AHMF: Submission to RACP, sections 9 & 10

Submission to the RACP CFS Clinical Guidelines Review Committee
Continued

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

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:

Treatable co-morbidity. There is a high incidence of psychological morbidity in patients with CFS, particularly secondary depression. Inability to perform normal daily activities, and the associated disruption of social and family life, work and recreation, causes frustration and loss of self esteem in most patients. As the duration of illness lengthens and hope of rapid recovery fades, frustration can give way to depression, especially in patients who lack a supportive family and social network.
Cognitive and behavioural response. As with any disease, patients with CFS exhibit a range of beliefs and fears which can influence behaviour and exacerbate disability. It is useful for the physician to tactfully explore the individual's understanding of the nature of the illness and beliefs about its possible consequences.
Psychological background. Coping styles and behaviour in the face of chronic illness also vary with personality, family and cultural background, and it is useful to take these into account when planning management. Caution should be exercised to avoid making stereotypic value judgements in considering the role of "somatization". The implications of "imaginary" illness entailed in this label can be a source of confusion for physicians and of guilt and resentment for patients, most of whom have a firm belief in the "physical" basis of their illness.

"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.

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.

Continue to section 11