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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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April 7/8 NIH State of Knowledge Conference - watch online to show our support!

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
I lost sound at one point, and at another point I had a problem with everything stopping and then jumping forward a second or two, but disconnecting and reconnecting fixed it.
 

Kate_UK

Senior Member
Messages
258
Is this "Roy Freeman, M.D., Beth Israel Deaconess Medical Center, Harvard Medical School Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and the Autonomic Nervous System"?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Is this "Roy Freeman, M.D., Beth Israel Deaconess Medical Center, Harvard Medical School Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and the Autonomic Nervous System"?

Yes, I think it must be - thanks, Kate. I was hoping he might be a useful Brit actually in the UK and available to see patients but no...
 

Rrrr

Senior Member
Messages
1,591
Yes, I think it must be - thanks, Kate. I was hoping he might be a useful Brit actually in the UK and available to see patients but no...

i saw him 100 years ago at Beth Israel hospital and found him completely not helpful as a doctor. he was yet another researcher only interested in using CFS patients to his benefit, that is, to benefit his research studies. but this was not unusual for CFS specialists. maybe he is different now?
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I only have sound since about one and a half hours ago... :rolleyes: Does anyone else have this problem? Even rebooting didn't help.

And because i was travelling i missed Coffin and Judy Mikovits, what a shame... at least i will see that part when they post the videos, i hope.
 

Rrrr

Senior Member
Messages
1,591
what did that speaker/researcher -- James Baraniuk, M.D., Georgetown University, Neuroimmunology of Chronic Fatigue Syndrome -- just say? that THC (medical marijuana) inhibits deactivation of tramatic brain injury? what does that mean? (he said he was putting all his hope into this one treatment).
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
alter said he used coffin's iap tests for contamination and found none. did we know that? sounds huge. i wish coffin had replied to that.

we did know that; Alter and Lo told Coffin this at a BWG meeting previously, but it evidently didn't sink in with Coffin
 

camas

Senior Member
Messages
702
Location
Oregon
As I was listening to James Baraniuk I was thinking 'this guy sounds like he's a little high' and then he brings up medical marijuana as a treatment. lol

ETA: I apologize for making fun of Baraniuk yesterday. Beside Klimas, he was the only one today to make the point that a big part of the problem is funding. Something to the effect that the money that goes into one longitudinal study on heart disease and results in little useful information would probably be enough find the cause and cure of CFS.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
But their page says there are only 541 people currently watching, so it's not that many. I wonder if it's not possible to set things up in such a way that that sort of number can be handled.

Thanks girlwiththedog, unfortunately i'm at a hotel, so i would have to go ask them to do that.
 

Rrrr

Senior Member
Messages
1,591
but what does that mean, that THC (medical marijuana) "inhibits deactivation of traumatic brain injury?" that is NOT good, right? deactivating traumatic brain injury is good. but inhibiting deactivation would be bad. no? am i getting this wrong?
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
who is talking now and why doesn't she know about the follow-up to Black's paper? the one that said, wait, actually the CFS patients got worse and did reach an activity ceiling?