THE FRUITS OF UNBELIEF. 

By Professor Murdoch. published in the New Zealand Family Physician

    In New Zealand there is historical evidence that  strong belief in a  certain pathophysiology  can lead to grave error    The role of the personal doctor in being there, supporting the person and the family and assisting in healing is absolutely key

On a recent trip to Malaysia, I was asked to suggest some topics for talks to interested doctors in Ipoh and Kuala Lumpur. Near the top of the list was chronic fatigue syndrome (CFS) in view of our recent book. The reply was quickly received that the topic was unacceptable because we don't believe in that over here.' A further trip to the eastern states of Australia for a day conference on CFS included a meeting in the evening for local general practitioners. None of them turned up and the reason given, you guessed it, the CEO of the local Division of General Practice 'doesn't believe in CFS.'

The conference for patients during the day was well attended by patients and the media, and the remark, which drew spontaneous applause, was that every person with CFS needs a GP and that GPs are the core of the health system.

So why do we still have this problem about making care and attention to the patient conditional on the diagnosis and its acceptability to the medical profession?

In New Zealand there is historical evidence that strong belief in a certain pathophysiology can lead to grave error. The unfortunate experiment at National Women's Hospital was based on the firm conviction that carcinoma-in-situ of the cervix did not lead to invasive cancer. Presumably there are still some doctors who do not believe in therapeutic termination of pregnancy, but if they hold such views they are ethically and morally required to share these beliefs with the patient and invite them to consult with another doctor who has no such scruples. One wonders whether all the doctors who 'don't believe in' ME/ CFS, feel duty bound to reveal their unbelief to those who consult them with fatigue and all the other problems associated with the illness.

It is now nearly twenty years since Peter Snow observed the rising prevalence of a fatigue in his community, which led to the name of 'Tapanui flu' for the illness.  Shortly after that I also became involved in the long battle to ensure that such people were identified, understood and managed appropriately. Much has interventions may not apply to primary care. Their conclusions were that it cannot be assumed that results from secondary care can be extrapolated to primary care and that the quality and amount of evidence on mental health interventions for back pain, chronic fatigue syndrome, and irritable bowel syndrome is sometimes poor.

This reminds me of a significant paper by Ian McWhinney when he quotes William James who said that sometimes a large acquaintance with particulars about a person is better than  a knowledge of generalities. In this case the generalities of treatment of CFS are unknown but this is far from saying that there is no effective treatment for CFS. In my experience (Level IV evidence admittedly) the majority of individuals with CFS recover slowly over a two to three year period. The role of the personal doctor in being there, supporting the person and the family and assisting in healing is absolutely key. But then I would say that, I'm a believer and we wrote the book.

CHRONIC FATIGUE SYNDROME a Patient-centered APPROACH by Campbell Murdoch and Harriet Denz-penhey.      an excellent book

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State of the Science Conference. By Jill McLaughlin

The National Institutes of Health:  October 23-24, 2000. Introduction:

    David Bell, M,D., FAAP, gave his perspective of what it is like providing care for CFS patients. Confidence must be exuded by one's primary care physician (PCP). In an area where primary care is at its best, good science is artfully applied by the clinician in the prevention of disease, the identification of the illness, and its treatment, whether that be for cure, symptom improvement, or support. "Somewhere;' he said, "this process has gone terribly wrong as it applies to CFS."

There are numerous problems in the clinical care area as it relates to CFS. There is an inherent conflict between the state of the science and the art of medicine. In the era before the maturation of science, supplements and hope were part of the physician's approach, mostly because the results of treatments were dismal. Primary care physicians trained themselves in compassion and hope in order to make up for the shortcomings of science.

    Today, the emphasis is purely to cite a need as a basis of medical care. What is the clinician to do when science does not provide clear cut answers? Managed care does not present a barrier in ME/CFIDS. Whether a child has ME/CFIDS or leukemia, the physician should recommend superb special care at a good university hospital coupled with good primary care. There is probably no group of specialised physicians that have taken ME/CFIDS under their wing, so it is now in the field of primary care.

     There is an environment of confusion. We don't know the cause. This is acceptable and not a barrier. Primary care physicians are used to treating illnesses for which we don't know cause. We treat MS, RA, and cancer, but we have the tools to treat these illnesses effectively. The problem of the primary care physician is whether or not to attempt treatment. Should the patient be dismissed? Does it exist? A belief has been fostered by an Annals paper that "a psychosomatic illness" such as ME/CFIDS can be encouraged by a sympathetic physician, and Plioplys in the Journal Paediatrics suggested that diagnosis not be made for fear of fostering disability! That presents a real problem, and many primary care physicians felt they had the "rug pulled out from under them. There is lingering suspicion that by treating and supporting the patient, you may be worsening the illness which goes against the first dictum of medicine: First, do no harm."

     If the physician agrees ME/CFIDS is real and legitimate, then there are many questions. Is it psychological? Mitochondrial dystrophy? Is it an injury caused by infection? An anatomical abnormality? The list goes on. The answers to these questions will take a lot of time and serious study. But the lack of comment from both the government and the professional societies such as the American Academy of Paediatrics have encouraged the pervasive confusion that swirls around the principal care practitioner's head. Too often the PCP will say, "we do not treat that" and dismiss the patient without care or support. Scientific debate is to be encouraged, but the basis of the debate must be to increase understanding and not to serve as a convenient excuse to discriminate against a person with certain symptoms.

     There is a problem with the diagnosis. The CDC took a huge step with a research diagnosis, but we need a clinical diagnosis to get past the concept of this being a wastebasket disease. Clinicians agree that ME/CFIDS has distinct presentation even though the needed support cannot come from negative laboratory testing. For patients, a diagnosis is critical.

      Then there is the problem of disability. Frequently, it is the PCP who must decide if the patient meets the criteria for disability. In the CDC pamphlet it says no lab tests can make the diagnosis, yet to establish disability, one must prove the illness either with abnormal physical findings or laboratory tests. The physician must prove the disability. Two different federal agencies are at odds here.

     A child is often denied appropriate support because of confusion and lack of understanding. This points to the most crucial problem that ME/CFIDS "is solely the fault of the patient like some ill-defined character flaw."  Where do we go from here? We do not have the aetiology. It would be nice to know but we just do not know. But the PCP does not need to know the cause or cure to offer appropriate care. Just as the patient needs support for the illness, the practitioner needs support as well We need a consensus that ME/CFIDS is a legitimate illness regardless of the aetiology. We have to eliminate any talk of this illness being real or not. We need the support of scientists and science must be provided to give the physician the confidence to treat and to provide ongoing care. We need to establish guidelines with the emphasis on symptom reduction and the removal of the perception that pain medication and medications used for off-label use are not good because the illness may not be real.

     We need to establish guidelines for disability to apply to these patients. We need to stop trying to study fatigue. “A full 25% of the population is fatigued." It is not fatigue. It is having limits, orthostatic intolerance, aesthenia. But the PCPs do not understand the patient cannot be upright for more than a few hours at best because they don't have enough blood! We need education on the range of this illness "in order to get past the concept that there are no treatments." To support the patient, it is essential to remove the stigma accompanying the illness. This can be accomplished by a determined effort to provide information and to encourage aggressive symptomatic care.

    A PCP must provide assurance that the patient is taken seriously and will not be dismissed. It has been the general perception that ME/CFIDS patients are "difficult, troublesome, even litigious," but the problem has been generated by medicine rather than by the patients. "In my experience, patients with CFS have been remarkable individuals facing an uncertain and certainly uncomfortable future and they face this with courage and bravery and dignity. As such they are entitled to the respect and dignity which most patients with this illness have yet to receive" 

(reprint with permission. National CFIDS Foundation Inc. 103 Aletha Rd, Needham, MA 02492-3931)

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           M.E/CFS in Children. Source: "Special Children Magazine" (U.K.) December 2000. Jane Colby explains the issues for teachers.

 Points on the Education of Children with ME. When a formerly fit child suddenly develops a severe case of ME, the decline  into ill health can be dramatic.    

  Autumn Awareness. ME often starts in the autumn term, just when new physical and intellectual  demands are placed on children beginning a new school year or entering a new  establishment. Staff may suspect stress, and the child may be considered psychologically troubled, but summer/autumn onset is just one of many known epidemiological features of this disease, no matter what the patient's age.

 Entering a new social group gives maximum opportunity for spread of  organisms and staff themselves are not immune: teaching is the highest risk occupation for developing ME. Children's absence from school has led to  parents being suspected of neglect, of condoning truancy, or even of Munchausen's Syndrome by Proxy, where a person harms another to gain  attention. School phobia or anorexia are common misdiagnoses and a survey  by the BBC 's Panorama team found that 59 per cent of families were told  their children's illness was due to psychological problems. The cluster  pattern means that a school with one case of ME may have more; it is not  uncommon for a vigilant teacher to be the first to spot a case.

  Educational Deficit.  ME has devastating effects on education, causing more long-term sickness  absence than any other illness. A five-year study of six widely-spread LEAs  revealed it as responsible for 51 per cent of such absences. No other  disease came close to this figure; cancer and leukaemia, the next most common, scored only 23 per cent. For a child, the key factor in recovery is  often the way in which education is managed. By law, the child must be educated, and is entitled to the best education possible, but educational  demands often turn a mild case into a severe one. Teachers have a huge  responsibility to avoid this, while still enabling the child to achieve as  much as possible. How do we reconcile these apparently conflicting aims?  Personal experience and study of this illness over the years has enabled  me to develop principles which, if applied, work consistently from case to  case and do enable the child to achieve educationally whilst preserving  health as much as possible.  

 Sickness versus Special Educational Needs.  A sick child can receive home tuition in the short term, with the aim of  returning to school as soon as possible. A child with special educational  needs is typically the subject of long-term plans to enable learning to  take place as effectively as possible. The child with ME unfortunately falls  into both categories at once and should always be drawn to the SENCO's  attention, firstly because inappropriate education can worsen the illness  and secondly because brain function is damaged; conditions such as dyslexia  and dyspraxia may develop. An Individual Education Plan is useful, whether or not statementing is contemplated. The increasing use of Home and Hospital services enables many sick children to attend a setting suitable for their  needs instead of having tuition at home, but attendance as a unit of any  kind is not always right for a pupil with ME. Where health is put first, the family will be eternally grateful and a true teacher-parent partnership  can develop.

  Porridge Brain. The well-known term "porridge brain" is a classic amongst people wit ME.  The sensation of tying to access information when attention and concentration are no longer possible is reminiscent of how Mother Hubbard felt when she went to the cupboard to get her poor dog a bone. When she got there, the cupboard was bare. Trying to recall information when brain fatigue has set in is like finding a set of empty neural shelves. No matter how hard the child tries, thinking is impossible, and trying to think produces unpleasant physical symptoms. Brain scans, both in children and adults with ME, show that when effort (physical or mental) is undertaken, blood flow to the brain decreases and the oxygen supply is reduced. Normally, effort results in an increase in blood flow to the brain because of the increased demands upon it.

 Conclusion.  These are some of the principles of energy-efficiency in education. However, over and above energy-efficiency we must build in the flexibility  to respond to the illness itself and its vagaries. The illness typically  varies during the day, so that each child will have a 'best time' when the  brain is at maximum arousal. This is the most efficient time to deliver a lesson, and is often during the afternoon or early evening, due to defects.  In the brain's hypothalamus gland and its control of automatic functions  like body temperature and sleep. Relapses due to vaccinations, other  infections, and any unusual demand upon the child are not predictable  either. The health status of the child, i.e. how far health has progressed  towards stabilisation of the illness, so that efforts will not produce full  relapse but only a short setback, must always determine the approach. This  is what I have termed Status Responsive Education and it is the overall  guiding principle informing everything else.

  Finally. we must allow these children to have a life. 'I saw him out on his  bike' means I saw him trying to have a life'. ME is a soul-destroying  illness and children have to learn about it; they must sometimes test the  boundaries and learn from the relapse which ensues if they go too far.

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