Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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ME and cfs to be classified as seperate illnesses

Discussion in 'General ME/CFS News' started by Gerwyn, Apr 21, 2010.

  1. awol


    Mithriel some people are permanently disabled without cycles of remission. Others, like me, have remissions. Does this mean we are fully well during remission? No. But we don't conform to CCC at all times. This is important to research: There could be something about our immune systems and/or endocrine systems that works differently. It could be valuable to know this for treatment development, vaccine development etc.

    If you simply declare that those of us who experience remissions don't really have ME at all you are missing the point. I do have ME even if I have struggled to find a doctor to accurately test for and recognize this fact. I am now in remission and do not have enough symptoms to meet CCC criteria. Next time winter comes around my system will likely shut down again and then maybe we can call it ME again by your definition. But that points to the problem - if it comes back then clearly it never really went away did it? So how can you say I do not have ME if I have remissions?
  2. awol



    I agree 100% with all of your points. But what needs to be absolutely clear in any strict definition of ME is that the FULL HISTORY is essential. The CCC document does make this point, but so far I have never met a doctor who actually asked me anything about my history unless I brought it up. They have always just asked me about what was bothering me right then.
  3. Bob


    England (south coast)
    awol, i agree with you... but we are always going to struggle with our doctors... let's face it, 99% of doctors are totally useless when it comes to ME.
  4. Mithriel

    Mithriel Senior Member

    Awol, I have no idea where you think I said you don't have ME if you get remissions. A remission is simply that you can now do more with less symptoms. Many people have had such good remissions that they thought they were cured and took up strenuous sports only to crash terribly. That is why it is important to stress that ME is never completely gone it is just that the ceiling beyond which you get symptoms is higher than your day to day life. Over do your limit and the symptoms will flare up again.

    Ramsay described a typical ME patient as being able to live normally for a few months and then to have everything flare up again.

    It is exactly the same with MS. Some people have a single episode and then are fine for years. I was friendly with a woman who had a very bad attack in her twenties then nothing until she had a heart bypass in her sixties when she deteriorated rapidly. She always had MS.

    Getting worse with exercise is the cardinal symptom of ME like high blood sugar is in diabetes. It is indirect but is a sign of something going wrong within the body. Diet can control blood sugar in a diabetic but they are not normal and will show signs if challenged. I think that exercise testing will show the same thing in ME even if you are not showing symptoms because you are controlling your exercise -activities of living is maybe a better expression.

    I have bad joint pain but no one is going to change the definition of rheumatoid arthritis to leave out inflammation just to make my symptoms fit. Only you can decide if you have ME or not, but it is what it is. That is no judgement on you or your suffering just a fact.

  5. awol


    ok, thanks for clarifying. Peace.

  6. Mithriel

    Mithriel Senior Member

    We are all very badly served by the medical community.


  7. Jerry S

    Jerry S Senior Member

    This is the section of the Canadian Consensus Clinical Case Definition which deals with the variability of symptoms over time:

    General Considerations in Applying the Clinical Case Definition to the Individual Patient

    1. Assess Patients Total Illness: The diagnosis of ME/CFS is not arrived at by simply fitting a patient to a template but rather by observing and obtaining a complete description of their symptoms and interactions, as well as the total illness burden of the patient.

    2. Variability and Coherence of Symptoms: Patients are expected to exhibit symptoms from within the symptom group as indicated, however a given patient will suffer from a cluster of symptoms often unique to him/her. The widely distributed symptoms are connected as a coherent entity through the temporal and causal relationships revealed in the history. If this coherence of symptoms is absent, the diagnosis is in doubt.

    3. Severity of Symptoms: A symptom has significant severity if it substantially impacts (approximately a 50% reduction) on the patients life experience and activities. In assessing severity and impact, compare the patients activity level to their premorbid activity level. Establishing the severity score of symptoms is important in the diagnostic procedure (46,45), and should be repeated periodically. A chart for severity of symptoms and symptom hierarchy can be found in Appendix 3. While this numerical scale has been developed as a tool to assist the clinician and position the patient within the overall spectrum of ME/CFS severity, the severity and impact of symptoms should be confirmed by direct clinical dialogue between physician and patient over time.

    4. Symptom Severity Hierarchy: Periodic ranking of symptom severity should be part of the ongoing evaluation of the clinical course. (Appendix 3) This hierarchy of symptom severity will vary from patient to patient and for an individual patient over time. Thus, although fatigue and post exertional malaise are universal symptoms of ME/CFS, they may not be the most severe symptoms in the individual case, where headaches, neurocognitive difficulties, pain and sleep disturbances can dominate, at least temporarily. Establishing symptom severity and hierarchy helps orient the treatment program.

    5. Separate Secondary Symptoms and Aggravators: It is important to try to separate the primary features of the syndrome from those that are secondary to having a poorly understood chronic illness in our society such as secondary stress, anxiety and depression and inactivity. It is also important to consider symptom interaction and dynamics, and distinguish the effects of aggravators and triggers.
  8. awol


    yes, and in my mind this is the most beautiful part of the document. Now how to get doctors to read it....
  9. Jerry S

    Jerry S Senior Member

    Yes, indeed, awol! When I last showed my doctor the Canadian guidelines overview, he glanced at it and handed it back. Not interested - yet he claims to understand and treat CFS. He really makes no distinction between CFS and chronic fatigue - let alone Canadian ME/CFS.

    Best wishes,

    Jerry :Retro smile:
  10. Otis

    Otis Señor Mumbler

    Yesterday at the CFSAC meeting Nancy Klimas said that the new ICD code for CFS would put it in a psych category. In addition to the issues with a psych label she indicated a valid concern about this categorization limiting or eliminating our insurance here in the US. Is Nancy correct about CFS getting shoved into a psych category? I'm too PEMed to to research today so if anyone has more information please post it - thank you.

  11. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Noone gets left behind. If one suffers from the symptom of chronic fatigue there can be only one of two possibilities, one has
    (1) one of the many diseases and syndromes recognized by medicine (including psychiatry) that cause chronic fatigue (such as ME, MS, cancer, depression, etc.) or
    (2) Idiopathic Chronic Fatigue (CF not caused by a recognized illness). ICF isn't necessarily psychogenic although charlatans like the Wessely school promote this idea. As a lay person, I think that the vast majority of ICF cases have an undiscovered physical cause.


    I was just saying NICE doesn't define "CFS" by Fukuda, it uses Oxford and adds on PEM as an additional criterion that must be met. This is much better than the Oxford Criteria alone, but still ridiculously bad.

    NICE uses "Oxford 'CFS' + PEM". By this I meant both the Oxford criteria and PEM were incorporated into NICE's single definition of "CFS" not that there were two NICE definitions or that all people with PEM and all people with Oxford were added together.
  12. Dr. Yes

    Dr. Yes Shame on You

    Hey Otis,

    Can you find a link and time to the part of the CFSAC meeting where Klimas makes that statement? Offhand, based on what you said above, I would say that she is mistaken about the psych category thing.

    In its current form, the ICD-10CM (the one that will be used in the United States) will not put CFS in the psych category.

    It will, however, keep it in the vague section on "Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified". But this is not part of the "Mental and behavioral disorders" section.

    Insurance problems may become greater due to the label "NOS" being attached to the chronic fatigue syndrome, and even more likely due to the fact that CFS will be shut out from the neurological disease section and from any association with "postviral fatigue syndrome". Since ME will be included (finally), it would be nice if American doctors could start diagnosing people with ME, though what criteria will they use?... A Ramsay criteria that a patient points them to? Or some new, deliberately B.S. definition from the CDC?

    In the past the CFSAC has called for inclusion of CFS in the neurological disease section that will now contain ME and postviral fatigue syndrome (hey, maybe we could all become PVFSers...). I don't know if that was mentioned at this meeting.
  13. Gerwyn

    Gerwyn Guest

    ccc is the only clinical criterea the others are for research.
  14. Gerwyn

    Gerwyn Guest

    autism is dianosed according to certain criterea they vary in severity but all patients have the same symptoms to a greater or lesser degree.There is however considerable debate whether Aspergers is an entirely seperate disorder.In ME the pectrum of symptoms varies as well as the severity but all have neuroendocrine immune abnormalities
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch


    It is the case that the most recent proposals for the forthcoming US ICD-10-CM proposes classifying Chronic fatigue syndrome in Chapter 18 at R53.82.

    CHAPTER 18
    Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)
    This chapter includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill-defined conditions regarding which no diagnosis classifiable elsewhere is recorded.

    This is not the Mental and Behavioural chapter which is:

    Mental and behavioral disorders (F01-F99)
    Includes: disorders of psychological development
    Excludes2: symptoms, signs and abnormal clinical laboratory findings, not elsewhere classified (R00-R99)

    The PDF of the most recent proposals for ICD-10-CM Tabular List on the CDC site is a little hard to locate and is in a Zipped PDF file of approx 4MB when unZipped. I have a copy on file and if anyone would like a copy, email me and I'll send you one. I might also upload a copy to my site for ease of reference.

    This is from the Zipped PDF from the CDC site:

    Proposals for ICD-10-CM (scheduled for October 2013):



    Chapter 6

    G93 Other disorders of brain

    G93.0 Cerebral cysts
    Arachnoid cyst
    Porencephalic cyst, acquired
    Excludes1: acquired periventricular cysts of newborn (P91.1)
    congenital cerebral cysts (Q04.6)

    G93.1 Anoxic brain damage, not elsewhere classified
    Excludes1: cerebral anoxia due to anesthesia during labor and delivery (O74.3)
    cerebral anoxia due to anesthesia during the puerperium (O89.2)
    neonatal anoxia (P28.9)

    G93.2 Benign intracranial hypertension
    Excludes1: hypertensive encephalopathy (I67.4)

    G93.3 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis
    Excludes1: chronic fatigue syndrome NOS (R53.82)


    Chapter 18

    ICD-10-CM Tabular Page 1165 2010

    R53 Malaise and fatigue
    R53.0 Neoplastic (malignant) related fatigue
    Code first associated neoplasm
    R53.1 Weakness
    Asthenia NOS
    Excludes1: age-related weakness (R54)
    muscle weakness (M62.:cool:
    senile asthenia (R54)

    R53.2 Functional quadriplegia
    Complete immobility due to severe physical disability or frailty
    Excludes1: frailty NOS (R54)
    hysterical paralysis (F44.4)
    immobility syndrome (M62.3)
    neurologic quadriplegia (G82.5-)
    quadriplegia (G82.50)

    R53.8 Other malaise and fatigue
    Excludes1: combat exhaustion and fatigue (F43.0)
    congenital debility (P96.9)
    exhaustion and fatigue due to:
    depressive episode (F32.-)
    excessive exertion (T73.3)
    exposure (T73.2)
    heat (T67.-)
    pregnancy (O26.:cool:
    recurrent depressive episode (F33)
    senile debility (R54)

    R53.81 Other malaise
    Chronic debility
    Debility NOS
    General physical deterioration
    Malaise NOS
    Nervous debility
    Excludes1: age-related physical debility (R54)

    R53.82 Chronic fatigue, unspecified

    Chronic fatigue syndrome NOS
    Excludes1: postviral fatigue syndrome (G93.3)

    R53.83 Other fatigue
    Fatigue NOS
    Lack of energy


    Innocent Dr Yes (and I do like your wimple) wrote:

    Yes. The CDC document from 2001

    "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,

    included this text on the earlier proposal that CFS should be coded G93.3. Highlighted in blue, but the other content is worth a skim for those who haven't already seen it (full document here: ) and full text in an earlier Suzy posting here Post #151



    For morbidity data the United States uses the International Classification of Diseases, ninth revision, clinical modification (ICD-9-CM), a clinical modification of ICD-9. ICD-9-CM has been used in the United States since 1979 and has an annual update process that has been in place since 1985. The update process begins with the convening of the public forum, ICD-9-CM Coordination and Maintenance Committee. Proposals to modify the classification are presented and discussed during these public meetings. Information about future meetings of the ICD-9-CM Coordination and Maintenance Committee may be found on the NCHS website at

    In 1990, a recommendation to create a specific code for chronic fatigue syndrome was presented. At that time, there was no consensus about the etiology of the syndrome, which is needed to accurately classify a condition in the ICD. A new code could not be created because of this problem; however, a modification to the alphabetic index was made to direct users of the classification to code 780.7, Malaise and fatigue. This is the same code used to identify cases of postviral syndrome. This change became effective October 1, 1991.

    In 1998, subcategory 780.7 was expanded to include new five-digit codes. The new codes created included code 780.71, Chronic fatigue syndrome. The placement of this condition in this category was consistent with the WHO version of ICD-9 and with its placement within ICD-9-CM.


    WHO published ICD-10 in 1992 and included many modifications, among them relocation of some diagnoses to different chapters within the classification. WHO created a new category G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom chapter of ICD-9. WHO also moved benign myalgic encephalomyelitis to the new code G93.3.

    The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar.

    Changes made in ICD-10 are unique to that version of the classification and not retrospectively applied to previous revisions of the ICD. Therefore, any changes in ICD-10 such as the creation of new categories or relocation of conditions from one chapter to another are not retroactively added to ICD-9 or ICD-9-CM.


    In keeping with the placement in the ICD-10, chronic fatigue syndrome (and its synonymous terms) will remain at G93.3 in ICD-10-CM.

    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. Involvement of multiple systems has complicated the classification of chronic fatigue syndrome.

    It should be noted that issues related to reimbursement have not been a factor in deliberations regarding placement of chronic fatigue syndrome in ICD. Modifications to ICD-9-CM (the classification currently in use) and in ICD-10-CM, its intended replacement, are based on relevant clinical information and adherence to the structure and conventions of the ICD. The decision of third party payers regarding their coverage and reimbursement policies are independent of the decisions regarding modification of the classification.

    [Extract from 2001 document ends]

    @ Bob

    With regard to ICD-10 only

    Extracts from: [CO-CURE] ACT: Information on the launch of ICD-11 Alpha Draft, Suzy Chapman, 06 May 2010

    In ICD-10, "Chronic fatigue syndrome" is listed in Volume 3: The Alphabetical Index, only, where it is indexed to G93.3.

    To date, ICD Revision has been silent around the inclusion (or not) of "Chronic fatigue syndrome" in Volume 1: The Tabular List, in ICD-11.

    Nor has ICD Revision published any intention that it proposes to revise the existing Index code for "Chronic fatigue syndrome" for ICD-11 or that "Chronic fatigue syndrome" should be placed in a chapter other than Chapter VI (6), to which it is currently indexed, if it were the case that ICD Revision is considering the inclusion of "Chronic fatigue syndrome" in Volume 1: The Tabular List.


    [2] The Introduction to ICD-10 Volume 3: The Alphabetical Index lists several possible relationships between a term included in the Alphabetical Index and a term included in the Tabular List to which it is indexed:

    "The terms included in the category of the Tabular List are not exhaustive; they serve as examples of the content of the category or as indicators of its extent and limits. The Index, on the other hand, is intended to include most of the diagnostic terms currently in use. Nevertheless, reference should always be made back to the Tabular List and its notes, as well as the guidelines provided in Volume 2, to ensure that the code given by the Index fits with the information provided by a particular record.

    "Because of its exhaustive nature, the Index inevitably includes many imprecise and undesirable terms. Since these terms are still occasionally encountered on medical records, coders need an indication of their assignment in the classification, even if this is to a rubric for residual or ill-defined conditions. The presence of a term in this volume, therefore, should not be taken as implying approval of its usage."

    and, according to a February 2009 response from WHO HQ Classifications, Terminology and Standards Team, terms that are listed in the Index may be:

    a synonym to the label (title) of a category of ICD;
    a sub-entity to the disease in the title of a category;
    or a "best coding guess".

    In indexing "Chronic fatigue syndrome" to G93.3, ICD-10 does not specify how it views the term in relation to "Postviral fatigue syndrome" or in relation to "Benign myalgic encephalomyelitis". Nor does ICD-10 specify how it views the relationship between "Postviral fatigue syndrome" and "Benign myalgic encephalomyelitis".

    Although the 2001 CDC document above had stated:

    "The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar."

    in ten years, I have yet to see a document by the WHO, or a formal statement of clarification or a response to a request for clarification from a member of the public that specifies how ICD views the relationship between the three terms.

    In correspondence, WHO classification experts and secretariat skirt round this issue, and instead will confirm which volumes, chapters and codes the three terms are coded and indexed to, but have thus far avoided being nailed down on how they view the relationship between the three terms.

    My websites and reports make no assumptions about how ICD-10 views the relationship between the three terms nor any assumptions about what proposals might be made by any of the Topic Advisory Groups for the potential inclusion of "Chronic fatigue syndrome" in Volume 1, in ICD-1 . But since all three volumes of ICD-11 will be integrable, it's reasonable to anticipate that "Chronic fatigue syndrome" might be included in Volume 1, in this forthcoming edition and also that definitions might be included for all three terms, in accordance with the "Content Model".

    The ICD-11 Alpha Draft was scheduled for release between 10 - 17 May. No sign of a launch yet. A delay would not surprise me.

    All we have to go on so far is the demo iCAT for which the Content Model fields are incomplete and the author status of what content has been included, unspecified.

    If you want to see the section for the G93.3 codes in the iCAT demo (and the F codes in Chapter 5), there are instructions on my website, in this posting, for accessing the server which hosts the demo iCAT platform:

    ICD-11 Alpha Draft scheduled to launch between 10 and 17 May

    Shortlink Post #42:

    But bear in mind this is only the demo and until ICD Revision issues a draft and launches the iCAT, and unless the fields for the three terms have been completed, at this stage it may not be clear in the alpha, what ICD Revision Steering Group is proposing for CFS in ICD-11.
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    PDF of current US ICD-10-CM Tabular List

    For the PDF of the most recent ICD-10-CM proposals for the Tabular List see this page on my site:

    Go to bottom of Page 2

    CDC site: International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM)
    The 2010 update of ICD-10-CM replaces the July 2009 version.

    Open PDF from my site: CDC ICD-10-CM 2010

    Click on the link not the PDF graphic.

    It's about 4MB and on my slow broadband connection takes around a minute to open.

    If you'd prefer an email attachment, let me know and I'll forward.

    For Canadian ICD-10-CA go here:

    Version 2009 of ICD-10-CA/CCI replaces version 2006

    Version 2009 of ICD-10-CA/CCI replaces version 2006. ICD-10-CA has 320 new codes and 251 deactivated codes. CCI has 1555 new codes and 1697 deactivated codes. To assist with data retrieval from one version of the classification to the next, you may also wish to purchase our Evolution Tables. Evolution tables trace the heritage of a current code in the classification and are useful as a quick guide to understanding macro changes within the classification. Please contact the CIHI order desk at if you wish to upgrade.

    PDF of ICD-10-CA/CCI Version 2009 Now Available

    ICD-10-CA and CCI tabular list and alphabetical index are available in downloadable, printable PDF. To access one of these documents, please click on the link below.

    Version 2009 ICD-10-CA Tabular List, Volume 1 PDF (4.9MB)
    Version 2009 ICD-10-CA Alphabetical Index, Volume 2 PDF (4.3MB)
    Version 2009 CCI Tabular List, Volume 3 PDF (6.1MB)
    Version 2009 CCI Alphabetical Index, Volume 4 PDF (2.1MB)

    Please refer to Candadian site for full details and documents.
  17. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Canadian ICD-10-CA v for 2009

    Version 2009 ICD-10-CA Tabular List, Volume 1 PDF (4.9MB)

    Page 312

    Chapter 6

    G93.3 Postviral fatigue syndrome

    Includes: Benign myalgic encephalomyelitis

    Chronic fatigue syndrome

    Excludes: fatigue syndrome NOS (F48.0)
  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    iCAT demo for ICD-11 Alpha Draft

    iCAT – Initial ICD-11 Collaborative Authoring Tool

    click on this link:

    The demo and training iCAT platform:

    Click on the “ICD Content” Tab (second Tab on left)

    Open the + next to ICD Categories, if the drop down list is not already displaying

    Open the + next to 06 VI Diseases of the nervous system

    Open the + next to G90-G99 Other disorders of the nervous system

    Open the + next to G93 Other disorders of brain

    Click on G93.3 Postviral fatigue syndrome

    On the Right of your screen:

    Click on the “Definition Tab” if it is not already selected

    You should see the following:

    ICD Code G93.3

    ICD Title Postviral fatigue syndrome

    Definition Not yet unpopulated

    Inclusions: Benign myalgic encephalomyeltis

    Exclusions: Not yet populated

    (so no CFS accounted for yet within any chapter of ICD-11 in the iCAT demo, though CFS is included as an alternative term in the iCAT demo field for External definitions which have been imported into the " Start-up List" from affiliate publications, other classification systems and National Modifications of ICD to kick start the revision process or which may be being used for example purposes.)
  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    German Modification ICD-10-GM

    German Modification ICD-10-GM

    ICD-10-GM Version 2010

    ICD-10-GM Version 2010
    Kapitel VI

    Krankheiten des Nervensystems (G00-G99)
    Sonstige Krankheiten des Nervensystems (G90-G99)


    G93 Sonstige Krankheiten des Gehirns

    G93.3 Chronisches Mdigkeitssyndrom

    Benigne myalgische Enzephalomyelitis
    Chronisches Mdigkeitssyndrom bei Immundysfunktion
    Postvirales Mdigkeitssyndrom
  20. Gerwyn

    Gerwyn Guest


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