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

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:

• to reduce distress to patients
  
• to minimise risk and incidence of misdiagnosis and potentially dire consequences to patients and families, including the official removal of children from parental care, scheduling, psychiatric intervention, etc.
  
• to acknowledge growing evidence that adequate rest and intervention in the early stages have a critical influence on prognosis.

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:

• patients can fall into three groups: limited duration with resolution, a remitting/relapsing chronic course, or a progressive course.
• duration is uncertain and unpredictable.
  
• as with all chronic illness the patient becomes an expert in his/her condition and how it affects him / her.
  
• patients often have to deal with prejudicial labelling, dismissive attitudes and damaging psychospeculation.
  
• chronicity/severity is NOT as a result of attitude, belief systems, psychological inadequacies, inappropriate bed rest or "deconditioning".
  
• type, frequency and severity of symptoms fluctuates often rapidly and unpredictably, giving rise to problems in areas of employment, education, patient's credibility, planning activities, commitments and responsibilities, receiving proper care.
  
• extreme caution is required, due to idiosyncratic reactions and sensitivities out of all proportion to dosage, to medications/chemicals/fumes.
  
• caution/avoidance may be required in regard to innoculation/immunisation reactions.
  
• the plethora of approaches in question poses many problems. These include: untested/unproven treatments; cost; availability; credibility; selection and combination of treatments; cohesion of patient management; conflicts and jealousies between champions of differing approaches.
  
• whilst most of the "treatments" used for ME/CFS patients are, strictly speaking, unproven, we would argue here that this is not grounds for dismissal of treatments but rather for further research and experimentation as to the role they may (or may not) usefully play. It is overwhelmingly evident to us, on the basis of all our information, that there is a body of possible means of impacting on a ME/CFS patient's condition. This is not to say they are "cures", or that they will benefit all patients, or benefit those they do help to the same degree. They should not, however, be dismissed at this stage.
  These means may include (in no particular order):
  Food and chemical sensitivity management, ie. elimination diet, Gamma globulin (IV & IM), Vitamin C - (IV, IM and oral), Vitamin B (especially B12) (IM and oral), pharmaceutical anti-inflammatories, Magnesium (IM), Nutritional and dietary programmes, Acupuncture and Chinese herbs, Vitamin, mineral, nutritional, and herbal supplements (E.P.O), Pharmaceutical pain relief, Homeopathy, Anti depressants, Osteopathy & Chiropractic, Allergy management, Naturopathy, Massage, Anti fungal measure,s Toxicity management, Physiotherapy, Oxygen. Whilst some of these treatments may only benefit a minority of ME/CFS patients, the benefits to this minority may be profound and should therefore be taken seriously.
  
• management of severely ill ME/CFS patients presents enormous difficulties and responsibilities - symptoms of intractable pain, paralysis, paresis, seizures, cardiac problems, incontinence, paralytic ileus and overwhelming infections. Access to respite care may be required. 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.

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.

• management needs to be structured to the individual.
  
• the importance of the patient's participation in decisions relating to management must be considered.
  
• each person with ME/CFS (child or adult) has to find his/her own safe limits and must not have activity, mental or physical, prescribed by others.
  
• ME/CFS patients tend to overestimate their abilities and need to learn NOT TO PUSH (the "push and pay principle"). Over-enthusiasm to restore function appears to have poor long-term consequences, as indicated in the CHROME Case History Research on ME, U.K. 1996.
  
• a medical team approach, according to the patient's symptoms, may be appropriate.

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:

• permission to rest for as long as needed
  
• trusting the patient to resume activity gradually as symptoms ease
  
• regarding any activity of daily living, eg. moving in bed, making a cup of tea, as exercise
  
• gentle passive physiotherapy to prevent contractures where there is paresis or paralysis
  
• possible splinting where there is spasticity
  
• the use of a wheelchair where appropriate
  
• disability parking entitlement.

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.

• dietary management
  "Nutrition may be one of the most important interventions in this disorder. A patient should limit fat and simple sugars and they should avoid complex or difficult to digest proteins such as red meat." - Paul Cheney M.D. Ph.D. A significant minority of patients with ME/CFS benefit by eliminating certain food additives and natural food chemicals from their diet. Broad based multivitamin / multimineral support may also be of benefit in regulating immune activation, metabolic disturbance and functional impairment.
  
• sleep management
  Sleep disturbance / altered rhythms need to be recognised as part of the C.N.S. disturbance and not mistakenly attributed to depression. The early morning awakening of depression distinguishes it from ME/CFS sleep patterns. Protocols to 'normalise' sleep patterns invariably fail.
  
• medication
  Emphasis needs to be drawn to the extraordinary sensitivities to minute dosages and the risks associated in ignoring this idiosyncrasy.
  
• stress management
  It is important to clarify issues with regard to stress. Stress is defined as 'effort/demand upon energy'. For ME/CFS as with all medical conditions, stress compounds the burden or may be a final trigger where pre-existing conditions predispose to the disease. Such stresses can be: mental, cognition, physical, emotional, auditory - hypersensitivity to sound, visual - hypersensitivity to light, dietary, infection, surgery/anaesthetic, trauma, temperature extremes, environmental/poor air quality, gas heating, chemical fumes Management advice needs to acknowledge all stressors to assist the patient.

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