Phenotypes of ME/CFS In Children and Younger People

I found some information recently regarding phenotypes of ME/CFS in children and young people.  Phenotypes are differentiating sets of traits or characteristics. Thanks to ProHealth for the following information!

Objective: To investigate the heterogeneity of chronic fatigue syndrome (CFS/ME) in children and young people.

Setting: Regional specialist CFS/ME service.

Patients: Children and young people aged under 19 years old.

Methods: Exploratory factor analysis was performed on symptoms present at assessment in 333 children and young people with CFS/ME.

Linear and logistic regression analysis of data from self completed assessment forms was used to explore the associations between the retained factors and sex, age, length of illness, depression, anxiety and markers of severity (fatigue, physical function, pain and school attendance).

Results:
Three phenotypes were identified using factor analysis:

• Musculoskeletal (Factor 1) had loadings on muscle and joint pain and hypersensitivity to touch, and was associated with worse
- Fatigue (regression coefficient 0.47, 95% CI 0.25, 0.68, p <0.001),
- Physical function (regression coefficient -0.52, 95% CI -0.83, -0.22, p=0.001)
- And pain.

• Factor 2 (Migraine) loaded on noise and light hypersensitivity, headaches, nausea, abdominal pain and dizziness and was most strongly associated with physical function and pain.

• Sore throat phenotype (Factor 3) had loadings on sore throat and tender lymph nodes and was not associated with fatigue or pain.

There was no evidence that phenotypes were associated with age, length of illness, or symptoms of depression (regression coefficient for association of depression with Musculoskeletal pain -0.02, 95% CI -0.27, 0.23, p= 0.87).

The Migraine phenotype was associated with anxiety (0.40, 95% CI 0.06, 0.74, p=0.02).

Implications: CFS/ME is heterogeneous in children with 3 phenotypes at presentation that:

• Are differentially associated with severity

• And are unlikely to be due to age or length of illness.

 

Source

Mono Linked to ME/CFS In Teenagers

A recent study by Dr. Ben Z. Katz of Northwestern University Feinberg School of Medicine in Chicago has discovered that teenagers who develop infectious mononucleosis may be at risk for ME/CFS. According to Dr. Katz, previous studies have shown that one in ten adults with acute mono will develop ME/CFS. Mono and the link to ME/CFS in teens has not been studied as much, however.

In this study, the researchers monitored 301 adolescents with mono. Six months after their diagnosis, 24% (70 patients) had not made a full recovery & 13% (39 patients) were diagnosed with ME/CFS.

At the 12-month follow up visit, 7% had ME/CFS and at the 24-month follow up, ME/CFS persisted in 4% of the adolescents. That is approximately 20 times higher than in the general teenage population. All of the 13 patients who still had ME/CFS at the 24-month follow up were female and an average worsening of fatigue was reported at 12 months.

The use of steroids for treating the mono at the time of diagnosis did not affect the risk of patients developing ME/CFS. Dr. Katz says he and his colleagues are now trying to figure out what differentiates adolescents who recover from mono from those who don’t.

Source

How Adolescents With ME/CFS Perceive Their Social Environment

For years there was concern over�the CDC having the same ME/CFS diagnostic criteria for both children and adults.� In 2006, a pediatric case definition was created.� To read the pediatric case definition/criteria for ME/CFS, read my post Pediatric Case Definition for Chronic Fatigue Syndrome.

Even with the pediatric case definition, there is still a lot of confusion and doubt in school teachers and other adults who are not aware of the symptoms of the illness.� To provide more insight into pediatric ME/CFS, 27 children with the illness were interviewed via questionnaires.� The results of the questionnaires revealed that:

• It takes up to 18 months for children to receive a proper diagnosis of ME/CFS.
• Symptoms are similar to those of adults and teenagers with CFS tend to have stomach aches.
• Most of the�children with ME/CFS�experienced�problems at their school due to their illness.�
• Nearly every child interviewed had given up their activities due to the ME/CFS.
• ME/CFS children would face negative responses when they tried to engage in extracirricular activities.

Source

England Receives Funding To Study ME/CFS In Children

The Clinician Scientist Fellowship & Dr Esther Crawley, Senior Clinical Lecturer at the Centre for Child and Adolescent Health at the University of Bristol has received �730,000 in research funding from the National Institute of Health Research for ground-breaking research for pediatric ME/CFS. The grant will be used to research the cause, treatment and prevention of ME/CFS in children, which is an area of Chronic Fatigue Syndrome that has been under researched.

Pediatric ME/CFS is a common childhood illness that can be totally devestating for those suffering and is the most common reason for children who have long-term absences from school.

Dr Crawley, who is also Consultant Pediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, says of this research:

�I want to answer the many unresolved questions about the best ways to treat and manage the patients for whom I am responsible.� This research is crucial to help us to understand the risk factors and prevalence of CFS/ME in children, and to give us an improved understanding of the most effective ways to treat and prevent the development of this condition.�

Dr. Crawley’s research will consist of three parts:�

• First, Dr. Crawley will investigate the cause(s) of pediatric ME/CFS.� She will use information from a 1990’s study from the University of Bristol’s Children to see how many had the illness, the children’s ages, and the factors that predict CFS.
• Secondly, Dr. Crawley will work to identify effective treatments for pediatric ME/CFS. �She will examine the�results from�treatments CFS children�have had from different types of services across England to understand which are most effective in providing treatment.
• Last but not least, Dr. Crawley will develop a school-based early intervention tool to prevent�CFS from developing in children.� �Part of her plan is to develop and test an education package for those children who are missing school due to fatigue to see if CFS can be prevented.�� Crawley will measure the economic impact of school absences due to fatigue.�

The project wil begin this month and will last for five years.�

To read more about pediatric ME/CFS on Fighting Fatigue, click here.

For the pediatric case definition for ME/CFS, click here.

Pediatric CFS Article by the New Jersey Education Association

Pediatric CFS is a subject that needs more attention and awareness in America.  I was thrilled when I saw the article, Recognizing and Assisting Students with CFS. 

I volunteer at my son’s elementary school and I am going to print out this PDF article and take it to the school with me this week to be passed on to the higher-ups in the school district.

The article explains in easy to understand terms what CFS is, how it affects children and why the illness needs to be taken seriously.  It talks about what signs to look for in children and what a teacher and the school can to do accommodate students with CFS.

I would recommend everyone who has children in school printing out this article and sending it to your child’s teacher and to the school adminstration.

Pediatric Case Definition for Chronic Fatigue Syndrome

The researchers at DePaul University have developed a pediatric case definition for Chronic Fatigue Syndrome for children and adolescents. Because the criteria put in place by the CDC is for adults with CFS, researchers were finding that children were not properly being diagnosed with the illness.

In order for a diagnosis of CFS/ME to be made in a child, the child must report fatigue as well as classic CFS/ME symptoms in each of the following categories. They must have experienced these symptoms for at least 3 months. In addition to frequency, their severity rating must be a 4 or above. You can read the complete report on the pediatric case definition of CFS and severity ratings by clicking here.

The severity scale is as follows for symptoms (you can read the questionnaire with all of the symptoms on page 6 at the above link).

1 – 3 = Hardly ever, or no problem, little problem

4 – 6 = Half the time, or moderate problem

7 = Always, or big problem

Criteria:

Fatigue: -

- Fatigue that causes child to reduce activities to avoid feeling even more tired and a rating of half the time, or moderate problem for fatigue/extreme tiredness.

Post-exertional Malaise:

- Feeling worse after doing activities that require physical or mental effort.
- Being physically active, such as using stairs, walking, playing sports, doing chores, getting dressed, makes the child much more tired than usual or more tired than usual by the end of the day.

Sleep:

- At least one of the following:

- Feeling tired after waking up in the morning
- Need to nap daily
- Problems falling asleep
- Problems staying asleep

Pain:

- At least one symptom from Myofascial pain, Joint pain, Abdominal pain, or Head pain

- Pain or aching in muscles
- Muscle twitches
- Pain/stiffness/tenderness in more than one joint without redness and/or swelling
- Eye pain
- Vomiting
- Nausea
- Chest pain or heartburn
- Upset stomach
- Abdomen/stomach pain
- Ringing in ears
- Headaches

Neurocognition:

- At least two of the following:

- Problems remembering things
- Difficulty paying attention for long time periods
- Difficulty finding the right words to say
- Difficulty understanding things
- Can only focus on one thing at a time
- Frequently lose train of thought
- Slowness of thought
- Forgetfulness or absent-mindedness
- Recent trouble with math or numbers

At least one symptom from two of the following three categories:

- Autonomic Manifestations:

- Feel unsteady on feet, like you may fall
- Shortness of breath, trouble catching breath
- Dizziness
- Irregular heart beats

- Neuroendocrine Manifestations:

- Losing or gaining weight
- Not wanting to eat
- Sweating hands
- Night sweats
- Feel chills or shivers
- Feeling hot or cold
- Feeling like you have a high temperature
- Feeling that your temperature is low

- Immune Manifestations:

- Sore throat
- Tender/sore lymph nodes
- Fever and sweats
- Some smells, foods, chemicals makes you feel sick

Children Who Suffer From CFIDS

King 5 News wrote an article on a 15-year-old girl who suffers from CFIDS.  I know it is hard for all of us who have CFIDS, but it has to be especially difficult on teenagers.  Your teen years are supposed to be full of fun, energy and excitement.  It’s a shame when people get this illness so young as in this story.

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