link to Miriam Tucker’s article Chronic Fatigue Syndrome: Wrong Name, Real Illness

 

http://www.medscape.com/viewarticle/837577_2
“Chronic Fatigue Syndrome: Wrong Name, Real Illness
Miriam E. Tucker
January 08, 2015

Introduction

Sufferers of what has been called chronic fatigue syndrome (CFS) are challenging patients, presenting with complaints of postexertional
malaise, persistent flulike symptoms, unrefreshing sleep, “brain fog,” and often a long list of other symptoms that don’t seem to fit any
recognizable pattern. Some appear ill, but many don’t. And the routine laboratory tests typically come back negative. ….”

http://www.medscape.com/viewarticle/837577_2

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”

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)

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.

Cooling vests and other cooling products

In the northern hemisphere some of us are enduring a lot of hot weather, so I thought I would put the info from page about cooling vests and other cooling products here.

Some people with OI (orthostatic intolerance), POTS (Postural Orthostatic Tachycardia Syndrome), etc. do better in warm weather and others so better in cold weather.

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

A friend gave us the following list of links to some cooling products*:

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

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

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

We were pleased to discover 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:

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

And a pillow:

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

* This list is a sampling of sites that have these products. Send us legitimate links (from any country) that we can add to this list.

A friend pointed us in the direction of this video and we hope that you appreciate it as much as we do.

Sincere thanks to the young person* who made it.

 

 

 

 

 

 

 

(*Please be in touch with us. SpeakUpAboutME at gmail dot com)

Cooling vests and other cooling products

Some people with OI (orthostatic intolerance), POTS (Postural Orthostatic Tachycardia Syndrome), etc. do better in warm weather and others so better in cold weather.

 

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

 

In 2011 we found out about cooling vests (and other cooling products) and a friend gave us the following list of links to some cooling products*:

 

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

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

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

 

We were pleased to discover 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.

 

 

 

* This list is a sampling of sites that have these products. We will gladly make this list more extensive if legitimate links are sent to us. Legitimate links for such sites in countries outside the US are also hoped for.