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Update: New, if Belated, Gov't Interest in CFS Encourages Patients

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
New piece from Shannon Firth at Medscape, features Jen Brea, Ron Davis, IOM report, Brian Vastag's letter, NIH funding and more:
Update: New, if Belated, Goverment Interest in CFS Encourages Patients | Medpage Today


Starts with Jen Brea's story, and her problems with diagnosis that may be familiar to many
...a psychiatrist evaluated Brea and found nothing psychiatrically wrong.

Despite that evaluation, a neurologist -- after ruling out epilepsy and multiple sclerosis -- diagnosed her with conversion disorder. He said her symptoms stemmed from a distant trauma she had somehow forgotten...

The NNIDS in-house clinical study of patients who started mecfs recently after an infection is run by Avnidra Math, MD, who it turns out has quite a CV:
... In 2002, he joined Johns Hopkins University as Professor of Neurology and Director of the Division of Neuroimmunology and Neurological Infections.

He joined NIH in 2011 as the Clinical Director of NINDS, the Director of the Translational Neuroscience Center and Chief of the Section of Infections of the Nervous System.

His research focuses on understanding the pathophysiology of retroviral infections of the nervous system and the development of new diagnostic and therapeutic approaches for these diseases.

Ron Davis and the Severely-ill study
He has medical colleagues who know his son's story and have read the IOM's report but remain skeptical about ME/CFS. He believes biomarkers will end that debate.

Tannenbaum explained that samples had to be taken within 30 minutes of a testing laboratory to maintain their integrity.

..."There's got to be something ... that's triggered this disease and we're much more likely to cure it if we can go to the original cause."

S
ome call the study a "fishing expedition" and Davis doesn't argue. "Basically we are looking for almost all types of molecular markers that are reasonably sound to do."

...He also doesn't expect to find a single biomarker, but several biomarkers of different types -- such as metabolites, RNA molecules, or proteins -- that together could serve as the biomarker....

...MF has collected $1.9 million in private donations this year. Davis said that technology companies in Silicon Valley have also volunteered to help in the analysis phase of his project... for free or at a low cost.


Jen Brea, on a big reason for the lack of progress:
"It's really hard to find an answer for something, when you're not looking."
 
Last edited:

Sasha

Fine, thank you
Messages
17,863
Location
UK
Very interesting article.

Biomarkers could ultimately be used to screen for the disease and aid in treatment.

Davis is hopeful that his son won't have to wait for a new drug to be developed, but that an existing, FDA-approved therapy could be identified sooner with the help of biomarkers.

Hope for all of us there.
 
Messages
10,157


Didn't do too well there :(
Prob because I typed in medscape I didn't find the other thread
Have asked for threads to be merged.

The threads have been merged. Please report duplicate threads via the "Report" post button. :)
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Jen Brea, on a big reason for the lack of progress:
"It's really hard to find an answer for something, when you're not looking."

An analogy I like to use is you cannot diagnose a brain tumor with just a stethoscope. You need the right tools. One of our big issues is, I think, that until relatively recently the high throughput gene and transcriptome sequencing, and large scale mass spec, plus who knows what else, were either not available or too expensive. That changes over time. When the right technology comes along we find answers. It looks very much like we might now have the technology to unravel the mystery.

Yet its also the case that three well known, well understood, widely taught, and usually available (though with travel) tests were developed in the 1940s and are applicable to ME and CFS. I am willing to bet that only a small minority of 1% of the medical community even use them, or know to use them, in ME and CFS. They are still using those stethoscopes to rule out brain tumors.
 

Denise

Senior Member
Messages
1,095
The threads have been merged. Please report duplicate threads via the "Report" post button. :)

Thank you for merging the threads. And thank you for letting me know that the report button can be used for such things. (I had never really focused on it (sorry) and thought it was for reporting forum misuse.)