**Medical validation of ME/CFS, Canadian (Int'l) Criteria article

Discussion in 'Fibromyalgia Main Forum' started by Jeanne-in-Canada, Aug 23, 2005.

  1. Jeanne-in-Canada

    Jeanne-in-Canada New Member


    I am very impressed w/ the specifics of this article. I found it by doing a search on Dr. Anil Jain, Bsc. MD. He is one of my dxing docs, and specializes in research on env. dis. and sits on most med boards internationally. He is very compassionate to sufferers, and just plain yummy to look at too. (Like the importance of good bedside manner, the eyecandy factor doesn't hurt either).

    He's just one of the presiding docs that put together this very thorough article, which I'll post in sections because of size. The first 2 sections mostly sum it up, and the rest goes into specifics on symptoms. It discusses children w/ it too, and many other things. I felt so validated skimming it and you will too, we need that so much.



    [This Message was Edited on 08/23/2005]
  2. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    This document is commonly refered to as the ME/CFS Canadian Protocols / Criteria
    Myalgic Encephalomyelitis / Chronic Fatigue Syndrome:
    Clinical Working Case Definition,
    Diagnostic and Treatment Protocols

    Bruce M. Carruthers, MD, CM, FRCP(C)
    Anil Kumar Jain, BSc, MD
    Kenny L. De Meirleir, MD, PhD
    Daniel L. Peterson, MD
    Nancy G. Klimas, MD
    A. Martin Lerner, MD, PC, MACP
    Alison C. Bested, MD, FRCP(C)
    Pierre Flor-Henry, MB, ChB, MD, Acad DPM, FRC, CSPQ
    Pradip Joshi, BM, MD, FRCP(C)
    A. C. Peter Powles, MRACP, FRACP, FRCP(C), ABSM
    Jeffrey A. Sherkey, MD, CCFP(C)
    Marjorie I. van de Sande, BEd, Grad Dip Ed

    Address correspondence to: Dr. Bruce M. Carruthers, C58, Site 25, RR 1, Galiano,
    BC V0N 1P0, Canada (E-mail: carruthers@gulfislands.com).
    Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003
    © 2003 by The Haworth Press, Inc. All rights reserved.
    PDF copy
    Download here: http://uk.geocities.com/me_not_cfs/ME-CFS-canada-protocol.html



    Recent years have brought growing recognition of theneed for clinical criteria for myalgic encephalomyelitis (ME), which is also called chronic fatigue syndrome (CFS). An Expert Subcommittee of Health Canada established the Terms of Reference, and selected an Expert Medical Consensus Panel representing treating physicians, teaching faculty and researchers. A Consensus Workshop was held on March 30 to April 1, 2001 to culminate the review process and establish consensus for a clinical working case definition, diagnostic protocols and treatment protocols. We present a systematic clinical working case definition that encourages a diagnosis based on characteristic patterns of symptom clusters, which reflect specific areas of pathogenesis. Diagnostic and treat ment protocols, and a short overview of research are given to facilitate a comprehensive and integrated approach to this illness. Throughout this paper, "myalgic encephalomyelitis" and "chronic fatigue syndrome" are used interchangeably and this illness is referred to as "ME/CFS."
    [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: <getinfo@haworthpressinc.com> Website: <http://www.HaworthPress.com> © 2003 by The Haworth Press, Inc. All rights reserved.]


    Clinical case definition, myalgic encephalomyelitis,chronic fatigue syndrome, ME, CFS, diagnostic protocol, treatment protocol

    Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe systemic, acquired illness that can be debilitating. It manifests symptoms predominantly based on neurological, immunological and endocrinological dysfunction. While the pathogenesis is suggested to be multi-factorial, the hypothesis of initiation by a viral infection has been prominent. A wide range of viruses and other infectious agents,such as Epstein-Barr Virus (1,2,3,4,5), Human Herpesvirus-6 and 7(6,7,8,9,10), Entrovirus (11,12), Cytomegalovirus (13,14,15), Lentivirus (16), Chlamydia (17), and Mycoplasma (18,19), have been investigated but findings are mixed and there is no conclusive support for any one pathogen. As antibody titers in standard laboratory tests usually employ a whole viral preparation or a single viral polypeptide, an incomplete or mutated pathogen replication could go undetected. It is unclear whether the pathogens play a direct causal role, accompany an underlying infection, trigger reactivation/replication of latent pathogens, represent reactivated latent pathogens, activate a neural response or modulate the immune system to induce ME/CFS (20). Possibly a new microbe willbe identified. Viral involvement is supported by an infectious initiating trigger in at least half of the patients (21), and by confirmed findings of biochemical dysregulation of the 2-5A synthetase/ribonuclease L (RNaseL) antiviral defense pathway in monocytes (22,23,24,25,26), a pathwaywhich is activated in viral disorders (27).

    Before acquiring the illness most patients were healthy, leading full and active lifestyles. ME/CFS most frequently follows an acute prodromal infection, varying from upper respiratory infections, bronchitis or sinusitis, or gastroenteritis, or an acute "flu-like" illness. Other prodromal events that may stress the neuroimmunoendocrine regulatory system include immunization, anesthetics, and exposure to environmental pollutants (28), chemicals, and heavy metals (29). Physical trauma such as a motor vehicle accident, a fall, or surgery may also trigger ME/CFS. In rare occasions, ME/CFS has developed following a blood transfusion. Within days or weeks of the initiating event, patients show a progressive decline in health and develop a cascade of symptoms. The subset of patients that have a gradual onset are less likely to show discrete triggering events.

    ME/CFS is primarily an endemic disorder (30,31) but occurs in both epidemic (2,32), and sporadic forms. It affects all racial/ethnic groups, is seen in all socioeconomic strata (33,34,25). Epidemiological studies have indicated a wide range of prevalence, from 75 to 2,600 per 100,000 (36,37,38,39,40,41) in different care settings; however, in a large sample of over 28,000 adults, 422 per 100,000 or 0.42% suffered from ME/CFS (36). It is more prevalent in females (522 per 100,000), as is arthritis and rheumatism. When comparing the ME/CFS prevalence figures for women with those for other illnesses, such as AIDS (12 per 100,000), breast cancer (26 per 100,000) (36), lung cancer (33 per 100,000) and diabetes (900 per 100,000), one realizes the need for a clinical definition and research for ME/CFS.

    In response to cluster outbreaks of this illness, a working case definition for CFS was published under the aegis of the Centers for Disease Control (CDC), U.S.A. in 1988 (42). Their 1994 revised definition (43)has been used as the standard in Canada. These definitions, along with the 1988 and 1990 Australian definitions (30,38), and the 1991 Oxford, U.K. definition (44) have provided a basis for inter-subjective agreement and have played an essential role in orienting clinical research.

    As the CDC definition was primarily created to standardize research, it may not be appropriate to use for clinical diagnoses, a purpose for which it was never intended. There has been a growing demand within the medical community for a clinical case definition for ME/CFS for the benefit of the family physician and other treating clinicians. The CDC definition, by singling out severe, prolonged fatigue as the sole major (compulsory) criterion, de-emphasized the importance of other cardinal symptoms, including post-exertional malaise, pain, sleep disturbances, and cognitive dysfunction. This makes it more difficult for the clinician to distinguish the pathological fatigue of ME/CFS from ordinary fatigue or other fatiguing illnesses.

    Based on the consensus panel's collective extensive clinical experience diagnosing and/or treating more than twenty thousand (20,000) ME/CFS patients, a working clinical case definition, that encompassed the pattern of positive signs and symptoms of ME/CFS, was developed. The objective was to provide a flexible conceptual framework for clinical diagnoses that would be inclusive enough to be useful to clinicians who are dealing with the unique symptomatic expression of individual patients and the unique context within which their illness arises. The panel felt there was a need for the criteria to encompass more symptoms in order to reflect ME/CFS as a distinct entity and distinguish it from other clinical entities that have overlapping symptoms. As fatigue is an integral part of many illnesses, the panel concurred that more of the prominent symptoms should be compulsory.

    Our strategy was to group symptoms together which share a common region of pathogenesis, thus enhancing clarity and providing a focus to the clinical encounter. The inclusion of more of the potential spectrum of symptomatology in the clinical definition should allow a more adequate expression of the actual symptoms of any given patient's pathogenesis. We hope that the clinical working case definition will encourage a consideration of the ongoing interrelationships of each patient's symptoms and their coherence into a syndrome of related symptoms sharing a complex pathogenesis rather than presenting a "laundry list" of seemingly unrelated symptoms. We believe this will sharpen the distinction between ME/CFS and other medical conditions that may be confused with it in the absence of a definite laboratory test for ME/CFS.

    Since the development of our clinical criteria, we have had an opportunity to review the analysis of symptoms in over 2,500 patients by De Becker et al. (45). They found that the Holmes definition (42) of fatigue, swollen/tender lymph nodes, sore throat, muscle weakness, recurrent flu-like symptoms, post-exertional fatigue, myalgia, memory disturbance, nonrestorative sleep and replacing low-grade fever with hot flashes; and the addition of ten other symptoms (attention deficit, paralysis, new sensitivities to food/drugs, cold extremities, difficulties with words, urinary frequency, muscle fasciculations, lightheadedness, exertional dyspnea and gastrointestinal disturbance) strengthen the ability to select ME/CFS patients. Based on this study, we added exertional dyspnea and muscle fasciculations to our clinical definition. All the symptoms which the De Becker et al. study (45) recommended adding to strengthen the ability to select ME/CFS patients are in our definition except paralysis, which the panel did not consider prevalent enough for inclusion in a clinical definition. The clinical definition has additional symptoms, such as orthostatic intolerance, which we feel are important in a clinical setting.
  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member


    Although it is unlikely that a single disease model will account for every case of ME/CFS, there are common clusters of symptoms that allows a clinical diagnosis.
    Clinical Working Case Definition of ME/CFS

    A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and adhere to item 7.

    1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

    2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period­usually 24 hours or longer.

    3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.

    4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity.

    5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances - ­eg., spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload1 phenomena: cognitive, sensory - ­eg., photophobia and hypersensitivity to noise ­and/or emotional overload, which may lead to "crash"2 periods and/or anxiety.

    6. At Least One Symptom from Two of the Following Categories:
    a. Autonomic Manifestations: orthostatic intolerance­neurally me diated hypotenstion (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.
    b. Neuroendocrine Manifestations: loss of thermostatic stability subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change­anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.
    c. Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

    7. The illness persists for at least six months. It usually has a distinct onset,** although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children.
    To be included, the symptoms must have begun or have been significantly altered after the onset of this illness. It is unlikely that a patient will suffer from all symptoms in criteria 5 and 6. The disturbances tend to form symptom clusters that may fluctuate and change over time. Children often have numerous prominent symptoms but their order of severity tends to vary from day to day.

    * There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset.

    ** Some patients have been unhealthy for other reasons prior to the onset of ME/CFS and lack detectable triggers at onset and/or have more gradual or insidious onset.

    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, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, 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 rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological 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 potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.
    Co-Morbid Entities:

    Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud's Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimoto's thyroiditis, Sicca Syndrome, etc.
    Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be "overlap syndromes."
    Idiopathic Chronic Fatigue:

    If the patient has unexplained prolonged fatigue (6 months or more) but has insufficient symptoms to meet the criteria for ME/CFS, it should be classified as idiopathic chronic fatigue.

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

    1. Assess Patient's 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 patient's life experience and activities. In assessing severity and impact, compare the patient's 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.

    {next section will be} Discussion of Major Features of ME/CFS

  4. elsa

    elsa New Member

    I may not be completely clear at the moment ... nap time , you understand ! LOL ... I did want to say thank you in a big way for posting this for us.

    It is the most comprehensive definition/criteria for CFS that I have ever come across. When my brain is back from nap time, I'm going to e-mail it to myself and then print it out for my husband and doctor. Maybe even family members. I am one of the lucky ones with a good dr./family support group, but it never hurts to have such a validation on hand.

    After posting back and forth with Tansy yesterday over the horrible troubles the UK is facing .... I have to wonder if this abstract could help in any way. Maybe you could flag her if she doesn't run across this particular post.

    You have shared some really good information in the past, but this post almost feels like a treasure find for me ..... and I don't have to fight for understanding.

    Just think how many others who have to struggle day in and day out just for recognition will benefit greatly from your post !

    From my heart , thank you again for taking the time to list all of this.

  5. tansy

    tansy New Member

    to have the Canadian diagnostic criteria and treatments guidlelines adopted in the UK. It would instantly negate the PACE trials (CBT & GET) and what is going on at the nationally funded chronic fatigue centres.


    Action for ME are not interested, and the ME Association's senior medical advisor isn't either. No prizes for guessing why this might be.


    Thanks for creating a new topic for this excellent document. It has been quite some time since the CG were last posted about here, many genuine ME/CFS specialists would like to see the CG accepted and regularly updated world wide.


    Thanks for thinking of us. If the proposed parliamentary Inquiry goes ahead, and it is conducted fairly, I have no doubt this document will be presented as being more accurate than the Oxford Criteria. The Oxford Criteria has only succeeded in muddying the waters and serving the best interests of its authors (Wessely School), not PWME/Cs.


    [This Message was Edited on 08/23/2005]
  6. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Discussion of Major Features of ME/CFS


    The fatigue of ME/CFS comes in many `flavours' (47). Patients learn to recognize the difference between `normal' and `ME/CFS' fatigue by its qualitative flavour, its temporal characteristics and its correlation with other events and activities. The patient must have a marked degree of unexplained, persistent or recurrent fatigue. The fatigue should be severe enough to substantially reduce the patient's activity level, usually by approximately 50%. When considering the severity of the fatigue, it is important to compare the patient's activity level to their premorbid activity level. For example, a former world class athlete could have a substantially reduced activity level and still exceed the norms for sedentary persons. Some patients may be able to do somework, but in order to do that they have had to eliminate or severely reduce other aspects of their life activities. Such interactive effects should be considered in the assessment of whether activity reduction is substantial.

    Evidence of cognitive fatiguing should be sought in the history and may be evident during the clinical interview. Over the duration of the interview the patient's responses may become slower and less coherent. The patient may begin to have difficulty with choosing the correct words, recalling information, or become confused. Occasionally asking more than one question at a time may make the fatiguing more evident. However these changes may be quite subtle, as patients have often learned to compensate for cognitive fatigue with hyper-concentration, and have often developed strategies for taking cognitive micro-rests such as changing the subject, taking postural breaks, reducing sensory stimulation, etc. They may be quite unaware of these strategies.

    Post-Exertional Malaise and/or Fatigue

    The malaise that follows exertion is difficult to describe but is often reported to be similar to the generalized pain, discomfort and fatigue associated with the acute phase of influenza. Delayed malaise and fatigue may be associated with signs of immune activation: sore throat, lymph glandular tenderness and/or swelling, general malaise, increased pain or cognitive fog. Fatigue immediately following activity may also be associated with these signs of immune activation. Patients who develop ME/CFS often lose the natural antidepressant effect of exercise, feeling worse after exercise rather than better. Patients may have a drop in body temperature with exercise. Thus fatigue is correlated with other symptoms, often in a sequence that is unique to each patient. After relatively normal physical or intellectual exertion, a patient may take an inordinate amount of time to regain her/his pre-exertion level of function and competence.

    For example, a patient who has bought a few groceries may be too exhausted to unpack them until the next day. The reactive fatigue of post-exertional malaise or lack of endurance usually lasts 24 hours or more and is often associated with impairment of cognitive functions. There is often delayed reactivity following exertion, with the onset the next day, or even later. However, duration of symptoms also varies with the context. For example, patients who have already modified their activities to better coincide with the activity level they can handle without becoming overly fatigued will be expected to have a shorter recovery period than those who do not pace themselves adequately.
  7. Jeanne-in-Canada

    Jeanne-in-Canada New Member

  8. Pianowoman

    Pianowoman New Member

    Thanks Jeanne,

    I'm glad you have started this thread because this kind of information is not available in too many places.

    There is more to this. The complete document which includes quite a bit on treatment is available in the Journal of Chronic Fatigue Syndrome Volume 11 Number 1 2003. It is available from The Haworth Medical Press and I believe I saw it on Amazon as well.

  9. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    so far. I'm posting in smaller chunks so people can read it w/out feeling too overwhelmed. Many won't read huge articles, when I'm really funky I can't either (like today). The bibliography alone is 237 references, and I will post it at the end. Boy did they do their homework.

    I've made sure to post the address where the whole article can be printed out, and I'll post again:

  10. lucky

    lucky New Member

    Just a little info in regards to Jeanne's printed article - The Ontario Medical Association is recognizing CFS under the category of a neurological illness and OHIP had to inform all doctors about this recognition. In other words, no doctor in Ontario can ignore the fact anymore that this illness is not real and has to treat patients with CFS accordingly. I believe that with all the pressure from various ME groups and patients, this is really some achievement to get CFS finally legalized.

    Best wishes, Lucky
  11. pepper

    pepper New Member

    What a terrific article. I am printing it off as a definite keeper.

  12. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    When did the orders come down in Ontario? Could you find us a little article on it? Could ya, maybe, please, could ya.

  13. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Proud to be Canadian!

    *I'll go flagellate meeseff for my sins of pride now*

  14. Pianowoman

    Pianowoman New Member


    I agree about the proud part! There is a little note on the web-site of the Myalgic Encephalomyelitis Association ( Did I actually type all that correctly!?) dated Dec.23 noting that there is a new OHIP code 795 for CFS. I remember at the time my Doctor told me that it was under neurological illnesses.

    The web-site is www.meao-cfs.on.ca

  15. lucky

    lucky New Member

    It is indeed a milestone to have CFS/ME recognized in Ontario, and I am copying the official document for your info.:

    "ME/CFS Given Official Recognition by Ontario Government!

    This means that no one in Ontario who suffers from ME/CFS can ever again be told by a doctor that ME/CFS does not exist. If they do, tell them to look up Diagnostic Code 795. 'Chronic Fatigue Syndrome' has been given the

    OHIP Diagnostic Code 795 by the Ontario Medical Association as a Neurological Illness!

    Ideally, we wanted the Diagnostic Code to read: 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, but we had to take what the Ontario Medical Association approved. The most important fact is that 'Chronic Fatigue Syndrome' is now officially recognized as a Neurological Illness in the Province of Ontario, Canada. Perhaps the other Provincial Ministries of Health in Canada will follow?

    It has taken many years to get to this point of lobbying, meetings, etc. With the publication of the Canadian Definition, which was initiated by the National ME/FM Action Network, this made this possible. Over the last several years, The Myalgic Encephalomyelitis Association of Ontario has been in meetings with the Ontario Ministry of Health to lobby for a Diagnostic Code and we are so pleased that we now finally have one. Dr. Alison Bested did a fantastic presentation to the Ontario Medical Association. What does it mean to have a (CFS) code"? It means that:

    1. NO physician can ever say again that our illness does not exist;

    2. All physicians in Ontario will receive a notice from OHIP of our new CFS Diagnostic Code 795 as a Neurological Ilness;

    3. The fact that the Ontario Medical Association gave CFS a Diagnostic Code as a Neurological Illness will cause concern to Insurance companies;

    4. It will help individuals applying for Ontario Disability Support Program and the Canada Pension Disability Plan;

    5. It now makes it possible to collect Statistics in Ontario; and

    6. It will hopefully give incentive to the other provinces to follow.

    NOTE: The CFS Diagnostic Code is given to someone who is being diagnosed with CFS for the first time. The code is not a time-based fee code. Follow up appointments for any illness (heart disease, MS, CFS, etc. at the present time is usually billed as Supportive Therapy if you take more time than a normal appointment.

    [Ed. Note: Congratulations and Thanks for making this happen to Dr. Alison Bested and The Myalgic Encephalomyelitis Association of Ontario. They can be reached at 2336 Bloor Street West, P.O. Box 84522, Toronto, ON M6S 4Z7 Tel. (416) 222-8820 or 1-877-532-6682 Web:meao-cfs.on.ca).

    Best wishes, Lucky

  16. pepper

    pepper New Member

    This is important information.

    Bumping for all Ontarians to see.

  17. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I special requested that, thanks for coming through. VIP info.

  18. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Sleep Dysfunction

    Sleep and other diurnal rhythm disturbances may include early, middle or late insomnia, with reversed or irregularly irregular insomnia, hypersomnia, abnormal diurnal variation of energy levels, including reversed or chaotic diurnal rest and sleep rhythms. This results in lack of tolerance for shift work/activity or time zone shifts when travelling.Loss of the deeper phases of sleep is especially characteristic, with frequent awakenings, and loss of restorative feelings in the morning. Restless leg syndrome and periodic limb movement disorder often accompany sleep disturbance. A very small percentage of ME/CFS patients do not have sleep dysfunction, but do not fit any other diseasecriteria.

    Sleep Study: It is important to rule out treatable sleep disorders such as upper airway resistance syndrome, obstructive and central sleep apnea and restless leg syndrome. Indications: the patient wakes up out of breath, or there is great disturbance of the bed clothes, or a sleep partner indicates that the patient snores and/or appears to stop breathing at times and/or has significant movement of her/his legs while sleeping. If poor sleep is a troublesome symptom, which does not improve with medication and sleep hygiene, it may be appropriate to have the patient assessed at a sleep clinic.


    Pain is often generalized and `nonanatomical,' i.e., not confined to any expected structural or nerve root distribution. The pain occurs in unexpected places at unexpected times. There are pains of many qualities: sharp, shooting, burning and aching. Many patients have significant new onset headaches of many types, including tension and pressure headaches and migraines. There is often generalized myalgia and excessive widespread tenderness or pain that is usually perceived to originate in the muscles but is not limited to the classical FMS tender points.Patients have a lowered pain threshold or "chronic, widespread allodynia" (48) with approximately 75% of ME/CFS patients exhibiting positive FMS tender points (49). Pain may also spread from pressure on myofascial trigger points (MTP). Arthralgia without joint swelling may be experienced but is not discriminatory for ME/CFS (45,47). A very small percentage of ME/CFS patients do not have appreciable pain, but do not fit any other disease criteria. ME/CFS should only be entertained as a diagnosis for this group when otherwise classical features follow an infectious illness, and where other diseases have been adequately ruled out.

    [This Message was Edited on 08/24/2005]
  19. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Neurological/Cognitive Dysfunctions

    The neurological/cognitive symptoms are more characteristically variable than constant and often have a distinct fatiguing component to them. Especially common are cognitive `fog' or confusion, slowed in formation processing speed, trouble with word retrieval and speaking or intermittent dyslexia, trouble with writing, reading, and mathematics, and short-term memory consolidation. There may be ease of interference from concomitant cognitive and physical activities, and sensory stimulation. It is easy to lose track of things and/or many things are forgotten: names, numbers, sentences, conversations, appointments, ones' own intentions and plans, where things are in the house, where one has left the car, whether one has brought the car, where one is and where one is going. The memory dysfunction tends to primarily affect short-term memory. There are selective deficits in memory processing arising against a background of relatively normal cognitive functioning in ME/CFS patients. They experience more difficulty in recalling information under conditions of greater semantic structure and contextual cues, the opposite of what is found in controls and patients with other sorts of CNS impairments. They also experience difficulty maintaining attention in situations that cause them to divide their efforts, e.g., between auditory and visual channels.

    Perceptual Disturbances: Less ability to make figure/ground distinctions, loss of depth perception or inability to focus vision and attention. One may lose portions of the visual field or one can only make sense of a small portion of it at a time. There are dimensional disturbances in timing which affect the ability to sequence actions and perceptions, and cope with complex and fast paced changes such as shift work and jet lag. Spatial instability and disorientation come in many varieties, with gait tracking problems, loss of cognitive map and inaccurate body boundaries - ­e.g., one bumps into the side of the doorway on trying to go through it and/or walks off the sidewalk, where the ground feels unstable.

    Motor Disturbances: Ataxia, muscle weakness and fasciculations, loss of balance and clumsiness commonly occur. There may be an inability to automatically `attune' to the environment, as in accommodating footfall to irregular ground while walking and temporary loss of basic habituated motor programs such as walking, brushing one's teeth, making the bed and/or dialing a telephone. Overload phenomena affect sensory modalities where the patient may be hypersensitive to light, sound, vibration, speed, odors, and/or mixed sensory modalities. Patients may be unable to block out background noise sufficiently to focus on conversation. There is also cognitive/informational overload­inability to multi-task, and trouble making decisions. There is emotional overload from extraneous emotional fields that unduly disturb the patient. There is motor overload­patients may become clumsy as they fatigue, and stagger and stumble as they try to walk, are not able to keep a straight line, as well as showing generalized and local weakness, and need to slow down their movements. All of these overload disturbances may form symptom clusters characteristic of the individual patient such as dizziness, numbness, tinnitus, nausea, or shooting pain. These overload phenomena may precipitate a `crash' where the patient experiences a temporary period of immobilizing physical and/or mental fatigue.

    {reminder, the site address is at beginning of thread for those that don't want to have to print this out in annoying little chunks. I'm just posting it this way for those that can't read big articles, Jeanne}
  20. Jeanne-in-Canada

    Jeanne-in-Canada New Member