USA: National Institutes of Health (NIH) intramural ME/CFS study

Status
Not open for further replies.
This should be reposted time and time again!

It is completely above me why they after what, one year, still have not enough patients for this study, that is the dream for every moderate patient in my view to figure out what is going on!

Please repost this everywhere, also OMF and ME Action should post this, as well as Healthrising!

@Cort @JenB
 
butter. said:
This should be reposted time and time again!

It is completely above me why they after what, one year, still have not enough patients for this study, that is the dream for every moderate patient in my view to figure out what is going on!

Please repost this everywhere, also OMF and ME Action should post this, as well as Healthrising!

@Cort @JenB
Click to expand...

It has been posted repeatedly. Vastag is the husband of the co-founder of ME Action. I think that the difficulty of obtaining diagnoses may contribute to the difficulty in finding people who have been sick for less than 5 years. By the time that people are diagnosed, they are often outside of the time window.

I believe that they will get enough patients for the study, but it’s not easy.
 
Wilhelmina Jenkins said:
It has been posted repeatedly. Vastag is the husband of the co-founder of ME Action. I think that the difficulty of obtaining diagnoses may contribute to the difficulty in finding people who have been sick for less than 5 years. By the time that people are diagnosed, they are often outside of the time window.

I believe that they will get enough patients for the study, but it’s not .
Click to expand...


Thank you, still, I am quite active online, you are not hearing enough from it if you ask me. (of course nobody does :-) )
 
 
Last edited:
I'm confused (which doesn't take much..;)). Is this another inter-mural study or is this highlighting the existing one?
 
Not bad. Could have been better, could be worse. The scale of the problem isn't well-represented, but then it rarely is, even in other diseases.

Best thing out of this is if it leads to more participants in the study.
 
Merged thread

Patients Push Limits for Clues to Chronic Fatigue Syndrome By LAURAN NEERGAARD, AP Medical Writer (Jan 8, 2020)

Researchers hooked Zach Ault to medical monitors as he slowly climbed onto a gym bike. An invisible disease is sidelining this once avid athlete and he knew the simple exercise would wipe him out -- but Ault was pedaling for science.

Chronic fatigue syndrome is one of medicine’s most vexing mysteries. Now doctors at the National Institutes of Health are using volunteers like Ault for a unique study that pushes their limits in search of what’s stealing all their energy.

“I’ve tried to exercise my way out of this multiple times and I’ve put myself in deeper pits every time,” said Ault, 36, of Paducah, Kentucky, as he began a nearly two-week stint at the research-only hospital outside the nation's capital.
Click to expand...

“The ignorance about the condition just vastly dwarfs what we know about it,” said Dr. Walter Koroshetz, director of NIH’s National Institute for Neurological Disorders and Stroke, which is leading the research.
Click to expand...

Part of the trouble is that varied symptoms make it hard to compare patients. A patient advocacy group called Solve ME/CFS Initiative is preparing to open a registry where patients can send in medical information and blood and saliva samples to help scientists expand research.
Click to expand...

There are some clues. Earlier studies have found brain inflammation in patients, and nervous system abnormalities that might explain why they feel worse upright than lying down. The immune system seems to be on chronic alert. Then there’s the energy drain. Just last month, Cornell University researchers reported that patients' key immune cells don’t make energy properly.
Click to expand...

Is this the post-infectious study?
 
Last edited by a moderator:
Status
Not open for further replies.
Back
Top Bottom