12 Days in May Advocacy Project: Day II – the Children

Posted by Cort Johnson

Children are the most unfortunate recipients of ME/CFS. For many years they were largely ignored subset but the last couple of years have seen a small spurt in studies exploring the costs and course of the illness in adolescents and children with CFS. While prevalence rates are still extremely sketchy a picture of the illness is beginning to appear in the research literature. Check out info on children with ME/CFS below and some resources but first – the Action! 

SUPPORT THE SPEAK UP ABOUT ME PROJECT

The ‘Speak Up About ME!’Project https://www.speakupaboutme.org/- Denise Lopez-Majano , the mother of two ill teens, has gotten together an action for young people with ME/CFS at the CFSAC meeting on May 11th. The young people will wear shirts stating how long they’ve been ill . Then they will visit their Congressional Representatives to advocate for increased funding , providing them with individualized cards with the young person’s name and photo on the front, along with the phrase “Thank You for Remembering ME.” The back of the card has bullet points about ME/CFS, including its negative economic impact. This is the kind of creative activism that we need. 

You can support this project in a number of ways.

• Check out the website
• Document – Denise will also present the CFSAC Committee with a list of people who became ill when they were young and how long they’ve been ill. If you or your kids became ill before age 21, contact Denise with the following information: Name of patient / Age at onset of ME/CFS / Age at diagnosis / Current age (as of 5/11). She will include your information in her own testimony at the meeting.
• Buy a Cool T-shirt – Whether you can attend in person or not, you can order a t-shirt! MCWPA Young People T-Shirt for CFSACMCWPA Young People T-Shirt for CFSAC. The young participants will wear identical shirts, emblazoned with the project title, Speak Up About ME, to be purchased through Zazzle (MCWPA Young People t-shirt for CFSAC) . Each shirt will be customized with a slogan that shows how much of the patient’s life has already been spent ill (For example, my son Jamie’s shirt will announce “sick 6 of 16 years”)
• Donate to help defray the costs
• Publicize the project through your own blog or Facebook page (e-mail Denise for a ready-made PR announcement or feel free to link to this post).

Denise has done a great job getting this action together and I think we will hear from her more in the future.

The event is being supported by a coalition of ME/CFS organizations including P.A.N.D.O.R.A., the Rocky Mountain CFS and FM Association, the Vermont CFIDS Association, the ME-CFS Worldwide Patient Alliance, Phoenix Rising, CFS Solutions of West MI, CFOG (Chronic Fatigue Syndrome and Fibromyalgia Organization of Georgia) of Georgia and Facebook’s cause-project page.

ADOLESCENTS WITH ME/CFS – WHAT DO RESEARCHERS KNOW?

High Costs – A recent Dutch paper which found that ME/CFS results in “extreme disability associated with considerable school absence” was highlighted in a Reuters article titled “Chronic Fatigue Rare but Serious in Teens” In that article a UK researcher outlined the costs not only to the teenager but sometimes to the family as well. 

“Missing substantial amounts of school can potentially have profound effects on their educational, social and emotional development. It also has potentially serious impact on the family. If the child is off school, one parent — usually the mother — usually has to stay at home to care for them, and often give up their job altogether..”

A 2008 UK study substantiated these overall findings with its findings of high rates of disability, low levels of school attendance and high level of fatigue, anxiety and pain in children under 12 with ME/CFS, and a similar illness presentation to that found in adolescents and adults.

A Kennedy UK study found, in a severely affected cohort( with high rates of infectious onset), greatly impaired quality of life scores which were significantly lower than form adolescents with type I diabetes or asthma.

A CDC report states that pediatric patients are typically teenage females with infectious onset who typically miss a great deal of school but that they have a better chance of recovery than adults – something that both Dr. Cheney and Dr. Dantini assert as well which brings us to prognosis.

Some Hope. Longterm studies are rare. In 2001, however, Dr. Bell’s 13 year follow-up of 35 children and adolescents (https://www.co-cure.org/Bell.pdf ) from the Lyndonville cohort presented some basis for hope. Approximately 80% were reported to have a ‘satisfactory outcome’; that is, they considered themselves ‘well’ even if they still had lingering symptoms.’. Thirty seven percent reported that they considered themselves fully recovered, 42% considered themselves ‘well’ but not recovered and 11% considered themselves chronically ill and 9% considered themselves sicker.

Perhaps not surprisingly those who were the most ill during adolescence and missed the most school were most likely to still be ill. Even in this group, though, there was some reason to at least hope for improvement; of the 8 who missed more than 2 years of school most made improvement with 3 feeling they “never recovered completely but feel pretty well,” and 3 who felt they were “recovered somewhat but remain ill. (On the other hand, Bell reported 71% of those who never missed school felt they recovered completely.

Gradual recovery – Most of those who fully recovered took from 2-4 years to do so; one, however, became fully recovered 9 ½ years after illness. None could chart the date of recovery – for all of them recovery appeared to be a slow and gradual process.

Some other studies bear out Bell’s findings of at least significant recovery in a substantial portion of young people with ME/CFS. Krilov et. al’s study, found that, 1-4 years after diagnosis 43% of parents considering their child “cured,” 52% considering their child “improved,” and 5% considering their child unchanged. A recent Dutch study found that about 2 years later that about 50% of Dutch adolescents had “near complete improvement of symptoms” with about 50% not experiencing symptom improvement. (Rates of class participation amongst the entire group, however, were low, with 33% of classes missed. )

The large 2010 Taylor study found that over the first year 30% of adolescents with CFS after infectious had recovered and 30% of the remaining cohort recovered after 2 years. Fatigue, in general, appeared to peak about a year into the disorder. Another Taylor study found similar rates of physical activity in adolescents with CFS but increased pain and fatigue – suggesting that the teens were trying to stay up with their peers but paying for it in increased symptoms.

It appears that a large subset of adolescents/children do at least substantially improve 1-4 years after being diagnosed with the illness. Of course that does leave a substantial group of adolescents/children who do not….

Pathophysiology – at least three research groups; the Freeman /Stewart groups studying orthostatic intolerance, the Wyller group focusing on autonomic nervous system functioning and the Taylor group focusing on infectious mononucleosis are focusing mostly on adolescents.

A Kennedy UK study found adolescents with ME/CFS had similar oxidative stress profiles as adults but (thankfully) did not yet display increased rates of arterial stiffness. Wyller’s studies in adolescents have uncovered alterations in hormonal systems that control osmolality and blood volume – suggesting that low blood volume may be a key player in adolescent ME/CFS. Wyller has also found blood pressure and heart rate abnormalities. Freeman et al have found numerous irregularities in autonomic nervous system functioning and Stewart has found three different types of ANS alterations in his adolescent patients. Taylor recently found a similar pattern of reduced oxygen consumption during exercise as is found in adults.

Resources for Children

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