Posts Tagged 'orthostatic intolerance'

Videos from Stockholm seminar on ME(cfs) in young people

The videos are mostly in English

Regrettably the one with Nathalie (young person with ME(cfs)) and Camilla Gillberg is in Swedish.

 

http://rme.nu/seminarium-2014
http://translate.google.com/translate?hl=en&sl=sv&u=http://rme.nu/seminarium-2014

Goggle translate:

Seminar on children and young people with ME/CFS – 2014

On November 12, 2014 organized the National Association for ME patients a seminar on children and young people with ME/CFS. The
seminar was conducted in cooperation with RME Stockholm and RME Scania and held at County Hall in Stockholm. They filmed lectures accessed through the links below.

(Second speaker – Stig Nyman – in Swedish) Introduction- http://youtu.be/mMssaa7i5y0 Henrik Fransson, chairman RME Stockholm, Stig Nyman, councilor

Orthostatic intolerance and ME/CFS in children- http://youtu.be/7OMEGjBWQdo Peter C. Rowe, Johns Hopkins Children’s Center, United States

ME/CFS in children – Diagnosis and Treatment- http://youtu.be/kl5EfvzsL88 Nigel Speight, The University Hospital of North Durham, UK. Dr. Speight also discussed the “assault” as health professionals and other agencies expose children to because of feldiagnosticering in cases of ME/CFS.

The immunological / viral / endocrine interactions in ME/CFS- http://youtu.be/VUDhI0gXbbE Dr. Amolak S. Bansal, Department of Immunology, St Helier Hospital, UK.

(In Swedish) Living with ME/CFS as a child- http://youtu.be/tAjEryHR4L4 Nathalie Gillberg 14 years and suffering, and Camilla Gillberg, parent says.

Panel Discussion- http://youtu.be/-60Bzf35OLY

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Of special interest to those with OI (POTS, NMH, etc)

Dr. Peter Rowe has kindly given permission for his brochure on orthostatic intolerance and its treatment thereof to be posted here: OIinfo2013.

This information should not take the place of your regular medical professional. It could however be beneficial for you and your practitioner to read and discuss to see if treatment modalities described here might be of benefit to you.

(Please note that this is the November 2013 version which is the most current as of 1 April 2014.)

You may also want to check out the easy to print cards on this site to carry with you:

http://www.dysautonomiainternational.org/page.php?ID=164

This one is about OI:

http://www.dysautonomiainternational.org/images/MedicalAccommodationCard_OI.jpg

This one is about POTS:

http://www.dysautonomiainternational.org/images/MedicalAccommodationCard.jpg

Cooling products (July 2013)

Cooling products (July 2013)

Some people with OI (orthostatic intolerance), POTS (Postural Orthostatic Tachycardia Syndrome), etc. feel “better” in warm weather and “feel” better in cold weather.

Increased humidity, poor air quality and heat have very negative effects on the two patients I know best.

A friend helped us start this list of cooling vests and other cooling products:

http://www.bodycooling.net/cooling.html

http://www.mscooling.com/product/6522

http://www.mscooling.com/phasechangevest

http://www.stacoolvest.com/

http://www.glaciertek.com/

http://www.arcticheatusa.com/

http://www.techniche-intl.com/en/home.html

http://www.coolsport.net/index2.html

http://store.polarsoftice.com/polarshop/pc/home.asp

It was nice to find out that the cooling vests and neck wraps do indeed make a difference for our household (even indoors).

Consider the humidity levels of your area.

If high humidity is frequent in your area, products that use freezer/gel packs (while more expensive) cool much more effectively than evaporative products.

 

Sue J supplied a link to a blanket (thanks):

http://www.solutions.com/jump.jsp?itemID=17114&itemType=PRODUCT&iProductID=17114

 

Pillows and such:

http://www.solutions.com/jump.jsp?itemType=PRODUCT&itemID=17022

http://www.polarproducts.com/polarshop/pc/Soft-Ice-Cooling-Pillowcase-14p42.htm

http://www.amazon.com/Hot-Flash-Cooling-Pillow-Primley/dp/B001PL7R5Y

http://www.amazon.com/gp/product/B0029LHHP4/ref=pd_lpo_k2_dp_sr_2?pf_rd_p=1535523722&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=B001PL7R5Y&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1MMFH80N3QQ3EP14AWC0

http://www.amazon.com/Sleep-Innovations-Reversible-Memory-Pillow/dp/B0073CIVTK/ref=pd_sim_hg_4

http://solutions.blair.com/p/cool-gelmat/51165.uts

 

Absorber cloths cut into long strips that you just dunk into cold water.  They don’t get as warm as the fatter neck cloths and they’re not heavy.  (thanks SHW)

http://www.amazon.com/Frogg-Toggs-Chilly-Cooling-Towel/dp/B0049RPBWW Because this is an evaporative product, it will be more effective in areas of low humidity.

 

Other cooling products:

http://www.polarproducts.com/polarshop/pc/Kool-Max-Ankle-Foot-Cooling-Wrap-14p232.htm

http://www.polarproducts.com/polarshop/pc/Pair-of-Kool-Max-Cooling-Wrist-Wraps-14p82.htm

http://www.polarproducts.com/polarshop/pc/Kool-Max-Cooling-Neck-Upper-Spine-Wrap-14p43.htm

http://www.mscooling.com/phase-changing

http://www.amazon.com/BeColm-Hot-Flash-Relief-Cooling/dp/B007V81OGS/ref=pd_sim_hg_24

Amazon has many additional cooling products – possible search terms are: cooling for MS, cooling vest, cooling neck wraps, cooling wraps wrist (or ankle).

Please consider the humidity levels of your area.

If high humidity is frequent in your area, products that use freezer/gel packs (while more expensive) cool much more effectively than evaporative products.