Jerrold Spinhirne – 9/28/2021 12:44:22 pm
Thank you for your clarification and explanation of the problems that will be caused by these proposed US ICD changes.
The strategy of the group of chronic fatigue-related organizations promoting these changes seems to be that socially promoting “CFS” and “ME/CFS” to the neurological section of the US ICD, without scientific justification, will somehow increase the credibility and legitimacy of these poorly defined mixed fatigue conditions.
However, the result most likely will be that ALL diseases and conditions under their new G93.3 heading, “Postviral and related fatigue syndromes,” will lose credibility with doctors and researchers by association—and because of the obvious manipulation of the US ICD for political purposes.
The entire G93.3 group will become wastebasket diagnoses—subject to medical skepticism and psychiatric interpretation—for everyone. Both under the new code G93.32, ME will become the ostensible equivalent of the “ME/CFS” that was called “SEID” and much more broadly defined than ME in the 2015 IOM/NAM report. Surely, such harm and confusion cannot be what this consortium is intending?
Reply – MEI – 10/14/2021 04:10:00 pm
Thank you for your comment and observations, Jerrold.

Wendy – 9/28/2021 07:25:24 pm
Myalgic encephalomyelitis or ME translates to “inflammation of the brain and spinal cord with muscle pain” and first appeared as “benign myalgic encephalomyelitis” in a Lancet editorial by Sir Donald Acheson in 1956. In a 1959 review he referred to several older reports that appeared to describe a similar syndrome. The neurologist Lord Brain included ME in the 1962 sixth edition of his textbook of neurology. A 1978 British Medical Journal article stated the Royal Society of Medicine conference to discuss the illness during that year clearly agreed Myalgic Encephalomyelitis was a distinct name for the disease. The article also stated the previous word (benign) used with ME was rejected as unsatisfactory and misleading because the condition may be devastating to the patient.
In 1988 both the UK Department of Health and Social Services and the British Medical Association officially recognized it as a legitimate and potentially distressing disorder.
Autopsies show evidence of enterovirus infection in the pontomedullary junction and midbrain (both are in the brainstem), medial temporal lobe, lateral frontal cortex, occipital lobe and cerebellum. This disease has nothing to do with any of the fatigue related illnesses.
Reply – MEI – 10/14/2021 04:11:05 pm
Thank you for your comment, Wendy.

Guido den Broeder – 10/2/2021 07:52:21 am
On behalf of GAME, I attended the CDC conference and spoke out against this proposal. The CDC asked me to send them a comment in writing a well.
Reply – MEI – 10/14/2021 04:14:19 pm
Thank you for your comment, Guido. Feel free to post the CDC’s response to your inquiry.

Allison Haynes May – 10/13/2021 01:32:43 pm
I agree completely with the problems presented in this blog, and thank you for the best presentation and explanation I have seen of this proposal and its potential damage to patients.
I also agree with the comments by Jerrold and Wendy.
We patients have been fighting for decades for clarity for M.E. as a distinct Dx and it is tragic (and very draining to our own precarious health) that we must repeatedly also fight against the actions and motives of both government agencies and advocacy organizations that are supposed to prioritize medical science and patients’ best interests, but instead seem to prioritize the growth of their own membership numbers, social media ‘popularity’, and status.
These questionable motives are evidenced (as they have been repeatedly over the decades) by their approval of an ever-increasing category of patients labelled with ME/CFS (or whatever the current funding trend is) when these patients actually suffer from diverse diagnoses. We see the problem over & over in online support groups : patients who’ve been suffering for years without care, discover they’ve had another illness or condition all along, and it has gone untreated and allowed to get worse.
This proposal goes against scientific and medical taxonomy and against the principal of differential diagnosis, and will cause further misdiagnosis of very ill patients.
The current WHO coding & classification created in the 1950s as explained by Wendy above is excellent, and is supported by the ICC, and the Nightingale Research Foundation definition. These prioritize the correct Dx of the patient via testing and complete patient history, and via the ruling out of other illnesses/conditions with similar symptoms.
It is unacceptable to create a Dx code based on a group of symptoms when a distinct code already exists with appropriate exclusions. It is also unacceptable when such a major change is proposed without appropriate consultation with patients.
The priority of govt’s and patient groups should be a precise Dx for each patient. This coding proposal is the opposite of precision and in turn leads to the opposite of care. Pwme do not deserve more suffering and neither do all the others who will be incorrectly herded into the proposed Dx code.
Reply – MEI – 10/14/2021 04:13:28 pm
Thank you for your comment and observations, Allison.

Suzy Chapman – 11/6/2021 02:59:05 pm
Thank you for submitting feedback on these proposals. I have also submitted comment, today.
In September, 7 US orgs and the NCHS presented two sets of proposals for radical changes to the ICD-10-CM G93.3 and R53.82 codes.
7 reasons why I can’t support either proposal:

A PDF of Feedback on proposals for Postviral and Related Fatigue Syndromes,
Suzy Chapman, Dx Revision Watch, November 2021
can be downloaded here:

Colleen Steckel – 11/12/2021 12:36:41 pm
The following is my personal response sent to NCHS regarding this issue.

November 12, 2021

Attn: National Center for Health Statistics

RE: Proposal to make changes to the G93.3 code section proposed at the Sept 15, 2021 meeting.

I am writing to you as a patient who has been dealing with myalgic encephalomyelitis since 1989. Originally diagnosed using the Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) label.
I support removal of Benign from the G93.3 code label. I would like to see that implemented as quickly as possible.

I object to changing the ICD code for Myalgic Encephalomyelitis. It has been put forth that doctors will not use the G93.3 code. I disagree with that assessment based on my personal experience. I have had the G93.3 diagnosis with the Myalgic Encephalomyelitis label for several years. By educating my doctors using the ME International Consensus Primer by Dr. Carruthers et al written in 2012, I have had much better care and have been able to get a SPECT brain scan covered by my insurance under that diagnosis code.

I am also aware of other patients who have similar cluster of symptoms that comply with the International Consensus Criteria being diagnosed with the G93.3 code from their doctors.
A subset diagnosis code should reflect a distinct patient group. The following study looked at a patient group selected under the ME/CFS-CCC and shows that ME-ICC patients can be selected out of that group. NOTE: The ME/CFS-IOM/NAM criteria is a broader definition encompassing more patient groups than the ME/CFS-CCC.

Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with ME/CFS https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8307418/
Baklund, Dammen, Moum, Kristiansen, Duarte, Castro-Marrero, Helland & Strand
(Norway, Spain)

“Case criteria applied: The CCC were used as inclusion criteria when the patients initially were diagnosed by the clinicians. In the current study DSQ was applied for diagnostic classification based on different diagnostic criteria and this revealed that all the 149 patients fulfilled the Fukuda case definition, and 93.3% (n = 139) fulfilled the CCC, and 63.1% (n = 94) patients fulfilled the ICC criteria….”
In my opinion, giving all of these patient groups the exact same diagnosis code goes against the purpose of diagnosis codes.

It is vital that patients who have ME are fully recognized as a distinct patient group in order for doctors to understand the specific needs that are different from those who do not fit this International Consensus Criteria or the original ME description offered by Dr. Ramsay or ME as described by Dr. Hyde. It is also vital that researchers who able to select this distinct patient group. We are pleased that many researchers are now recognizing the importance of this approach as can be seen on the list of research shown on the “Published ME-ICC studies” website page under “Medical/Research” at www.ME-International.org. This research recognizes the ME International Consensus Criteria in patient selection.

The path to rectify the issue of ME/CFS not having a code is for anyone diagnosed with CFS or ME/CFS (CCC or IOM/NAM criteria) to be screened using the ME IC Primer. This primer written by experts in 2012 offers guidance to make a diagnosis based on thorough screening. If they fit the criteria for ME, it would be accurate for them to be given the G93.3 code. The #MEICPrimer can be found in multiple languages on the “Primer/Info Sheets” page at www.ME-international.org.

In order to build accurate information about the disease myalgic encephalomyelitis it is vital that it maintain the G93.3 code which has been in effect for many years.

The argument that it is difficult to track patients who have been given the umbrella term ME/CFS, in my opinion, is inaccurate. Should someone want to research those who fall under this umbrella label they can use the two codes that comprise those patient groups in their search parameters.

If the problem arises that there are people given either the G93.3 code or the R53.82 who don’t belong in research, that is a medical education problem and should not be rectified in the ICD-10-CM coding mechanism.

The CDC is tasked with understanding what diseases are affecting the US population and tracking those diseases in order to allow for the best research possible. The best way to track patients in the ME, ME/CFS & CFS patient groups is to put forth accurate information about the importance of screening patients using diagnostic criteria that separates the different patient groups. At this time the ME patient group is defined by the International Consensus Criteria (2011) and CFS is defined by the Fukuda definition (1994).

The ME/CFS label is attached to two criteria. The first is the Canadian Consensus Criteria (2003) and the second is the IOM/NAM report (2015). It is also used to refer to ME & CFS. This confusion about what ME/CFS means was not addressed during the Sept 15 2021 meeting.

Before moving forward with any changes to the ICD-10-CM, the concerns I have raised here and the concerns I have seen raised by others about lumping multiple patient groups into one code should be addressed. Any proposal that is expected to be welcomed by the ME community needs to take into consideration the patients and advocates who recognize ME as a distinct disease and recommend myalgic encephalomyelitis have its own diagnosis code separate from CFS and ME/CFS.

Colleen Steckel
Personal submission
myalgic encephalomyelitis patient since 1989
Founder North Carolina/Ohio ME & FM Support Group

Wendy – 11/13/2021 12:21:30 pm

Submitted by email

ME is a multi system disorder including the Central Nervous System, Cardiovascular, endocrine, Encephalomyelitis can be diagnosed using Neuroimaging SPECT Scans, which have frequently observed additional brain area recruitment during cognitive tasks and abnormalities in the brain stem. The frequent observation of additional brain area recruitment and consistent observation of sluggish fMRI signal response suggest abnormal neurovascular coupling in ME.

In various studies, persons fulfilling the CCC 2003 a revised definition of ME, and ME-ICC were found to have significantly greater disability due to bodily pain (as measured by the bodily pain subscale of the SF-36) than those fulfilling the Fukuda definition. Those fulfilling the ME-ICC 2011 reported significantly worse headaches, chest pain, eye pain, muscle pain, pain in multiple joints, and tender/sore lymph nodes than those fulfilling the Fukuda CFS -1994 definition. In considering which name would be most appropriate, the committee turned first to ME—“myalgic encephalomyelitis” or “encephalopathy.” Historically, however, the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS; thus, a diagnosis of CFS is not equivalent to a diagnosis of ME.
https://www.nap.edu/nap-cgi/skimchap.cgi?recid=19012&chap=37-70

We are constantly told that there is no known cause of Chronic Fatigue Syndrome. Changing classification of ME to G93.32 is ignoring the thousands of studies that clarify that ME as a distinct organic brain disorder as per Ramsay & Hyde & Carruther’s et el’ ICC 2011, ICPrimer 2012. Those who are conducting research using the anomaly of ME/CFS do so out of vested interests by highjacking patients with Myalgic Encephalomyelitis for their own misguided purpose. This is medical fraud as it deprives ME patients of an accurate diagnosis leading to pensions and medical treatment.

Dr BM Carruthers notes:
“If such clarity and adequacy are not achieved, several types of smudging may result. In other words, if the generalisations from the medical model are too generic, they have no chance of adequately meeting the patients’ experience of illness and much relevant data may be overlooked or misinterpreted. Thus, the move from a more specific clinical concept such as myalgic encephalomyelitis or fibromyalgia to a more generic concept such as chronic fatigue syndrome or chronic pain syndrome entails missing a lot of the information that makes the syndrome a name match, and an experience. The syndrome as an experience is a coherent entity whose parts run together as a process—as the word syndrome indicates etymologically—and whose causal interactions are sensed directly in the mode of causal efficacy. This entity arises against a background that is treated as a non‐entity for the purposes of the observation. Thus, the attempt to organise clinical activity around a non‐entity, such as in somatisation disorder and Munchausen syndrome, where diagnosis depends on the absence of an entity, may interfere with proper clinical activity by importing a misplaced forensic attitude towards a patient’s experience of illness, discounting or distorting its relevance. The move towards ignoring the distinctions between primary and secondary which designate sensed causal directions in a clinical entity, whether applied to depression, anxiety, infection or fibromyalgia, add to the confusion and impede the elucidation of a properly dynamic clinical entity. The widespread use of the holistic biopsychosocial model of disease without any distinction between a clinical entity and its background encourages the “drowning” of clinical entities by risk factors, which can proliferate endlessly in a nominalist fury without orientation as to their state of relevance or lack thereof with respect to a real entity.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860613/

Submission sent by:
Wendy Boutilier
Patient diagnosed with Myalgic Encephalomyelitis since 2009

Allison May – 11/14/2021 01:48:18 pm

CDC National Center for Health Statistics

Personal submission regarding the proposal for changes to G93.3 Post-Viral Fatigue Syndromes, discussed at the meeting of the ICD-10 Coordination and Maintenance Committee, Sept 14-15, 2021.

To whom it may concern,

I am an M.E. patient and advocate. I was stricken with sudden-onset M.E. in 1989 at age 30, and remain ill with severe M.E. 32 years later, still without any treatment. I was one of the fortunate patients to be diagnosed with M.E. per the WHO code G93.3 by a diligent Doctor who was not following the “CFS” notion invented, as you know, by Stephen Straus to discredit the physical disease M.E. occurring in outbreaks at that time. Yet I am no closer to being treated for this disease than the millions who’ve been diagnosed since then with CFIDS, CFS, CFS/ME, or ME/CFS and the various criteria attached thereto.

In the past 14 years I’ve been in contact online with patients and advocates around the world, and have seen the severe patient harm, and even deaths and suicides, that the term CFS and its various Dx criteria and iterations have caused. This term should not be used as equivalent to M.E. or combined with M.E. ; ideally it should be banned altogether. Patients labeled with any diagnosis containing the initials CFS risk misdiagnosis, inappropriate treatment, or no treatment at all. This is not a meaningless acronym : the words “fatigue” and “syndrome” have trivialized the severity of this disease for decades, to the medical profession, the media, and the public. They continue to do so now, despite the addition of the initials M.E..

The terms CFS and ME/CFS are still a huge contributor to patient abuse in the U.S., Canada, Australia, and several European and Asian countries with which I and other advocates are in contact. Some still use only CFS, having followed the U.S. lead in the past. Where “ME/CFS” is used, it is usually seen as equivalent to CFS, which leads to psychiatric and/or “fatigue:” interpretations, thereby neglecting or harming patients. The CDC must certainly be aware of its influence on health policies of other countries : that influence can either be beneficial or harmful. I am opposed to the creation of a U.S. Dx code for “ME/CFS” (the term itself and the fact it is attached to the IOM/NAM criteria) because it would be a step backward in patient Dx, and would also set back M.E. Dx, research, and treatment by decades, in the U.S. and around the world.

Certain “ME/CFS” groups support using the conflated term in order to not “leave anyone [with a CFS diagnosis] behind”. Those of us who support separating the terms have the same goal, but through different means. To paraphrase both the 2011 ICC and the Nightingale M.E. definition , anyone with a CFS diagnosis must be further screened and investigated, to determine if they indeed have M.E. or have another illness/condition with a similar group of symptoms. To enshrine the conflated term by assigning it a Dx code will leave those patients currently diagnosed as CFS without a thorough investigation, and very possibly with a misdiagnosis or an undiagnosed condition that is treatable.

The 7 groups making the Dx coding proposal claim that “ME/CFS” patients are not being “tracked”, and that the solution to this is to create a Dx code for “ME/CFS”. I strongly disagree. All that the tracking of people diagnosed with “ME/CFS” will accomplish is adding up the number of people who have been put into the category “ME/CFS”.

This will not accomplish any improvement to individual patients’ Dx, let alone treatment. The category “ME/CFS” is seen by Physicians and patients as just that, a category. It is open to interpretation, due to its checklist of symptoms common to many ailments, and due to the absence of appropriate diagnostic tests to rule out other conditions/illnesses with symptoms similar to M.E. per WHO G93.3. We patients have watched as “ME/CFS” has led to both misdiagnosis of patients and to heterogenous research cohorts producing study results that are of little or no use to patients with M.E. or to any other specific patient group.

The CDC and the 7 groups appear to have chosen to ignore the existence of a much more precise criteria than the IOM/NAM : the ICC, specifically written to help physicians give patients a proper Dx, with testing to rule out diseases/conditions with similar symptoms to M.E.. The CDC and the 7 groups also seem to have chosen a selective view of the history of M.E. and the precise descriptions of the disease M.E. provided over decades by Drs. Ramsay, Dowsett, Richardson, Hyde, et al. I refer the Committee to the June 2021 study by the esteemed Dr. Maureen Hanson, which contains 172 references to the evidence of an enteroviral cause for M.E. : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8253308/

This evidence has been demonstrated and published over and over for decades. Yet the CDC definitions, while finally admitting M.E. Is not psychiatric, have continued to provide checklists of symptoms common to many illnesses, continued to use vague vocabulary such as “fatigue”, “malaise”, “brain fog” (instead of precise medical terminology), and continued to not recommend enough diagnostic testing.

Does the CDC and its Coding Committee really wish to be on the wrong side of history, as has happened in the case of other conditions throughout history, for example peptic ulcers ? As you hopefully are well aware, peptic ulcers were defined by the medical establishment as caused by stress, and a whole industry was built around “managing stress” and selling stomach-settling treatments, while Doctors who had shown them to be caused by a specific bacteria, H Pylori, were ignored by the establishment for decades, eventually winning the Nobel Prize for this discovery. One cannot help but wonder whether the CDC and the 7 groups are truly on the side of patients, when they repeatedly ignore an excellent candidate for the cause of the specific disease M.E., instead preferring to enshrine, with a Dx code, the large non-specific grouping (one cannot call it a Dx) that is ME/CFS per the IOM/NAM criteria. Keeping this vague criteria may increase “patient numbers” for the benefit of certain industries and organizations, but it is negligent and detrimental to individual patients who must live every day with a disabling illness, which under “ME/CFS” could be M.E. per WHO or per Ramsay/Hyde, or could be any number of other undiagnosed illnesses or conditions.

I strongly support the statements of opposition to the proposal provided by coding expert Suzy Chapman (DxRevisionWatch) and by the following international patient organizations :
M.E.-International
M.E.Advocacy [dot org]
Nightingale Research Foundation
GA4ME (Global Advocates 4 M.E.)

I would also bring to your attention the following patient groups which also oppose the proposal and have given their permission to be mentioned publicly :
The 25% Severe M.E. Group (International)
National ME/FM Action Network (Canada)
OpposingMEGA (UK)
The M.E. Alliance (UK)
M.E. Vereneging (Netherlands)
MEAI (M.E. Advocates Ireland)
Hope4M.E. (N. Ireland)

Several other organizations and patients who strongly support the ICC or Ramsay/Hyde over the IOM/NAM criteria have either submitted their opposition to the Committee, or have not been able to because of the very short notice given by the 7 groups. This short notice and the prior communication with the Committee (as noted in Suzy Chapman’s submission) reflect badly on the 7 groups, demonstrating a lack of desire to receive patient input and an insensitivity to the plight of patients, for most of whom 8 weeks is insufficient time to consider the proposal, discuss with each other, and compose and submit comments. Despite the short notice, the Committee must acknowledge that Suzy Chapman and 11 patient groups have managed to register their strong opposition to this proposal. This is already more patient groups than the 7 which made the proposal and were seemingly the only 7 groups privy to it.

My specific concerns re detriments to patients are well-explained in the submissions by ME-International and the other patient groups and individuals who oppose this proposal. My concerns re coding conventions are well-outlined in Suzy Chapman’s submission. I agree with these submissions in supporting the proposal that the term “Benign” should be removed from the ICD, and in strongly objecting to the combined term ME/CFS being assigned its own code. Coding should evolve to help Physicians and patients with Differential Diagnosis ; it should not go in the direction of grouping patients together by symptoms, particularly when Dx codes already exist for illnesses/conditions that may be grouped therein. It is unacceptable to creat a Dx code that combines M.E., a disease involving inflammation of the brain, with the many and varied conditions that currently fit within the parameters of “ME/CFS” but which may not have brain inflammation, and which may have existing Dx codes and should therefore be diagnostic exclusions.

In conclusion, I ask that the committee consider the serious repercussions of this misguided and inappropriate proposal, not only for U.S. patients but for other patients around the world, and that the Committee deny the proposal (with the exception of the removal of the term “Benign” from M.E.). The UK NICE recommendations were a step forward in progress, however small, which will hopefully help stop the abuse and neglect of patients. Implementing this U.S. proposal will be the opposite of progress, and will risk perpetuating the misdiagnosis of millions. Dx coding should constitute specificity and narrowing-down of diagnoses ; it should not endorse increasingly wide illness categories such as “ME/CFS”, defined by a short list of symptoms common to many illnesses.

Thank-you for considering my concerns on behalf of myself and countless other patients.

Allison May
M.E. Patient since 1989.
No affiliation to any organization. No Conflicts of Interest, financial or otherwise.