ME DEFINITIONS / SELECTED CLINICAL CRITERIA & GUIDANCE:

NOTE: Some of the information below (which is illustrative, not exhaustive) is likely to be

augmented / revised and readers are advised to consult the following links for updates:

http://www.who.int/classifications/icd/ICDRevision/en/index.html

http://www.who.int/classifications/icd/en

http://www.co-cure.org/

http://www.meresearch.org.uk/index.html

http://www.cdc.gov/

CONTENTS:

1. Disease Outline and WHO ICD-10 Categorisation of ME.

2. Dr Melvin Ramsay - Historical Description of ME.

3. Oxford Criteria.

4. London Criteria.

5. CDC (USA Centres for Disease Control and Prevention).

6. International (Canadian) Criteria.

7. Stein - Clinical Guideline for Psychiatrists.

8. The Nightingale Definition of ME.

9. Official & Highly Controversial UK ‘CFS/ME’ Guidelines.

10. Other Important UK Documents.

1. Disease Outline and WHO ICD-10 Categorisation of ME:

 

ME DEFINED: Myalgic Encephalomyelitis (myalgic= muscle-pain, encephalo= brain, myelitis= spinal-cord, encephalomyelitis= inflammation of brain & spinal-cord) is a long-term organic/ biomedical multi-system neurological illness. ME is not a psychiatric or behavioural illness (see below) and has in fact appeared in the medical literature since the 1930s.

ME has been recognised by the WHO (World Health Organisation) since 1969 and classified as a biomedical neurological disorder in its International Classification of Diseases tenth revision (ICD-10) at ICD-10-G93.3. Unfortunately, there have been many misguided and politically-driven misrepresentations of the WHO position and ME terminology. To complicate matters further, some countries (Germany and the USA, for example) have implemented or are implementing their own amended national “Clinical Modification” versions of the WHO ICD: some of which affect the ME/PVFS classification within. Most other countries however, including the UK, subscribed to the standard version of WHO ICD 10.

Do note that the WHO is in the process of revising/upgrading and consulting upon its entire international classification of diseases under its eleventh revision (WHO ICD 11). The WHO have stated their timetable for this upgrade (which may or may not include substantial changes to ME/PVFS(CFS)) was as follows but there have been delays and readers are advised to consult the WHO ICD Revision web pages at the below link: 

For further information and updates on the eleventh revision of the International Classification of Diseases see:

http://www.who.int/classifications/icd/ICDRevision/en/index.html

https://sites.google.com/site/icd11revision/home

The standard/unmodified WHO ICD-10 primary tabular list permits the use of the following alternative name for ‘Benign Myalgic Encephalomyelitis/ME’: 'Post Viral Fatigue Syndrome/PVFS' in its disease classification.

ICD-10 classifies ME/PVFS under Diseases of the Nervous System at section G93.3 (Other disorders of brain) and nowhere else. In doing so it implicitly recognises the role of viral involvement (see section 9 below) in the disease and specifically excludes the disease from mental and behavioural disorders.

The term 'Chronic Fatigue Syndrome/CFS' is not entered/categorised anywhere in the ICD-10 tabular list at all but is listed in the ICD-10 alphabetical index as a term by which ME/PVFS may be referred to:

In clarifying this point to members of the UK ME community, the WHO stated “ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. The index (i.e. volume iii) cannot be taken as definitive.” [Dr Robert Jacob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO HQ, Geneva. 4^th February 2009].

Again, some confusion has arisen here not only because some countries have their own “Clinical Modification” version of ICD 10 but because the WHO did not put all of the details of their ICD 10^th Revision in their on-line website summary. For accuracy therefore, full reference needs to be made to the three-volume published/book version of ICD 10 (especially the alphabetical index/volume 3 as well as the tabular list/volume 1) the bibliographic details of all three volumes are:

- International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 1 – Tabular List – ISNB: 92 4 154649 2.

- International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 2 – Instruction Manual – ISNB: 92 4 154653 0.

- International Statistical Classification of Diseases and Related Health Problems -

Tenth Revision – Second Edition: Volume 3 – Alphabetical Index – ISBN: 92 4 154654 9.

The three WHO volumes of ICD-10 can be accessed via academic libraries and some public libraries and are of course available directly from the WHO at:

http://www.who.int/classifications/icd/en

 

Note that the standard three volume WHO ICD-10 does not permit use of the truncated and wholly inadequate term 'Chronic Fatigue' as a reference to ME/PVFS in the tabular list, the alphabetical index or anywhere else. Also, long-term ICD-10 PVFS that is ME is not synonymous with short-term and less serious post viral syndromes. Neither is WHO-ICD-10-recognised ME the same thing as 'CFS/ME': the latter being a relatively recent term arguably designed to confuse matters by those ignoring the organic and neurological nature of ME that is underpinned by both a large body of clinical and research evidence and WHO ICD-10 disease taxonomy. Moreover, WHO/ICD-10 Myalgic Encephalomyelitis is not the same disease entity as Myalgic Encephalopathy: the latter '-opathy' term, like 'CFS/ME' is completely unclassified by the WHO/ICD-10 and its use to describe ICD-10 ME/PVFS is not recommended. Indeed, as Dr Bruce Carruthers, Senior Fellow of the Canadian Royal College and principle lead of the international expert team that produced the highly respected International ME Clinical Case Definition in Canada stated in 2005:

“The Politics around this are horrendous, and the motive for any name change would seem to have less than the good of mankind at heart. I would not favour any kind of name change, since -itis is well established in the name ME, and there is no good reason for changing it, since - opathy would not reduce our state of ignorance re ME but serve to further confuse everyone- perhaps that is one of the motives behind the suggestion." 

[Dr Bruce Carruthers, 2005: quotation viewable on-line at:

www.investinme.org/Article%20010-Encephalopathy%20Carruthers.htm

And as Professor Malcolm Hooper unequivocally states: “Despite the claims of some Psychiatrists, it is not true that there is no evidence of inflammation of the brain and spinal cord in ME.” See: www.investinme.org/Article%20010-Encephalopathy%20Hooper.htm

And leading international ME specialist Dr Byron Hyde states:

“Recently an M.E. patient's spine has been examined in the UK and the inflammatory nature was also discovered. Myalgic Encephalitis is a diffuse inflammatory injury of the capillaries at the level of the basement membrane of the brain. It makes no sense to rename the horse and call it Myalgic Encephalopathy. All brain pathologies involving brain tissue are encephalopathies. Let us stop fussing around and get back to the real problem and that is investigating the patients.” [Dr Byron Hyde MD 2006]: www.nightingale.ca/

 

And also see:  www.meactionuk.org.uk/Note_on_the_term_ME.htm

To complicate matters, the term ‘Chronic Fatigue Syndrome’ has been much used and abused by vested interests trying to dishonestly re-label biomedical WHO-recognised ME/PVFS as a psychiatric disorder: in spite of the large and growing body of peer-reviewed biomedical evidence to the contrary. As Professor Malcolm Hooper states, the renaming of ME to Chronic Fatigue Syndrome (CFS) in 1988, giving misplaced emphasis to “fatigue”, trivializes the substantial disability of the disease. Such abuses of medical taxonomy allow medical insurance companies and benefits agencies to potentially save billions of £s/$s across the globe and serves to mislead press and public about the true documented nature of the complex physical disease that is ME. This is hugely impacting upon public as well as private health and welfare policy and caused a 2006 UK Parliamentary group of inquiry to caution:

 

“Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body.”

 

[Page 30 of the joint Commons/Lords Group on the Scientific Research into ME (GSRME) Report – see section 6 below].

www.erythos.com/gibsonenquiry/index.html

Thus, some biomedical ME campaigners/clinicians, if they use the misleading term ‘Chronic Fatigue Syndrome/CFS’ at all, have prefaced it with ‘ICD(10)’: to read ‘ICD-(10) Chronic Fatigue Syndrome’ or ‘ICD-(10) CFS’ in an attempt to ensure it is understood that they are referring to the biomedical disorder classified by the WHO at ICD-10-G93.3 and not entirely separate psychological conditions classified by the WHO at ICD-10-F48 and elsewhere. See for example Professor Malcolm Hooper's et al document entitled: What is ME? What is CFS? Information for Clinicians and Lawyers at:

www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

2. Dr Melvin Ramsay - Historical Description of ME:

Although historical figures such as Florence Nightingale are believed to have suffered with this illness and mention of M.E. in medical literature goes back as far as the 1930's, the first clinically documented outbreak of M.E. in the UK, at the Royal Free Hospital in July 1955, was attended and noted by Dr. Melvin Ramsay. The disease is described thus (formalised in 1988):

ME is an endemic disease which is subject to periodic epidemics.

Onset

Onset may be sudden and without apparent cause, for example a sudden attack of acute vertigo. There is usually a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract. All cases have low grade pyrexia (up to 38 deg C) usually subsiding within a week.

Subsequently there is persistent and profound fatigue, accompanied by a medley of symptoms such as headache, giddiness and a number of muscle symptoms such as pain, cramp, twitching, tenderness and weakness (especially after exercise). Other symptoms include paraesthesia, frequency of micturition [urination], blurred vision and/or diplopia, hyperacusis (sometimes alternating with deafness or normal hearing), tinnitus, fainting attacks which may be the result of hypoglycaemia and a general sense of "feeling awful".

The Established Syndrome

Once the syndrome is fully established there are three groups of symptoms:

 


Ramsay’s description of the symptoms and nature of the disease has become something of a classical/benchmark definition of ME and is set out further in the following document by Dr Ramsay:

MYALGIC ENCEPHALOMYELITIS:

A Baffling Syndrome with a Tragic Aftermath.

Melvin Ramsay M.D.

Hon Consultant Physician Infectious Diseases Dept, Royal Free Hospital.

[Published 1986]

The syndrome which is currently known as Myalgic Encephalomyelitis in the UK and Epidemic Neuromyasthenia in the USA leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.

Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of 'feeling awful'. Many patients report the occurrence of fainting attacks which abate after a small meal or even a biscuit, and in an outbreak in Finchley, London, in 1964 three patients were admitted to hospital in an unconscious state presumably as a result of acute hypoglycaemia. There is usually a low-grade pyrexia [fever] which quickly subsides. Respiratory symptoms such as sore throat tend to persist or recur at intervals. Routine physical examination and the ordinary run of laboratory investigations usually prove negative and the patient is then often referred for psychiatric opinion. In my experience this seldom proves helpful is often harmful; it is a fact that a few psychiatrists have referred the patient back with a note saying 'this patient's problem does not come within my field'. Nevertheless, by this time the unfortunate patient has acquired the label of 'neurosis' or 'personality disorder' and may be regarded by both doctor and relatives as a chronic nuisance. We have records of three patients in whom the disbelief of their doctors and relatives led to suicide; one of these was a young man of 22 years of age.

The too facile assumption that such an entity - despite a long series of cases extending over several decades - can be attributed to psychological stress is simply untenable. Although the aetiological factor or factors have yet to be established, there are good grounds for postulating that persistent virus infection could be responsible. It is fully accepted that viruses such as herpes simplex and varicella-zoster remain in the tissues from the time of the initial invasion and can be isolated from nerve ganglia post-mortem; to these may be added measles virus, the persistence of which is responsible for subacute sclerosing panencephalitis that may appear several years after the attack and there is a considerable body of circumstantial evidence associating the virus with multiple sclerosis. There should surely be no difficulty in considering the possibility that other viruses may also persist in the tissues. In recent years routine antibody tests on patients suffering from myalgic encephalomyelitis have shown raised titres to Cocksackie B Group viruses. It is fully established that these viruses are the aetiological agents of 'Epidemic Myalgia' or 'Bornholm's Disease' and that, together with ECHO viruses; they comprise the commonest known virus invaders of the central nervous system. This must not be taken to imply that Cocksackie viruses are the sole agents of myalgic encephalo- myelitis since any generalised virus infection may be followed by a period of post-viral debility. Indeed, the particular invading microbial agent is probably not the most important factor. Recent work suggests that the key to the problem is likely to be found in the abnormal immunological response of the patient to the organism.

A second group of clinical features found in patients suffering from myalgic encephalomyelitis would seem to indicate circulatory disorder. Practically without exception they complain of coldness in the extremities and many are found to have abnormally low temperatures of 94 or 95 degrees F. In a few, these are accompanied by bouts of severe sweating even to the extent of waking during the night lying in a pool of water. A ghostly facial pallor is a well known phenomenon and this has often been detected by relatives some 30 minutes before the patient complains of being ill.

The third component of the diagnostic triad of myalgic encephalo- myelitis relates to cerebral activity. Impairment of memory and inability to concentrate are features in every case. Many report difficulty in saying the right word and are conscious of the fact that they continue to say the wrong one, for example 'cold' when they mean 'hot'. Others find that they start a sentence but cannot complete it, while some others have difficulty comprehending the written or spoken word. A complaint of acute hyperacusis is not infrequent; this can be quite intolerable but alternates with periods of normal hearing or actual deafness. Vivid dreams generally in colour are reported by persons with no previous experience of such a phenomenon. Emotional lability is often a feature in a person of previous stable personality, while sudden bouts of uncontrollable weeping may occur. Impairment of judgement and insight in severe cases completes the 'encephalitic' component of the syndrome.

I would like to suggest that in all patients suffering from chronic debility for which a satisfactory explanation is not forthcoming a renewed and much closer appraisal of their symptoms should be made. This applies particularly to the dominant clinical feature of profound fatigue. While it is true that there is considerable variation in degree from one day to the next or from one time of the day to another, nevertheless in those patients whose dynamic or conscientious temperaments urge them to continue effort despite profound malaise or in those who, on the false assumption of 'neurosis', have been exhorted to 'snap out of it' and 'take plenty of exercise' the condition finally results in a state of constant exhaustion. This has been amply borne out by a series of painstaking and meticulous studies carried out by a consultant in physical medicine, himself an ME sufferer for 25 years. These show clearly that recovery of muscle power after exertion is unduly prolonged. After moderate exercise, from which a normal person would recover with nothing more than a good night's rest, an ME patient will require at least 2 to 3 days while after more strenuous exercise the period can be prolonged to 2 or 3 weeks or more. Moreover, if during this recovery phase, there is a further expenditure of energy the effect is cumulative and this is responsible for the unrelieved sense of exhaustion and depression which characterises the chronic case. The greatest degree of muscle weakness is likely to be found in those muscles which are most in use; thus in right- handed persons the muscles of the left hand and arm are found to be stronger than those on the right. Muscle weakness is almost certainly responsible for the delay in accommodation which gives rise to blurred vision and for the characteristic feature of all chronic cases, namely a proneness to drop articles altogether with clumsiness in performing quite simple manoeuvres; the constant dribbling of saliva which is also a feature of chronic cases is due to weakness of the masseter muscles. In some cases, the myalgic element is obvious but in others a careful palpitation of all muscles will often reveal unsuspected minute foci of acute tenderness; these are to be found particularly in the trapezii, gastrocnemii and abdominal rectii muscles.

The clinical picture of myalgic encephalomyelitis has much in common with that of multiple sclerosis but, unlike the latter, the disease is not progressive and the prognosis should therefore be relatively good. However, this is largely dependent on the management of the patient in the early stages of the illness. Those who are given complete rest from the onset do well and this was illustrated by the aforementioned three patients admitted to hospital in an unconscious state; all three recovered completely. Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage, but no effort should be spared to give them the all-essential basis for successful treatment. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them. Any excessive physical or mental stress is likely to precipitate a relapse.

It can be said that a long-term research project into the cause of this disease has been launched and there are good grounds for believing that this will demonstrate beyond doubt that this condition is organically determined.

 

3. Oxford Criteria:

A set of criteria created by and for psychiatrists - these criteria are far less rigorous and may include patients with fatigue as their only symptom. As such it allows far too many possibilities of inclusion of non-ME patients and serves no useful purpose, other than to aid the assertions of biased psychiatric groups who see ME as a somatoform disorder. They therefore serve no real useful or scientific purpose. Note:

Extracts from Corporate Collusion by Professor Malcolm Hooper et al:

Wessely School members have also financially supported the promulgation of their own views – for example, the meeting at which the Oxford criteria for “CFS” were conceived was financially supported by psychiatrist Peter White and it will be recalled that Peter White is paid by the medical insurance industry, which happens to hold the same interests.

Since in January 2004 the MRC’s website stated that the start date [of its PACE Trial] was 2^nd January 2004 and that the Oxford (Wessely School) criteria were being used, it was confusing to be informed just one month later by the BMJ that the trial was in its second year. It was even more confusing to be informed by the Health Minister (Lord Warner) on 26^th February 2004 that the entry criteria for the trials: “have not yet been finalised” (Hansard: 26th February 2004: HL1273).

Matters became yet more perplexing when the Health Minister confirmed on 10^th March 2004 that: “the current estimated start of recruitment of patients into both trials is the summer or autumn of 2004.  Unconfirmed criteria for both trials are that participants will meet the Oxford diagnostic criteria for CFS”. The UK ME/CFS community noted with bemusement that it is customary for the trial protocol to have been rigorously scrutinised, modified if necessary, and approved by the relevant Ethics Committee before funding was granted. This appeared to be a case of the psychiatric lobby rushing things through willy-nilly.

It is apparent to many people that by using the all-encompassing Oxford criteria, the trial objectives have been set so as to achieve this pre-determined agenda and to meet the requirements of political and commercial paymasters. The Oxford criteria expressly include people with psychiatric disorders in which “fatigue” is a prominent symptom (thereby, as noted above, potentially catching at least 33 other disorders that fit the Oxford criteria), but expressly exclude people with neurological disorders; indeed, the Oxford criteria claim to use people with neuromuscular disorders as controls, so by any logical reasoning, ME/CFS (an internationally classified neurological disorder) would be excluded. There can be no credible doubt that the Oxford criteria exclude those with ME as distinct from the Wessely School definition of “CFS” and this was confirmed in 1991 by psychiatrist Anthony David (colleague and co-author with Wessely) who described the Oxford criteria shortly after they were published: “British investigators have put forward an alternative, less strict, operational definition which is essentially chronic fatigue in the absence of neurological signs (but) with psychiatric symptoms as common associated features”  (Postviral syndrome and psychiatry. AS David. British Medical Bulletin 1991:47:4:966-988). Given such clarification, how can it be ethical for the MRC to claim that the PACE trials will include those with  Ramsay-defined ME?  The MRC, however, insists that people with “CFS/ME” will be included in the trials. On 16^th June 2005, Dr Sarah Perkins, Programme Manager for the MRC Mental Health Board, wrote: “The main entry criteria for the PACE trial are the Oxford criteria. Their use will ensure that the results of the trials will be applicable to the widest range of people who receive a diagnosis of CFS/ME.  The exclusion criterion of ‘proven organic brain disease’ will be used to exclude neurological conditions of established anatomical pathology.  It will not be used to exclude patients with a diagnosis of ME”. [ME specialists, patients and charities do not accept such reassurances].

CORPORATE COLLUSION. By Professor Malcolm Hooper et al. Available at:

www.angliameaction.org.uk/corporate-collusion

www.angliameaction.org.uk/docs/corporate-collusion.pdf

www.meactionuk.org.uk/Corporate_Collusion_2.htm http://meactionuk.org.uk/Corporate_Collusion_2.pdf

 

 

4. London Criteria:

A set of criteria apparently used by the Medical Research Council in assisting their determination of funding for ME-related projects (mostly psychiatric).

The criticisms of these criteria include the fact that they have never been published and therefore cannot be used objectively to select patients for a study. The MRC used these criteria in conducting the infamous PACE trials to study psychiatric paradigms for treatment of ME sufferers - something which most of the people in the ME community who have studied this find negligent. Note:

Extracts from Corporate Collusion by Professor Malcolm Hooper et al:

Following the outcry by the ME/CFS community about the use of the Oxford criteria as entry into the PACE trial, the MRC announced that a “secondary analysis” would be performed using the “London criteria”.

 

Was this approved by the Data Monitoring and Ethics Committee, given the legitimate concern about the so-called “London” criteria that was submitted to the MRC?

The “London” criteria have never been published and are not available as a reference for identification.  They were mentioned in the National Task Force Report in 1994 as being one of nine different proposed definitions and descriptions.

The “London” criteria have never been used in research (before criteria can be used in research, they need to be submitted for peer review and published in an accessible form).

The “London” criteria have not even been consistently defined – there are different versions of them and a definitive version has not been identified.

The authors of the “London” criteria remain to be established as there are divergent claims about who the authors might be.

The “London” criteria have never been accepted into common usage, nor have they ever been validated or operationalised.

On what scientific basis can the MRC approve any “secondary analysis” using non-existent criteria?  The “London” criteria have no justifiable or validated legitimacy that would in any way provide acceptable criteria for use by the MRC.

Moreover, no amount of “secondary analysis” using any additional criteria can select patients with ME/CFS who were by definition excluded from the MRC trials in the first place by virtue of neurological disorders being expressly excluded from the Oxford entry criteria (which basically catch patients with chronic “fatigue”).

It should be noted that the so-called “London” criteria are not the same as the Dowsett and Ramsay clinical criteria for investigation of ME, which are exceedingly useful (Postgrad Med J 1990:66:526-530).

CORPORATE COLLUSION. By Professor Malcolm Hooper et al. Available at:

www.angliameaction.org.uk/corporate-collusion

www.angliameaction.org.uk/docs/corporate-collusion.pdf

www.meactionuk.org.uk/Corporate_Collusion_2.htm http://meactionuk.org.uk/Corporate_Collusion_2.pdf

 

 

5. CDC (USA Centers for Disease Control and Prevention):

These are a revised version of earlier guidelines by the ISA CDCP.

See also - http://www.cdc.gov/ncidod/diseases/cfs/about/definition/case_definition.htm

CFS Case Definition

Overview

Chronic fatigue syndrome (CFS) is a debilitating and complex disorder characterized by intense fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. People with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Therefore, in order to be diagnosed with chronic fatigue syndrome, a patient must satisfy two criteria:


The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue.

Other Commonly Observed Symptoms in CFS


These symptoms do not contribute to the diagnosis of CFS.


“Rationale for Revising the 1988 CFS Case Definition

The research definition devised in 1988 was made deliberately narrow with the understanding that, while some cases of chronic fatigue syndrome might be missed, those cases that met the criteria would provide the best chance for identifying distinguishing features of the disorder. That was a sound strategy within limits, but its application in a variety of studies has now clearly failed to identify any traits that reliably separate CFS patients from healthy controls. The original case definition had at least one other major shortcoming, in that it failed to provide any guidelines for performing comparative studies of CFS with other illnesses marked by severe chronic fatigue.

To address these problems, an international panel of CFS researchers was convened in 1993 to revise the 1988 research case definition and to recommend guidelines for studies of CFS. These new guidelines present a research strategy for evaluation, classification, and subgrouping of fatigued persons. In essence, patients with fatigue of recent onset are classified as having prolonged fatigue (persistent or relapsing fatigue of one month or longer), unexplained chronic fatigue (six months or longer), and CFS (persistent or relapsing fatigue of six months or longer, with no medical explanation, and meeting specific symptom criteria). Persons can be further subgrouped by type of onset (gradual or sudden), the presence or absence of co-morbid (co-existing) conditions (including psychiatric conditions), fatigue levels, duration of fatigue, current level of physical function, and other epidemiologic or laboratory criteria of interest.

The guidelines also recommend specific medical evaluations for exclusionary diagnoses and the use of specific instruments to evaluate neuropsychiatric conditions, fatigue levels, and overall function.”

 

6. International (Canadian) Criteria:

Widely recognised and respected clinical guidelines from an international ME specialist panel sitting in Canada under the expert lead of Dr Bruce Carruthers, senior fellow of the Canadian Royal College of Physicians. These guidelines can also be used as a base for research criteria. Findings from the study by Leonard A. Jason PhD (Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome) indicated that the Canadian criteria captured many of the cardiopulmonary and neurological abnormalities, which were not currently assessed by the Fukuda criteria. The Canadian criteria also selected cases with 'less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms' and individuals selected by these criteria were significantly different from psychiatric controls with CFS. The guideline is available in a full version and also a handy overview version for general practice:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (‘Canadian Criteria’ – Full Version). Bruce M. Carruthers, Anil Kumar Jain, Kenny L. De Meirleir, Daniel L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested, Pierre Flor-Henry, Pradip Joshi, A. C. Peter Powles, Jeffrey A. Sherkey, Marjorie I. van de Sande. Journal of Chronic Fatigue Syndrome. Volume 11, Number 1, 2003. At:

http://fm-cfs.ca/CFS-Protocol.pdf

 

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document by Professor Bruce M Carruthers and Dr Marjorie I Van de Sande.

UK – NHS Clinician Endorsed / UK A4 Format – Version:

http://angliameaction.org.uk/docs/CanadianOverviewUK.pdf

http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf

 

 

7. Stein - Clinical Guideline for Psychiatrists:

 

A useful clinical guideline for psychiatrists - see: Chronic Fatigue Syndrome: Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists. Produced by Eleanor Stein MD FRCP(C) for FM-CFS Canada.

http://www.cfids-cab.org/MESA/Stein.pdf

 

 

 

8. The Nightingale Definition of ME:

 

Useful document from ME specialist Dr Byron Hyde emphasising the difference between Myalgic Encephalomyelitis and Chronic Fatigue illnesses - see: The Nightingale Definition of Myalgic Encephalomyelitis (M.E.).

Dr Byron Hyde, Nightingale Foundation, Toronto, Canada. Available at:

http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

 

Understanding M.E. and CFS

Dr Byron Hyde MD.

http://www.nightingale.ca/index.php?target=whatis

Background

Background

If a patient or a family member has tried to search the internet for an understanding of either Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS), they will have been overwhelmed by the multitude of technical descriptions and the numerous overlapping medical conditions. Both M.E. and CFS represent a complex, multi-system group of afflictions, adversely affecting the brain, heart, neuro-endocrine, immune and circulatory systems in our bodies and are two separate illnesses. At times, this has led to M.E. and CFS symptoms being confused with the symptoms for neurasthenia, multiple chemical sensitivities, fibromyalgia syndrome and chronic mononucleosis.

The US Centers for Disease Control and Prevention (CDC) first defined CFS in 1988. This definition was later rolled over to a more complex 1994 definition, which was subsequently corrected and corrected again. These CFS definitions have multiplied beyond the two CDC definitions and now include the Oxford Dictionary definitions of CFS (there are two of them), the Australian definitions, and the more recent Canadian definition that talks of M.E. / CFS as though they were the same illness. They are not.

M. E. has a clearly defined disease process while CFS by definition has always been a syndrome. In light of this state of affairs, the Nightingale Research Foundation has updated its Definition of M.E. (effective January 2007). There have been many attempts to define CFS, some described in our textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. The Canadian Encyclopedia online also has a useful one.

The Complexities of Diagnosis

 

In 2003, Dr. Byron Hyde completed a chapter for L. A. Jason, P. A. Fennell and R. R. Taylor for their book Handbook of Chronic Fatigue Syndrome, John Wiley and Sons Inc., Hoboken N.J., titled “The Complexities of Diagnosis”^{1 (pdf format)}, Chapter 3. This chapter includes the following definition of CFS:

“The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state where the one essential characteristic of M.E. is acquired Central Nervous System (CNS) dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of the CDC, Oxford, Australian and Canadian CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable. Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say: “you have CFS and nothing can be done about it”. The CFS definitions have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.”

Definition Essentials

 

Some of the definition essentials required to accurately diagnose either M.E. or CFS, or any chronically ill patients group, include:

- A working case clinical definition must be short, clear and testable.

- Patients and their illness or illnesses must be part of an integrated system. Neither the patients’ patho-physiology nor their illness can be understood without a concise knowledge of their integrated pathophysiological systems.

- A statistically significant group of patients who have M.E. and CFS type illnesses must be subjected to a complete personal and family history to map the genetic and historical causes of their illnesses.

- Accordingly, the patient’s illness can only be understood if a complete total body mapping is performed on all systems and organs. The mammalian and animal bodies are an integrated physiological mechanism and when one major system change occurs, many physiological systems are liable to shift.

- In the past it has been facile to pose psychiatric diagnoses on M.E. and CFS patients since psychiatric diagnoses cannot be subjected to scientific examination. Psychiatrists rarely actually examine patients and almost never do an integrated patho-physiological patient investigation of the patient’s organs and systems. Nor have most psychiatrists been of any help in diagnosing M.E. and CFS patients except to the insurance industry. In the more than 70 years since the first major M.E. and CFS epidemic struck the Los Angeles County General Hospital in 1934, no psychiatric treatment has proven significantly effective in treating the M.E. and CFS group of patients and restoring them to health. This is understandable since neither represents a psychiatric disorder.

- Effective treatment of the M.E. and CFS group of patients depends upon precisely defining the organ and system pathologies and learning how to treat these patho-physiological conditions.

- M.E. and the CFS group of illnesses are chronic illnesses. For too long physicians have been considering chronic diseases and chronically ill patients as they would acute short-term illnesses. We believe this is an error and we direct those interested to our chapter on diagnosis. Relatively young chronically ill patients, often do not have a disease process, they often have many disease processes.

 

 

9. Official & Highly Controversial UK ‘CFS/ME’ Guidelines:

FOR FOUR HIGHLY QUESTIONABLE & CONTROVERSIAL OFFICIAL UK ‘CFS/ME’ SETS OF GUIDELINE DOCUMENTATION SEE THE FOLLOWING:

 

NICE (National Institute for Health and Clinical Excellence) – ‘Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (or Encephalopathy)’ Diagnosis and Management guidelines at:

http://guidance.nice.org.uk/CG53

 

NHS (National Health Service) Plus: Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline

http://www.nhsplus.nhs.uk/providers/images/library/files/guidelines/CFS_guideline.pdf

http://www.nhsplus.nhs.uk/providers/clinicaleffectiveness-guidelines-evidencebased.asp

 

DWP (Department of Work & Pensions): What is Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)?

www.dwp.gov.uk/medical/med_conditions/major/cfs/

 

RCPHC (Royal College of Paediatrics and Child Health):

http://www.rcpch.ac.uk/doc.aspx?id_Resource=1480

http://www.rcpch.ac.uk/Research/ce/RCPCH-guidelines

 

10. Other Important UK Documents:

 

A report of the CFS/ME Working Group: Report to the Chief Medical Officer of an independent working group – UK Department of Health:

www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4064840

 

Report of the UK National Task Force on Chronic Fatigue Syndrome, Postviral Fatigue Syndrome and Myalgic Encephalomyelitis – 1994 - Report funded jointly by the Department of Health and the charity Westcare: now out of print but see pages 47ff of CORPORATE COLLUSION, by Professor Malcolm Hooper, Eileen Marshall & Margaret Williams, at:    www.meactionuk.org.uk/Corporate_Collusion_2.htm

 

Report of the Gibson Group on the Scientific Research into ME (GSRME), UK House of Commons Website:

www.erythos.com/gibsonenquiry/index.html