Abstract: At the 1998 M.E. /CFS conference in Australia, both Myalgic Encephalomyelitis and Chronic Fatigue Syndrome were used to describe a chronic illness. This paper is a discussion on the similarities and differences in these two terms that may lead to scientific difficulties. The author suggests that the definitional criteria and epidemic history of Myalgic Encephalomyelitis (M.E.) and the inclusion criteria are significantly different from the CDC definitions and history. The three typical phases of M.E. are discussed. A brief review of some of the known deaths in phase 2 of M.E. are also mentioned.

 

Probably the best descriptive definition of M.E. is found in Ramsay's book mentioned earlierⁱ or in the Doctoral Thesis of Dr. Andrew Wallace,^vii a Scottish physician who immigrated to Adelaide, Australia. Wallace's thesis discusses an epidemic in Cumberland in Northern England. It is unfortunate that more M.E. physicians have not read it. This thesis is important since it not only represents one of the best descriptions of the epidemic M.E. disease but also documents deaths associated with this illness. The deaths although few in number are important since not only do they give us a useful pathological insight, they also underline the potential and usually unrecognized severity of M.E. Documented deaths have occurred in several M.E. epidemics, but are best documented in the Cumberland epidemic and were well known in the Akureyri epidemic. All of these deaths involved CNS injury. The Akureyri epidemic involved at least 7 prepubertal children in Friedrikshavn who developed M.E. followed by Parkinson-like illness and died. ^x Documented deaths in sporadic cases of M.E. are known, but it is my experience that treating physicians often become vitriolic when the deaths are attributed to M.E by the families of the deceased. M.E. and CFS may be the only illnesses in history from which some physicians believe the patient is invulnerable to death.

 

Phase #2: Principal Illness: The acute phase of the principal illness then appeared in these patients. They complained of limb, back and neck pain, paraesthesiae and blurring vision. Muscle cramps, spasms and twitching and deep muscle tenderness were common but the dominant feature was muscle and brain fatigability and irritability even after a minimal degree of physical or intellectual exertion. Evidence of autonomic nervous system involvement was present in many cases. Another major component was cerebral involvement, which usually took the form of impairment of memory, concentration and emotional response. Seizure-like phenomena are not unusual. Many of these Royal Free patients had abnormal EEGs during the phase #2 period. The illness was considered consistent with an encephalomyelitis. The patients often complain of (a) abnormal cardiac rhythm, or (b) unusual cardiac movement. However, when examined by routine ECG, pathological features are rarely observed. In some cases the cardiac symptoms actually represent pectoral or other muscle spasm. In others, orthostatic cardiac irregularities that are not necessarily observed in supine ECG examination may be the cause. Diaphragmatic or counter-peristaltic abnormalities may also cause these sometimes pseudo-cardiac symptoms. During this phase the patient often appears quite ill. This phase can persist for weeks, months, or, in severe cases, one or two years. In a rare small percentage of individuals, phase #2 can persist for years or even permanently. This is unusual. In general, the severity of the complaints, particularly the abnormal muscle movements, seizure phenomena and severe headaches tend to taper off. Autonomic dysfunction, when it is of significant importance, rarely improves. As noted, infrequently phase #2 can become chronic. Very infrequent deaths have been known to occur in this phase and usually are represented by two different pathophysiologies. . Dr. John Richardson of Newcastle upon Tyne, U.K. has noted deaths in professional athletes who return to active professional sports, "to work off the flu". Cause of death has been attributed to orthostatic cardiac irregularity. It is also during this phase that CNS deaths occurred in the Cumberland Epidemic, in the Akureyri epidemic, and in one of the Mediterranean epidemics.

Aims: We report the results of a UK survey conducted by the "25% Group", a patient-led group of which MERGE is the research arm, which has highlighted the seriousness of the condition of these particular patients and their needs. Methods and Results: In July 2000, a custom-designed questionnaire was sent to all 400 members of the "25% ME Group", a self-help organisation in the UK whose membership is restricted to housebound or bedridden patients. The questionnaire contained 18 questions about their current medical condition and their illness experience. Question responses were analysed descriptively. The Table below shows that 55% of respondents had been ill for more than 10 years, and 50% of them had taken more than 2 years to obtain a formal diagnosis of ME/CFS. Twenty-five percent of respondents described themselves as bedridden, and 57% had been either housebound or bedridden for more than 6 years. As regards appropriate medical advice or treatment, 29% reported that none had been offered during the course of their illness. Only 25% of respondents felt that their condition was improving, or had improved from an even more chronic level. Important additional findings were that 76% (162/212) of respondents felt that the lack of a diagnosis or appropriate advice in the early stages of their illness had impacted on the severity and longevity of their symptoms; that 38% (81/212) described themselves as totally dependent on others; and that 48% (104/215) reported no regular assessment or management of their condition. Conclusions: This survey shows that human cost of ME/CFS can be substantial, a fact that is generally under-reported in the medical literature and ignored by systematic reviews of clinical trials. We suggest that the impact, prevalence and the pathways to chronicity of this disease need urgent investigation.

"Severely ill are severely overlooked; just ignored and invisible." CMO report 2002, Section 2.3.1

Ignored and invisible! When the authors of the Chief Medical Officer's report of 2002 coined that phrase they were referring to the exclusion of the most severely ill people with ME from community and social care provision. However, the same description also holds true for mainstream scientific research.

A cursory glance at the existing scientific literature on ME (largely held in electronic databases — mainly MEDLINE — and specialist resources like the downloadable database of some 3000 abstracts at the MERGE website) reveals the virtual absence of information on the most severely affected people.

The Table below gives the number of articles (loosely defined) published for some randomly-chosen illnesses, and it shows two things. First, that ME is a Cinderella illness compared with other comparable chronic conditions in terms of volume of research publications; and second, that research on the severely ill is a rarity in most illnesses, including ME.

There is a full spectrum of disease severity, with some patients being mildly affected while others are in wheelchairs or completely bedridden. The clinical outcome of CFS usually takes one of the three courses: recovery/improvement, relapsing/remitting course, and permanent incapacity or progressive deterioration of symptoms. Studies have shown that recovery is uncommon, with only 4% of patients recovering and 39% showing some symptom improvement after four years.

The quality of life may be particularly and uniquely disrupted in CFS and patients have related profound and multiple losses, including loss of jobs, income, relationships, careers, financial security. Activity is reduced to basic survival needs for some patients. Australian researchers found that patients with CFS had more dysfunction than those with multiple sclerosis, and that the degree of impairment is more extreme than in end-stage renal disease and heart disease, and that only in terminally ill cancer and stroke patients was the sickness impact profile (SIP) greater than in CFS. CFS usually affects people in the prime of their life and, consequently, has a significant impact on the nation's productivity. Studies on the burden of disease and cost to society have shown a staggering social and economic impact, based on cost of treatment, loss of earnings and tax revenue and the cost of federal and state benefits.

An infectious disease specialist and head of the AIDS and CFS Clinic at Oregon Health Sciences University, testified that a ME/ICD-CFS patient, ‘feels effectively the same every day as an AIDS patient feels two weeks before death.’

Dr Dan Peterson, one of the doctors who delineated a tragic [ME/ICD-CFS] cluster outbreak in Incline Village, Nevada (often considered the epicentre of the disease), employed a protocol called the Medical Outcome Study to systematically evaluate the level of suffering in a group of [ME/ICD-CFS] patients. He and his colleagues measured people with [ME/ICD-CFS] against a control group and against patients with various ailments. When he presented his findings, Peterson revealed the astonishing fact that no other set of patients had measured so poorly. [ME/ICD-CFS] patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that [ME/ICD-CFS] patients scored the lowest. "In other words", said Dr Leonard Jason in a radio interview, "this disease, this syndrome, is actually more debilitating than just about any other medical problem in the world." Nevertheless, most accounts of the illness have simply shortened its name to the flip and damaging misnomer "chronic fatigue" as if [ME/ICD-CFS] is a mild inconvenience.

Quotes taken from What is M.E.?

"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

• severely limited cognitive function
• intractable headache often associated with facial swelling particularly around eyes
• atypical seizures
• grand mal
• paresis
• paralysis
• spasticity
• dysphagia
• gastroparesis, dismotility
• paralytic ileus, reverse peristalsis
• severe angina
• marked weight loss or gain (up to 40% of body weight)

Abstract: The objectives of the research were to identify the group of patients in the UK who have been rendered so chronically disabled by myalgic encephalomyelitis/chronic fatigue syndrome that they cannot leave home unassisted and to assess aspects of their physical and cognitive levels of disability at the onset of the illness and at present. METHODS. Participants were sought through patient organizations and individual physicians; data, in the form of detailed case histories, were collected by means of self-report questionnaires. All patients fulfilled the CDC criteria and had received a diagnosis of myalgic encephalomyelitis (ME) post-viral syndrome (PVS)/chronic fatigue syndrome (CFS) from a general practitioner or a hospital consultant. The following further criteria were also applied: (i) chronicity (duration of illness of not less than two years); (ii) a specified level of disability (inability to leave home without assistance). RESULTS. Patients identified: 147 to date (and steadily accumulating). Duration of illness: >5 years: 81%; >10 years: 38%; death: 2 (the first after a 15 year illness, the second after 7 years). CONCLUSION. These preliminary results suggest that, in a percentage of cases of ME/CFS, chronicity of a scale not previously documented is a significant feature of the disease. They also suggest that certain physical and cognitive disabilities increase with increasing chronicity.

This kind of heart murmur occurs when one of the valves in the heart (the mitral valve, which is on the left side of the heart) collapses to a certain degree (which varies from person to person). In minor cases, mitral valve prolapse can cause little more than a distinctive clicking sound heard when listening through a stethoscope. But in severe cases, mitral valve prolapse can cause chest pain, fatigue, heart arrhythmias -- typically, causing the heart to beat too fast -- or even sudden death.

It is not known why heart problems develop in some CFS patients, and many U.S. researchers doubt that they are connected to CFS. But Dr. Byron Hyde, who studies CFS in Toronto, commented at a 1991 research conference that the heart problems associated with CFS are "major." Dr. Hyde also pointed out that no one in North America is studying this potentially life-threatening aspect of the disease, a statement which is still true today.

 Severe and Very Severe Patients with Chronic Fatigue Syndrome: Perceived Outcome Following an Inpatient Programme Diane L. Cox, PhD, MSc, Dip COT; Leslie J. Findley, OLJ, TD, MD, FRCP, FACP Journal of Chronic Fatigue Syndrome, Vol. 7(3) 2000, pp. 33-47
Affiliations: Diane L. Cox, Senior Lecturer in Occupational Therapy, Faculty of Health, South Bank University, Southwark, London SEI 0AA, UK. Dr. Cox was Head Occupational Therapist and Coordinator of the CFS Team at Essex Centre for Neurological Sciences.
Current address of Diane L. Cox: Department of Occupational Therapy Education, St. Martin’s College, Lancaster, LA1 3JD, UK.
Leslie J. Findley is Consultant Neurologist, CFS Diagnostic & Management Service, Essex Centre for Neurological Sciences, Oldchurch Hospital, Romford, Essex, RM7 0BE, UK.

Most studies on CFS do not include the more severe expressions of the disease...

However, although the definition states that, ". . . CFS is characterised by severe disabling fatigue . . .," and identifies the subgroups discussed previously, it does not discuss the range of disability and reduced functioning seen within the syndrome (1). In addition, most studies on CFS do not include the more severe presentation of the disease (4-8). In addition, health agencies often do not appear to appreciate the differing level of dysfunction seen within the illness and the consequent impact on daily life (9). This descriptive paper therefore aims to illustrate the perceived outcome of these more severely affected patients following the inpatient programme.

[Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com Website: www.HaworthPress.com ]

Usefulness of the Fukuda and Holmes definition in the diagnosis of CFS P De Becker [1], J Nijs [1], N McGregor [2], K De Meirleir [1] Dept. of Human Physiology, Vrije Universiteit Brussel, Belgium Collaborative Pain Research Unit Department of Biological Sciences Faculty of Science University of Newcastle Callaghan, New South Wales Australia

The Holmes and Fukuda criteria are widely used criteria all over the world, yet a specific European study regarding CFS patient symptomatology has not been conducted so far. This study was performed in an outpatient tertiary care setting fatigue clinic in Brussels. 2073 consecutive patients with major complaints of prolonged fatigue participated in the study. Multi-variate analyses were performed to assess the symptom presentation within a fatigued population and the differences between the Fukuda and Holmes definitions compared with an excluded chronic fatigued group in a large cohort of fatigued patients. Of the 2073 patients complaining of chronic fatigue, 1578 CFS patients fulfilling the Fukuda criteria (100% of CFS group) and 951 (60.3% of the CFS group) fulfilled the Holmes criteria. Discriminantfunction analysis revealed that the Fukuda and Holmes definitions can be differentiated by symptom severity and prevalence. The Holmes definition was more strongly associated than the Fukuda definition with the symptoms that differentiated the CFS patients from the patients that did not comply with the CFS definitions. The inclusion of ten additional symptoms was found to improve the sensitivity/ specificity and accuracy for selection of CFS patients. The CFS patients fulfilling the Holmes criteria have an increased symptom prevalence and severity of many of the symptoms that determine the difference between CFS and CF patients. Patients fulfilling the Fukuda criteria were less severely affected patients which leads to an increase in clinical heterogeneity. We can conclude that the use of the Holmes criteria defining symptoms of fatigue, swollen/tender lymph nodes, sore throat, muscle weakness, recurrent flu-like symptoms, postexertional fatgigue, myalgia, memory disturbance, nonrestorative sleep with addition of certain symptoms (hot flushes instead of low-grade fever, attention deficit, paralysis, new sensitivities to food/drugs, difficulties with words, urinary frequency, cold extremities, photophobia, muscle fasciculations, lightheadedness, exertional dyspnea and gastrointestinal distrurbance) to the Holmes definition and removal of others (arthralgia and low-grade fever) would strengthen the ability to select CFS patients, also the incorporation of a severity index would be beneficial for subcategorization of patients.

Do the 1988 and 1994 CFS case definitions identify the same illness complex? Lana A. Tierskv, Stacy Weisberg, John DeLuca, and Benjamin H. Natelson

Objective: The decision to modify the original CFS case definition was based more on a perceived need to do so than on empirical data to support the proposition that the 1988 CFS case definition did not identify a distinct group of cases. If it is true that the 1988 criteria do not delineate a distinct group of cases, patients fulfilling these criteria should have the same symptom complexes as those fulfilling the relaxed 1994 case definition. Conversely, if patients fulfilling the 1988 case definition are a distinct group, their symptom pattern should differ from the profile of individuals fulfilling the 1994 CFS case definition. One purpose of this study was to evaluate these possibilities by comparing the symptom presentation of subjects diagnosed according to the 1988 CFS diagnostic criteria to the symptom complexes of subjects diagnosed according to the 1994 CFS diagnostic criteria. Differences in activity reduction and symptom onset were also investigated. Methods: Sixty-two subjects completed a questionnaire that obtained information pertaining to CFS symptomatology as well as illness course. The data collection format of the list allowed subjects to respond if a CFS symptom was present as well as at what severity the symptom was experienced. Based on responses to the questionnaire CFS subjects were divided into two groups:

1) Subjects meeting the 1988 criteria for CFS, and
2) Subjects meeting the 1994 criteria.

Patients meeting the 1988 criteria also all met the 1994 criteria; however none of the patients meeting the 1994 criteria also met the 1988 standards. Thus, we were able to delineate two groups. Results: When subjects who met the 1988 case criteria (n=45) were compared to those who met only the 1994 criteria (n=17), subjects in the 1988 group were found to suffer from a more severe form of the illness. Specifically, subjects in the 1988 group demonstrated more severe symptoms as well as a greater reduction in activity. The latter group also more frequently reported infectious-type symptoms as well as a sudden illness onset. Conclusions: The 1988 and 1994 CFS case definition criteria appear to identify distinct patient groups. Given that the subjects in the 1988 group more frequently endorsed infectious symptoms as well as more frequently reported a sudden flu-like illness onset, an infectious etiology for this group is hypothesized.

Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution Bart Stouten Published 13 May 2005 ©

Background A recent article by Reeves et al. on the identification and resolution of ambiguities in the 1994 chronic fatigue syndrome (CFS) research case definition recommended the Checklist Individual Strength, the Chalder Fatigue Scale, and the Krupp Fatigue Severity Scale for evaluating fatigue in CFS studies. To be able to discriminate between various levels of severe fatigue, extreme scoring on the individual items of these questionnaires must not occur too often. Methods We derived an expression that allows us to compute a lower bound for the number of items with the maximum item score for a given study from the reported mean scale score, the number of reported subjects, and the properties of the fatigue rating scale. Several CFS studies that used the recommended fatigue rating scales were selected from literature and analyzed to verify whether abundant extreme scoring had occurred. Results Extreme scoring occurred on a large number of the items for all three recommended fatigue rating scales across several studies. The percentage of items with the maximum score exceeded 40% in several cases. The amount of extreme scoring for a certain scale varied from one study to another, which suggests heterogeneity in the selected subjects across studies. Conclusions Because all three instruments easily reach the extreme ends of their scales on a large number of the individual items, they do not accurately represent the severe fatigue that is characteristic for CFS. This should lead to serious questions about the validity and suitability of the Checklist Individual Strength, the Chalder Fatigue Scale, and the Krupp Fatigue Severity Scale for evaluating fatigue in CFS research.

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A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome. De Becker P, McGregor N, De Meirleir K.VUB, Vakgroep Interne Geneeskunde, KRO gebouw niv.-1, Laarbeeklaan 101, 1090 Brussels, Belgium. pdbeck@minf.vub.ac.be

OBJECTIVE: The Holmes and Fukuda criteria are widely used criteria all over the world, yet a specific European study regarding chronic fatigue syndrome (CFS) patient symptomatology has not been conducted so far. This study was performed to answer the need to assess the homogeneity of a large CFS population in relationship to the Fukuda or Holmes definitions and to assess the importance of a symptom severity scale. DESIGN: Multivariate analyses were performed to assess the symptom presentation within a fatigued population and the differences between the Fukuda and Holmes definitions compared with an excluded chronic fatigued group in a large cohort of fatigued patients. SETTING: An outpatient tertiary care setting fatigue clinic in Brussels. MAIN OUTCOME MEASURES: Prevalence and severity of symptoms and signs in a CFS population and in a chronic fatigued population. SUBJECTS AND METHODS: A total of 2073 consecutive patients with major complaints of prolonged fatigue participated in this study. Multivariate analyses were performed to assess the symptom presentation and severity and the differences between the Fukuda and Holmes definitions. RESULTS: Of the 2073 patients complaining of chronic fatigue (CF), 1578 CFS patients fulfilled the Fukuda criteria (100% of CFS group) and 951 (60.3% of the CFS group) fulfilled the Holmes criteria. Discriminant function analysis revealed that the Fukuda and Holmes definitions can be differentiated by symptom severity and prevalence. The Holmes definition was more strongly associated than the Fukuda definition with the symptoms that differentiated the CFS patients from the patients that did not comply with the CFS definitions. The inclusion of 10 additional symptoms was found to improve the sensitivity/specificity and accuracy for selection of CFS patients. CONCLUSIONS: The CFS patients fulfilling the Holmes criteria have an increased symptom prevalence and severity of many symptoms. Patients fulfilling the Fukuda criteria were less severely affected patients which leads to an increase in clinical heterogeneity. Addition of certain symptoms and removal of others would strengthen the ability to select CFS patients.

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A day in the life of severe M.E. by Jodi Bassett

A detailed personal account of what severe ME is like to live with on a daily basis.

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*O* Cancer and Myalgic Encephalomyelitis

An Australian mother* explains the difference between how her daughter was treated by medical staff when she had cancer and when she later developed Myalgic Encephalomyelitis - and the devastating additional burden the ignorance and psychological propaganda surrounding M.E. has caused her child to have to bear.

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*O* The Story of Sophia and M.E. (from the Invest in M.E. website)

This is the heartbreaking story of Sophia, who through medical maltreatment and neglect, died of M.E. in 2005. This story illustrates all too tragically that M.E. is a serious neurological illness which is too often dismissed out of hand by doctors; sometimes with devastating consequences. An excerpt:

The result of the inquest into the death of Sophia Mirza

*O* Inquest Implications by Eileen Marshall and Margaret Williams, 16 June 2006

*O* Civilization: Another word for barbarism by Gurli Bagnall 17 June, 2006 [On the inquest into the death or Sophia Mirza.]

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*O* Suzy's story (on Invest in M.E.)

'Less than a year on from the start of this bad deterioration, the illness turned into a nightmare of the worst kind.

The months dragged by.  For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement.

By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.' [Click on the link in the title to read the entire article]

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Shannon's Story (on Invest in ME)

I'm 24 years old, with skin milk-white from staying indoors. I've been house bound and mostly bedridden for six years.

Even my dad doesn't believe me at times that I'm really sick. Or he latches on to some far-fetched explanation of things, or wacky new treatments. If a doctor tells him it's psychological, he's believed the doctor over me. I hate that. Always I have to defend myself.

My mother died, and there is no one to take care of me. I am very weak, and it's difficult to get food, and I can't eat processed food because of my sensitivities. I was wishing today that someone would walk into the room where I was lying on the floor, helpless and out of it, and bring me a warm bowl of chicken soup. It was five hours before I could get up and open a can of tuna. At last count, I had gone 16 days without bathing.

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Issues related to severe ME and the involvement of the UK Psychiatric lobby By Greg Crowhurst, September 3rd 2005

'There are an estimated 62,500 people with severe ME /CFS in the UK receiving "seriously inadequate health care" according to the Chief Medical Officer (DH 2002) [3]. Quality of life tests indicate that people with severe ME/CFS feel similar to patients with AIDS two months before death in their ability to do things. Australian researchers found that patients with severe ME/CFS experience more dysfunction than those with Multiple Sclerosis, that in severe ME/CFS the degree of impairment is more extreme than in end-stage renal disease and heart disease and that only in terminally ill cancer and stroke patients is the sickness impact profile greater than in severe ME/CFS. [4]

Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME/CFS is fatal [5].

The terms 'fatigue' and 'chronic fatigue' were not associated with this illness at all until the name was changed from ME to Chronic Fatigue Syndrome (CFS) in 1988 in the US [6]'

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A survey of those most severely affected by ME/CFS (by the 25% ME Group)

The 25% M.E. Group sent out a questionnaire to its members to help it prepare a submission for an inquiry into M.E.

The whole submission is over 50 pages long (it also includes information from previous surveys they have done). Read the Survey

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*O* Ean's Story by Barbara Proctor, Ean's mother

An excerpt: 'On Monday 23rd May, two social workers arrived on our doorstep and took Ean away under a "Place of Safety Order". We were not even allowed to go with Ean in the ambulance. Ean was to be in the joint care of Dr C, a psychiatrist, and Dr B, a paediatrician, at the local hospital.

During the whole time Ean was in care, we were allowed to see him for only half an hour a day. He was alone in a ward, could not move, could not speak, and had no way of getting help if he needed it. He had been told that he had been taken away from us because he was dying. Ean had to endure the most horrific mental torture. One day the psychiatrist told him "There is nothing wrong with you.... if you don't talk next week, you will be better off in Ballamona [the mental home]". Ean was so scared, he wet himself as he sat in his wheelchair. The Staff nurse would say to him that if he didn't speak or walk "He would grow old in his wheelchair, stay in the hospital for ever, and never go home again". One night, Rob and I found him very distressed in his wheelchair, all alone. He had wet himself, as no-one had asked him if he wanted to go to the toilet, at lunchtime... It was now 7.40 pm. Friday was the day Ean lived in dread of. This was the day the physiotherapists would take him off to the remedial pool.

On one occassion they just dropped Ean into the pool, hoping that he would use his arms to save himself. Ean couldn't, and just sank underwater. The swimming sessions went on. After just one week in the hospital, Ean's condition deteriorated; he looked exhausted each evening after physiotherapy; his mouth was full of ulcers again; his permanent headaches returned; his feeling of constant nausea was worse than ever; and his eyes hurt because
his dark glasses had been confiscated. Dr C said that Ean had never had M.E. - just "school phobia" and an "over-protective mother".

Ean was in care in the local hospital for nearly six months.'

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*O* Sick, Not Tired by Ciara MacLaverty

If the medical administrative staff are anything like the students they work for, they will be told little or nothing about Myalgic Encephalomyelitis (ME), the illness that has kept me largely bed-bound for the past 15 years. I’ve lost count of the times medical staff have said to me: "I don’t really know very much about ME. You get tired a lot, don’t you?"

No. I’m 35 and haven’t been "tired" in the conventional sense of the word since I was a teenager. As anyone with severe ME will tell you, it has nothing to do with being tired and everything to do with being physically ill.

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*O* "No Total Rest" prescription is irrelevant to acute ME  From Ciara MacLaverty

 

It's been almost 20 years since I was first diagnosed with ME. The controversies surrounding causes and management of ME have raged through the decades but one fact remains constant: I took a virus in 1987 and I have never had a day's full health since then. My health appears to be permanently damaged. Ditto hundreds of thousands of sufferers.

 

I want to express my concerns over the widely touted dictate that "Total and/or Prolonged Rest is counter-productive in ME."  Even some of the moderates, who are firmly in the "ME is a serious physical illness" camp, can advocate this position. The "No Total Rest" (NTR) approach simply does not apply to my experience of severe ME.

 

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Ingeborg is from The Netherlands and has very severe Myalgic Encephalomyelitis. Read her story.

 

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HILLARY JOHNSON TALKS ABOUT CHRONIC FATIGUE SYNDROME AND HER NEW BOOK, OSLER'S WEB

 

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Sara Bass's testimony to the CFS Coordinating Committee on Stephen Paganetti's bedridden case.  

 

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*O* The Ean Proctor Story

In this “care”, the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool. The terrified child was also dragged out of the hospital ward and taken on a ghost train because psychiatrists were determined to prove that he could speak and they believed he would cry out in fear and panic and this would prove them right. Another part of this “care” included keeping the boy alone in a side-ward and leaving him intentionally unattended for over seven hours at a time with no means of communication because the call bell had been deliberately disconnected.

 

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The books: CFS: A Treatment Guide by Verillo and Gellman, Stricken: Voices from the Hidden Epidemic of CFIDS edited by Peggy Munson, Shattered: Life with ME by Lynn Michell and Osler's Web by Hillary Johnson all contain many excellent and detailed patient accounts of severe M.E.

 

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Illness made Laura Hillenbrand a long shot to finish the acclaimed book Seabiscuit By Sally Jacobs

A Sudden Illness -- How My Life Changed by Laura Hillenbrand

Laura Hillenbrand Surmounted Illness To Cross the Finish Line With 'Seabiscuit'

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Ten things severe ME sufferers wish ME societies would do by Ricky Buchanan

 

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OPEN LETTER TO CONSULTANT, DR. JH by Gurli Bagnall, 17th February 2004

 

Your business is supposed to be health, but only on your terms -   irrespective of whether or not those terms are in the patient's best interests.  If someone does not respond or cannot tolerate your methods, tough! Correct me if my memory has let me down, but last time I looked, I believe  The Health and Disability Commission's Act stated that the patient should be given all the options and allowed to make the choice if that is his or her wish.

 

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BEFORE THE LIGHT DIES By Gurli Bagnall, October 2005.

 

With the production of more and more psychiatric drugs, each supposedly better than the last, mental disorders should now only be found in the history books. But they are not. Far from it. We now have an epidemic of psychiatric illnesses such as we have never seen before. And what about ME? What about the Gulf War Syndrome? Given that the mountain of evidence pointing to these being organic diseases is ignored, and given that the victims of them are swept under the psychiatric carpet to be stomped on, you do not need to be a rocket scientist to realize that there is a massive cover-up afoot. It boils down to the fact that, despite the billions thrown at research every year, medical science has barely scratched the surface of disease. So who benefits from those billions?

 

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The Right to Die: The need to support and pass 'Right to Die' legislation in Australia and around the world. Written by an Australian person with severe Myalgic Encephalomyelitis, June 2006, (name withheld by request). An excerpt:

 

'I know this is a touchy subject, but it's a very important one for people with severe ME. Our quality of life can become so abysmal that we no longer have any choices at all: we can't move or do anything for ourselves. The right to die is a choice that we need to have, so that we can keep on fighting, in confidence that even when we become unable to move or function, we can still make that choice and have it carried out. I believe future generations will look back and be appalled at how we allowed such extremes of suffering in severe illness/disability. The children of the future will see us as savages, torturing our own kind.'

 

PLEASE NOTE: The full text of this piece is very graphic and is a very non sugar-coated description of severe M.E. and so may be very upsetting to read. Those who would like to read the full text can do so on this page.