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    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.

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Adopt a School Nurse

Messages
10,157
I recently heard about this project. Very interesting and could be worthy of a donation or two.

There is increasing awareness of ME/CFS in children and adolescents. It is more common in children over 10 than in younger children, though it can affect children as young as 5. 13% of youth who get Infectious Mononucleosis go on to develop ME/CFS. This illness commonly persists for many years. There is no known cure. Because it is not well known or understood by most doctors, it is thought that over 80% of people with ME/CFS are undiagnosed or misdiagnosed.

We have developed a 98 page manual specifically for school nurses. The manual will help to identify this serious illness among a student population, and while there is no known cure, we CAN establish a recovery protocol that could prevent a lifetime of disease.

It is immensely difficult for adults to grasp even a rudimentary knowledge of this disease and a task that is multiplied tenfold when it affects children. We are literally charting new ground and ask for your help.

http://www.immunedysfunction.org/pediatric.html
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The manual will help to identify this serious illness among a student population, and while there is no known cure, we CAN establish a recovery protocol that could prevent a lifetime of disease.

Now that part concerns me. It has me wondering if GET is the recommendation in their manual? (Im having too much trouble with my connection to load up the links properly to try to find out). I couldnt support this unless I knew it wasnt. I love the idea thou to educate school nurses on ME/CFS. Ive read in the past that ME/CFS is the top cause of long term school absence as far as medical problems go.
 
Messages
10,157
Now that part concerns me. It has me wondering if GET is the recommendation in their manual? (Im having too much trouble with my connection to load up the links properly to try to find out). I couldnt support this unless I knew it wasnt. I love the idea thou to educate school nurses on ME/CFS. Ive read in the past that ME/CFS is the top cause of long term school absence as far as medical problems go.

They are doing a lot of good work with this. This is a first as far as I can tell. Why dismiss something out of hand without even looking at the information. This is a bunch on well known ME/CFS doctors trying to get the word out to schools. Unfortunately, he donations have been dismal. If I were still a practicing RN, I would embrace this project and try to educate as many schools as possible. Children and adolescents are know to have a better recovery rate, educating and catching the issues early could only help.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
They are doing a lot of good work with this. This is a first as far as I can tell. Why dismiss something out of hand without even looking at the information. This is a bunch on well known ME/CFS doctors trying to get the word out to schools. Unfortunately, he donations have been dismal. If I were still a practicing RN, I would embrace this project and try to educate as many schools as possible. Children and adolescents are know to have a better recovery rate, educating and catching the issues early could only help.

im not dismissing but Im just saying I couldnt support something like this without knowing this (if GET is being recommended or not to these) as I wouldnt want to be responsible for helping anything which could lead to harm.

This (people not knowing if that is going to be what is recommended in the manual or not), may be why they arent managing to get much in the way of donations from the ME/CFS community .. as educating school nurses is a great idea.

educating and catching the issues early could only help

all may depend on what kind of "educating" they get about the illness. How they plan to help the child? What is their recommedations? We cant assume they arent recommending GET unless that is clear somewhere there. Those new to this illness are the most vulnerable ME/CFS people esp if children.
 
Messages
10,157
From what I have read, they recognize that each child has unique needs and a school plan needs to be tailored to those needs. Any interventions are not tailored to GET at all, unless I am reading the wrong information, which I don't think I am. I have a daughter with Special Needs and all interventions were tailored to her needs as a unique student. This what they are doing here - this is David Bell, Ken Friedman and others making these recommendations.

im not dismissing but Im just saying I couldnt support something like this without knowing this (if GET is being recommended or not to these) as I wouldnt want to be responsible for helping anything which could lead to harm.

Really why post something like you did without even reading about it. It's this kind of negativity that leads people into not even investigating and supporting. This is a brand new initiative. Maybe there are things to iron out, but children deserve the best interventions out there and I can tell a school nurse would know crap about ME/CFS unless they are given specific information. This is a chance for them to do so.

all may depend on what kind of "educating" they get about the illness. How they plan to help the child? What is their recommedations?

Why don't you look up their recommendations before posting that you can't support it. This is not the way these non-profits get donations.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Thanks for posting, Kina. It seems like an interesting project.
Just reposting the links below, to encourage people to have a look at them.

You can read about the project and donate, at these links:
http://www.immunedysfunction.org/pediatric.html
https://www.indiegogo.com/projects/adopt-a-school-nurse

I can't find the full text of the document, but this is the table of contents:
A Manual for School Nurses - Table of Contents said:
ME/CFS
A Manual for School Nurses


Table of Contents:

Evaluating CFIDS: A Checklist for School Nurses by David S. Bell, MD

The ABC’s of CFS by Kenneth J. Friedman, Ph.D.

Adolescents with ME/CFS in the School Setting by Barbara B. Comerford, Esq.

One Families Nightmare by Mary O’Connor Prologue by Charles W. Lapp, M.D.

Setting Limits: Teaching a Child with CFIDS to Take Responsibility By Mary Robinson

Educating the Child with CFS by Shanon McQuown

Chronic Fatigue Syndrome in Children and Adolesents by Rosemary Underhill, MB BS

Tips for Classroom Teachers of Young People with CFIDS By Kate Anderson, M.Ed.

What Children with CFIDS Need & What Adults Can Do to Help Meet Those Needs
presentation by Lynn Vanderzalm

Recognizing and Assisting Students with CFS by Dr. Kenneth Friedman and Rosemary Underhill

Parents Share Ideas For Educational Planning By Mary Robinson, MS Ed

Slow and Steady Wins the Race A Kid’s Guide to Surviving and Succeeding in School With CFS & FMS

CFIDS Profiles: Sharon Walk

Marissa’s Story

Brian’s Story: A Family Transformed


And this is the promotional video:

 

aimossy

Senior Member
Messages
1,106
This is a really clever idea for awareness raising in general and would be nice to see it happening as a doctor/ health professional awareness as well across all countries.
I have used my money up for this year @Kina :( but if somehow remember this next year will try to make a donation. School nurses can make such a difference for kids and parents going through hell, especially when the school doesn't understand why your child isn't at school enough and it gets negatively perceived. I mean, that's not the only thing obviously of course but a cause of massive strain on top of all the struggle and coping with the illness as a family.