CFS Health Consumer Perspective:
CFS Management: Meeting many needs

Advocacy

The historical perspective of Chronic Fatigue Syndrome pervades the lives of those who have CFS; this perspective includes inadequate peer advocacy, medico-legal advocacy, active and passive disability discrimination, the trivialising, if not denial, of their experience, and often, subsequent mismanagement. Specific and well organised political and research advocacy is essential to bring justice and equity to the understanding, management and treatment of CFS.

Individual support

Meanwhile, in terms of individual support, a network of resources can be constructed to assist the needs of people with CFS (see Appendix A: fig. 1).

Education, awareness, and management can inform people with CFS how these systems can promote or impede well being and their journey toward an uncertain future. Their future could for the vast majority of PwCFS include, at best, recovery or, at least, a degree of increased wellness.

Belief systems, life philosophies, and life-skills needed in managing chronic illness also become important with the onset of CFS. Medical practitioners experienced in the management of chronic illness are initially well placed to manage CFS. People with CFS look for knowledgeable, understanding medical practitioners. It is apparent, from views expressed, that many people have been unable to access this quality of service.

A path toward symptom amelioration and possible healing involves stepping stones of interpersonal interaction, trust and sensitivity between all involved with the illness.

"Doctors need to understand CFS. While people with CFS have much in common with people with other chronic illnesses, they nonetheless suffer from a distinct condition which needs to be thoroughly understood by doctors. Characteristics of CFS such as the symptoms, the potentially fluctuating nature of the illness, the propensity for major relapses, and the possibilities of food or drug intolerance and chemical sensitivity, need to be recognised. They also need to recognise that in some cases CFS can be a severe, long term condition, and that people do not always begin to improve after two or three years. Guidelines should highlight these issues, because they are fundamental to a good relationship between the PwCFS and doctor, and to appropriate illness management."

Accurate Diagnosis & Informed Management:

Early diagnosis with informed management has been perceived to promote better outcomes. Accurate diagnosis will take time. Scheduling PwCFS into a busy practice may mean allocating more time than that normally used in a typical GP consultation. If practitioners are aware of this, appointments can be organised accordingly

Dangers of misdiagnosis

The consequences of misdiagnosis impinges on so many aspects of the life of a person with CFS. It has been reported that diagnosis has often been linked to the specialty of the first health practitioner that the PwCFS consults (for example, immunological, psychiatric, neurological, allergies etc). Applications for health care benefits, workers compensation and/or disability payments also can be impeded by misdiagnosis causing great hardship.

"I was then sleeping over 16 hours a day. After consulting a number of medical practitioners, the majority of doctors misdiagnosed or gave such reasons as anorexia and school phobia when the tests revealed no abnormalities. I particularly recall one paediatrician recommending I return to school the following day when I could barely walk out of his surgery. I cannot express how distressing this kind of dismissive treatment was, especially as I knew I was not imagining or faking sickness."

Any notion of attributing the illness to a psychological/psychiatric cause is strongly rejected in the submissions; as is the notion of somatization. While it is admitted that the social-psychological effects of chronic illness may complicate illness outcomes, people with CFS deny pure psychological attribution as a primary explanation for the illness.

"The label of somatization may really be directed at the (undesirable) behaviour of an individual who is nonetheless suffering from a non-psychological disease. In other circumstances and situations, behavioural characteristics such as persistence, introspection and vocalisation/complaining may be appropriate and even admired...."

"I was recently contacted by a girl who has had CFS for 2 years and has had very little support. She has been made very unhappy by suggestions from lay people and doctors that "it is all in her mind." Many of us have had similar problems but it seems worse to me for a youngster who has no store of experience to draw on to fight these silly accusations. This attitude is causing real harm and would be hard enough to deal with even if you were healthy. In my opinion we must do something because:

1. It disempowers the sufferer at the least and may harm them to the point of causing otherwise avoidable consequences of stress;

2. If one says "it is in your mind, it apportions blame to the victim so there is no need for anything to be done to help the sufferer; no need for anything the sufferer says to be taken seriously; no need (in extreme cases) for financial support for that sufferer.

I think this issue is one of the most important (apart from finding a cure, of course)."

Management: a Partnership

People with CFS generally desire a collaborative model of GP practice ( 2 ) . In the recognition that there is no known cure for this illness, a collaborative management model involves a partnership between doctor and the person with CFS involving empathetic support, shared information and decision making, awareness of treatment options; all tailored to the needs of the individual. The person with CFS may have many answers, solutions, resources and perspectives that are of great value. Other medical management models have been found to be obstructive and contrary to the needs of the health consumer.

Factors such as the recognition of the illness, knowing the particular illness, early diagnosis, support from family, friends and practitioners, are contributing factors to improvement. Woodward , 1992, also noted denial of illness and the exposure to doubt and disbelief by health practitioners/family/friends as factors contributing to people getting worse.

The following extract of ideas, drawn from the Submissions Compilation Document, may be useful for both the PwCFS and medical practitioner during a consultation.

• LEARN how to diagnose CFS and how it affects us
  
• UNDERSTAND that the illness affects each person differently
  
• LISTEN to the patient explaining their symptoms
  
• REALISE that the patient might feel so dreadful that their neurocognitive functioning isn’t working very well sometimes so give them TIME to explain
  
• HELP them work out a MANAGEMENT PLAN. If the doctor hasn’t the time or knowledge to do this:
  
  • REDIRECT them to someone who can. eg. A ME/CFS State Society
    
  • WRITE DOWN instructions for the PwCFS or suggest they tape their consultation, so that they can play it back when they get home. ME/CFS people often forget half of what they wanted to say or might be using incorrect words to describe their needs or can’t remember everything the doctor said.
    
• If you are PRESCRIBING MEDICATIONS - EXPLAIN IN WRITING WHY, WHAT FOR AND HOW THEY WORK.
  
• SUGGEST the PwCFS brings their family members to see you so that you can EXPLAIN the illness and management plan to them.
  
• if you think the patient needs COUNSELLING for whatever reason - EXPLAIN to them honestly your reasons.
  
• ENCOURAGE the PwCFS to return regularly to see if any other illnesses have developed
  
• LEARN all you can about this illness and keep up to date with research, knowledge
  
• GIVE the PwCFS HOPE, CARE, and KINDNESS.

Allowing normal reactions to loss

The grieving process associated with chronic fatigue syndrome as with all chronic illness needs to be recognised. Stages which fluctuate in intensity, in a non-linear manner, include shock, non-acceptance, anxiety, frustration, depression before glimpses of acceptance of the imposed life changes emerge. A grudging toleration or a more positive acceptance of their life situation may finally occur.

For the health practitioner, normal but sometimes unexpected emotional reactions may become apparent in relation to their own frustrations, disappointments and impatience about the nature of the illness. A sense of inadequacy, frustration, and lack of answers may also cloud their own interactions with the PwCFS. A high level of professional and self-awareness will be needed at these times.

Treatment of CFS symptoms

To date, there is no known cure for CFS. Therefore treatments are, at best, ameliorative.

Management of CFS symptoms relies on rest, gentle exercise appropriate to the individual PwCFS, lifestyle modification, and various medical treatments such as, analgesics, antidepressants, anti-inflammatory drugs. Medical practitioners may wish to discuss with the PwCFS alternate and up-to-date drugs that may assist specific symptomatic problems.

Amelioration of some symptoms using "alternate therapies"

Relief from some symptoms has been reported by many who have engaged in treatments considered "alternative" by mainstream medicine. These include the use of Vitamin and mineral supplements; notably E, B6, B12, L Glutamine, C (including I/V), Intra-muscular B12 injections, zinc, magnesium (including injectins), essential fatty acids; Naturopathy, Homeopathy, Chiroparactic, Acupuncture, Reflexology and massage (including myofasial and lymphatic drainage).

Other useful strategies

include meditation, relaxation techniques, body movement techniques aimed to improve mobility such as Feldenkreis, Chiropractic, Alexander Technique, Tai Chi, Yoga, massage and exercise that is appropriate to the individual PwCFS.

A note of caution was provided in one CFS Society submission:

We recognise that there is to date no scientifically proven benefit for PwCFS from any form of alternative medicine, although some individuals do seem to benefit from particular treatments they try. We also know that people are desparate to get well.....Some desperate people are exploited by general practitioners (as well as alternative practitioners) offering unproven treatments. Where a general practitioner is offering alternative treatments to PwCFs, we believe that it is essential that they are informed of the financial costs and risks of the treatment, as well as whether or not there is any published scientific evidence to support the use of the treatment in PwCFS.

In summary useful advice is often given that:

"some therapies work sometimes with some people."

Pain management

Of all the symptoms described none were so linked to thoughts of suicide as the experience of CFS-associated pain. The often unrelenting pain (in muscles &/or, joints, &/or head) experienced by many people with CFS calls for recognition and appropriate management.

"We recognise that there is to date no scientifically proven benefit for people with CFS from any form of alternative medicine, although some individuals do seem to benefit from particular treatments they try. We also know that people with CFS are desperate to get well, and will often turn to alternative medicine in their search for better health. We believe that general practitioners should respect the wishes and views of their patients in this regard, and should encourage open discussion about different alternative treatments .... Many forms of alternative medicine have little potential for harm, and at worst the patient will be financially poorer for the experience. However, where potential for harm does exist, it is most important for the doctor to alert the patient to the potential risks, and to monitor the patient’s health if a potentially harmful treatment is undertaken."

Special Needs

Submissions indicated that special needs fall into the areas associated with young people, carers, partners, support services, PwCFS in remote and/or rural areas of Australia, pain management and further research.

"As a severe chronic illness, CFS which often occurs in the prime years of life where children, wage earning, schooling, is a big issue, it is important to ensure that support exists to allow basic home needs, education, and a basic income to occur. I have observed the lack of these services being offered due to the lack of pathological evidence and confidence in the diagnostic criteria for CFS and have thereby noted some people discriminated against in achieving help and hence the opportunity of a somewhat normalised existence. The lack of such support I believe compromises the recovery of people with CFS."

Young People

The present medical and research focus and belief is that young people are able to recover from CFS earlier than adults. However, awareness and sensitivity toward the individual needs of the young person must not be subsumed by that belief. As with adults, their progress toward toward healing must be at their own pace.

"Opportunities for home schooling, distance education, part-time school, extension of time for assignments etc., is part of a school's duty of care."

Distance Education is a useful support service for a young person with chronic illness. However, recognition must be given to the fact that pace of learning needs to be based on the symptomology of the illness including cognitive problems, and extreme fatigue. Negotiation between school, parents and young person is paramount and needs to be based on the actual situation and not anecdotal tales and unrealistic expectations of a young person with CFS. Should re-entry into the school system be an option after a prolonged absence, a senstive and supportive approach will be needed such as part-time attendance or a gradual introduction.

"I don’t believe that someone will be sicker because they do not try hard enough, or there is some problem in their life that they re not addressing. I don’t see this happening in the hundreds of young people I have met. I see no correlation between severity of CFS and attitude either. Many of the young people I have met are similarly motivated as I have been. They are normal kids who just want to participate in life so badly. But some people end up far more ill than others. It’s amazing what some people with CFS are able to achieve knowing how debilitated they are. Yet despite how well they cope and survive, they are not being listened to when the problems become more complex. Often this results in them dropping out of running around to see doctors because there are not specialists dealing in CFS who will take their situation seriously and/or - more usually - they are too sick to get to the doctor in the first place."

Young people will experience different senses of loss. These may involve more a loss of activity participation and enjoyment, together with interruption of, and loss if involvement in, peer activities, education and social life

Parents too, may grieve their own loss in relation to immediate hopes for their children. Parental acceptance of their children's chronic illness and life-situation is also an issue that may need addressing.

CARERS and/or PARTNERS of the chronically ill:

"The carer feels almost as exhausted as the sufferer."

Relationship counselling and awareness can ameliorate the great stressors and changes that occur due to chronic illness. Partner's hopes, dreams, plans, and ways of life are interrupted, changed at best or ruined at worst. The effect on both well and ill partners and their immediate families needs careful, sensitive and informed monitoring.

"My husband left as he couldn't handle the restrictions imposed on my lifestyle......They (my children) were robbed of a normal childhood as they became the parents and I was the one to be looked after."

"People caring for patients suffering from ME/CFS find themselves in a very demanding situation, compounded by the very status of the illness. Carers of children may find themselves: -

• On call 24 hours per day
• Unable to pursue paid employment
• Fighting with doctors, schools etc for diagnosis, belief and support
• Losing social contacts
• Often having significant marital problems
• Under severe financial pressure

Respite care

Carers and patients are in urgent need of respite care. This care would be most appropriate in several forms:-

• A few hours each week, in the home, to give short breaks.
• A couple of weeks each year, in home, to allow the carer to have a holiday.
• A supported Residential Facility. Ideally this facility would be located in an unpolluted environment, built from non-toxic materials and staffed by trained professionals.