-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Pediatric Primer
- Thread starter Denise
- Start date
I imagine there is a good chance a lot of patients are already doing quite a lot of total activity and don't need to waste their energy on specific exercise activities.Mildly Impaired Patients
Leisurely walking with an initial duration of 5–15 min followed by a rest is suggested. The duration or pace of the walking can be increased gradually provided post-exertional symptoms do not occur.
Sporting activities often involve high-intensity activity so I'm not sure if suitable they are.Higher Functioning Patients
An exercise program might involve joining some organized sporting activities at school, but with modified participation.
Medications for fatigue might need to be reserved for potentially exhausting occasions such as school exams.
Cognitive Impairment
[..]
Aggravating factors include mental and physical activity; distraction by noise or bright lights; and prolonged standing.
Cognitive problems can be improved by:
[..]
Performing mental work lying down can sometimes be better than sitting up.
The use of prescribed stimulants such as low-dose methylphenidate can benefit some patients; the patient should be warned that there is a risk that a sense of well-being can lead to over-activity.
Support and Coping Skills
The young person with ME/CFS needs to learn to adapt to the reality of the illness, and integrate it into a meaningful life despite sometimes severe physical limitations. Above all, the young patient needs to develop a sense of achievement in her/his life, however, small.
All aspects of the young person’s life might need to be addressed. She/he might need to deal not only with physical and cognitive limitations, but also with misunderstanding of the illness, fear, grief, anger, guilt and isolation.
I generally don't like when the phrase "abnormal illness behaviour" is used but this seems like a reasonable exampleSometimes having ME/ CFS can result in abnormal illness behavior, such as denial of the reality of the illness.
Could be good but it does depend whether the therapist themself has accurate information.Our experience suggests that the following elements of basic supportive therapy can be helpful:
• Exploring what the patient and her/his parents already know about the illness.
• Teaching the patient and her/his family about ME/CFS and correcting any misinformed notions about cause, course of the illness and forms of management.
• Making it clear that ME/CFS is a medical/biological illness, but that often there can be understandable, secondary, emotional reactions.
Coping Skills Training
Young patients with ME/CFS benefit from practical suggestions for coping with chronic illness. For example, it can be helpful to provide strategies for demystifying the illness and explaining it to other people: ME/CFS is like having mononucleosis (glandular fever) and then not recovering from it.
We recommend:
• A private space at home, so that the young patient’s rest will be undisturbed and she/he is able to work without being distracted.
• Developing a daily routine, especially for patients who are housebound.
• Attempting to achieve a normal day/night cycle, to help the patient fit in with the family’s daily schedule and make school possible.
• Encouraging participation in education, however minimal, but without undue pressure (see The School System).
• Providing time for meeting with friends and for family treats.
• Incorporating rewards for achievements.
• Joining a local patient support group (if available, and if it has competent leadership).
Cognitive Behavioral Therapy (CBT)
The benefit of CBT as a psychotherapeutic intervention for ME/ CFS is currently ambiguous. CBT has been shown to be helpful for some pediatric ME/CFS patients (112–115). However, in adults, the effect size of CBT is rather modest and the effects are not always sustained (116). CBT can produce adverse effects (101). The assertion that CBT can “reverse” or cure the illness is not supported by follow-up studies (117) and immunological changes found in the illness have been shown not to be reversed by CBT (118).
The hypothesis underlying the rationale for the use of CBT in ME/CFS patients proposes that the patient’s poor health is perpetuated by avoidance of activity and by maladaptive fears, such as anxiety about symptoms that emerge after activity (119). CBT aims to improve coping with the illness by changing these “maladaptive cognitive responses” and encouraging graded exercise as well as incremental increases in other activities. The notion that the illness is perpetuated solely by dysfunctional attitudes and beliefs is speculative, lacks empirical support and is not consistent with our current understanding of the pathophysiology of ME/CFS (see Etiology and Pathophysiology). This hypothesis has led to patients being blamed for failure to recover, because, in the view of the therapist, they have not changed their so called “maladaptive cognitive responses.” Furthermore, CBT that includes rigidly enforced graded exercise frequently leads to severe relapse in patients with ME/CFS.
Nevertheless, some of the elements of CBT are part of a common sense management of many medical problems, provided they are introduced in a pragmatic and flexible manner to help individuals cope with chronic illness (113–115, 120, 121). These elements include recommendations already given in this section. It is most important for a patient with ME/CFS that any attempt to increase her/his activity level or to exercise be flexible, rather than rigid, permitting the patient to avoid exceeding her/his energy limit. The patient should also be advised that CBT does not cure the illness, but it can help in learning to live within its limitations. CBT is not always available and it can be costly. It is likely to be more successful if the therapist is knowledgeable about ME/CFS.
Alternative and Complementary Medicine
[..]
Unfortunately, in the hope of a cure, parents of young patients with ME/CFS often ask the young patient to try costly, nonestablished and speculative treatments but find little or no clinical improvement. Feedback from young people with ME/CFS indicated that 80% had tried up to 30 different alternative therapies. Only massage for pain relief and “good dietary advice” achieved “some benefit” in up to 30% of patients. A common comment from the patients was that they “were glad when their parents stopped shopping around for a cure.” (23). A review of alternative medicine studies in adults with ME/CFS revealed generally poor methodologies and limited evidence of any benefit (122, 123).
Severely ill young patients are often difficult to manage and frequently have received little help from medical practitioners. They can be socially isolated and frequently have to confront disbelief in the reality of their illness from family members, school personnel, social workers and physicians. They are in need of a great deal of practical help, emotional support and comfort. In addition to medical supervision they might require support from home health services and aides perhaps overseen by a nurse manager. The patient’s caregivers might also require support. They are under great stress and can sometimes benefit from counseling.
A vital part of management is to gain the trust of the young patient and caregivers by reassuring them that the illness is recognized as a physical illness, it is taken very seriously, that the autonomy of the young patient will be respected, and that all management/treatment options that are offered will be fully discussed with the patient and caregivers and informed consent will be requested prior to implementation of any therapy. The patient can be reassured that improvement is common, even if it takes months or years, and that recovery is possible, but cannot be guaranteed.
Management of the Very Severely Affected
Our advice is based on clinical experience, as there is little literature on this subject. Ideally one physician should accept responsibility for the patient’s care for the duration of the severe stage of the illness. If the patient is cared for at home, home visits are necessary. Further advice can also be given by telephone consultations or by e-mail. If the patient is very severely affected from the outset, confirmation of the diagnosis is first necessary. Where there is a marked deterioration in a moderately severely affected patient, the practitioner might need to exclude other illnesses. Consultation with physicians from other disciplines, who are familiar with ME/CFS, can be helpful. While remaining optimistic, the physician might find that she/he will need to accept the continuing severity of the illness. Likewise, the patient and the family might need to adjust their expectations to very modest levels. Although there are therapeutic options (see below), results of therapy are variable. Therefore, targets or predictions for recovery should be avoided.
The two best environments in which to care for the very severely affected patient are (a) the home and (b) an institution where long-term supportive care and symptom relief are the priorities and where staffs are familiar with the illness. Because of noise and bustle, a general hospital might be unsuitable. However, if general hospital care becomes necessary, attempts should be made to find a facility where the patient can be nursed in a very quiet location. We should caution that well-meaning attempts by hospital staff at too rapid “rehabilitation” (forcing the young patient to increase her/his activities too quickly) can lead to serious deterioration.
The best people to take care of the young patient are usually the parents. If the patient has to be admitted to an institution, attempts should be made to have one or two individual nurses be assigned to the patient.
Activity Management for the Homebound Patient
While cognitive behavioral therapy (CBT) and graded exercise therapy (GET) have been promoted as of value in mild and moderate ME/CFS, there is no evidence that they are of therapeutic value in very severely affected patients. Inflexible, pre-ordained GET is often harmful and leads to exacerbation of symptoms in severe cases. However, movement is important to help reduce stiffness, maintain range of motion and prevent contractures. In very severely affected patients who are confined to bed, movement is limited to tolerated activities of daily living. For those who can tolerate touch, a knowledgeable physical therapist can provide gentle, passive range-of-motion activity and gentle, passive stretching for brief periods of time (1 min at a time followed by a rest).
Any increase of activity, including moving around in bed, needs to be determined by the young patient her/himself. When possible, the gradual resumption of some activities of daily living can be encouraged, but the patient should not be pressured into this. Orthostatic symptoms might need to be treated before the patient is able to sit up for very long. Even when the patient can sit up, activity/physical therapy is usually easier when lying flat. Further progress is shown when the patient can tolerate sitting out of bed in a chair. When there is progress to the point that standing up is possible, minimal leisurely walking, for a few minutes daily can be tried. Any activity program should allow severely ill patients to pace themselves and stay within their energy envelope, however small that might be.
The Possible Impact of ME/CFS on the Family
A child or adolescent affected with ME/CFS presents challenges for the entire family. The challenges are similar to those faced by families of children with other chronic illnesses such as leukemia or juvenile rheumatoid arthritis, but with the additional challenges of widespread disbelief in the authenticity of the illness, the pervasive social stigma associated with a diagnosis of ME/CFS and a paucity of medical professionals who are knowledgeable about the illness.
In our experience, the majority of families draw on their strengths. The parents are usually able provide the necessary care, and siblings learn to cope with diminished parental attention. When families cope well with their child’s illness, the risk of emotional damage to siblings is minimized.
Difficulties can arise when family members are ill-informed about the illness, when they do not believe that the young patient has a physical illness, when one parent needs to cease working in order to take care of the sick young person, when there is only one parent and the young person is too ill to go to school and has to be left at home alone, or when the school system is unable or unwilling to provide suitable education for the patient. As with other chronic illnesses, pre-existing marital difficulties can be compounded by the strain of dealing with a sick child. Sometimes disbelief in the authenticity of their child’s illness has led the non-custodial parent to report the custodial parent to social services as a potential case of child neglect or factitious and induced Illness/Munchausen’s syndrome by proxy. Members of the wider extended family who show disbelief in the illness can also cause problems, even from a distance.
I thought this was useful enough.APPENDIX C
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Children and Adolescents—Fact Sheet
Overall I thought this was useful enoughAPPENDIX D
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Fact Sheet for Schools
One probably small omission is that individuals with ME/CFS may suffer from urgency and frequency in terms of their bathroom needs.Additional symptoms are often present and include:
• Orthostatic intolerance, which is the development of symptoms due to prolonged upright posture (standing or sitting) that result in lightheadedness (and sometimes passing out), increased fatigue, cognitive worsening, headaches, and/or nausea.
• Hypersensitivities to light, noise, touch, odors, and/or medications.
• Problems with thermoregulation such as low body temperature, intolerance to heat and cold and/or cold hands, and feet.
• Gastrointestinal symptoms such as abdominal pain, nausea, and/or loss of appetite.
Seems good enoughEducational Implications
Myalgic encephalomyelitis/chronic fatigue syndrome is the most common cause of long-term absence from school due to illness. Absence from school is usually due to poor physical and cognitive function, not behavioral factors. Some students can attend school daily, others can manage part-time, while others are homebound and some are confined to bed. Sometimes a student has enough energy for school at the start of the week, but is unable to manage school on Thursday and Friday. ME/CFS is unpredictable. A student might appear fine one day but the next day might be unable to come to school, sometimes for several weeks. There might also be long periods where she/he is unable to complete schoolwork at home.
Most students with ME/CFS experience worsening of their school performance as ME/CFS symptoms impact education.
<continues>
Seem sensible enoughSymptoms of ME/CFS worsen after physical exertion. Participation in sports can deplete the student’s energy reserves. Some students may manage a short physical activity, but not an activity that requires stamina. The student needs to be able to recognize when she/he is experiencing the onset of fatigue, inform the teacher and must stop and rest. The student might want to participate, but failure to stop and rest at the onset of increased fatigue can cause a serious relapse of symptoms. Students with ME/CFS should never be pressured to push themselves to their limits.
I think it is a pity did last suggestion seems to be focused on the severely affected. If somebody is only getting to some of the classes for the subjects they are taking, there is a good chance they would benefit from some individual tuition at home or distance learning. Some families might be able to afford is privately but a lot would not.Educational Accommodations
Students may need a personalized school schedule. The following accommodations can be helpful:
In the school:
• A single point of contact for teachers.
• A shortened day/week, the student might need to come in late, leave early, and/or attend school for only 2 or 3 days a week.
• A reduction in course load and flexible scheduling where only classes in selected subjects are attended.
• A quiet place for the student to rest if fatigue is evident to the student or the teacher.
• Use of the elevator to access different floors.
• Exemption from, or modification of, the physical education program.
• Provide homebound instruction or “Distance Education” for students who are partly or completely homebound.