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UPDATE: 05 Nov 2021
ME International volunteers have created and submitted comments on the diagnosis codes presented at the ICD Coordination and Maintenance Committee meeting. A special thank you to Connie Faast (member volunteer) for her help in writing the response. Our submitted position includes the following:
The following is ME International’s response to a request for input regarding the proposal to make changes to Postviral Fatigue Syndromes (G93.3) presented at the Sept 15, 2021 meeting of the ICD-10 Coordination and Maintenance Committee Meeting.
ME INTERNATIONAL SUPPORTS THE FOLLOWING CHANGE:
To understand this response, please see our full submission HERE.
If anyone would like to also submit comments, they should be sent to nchsicd10CM@cdc.gov BEFORE November 15th, 2021.
Original Blog ------------
IN A NUTSHELL
The problem presented is that there is no ICD code for ME/CFS. If you look below on the current proposed ICD codes, you will see that the US CDC are recommending adding ME/CFS and at the same time lumping ME/CFS, SEID, CFS and ME into the distinct code of G93.32 under G93 Other Disorders of brain.
ME, ME/CFS, CFS, and post viral fatigue syndrome would all be listed under G93.3. This will certainly make it much easier for CDC & NIH as this would remove the necessity of bringing clarity in the diagnosis of each condition.
IN BRIEF, HERE ARE THE PROBLEMS THIS PRESENTS:
Myalgic Encephalomyelitis has been recognized by the World Health Organization as a neurological disease since 1969, and has a distinct disease code of G93.3. It has nothing to do with psychiatry, fatigue, or long covid. The ME International Consensus Criteria (ICC) was developed and approved by the world’s most science based, educated doctors in 2011 for ME.
A defining symptom of ME patients includes PENE (post-exertional neuroimmune exhaustion). An ME-ICC diagnosis does not require a 6 month wait period. ME patients have various other health conditions such as cardiac issues, loss of thermostatic stability, neuroimmune dysfunction, subnormal body temperatures, and ME has also been associated with poliomyelitis.
CFS is an illness that came on the radar in the 1980’s in Lake Tahoe, CA (much more to that story). The CDC did not consider the illness in Lake Tahoe as ME, so they gave it the new name of CFS. The Fukuda Criteria was developed in 1994 to better define CFS. CFS symptoms are vague, have a 6 month wait period, and include PEM (post exertional malaise) which is not a required symptom. Currently CFS has its own code of R53.82, under chronic fatigue, unspecified.
Lack of education to medical technicians and doctors for both ME and CFS, has made it difficult to diagnose either patient group. ME and CFS are different illnesses with unique symptoms and each have different diagnoses and treatments. Unless the ICD codes are done correctly, many patients will be lost in the shuffle. That is why it is important that no one gets left behind and that there is clarity for all.
WHAT IS THE SOLUTION THAT WILL SATISFY MOST STAKEHOLDERS?
Most importantly, all ME and CFS patients need to be able to receive a diagnosis and treatment. This is currently a huge problem around the world!! A majority of people with both ME and CFS have not been diagnosed - this is millions of people! Diagnosis requires scientific evidence - which requires specific criteria.
The ME-ICC has specific criteria for ME, and the IOM (now the National Academy of Medicine) created a new diagnosis criteria based mainly on CFS research. What is needed is a clarification by the CDC that the R53.82 code applies to the CFS-Fukuda definition and that G93.3 applies to the ME-ICC diagnosis and if someone is diagnosed using the ME/CFS criteria then they need to be further screened to clarify which patient group applies and use the appropriate code. SEID should not be added to the mix as it just adds another layer of confusion.
ME, CFS, and Long Covid are all unique illnesses and require their own codes.
DETAILS ABOUT THE PROPOSAL
On Sept 15 Mary Dimmock on behalf of International Association for CFS/ME, #MEAction, Open Medicine Foundation, Solve M.E, Massachusetts ME/CFS & FM Association, Minnesota ME/CFS Alliance, and Pandora gave a presentation to the U.S. Centers for Disease Control’s ICD-10-CM Coordination and Maintenance Committee. This proposal was to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases.
While the original proposal was to add ME/CFS, there were more changes brought in by the Coordination and Maintenance Committee, which resulted in the following proposal.
Proposed changes would result in the following:
Thank you to Suzy Chapman, Dx Revision Watch for clarifying the changes to the ICD-10-CM coding on the Science for ME forum. Discussion on this topic can be found HERE.
CURRENT U.S. ICD CODING
See FY 2021 release of the ICD-10-CM HERE.
See HERE for the recording of the presentation.
Passcode: $E33^Cb@ Presentation begins at: 04:22:25 ends at 04:40:38.
See HERE for the proposal in the packet from the meeting. The proposal affecting ME starts on page 169.
ICD codes are used worldwide and put out by the World Health Organization (WHO). ICD stands for International Classification of Diseases. These codes are then either adopted as a whole by a country or the country takes those codes and adapts them to their specific situation.
The ICD codes are used to track healthcare statistics/disease burden, quality outcomes, mortality statistics, and billing. They are extremely important because they provide a common language for reporting and monitoring diseases. This allows the world to compare and share data in a consistent and standard way.
The US is one of the countries that adapts the codes put out by the WHO. One of those adaptations that applies to the ME community is that ME and CFS in the US have separate diagnosis codes.
Currently the diagnosis code for myalgic encephalomyelitis (ME) that U.S. doctors use is G93.3. There is a separate code of R53.82 when making a diagnosis for CFS. At this time the label ME/CFS does not have a diagnosis code so doctors are using either the G93.3 code or the R53.82 code depending on how they view the patient’s illness and depending on their level of understanding about ME and/or CFS.
Chronic fatigue syndrome, as defined by Fukuda in 1994, has a very vague description that does not require post exertion malaise or post-exertional neuroimmune exhaustion. Doctors diagnosing patients with CFS capture a wide variety of fatiguing illnesses not related to ME. This labeling of people with CFS who do not have ME has led to research that has no application to the ME patient group. The result has led to the promotion of graded exercise and/or psychological treatments to cure CFS.
ME International advocates for the distinct disease myalgic encephalomyelitis and recommends using the International Consensus Criteria (ME-ICC) and the International Consensus Primer (ME ICPrimer) to diagnose and treat ME.
On page ii of the International Consensus Primer the experts, who based the ME ICPrimer on their experience with over 50,000 patients, state the following:
Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.
2. Remove patients who satisfy the ICC from the broader category of CFS.
The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. 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. The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”
ADDING A G93.32 code for ME/CFS and combining that with ME and CFS
“The road to hell is paved with good intentions”
HOW WILL A MILLION ME PATIENTS IN THE U.S. INFORM THEIR DOCTORS IF THERE IS A NEW CODE?
It is true that ME/CFS does not have a diagnosis code. However, doctors can use the ME code if they are informed that is the proper course to take as is done on page 1 of the ME ICPrimer. An education campaign by all the organizations representing patients affected would make the need for changes to the ICD code unnecessary.
From page 1 of the IC Primer
The ME ICPrimer has been part of the education offered by ME International for ME patients to share with their doctor. Many of us who have used this informative document have the G93.3 code in our records already.
What happens if we can’t get our doctors to change the code in our records?
Those with the R53.82 code will be attached to the label as “Chronic fatigue, unspecified.” The label in the records would no longer be attached to chronic fatigue syndrome. Could this affect disability rulings based on chronic fatigue syndrome? In a few years will anyone understand that R53.82 was anything other than chronic fatigue unspecified?
Those with the G93.3 code will be attached to the label as “Postviral and related fatigue syndromes.” Imagine having a doctor who understands ME with the G93.3 code and then switching doctors or landing in an ER. They see the G93.3 code and equate that with postviral and related fatigue syndromes. Will a doctor viewing us with that label consider the special needs attached to ME?
WHAT DO DOCTORS UNDERSTAND ABOUT ME/CFS?
Those doctors who had knowledge of ME/CFS prior to 2015 will likely understand that label was attached to the Canadian Consensus Criteria (CCC) which is the precursor to the International Consensus Criteria (ICC). While this was an improvement over the vague Fukuda definition, the ME ICPrimer still recommends anyone with this diagnosis be re-screened to verify they have ME.
Those doctors who are newer to the field are being educated that ME/CFS is the label used in place of the systemic exertion intolerance disease (SEID) label. This is the information now posted on the CDC website. That criteria is based on the report by the Institute of Medicine (IOM) which is now known as National Academy of Medicine (NAM).
A comparison of the ME International Consensus Criteria (ME-ICC) and the IOM report (ME/CFS-IOM/NAM) show that there is a significant difference in the diagnosis of ME and ME/CFS.
The IOM report recommendations were the outcome of using only those aspects of the illness that were common between ME and CFS. A comparison chart showing the difference between the ME-ICC and the ME/CFS-IOM/NAM criteria can be found HERE.
Several distinct features of ME, which include the neurological changes, immune dysfunction and cardiac abnormalities, are not part of ME/CFS-IOM/NAM diagnosis.
As patients, we often see that a doctor’s understanding of a disease is based on the name and what symptoms are listed in the diagnostic criteria. The patient community has seen first hand how having the chronic fatigue syndrome label with vague symptoms led to a psychological/behavior modification approach to treatment.
In the 6 years since the IOM/NAM report was rolled out, doctors continue to follow the general advice given of treating patients with behavior modification, while very little medical intervention is offered other than recognition of the need for specialists to assess orthostatic intolerance.
MORE QUESTIONS TO CONSIDER
Will a change from ME and CFS having separate diagnosis codes getting changed to both ME and CFS having the same code bring clarity to diagnosis for ME?
Will a doctor who has been trained to see chronic fatigue syndrome as a disease treated using cognitive behavior therapy (CBT) and graded exercise therapy (GET) change their approach to diagnosis and treatment?
Might this change lead doctors, who only understand CFS as a psychological disease, to prescribe CBT and GET for all G93.32 patients no matter what label is given?
Will a doctor who has little or no training about CFS or ME approach patients using the CFS diagnosis or the ME/CFS diagnosis or an ME diagnosis?
Will a patient who currently has an ME diagnosis with the G93.3 code, be switched to the CFS or ME/CFS label in their medical records?
On the other end of the spectrum - where does it leave patients with a CFS diagnosis that fit the ICC criteria? Will they be re-evaluated for ME or will they be dumped in the ME/CFS-IOM bucket with limited testing/treatments?
Will this inclusive G93.32 code, that includes multiple patient groups, lead to continued lack of clarity in research?
Will researchers who are not familiar with this field believe it is reasonable to assume that anyone with a CFS, ME/CFS or ME diagnosis with the G93.32 code can all be lumped together and still achieve accurate results? Researchers base their research on alike patient groups.
WHAT COMES NEXT?
ME International advocates for patients to be diagnosed using the ME International Consensus Primer and thus receiving proper treatment for those aspects of the disease specific to ME. With that in mind, we will be reviewing these questions and will submit a response with our recommendations before the deadline on Nov 15, 2021.
"During the COVID-19 Pandemic, fax and regular mail is not currently being monitored and all communication should be sent via e-mail. Comments on the diagnosis proposals presented at the ICD Coordination and Maintenance Committee meeting should be sent to the following email address: nchsicd10CM@cdc.gov"
We invite input from our members. Those can be posted in the comments or emailed to admin@ME-International.org
We will update this blog with a link to our submission as soon as it is completed.
The following is a clip from the presentation packet to show exactly how G93.3 will be affected as presented at the meeting.
CHANGE TO ICD CODES FROM PRESENTATION PACKET
with Systemic exertion intolerance disease [SEID] added to the Index and also coded to the proposed new G93.32 sub-code.