not see this problem in her specialist opinion. The IOM criteria as they now stand can include psychiatric induced fatigue or simple fatigue conditions, there are virtually no exclusions."

Can you explain why the panel decided on this move with the risk of including psychiatric conditions? [original wording and context]

Dr. Bateman:

As I discussed above, it is a misconception that the IOM criteria do not require “exclusions” or a differential diagnosis. Physicians are expected to evaluate for other disorders that might completely explain the symptoms, and not make a diagnosis of ME/CFS or SEID if such an illness is identified. The committee decided not to attempt a list of every possible illness that could present with similar symptoms.

It is my own medical opinion that, after routine medical workup has been done (physical exam, ECG, labs, MRIs, mental health screen, etc.), there are very few illnesses, with “normal” tests, that present with such reduced functional capacity, PEM, pervasively disordered sleep, cognitive impairment and orthostatic intolerance. Not depression, for sure.

It would be hard to miss a diagnosis of depression so severe that it caused symptoms resembling ME/CFS. The key is that the combination of core symptoms are mandatory. They must all be present with no other apparent cause after an appropriate medical and mental health workup — a diagnostic process expected of providers.

I’ll also add that people with ME/CFS can and do develop other conditions that contribute to the symptom burden, including depression, menopause, primary sleep disorders and thyroid disorders, for example. Excluding them from an ME/CFS diagnosis would be wrong.

I have many patients that presented with straightforward ME/CFS and went on over the years to develop comorbid conditions which were diagnosed and treated. Don’t they still have ME/CFS?

Q:

The IOM criteria require substantially reduced functional capacity and fatigue, PEM, non-restorative sleep, neurocognitive impairment and/or orthostatic intolerance/ autonomic dysfunction. Does requiring only four criterial symptoms not increase the risk of “including groups of patients that do not suffer from the same disease?"[original wording and context]

Dr. Bateman:

Already answered above.

Q:

Did the IOM panel evaluate whether these diagnostic criteria would be reliable in the diagnosis of the most severe patients who may be bedbound and dependent on caretakers? Put another way, would doctors recognize a severely ill patient as an SEID patient based on the disease description and the criteria provided? [original wording and context]

Dr. Bateman:

The answer is no, the diagnostic criteria were not evaluated for reliability in the most severe patients, because these patients are largely overlooked and not included in the published literature, and the IOM report was generated from this literature. This limitation is recognized and stated in the report, with a call for additional research.

Severely ill patients do have reduced function, activity intolerance, sleep dysregulation, cognitive impairment and orthostatic intolerance. The fact that they have even more symptoms — such as widespread pain and severe central sensitivity — does not preclude a diagnosis using SEID criteria.

Q:

The committee were unable to distinguish between subgroups within ME/CFS, yet by excluding Fukuda CFS patients without PEM from the new diagnostic criteria for ME/CFS, an element of subgrouping was done. My question is in three parts:

a) Did the committee conclude that Fukuda CFS patients without PEM had been misdiagnosed with CFS, and was any consideration given to what will happen to these patients?

Dr. Bateman:

It was recognized that a subgroup, previously diagnosed by Fukuda criteria but without PEM, might be created with the new criteria. In reviewing the existing case definitions, the committee responded to CFS clinicians and patients who communicated strongly that PEM should be a distinguishing feature of ME/CFS, and that it should be a required symptom.

This was supported in the evidence base. As a clinician, I have some ideas about alternate diagnoses for this no-PEM subgroup, but until comparative studies, are done it is only speculation on my part.

Q:

b) In stating that they were unable to distinguish between subgroups and calling for more research, did the committee have a sense that there are subgroups within ME/CFS, but that there was insufficient evidence to identify them at this time?

Dr. Bateman:

Yes.

Q:

c) Did the committee discuss what they felt should happen to Fukuda and Empirical? Did they expect these criteria to be disbanded?

Dr. Bateman:

The IOM committee did not directly address that question or make a recommendation regarding these criteria.

Q:

Was there any discussion of how to evaluate the validity and reliability of these new criteria for this disease prior to roll-out? Same question for the diagnostic tools being recommended if they have not already been evaluated specifically for this disease. If not, shouldn’t that be done before these criteria are rolled out, especially given the lack of recommended biomarkers?

Dr. Bateman:

It was not in the statement of task to do any of those things. The task was to review the literature, and based on the strongest evidence, make recommendations for new diagnostic criteria, on a fairly stringent time schedule. Those tasks are for future research.

Q:

Is SEID intended to cover patients with an existing diagnosis of myalgic encepheomyelits (as described by Dr. Melvin Ramsay and others) and which occurred in outbreaks through the 20th century? Please note, this is not a reference to the CCC or other ME/CFS criteria.

Dr. Bateman:

SEID criteria are intended for current use, for doctors to do better at making the diagnosis in a clinical setting. There was no discussion of anything but using them for this purpose.

Q:

I have had doctors claim in response to the new criteria that all of the symptoms listed there could be psychosomatic or psychological. How would you respond to clinicians who take that view?

Dr. Bateman:

I disagree. The criteria were chosen because they are not only common aspects of illness, but measurable by clinicians and supported by scientific research. Functional decline, disordered sleep, cognitive impairment and orthostatic intolerance are all objective and measurable findings.

We need to improve the tools we use to measure them, but these findings, combined with a typical history and other characteristic symptoms, are how the diagnosis can be made.

Naysayers have always claimed that people with ME/CFS are just experiencing psychological symptoms. That’s nothing new.

Q:

Since it says in the report that the new definition is a clinical one, where does that leave us regarding research criteria? [
original wording and context]

Dr. Bateman:

That was and is not the responsibility of the IOM committee to answer.

Q:

The suggested new name indicates that SEID is a systemic illness. But the diagnostic criteria don't include a systemic range of symptoms. Doesn't that contradiction send a confusing message about this disease, to doctors in particular?

Dr. Bateman:

I disagree. Fatigue, reduced function and orthostatic intolerance in particular are each “systemic.” The symptoms in combination create a multisystem illness as well.

***************************************************************************************************​

A big thank you to Dr. Lucinda Bateman for her answers and willingness to engage with patients.

Thank you also to members of the patient community for taking part and submitting questions. Please note that it was not possible to include every question in the interview, but we included as many as we could.

Some of the questions were shortened or reworded to improve readability of the article and to ensure that we could cover as many questions as possible. In doing so, I tried to maintain the spirit of each question. In such cases, a link to the specific original question has also been provided for full context.

Please also note that if your question did not appear in the interview then that may have been because Dr. Bateman has already provided an answer in her earlier response to an article by Dr. Leonard Jason, or the answer to the question may be evident from the IOM report itself.

Part 2 will be published shortly and will cover the clinicians' guide, the proposed new name: systemic exertion intolerance disease (SEID), international classification of diseases (ICD) coding, and miscellaneous topics.


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Comments

Starting October 2015 we will have an ICD code in the U.S. for ME; ICD-10-CM G93.3
I'm sure glad I'm not writing medical billing software any more. The changeover to an entirely new coding scheme is going to be a cluster-you-know-what.
 
Starting October 2015 we will have an ICD code in the U.S. for ME; ICD-10-CM G93.3
When I look that up it says that code is for Post Viral Fatigue Syndrome and discusses "CFS" at some length. It says it excludes CFS NOS, but the CFS NOS code contains the same Clinical Information about CFS as the Post Viral Fatigue Syndrome code (G93.3), which makes no sense in my mind. If the two (PVS and CFS NOS) exclude each other, why do they have exactly the same wording in the Clinical Information sections. o_O

How is any of that a code for ME?
 
When I look that up it says that code is for Post Viral Fatigue Syndrome and discusses "CFS" at some length. It says it excludes CFS NOS, but the CFS NOS code contains the same Clinical Information about CFS as the Post Viral Fatigue Syndrome code (G93.3), which makes no sense in my mind. If the two (PVS and CFS NOS) exclude each other, why do they have exactly the same wording in the Clinical Information sections. o_O

How is any of that a code for ME?
This blog explains it - http://twenty-years-and-counting.blogspot.com/2015_02_01_archive.html
 
When I look that up it says that code is for Post Viral Fatigue Syndrome and discusses "CFS" at some length. It says it excludes CFS NOS, but the CFS NOS code contains the same Clinical Information about CFS as the Post Viral Fatigue Syndrome code (G93.3), which makes no sense in my mind. If the two (PVS and CFS NOS) exclude each other, why do they have exactly the same wording in the Clinical Information sections. o_O

How is any of that a code for ME?
It's the same in the WHO ICD, G93.3 is PVFS, and benign myalgic encephalomyelitis is indexed to it. There is no distinct CFS code in the WHO ICD as far as I know, it just links R53 (malaise and fatigue) to either G93.3 (ME) or F48.0 (neurasthenia), among other causes of fatigue. G93.3 doesn't list any exclusions, but F48.0 excludes ME. It was a US ICD-10-CM thing to wedge CFS in there and code it as a distinct disease.
 
Starting October 2015 we will have an ICD code in the U.S. for ME; ICD-10-CM G93.3
When I look that up it says that code is for Post Viral Fatigue Syndrome and discusses "CFS" at some length. It says it excludes CFS NOS, but the CFS NOS code contains the same Clinical Information about CFS as the Post Viral Fatigue Syndrome code (G93.3), which makes no sense in my mind. If the two (PVS and CFS NOS) exclude each other, why do they have exactly the same wording in the Clinical Information sections. o_O

How is any of that a code for ME?
There is no clinical descriptive text for either PVFS (G93.3), BME (inclusion term to G93.3) or CFS NOS (R53.82) within ICD-10-CM (or within the WHO's ICD-10).

The reference given in the IOM prepublication version of the Report was for a commercial data scraping site which aggregates content from a variety of sources, including non ICD sources, not the official ICD-10-CM Release for FY 2015, which can be downloaded from the CDC's ICD-10-CM page.
 
Dr. Bateman:

As I discussed above, it is a misconception that the IOM criteria do not require “exclusions” or a differential diagnosis. Physicians are expected to evaluate for other disorders that might completely explain the symptoms, and not make a diagnosis of ME/CFS or SEID if such an illness is identified. The committee decided not to attempt a list of every possible illness that could present with similar symptoms.
Indeed when I looked up the IOM criteria's clinicians' guide, it states:

• ME/CFS (SEID) is a serious, chronic, and systemic disease that frequently and dramatically limits the activities of affected patients.
• A thorough history, physical examination, and targeted workup are necessary to determine a differential diagnosis and are often sufficient for diagnosis of ME/CFS (SEID).
• Physicians should diagnose ME/CFS (SEID) if diagnostic criteria are met following an appropriate history, physical examination, and medical workup, including appropriate specialty referrals.
Yet, the IOM criteria are billed to be a set of criteria with a diagnosis to be made; not an diagnosis by exclusion like the other criteria.

When I look at the CCC Primer, it states:

Although the symptoms of a number of diseases can mimic ME/CFS, the presence of post-exertional symptom exacerbation, a key feature of the illness, increases the likelihood of ME/CFS as the correct diagnosis. Table 3 lists a number of medical conditions that need to be considered in the differential diagnosis.
It goes on to list a table of possible exclusionary diagnosis.http://www.iacfsme.org/portals/0/pdf/primerfinal3.pdf p. 16

So, is the only difference that the CCC actually lists a table of possible diagnosis and the IOM leaves it up to the individual clinicians to figure it out? Why do they bill it then as not an exclusionary diagnosis? I see no difference in this between the CCC and IOM except that the CCC includes a chart.
 
Okay, so let me see if I have this right.... ME is not actually listed as a codable condition in either the WHO ICD or the US ICD-10-CM, but Benign (hah!) Myalgic Encephalomyelitis is indexed (along with Iceland Disease and Akureyri Disease) as an alternative name to Post Viral Fatigue Syndrome in both? So ME = PVFS?
 
When I look that up it says that code is for Post Viral Fatigue Syndrome and discusses "CFS" at some length. It says it excludes CFS NOS, but the CFS NOS code contains the same Clinical Information about CFS as the Post Viral Fatigue Syndrome code (G93.3), which makes no sense in my mind. If the two (PVS and CFS NOS) exclude each other, why do they have exactly the same wording in the Clinical Information sections. o_O

How is any of that a code for ME?
It's the same in the WHO ICD, G93.3 is PVFS, and benign myalgic encephalomyelitis is indexed to it. There is no distinct CFS code in the WHO ICD as far as I know, it just links R53 (malaise and fatigue) to either G93.3 (ME) or F48.0 (neurasthenia), among other causes of fatigue. G93.3 doesn't list any exclusions, but F48.0 excludes ME. It was a US ICD-10-CM thing to wedge CFS in there and code it as a distinct disease.
In the WHO's ICD-10, BME is the inclusion term to G93.3 PVFS within Volume 1: The Tabular List.

In WHO's ICD-10, CFS is included only in Volume 3: The Alphabetical Index, and indexed to G93.3.

For the U.S. specific, ICD-10-CM, the original (2003) proposal was for PVFS, BME and a Chronic fatigue syndrome, postviral under G93.3

like this:

How the Draft ICD-10-CM had stood in 2003 (PVFS, BME and CFS, postviral under G93.3. CFS, NOS at R53.82)

https://twitter.com/dxrevisionwatch/status/571779906511761408

Around 2004, the "Chronic fatigue syndrome, postviral" was removed from under G93.3, leaving "Chronic fatigue syndrome NOS" orphaned in the R codes, under R53.82.

When the 2007 Release of ICD-10-CM was posted, the proposal looked like this:

How the Draft ICD-10-CM was changed for the 2007 release: PVFS and BME at G93.3. CFS NOS at R53.82:

https://twitter.com/dxrevisionwatch/status/571781001183154176
 
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Okay, so let me see if I have this right.... ME is not actually listed as a codable condition in either the WHO ICD or the US ICD-10-CM, but Benign (hah!) Myalgic Encephalomyelitis is indexed (along with Iceland Disease and Akureyri Disease) as an alternative name to Post Viral Fatigue Syndrome in both? So ME = PVFS?
That's how it is in the WHO ICD-10, yes. It wasn't always this way, see here.
 
Okay, so let me see if I have this right.... ME is not actually listed as a codable condition in either the WHO ICD or the US ICD-10-CM, but Benign (hah!) Myalgic Encephalomyelitis is indexed (along with Iceland Disease and Akureyri Disease) as an alternative name to Post Viral Fatigue Syndrome in both? So ME = PVFS?
That's how it is in the WHO ICD-10, yes. It wasn't always this way, see here.
In the WHO's ICD-10, BME is coded to G93.3 PVFS in the Tabular List (as the Inclusion term to PVFS).

In indexing Chronic fatigue syndrome to G93.3, ICD-10 does not specify whether it views the term as a synonym, sub-entity or “best coding guess” to Postviral fatigue syndrome or to Benign myalgic encephalomyelitis. Nor does ICD-10 specify how it views the relationship between Postviral fatigue syndrome and Benign myalgic encephalomyelitis.

In the U.S.'s ICD-10-CM, BME is also coded to G93.3 PVFS in the Tabular List (as the Inclusion term to PVFS).
 
Okay, so let me see if I have this right.... ME is not actually listed as a codable condition in either the WHO ICD or the US ICD-10-CM, but Benign (hah!) Myalgic Encephalomyelitis is indexed (along with Iceland Disease and Akureyri Disease) as an alternative name to Post Viral Fatigue Syndrome in both? So ME = PVFS?
That's how it is in the WHO ICD-10, yes. It wasn't always this way, see here.
In the WHO's ICD-10, BME is coded to G93.3 PVFS in the Tabular List (as the Inclusion term to PVFS).

In indexing Chronic fatigue syndrome to G93.3, ICD-10 does not specify whether it views the term as a synonym, sub-entity or “best coding guess” to Postviral fatigue syndrome or to Benign myalgic encephalomyelitis. Nor does ICD-10 specify how it views the relationship between Postviral fatigue syndrome and Benign myalgic encephalomyelitis.

In the U.S.'s ICD-10-CM, BME is also coded to G93.3 PVFS in the Tabular List (as the Inclusion term to PVFS).
For a history of the coding of PVFS, ME and CFS in ICD to March 2001, see the CDC document:

A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases

Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, CDC archive document, March 2001.

https://dxrevisionwatch.files.wordpress.com/2009/12/icd_code-cdc-march-2001.pdf
 
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I am still not Clear in ICD world what is SEID
1)ME/CFS = SIED.
2)SEID = replaces ME.
3) We will have 2 ICDs codes: ME + SIED as disticntive entities??!!!

This needs to be clarified. We don't even know what desease we are talkign about.
1) ME/CFS = SEID
2) SEID = partially describes (not replaces) both ME and CFS

It replaces Fukuda with PEM. It leaves out Fukuda without PEM.

It leaves out ME with good sleep. A person could have an ME and SEID diagnosis. A person could have a CFS diagnosis. A person could have a SEID diagnosis. A person could have an ME diagnosis. A person cannot have an ME and CFS diagnosis. A person cannot have a SEID and CFS diagnosis.

A diagram would be helpful here to help visualize this. I will attempt one.

ICD codes (US ICD-10-CM) - the most logical thing would seem to be give SEID a third code.

CFS remains, but SEID would weed out non PEM patients
ME remains under G93.3 and is mutually exclusive from CFS (but not from SEID)
SEID gets a code, which is not fatigue or neurasthenia

This means SEID can't have the same code as CFS or be in the same category
I don't think SEID could go under G93.3 (to replace ME, as it leaves out ME patients with good sleep). G93.3 could be addended to say that a person could have both ME and SEID at the same time.
SEID could get a third code, I would guess in G (diseases of the nervous system). (multiple sclerosis and ME are both in G).
 

Attachments

Dr. Bateman:

It's pretty simple. I read the statement of task and changed my mind. For 20 years I have been dreaming about putting together a "think tank" of experts who could critically review what we know and use combined expertise to recommend a path forward.
I am surprised by this statement since Dr. Bateman was an author of the 2003 CCC as well as the 2011 ICC.
 
...ICD codes (US ICD-10-CM) - the most logical thing would seem to be give SEID a third code.

CFS remains, but SEID would weed out non PEM patients
ME remains under G93.3 and is mutually exclusive from CFS (but not from SEID)
SEID gets a code, which is not fatigue or neurasthenia

This means SEID can't have the same code as CFS or be in the same category
I don't think SEID could go under G93.3 (to replace ME, as it leaves out ME patients with good sleep). G93.3 could be addended to say that a person could have both ME and SEID at the same time.
SEID could get a third code, I would guess in G (diseases of the nervous system). (multiple sclerosis and ME are both in G).

Given that CDC strives to retain legacy ICD codes in order to avoid data loss from previous editions, it would not surprise me if Donna Pickett (CDC) were to advance the need to retain a CFS NOS in the R codes for ICD-10-CM, irrespective of whatever chapter and parent class might be proposed for SEID, and irrespective of whether a unique new code would be created for SEID or if SEID were inserted as an inclusion term under an existing code.


There is the option within ICD-10-CM for creating additional discrete codes under an existing parent class, or renaming the parent class and adding additional codes, for example:

G93.3 [Add new parent class]

G93.31 Postviral fatigue syndrome
G93.32 Benign myalgic encephalomyelitis
G93.33 Systemic exertion intolerance disease
Excludes1 Chronic fatigue syndrome NOS (R53.82)


Note that I am not advocating for such an arrangement but offer it as a hypothetical proposal.

(For the benefit of readers unfamiliar with the two types of ICD-10-CM Excludes)

Source: ICD-10-CM Release FY 2015 Tabular List

"Excludes Notes

The ICD-10-CM has two types of excludes notes. Each note has a different definition for use but they are both similar in that they indicate that codes excluded from each other are independent of each other.

Excludes1

A type 1 Excludes note is a pure excludes. It means 'NOT CODED HERE!' An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is used when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.

Excludes2

A type 2 excludes note represents 'Not included here'. An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together."
 
I am surprised by this statement since Dr. Bateman was an author of the 2003 CCC as well as the 2011 ICC.
Despite the CCC being shared in thousands of dr's offices (at least in Canada) and the MEICC being published in a prominent journL, these 2 never caught up in the larger medicine field. It's pretty sad but Dr Bateman felt it was time to move forward and embrace the opportunity to work with the most reputable IOM to propel the field forward. ( I am not speaking for her, I believe she has said that herself)
 
ICD codes (US ICD-10-CM) - the most logical thing would seem to be give SEID a third code.
To me it's not logical at all unless you can prove that SEID is a third distinct disease from both ME and CFS. As I understand it, the same disease is not supposed to appear in the ICD under mutliple rubrics. This is why we want to know what disease the IOM report is talking about. In my opinion it's already dubious that the ICD-10-CM contains both ME and CFS as two distinct, exclusionary diseases. Where is the evidence for this? CFS has always been poorly described ME that likely picks up both people with ME as well as other sick people.

If the SEID criteria picks up only people with ME, then it should be indexed to G93.3 (BME/PVFS). If it only picks up people with CFS, then it should be indexed to R53.82 (or R53.82 could be renamed to remove the stigmatic name). If it picks up people with both then we really need to stop and ask ourselves what the hell is going on. The same criteria should not describe three different diseases, if in fact they are three distinct diseases, which is what is implied by leaving ME and CFS at different codes and creating a third for SEID.
 
I also want to say that the Soc. Sec. includes some objective tests not included in any criteria, such as high EBV and abnormal readings in MRI. So the criteria does not determine, maybe influence, but not determine what tests can be used to show objective medical impairment in our disease.
Yes, i have been denied twice, first too low ebv titer, second said" you had CFS at one time but no longer" . someone forgot to tell my body that, 27 yrs and still on hold.
I'm sorry if I wasn't clear. I didn't mean a person with our disease can't be denied. I meant to say what objective medical impairment is included in the Soc. Sec. guidelines for this disease is not dependent on disease criteria. EBV titers (as you referred to) is an OMI that, if it's high enough, can be used for this disease. But I don't know of any criteria that requires a certain EBV titer to be diagnosed. Same with abnormal MRI, which can be used as an OMI for Soc. Sec. disability but is not required, to my knowledge, in any Me/CFS criteria.
 
I am still not Clear in ICD world what is SEID
1)ME/CFS = SIED.
2)SEID = replaces ME.
3) We will have 2 ICDs codes: ME + SIED as disticntive entities??!!!

This needs to be clarified. We don't even know what desease we are talkign about.
Do we have an ICD code for ME in the US? I think not. So the only ICD code change question in the US would be whether we add a SEID code and still leave CFS, or whether we drop the CFS code when we add SEID.
Yes, we do. G93.3 under PVFS is Benign ME.
 
ICD codes (US ICD-10-CM) - the most logical thing would seem to be give SEID a third code.
To me it's not logical at all unless you can prove that SEID is a third distinct disease from both ME and CFS. As I understand it, the same disease is not supposed to appear in the ICD under mutliple rubrics. This is why we want to know what disease the IOM report is talking about. In my opinion it's already dubious that the ICD-10-CM contains both ME and CFS as two distinct, exclusionary diseases. Where is the evidence for this? CFS has always been poorly described ME that likely picks up both people with ME as well as other sick people.

If the SEID criteria picks up only people with ME, then it should be indexed to G93.3 (BME/PVFS). If it only picks up people with CFS, then it should be indexed to R53.82 (or R53.82 could be renamed to remove the stigmatic name). If it picks up people with both then we really need to stop and ask ourselves what the hell is going on. The same criteria should not describe three different diseases, if in fact they are three distinct diseases, which is what is implied by leaving ME and CFS at different codes and creating a third for SEID.
Agreed. And so what to do with and where to out SEID means we need more clarity on the intent of the IoM committee or from a science-based decision from someone else in authority, but whom?

By the way, if the SEID recommendations are followed, it would not be in the R53 code under "Fatigue." But, considering it's multisystem nature, sure would be nice to have had some science-based guidance on where it should go. And by the way, someone must make a proposal to the US government NCHS for any addition or change to happen.
 
Q: Did the committee discuss what they felt should happen to Fukuda and Empirical? Did they expect these criteria to be disbanded?

Dr. Bateman:

The IOM committee did not directly address that question or make a recommendation regarding these criteria.

Q: Since it says in the report that the new definition is a clinical one, where does that leave us regarding research criteria? [original wording and context]

Dr. Bateman:

That was and is not the responsibility of the IOM committee to answer.
I really do appreciate Dr Bateman taking the time to engage with us. However (there's always a "but") these two answers are diplomatic and evasive. It is not believable that these issues were not discussed. I expect these issues were hotly debated and remained unresolved due to some perceived necessity for consensus. A separate dissenting opinion would've given us some insight into the actual discussions and allow us to better understand the rationale for their decisions.

I am particularly disheartened that the committee apparently refused to consider their report's impact on research criteria simply because it wasn't on the work order. If I take my truck to a repair shop for a new muffler and the mechanic sees a tire is almost flat but doesn't fix it or tell me about it because it wasn't on the work order, I'm not going to be a happy customer.

Was the panel hired to blindly follow orders or to put on their thinking caps? I guess that's a question only HHS can answer. And they ain't talkin'.

In the absence of transparency we are forced to resort to speculation and jumping to conclusions. I doubt very much this was the intention of Dr Bateman and the other folks on the panel.
Well, this is speculation, but I can see where the chairman, Dr. Clayton, would have reigned in any discussion or debate on topics outside the scope. It's hard enough to get a 15-person consensus on the particular questions out to them. Getting the group to stay on task is very common to get to the goal in the time allowed. Also, remember, the P2P was supposed to be handling the research definition aspect.