ME, CFS, ME/CFS or not? Argument by Tom Hennessy

by Cinda Crawford on January 2, 2012

in Chronic Fatigue Syndrome,ME Myalgic Encephalomyelitis

The debate rages as to whether ME is the same as CFS and vice-versa and, especially, should they be more correctly termed ME/CFS? How are we mere mortals to know?

Tom Hennessey recently digressed at length to Co-cure forum. Read his expose’ and see if you can come up with a valid opinion, then tell us “why?”. We all would like the final word on this, once and for all. The question is, “Will we get it?” and when.

Thanks Tom Hennessy.
Cinda Crawford, host of the Health Matters Show

PS- the deadline is passed for voicing your opinion to Donna Pickett at NCHS, but it’s never too late to learn about this vital topic that affects us all.

Hey Boys and Girls, Ladies and Germs,

FWIW (for what it’s worth), here goes the Ego part. For better or worse, I am one of the smartest people I have ever met. so, all of you who hate me because I am a smart ass, can sign off or hit the delete button now. Also, I have sent my old Videos from CNN’s Larry king Live (twice) and the MacNeil/Lehrer News Hour, and numerous other cable TV shows and CBS’s 48 Hours, and NBC’s Dateline, and ABC’s 20/20, and forty or fifty hours more of TV shows on VHS, has now been transferred to Digital media and sent to at least 50 people in more than 20 countries who are ready to go the Internet, in case I accidentally get Hit by train, or have my brakes fail, or some other seeming “accident” in the next few months, I will predict here and now, that it won’t be an accident.

OK, Now for the meat in this sandwich. Personality wise, she is tough to deal with, but i think Jill McLaughlin is MUCH closer to the facts than the so-called “ME/CFS” coalition. I have told her repeatedly, that i agree with her almost completely on the facts, but that she rubs soooo MANY people the wrong way (including my late father), that her message gets lost in the delivery.

After reading more than 30,000 emails, letters, faxes, FB messages and personal meetings with people from all over the world, IMNAHO (In my NOT always Humble opinion) These are NOT one disease, nor do they have ONE trigger.

I believe that these are cases of Multiple CHRONIC IMMUNOLOGICAL AND NEUROLOGICAL DISEASES aka CIND. that is where the name RESCIND, INC. comes from, some 20 years ago.

The Coalition 4 ME/CFS submitted a proposal to NCHS to reclassify Chronic Fatigue Syndrome (CFS) as neurological and code it to Myalgic Encephalomyelitis (ME) at G93.3. [Coalition 4 ME/CFS ICD-10-CM & ICD-9 revisions for Chronic Fatigue Syndrome (CFS)

http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf]

The premise that the Coalition 4 ME/CFS has used is that ME is the same as CFS and thus the ME=CFS=ME/CFS model. They are not the same. The definitions are different. ME is not a fatigue syndrome. Some symptoms may overlap, as with many illness (and considering that CFS is so broad), but they are different in nature and outcome.

The Coalition states that “there are over 4000 scientific papers on ME/CFS” [page 2, http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf]).

This is not true, with regard to ME/CFS (as the Canadian Criteria) or just the generalized use (or misuse) of the term. A medline search for ME/CFS listed 46, not 4000. Is this yet another haphazard, general unofficial substitution of the term ME/CFS?

The rationale upon which they base their request to change the ICD codes for CFS can be broken down as follows:

1. The Coalition 4 ME/CFS states that the purpose for the changes to the ICD codes is to bring the codes in line with the definition [http://coalition4mecfs.org/ICDPR.html]. This proposal does not accomplish this intention. NCHS has coded them properly. The current US ICD codes are already in line with the definitions. NCHS has coded ME and CFS accurately in the ICD-9 CM and the intent for the ICD-10-CM. CFS does not strictly define a neurological illness. Codes should accurately reflect and match the definition and classification. CFS is by definition a symptom syndrome and coding is accurate at R53.82 (under general signs symptoms).

The Coalition 4 ME/CFS states: “… the goal is to ensure alignment with the best case definition for CFS, which includes both viral and bacterial triggers.” [http://coalition4mecfs.org/ICDPR.html]

No CFS definitions include viral and bacterial triggers. The Coalition 4 ME/CFS does not designate what the “best case definition” is as there are several, which may be different. NCHS is part of the CDC. This NCHS Committee is to properly code existing illnesses. It should adhere to US/HHS policies. This would require staying within the confines of the current recognized and accepted HHS/CDC definitions. Codes do not define illnesses nor change case definitions.

If the Coalition wanted to specify a “best case definition,” they should have done so and THEN push for its acceptance and THEN code it accordingly. If this is what they were getting at, they skipped a critical step in the process.

2. The Coalition 4 ME/CFS states that the purpose of the proposal to NCHS is to code CFS as neurological. “The Coalition 4 ME/CFS on July 15, 2011, submitted a proposal to the National Center for Health Statistics (NCHS) for reclassification of chronic fatigue syndrome (CFS) as a neurological disease in the United States International Classification of Diseases-10-CM (ICD-10-CM) and International Classification of Diseases-9-CM (ICD-9-CM).” http://coalition4mecfs.org/ICDPR.html

None of the CFS definitions define what would be recognized as identifying a neurological disease. A recent survey of members of a Neurological Association demonstrated that84% do not view CFS as a neurological illness. (“Chronic Fatigue Syndrome: Labels meanings and consequences,” Journal of Psychosomatic Research, 9 April, 2011) The abstract notes that *”this is at odds with the WHO classification.” They do not view it as neurological because the definition does not support it as neurological DESPITE the WHO classification. Codes will not override the definition.

3. WHO ICD 10 and other countries have adopted the coding of CFS to ME at G93.3. There are many CFS definitions and other countries can make their own decisions and code them accordingly. Likewise the US should base it on the convention of our own policies, not based on other countries. The purpose of the Clinical Modification is to allow for such convention and changes or modifications can be determined according to each countries standards and policies.

NCHS has given the following explanation: “While it appears most appropriate to classify chronic fatigue syndrome in ICD-10-CM in the same way that it is classified in ICD-10, this placement is not without problems. The primary concern with the current WHO
placement in ICD-10 has been that the abnormalities of the brain in chronic fatigue syndrome patients most often cited in the literature are not found in all chronic fatigue syndrome patients. While chronic fatigue syndrome may be a heterogeneous group of disorders, some but not all are neurological in nature. Likewise, not all patients have experienced a viral infection prior to being diagnosed with chronic fatigue syndrome, nor are immune system anomalies universally found. Also of potential concern is the similarity between the type of neurological findings in chronic fatigue syndrome and in depression, which is a psychiatric disorder.” [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, [http://www.co-cure.org/ICD_code.pdf]

This statement by NCHS is accurate and this is why the US should not make the changes requested by the Coalition 4 NCHD as it is not in line with with the definitions used by the US federal health agencies.

The Coalition 4 ME/CFS claims that adopting the WHO convention of coding CFS to ME together at G93.3 would improve the diagnosis and patient care (see # 2). Actually in countries that have made these changes there has been no improvement in research, diagnosis, recognition or the general CFS worldview.

4. The Coalition 4 ME/CFS claims that research findings support their request. [http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pf page 5]

A section in the proposal is entitled neurological pathology. It states “Pain, debilitating fatigue and *especially post exertional malaise are hallmarks of CFS.” This is not true. Post exertional malaise is not a hallmark of CFS. In CFS (Fukuda), the definition most widely recognized and used in the US, post exertional malaise is minor and optional. If something is optional it is not a hallmark. Symptoms that are listed in the CFS definitions, some may be neurological but not necessarily (see # 2). In total it would not reflect a neurological illness.

Cited research shows findings in some patients (see NCHS statement, #3). Again, researchers may use different terms and definitions so findings may not be generalizable and will not be specifically identifiable in CFS. And some ME findings would be excluded from some CFS definitions. Research findings then may not be applied or will not be recognized or included within the CFS definition or treatment guidelines. If an illness excludes that which you have, then you do not have that illness.

These citations used by the Coalition 4 ME/CFS would be like citing the association of schizophrenia with infectious agents. Infectious agents have been found, but schizophrenia would not be reclassified as an infectious disease.

5. CFSAC has made recommendations to change the name to ME/CFS and code CFS to ME as neurological. “The CFSAC recommended that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, to be in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification)” (May 2011 meeting minutes) (See # 3.) We should not try to be in line with the Canadian ICD-10-CA. They have their own health system and conventions. They have a specific ME/CFS definition (Canadian Criteria CCC) that they use based on a Health Canada panel. Health Canada established the “Terms of Reference.” Any researcher may use these criteria but they are not recognized or referenced in the US or by US health agencies in any official capacity. There is no ICD code for ME/CFS so is not a recognized diagnostic entity.

Otherwise ME/CFS is another made up term with different meanings and should not be used in the US any official capacity.

CFSAC should recognized the importance of having the codes accurately reflect the definition congruent with the US federal health system. They should only recommend that which is in accordance with sound scientific and taxonomic principles, and not based on politics or PR or influenced by signs, slogans, posters or tee shirts.

6. The Coalition 4 ME/CFS mentions that NIH has used the term ME/CFS. Other agencies have not. HHS should not allow different agencies to change names or definitions or adopt or use different terminology or meanings, especially any that would run counter to that of other agencies within the department.

7. The Coalition 4 ME/CFS mentions that people use ME/CFS or use ME and CFS interchangeably. Using terms incorrectly and repeating a falsehood does not make it true. In fact, this group is most guilty of publishing and advertising all kinds of ME=CFS=ME/CFS (mis)information. One cannot cite ones own information or errors as an example or for justification. It is as if saying that they are the same makes it so. And repeat: CFS, also known as ME…. so this proves it.(?) Say-so medicine is not acceptable.

Anyone can call it or use whatever term they want (e.g. CFIDS), and researchers can research whatever they want, but federal health agencies should adhere to scientific principles which require specificity and consistency of accurately designating what they are studying and to which patient cohort it applies and what it is called, *and all must match, not used differently or to mean different things. It is this disconnect regarding definition/codes/terminology which has confounded research results and created the inconsistency and confusion, and resulting in the lack of acceptance, understanding or progress. Without agreed upon objective diagnostic criteria that is named specifically and used consistently there can be no compelling science or meaningful research results.

8. The Coalition maintains or agrees that ME is not diagnosed in the US or seen in medical records. This is not true. ME is diagnosed in the US. It is not well recognized, which is a problem, but this does not justify keeping it as a CFS (mis)diagnosis. It is of course not as common as a vague, broadly defined fatigue syndrome, but prevalence does not justify eliminating ME.

9. Myalgic Encephalomyelitis – International Consensus Criteria (ME-ICC) ["Myalgic Encephalomyelitis - International Consensus Criteria" Journal of Internal Medicine, Volume 20, Issue 4, p 327-338 [http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full]

The Coalition 4 ME/CFS claims that the ME-ICC supports their position. ME-ICC states: “The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).”

“The scope of this paper is limited to criteria of ME and their application. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other healthcare providers, improve the consistency of diagnoses in adult and paediatric patients internationally and facilitate clearer identification of patients for research studies.”

“Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.The International Consensus Criteria (Table 1) identify the unique and distinctive characteristic patterns of symptom clusters of ME”.

The ME-ICC conveys that ME has been erroneously called CFS and should not be. ME should be called ME, NOT CFS. It highlights the misuse of “fatigue” and the confusion it has caused. It specifically objects to and rejects having fatigue attached to the name so it would NOT support the use or creation of ME/CFS, which is the basis for all of the Coalition’s ME=CFS=ME/CFS positions.

This ME-ICC definition is clearly about the distinction between them. The ME-ICC is about the definition, scope and application of ME. The stated purpose of the ME-ICC was to “help clarify the unique signature of ME.” Not CFS. The Coalition 4 ME/CFS proposal to merge ME and CFS with the same ICD codes would be the opposite of what the ME-ICC is calling for.

10. The Coalition claims that coding ME and CFS together would offer protection from inclusion in the DSM. It is really the opposite. The WHO and the American Psychiatric Association (APA) are collaborating on the revision process for ICD-11 and DSM-V to ensure consistency and to achieve ‘harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria.’

The concern with the harmonization of the ICD and DSM is related to the overlap and mixing of these terms and definitions that allow the constant shifting. CFS definitions are so broad and vaguely worded that those with mental health issues can fit the definition, thus allowing psychiatrists to cherry pick the patients. But if they fit the definition, they “have” CFS. The mixing and connecting of ME to CFS is what would CAUSE the possibility of inclusion of ME in the DSM. What is being proposed by the Coalition 4 ME/CFS is to create a mixed cohort at G93.3, and these conditions could eventually be moved to the mental health category. If ME is recognized as a distinct neurological illness with testable pathology and not an unexplained fatigue syndrome, it would not belong in the DSM.

ESME recently released a statement. ESME recommend that: Researchers use the ICC exclusively and call the disease ME in all written documents about their research. Government agencies/foundations give research grants to scientists using the ICC. Government agencies/institutions officially adopt the ICC and post them on official websites. Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients. Advocates/patient associations speak with one voice by agreeing to call the disease ME.

ME should not be called CFS. CFS should not be called ME. Thus ME/CFS should be abandoned, which is what the Coalition 4 ME/CFS is using. This proposal by the Coalition 4 ME/CFS to NCHS is the antithesis of the ME-ICC and ESME statement.

To voice your objection to this proposal to code ME and CFS together, contact NCHS , Donna Pickett Deadline for comments is Nov.18. **This deadline has passed.**

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Neurology cfids | Bestmoneyonlin
01.17.12 at 2:29 pm

{ 4 comments… read them below or add one }

1

http://Tinyurl.com/ 04.15.13 at 4:48 pm

I really believe this specific article , “ME, CFS,
ME/CFS or not? Argument by Tom Hennessy | The Health Matters Show With Cinda Crawford”, quite
pleasurable plus the post was in fact a terrific read.
Thanks for your effort,Maira

2

Cinda Crawford 04.17.13 at 1:00 pm

Thanks Maira. That info had some really good points. Please check back in here again soon!
Cinda

3

lemonfoundation 12.05.13 at 9:40 pm

Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) is a syndrome, hence its name.

Acquired Immune Deficiency Syndrome (AIDS) is also a syndrome.

CFIDS & AIDS are not diseases. –>

A syndrome is a syndrome.

Allied government mindfully left the “ID” out of CF(ID)S to create the silly, belittling Orwellian name, “CFS.”

Myalgic Encephalomyelitis (ME) is a disease, just like malaria or MS ~ with specific hallmark diagnostic biomarkers.

CFIDS is AIDS-like (syndromes)
ME is MS-like (diseases)

“CFS/ME” is not interchangeable, or accurate.

ME patients do not have CFIDS. While many do, not all CFS patients qualify for a ME diagnosis (by International Consensus Criteria (ICC)).

Just like a CFSer cannot just wake-up and decide “hey, I have malaria.” A CFSer cannot just wake-up and arbitrarily decide that they have ME. I coined this phenomenon “disease envy.” In short, “disease envy” is stealing the name of a “disease” because you feel it sounds better than the name of your “syndrome”.

A CFSer stating that they have ME is the equivalent of an AIDS patient stating that they have MS —> it is wrong. Until the day comes when a doctor diagnoses you with ME, then you have CFS –> a syndrome.

Syndrome or disease, patients suffer and die of both.

E.g., AIDS (syndrome) patients die all the time.

People ignorantly talk about AIDS like its one thing, but by present-day definition, there are 29 separate and distinct DISEASES under the AIDS SYNDROME umbrella (everything from TB, malaria to lung and cervical cancers); Only every 29th AIDS patient is alike.

There have to be 29 types of CFS. {1 type being ME}
There is only one type of ME.

CF(ID)S & ME will never be the same, because diseases and syndromes are two different things.

CFIDS & AIDS (both syndromes) are 100% political paradigms.

ALLIED NATO GOV’T SOLD-OUT GLOBAL PUBLIC HEALTH FOR SAKE OF –> INDUSTRY, OIL, & ORWELLIAN GREED!

4

Cinda Crawford 02.25.14 at 7:00 pm

Among the sick and hurting, there should not be arguments of degree or definition about this. I see nothing positive to indulging in such an exercise. When you’re sick, you’re sick!

However among doctors, researchers and scientists alike, there is quite a need to get this right and classified properly. If we continue to have so very many incomplete and inaccurate answers, nothing good will come out of any of the exercises. Such a shame indeed.

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