ME/CFS Researcher Says "This is Going to Turn Very Quickly"

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Laurel Crosby recently said she thinks "Things are going to turn very quickly in this disease". You've probably never heard of Laurel Crosby, and she's never published on this disease - so why should you listen to her? Because Laurel Crosby is deeply, deeply embedded in Ron Davis's work. In fact, she may be his closest collaborator.

[fright]
[/fright]I happened to meet Laurel Crosby at the San Francisco IACFS/ME meeting two years ago. She was spitting out theories and ideas so quickly my eyes were crossing. What an intellect I thought! (What a humbling experience as well :rolleyes:)

I thought, my god, this woman HAS to have a central role in all this - and it turns out she does. She's been working with Ron Davis for four years producing intricate models that attempt to explain what's happening in ME/CFS. Those models took on a new significance when metabolomics testing opened things up tremendously. (More about that later).

Janet Dafoe, Ron's partner, said Laurel can dig up things that nobody else. She's a tenacious, dedicated researcher.

So when she says at the MEAction rally at San Francisco that she thinks "Things are going to turn very quickly" in this disease - she's definitely someone to listen to.

Stay tuned for a talk with Laurel Crosby...
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
After having CFS for 25 years, I'll believe it when it happens. After the XMRV disaster, I think researchers are better off not saying anything until they have replicated research to present us.
We shall see. Pathogens, though, are pretty tricky. This is a new approach but it doesn't have the problem of pathogen identification.

One study has been done - unpublished but it has not been replicated....Time will tell!
 

Gamboa

Member
It's been a while since I have been here due to a severe downtown all winter ( Hi Cort and everyone else) so I have not been able to comment but have been following along very closely to all of the recent events and studies in progress and I truly do believe that we really are just around the corner from some major insight into this dreadful disease.

The technology available now is making quick work of investigations that in the past would have taken years to do, if ever. I understand those who are pessimistic and feel that they have seen this all before....but these latest studies are light years beyond what was done in the past. This is it folks!

Thanks Cort for keeping me and the rest of us informed and up to date.

Claire
 

Forebearance

Well-Known Member
If this group of researchers, working with Dr. Naviaux, can figure out the mechanism of the disease, or in other words how it makes us sick, then we could get some treatments that would actually work on everybody.

Then we'd be in the same position as people with MS or Parkinson's disease. We could have treatment while the researchers continue to try to figure out what ultimately causes people to get the illness.
 
Big promises elicit funding and donations. I would rather just see data, particularly from trials, such as Fluge and Mella.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
It's been a while since I have been here due to a severe downtown all winter ( Hi Cort and everyone else) so I have not been able to comment but have been following along very closely to all of the recent events and studies in progress and I truly do believe that we really are just around the corner from some major insight into this dreadful disease.

The technology available now is making quick work of investigations that in the past would have taken years to do, if ever. I understand those who are pessimistic and feel that they have seen this all before....but these latest studies are light years beyond what was done in the past. This is it folks!

Thanks Cort for keeping me and the rest of us informed and up to date.

Claire
Thanks good to see you back - it's been a while. I hope you're feeling better with the temperatures rising...Yours truly, Cort
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Big promises elicit funding and donations. I would rather just see data, particularly from trials, such as Fluge and Mella.
Completely understandable. From what I gather they hope to see one paper published this fall and the expanded study that hopefully validates its findings is already underway. So in research time we might get validation fairly quickly....In people time it takes quite a while...

There are a lot of naysayers out there about ME/CFS; I think that just makes it more difficult to get things rolling - you have to fight every inch of the way to get in to journals, and get past review panels...
 

Justin

Active Member
The mitochondria plus the gut to me go hand in hand so this makes sense to me.

Dr Naviaux and Lipkin combined might be able to nix a large cohort.....

The individuals that have a high neurological presetation with POTS may be another subtype that really needs to be explored as this is what true me was labelled as by the WHO.

then their is the autoimmune group as well that hopefully Fluge and Mella can figure out.

I would like to see everything fast tracked with a billion $ investment that does not include anything to do with CBT and GET. And merely focuses in on physiological causes to stop the harm....

A Specialist today labeled POTS as a Neuro Psychiatric illness along with ME.....the stigma is just ludacris considering in the medical profession...

He is at least going to test me...
 

Nina

Member
Hope is essential to life, I think. And I am running on empty. Not incidentally, my mother just passed away on the 22nd. She died of Parkinson's. Sure, she knew what killed her. I mean, the medical establishment recognized, treated, named her suffering. Not sure that helped her much. She suffered terribly, struggled like a true heroine. She'd been a long distance bicycle fiend. She taught yoga, meditation. I think of her, and of how much she transcended, how silent she was in her suffering, how vocal she was in her ecstasy that "the sky is sooo blue today", how beautiful she was from the inside out. I want to be like that. Not sure I know how. Maybe I will have to create hope out of thin air. Hope rising...

And yes, she had a fibro DX.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hope is essential to life, I think. And I am running on empty. Not incidentally, my mother just passed away on the 22nd. She died of Parkinson's. Sure, she knew what killed her. I mean, the medical establishment recognized, treated, named her suffering. Not sure that helped her much. She suffered terribly, struggled like a true heroine. She'd been a long distance bicycle fiend. She taught yoga, meditation. I think of her, and of how much she transcended, how silent she was in her suffering, how vocal she was in her ecstasy that "the sky is sooo blue today", how beautiful she was from the inside out. I want to be like that. Not sure I know how. Maybe I will have to create hope out of thin air. Hope rising...

And yes, she had a fibro DX.
What a magnificent woman your Mother was Nina; that she was able to transcend her devastating illness and still be in love with what was around her. We can all hope and work towards meeting adversity the way she did. I imagine that it took a lot of work and practice to get that way. Thanks for the reminder that every moment is precious...
 
Nina, I interviewed an md phd working on Parkinson's. She said they are just beginning to zoom in on what causes it. They have drugs to help symptoms, yes, but the neurons are dying. One interesting fact is dopamine is actually somewhat toxic. And the neurons in the substantial nigra are more vulnerable. If I recall, they are slender and long. So though the actual disease process occurs throughout the brain, its those neurons that are damaged and lead to Parkinson's.
 

Justin

Active Member
The more I read about stem cells the more I hope they atart researching them more and allocating more money to research. I think these may be part of a cocktail to restore health to a certain degree.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Nina, I interviewed an md phd working on Parkinson's. She said they are just beginning to zoom in on what causes it. They have drugs to help symptoms, yes, but the neurons are dying. One interesting fact is dopamine is actually somewhat toxic. And the neurons in the substantial nigra are more vulnerable. If I recall, they are slender and long. So though the actual disease process occurs throughout the brain, its those neurons that are damaged and lead to Parkinson's.
I think there could be a connection to Parkinson's with ME/CFS and if so obviously a possible shared genetic weakness.
 

Justin

Active Member
I think there could be a connection to Parkinson's with ME/CFS and if so obviously a possible shared genetic weakness.
Just a thought or more.. true ME has signs and symptoms similar to parkinsons but it takes people out at such young ages....
 

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