-
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, 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.
Another CBS report on CFS study...
- Thread starter dannybex
- Start date
August59
Daughters High School Graduation
- Messages
- 1,617
- Location
- Upstate SC, USA
That was a very good interview and while it very briefly comingled pshycological as one of the symptoms, there was no emphasis put on it. Of course, there was ZERO mention of a PACE Trial. I liked it very much when Jennifer Ashton was emphasized that only 5% see any resolution to symptoms currently and that these proteins are a "fingerprint", which equals identity for patients.
We need to give good feedback on this if possible. We really needed this at this point in time. Thanks you "The Early Show" (I about called it "Good Morning America")!
We need to give good feedback on this if possible. We really needed this at this point in time. Thanks you "The Early Show" (I about called it "Good Morning America")!
justinreilly
Senior Member
- Messages
- 2,498
- Location
- NYC (& RI)
better than most, but that's not saying anything. At least she never once said "chronic fatigue". This one and Weds' CBS piece are the only media coverage I have ever seen that didn't refer to ME ("CFS") as "chronic fatigue" at least once.
It's always annoying to hear in every piece on any study showing new biomarkers, something to the effect of: "for the first time there is evidence that CFS is physical and not just psychological." : )
urbantravels
disjecta membra
- Messages
- 1,333
- Location
- Los Angeles, CA
I thought that was actually an unusually good piece. I wouldn't die on the hill of whether or not a journalist - especially a TV journalist - ever utters the words "chronic fatigue" instead of "chronic fatigue syndrome," personally. More important to me is that this correspondent was pretty clear on the seriousness of the disease, the dismal chances of recovery, and the fact that available treatments are symptomatic "band-aids."
In my ideal world, of course, I would not have anyone perpetuating the notion that the disease is "vague," ill-defined, extremely variable, etc. Her little explanation of the difference between a sign and a symptom was a good one - but there are symptoms and then there are symptoms. She clearly does need a quick course in the disease definition(s) and especially the CCC - and I'd just about die of happiness if any of the TV talking heads ever put in a SENTENCE about PEM and how severe and unique a symptom of this disease it is.
As for "signs" that anyone could see, I got some very dismal numbers right here on a piece of paper from the Pacific Fatigue Lab that seem quite objectively measured to me. The only self-report involved there was the part where I reported I could no longer pedal. Even that was objectively measurable as "maximal effort" - they could have done that test without me saying a word.
In my ideal world, of course, I would not have anyone perpetuating the notion that the disease is "vague," ill-defined, extremely variable, etc. Her little explanation of the difference between a sign and a symptom was a good one - but there are symptoms and then there are symptoms. She clearly does need a quick course in the disease definition(s) and especially the CCC - and I'd just about die of happiness if any of the TV talking heads ever put in a SENTENCE about PEM and how severe and unique a symptom of this disease it is.
As for "signs" that anyone could see, I got some very dismal numbers right here on a piece of paper from the Pacific Fatigue Lab that seem quite objectively measured to me. The only self-report involved there was the part where I reported I could no longer pedal. Even that was objectively measurable as "maximal effort" - they could have done that test without me saying a word.
fla
Senior Member
- Messages
- 234
- Location
- Montreal, Canada
Baby steps... These CBS reports are positive small steps. Watch it, comment on it and tell your friends to do so. Someday there will be a televised telethon for ME just like MS.
SpecialK82
Ohio, USA
- Messages
- 993
- Location
- Ohio, USA
Completely agree. We will know when we have "arrived", they will stop opening with this line. While I liked the doctor's serious tone about our illness, I did not like her brief reference to the psychological. Also, why can't they mention PEM, that is absolutely crucial, we still aren't getting the basics out.
Still very happy for the national positive coverage - wish there had been more media outlets picking this up and investigating further.