• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Mindy Kitei: Play it again, and again and again

Ember

Senior Member
Messages
2,115
Thursday, May 17, 2012

http://www.cfscentral.com/
A group of mostly female students aged 12 to 19 in San Antonio, Texas, have come down with a constellation of symptoms physicians are terming unusual. Those symptoms include chronic fatigue, headaches, nausea, vertigo, stomach problems and seizure-like activity. In a recent news segment by San Antonio reporter Sarah Lucero, a mother of one of the girls said that one doctor accused her daughter of faking it—because the symptoms are so uncommon—and urged psychiatric care.
In the segment, other diseases that afflict teenagers are mentioned, including “chronic fatigue syndrome, postural tachycardia syndrome or POTS.”

When will doctors get it that POTS is usually part of chronic fatigue syndrome and that these Texas students probably have CFS? Perhaps when the name CFS is changed to Myalgic Encephalomyelitis (ME) or something else that explains how serious this disease really is.

One bright light: The San Antonio illness is being termed “neuroimmune syndrome.”

Has CDC gone to San Antonio to investigate? My bet is no.

Sadly, the mother of the teenage girl in the piece is taking her daughter to the Mayo Clinic for help. Perhaps more than any other hospital in the United States, the Mayo Clinic is known for its dismissal and psychologizing of ME. The most egregious example that I know of: Back in the 1980s, Nancy Kaiser, who suffered from a severe case of ME—before she had a name for it—traveled to more than 200 physicians for help until she found ME-literate physician Daniel Peterson. One of her stops along the way was Mayo.

During the visit, Nancy had a seizure—she had multiple seizures every day before going on the experimental drug Ampligen—and fell off her chair. The Mayo physician kicked her and told her that she was faking it. Nancy, of course, had no memory of the event, but her husband, Jim, who accompanied her, certainly did. Nancy died of ME in 2008.

San Antonio news segment: http://www.khou.com/news/health/San-Antonio-teens-catching-mysterious-illness-151546105.html
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
When will doctors get it that POTS is usually part of chronic fatigue syndrome and that these Texas students probably have CFS?

POTS thou it is common in ME... is also actually not that uncommon in a teen group who develop POTS and only do have POTS. (it seems to be the most common age group to develop non ME POTS).
There has been quite a bit of research done on non ME teens who have only POTS (this patient group who develop POTS as teens, also often recovers from the POTS too in time).

Those symptoms can actually be just POTS symptoms (people who only have POTS due to the various symptoms that can give due to the autonomic dysfunction and low blood volume etc in that illness, can easily be wrongly diagnosed with ME/CFS!!)..
thou I do think it sounds more likely they have ME (along with maybe having POTS) seeing it is an outbreak situation.

This kids probably dont have CFS but rather have ME. (seizure like incidents are common in ME) and glad if the authorities there arent thinking these kids as having CFS.
 

Enid

Senior Member
Messages
3,309
Location
UK
Play it again and again - how long do we have to reinvent the wheel. ME/CFS has been around an awful long time (and pathology findings).
 

Desdinova

Senior Member
Messages
276
Location
USA
Has CDC gone to San Antonio to investigate? My bet is no.
Would anything good come of it if they did?

Sadly, the mother of the teenage girl in the piece is taking her daughter to the Mayo Clinic for help.
Yep she should be careful if she does go or she may really need help.
Can't help but remembering how Marc Iverson founder of the CFIDS Association of America was quoted as saying In Oslers Web that the only thing he received from going to the Mayo Clinic was of Wallet-ectomy.