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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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Jan 18th Webinar with Dr. Lucinda Bateman

Rrrr

Senior Member
Messages
1,591
that impressive graph that shows how cfs patients experience exercise is found in this article

http://www.jpain.org/article/S1526-5900(09)00574-4/abstract

you need to join the journal to get the full article (that would include the graph), so this link only allows you to see the abstract (summary).

batemen said the graph was soooo impressive that the journal put it on the cover of the magazine.

that graph is THE best diagnostic test i have seen for cfs. am i alone in thinking that?

rrrr
 
K

_Kim_

Guest
How can we help?

1. Donate to Research (shout out for WPI and CAA)
2. Participate in clinical trials
3. CAA has established its own biobank for the research community - which allows anyone in CFS community to provide biological samples, clinical data, etc (details about biobank coming soon)

p3IZu.jpg
 

Cort

Phoenix Rising Founder
but how do they determine if XMRV is there without a standardized test? I suppose they look for as many different genetic sequences as they can find and assume that at least some of them have to show up.

Luv that Biobank. Just think all these samples sitting there; researchers don't have to try and find chronic fatigue syndrome patients - they just go to these samples from these very well characterized patients and test them! That would probably cut about a year off the research project. Thats a year less we have to wait.

That whole international research network thing the CFIDS Association is engaged in is really exciting to me. I REALLY hope it works out... it will take money, though..
 

anne_likes_red

Senior Member
Messages
1,103
They need money for research.

They need money for research.
(And people to participate in studies.)

CAA has established a Bio Bank - anyone in the CFS community can provide data - a Webinar is to come in the next month to discuss this.
 
K

_Kim_

Guest
that impressive graph that shows how cfs patients experience exercise is found in this article

http://www.jpain.org/article/S1526-5900(09)00574-4/abstract

you need to join the journal to get the full article (that would include the graph), so this link only allows you to see the abstract (summary).

batemen said the graph was soooo impressive that the journal put it on the cover of the magazine.

that graph is THE best diagnostic test i have seen for cfs. am i alone in thinking that?

rrrr

When the webinar is done, I will see if I can access full-text.

Thanks Rrrr....
 

CJB

Senior Member
Messages
877
They're wrapping up. The webinar has been recorded and will be posted on the CAA website as soon as they can get it done. (Later today!!!!!!)
 

Lily

*Believe*
Messages
677
Important to know that the graphs Kim has just posted are all on the SAME scale - for healthy controls, for CFS patients, and for people with MS.
It is a measure for symptoms.

Just a little thing, but I think that is supposed to be FMS, not MS.

Thanks Anne!
 

Rrrr

Senior Member
Messages
1,591
other than that impressive graph, i did not find any now info coming out of this talk. do others agree? it was just basic xmrv info.

dr batemen is impressive, tho....!
 

Nina

Senior Member
Messages
222
Rrrr... no, you are not alone in thinking that! I'm already racking my brain trying to find ways to push this... This is so huge!!
 

Lily

*Believe*
Messages
677
Best guess. Reliable test should be available within a year.

Suzanne Vernon says the blood supply task force is currently looking for XMRV - if it turns out there is indication of infection there the provision of a standardised test will be accelerated.

Blood supply is being tested, but we don't really have a reliable test. Kinda scary. But I guess going with what you've got is better than nothing. Seems like you'd accelerate the provision for standardized testing now....
 
K

_Kim_

Guest
My University does not have holdings to the Journal of Pain, so I cannot get full-text access of the paper either.
 

anne_likes_red

Senior Member
Messages
1,103
QUOTE=Lily;36489]Oh, well even better! Thanks for clarifying that Anne.[/QUOTE]

That's what I thought (even better).....seems so impressive! :D
 

CJB

Senior Member
Messages
877
I'm thoroughly exhausted. I'll see youz guyz later. I think we captured enough of it to hold you all over until they get it posted.
 
K

_Kim_

Guest
I'm thoroughly exhausted. I'll see youz guyz later. I think we captured enough of it to hold you all over until they get it posted.

Great commentaries everyone!! I loved being at a virtual lecture with all you :D
 

anne_likes_red

Senior Member
Messages
1,103
I would have liked to contribute more! My multi tasking abilities are compromised! :D You know how it goes.

Got to go now, kids are just waking up (Tuesday morning here!)...

Check out the CAA website later.