Sunday, July 02, 2017

New ME/CFS Pediatric Primer Published!

Kids & teens with ME/CFS speak up in DC in 2011
Get your horns and confetti ready - it's time to celebrate! Dr. Peter Rowe, renowned pediatric ME/CFS and OI expert at Johns Hopkins, has teamed up with his colleagues around the world to write comprehensive guidelines on the diagnosis and treatment of ME/CFS in children and teens. This ME/CFS Pediatric Primer has been published in a mainstream medical journal, Frontiers in Pediatrics, where it will be seen by doctors all over the world. This is a HUGE step forward for all of us and should go a long way toward educating both pediatricians and primary care doctors about the care of kids with ME/CFS (and adult patients, too).

The full title of the paper is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer and you can read its full text and share it with your doctor(s) at that link.

The primer itself describes its purpose:
"While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents."

Wonderful! It is a long document, with plenty of detail on both diagnosis and treatment. It explains that few studies have been done on children with ME/CFS but that the guidance in the document is based on what research there is, plus the extensive clinical experience of the authors. It mentions the presence of orthostatic intolerance right in the introduction! It also emphasizes several times that ME/CFS is a physical illness and not a psychological condition and explains over and over that some children and teens may be homebound, in a wheelchair, or even bedridden from ME/CFS. And, of course, it explains in detail WHY you can't "cure" ME/CFS with exercise (GET) or cognitive behavioral therapy (CBT) and why it may be harmful to patients to try.

The primer includes sections on:
  • Etiology and Pathophysiology (that is, how the disease starts, what keeps it going, and its effects on various systems in the body)
  • Adolescent Development
  • Clinical Diagnosis (which includes a very helpful worksheet for doctors to aid in recognizing ME/CFS in kids)
  • Management/Treatment
  • Co-Morbid Conditions (including OI, EDS, food intolerances & allergies & more)
  • Areas of Special Clinical Concern (includes management of severely affected patients)
  • The School System
  • Appendices A through G (which include Fact Sheets for schools, sample doctor's note for school, a more complete discussion of OI, and more)
Overall, it is an excellent document and will provide far better care of pediatric patients than what is currently available.

However, I would have liked to see mention of or more detail on the following treatments to further help young patients (links provided explain more, including how these treatments have helped my son and I):
  • Treating sleep dysfunction - There is a section on sleep dysfunction but no mention of the typical mechanism behind it in ME/CFS (light sleep, mainly in Stages 1 & 2 without enough deep Stage 3 & 4 sleep caused by endocrine dysfunction that causes disruption in normal hormones that provide deep, refreshing sleep). There is a small table listing medications that might help in treating sleep dysfunction, and it does include tricyclic antidrepressants or TCAs (when used in small doses at bedtime, these lose their antidepressant properties but help to increase the hormones necessary for normal, deep sleep). However, the table lists amitriptyline, which many patients including myself find too sedating, and makes no mention of trazodone and nortriptyline, the two milder TCAs that are more commonly used to to effectively treat sleep dysfunction in ME/CFS, including in kids and teens. These two meds have worked beautifully for my son and I for over 12 years and for many other young patients.
  • Treating immune system dysfunction - There is a brief section on this critical topic, but the only treatment mentioned is IVIG, which is very expensive and sometimes difficult for the patient and not always approved by insurance. There is no mention at all of low-dose naltrexone (which I know Dr. Rowe prescribes for some patients) or inosine, two very safe and very cheap approaches to helping to normalize or balance the immune system that have helped my son and I immensely. 
  • Looking for and treating underlying infections - There is a brief mention that antivirals are used sometimes to treat adult ME/CFS patients and that there have been no studies on the use of antivirals for children. The section on co-morbid conditions also mentions the possibility of infections, like Lyme disease. Often, though, underlying infections are a critical component of ME/CFS and diagnosing and treating them can bring dramatic improvements. In people with ME/CFS, the immune system dysfunction that is part of our disease can cause old, dormant infections (that are harmless to most people) to reactivate. The primer does explain that mono (caused by EBV) is a common trigger for ME/CFS in kids and teens, but there is no mention of the fact that treating that initial case of mono with antivirals within the first few years of ME/CFS can bring improvement or even full recovery. And many people with ME/CFS discover that they have tick-borne infections, like Lyme disease, often many years after fruitless treatment of their ME/CFS (my son ended up having 3 tick-borne infections, in addition to his ME/CFS, that we missed for over three years). Experience has shown that searching for and treating these kinds of underlying infections can bring dramatic improvement in patients and return to a more normal life or even full recovery.
  • The prevalence of food intolerances - Dr. Rowe himself authored a study that found that a full 30% of his young ME/CFS patients in the study had developed an intolerance to dairy, so I was surprised that this statistic - backed up by a study - was not included in the primer. There is some vague mention of food intolerances in the section on co-morbid conditions and the section on GI symptoms, but the section on Dietary Management doesn't recommend eliminating common allergic foods on a trial basis. Eliminating diary almost completely eliminated GI symptoms for my son and I. From what is written here, I can imagine kids being put through all kinds of invasive testing for co-morbid conditions when they really just need to eliminate dairy or gluten or other common allergens from their diet.
  • Treating methylation issues - Oddly, one of the references at the end of the primer is to a study on the presence of genetic methylation problems in ME/CFS patients, but there is no mention in the body of the document of methylation at all. There are a few mentions of B12 supplementation (B12 is critical to the methylation process), but no mention of folate or other aspects of methylation. Treating methylation has helped my son and I very much, and I know this approach has helped many other young patients in our Parents group on Facebook.
So, I am a little disappointed that the treatment section either doesn't mention or doesn't include details of all of these treatments that have been crucial in improving the overall condition of my son (and myself) as well as countless other pediatric patients (I lead an online group with over 600 parents from all over the globe, so I hear about what works and what doesn't for their kids). I do understand that the doctors who wrote this document were trying to base their recommendations on studies and were focused on doing no harm, but there aren't very many studies on treatments for ME/CFS (pediatric or adult), and they stated up front that their advice was based in part on clinical experience - and I know patients of Dr. Rowe's that have benefited from everything I have listed here.

All that said, my criticisms are minor. This document provides well thought-out guidelines for any doctor treating pediatric ME/CFS patients and a good starting point. Just the inclusion and explanation of Orthostatic Intolerance alone will provide very helpful information to doctors treating kids with ME/CFS, as treating OI often brings dramatic improvements, especially in kids.

This primer is certainly a giant leap forward from where we are today, with most doctors not even realizing that ME/CFS is a serious disease that can completely incapacitate kids and thinking there are no effective treatments (or worse, thinking that forced exercise is the way to treat ME/CFS).

A big thank you to Dr. Rowe and his team for once again blazing trails for pediatric ME/CFS!


  1. Anonymous11:48 AM

    Most of the authors of the primer have decades of extensive clinical experience dealing with ME. Their experience seems to indicate that their clinical experience and the available literature, the evidence base for what has worked for you and your son doesn’t seem to have a strong supporting evidence base for them to recommend many of the things your family seems to have found helpful.

    p. 4 indicates the authors don't feel anti-viral treatment has strong evidence to support its use and no studies have been done in young patients.
    Also on p. 4 re immune dysfunction - as the authors point out there are few immunological studies on young people, and many of the immune responses in patients are not unique to ME so likely would not fall under the scope of this primer.

    p. 23 talks quite clearly about food intolerances and eliminations trials.

    1. Those are all excellent points, and I completely understand where the authors were coming from. I'm not criticizing the primer...which is a fabulous document and long overdue! Believe me, all us parents are celebrating!!

      Rather, I was just trying to provide information for my readers on additional treatments beyond what the primer has included that have been found helpful for many kids & teens. I did not base those additional treatments on just my son and I. I run two support groups - one locally with about 25 families who have kids with ME/CFS and one online with over 600 parents from around the globe whose kids have ME/CFS - so these are all things that have worked for many, many kids and teens. And, in fact, I know many parents locally whose kids see Dr. Rowe (and he has helped us over the years by phone and e-mail), so I know that he uses these approaches with his young patients, too.

      Hopefully, this primer and other efforts will encourage more research on kids & teens in the future so that these treatments can be officially accepted.

      Thanks very much for taking the time to leave a comment - I appreciate that and your careful reading of the primer - hopefully, pediatricians and family doctors around the world will read it as completely!


    2. Anonymous2:20 PM

      I suspect his use of those things may have to do with treatment of comorbidities rather than using them to manage symptoms arising from ME.