Discussion in 'General ME/CFS News' started by Dolphin, Apr 28, 2017.
I'll be pleased if it is a favourable article though.
Here's the last part of the story. The reporter made an error saying patients will be on the external committee adjudicating cases to see if they meet CCC. I told him outside *physicians* are on the panel. He did a quicky story and didn't want to get into distinctions between CCC and older criteria.
Researchers will analyze body fluids, fecal samples, and cognitive performance on a range of tests. After initial results are completed, the group with chronic fatigue syndrome will be winnowed to only include patients whose symptoms closely fit the parameters of the syndrome.
That group will then return to Bethesda for what might best be called a crash test: Participants will be run through a regimen of physical and cognitive exercises meant to push them beyond the brink of exhaustion, during which time they’ll be watched closely for clues about the syndrome’s biological underpinnings.
In subsequent phases, scientists will then seek treatment targets and, ultimately, test prospective drugs. The study is expected to finish in three years, at a cost of roughly $9 million.
Some members of the patient community initially viewed the study with skepticism, claiming that it was designed to echo previous research — now discredited — that perpetuated the false notion that chronic fatigue syndrome exists mostly in the patient’s mind.
Vastag attributed that reaction to early NIH drafts of the study design, which led some to believe that investigators were relying on an outdated understanding of the disease. That misstep, he said, was more a consequence of the institute’s eagerness to accelerate the launch than any desire to preordain the study’s conclusions.
Indeed, the institute subsequently involved the chronic fatigue syndrome community in refining the study’s design — most notably, incorporating patients into an external panel to review those who will remain in the study following Phase 1.
In another nod to patients, investigators extended the initial phase of the study from one week to two, to stave off exhaustion.
On Thursday, Vastag spoke just after having “about 10 billion of my white blood cells pulled,” or one cup’s worth.
“I’m pretty tired already, but the toughest thing for me is tomorrow, when we do neurocognitive testing,” he said. “Even for someone whose brain is totally functioning it can be taxing. After that, I may not be able to talk for the rest of the day.”
Yeah, it is exactly what is happening, doesn't it? Ugh.
Give Ron Davis the $9 million. Much higher ROI
I'd like your crystal ball. Hard to make a statement like that ahead of results. NIH has 30 scientists involved. That $9m estimate does not include their salaries because they're paid by the place as a whole. No doubt Ron could do a ton of good with $9m, but at NIH the money that stays on campus is a different pot than the money they grant out. It's not fungible.
Also, I told the reporter that Nath said NIH does not account for intramural studies dollar for dollar (no one gets billed for MRI scans, etc) but if he had to estimate, he'd say it was about $3m a year in resources used.
I did like reading that .
What I've read from you and another participant so far sounds hopeful. It would be lovely to see both getting funded and getting somewhere. OMF, MDP(lipkin) and this project.
Couldn't agree more. We need multiple groups banging away. The RFAs look good in terms of how they're written but the dollar amounts were very disappointing.
I'd like the crystal ball on other groups, whoever used one before funding PACE should be shot out of a cannon.
You can also try a Google Site Search
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