• 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 (FM), 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.

Pediatric Primer

Dolphin

Senior Member
Messages
17,567
Since many pediatric patients with ME/CFS respond to much lower than standard doses of medication (1/2 or 1/4 of the usual dose), the dosage should start low and be increased slowly.
Makes sense. I remember when the Barts CFS service (presumably Peter White) objected to such a suggestion in the draft NICE guidelines in 2006
 

Dolphin

Senior Member
Messages
17,567
Adolescent patients are encouraged to propose a personal, optimal balance of social, physical, and academic activities (and include something pleasurable outside of the home).
Nice to see patients being given permission to use energy on pleasurable activities rather than just on academic activities.
 

Dolphin

Senior Member
Messages
17,567
Young people often expand their activity level as they start to improve, preferring to tolerate some symptoms rather than remain on restricted activities so as to experience less fatigue. Thus, measuring improvement by asking solely about fatigue can underestimate progress. Functional improvement can be judged by determining how much activity it takes to provoke post-exertional worsening of symptoms.
This is in contrast to some of what the biopsychosocial school write which sort of makes out that patients are super wimps who are not willing to put up with any symptoms.
 

Dolphin

Senior Member
Messages
17,567
Telephone or Skype contact can serve the same purpose for those who are more severely affected and unable to travel, or those who are geographically remote.
Makes sense
 

Dolphin

Senior Member
Messages
17,567
The Acute Stage of ME/CFS

In the early, acute, febrile stage of ME/CFS, the diagnosis can be uncertain and other causes of fever need to be considered. Adequate rest and activity management are the mainstays of treatment. Premature resumption of activity or attempts to return to school can result in a relapse or increased severity of symptoms.
 

Dolphin

Senior Member
Messages
17,567
Hypersomnia (sleeping for up to 20 h a day) can occur in the early stages of the illness and can persist for weeks and occasionally months. Young people who sleep for more than 12 h at a time can develop dehydration. During wakeful periods, the young patient’s parents/caregivers need to ensure adequate hydration and nourishment. When oral hydration and nourishment are inadequate, tube feeding is necessary. If hypersomnia persists for months, the young person should be evaluated by a sleep specialist, preferably one who is familiar with ME/CFS.
Good that the possibility of hypersomnia is mentioned
 

Dolphin

Senior Member
Messages
17,567
JAMA:

"Although adverse symptoms reported by patients taking hydrocortisone were mild, suppression of adrenal glucocorticoid responsiveness was documented in 12 patients who received it vs none in the placebo group"

This is evidence that ME (at least I'm assuming those who participated did have ME) patients can and do have adverse/unusual reactions to medications which, (and I'm thinking of the NICE surveillance here) often gets disputed on the grounds of no evidence.
I'm not convinced this is evidence of an abnormal reaction. I think quite a lot of people have their adrenal function suppressed by moderate dosages of cortisone.
 

Dolphin

Senior Member
Messages
17,567
Chronic, daily headaches, which can fluctuate in severity from week-to-week, are common. If they are episodic, a diagnosis of migraine should be considered. Possible triggers include inadequate sleep, stress, skipped meals, specific foods and supplements (including, but not limited to chocolates, nuts, and aspartame). Initial intervention focuses on avoiding the common triggers. Migraine-prevention drugs are worth a trial for both episodic and non-episodic chronic, daily headaches. Commonly used medications are shown in Table 8. Beta blockers can help headaches that are associated with OI (see Orthostatic Intolerance).
 

Dolphin

Senior Member
Messages
17,567
Pain:
fped-05-00121-t009.jpg
Myalgia and pain from co-morbid fibromyalgia can be found in from 10 to 30% of pediatric patients with ME/CFS and is less common than in adults (98). Abdominal pain and Nausea are common (98, 99). Abdominal hyperalgesia may also occur. Gastrointestinal motility disorders can be present, especially in patients with OI.

98. Bell DS, Bell KM, Cheney PR. Primary juvenile fibromyalgia syndrome and chronic fatigue syndrome in adolescents. Clin Infect Dis (1994) 18(Suppl1):S21–3. doi:10.1093/clinids/18.Supplement_1.S21
The wording is slightly unclear but I would be surprised if only 10 to 30% of paediatric patients had myalgia. The percentages in adults are much higher. Myalgia was arguably my chief symptom as a teenager.
 
Last edited:

Dolphin

Senior Member
Messages
17,567
Helpful, non-pharmacological remediation for pain includes: pacing of activity to avoid flare-ups (see Fatigue, Post-Exertional Symptoms, Exercise Intolerance), hot or cold packs for treatment of tender points, warm baths, muscle liniments, physical therapy, transcutaneous electrical nerve stimulation, acupuncture, massage, yoga or Tai Chi, biofeedback, and mindfulness-based stress reduction techniques. These interventions might not be effective in some patients and might be poorly tolerated in others.
I'm sceptical about some of these helping pain so good to see the last sentence.
 

Denise

Senior Member
Messages
1,095
Okay - here's another inconsistency in the primer because the diagnostic worksheet (p.7) says "Rarely is pain absent"

Based on the reference, I think the quote about pain in 10-30% of pediatric patients is saying that fibromyalgia as a co-morbidity occurs in just 10-30% of young patients. But as @Dolphin says, the wording is unclear.
 

Dolphin

Senior Member
Messages
17,567
Activity and Exercise

Activities of daily living, education and social contact related activities can comprise a tolerable amount of energy expenditure for some patients, but these activities can comprise an excessive amount of activity for others. Adding an exercise program to the schedule of a young person who can barely manage to cope with limited educational activities can be counterproductive. Exercise has been promoted as therapeutic in patients with ME/CFS, but many patients drop out of exercise studies because exercise clearly made them worse (101). Some individuals with ME/CFS mistakenly over-exercise in an attempt to reduce fatigue and then incur post-exertional relapse. No studies have shown that exercise can produce a cure for ME/CFS.
A lot of good points here.
 

Dolphin

Senior Member
Messages
17,567
Occasionally an excess of caution in young patients and/or their care givers can result in too much rest. Prolonged periods of complete bed rest should be avoided except in the most severely affected patients. Studies in adults have shown that 2 weeks of complete bed rest can be followed by a substantial reduction in plasma volume, and by OI (102). Striking the right balance between rest and activity while avoiding post-exertional symptoms requires trial and error.

However, for some patients with less severe ME/CFS, or during a remission, a suitable exercise program can improve function and provide some enjoyment.
Evidence it improves function = ?

Any exercise program should not take priority over activities of daily living, education and socialization. Special care also needs to be taken to ensure that exercise is not advanced too rapidly or too soon, as by definition, excessive exercise can exacerbate ME/CFS symptoms.
Good
 

Dolphin

Senior Member
Messages
17,567
Birthing the Young Persons ME/CFS Primer

Kenneth J. Friedman, Ph.D.

It was the next to the last day of a short trip to the east coast of Florida. The weather had not been cooperating. No morning walks on the beach. But the forecast for the morning of June 2, 2011 held promise, and so my wife and I made plans to be on Dania Beach by 9 AM. The plan went smoothly with the ride to the beach under blue skies, a timely entrance into the parking lot, the purchase of 2 hours of parking at the kiosk and our sandals off with toes in the sand before 9:00 AM. My cell phone rang. It was Billie Moore, fellow Board Member of the New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association. She was extremely upset: her son, a victim of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, had died suddenly the day before. She had two requests of me: (1) obtain the information needed for the medical examiner to preserve her son’s tissues, for donation to a biobank, during the autopsy to be performed that morning, and (2) write a book to improve diagnosis and treatment of ME/CFS in children so that no parent would ever lose their child to this disease again.

The first order of business was to obtain the information needed to preserve Eric’s tissues for biobank donation. We turned away from the beach and walked back to the car. My wife drove as I worked the phone. Time was of the essence. I connected with Dr. Nancy Klimas at the start of her clinic day. She agreed to quickly get the necessary information to Billie Moore.

The other commitment would take longer. In June, 2011, we were one year into writing a diagnosis and treatment manual for ME/CFS in adults, under the auspices of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME). It would take another year to produce the first edition of that work, and another two years to produce the revision that addressed concerns expressed after publication of the initial offering. In April 2014, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Primer for Clinical Practitioners was put to bed. I, Dr. Alan Gurwitt and Dr. Rosemary Underhill set about organizing an international writing group of clinicians and researchers to write the companion piece for the diagnosis and management of ME/CFS in young persons. The group met for more than two years via biweekly conference calls, exchanging drafts and subsequent revisions by email. Text was accepted as final only when all agreed to it. To ensure complete coverage, we asked Dr. Faith Newton to submit material for an educational component, and Dr. Evan Spivack to submit material for dental considerations.

Once written, I did not want Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis and Management in Young People: A Primer to suffer the same fate as the adult primer: the U.S. federal government refused to cite or link to ME/CFS: A Primer for Clinical Practitioners because it had been self-published and had not undergone peer review. I requested that the authors of the young persons primer grant me time to identify a peer-reviewed journal willing to publish our monograph in its entirety while still permitting the later production of hard copies of the work as a monograph. We are extremely fortunate that Frontiers in Pediatrics accepted our complete manuscript, subjected it to peer review, and published it online. We are also fortunate that the Solve ME/CFS Initiative agreed to cover the cost of publishing our monograph in Frontiers in Pediatrics.

We are currently preparing a print version of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis and Management in Young People: A Primer. We will add a Table of Contents, an Index, and identify an on-demand publisher so that anyone who wishes to obtain a hard copy may do so at minimal cost. We are also making plans to aggressively market our young persons primer to appropriate healthcare organizations.

The loss of a child leaves an irreparable hole in the hearts and lives of the parents, described as “an aching limp” in the October 31, 2016 edition of the New York Times. (https://www.nytimes.com/2016/10/31/opinion/dealing-with-the-death-of-a-child.html) That essay asks how one goes on after the death of a child? “By thinking of the ones you save.” To the parents of Eric and Casey, and all the other parents of children who died because of ME/CFS, may the publication of this definitive work, intended to guide healthcare professionals in providing prompt diagnosis of the disease, and management of its symptoms, offer the solace of knowing that their children’s lives have wrought this work which will hopefully save the lives of others. To the healthcare providers who treat the young, know that in your practices you will encounter patients with ME/CFS. Their illness is real. May Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis and Management in Young People: A Primer provide you with the tools to efficiently reach diagnosis and effectively manage the symptoms of their illness. May this primer encourage healthcare professionals to support and encourage young people with ME/CFS to adjust to their new, altered lives, previously unimagined.
 

Dolphin

Senior Member
Messages
17,567
Pacing of Activities and the Energy Envelope

Young people with ME/CFS often do better when they (and their parents) learn to adapt their lifestyles to live within their capabilities, and pace or spread out their activities so that they can avoid a boom and bust cycle of over-activity on a given day followed by a “crash” the following day. Remaining as active as possible while avoiding post-exertional flare-ups delineates an optimal zone of activity termed the “energy envelope.” It has been shown in adults that fatigue severity declines when patients stay within their energy envelope (103).

Activities can be planned by the young patient over a weekly period. She/he should be encouraged to balance intellectual, social and physical activities, and to make a commitment to undertake segments of each component regularly. This allows the patient and family members to regain some control over their lives. It must be remembered that activity levels fluctuate from day-to-day and patients sometimes experience set-backs in their available energy reserves. Family members need to recognize that set-backs can occur and any activity plan needs to be flexible.
While CBT and graded exercise therapy can involve some pacing, the main proponents would be against the energy envelope model.
 

Dolphin

Senior Member
Messages
17,567
Recommendations for Improving Activity Levels

Guidelines for exercise in healthy, but sedentary young people are inappropriate for patients with ME/CFS, because strict adherence to these guidelines can cause post-exertional relapse.
Good

For some young patients, it might be necessary to first treat their OI and improve their ability to remain upright before any exercise can be adequately tolerated.
Interesting


Consultation with a physical therapist or rehabilitation specialist knowledgeable about ME/CFS is often helpful.
I'm not sure about this.