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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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CSF Study appears on Fox News

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
thanks for posting, great to see coverage, but I was kind of cringing all the way through it. I kept thinking PEM, say PEM, the illness was minimalized unfortunately.
 

Enid

Senior Member
Messages
3,309
Location
UK
Lovely to see - thanks for posting cigana. The "science" really is taking hold now. Slowly consign PACE rubbish to history soon. "There really is something going on" - oh yes !
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
You know, Fox might need some good education on the disabling nature of this disease. If we could come together - emails, letters, or a group letter with our signatures, maybe they would investigate further. Unlike Broadcast news shows, Fox has 24 hours a day that they need to fill - they are hungry for news - we could suggest other doctors to interview as well like Dr. Donnica Moore.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi, the thing that annoyed me was this: while the word syndrome was used at the beginning, the "chronic fatigue" designation was used a lot by the reporter. At least Katie Couric got it right.The doctor also said that sometimes exercise and physical therapy works, which is ok, but it can be confused with the nonsense CBT/GET claims. Of course he missed PEM as discussed before, and he seems to not realize this isn't the first mention of proteomics in ME/CFS research. I really wish he at least mentioned research by the Lights, but then he had much less than three minutes, and probably had never heard of it anyway.

Bye, Alex
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
Comments

I didn't see anywhere to post comments? It looks to me like describing someone who is tired and hurting (like osteo arthritis), it doesn't show the true illness

glen
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
IMHO, Dr. Seigel is wrong about the muscle pain being the main symptom of CFS that distinguishes it from depression. I haven't had that in a couple of years now. My muscles USED to go into spasm over the slightest stress but now even if I do something that stresses them, the stiffness and pain is gone in 24 hours or less ... kow ... don't want to curse it ... Unfortunately, I have no idea what I did that stopped this ... the Paleo diet would be my first guess.

I hope other doctors realize this ... tc ... x

PS. I was really disappointed that he didn't mention PEM or orthostatic intolerance ... : (

Why is it that we know more than the doctors who are diagnosing and treating people for this ?
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Why is it that we know more than the doctors who are diagnosing and treating people for this ?

Because to us it's all-important... this is our life. To the doctor, this is one or five annoyingly complex patients among his whole practice, which he (or she) hasn't the time or resources to devote to reading the actual literature. Normally whatever s/he needs to know, is taught in med school, continuing ed courses, or professional conferences, or can quickly and easily look up on reputable site like CDC or Mayo Clinic.

Ha.

Normal sources of info don't work in this instance.
 

Wayne

Senior Member
Messages
4,267
Location
Ashland, Oregon
Thanks for posting this Cigana. I actually thought it was good to very good. So many things could have been done better, but it seems like one more step in the right direction as we continue to navigate this very big "perception transition" from psychosomatic "yuppie flu" to biological disease. It's not happening overnight like we would all like, but from what I can tell, the train has left the station. And there's no going back.

Wayne
 

RestingInHim

Realist
Messages
159
Location
Riverside, CA, USA
thanks for posting this, cigana. my mom told me about the report, so was good to see it for myself. sorry...but as a person whose had me/cfs for 18 years...this guy knows nothing about it! and he reinforced the idea that it can be overcome through exercise...which is what my mom got out of it. ugh!! but then i'm grouchy...in midst of a big flare-up.

gotta get back to resting....