Pediatric Primer

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Cognitive deficits (sometimes called “brain fog”) are some of the most functionally disabling symptoms of ME/CFS. They are of great concern to children and adolescents because they impact their ability to learn and attend school (see The School System).

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Slow mental processing speed, impaired working memory, poor learning of new information, difficulty with word retrieval, increased distractibility, decreased concentration and attention span, and inability to multitask may be found (85–87).

 

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Psychological Reactions Secondary to ME/CFS:

Distinction from Depression and Anxiety Disorders

Studies focusing on psychological problems in pediatric ME/CFS patients are limited. In this section, available studies have been supplemented by the insights of our experienced clinicians. It is important to distinguish:
(a) normal emotional reactions to ME/ CFS
from
(b) clinically significant psychiatric symptoms such as depression or anxiety secondary to ME/CFS
and from
(c) a primary psychiatric illness such as Major Depressive Disorder (MDD) or an anxiety disorder without co-existing ME/CFS.

Emotional Responses to a Chronic Illness

Emotional responses to the difficulties of ME/CFS are common. These responses are similar to the responses of young patients with other chronic illnesses. Grief and anger can arise over illness-related losses, from negative responses to the illness from family members, friends and school staff, and from the pervasive stigmatization of this particular illness. Apprehension commonly follows the onset of an illness, which can be undiagnosed and about which there is generally ignorance. There can be frustration with the inability to do things that were easily done beforehand. Outbursts of weeping can stem from excessive tiredness and/or feeling overwhelmed. Emotional distress can also occur because of disbelief by others regarding the reality of the illness, or by the prescription of inappropriate remedies by health-care providers.

Some young patients despair of medical care and plead to decline hospital admission, due to previously experiencing the hostile and disbelieving attitudes of some health care providers and/or the exacerbation of their illness by increased hospital-related activity and the noisy environment. These emotional responses to the illness do not ordinarily rise to the level of a psychiatric disorder, but occasionally, psychiatric symptoms are more severe, and a clinically diagnosable, psychiatric disorder can co-exist with ME/CFS.

I thought this was good that it was said explicitly.

 

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Comorbid conditions:

Good to see a long list like this rather than making people think they are very unlucky to have a whole selection of unrelated symptoms and syndromes. Or doctors and health professionals thinking it is odd the patient has so many symptoms and syndromes.

 

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Differences in symptoms compared to anxiety or depression:

Good to see a list like this.

 

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Occasionally depression or anxiety predate the onset of the illness, but distinctive, abnormal, pre-illness personality characteristics have not been identified in young ME/CFS patients.

Good to see this said explicitly

 

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Many young patients with ME/CFS are miserable and discouraged (fed up) by being ill, but are not necessarily depressed. There is a higher incidence of clinical depression when the young patient has encountered disbelief in the reality of her/his illness[/QUOTE]Good

 

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Differentiating ME/CFS from Primary Depressive and Anxiety Disorders without Co-Existing ME/CFS

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Some features distinguishing ME/CFS from primary psychiatric illnesses are shown in Table 5. In patients with ME/CFS, long-lasting post-exertional exacerbation of fatigue and other symptoms can follow mild exertion or even normal activity, whereas patients with major depression or anxiety often feel better after increased activity, exercise, or mental effort. OI, hypersensitivities to light, noise and medications and/or low body temperature, and intolerance to heat and cold are typical of ME/CFS, but not typical of psychiatric illnesses. Young women with ME/CFS often experience greater premenstrual mood lability.

Most teenagers with ME/CFS are highly motivated to recover and return to their previous lives. They generally have a strong desire to be more active, but cannot tolerate the necessary exertion. In contrast, patients with major depression do not have the desire to be more active but could be.

Adolescents with MDD show depressed mood, a sense of worthlessness or guilt, low self-esteem, loss of interest in socializing and in previously enjoyable circumstances (anhedonia), and a lack of interest in the future. Although these are typical symptoms of MDD, some young people with ME/CFS (but without co-morbid depressive illness) might also feel guilty because their illness has disrupted their family, and a parent might have had to give up work to care for them. They might also be reluctant to make plans to socialize, because they know from past experience that they might find themselves at the time of the event to be too ill to participate, have to cancel, and let down their friends. Anhedonia has not been reported in ME/CFS unless MDD was also present. Young people with ME/CFS often take much pleasure in previous activities, even if the activities exceed their energy reserves and cause subsequent symptom exacerbation.

In young people with MDD suicidal thoughts and suicide attempts can occur, more so in adolescents than in younger children. If suicidal thoughts are present a suicide evaluation should be done and referral to a child psychiatrist is often helpful. Suicidal thoughts are only seen in ME/CFS when MDD is also present.

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Child protection services =CPS

Young persons with ME/CFS placed in CPS do not fare well. When separated from their parents and sent to live with foster parents or admitted to psychiatric institutions, their ME/ CFS symptoms have often worsened.

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School Refusal (School Phobia)

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In contrast, young people with ME/CFS usually want to attend school but are prevented from doing so by physical limitations. Other distinguishing features of ME/CFS are post-exertional malaise with exacerbation of other symptoms and OI. Symptoms of school refusal improve once the child is allowed to stay at home and resolve during weekends and school vacations. By contrast, in the young patient with ME/CFS, symptoms persist during weekends and school vacations, but can improve slightly due to decreased activity. During convalescence from severe ME/CFS, the young patient might find it difficult to return to school, having been absent for a variable period of time, having lost contact with many of her/his friends and because of concern those symptoms might worsen. Such hesitancy should not be misdiagnosed as “school refusal.” It should be managed with understanding by the parents, the physician and school personnel.

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Differences compared to Munchausen's by Proxy:

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Pervasive Refusal Syndrome

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PRS is sometimes wrongly diagnosed in very severe cases of ME/CFS, when the young patient is physically incapable of sitting up or even swallowing. In contrast to PRS, the young person with severe ME/CFS usually wants to get better and co-operates with medical help such as tube feeding. Management of the two conditions consists of the avoidance of stress, medical help with nutrition, assistance with living confined to bed, and an empathetic form of management to which the young person gives consent. A mistaken diagnosis of PRS in a patient with very severe ME/CFS can result in transfer of care to a psychiatrist whose management might include detrimental regimes, such as forced exercise and separation from family.

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Serious deterioration can occur in young patients with ME/CFS who are misdiagnosed as having somatoform disorder and given psychiatric treatment that includes rigidly enforced exercise.

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Other Psychiatric Conditions

Some additional psychiatric conditions might need to be differentiated from ME/CFS. ME/CFS symptoms such as poor concentration and loss of short-term memory, noticed in the patient’s classroom, can sometimes lead to an erroneous diagnosis of attention deficit disorder without hyperactivity. If the young patient is unable to eat properly due to nausea and gastrointestinal symptoms, ME/CFS must be distinguished from an eating disorder. ME/CFS may also need to be distinguished from substance abuse.

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MANAGEMENT/TREATMENT

Myalgic encephalomyelitis/chronic fatigue syndrome impacts a young person’s entire life. Coping with debilitating medical symptoms, changed relationships within the family, absence from school, and loss of socializing with peers can all result from the illness. These losses can trigger confusion and crisis. Often the patient might not have been diagnosed and might not have received appropriate help from previous health practitioners, since the young person may not look ill and may have a normal physical examination as well as normal routine laboratory tests.

Gets across the big impact the illness can have on a young person's life

 

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Approach to Management

Currently, there is no treatment protocol or intervention which will cure ME/CFS. The role of the physician is, therefore, first, to do no harm, second, to try to improve daily function, expand activity, and ameliorate specific symptoms, and third to support the patient and the family. School personnel often need to be educated about ME/CFS and made aware that ME/CFS is a physical/organic illness, not a psychological disorder. We caution against reliance on internet-based information because much of it is anecdotal, uncorroborated, and may be designed to sell unproven products or services.

Due to variation in symptoms and co-morbid conditions, no single approach works for all patients.

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A survey of adolescents with ME/CFS found that doctors were considered to be most helpful when they validated the illness, acknowledged its effects, provided ongoing support, and monitored progress (23).

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Management is based on: early diagnosis, educating the patient, the family and school personnel about the illness, determining the dominant causes of post-exertional symptoms, treating symptoms with non-pharmacological and pharmacological interventions, providing guidance on activity, diet, maintaining social contacts and educational opportunities, and monitoring progress.

 

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Establishing the diagnosis of ME/CFS and acknowledging that the patient has a recognized illness can produce much relief

 

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Misinformation or absence of information about ME/CFS is common. Educating the patient, the parents, the wider family and school personnel about the illness is important, e.g. providing handouts (Appendices C–E). Sometimes, school personnel and child protection services might need to be persuaded that their misapprehension that the young patient has factitious disorder by proxy (Munchausen’s syndrome by proxy) or pervasive refusal syndrome is wrong and that these mis-diagnoses can seriously harm the young patient.

 

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In reviewing the patient’s most troublesome symptoms, special attention should be paid to those factors which exacerbate symptoms, e.g., upright posture.