Article: M.A.D in May: the 12 Days of May ME/CFS Advocacy Project: Day II - Children's Day

Article: M.A.D in May: the 12 Days of May ME/CFS Advocacy Project: Day II - Childrens

You can view the page at http://forums.phoenixrising.me/content.php?416-M.A.D-in-May-12-Days-May-ME-CFS-Advocacy-Project-Childrens-day

 

Please support this project as you are able everyone!

Even if you didn't come down if ME/CFS as a child or don't care about pediatric ME/CFS, realize that HIV research got a huge boost from finally recognizing that HIV affected children and not only gay men, as initially thought. Kids pull heart strings and get sympathy votes.

Cort, the data on pediatric CFS recovery should be tempered with Dr. Bell's recent pediatric data at 25-yr. follow-up during which he mentions that the 80% recovery figure might be an overestimate: http://www.davidsbell.com/LynNewsV7N1.htm [scroll down]

a. Since the kids became ill at such a young age, they didn't have a baseline for "normal" health compared to adult who became ill.

b. An improvement in OI seemed to figure largely into kids saying they had "recovered." However, when probed, many still had to rest regularly and had severe fatigue and other symptoms.

Drs. Jason and Rowe both brought up these points at NIH and Dr. Bell has also expressed that unfortunately, people have run with the 80% figure. Hopefully, Dr. Bell reports on his cohort officially soon.

 

Thanks for this Cort! We appreciate it.

Please lend your support (support comes in many forms) to all of the young people!
Support the ones who travel to DC,
as well as the ones who are too sick to travel,
and the ones whose parent/caregiver couldn't take yet another day off from work to help them get to Speak Up About ME in person,
and the ones who have finals to take (among the lucky ones who can attend school),
and the ones taking part in a research study on May 11th,
and ............ each and every one of them.
These young people are the next wave of advocates for ME/CFS.
Help build their confidence.
Help them find their voice,
so that they can be advocates for themselves
and for everyone with ME/CFS.
Also, support the parents who are participating in Speak Up About ME on behalf of their childrne who are too sick to travel!

"Kids pull heart strings and get sympathy votes."
Yes, they do!
"a. Since the kids became ill at such a young age, they didn't have a baseline for "normal" health compared to adult who became ill. "
And they forget what normal was like.


Also - watch the livestream of CFSAC on May 10th and 11th - the viewing numbers are carefully noted. Encourage your family, friends, pets to watch as well...

Thank you

 

Thanks for collating all this info, Cort.

Please support this project as you are able everyone!

Even if you didn't come down if ME/CFS as a child or don't care about pediatric ME/CFS, realize that HIV research got a huge boost from finally recognizing that HIV affected children and not only gay men, as initially thought. Kids pull heart strings and get sympathy votes.

Cort, the data on pediatric CFS recovery should be tempered with Dr. Bell's recent pediatric data at 25-yr. follow-up during which he mentions that the 80% recovery figure might be an overestimate: http://www.davidsbell.com/LynNewsV7N1.htm [scroll down]

a. Since the kids became ill at such a young age, they didn't have a baseline for "normal" health compared to adult who became ill.

b. An improvement in OI seemed to figure largely into kids saying they had "recovered." However, when probed, many still had to rest regularly and had severe fatigue and other symptoms.

Drs. Jason and Rowe both brought up these points at NIH and Dr. Bell has also expressed that unfortunately, people have run with the 80% figure. Hopefully, Dr. Bell reports on his cohort officially soon.

Good points, Hope123

Dr. Bell published a paper in a journal (non-reviewed I think but still looks like a journal if quoted) entitled, "Definition of recovery in Chronic Fatigue Syndrome". Info on this is in this thread: http://forums.phoenixrising.me/show...Bell-2010)-(inc-follow-up-of-pediatric-cohort)

 

Cort, it would be good if you could add the following group into your list

Tymes Trust is the longest established national UK service for children and young people with ME and their families. It is a respected national charity whose entire professional team give their time free of charge. They work constantly with doctors, teachers and other specialists, and played a major role in producing the childrens section of the Dept of Health Report on CFS/ME (2002).
Lord Clement-Jones CBE
Founder Patron

http://tymestrust.org/

Not expecting the whole quote, just the link. Tymes = The Young ME Sufferers Trust.

They have an impressive list of publications: http://tymestrust.org/tymespublications.htm

Their magazines: http://tymestrust.org/tymesmagazine.htm although designed for children and young people, can be enjoyed by people of all ages.

 

Thanks Hope, I had remembered hearing about Dr. Bell's followup to his followup but was unable to find it.

I went from being mostly in bed to probably having close to normal activity levels - absent exercise - but still hardly feel well and continue to have many symptoms. On one scale you might call me 'almost recovered'; if you were to ask me though I wouldn't dream of saying that. I think the studies are probably accurate in that many people do improve over time and some do not and some obviously get much worse.

My activity level went up over time and then I was hit with MCS 15 years later changed so much - but not my physical activity levels - which suggests to me that it may be quite different from whatever is causing the physical limitations of CFS.

I altered the piece to include Dr. Bell's later observations.

 

Thanks Dolphin - another nice children's site in the UK I added it.

 

Thanks Cort for reminding the devasting and suffering of children.

 

the Wyller group focusing on autonomic nervous system functioning

Just remember that Wyller is a very controversial person in the ME/CFS community in Norway/Scandinavia. He is in favour of CBT and graded exercise, and is considered somewhat of a Wessely figure.

 

Speak Up About ME.

- Help everyone affected by ME, become Invisible No More!



Also, remember to watch the CFSAC proceedings:
http://nih.granicus.com/ViewPublisher.php?view_id=26

 

Thank you to everyone who supported our May 11th 2011 Speak Up About ME event!

 

I apologize to everyone who submitted early onset info and thought it would be read aloud. The five minutes allotted for public comment were far too short for me to be able to read the list aloud.
So, I submitted the list that was current as of 3am (EDT) May 11th as my written testimony.



BTW - I will continue to update the list.
Please remind people that if they submit info, they give consent for me to use the information.