RACP Guidelines for CFS

Submission to the Royal Australasian College of Physicians CFS Clinical Guidelines Review Committee

Authors: Christine Hunter, Annette Leggo, Anne Gotsis and Maureen Stephenson

Subject: Clinical Practice Guidelines on Chronic Fatigue Syndrome

This submission is forwarded in terms of the most recent listings provided by the Review Committee's Project Officer. As the consumer group forwarding this submission uses ME/CFS in its literature, this term is used throughout this submission. A list of the compilers of this document and consumers supporting its submission is provided at the end of the document.

The submission has been prepared by reference to:

We trust that this submission will assist the Review Committee in reaching a balanced and informed view of the disease in all its aspects including chronicity and severity. We believe that a lack of incorporation of the issues raised in this submission within the Clinical Practice Guidelines will seriously exacerbate the current grave outlook for people with ME/CFS. Copyright 1997

Copies may be made of material from this submission without prior reference to the writers provided that:

CONTENTS

SUMMARY
1.0 INTRODUCTION
2.0 SPECTRUM AND PREVALENCE OF CHRONIC FATIGUE IN THE COMMUNITY
3.0 INVESTIGATION OF PEOPLE PRESENTING WITH CHRONIC FATIGUE
4.0 DIAGNOSTIC CRITERIA FOR ME/CFS
5.0 CLINICAL EVALUATION OF PEOPLE WITH ME/CFS
6.0 MANAGEMENT OF PEOPLE WITH ME/CFS
7.0 ROLE OF GENERAL PRACTIONERS, SPECIALISTS AND OTHER HEALTH PROFESSIONALS
8.0 NEEDS OF SPECIAL SUBGROUPS - CHILDREN AND ADOLESCENTS
9.0 COMORBIDITY
10.0 SUICIDE
11.0 ROLE OF COMMUNITY SERVICES
12.0 INCOME SECURITY - SOCIAL SECURITY AND OTHER ENTITLEMENTS
13.0 RESEARCH
14.0 RECOMMENDATIONS
15.0 CONSUMER PERSPECTIVES
16.0 ACKNOWLEDGMENTS
LIST OF SUBMITTERS
CASE STUDIES


Summary

Members of The Working Group have the medical responsibility to formulate M.E./C.F.S. Clinical Practice Guidelines which can withstand the scrutiny of review and outcomes-based assessment in the months and years ahead as research data grows and the natural course of the disease is recorded.
We assert that:
1. As stated by Assistant Secretary of Health, Dr Philip Lee, U.S. Chair of the Chronic Fatigue Syndrome Co-ordinating Committee (C.F.S.C.C.), 13 September 1996:

2. Medical ignorance compounds the serious impact of the disease for people with M.E./C.F.S.
3. Dismissive attitudes, gratuitous psychological and psychiatric interpretation and general lack of awareness and compassion for the situation of people with M.E./C.F.S. are unacceptable.
4. Prescriptive clinical management guidelines cannot be imposed when:

5. There is mounting evidence that:

6. Tasks demanding new memory are more sensitive to impaired central nervous system function than well practised tasks, which are least vulnerable. This impacts most seriously on education (the young) and specific occupations.
7. People with gradual onset who adapt to declining health are more vulnerable to misdiagnosis, e.g. depression, school phobia, anorexia nervosa.
8. Management of severely ill M.E./C.F.S. patients presents enormous difficulties and responsibilities - symptoms of intractable pain, paralysis, paresis, seizure, cardiac problems, incontinence, paralytic ileus and overwhelming infections. Such features are recognised by a few clinicians at "the coalface", but the medical community on the whole fails to recognise and address the problems of those most in need.
9. There is no long term monitoring and no register for the disease. Fatalities are always ascribed to the terminal event; the earlier M.E./C.F.S. diagnosis is ignored. We strongly question:
10. The continued use of the name "Chronic Fatigue Syndrome" which reflects a lack of sensitivity to the issues for consumers. Its use perpetuates trivialisation, invites ridicule and contempt and negates attempts to gain serious recognition. U.S. Senate moves to address these concerns are welcomed.
11. The interpretations of Wilson, Hickie, Lloyd et al., B.M.J. 19 March 1994, 308: 756 - 759 that a strong belief in the physical nature of the disease predicts poor outcome. We propose the above authors have merely demonstrated that those who hold the strongest conviction in the organic nature of the illness are the worst affected because the more severe the illness the stronger the conviction.
12. The interpretations of Hickie, Lloyd et al., Psychol. Med. 1995, 25: 925 - 935 that the subclass II group represent somatoform disorder because of the degree of severity and atypical bizarre symptoms, which include shortness of breath with minor activity, repeated fevers and sweats, and recurrent diarrhoea. Earlier, however, these same authors expressed concerns about such speculation in correspondence to B.J. of Psychiatry 1990, 157, p 1449 where they state 'this is at best a highly speculative hypothesis', reminding that such patients with no known disorder are often mislabelled by psychiatrists as somatisers until the actual nature of the disorder is later revealed. Dr A. Lloyd in Oct. 1996 at the C.F.S Conference, San Francisco, U.S. said when discussing this atypical symptom cluster group II 'we may be looking at the severe end of the disease'. The gravity of these issues is demonstrated by the fact that those severely affected and in desperate need can be inappropriately removed to state and psychiatric care. The viewpoint of patients with M.E./C.F.S. has been marginalised and often energetically opposed, yet the patients' experience of the disease provides the richest history.

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1.0 Introduction

"Truth scarce ever yet carried it by vote anywhere at its first appearance." - John Locke, 1632-1704

1.1 It is acknowledged that a review of ME/CFS within the medical arena is timely. The Review has the potential to improve the quality of care for ME/CFS patients by:

1.2 Wherever ignorance of ME/CFS manifests itself as prejudice, disbelief and even contempt, the outcomes of this review could have important consequences in relation to:

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2.0 Spectrum and Prevalence of Chronic Fatigue in the Community

"Fatigue is both a normal and a pathological feature of everyday life." - Byron M. Hyde, MD.

2.1 The blurring of a distinction between chronic fatigue and Chronic Fatigue Syndrome is confusing. Several questions arise:

2.2 The Review Committee is requested to address the problems resulting from the medical profession's reliance on the term "fatigue" in relation to ME/CFS for the following reasons:

2.3 The blurring of terminology raises further issues relevant to prevalence. The use of certain terms, e.g. chronic fatigue prolonged fatigue/neurasthenia syndromes prolonged fatigue states chronic fatigue syndrome can be interpreted as scientific imprecision or a deliberate confusion of terminology. Hickie et al., in a study funded by the National Health & Medical Research Council to study the prevalence and sociodemographics of CFS among patients visiting general practitioners, illustrate this problem ("Fatigue in Selected Primary Case Settings: Sociodemographic and Psychiatric Correlates" MJA 1996, 164, 585 - 588).
2.4 Understanding the term "chronic" is crucial to an understanding of the illness. Melvin Ramsay, FRCP, spoke of "alarming chronicity" in relation to the Royal Free Hospital outbreak.
2.5 It must be recognised that any statistics relating to the prevalence of ME/CFS in the community are merely subjective estimates, due to:

2.6 It is of concern to patient organisations worldwide that doctors report more recoveries than do patients.
2.7 As databases age, the average length of the illness increases. (Physicians' estimates, in many instances, increase according to their years in practice). Revisiting documented outbreaks decades ago reveals numbers of people who have never recovered.

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3.0 Investigation of People Presenting with Chronic Fatigue

"The problem with fatigue is that it is neither specific, definable nor scientifically measurable. Also taking fatigue as the flagship symptom of a CNS disease removes the urgency of the fact that the majority of ME/CFS symptoms are in effect CNS symptoms." - Byron M. Hyde M.D.
"My G.P. referred me to a neurologist to exclude a possible MS diagnosis. He examined my reflexes, breathing and balance for a few minutes and then told me to sit down and said quite seriously that I was not physically ill in any way and should be seeing a psychiatrist rather than a medical doctor. I feel disadvantaged dealing with people who do not believe that I am sick. Being in pain and profoundly fatigued means I am in no condition to stand up for myself." - Female with ME/CFS age 19.
3.1 Again, the lack of distinction between chronic fatigue and Chronic Fatigue Syndrome is of concern.
3.2 Doctors investigating a possible ME/CFS patient need guidelines which acknowledge:

4.0 Diagnostic Criteria for ME/CFS

"We shut our eyes to observations which do not agree with the conclusions we wish to reach. We close our eyes to bits of history which seem out of place, or to noises coming down our stethoscopes which are not included in the catalogue of official sounds we have been taught to recognise." - Dr. Richard Asher, doctor and writer, warned thirty years ago, B.M.J, 308, 19 March 1994.
"When my Mum suggested to the G.P. I could be referred to a doctor who was knowledgeable on CFS, he said if I went to a doctor who 'believed' in CFS, I would be diagnosed with it and if I went to a doctor who 'didn't believe' in CFS I wouldn't be diagnosed with it. It is difficult to hear someone describe the need to believe in an illness when you are suffering its effects every day" - Adolescent with ME/CFS

4.1 The most recognised symptom check lists for diagnostic criteria are as follows:
The Wallis/Behan Diagnostic Description*
Following an initial infectious process the child may demonstrate:

  1. Depression: This often occurred with weeping tendencies, and appeared early. Nearly all affected children are diagnosed first as hysterical, depression or "parental over-involvement."
  2. Loss of energy: This occurred in all but the mildest cases and frequently persisted.
  3. Retardation of thought process: Work involving abstract thought was difficult to perform in all with protracted illness or recurrences. Serial seven test was poorly performed, often with errors, often starting the test well and then getting bogged down.
  4. Impairment of thought process: This was a common feature, and the contents of papers or magazines read only a few minutes earlier could not be recollected.
  5. Impairment of memory: Recentl retention and recall: Items of work to be done or purchases to be made had to be listed as memorising proved unreliable.
  6. Disorders of sleep: Inversion of sleep rhythm was common with nightmares in children, often with hallucinations on waking.
  7. Behavior disorders: Temper tantrums were frequent in young children. In older children unsociability, lack of attention and effort on return to school was frequent. If behaviour was checked, children tended to weep. There is anxiety and clinging dependency, with a reluctance to attend school.
  8. Physical activities: There is lack of interest in playing games with other children. When forced to attend school and take part in physical exercises, this has been followed by disastrous deterioration in the clinical condition, with overwhelming exhaustion and weakness supervening.
  9. Weight loss: A significant amount of body weight may be lost early in the disease process.
  10. Profound weakness: The weakness may be so severe that the child is confined to a wheel chair.

*This list is combined from two separate publications - of A.L. Wallis and P.O. & W. Behan. Clinicians with broad experience regard the Wallis/Behan Diagnostic Description as an invaluable aid for diagnosing young people.
The Henderson and Shelokov Summary

  1. Fatigability, malaise, prodormal sore throat
  2. Muscle weakness, cramps, spasms and twitches
  3. Bursting headache, neck pain, eye pain
  4. Irritability, depression, lack of concentration, emotional instability, impaired mentation
  5. Visual problems, photophobia, diplopia
  6. Dizziness, nausea, cutaneous sensory changes
  7. Urinary, mentrual difficulties

From the New England Journal of Medicine - 1959

1988 CDC Criteria for the Chronic Fatigue Syndrome:
Major Criteria

  1. New onset of debilitating fatigue that does not resolve with bedrest and that impairs average daily activity below 50% of premorbid levels for at least 6 months.
  2. Exclusion of conditions that may cause fatigue, including malignancy, autoimmune and chronic inflammatory disease; infections; neuromuscular or endocrine disease; specific psychiatric disorders; chronic use, abuse or side effects of prescription or illicit drugs; and exposure to toxins.

Minor Symptom Criteria
To fullfill a symptom criterion, a symptom must have begun at or after the time of onset of increased fatigability and must have persisted or recurred over at least 6 months.

  1. Mild fever - oral temperature between 37.5 degrees C and 38.6 degrees C - or chills.
  2. Sore throat.
  3. Painful axillary, anterior, or posterior cervical nodes.
  4. Unexplained generalized muscle weakness.
  5. Muscle discomfort or myalgia.
  6. Prolonged (24 hours or more) generalized fatigue after levels of exercise that would have been easily tolerated in the premorbid state.
  7. New of different generalised headaches.
  8. Migratory arthralgia without joint swelling or redness.
  9. Neuropsychological problems (including photophobia, transient visual scotomata, forgetfulness, excessive irritability, confusion, difficulty thinking, inability to concentrate, and depression.)
  10. Sleep disturbance (hypersomnia or insomnia).
  11. Onset of the main symptom complex over hours to a few days.

Physical Examination
Criteria Physical criteria must be documented by a physician on at least two occasions at least 1 month apart.

  1. Low-grade fever - oral temperature of 37.6 degrees C to 38.6 degrees C or rectal temperature of 37.8 degrees C to 38.8 degrees C.
  2. Nonexudative pharyngitis.
  3. Palpable or tender anterior or posterior cervical or axillary lymph nodes.

From Annals of Internal Medicine 1995; 123; 81-88. Evaluation and classification of unexplained chronic fatigue. From Annals of Internal Medicine 1994; 121; 953 - 959. ALT = alanine aminotransferase; BUN = blood urea nitrogen; CBC = complete blood counts; ESR = erythrocyte sedimentation rate; PO4 = phosphorus; TSH - thyroid stimulating hormone; UA = urinalysis.

I. Clinically evaluate cases of prolonged or chronic fatigue by:
A. History and physical examination;
B. Mental status examination (abnormalities require appropriate psychiatric, psychologic, or neurologic examination);
C. Tests (abnormal results that strongly suggest an exclusionary condition must be reported):

  1. Screening lab tests: CBC, ESR ALT, total protein, albumin alkaline phosphaiase, Ca, PO4, BUN, electrolytes, creatinine, TSH, and UA.
  2. Additional tests as clinically indicated to exclude other diagnoses. Exclude case if another cause for chronic fatigue is found.

II. Classify case as either chronic fatigue syndrome or idiopathic chronic fatigue if fatigue persists or relapses for 6 months or more.
A. Classify as chronic fatigue syndrome if: a. Criteria for severity of fatigue are met, and b. Four or more of the following symptoms are concurrently present for 6 or more months:

  1. impaired memory or concentration.
  2. sore throat.
  3. tender cervical or axillary lymph nodes.
  4. muscle pain.
  5. multi-joint pain.
  6. new headaches.
  7. unrefreshing sleep, and
  8. post-exertion malaise

B. Classify as idiopathic chronic fatigue if fatigue severity or symptom criteria for chronic fatigue syndrome are not met.

III. Subgroup research cases by the presence or absence of the following essential parameters:
A. Comorbid conditions (psychiatric conditions must be documented by use of an instrument);
B. Current level of fatigue (measured by a scale);
C. Duration of fatigue;
D. Current level of physical function (measured by an instrument).
Subgroup research cases further as needed by optional parameters such as epidemiologic or laboratory features of interest.
4.2 The existence of varied diagnostic criteria:

4.3 Careful consideration must be given to the terminology used in the preparation of diagnostic lists for doctors, as many criteria are ill defined, e.g.

"My cognitive difficulties were frightening and confusing and I often feared I was going crazy. Ordinarily an intelligent and avid learner, thinking was suddenly clouded and confused. I forgot things extremely easily. I mixed up words and I couldn't think of phrases I wanted to use; my concentration span was extremely short and my mathematical ability almost disappeared." - Female with ME/CFS (18 years)

"The pain and exhaustion of the walk from my bed to the bathroom would take half an hour to subside." - B.M.J. 30, 19 March 1994, p 797 - Claire Fleming, G.P.

4.4 Doctors need to be aware that:

"My illness began so mildly and innocently more than ten years ago - as the years have passed I've developed more and more complications and faced several life threatening episodes. I've been hospitalised five times for a total of over 13 weeks and now have chronic gastroparesis and paralytic ileus. I have been nil by mouth for 18 months; I've had three PICC lines lost due to rejection infection and phlebitis. I've had three central lines." - Female with ME/CFS.

4.5 Criteria lists could be strengthened by the inclusion of other symptoms. This requires an open-minded approach, given the lack of conclusive research findings at this point in time, e.g. in "Examination of the Working Case Definition of Chronic Fatigue Syndrome", American Journal of Medicine, January 1996, 100, 56 - 64, Komaroff et al. argued for the inclusion of anorexia and nausea and restoration of infectious type symptoms of fever, chills, sore throat and painful glands, to strengthen the CDC case definition of ME/CFS. Komaroff et al. also found additional minor criteria which were strong discriminators of ME/CFS.

Table II
Minor Criteria Symptoms in Patients With Chronic Fatigue Versus Healthy Controls and Disease Comparison Groups

Symptom

Chronic Fatigue

Healthy Controls

Multiple Sclerosis

Major Depression

(n=281) (n=203) (n=25) (n=19)

Fever/Chills

43%

0%*

4%* 10%**
Sore throat 64% 8%* 8%* 11%*
Swollen neck or arm glands 65% 4%* 8%* 11%*
Swollen neck glands 60% 4%* 8%* 11%*
Swollen arm glands 32% 0%* 8%* 0%*
Muscle weakness 68% 2%* 71% 28%*
Myalgias 89% 31%* 68%** 68%**
Postexertional malaise 79% 4%* 52%** 19%*
Headaches 59% 7%* 28%* 22%*
Arthralgias 73% 17%* 68% 50%**
Neuropsychiatric symptoms^ 97% 6%* 88% 100%
Difficulty concentrating 83% 1%* 52%* 79%
Forgetfulness 71% 2%* 52% 42%**
Difficulty thinking 31% 1%* 48% 68%*
Blurred vision 50% 1% 60% 21%**
Photophobia 58% 3%* 68% 42%
Irritability 70% 2%* 44%** 74%
Depression 65% 1%* 20%* 95%
Sleep Disturbance 98% 9%* 72% 95%
Need to nap each day 67% 1%* 48% 53%
Difficulty falling asleep 53% 4%* 20% 26%
Difficulty staying asleep 64% 4%* 40% 74%
Awakening unrested 89% 5%* 56%* 74%
Early morning awakening 19% 5%* 24% 58%*
Acute onset 84% NA 24%* 0%*


* P < 0.001 when compared to patients with chronic fatigue.
** P < 0.01 when compared to patients with chronic fatigue.
^ Neuropsychiatric symptoms and sleep disturbances are each treated as single symptoms by the CDC case definition. In this table, each of these symptoms is broken down into a group of more specific symptoms. The percentage of patients reporting at least one of the more specific symptoms listed is shown in the rows entitled Neuropsychiatric symptoms and sleep disturbance. The frequency with which each of the more specific symptoms was reported is also displayed.
NA= Not applicable.

Table III
Non-CDC Symptoms in Patients with Chronic Fatigue Versus Healthy Controls and Disease Comparison Groups

Symptom

Chronic Fatigue

Healthy Controls

Multiple Sclerosis

Major Depression

(n=281)

(n=203)

(n=25)

(n=19)

Respiratory symptoms

Chronic cough

28%

2%*

4%**

16%

Earaches

41%

4%*

16%**

16%

Ringing in ears

21%

1%*

16%

21%

Sinus infections

29%

4%*

4%**

11%

Shortness of breath

53%

1%*

16%**

47%

Gastrointestinal symptoms

Anorexia^

35%

2%*

4%*

5%**

Upper abdominal pain^

38%

2%*

8%*

37%

Lower abdominal pain^

20%

4%*

0%**

21%

Diarrhea

31%

2%*

24%

26%

Bloating

38%

2%*

8%*

47%

Nausea

58%

3%*

8%*

16%**

Neurologic symptoms

Unsteadiness when upright^

26%

1%*

52%**

21%

Dizzyness

generally^

27%

4%*

28%

Dizzy moving head

49%

2%*

36%

26%

Dizzyness after standing

28%

5%*

36%

26%

Alcohol intolerance

60%

2%*

40%

21%**

Skin sensations

40%

1%*

40%

16%

Tingling sensations

55%

2%*

80%

26%**

Rheumatologic symptoms

Puffy face^

33%

1%

8%**

16%

Jaw pain^

34%

5%*

12%

32%

Dry eyes

38%

1%*

12%**

21%

Dry mouth

49%

3%*

16%*

37%

Morning stiffness

57%

5%*

24%**

37%

Gelling

57%

7%*

36%

53%

Cardiac symptoms

Chest pain^

37%

0%*

8%**

16%

Rapid heartbeat^

43%

3%*

4%*

16%

Miscellaneous symptoms

Dysuria^

8%

1%**

8%

5%

Genital herpes^

4%

0%

4%

11%

herpes zoster^

4%

0%

0%

0%

oral herpes^

24%

3%*

12%

16%

night sweats

50%

1%*

24%**

26%*

* p < 0.001 when compared to patients with chronic fatigue.
** P < 0.01 when compared to patients with chronic fatigue.
^ Data obtained from second subset of healthy control subjects


4.6 Komaroff's study (4.5 above) is important in its distinction between ME/CFS, multiple sclerosis and depression, namely:

"There are time lags between occurrence recognition, finding a label, acceptance and scientifically proven treatment. At times like this my profession rarely covers itself in glory. There is tragedy associated with the delay between a 'new' disease arising and professional acceptance. CFS wears the delays in relative silence." - Prof. Malcolm Fisher, 29 April 1993.
"It's one of the loneliest illnesses in the world because we don't have anything to show for it." - Lyn Drysdale, 1993 Order of Australia
"When the weight loss I had been complaining about for months could no longer be ignored by my doctor he asked, 'Do you engage in exercise that could be considered excessive?' I replied 'Does washing one's hair sitting down count?'" - Adolescent with ME/CFS.
4.7 The injustice of misdiagnosis occurs in labelling ME/CFS patients with:


4.8 Thus, it is essential that: guidelines for doctors emphasise the need for an open-mind and acceptance of the complexities and idiosyncratic nature of ME/CFS when diagnosing patients.

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5.0 Clinical Evaluation of People with ME/CFS

Absence of evidence is not evidence of absence

5.1 As indicated earlier, the challenges confronting doctors when assessing ME/CFS patients are acknowledged. Nevertheless, a cynical or disbelieving approach to ME/CFS patients is to be avoided.
5.2 It cannot be emphasised too strongly that ME/CFS is a valid medical condition, despite the often normal physical examinations and for many, essentially normal routine laboratory values. Refer to "Clinical Laboratory Test Findings in Patients with Chronic Fatigue Syndrome" in American Journal of Internal Medicine, January 9, 1995, 155: 97-103. Each of these laboratory findings supports the diagnosis of ME/CFS, yet each lacks specificity to be a diagnostic test.
5.3 The following list demonstrates the profound symptom complex of ME/CFS. The failure to include severe symptom descriptions in the medical literature most seriously impacts on the recognition and management of the severely ill. Studying those so affected may give a picture of a homogeneous group whose illness course has been one of deterioration. The meticulous documentation by Melvin Ramsay in his Thesis of the Royal Free Infectious Diseases Hospital outbreak, and by others such as Byron Hyde MD, author of The Scientific and Clinical Basis of ME/CFS, and John Richardson, MB, B.S. U.K., validate our inclusion of the symptoms experienced by those at the severe end of the disease spectrum.
Signs & Symptoms:
Neurological: impaired memory, impaired mental processing, discalculia, loss of word recall, irritability, emotional lability, depression/grief, abrupt episodes of anxiety/panic, sensory storms, foggy brain, headache of new type, headache with constant pressure/burning, light and noise sensitivity, neck stiffness, facial puffiness, disturbed gait, disturbed balance, paresthesias, burning and migratory myoclonic jerks, atypical seizures, grand mal akinetic episodes, paresis, paralysis, spasticity, disturbed sleep patterns, hypersomnia, insomnia, nightmares and vivid dreams .
Cardiac: palpitations, shortness of breath, chest pain, arhythmias, mitral valve prolapse.
G.I.T.: nausea, anorexia, diarrhoea, constipation, heart burn, faecal breath, abdominal pain, diffuse abdominal tenderness/bloating, osophagitis/ulceration, haemorrhagic gastritis/ulceration dysphagia, laryngeal oedema, gastroparesis, paralytic ileus, reverse peristalsis with impacted vomitus.
Urinary Tract: thirst frequency/dysuria nocturia, burning, loss of bladder/bowel control.
Respiratory: cough, sinusitis, shortness of breath, "air hunger".
Mouth: ulcers, red swollen tongue, loss of tongue surface, sore throat, pharyngeal ulcers.
Musculo-skeletal: tenderpoints, temporal mandibular pain, muscle fatigue after minor activity, myalgias, arthralgias, fasciculations, generalised exquisite tenderness.
Eye: red painful eyes, dry eyes, disturbed vision, loss of vision/episodic or prolonged.
Skin: pallor/flushing, petechae, ulcerations, faecal, sweat/excessive sweating, orange scaling, scalp, cold extremities.
Hair: brittle/red tint, hair loss.
Ear: tinnitus, earaches.
Other: impaired infection response, disturbed temperature regulation, mild fever/ subnormal temperature, night sweats/chills, low blood pressure, dizziness/fainting, lips and extremities blue at times painful/tender, glands neck axilla, positive Romberg test, abnormal reflexes, marked weight gain or loss, menstrual disturbances, new food allergies, alcohol intolerance, chemical sensitivities, reactions to fumes, drug reactions which are idiosyncratic - out of all proportion to dosage.

"Among the most devastating of all symptoms are emotional changes in combination with fatigue and neurological symptoms that create an inability to cope. This is particularly aggravated when medical consultation fails to recognise that the symptoms have an organic cause." - David S. Bell MD, FAAP Harvard.
"Perhaps the one overriding cognitive dysfunction observed in almost all ME/CFS patients irrespective of their prior mathematical abilities, is the development of dyscalculia." - Byron Hyde MD, "The Clinical and Scientific Basis of ME/CFS" p.45.
"Of all the things ME has taken, I miss my brain the most." - Female with ME/CFS.
"I'd have to stand up for half an hour after each meal in an attempt to assist the food on it's way down." Female (22 years) with ME/CFS.
"The relapse wasn't heading anywhere nice but I had honestly forgotten how bad CFS can get, there are times when you can barely live, breathe, let alone work. And that feeling can go on for days, weeks, months ..... very scary." - Female with ME/CFS.
5.4 Severe Symptoms: severely limited cognitive function, intractable headache, often associated with facial swelling, particularly around eyes, atypical seizures, grand mal paresis, paralysis, spasticity, dysphagia, gastroparesis, paralytic ileus, reverse (retro) peristalsis, severe angina, marked weight loss or gain (up to 40% of body weight).
"In her updated book on ME, Dr Anne Macintyre, herself a sufferer, describes the tragedy of misdiagnosis of children. In one case, Ean, who fell ill at the age of 11 in 1986, lost his voice and was virtually paralysed. Two years later, without warning, he was removed from his parents' home to be placed in the care of a psychiatrist and paediatrician on the Isle of Man, where the family lives. Despite a diagnosis of ME by other specialists, he was said to suffer from "school phobia and over-protective parents". At one point he was "let go" in the hospital's remedial pool in the belief that he would put out his arms to save himself. After four months a terrified Ean was released, his condition unchanged. Following support from other doctors and his family, a variety of orthodox and alternative treatments including high doses of evening primrose oil and gentle physiotherapy, he has made a full recovery. The family has also won a long legal battle for compensation for his removal." Daily Telegraph, U.K. 1992.
"A continual headache characterised by a sensation of severe pressure combined with a burning heat which feels as though my brain is swollen and on fire. Bursting" - Female 16.
When severe symptoms gain recognition patients are often rediagnosed to accommodate those symptoms and are lost to ME/CFS statistics. In numerous cases however, no alternative diagnosis is forthcoming.
5.5 There are strong imperatives to implement strategies to improve diagnostic performance:

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6.0 Management of People with ME/CFS

"Skilful management of patients with CFS is one of the more difficult tasks a physician may be called upon to perform. It is important to project a compassionate, non-judgemental attitude." - R.H. Loblay MB, BS, 1994.
"With a disease lacking a diagnostic test everyone's an expert .... Everybody knows someone's niece or cousin twice removed who went to see Dr. so and so and now she's climbing mountains. Each new regime might be the one to set things moving in the right direction. They stretch from the sublime to the ridiculous but you must try them all lest "don't you ever want to recover?" These treatments aren't always benign, leaving you physically worse off than when you started, not to mention emotionally and financially." - Female with ME/CFS.
"The temptation to try to ignore the illness and push oneself just that bit further is strong, persuasive. Resting in the early stages feels like 'giving in'!" - Male with ME/CFS.
6.1 ME/CFS patients are highly motivated to manage their illness constructively and to regain their health.
6.2 In the absence of known cause and proven treatments, management strategies must be FLEXIBLE and recognise that:


6.3 Given the complexities of ME/CFS, specific management issues emerge:
"Managing ME/CFS is like operating a bank account. The higher the balance, the faster interest accrues. Regular withdrawals lessen the amount earned and larger withdrawals incur overdraft charges. I have to learn to avoid overdrawing my energy account and to accept I cannot control my interest rate." - Claire Fleming, BMJ, 19 March 1994.

Dr Franklin noted that doctors find it difficult to make the diagnosis of ME and acknowledged that in his own training, he had been taught nothing about it, so when he first encountered it, his immediate opinion was that it was an hysterical disorder, but further assessment by child psychiatrists showed that such children are different from those normally referred for psychiatric help: they are not depressed; they are not school-phobic; if they have been out of activity for a long time, they are weak, but the characteristic feature is not weakness, it is fatigue, which is disabling."
"The quality of the fatigue is incapacitating. Children are pale and exhausted after doing very little; they feel ill all over; they are dizzy; there are changes in appetite and body temperature regulation; there is often photophobia and hyperacusis, which is unusual and distressing in children, whose normal world is noisy. There may be episodes of shaking: Dr Leslie Findley (consultant neurologist in Essex) has found that EEGs are altered, but this is not epilepsy. There may be hallucinations, which are not auditory but visual, and there may be the more difficult symptoms of lack of swallowing and lack of voice, which are probably due to muscular involvement." - Alan Franklin, FRCP. BCH. Postgraduate Meeting, U.K. Nov. 95.
"Health professionals find it easier to label patients with depression, rather than recognise and acknowledge the natural grief reaction to such profound loss - loss of health, normal family life, education, career, plans for future, self esteem etc. You cannot dispense antigrief pills". - Patient (age 46) with ME/CFS.
"Was this what I had become? A pathetic shell of what I used to be and unable to cope with the most ordinary elements of social life". - Male (age 50) with ME/CFS.
"What social life? Planning is impossible with a disease as fickle and changeable as CFS." - Female with ME/CFS.
"Acceptance conjured up thoughts of liking my situation. I don't. Acceptance is learning habits to manage your chronic illness - a process of trial and error that can take you years!" - Male with ME/CFS.
6.5 "We need now to focus more specifically on all those who may encounter children and young people with ME/CFS in order that adequate provision of care help and education can be appropriately given to them; also that they may be PROTECTED FROM FURTHER DAMAGE by MISGUIDED ENTHUSIASM aimed at premature restoration of function before the body has had time to heal." - Alan Franklin, FRCP, BCH, Paediatrician, ME/CFS U.K. Task Force.
"The headache from hell returned (on top of the normal incessant headache). I felt so much like passing out and throwing up at the same time. Any amount of light, noise or movement made it worse and sent waves of pain through me - such agony. Even 150mg IM pethedine and two panadeine fortes in two hours were not enough to secure its demise. The nurses still insist on fluorescent lights overhead and my door and blinds open. They want me to have a shower and don't understand why I don't touch my food." - Young adult with ME/CFS.
"Here they treat your illness as 'aberrant behaviour' and attempt to modify it. They achieve this by drawing up a proposed schedule of activities - attending hospital school, no pain relief, psychotherapy, no lying in bed for more than five minutes, walking a set distance each day. Failure to comply results in 'punishments' - no T.V., no phone use, withdrawal of parent's visiting rights, even isolation from other children on the wards." - Adolescent with ME/CFS.
"In hospital Kate kept fainting because she was too ill to be out of bed and 'they' decided she was hysterical and let her fall and hit her head. She has been too frightened to go to a doctor ever since." - Parent of a child with ME/CFS.
6.6 The use of behaviour modification programs as a management strategy for ME/CFS is strongly opposed by this group.
6.7 The continued recommendation of high dose intravenous gamma globulin (IVGG) is of serious concern. While it is recognised that some patients gained benefit, the serious side effects for a subgroup of patients have not been monitored or documented. With published evidence that high dose IVGG can cause aseptic meningitis, the reactions and long term history of this subgroup of patients should be thoroughly documented. Documentation may assist to identify a homogeneous subgroup and, more importantly, indicate those for whom such treatment is dangerous and, therefore, contraindicated. Refer: Schiavattoc et al "Haematological" 1993, November-December, 78 (6 Supplement), 35-40. American Journal of Internal Medicine 1994 August 15, 121 (4), 259-262.
6.8 "I was aware of the dangers of bed rest and several articles convincingly explained how the symptoms of the condition resulted from inactivity. Yet listening to my body told me otherwise. Why should grappling with paperwork cause postural hypotension, or walking upstairs result in expressive dysphasia? When my level of physical, mental and emotional activity exceeded my limits all my symptoms increased. When I rested I improved." - Claire Fleming MD, BMJ, 308, p.797.
All doctors, health professionals and others assisting people with ME/CFS must understand the primary and legitimate need for rest and activity modification. It is the patient experience that both mental and physical exertion can exacerbate all ME/CFS symptoms (not merely the fatigue). There is a common misunderstanding of a vicious cycle - theory of muscle weakness, unfitness, deconditioning, which fails to explain or acknowledge abrupt fluctuations of ability. It is essential that clinicians recognise that bed rest is not an option chosen by the patient, but imposed by the condition. Appropriate principles for ME/CFS management include:


6.9 There are several other important aspects of management to be considered, including:
* pain management
"The approach to pain relief in certain very ill patients with severe pain can easily be the most challenging problem." - Paul Cheney MD, Ph. D. CFIDS Chronicle Spring '95.
"Those that do not feel pain seldom think that it is felt." - Noted by Dr. Johnson, 18th Century.
"The patients with thick charts are all too often prey to the physicians' innuendos that they are neurotic and that their neuroses are the cause of the pain. All too often the diagnosis of neurosis as the cause of pain hides our profound ignorance of many aspects of pain mechanisms." "The Psychology of Pain" - from The Challenge of Pain, Penguin 1982.
"Failure to address pain adequately can lead to high-risk of suicide and can greatly exacerbate the underlying symptoms." - Paul Cheney M.D. Ph.D.
"I had my appendix out and was given morphine after the operation. I thought the 'headache' had disappeared overnight. As they reduced the dosage it came back with a vengeance. I cried but that made it worse. It seems decapitation is my only solution." - Male with ME/CFS.
"He was also suffering from severe and persistent headaches. These increasingly affected his ability to think, concentrate and of course, work. For Martin this was intolerable. He became more and more depressed and on the 11th of March he took his own life." - Interaction, U.K.
"The worst is always the headache. It's vicious and driving me to distraction. My brain feels so hot and constantly swollen. My face is swollen and friends don't recognise me. It feels like a recurrence of measles. The only thing that has ever completely relieved the headache is morphine." - Female with ME/CFS. There has been scant recognition of the need to address pain associated with ME/CFS: headache, abdominal pain, myalgia, arthralgia, G.I.T./oral, pharyngeal, oesophageal, gastric ulceration.

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7.0 Role of General Practitioners, Specialists and other Health Professionals

"CFS is a sufficient indignity by itself; do not compound it. It takes considerable time and infinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex. Resist the temptation of hurried, superficial evaluation. This is no illness for cookbook doctors. It is a disease for medical intellectuals with supple and open minds." - Thomas English MD. JAMA, Feb. 27 1991, 265, No.8.
"It is important to believe the child and listen to their views. Failure to do so can produce an angry, confused, uncooperative child who loses all trust in the medical and school authorities." - Alan Franklin, FRCP. BCH, Consultant Paediatrician. - ME/CFS U.K. Task Force, 1993.
7.1 Further to issues outlined in Section 6, a team approach to the management of ME/CFS patients appears to be the most effective. The GP has a vital role in coordinating care, including specialists and community agencies.
7.2
Despite limitations in being able to help, it is essential to recognise the value to the patient of honest, non-judgemental compassionate care.
7.3 Doctors and health professionals have a responsibility to:

"The G.P. told me it was just my perception. I was actually one hundred percent well and didn't realise it. The fact that I couldn't stand to shave, almost fainted with any exertion and my blood pressure was 80/50 didn't bother him."
"Our doctors and family knew that we were sick but when no easy answer could be found they covered their ignorance by blaming us, telling us we were crazy." - Heather Frese, speaking on behalf of young adults to CFS Coordinating Committee, US, April 1996.
"My doctor is a source not only of information and treatments but also support: he is happy to hear about new research into CFS, good books on the subject and other people's experience of particular treatments. It is always heartening to see him and experience his enthusiasm to find a medicine or supplement that will help me."
"I've had to use a wheel chair for the last five years and we just now have got a stair lift so I can get to the rest of the house. Our doctor's relentless search for information and treatments keeps us all encouraged." - Quotes from patients with ME/CFS.

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8.0 Needs of Special Subgroups - Children and Adolescents

"CFS is a devastating illness in children; even worse than in adults. Young children with severe diseases such as leukemia are able to come to terms with their illness because it is clearly defined. It is rare that CFS is defined for the child. With the constant denial imposed upon the child and the assumption that the symptoms are imaginary, only confusion can result, a confusion that may colour judgement and settings for the next 50 years. The child NEVER understands the concept of normal health." - Dr David Bell, Harvard Paediatrician, author of "A Doctors Guide to CFS"
"Their formative years are ravaged by illness. Any academic progress is achieved through effort and sacrifice unimaginable in most teenagers. For those ill in earliest years, good health was just an idea, an elusive abstraction that had been denied them, something difficult to describe having long ago lost their memory of it." - Hillary Johnson, Osler's Web 1996.
"Having diagnosed ME, how do we treat it and how is it managed? Dr Franklin then gave some tragic examples of how cases should not be managed, telling how a child with ME was left alone in hospital on the premise that "hysterics" never harm themselves; the girl fell out of bed; she cut her lip and was badly bruised; she also fractured her skull, yet she was still deemed hysterical by the staff. After about a year, this girl recovered sufficiently to be able to return to school, but there were horrendous residual psychological problems." - Alan Franklin, FRCP BCH, from Post. Grad. Address, Coventry 1995.
"But what we can't lose sight of is that these children are sick - often too sick to care who is around - and certainly too sick to cope with a school environment, which is possibly one of the noisiest and most physically active, user unfriendly environments you could find, particularly at break time, which is presumably when socialising would take place ... We must take the pressure off and give them and their parents 'permission' to put school on hold, until they are ready to return." - Amanda Hoy, Social Worker, Address to Canberra ME/CFS, Symposium 1991.
"You can always make up for missed school work but you can't make up for a lost childhood." - School Principal (retired).
"If you disbelieve a mother you do so at your peril and the peril of their child. They're very acute observers." - Professor Beveredge, SMH, July, 1994.
"It was only when I began to improve that I realised it was not normal for my legs to shake and tremble and it was not normal to feel nauseated after ten mouthfuls of food, nor was it normal to wake in the morning so unrested that I may as well never have been to sleep at all." - Adolescent with ME/CFS.
8.1 Children and adolescents with ME/CFS are a particularly vulnerable group. There are only a few studies on this group. David Bell MD. And Alan Franklin, FRCP have provided some sound advice for parents, doctors and teachers. The lack of research into this group is surprising, given the large number of young ME/CFS patients whose condition is deteriorating.
8.2 In addressing the needs and rights of children and adolescents with ME/CFS there are certain specifics to be acknowledged, including recognition of:

Dr Alan Franklin, a member of the ME/CFS UK Task Force, has described the consequences of disbelief and emotional, verbal and even physical abuse by medical and health professionals. Franklin highlighted the fact that impaired/deteriorating central nervous system functions are more apparent when new learning in required.

8.3 Children and adolescents have specific needs and rights which are not always respected in the busy environment of a doctor's surgery, including:

"It's hard being tired, trying to assert your individuality while so terribly dependent on people for practical care. Of prime importance to adolescents is the need to feel accepted, normal, 'one of the pack'. This is nigh impossible to achieve when you mysteriously disappear everyday after recess, receive extensions on assignments and have to decline invitations to most parties, sporting activities!!"
"As symptoms continued and normal life faded away, the Infectious Diseases specialist mentioned high Epstein Barr antibodies and insisted that I had a viral infection - he could not name or clarify it further. The psychologist told my parents she found it hard to believe that neither set of grandparents or my parents were divorced, that I was an A student and active in many areas. She labelled me as 'school phobic' - a term I couldn't rationalise while I was too sick in the summer to enjoy our holiday at the beach."
A young boy labelled as school phobic protested: "But I want to go to school Mum, so I can hate it like everybody else."
"All the normal adolescent turmoil is experienced and perhaps magnified without resolution, for how do we assert our individuality if not through experiencing life and interacting with a whole variety of human beings."
"When I was young I had the whole first half of my life planned out: do a university degree, live an independent existence in my own flat, get a good job I enjoyed. Being greatly self reliant was a definite goal... Now this feeling leads me to not wanting any more birthdays until I recover - every birthday is a milestone of what hasn't happened; what I haven't achieved; how far behind I am in comparison with others my age."
Quotes from young people with ME/CFS.
Dr David Bell who has worked closely with children with ME/CFS states "these children face an additional burden caused by the disruption of normal developmental processes. The tragedy of this developmental disability is that it is imposed on the child by the physicians, well-meaning parents, and the community, all of whom are requiring proof of illness".

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9.0 Comorbidity

"Expert opinion does not always reflect the state of current medical knowledge" - Altman et al., 1992 for NH&HRC Clinical Practice Guidelines, 1995. Psychological Assessment By Robert Loblay MB, BS, 1994.
Assessment should take into account the following:


"Inexcusably, the lack of results with tests led some of my colleagues to say: 'We can't find anything wrong. Therefore, you're neurotic!' instead of understanding that they (the researchers) might be ignorant - there could be an aspect of pathology they haven't understood." - Professor J. Dwyer, 12 March 1996.
Professor Behan dismisses any idea ME/CFS is controlled by the mind - "no guilt, no delusions, no decrease in interest in projects or sex." He sees dangers in following the psychological approach. "It's absolutely repressive to suggest CFS is in the heads of patients. I have seen patients commit suicide or have been otherwise destroyed because some professor has diagnosed them as having a psychiatric illness." - Peter Behan, Professor of Neurology, University of Glasgow. New Scientist, 14 May 1994.
"I wondered if my disease had a psychosomatic basis and decided to try psychotherapy and rummaged through the cupboards of my psyche. It proved to be a challenging and rewarding experience but not the ANSWER to my predicament." - Claire Fleming M.D., B.M.J.
"Since I became ill I have developed agrophobia - anxiety disorders are known to be a symptom of ME/CFS. This further restricts the activities I can cope with because being anxious uses up a large amount of emotional energy I don't have. My doctor and psychologist agree it is linked into the severity - when I have a good day with the illness, the anxiety abates along with all the other symptoms."
"Oh yes! The benefits of the sick role - how could I relinquish these for restored health and dare I say it, NORMALITY"
"You can only be doubted, disbelieved and treated sceptically for so long before you turn the doubt inwards."
"Not being a doctor or psychologist, I don't know where 'sadness' stops and 'depression' begins but the episodes of profound sadness and anxiety I have experienced are something anyone who has had a chronic and or serious illness can empathise with."
"I have a recipe for madness. Take one child age 9 or so; happy, trusting, healthy - bestow upon him one incapacitating, poorly defined and underestimated illness. Add several years of prolonged social isolation, continual pain and debility. Then mix with countless encounters with disbelief." Quotes from patients with ME/CFS.
In an address in 1995, Dr. Alan Franklin stressed that he hoped we have all now abandoned the tendency to suggest that if no physical cause can be found for an illness, then it must be psychological; he reminded us that in order to make a psychological diagnosis, there must be positive psychological factors. He said that unfortunately, the papers by McEvedy and Beard (two psychiatrists from the 1970s who were looking for a vehicle for a Ph.D. thesis and who chose the 1955 Royal Free outbreak of ME for their purpose; without seeing a single patient for follow-up and relying only on their own interpretation of the case notes, ie. over-ruling the clinical findings of the doctors who were actually involved in the outbreak), concluded that the disease was nothing more than an outbreak of hysteria. This, together with the work of some more recent psychiatrists, has played up the idea that psychiatric factors are predominant, whereas they certainly do not account for the origin of the disease. Alan Franklin, FRCP. BCH. ME. Task Force, U.K. Post. Grad. Address, Coventry 1995.

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10.0 Suicide

"I want you to sense what this disease is and what this disease can do, not to human cells but to the human spirit ..... The person who has been ill for six months may be no less in despair than the victim of a decade ..... I have never known a person with full blown CFS who has not considered suicide at some point, or points, in the course of his or her illness". - Marc Iverson, Nov 17, 1990, CFIDS Assoc Research Conference.
Patients who fail to recover within the first few years enter the early chronic stage of ME/CFS. This period is marked by an unpredictable level of dysfunction and major changes in the life pattern of the patient. The patient is left with chronic pain and severely disabling brain and muscle dysfunction, often accompanied by social and psychological impairment. There is a small but steady toll of people who find they cannot bear life anymore and take their own lives. This is also the situation, of course, with many chronically disabling conditions. It is hardly surprising when one considers the multiplicity of symptoms which can be part of ME/CFS: the devastating sense of loss it can bring about, depriving people of health, mobility, employment, education ... and perhaps worst of all severely limiting the possibility of establishing and maintaining relationships.

"It is in this period when students, youths and some adults will be most prone to suicide. The many suicide deaths usually occur during the recuperative or chronic stages of the disease." - Byron M. Hyde, MD.
"It can't be interminable. Isn't enough, enough! Would they forget that it was after eight years, not eight months or eight weeks that my spirit crumbled." - Female (18) with ME/CFS
"The pain can be quite literally unendurable. This illness destroys lives, leaving shadows of former selves to live out their years in pain, on the fringe, sometimes not even capable of caring for themselves. We are talking major league illness here." - Female with ME/CFS.
"If a doctor knows what your disease entails and still thinks suicidal thoughts are 'unwarranted' then they need to borrow some imagination." - Male (20) with ME/CFS.
"How I yearn for a better life - less (dare I say it?) no pain. The ability to do things. I feel like a prisoner in this body, in this house and the captor cannot be seen with human eyes. Under a microscope maybe." - Female with ME/CFS.
"It's horrific to have so much pain and for it to go unaccounted, unmentioned. If this pain will not abate I could welcome death." - Young adult with ME/CFS.
"A few weeks after graduation from high school Craig became very ill. He was bedridden and in a great deal of pain. Months of tests finally revealed he had the Epstein Barr virus also known as chronic fatigue syndrome. This is a new virus about which very little is known and little can be done to treat it. A person just has to wait and hope and pray the virus subsides. This virus is not supposed to be fatal, but it was to our son. Craig committed suicide on 02/20/92 because after more than 7 months of pain and frustration he couldn't stand it anymore." - Survived by Stephen, Father; Vicky, Mother; Christina, Sister.
"Every day I hung on the edge - maybe today will be tolerable. That's all I asked for.... Maybe the pain in my eyes, head, back, legs, feet, knees, hips, and the nerve pain all over and the paresthesias in my feet and lower legs and the nausea, hiccups and oesophageal spasms - maybe I'll be able to tolerate it all today. Again and again and again and AGAIN and AGAIN and AGAIN, barely hanging on, hoping only for comfort today. This hour, this half hour. Please God, take the pain away ... just for awhile - just for the next 15 minutes.
Why is that so much to ask? ... I've been in pain (which has spread and intensified) for one thousand two hundred and forty-one days. I've suffered in silence thousands of hours - it'll go away, I must be doing something wrong, maybe it's in my head, I can't be chronically ill - it can't happen to me. I'm an athlete, I'm an honor student, I have to get my degree and be a special ed teacher - I want to give to others - so how can I be ill like this?
[During the last 10 days] my body fell apart (= pain). My gastrointestinal tract was being attacked by the virus. I woke up with the hiccups at 3am, I was nauseous around the clock, I couldn't eat. My leg pain was constant - without even walking on them. I've suffered through at least 2 - 3 migraine/vascular headaches a day for 4 weeks. I wear BenGay on my feet, knees, calves, and quadriceps covered with surgical weight support hose all day - putting on more BenGay 3 - 4 times a day. I am constantly holding an ice pack to my eyes. I also put tea bags on my puffy, painful eye lids 2 times a day, just to try to relieve the aching so I can watch some special on TV. I was doing all this and taking the Dilaudid - it doesn't touch it. Very seldom does it last through an hour. It's the truth."
"I cannot go on like this. No one should have a life like this." - Last message from Female (29) with ME/CFS who took her own life after four and a half years of suffering.

The lack of recognition by the medical profession of the intractable pain associated with ME/CFS and associated lack of appropriate management and concern, is a major contributing factor in the increasing number of suicides. Normal pain relieving medication is frequently inappropriate and ineffective, leaving patients in unbearable desperation for relief.

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11.0 Role of Community Services

11.1
"COMMUNITY SERVICES" include:


11.2 Currently, community services in Australia serve people with ME/CFS, their families and carers very poorly. Services and support for others experiencing chronic and serious illness are generally available. Usually this assistance is provided without the ambivalence, relative ignorance and generally negative attitudes with which this assistance is provided to CFS patients, their families and carers. This situation exists in relation to services delivered by both trained professionals and by voluntary workers. The situation is totally unjustifiable in the light of the considerable suffering and disadvantage experienced by many people with this disease.
The doctor has the major responsibility for the care of people with ME/CFS. However, many ME/CFS patients do not have a supportive, well informed medical practitioner. For them, their families and carers, the support of local community services is vital. For those patients with families or others who can support and care for them, community support is essential. For those people with this disease living on their own - and often dependent on community services for meeting their most basic needs - lack of appropriate support often proves devastating. The doctor and community services must work together to meet the needs of people with this disease. The current serious inadequacies within community services for people with ME/CFS can be best addressed by a commitment to public education contributed to and publicly backed by the Australian medical profession.
Other essential processes are:

However without medically backed and properly informed public education no real progress can be made.
11.3 Issues for patients, their families and/or carers: The following issues have serious implications for the provision of Australian community services:

11.4 Deficiencies in service delivery to people with ME/CFS and their families/carers by "Community Services":
Poor linkages between the medical profession and the range of community services in relation to this disease, due to:

  1. lack of commitment by the medical profession, due to generally held negative attitudes to ME/CFS.
  2. lack of understanding by doctors of the need for community services support for ME/CFS patients.
  3. lack of follow-up by doctors if they do initiate a referral to a community service. iv. general reluctance of GPs to refer any patients to community services.


Poor linkages between specialist self-help groups (eg. State "ME/CFS" Societies) and the range of community services due to:

  1. lack of financial and general support to these groups by government, medical profession and community services - owing to lack of understanding of their benefits to consumers.
  2. 'community services' ignorance and generally negative attitudes to the disease.
  3. Lack of accessibility for consumers and potential consumers, due to:
  4. Lack of staff training, leading often to inflexible and inappropriate help being offered, e.g. - Community nurses needing to be aware of abrupt fluctuations in symptoms which require flexible care. - Meals-on-Wheels presenting problems to bed-ridden patients.
  5. Lack of effectively communicated and accessible information regarding services.


11.5 Notes regarding individual service type in relation to their service for ME/CFS patients:
Social Work Services within Public Hospitals: Hospital social workers have to act as advocates and intermediaries within the hospital system.
H.A.C.C. Program: These services are provided on a local basis. People who live alone or have dependent children ( or other dependent family members) living with them must be regarded by all H.A.C.C. Services (and in particular "Home Care") as having top priority. The burden upon carers is often overwhelming. Where service is delivered by staff with only basic training, meeting the needs of people with ME/CFS is a challenge. There must be acceptance by all H.A.C.C. workers that the person with ME/CFS is to be believed, in terms of their statement of what type of needs they have at any one time.
Home Nursing Services: In most local home nursing areas there will inevitably be patients who urgently require this assistance but are not receiving it. The negative experience of hospitalisation for these patients makes this service even more essential. Present demand does not represent the level of need due to lack of G.P. referral. Family members and carers currently carry a huge burden of providing 24 hour care with almost no relief.
Respite Care: Currently there are no respite care services with appropriate services for people with ME/CFS. Respite services that are available for people with other chronic/disabling diseases are not appropriate.
Self Help Groups: Consumer based groups are essential components of the health and welfare sector. They enable consumers to provide feedback to service providers and provide mutual support. These groups are critically important to people with ME/CFS.

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12.0 Income Security - Social Security and Other Entitlements

12.1 Because ME/CFS can be a severely disabling, chronic illness of indeterminate length; and because there is no consistently successful treatment and no known cure, patients with this illness must be considered eligible for Commonwealth Department of Social Security entitlements such as:

12.2 In addition, the following other entitlements are applicable:

12.3 People who care for an ME/CFS patient on a full-time basis should be eligible for the Department of Social Security Carer's Pension.
12.4 In assessing eligibility to Social Security and other entitlements for people with ME/CFS and their carers, the following points need to be seriously considered:

12.5 Role of medical profession:

12.6 Role of self - help and support groups: ME/CFS Societies and Support Groups, together with other community services have a vital role to play in informing, advising, supporting and advocating for people with CFS in relation to their entitlements to income support.
12.7 CURRENT URGENT ISSUE REVISED "IMPAIRMENT SCHEDULES" FOR THE DISABILITY SUPPORT PENSION ARE DUE TO BE TABLED IN THE SENATE IN APRIL. THEY WERE REJECTED BY THE SENATE ON THE LAST DAY OF SITTING IN 1996. THEY FOCUS ON THE NEED FOR COMMONWEALTH MEDICAL OFFICERS TO RECOMMEND ONLY PEOPLE WHO RECEIVE, OR CONTINUE TO RECEIVE, THE DISABILITY SUPPORT PENSION WHEN THEY ASSESS THERE TO BE A CERTAIN LEVEL OF IMPAIRMENT IN RELATION TO ONE AREA OF DISABILITY. THIS WOULD PRECLUDE MANY PEOPLE WITH CHRONIC CONDITIONS, WHERE THEIR INABILITY TO WORK IS CAUSED BY A NUMBER OF DISABLING SYMPTOMS. ME/CFS PATIENTS ARE WITHIN THIS CATEGORY. WE REQUEST THAT THE REVIEW COMMITTEE TAKE UP THIS ISSUE WITH SENATOR JOCELYN NEWMAN, MINISTER FOR SOCIAL SECURITY, AS A MATTER OF URGENCY. IF THE NEW SCHEDULES PASS THE SENATE AND ARE APPLIED WHEN PEOPLE WITH ME/CFS APPLY FOR DSP (OR ARE REVIEWED), IT IS LIKELY THAT PEOPLE WHO EXPERIENCE CONSIDERABLE SUFFERING AND WITH NO OTHER WAY OF RECEIVING INCOME SUPPORT WILL BE LEFT TOTALLY UNSUPPORTED.
(Please note: Some Department of Social Security staff are expressing great concern over the future of those, who because they lack one pre-dominant disabling symptom, may not be able to receive any statutory income support in spite of having no access to any other income. People with ME/CFS are one of the groups about which they are concerned.)

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13.0 Research

13.1 In view of the fact that ME/CFS has Priority 1 listing with CDC, U.S., there is a perceived imbalance in Australian research. We urge a change in emphasis from the present psychiatric focus.
13.2 Certain barriers to research are acknowledged:

13.3 We note in all early cases of CJD, initial diagnosis was depression, corrected to CJD at autopsy.
13.4 Study of the most severely affected group may more readily identify the underlying disease mechanisms.
13.5 There is a growing view in the international research community, which suggests understanding of ME/CFS is hampered by using heterogeneous study groups leading to contradictory research findings.
13.6 Little or no research has been done on the chronic features of disease in ME/CFS. These patients tend to be forgotten - they have adjusted to their altered abilities and are rarely seen in clinical practices, having long since ceased to look for help from physicians. Those who have the misfortune to fall ill as children, adolescents and young adults and who fail to make recovery and have insufficient social support can become a significant proportion of the chronic poor.
13.7 In considering recommendations for future research, we would urge close examination of and support for:

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14.0 Recommendations

14.1 While acknowledgment is made that the problems outlined in this submission occur in the context of limited medical knowledge, they nevertheless reflect a very grim picture for people who have or may have ME/CFS. Many implicit and explicit recommendations are made throughout this submission. Additionally and specifically we list further recommendations.
14.2 Initiatives directed towards fully informing the medical profession (GPs, specialists, hospital staff, doctors who assess entitlements of Social Security, Insurance and Superannuation) to increase competence in diagnosis, treatment, management and advocacy; these should include:

14.3 Programs to further develop and evaluate diagnostic methods and treatments.
14.4 Development of practical methods to ensure accurate documentation and long term monitoring.
14.5 Establishment of a central disease register/data collection.
14.6 Collation of follow-up documentation of recipients of high dose IVGG side effects and possible identification of a sub-group for whom such treatment is contra indicated.
14.7 Development and dissemination of literature for target groups including health professionals, educators, employers and consumers, including government and private agencies dealing with people with ME/CFS.
14.8 Identification of strategies to ensure the rights of those severely affected to obtaining appropriate care including palliative care and access to specialised respite care facilities.
14.9 Consideration be given to support for the establishment of multidisciplinary, broadly based ME/CFS clinics.
14.10 Implementation of a committee meeting biannually modelled on the U.S. CFS Coordinating Committee - see Appendix.
14.11 Establishment of a national multidisciplinary forum for the update, exchange and debate of information and developments pertinent to ME/CFS.
14.12 Recognition that issues of access to diagnosis, appropriate case information, and peer support are heightened in rural and remote areas and initiatives must address these.
14.13 Strong participation by consumers, ie. people with ME/CFS and carers, in the development and implementation of recommendations 14.2 to 14.12. 15.0

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15.0 Consumer Perspectives

Consumer perspectives relating to the review process are:

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16.0 Acknowledgements

We wish to thank Lisa Willis and Susie Duncan for their generous assistance and patience in the typing of this manuscript.

This submission has been compiled by: A. Gotsis C. Hunter A. Leggo M. Stephenson

We have been assisted by the inclusion of much of the earlier submission by the ME/CFS Society of N.S.W. Inc., written by S.Hawke and G. Alt, to the 1993 Chronic Fatigue Syndrome Review chaired by Dr. D. Watson.

This submission is endorsed by the ME/CFS Society of N.S.W. Inc.: "We endorse the submission as being a valid, objective and representative account of concerns held by many of the members of the M.E./Chronic Fatigue Syndrome Society of NSW Inc. and commend it to the Review Committee."
Peter Foster - Acting President
Pat Coughlan - Secretary
M.E./Chronic Fatigue Syndrome Society of NSW Inc.

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List of Submitters

Individual consumers supporting this submission are:
Format: Person with ME/CFS, (age), length of illness, address.

Stephanie Alt (aged 21 years) 8 years 19 Bayswater Road Roseville NSW 2070
Trish Brooker (Carer) for Karen Brooker (aged 20 years) 4 years 27 Bayvista Avenue Maslins Beach SA 5170
Warwick Goulding 10 years 9 Larool Avenue Lindfield NSW 2070
Mrs A Drummond-Gower (Carer) 37 Lawndale Avenue North Rocks NSW 2151
Anne Gotsis (Carer) for 2 children/young adults (aged 10 and 21) 5 & 8 years 12 Moore Street Bardwell Park NSW 2207
Robert and Joan Gwyther 31 Dorset Street Leura NSW 2780
Prof. M Halliday Prof. R Hasan 23/41 Kangaroo Street Manly NSW 2095
Neil Halliday 23/41 Kangaroo Street Manly NSW 2095
Viv Horwood (Carer) for Emma Horwood (aged 19 years) 61/2 years 16 MacPherson Street Clapham SA 5062
Janet Howell (Carer) for Lily (aged 22 years) 21/2 years 12 Price Street Melrose Park SA 5039
John and Chris Hunter 43 McIntosh Street Gordon NSW 2072
Michael and Annette Leggo (Carers) for 2 children/young adults (aged 19 & 26) 11 years 34 Stewart Street Artarmon NSW 2064
Michael Lyons (aged 29 years) 7 years "Parmedman" Gulargambone NSW 2828
Meredith McDonald (Carer) for Melissa (aged 23 years) 13 years Belinda (aged 19 years) 13 years 213 The Cove Road Hallett Cove SA 5158
Judith Matthews (Carer) for Bethany (aged 19 years) 6 years 5 Scot Road Dernancourt SA 5075 M & O Peri 13 Francis Street Naremburn NSW 2065
Tony Peri (aged 28 years) 7 years (also Carer of person with ME/CFS) 13 Francis Street Naremburn NSW 2065
Margaret Ryan (Carer) for Kate (aged 27 years) 7 years 24 Longworth Crescent Castle Hill NSW 2154
Kate Ryan (aged 27 years) 7 years 24 Longworth Crescent Castle Hill NSW 2154
Colleen Shellshear (Carer) for Prue (aged 24 years) 4 years 12 Hampden Avenue Wahroonga NSW 2076
Kerri Staples 10 years 61A Wandeen Road Taylors Point NSW 2107
Maureen Stephenson 16 years 4/242 Ben Boyd Road Neutral Bay NSW 2089
Gregory Street (aged 26 years) 186 Highs Road West Pennant Hills NSW 2125
Lisa Tesoriero (aged 27 years) 15 years 186 Highs Road West Pennant Hills NSW 2125
Margaret Tesoriero (Carer) 186 Highs Road West Pennant Hills NSW 2125
Jan Vallejo (Carer) for Tanya Vallejo (aged 25 years) 9 years 31 Woodhall Drive Happy Valley SA 5159
Margaret Whyatt (Carer) for Rebecca (aged 20 years) 13 years 8 Boothby Street Clapham SA 5062
Ted and Jan Wilson (Carers) for 2 children Timothy (aged 19 years) 5 years Nikki (aged 15 years) 5 years 157 Somerville Road Hornsby Heights NSW 2077
Dianne Wilson-Roberts (Carer) for Louise (aged 18 years) 5 years 15 Gomont Terrace Hawthorn SA 5062
Alex Zegebroks (Carer) for Elita (aged 23 years) 3 years 1 Wooltana Avenue Myrtle Bank SA 5064

Correspondence regarding this submission should be addressed to:

C. Hunter
P.O. Box 2093
Bowral NSW
2576

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Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

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