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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 …

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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.
[appeal]?
 

{ 63 comments… add one }

  • taniaaust1 April 2, 2015, 9:30 am
    Nielk

    Starting October 2015 we will have an ICD code in the U.S. for ME; ICD-10-CM G93.3

    One really has to wonder if the IOM thing got done when it did due to knowing that was happening, otherwise ME may of become accepted there esp since we all not long ago (when considering how fast or I rather should say, not fast medicine stuff moves) got the International ME criteria.

    There was a strong possibility that more and more people may of started using that code.
    ….

    Thanks Dr Bateman for answering peoples questions.

  • taniaaust1 April 2, 2015, 9:47 am
    Kati

    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. )

    Ive read something like it takes medicine around 15 years (it may of been 17 years) to catch up on what is going on in science etc. So maybe the CCC was about to just come into its own when the IOM happened (as we know we did get experts finally universally agree on it and sign that letter calling for it).

    Anyway, in things to do with medicine and change, there is usually a big time delay. This field moves slowly with change.

  • Dx Revision Watch April 2, 2015, 9:50 am

    Nielk said:

    "Starting October 2015 we will have an ICD code in the U.S. for ME; ICD-10-CM G93.3"

    taniaaust1

    One really has to wonder if the IOM thing got done when it did due to knowing that was happening,

    But this was hardly a recent decision on the part of NCHS!

    CMS commissioned a draft adaptation of WHO's ICD-10 in 1995. The entire draft of the Tabular List of ICD-10-CM and the preliminary crosswalk between ICD-9-CM and ICD-10-CM were made available on the NCHS website for public comment between December 1997 through February 1998.

    The intention to retain BME under G93.3 was discussed in the March 2001 CDC document.

    Field tests for ICD-10-CM were held in the summer of 2003.

    A draft of ICD-10-CM was posted in 2003:

    https://dxrevisionwatch.files.wordpress.com/2015/03/icd-10-cm-draft-2003.pdf

    The issue of the coding of PVFS, BME and CFS NOS has been discussed at two ICD-9-CM C & M meetings (2010/11), when alternative proposals for the coding of CFS were presented by a patient advocacy group and by CDC, themselves.

    Since 2010, annual releases of ICD-10-CM have been posted on the CDC website.

    It's been apparent since 1997 that NCHS had chosen to retain the G93.3 codes inherited from ICD-10.

    There has been a code freeze in effect since 2011 which severely limits modifications to the code set.

    If HHS or CDC or any other agency were looking to rid ICD-10-CM of G93.3 BME, why wait until a code freeze is in effect to commission a potential code changing report?

    They could have gotten rid of G93.3 BME at any time between 1997 and the enforcement of the code freeze, in 2011.

    (The partial code freeze is intended to facilitate provider and payer preparations for transition from ICD-9-CM to ICD-10-CM by providing a more stable code set.)

    BTW, the original implementation date for ICD-10-CM was proposed for October 1, 2011.

    This was subsequently delayed until October 1, 2013 (to allow more time for provider and payer preparations). It was then delayed a further year, to October 1, 2014, then a further year, to October 1, 2015 (due to the signing into law of a piggyback clause in the HR 4302 PAM Act 2014).

    Had it not been for these delays, the U.S. would already be using a code set that includes BME as the codeable inclusion term under G93.3 PVFS.

  • medfeb April 2, 2015, 1:56 pm

    As I understand it, we have a code today in ICD-9-CM for ME (listed as benign myalgic encephalomyelitis) but doctors rarely use it.

    The index file of the 2011 ICD-9-CM on the NCHS website contains the following term, indexed to code 323.9
    Encephalomyelitis (chronic) (granulomatous) (myalgic, benign) (see also Encephalitis)

    the code 323.9 is indexed to this code in the tabular list of the ICD-9-CM
    323.9 Unspecified cause of encephalitis, myelitis, and encephalomyelitis
    which falls under the section
    Inflammatory diseases of the central nervous system (320-326)"

    The index file is Dindex12.zip and the tabular listing is Dtab12.zip – both are at this link
    ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD9-CM/2011/

  • Ember April 2, 2015, 5:35 pm

    Dr. Bateman:

    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 (sic) orthostatic intolerance.

    Are these tests considered to be part of a routine medical work-up? ECG, MRIs and a mental health screen aren't mentioned in the Report Guide for Clinicians. Neither are lab tests.

  • Ember April 2, 2015, 6:28 pm

    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.

    Reading section by section, I can't find that the summary of the cited literature supports the Committee's conclusions and recommendations. A critical analysis of the report doesn't seem to yield consistent criteria by which core symptoms are differentiated from symptoms not considered core.

  • Ember April 3, 2015, 7:38 am
    Nielk

    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…. 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?

    The Report Guide for Clinicians doesn't explicitly suggest that clinicians use the CCC list of exclusions, but the IOM report offers this advice with respect to comorbidies:

    The committee decided against developing a comprehensive list of potential comorbid conditions, but points to conditions that clinicians may wish to consider that have been identified by the ME-International Consensus Criteria (ME-ICC) and the CCC, including fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, irritable bladder syndrome, Raynaud’s phenomenon, prolapsed mitral valve, depression, migraine, allergies, multiple chemical sensitivities, Sicca syndrome, obstructive or central sleep apnea, and reactive depression or anxiety.

    The Report Guide fails to provide such guidance.

  • Ember April 3, 2015, 10:01 am

    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 (sic) orthostatic intolerance. Not depression, for sure.

    As the more restrictive of the two definitions, the ICC lists fewer exclusions than does the CCC:

    Exclusions [ICC]: As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patient's history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded. Paediatric: 'primary' school phobia.

    Differential Diagnosis [ICC]: When indicated on an individual basis, rule out other diseases that could plausibly simulate the widespread, complex, symptom pathophysiology defining ME. E.g.: Infectious disorders: TB, AIDS, Lyme, chronic hepatitis, endocrine gland infections; Neurological: MS, myasthenia gravis, B12; Autoimmune disorders: polymyostitis & polymyalgia rheumatica, rheumatoid arthritis; Endocrine: Addison's hypo & hyper thyroidism, Cushing's Syndrome; cancers; anemias: iron deficieny, B12 [megaloblastic]; diabetes mellitus; poisons.

    Exclusions [CCC]: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse. Exclusion of other diagnoses, which cannot be reasonably excluded by the patient's history and physical examination, is achieved by laboratory testing and imaging. If a potential confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.

    In her “New Clinical Definitions for ME/CFS” presentation, Dr. Bateman comments on the IOM Committee's decision not to list exclusions for SEID:

    There are no exclusionary criteria in this case definition. A differential diagnosis, appropriate work-up of symptoms, and treatment including referral to specialists is expected of health care providers. There is no way to list in case definition everything that can look like this. And as soon as you try to do it, guess what, you miss things. That's the rest of medicine that can present with abnormal symptoms, with fatigue, or cognitive function, or exercise intolerance, or pain syndromes or reasons for not sleeping. So doctors will be expected, like every other disease, when patients present with a symptom to assess them, and they will continue to assess them, and if the symptoms fall into place in this way, if early on it looks like this diagnosis, this can be a working diagnosis…. All other identifiable illness should be diagnosed and treated, and risk factors should be corrected within the 6 months; thus there's no need for this exhaustive list of exclusion criteria.

  • Nielk April 3, 2015, 12:33 pm

    So why do they distinguish the IOM criteria by stating that this is not an exclusionary criteria. It is a diagnosis to be made?
    The only difference being that they don't list the specific exclusions?

  • Ember April 3, 2015, 7:02 pm
    Nielk

    So why do they distinguish the IOM criteria by stating that this is not an exclusionary criteria. It is a diagnosis to be made? The only difference being that they don't list the specific exclusions?

    The Report Guide for Clinicians does provide guidance with respect to EBV mononucleosis, MS, colon cancer and primary sleep disorder. It also mentions fibromyalgia and irritable bowl syndrome as comorbidities:

    • Patients who do not meet the criteria for ME/CFS (SEID) should continue to be diagnosed by other criteria as their symptoms and evaluations dictate. These patients should also receive appropriate care. (Conditions that may approach but not meet the criteria for ME/CFS [SEID] include, for example, protracted recovery from EBV mononucleosis or gradual emergence of a different chronic illness, such as multiple sclerosis, colon cancer, or a primary sleep disorder.)
    • Comorbidities such as fibromyalgia and irritable bowel syndrome are common in ME/CFS (SEID) patients. These comorbidities should be diagnosed and treated when caring for patients. The presence of other illnesses should not preclude patients from receiving a diagnosis of ME/CFS (SEID) except in the unlikely event that all symptoms can be accounted for by these other illnesses.

    The CCC advises concerning exclusions, “It is essential to exclude certain diseases, which would be tragic to miss….” I've asked about the potentially tragic risk involved in failing to provide a more exhaustive list of exclusions:

    Exclusions assist practitioners in coming to a correct diagnosis. Considering that the IOM criteria are designed to increase diagnosis, would a list of exclusions (more exhaustive than EBV mononucleosis, MS, colon cancer and primary sleep disorder) not mitigate against the potentially tragic risk of practitioners' missing alternate diagnoses?

    Part 2 will cover the clinicians' guide.

  • Marky90 April 6, 2015, 9:01 pm

    Sound answers. Fully agree.

  • lazzlazz April 22, 2015, 8:09 am

    Thank you for this, and thanks to Dr. Bateman for serving on the committee and taking time to provide these responses. This is very important work, and the review was very well done.

  • lazzlazz April 22, 2015, 10:58 pm

    Link to video of Dr. Lucinda Bateman here: http://forums.phoenixrising.me/index.php?threads/dr-lucinda-bateman-new-webinar-iom-diagnostic-criteria.36945/#post-587994
    From Solve ME/CFS Initiative. Webinar with Dr Lucinda Bateman.
    Titled: Will SEID Diagnostic Criteria Improve Diagnosis and Treatment?