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Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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"A Boost for Chronic Fatigue Syndrome Research" - The Atlantic
- Thread starter Kyla
- Start date
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
Thanku Kyla. 
Here's a link so people can click through:
http://www.theatlantic.com/health/a...for-chronic-fatigue-syndrome-research/413008/
Here's a link so people can click through:
http://www.theatlantic.com/health/a...for-chronic-fatigue-syndrome-research/413008/
oops. fixed the link.Thanku Kyla.
Here's a link so people can click through:
http://www.theatlantic.com/health/a...for-chronic-fatigue-syndrome-research/413008/
ScottTriGuy
Stop the harm. Start the research and treatment.
- Messages
- 1,402
- Location
- Toronto, Canada
"We are not crumbs! We must not accept crumbs!"
Larry Kramer, AIDS activist, 2007
Larry Kramer, AIDS activist, 2007
Forebearance
Senior Member
- Messages
- 568
- Location
- Great Plains, US
Finally you're coming through for us, Dr. Collins. Thank you.
dancer
Senior Member
- Messages
- 298
- Location
- Midwest, USA
I can't keep up with all the press of the last few days, from atrocious - (I'm looking at you England) - to hopeful. But some of the comments to this one at their site (I think it was this one) deflated some of my hopefulness at the news. I REALLY wish we had an anti-defamation league that could protest ignorant, prejudicial, hurtful hate speech being spouted about this illness.
anciendaze
Senior Member
- Messages
- 1,841
I would like to believe Dr. Collins means this.
One proof will be NIH willingness to find out what takes place when PEM/PENE causes anaerobic threshold and VO2Max to drop for 24 hours or more following exercise testing. Replicated research showing there really are patients with this characteristic has been out there for several years. Studying patients who do not have this characteristic may not even be studying the same disease.
If this is considered too expensive, perhaps the NIH might consider dealing with common hemodynamic problems reported by patients: Postural Orthostatic Tachycardia Syndrome and Neurally-Mediated Hypotension. These are not completely distinct. If a patient's heart rate climbs dramatically when they stand, yet pulse pressure (systolic - diastolic) scarcely rises, and/or if pulse pressure drops over a period of 20 minutes of standing, below the threshold normally used in diagnosing heart failure, you have found a physiological problem with direct impact on the patient's ability to perform many common activities and hold a job. Note to medical professionals: most places of employment do not provide facilities to lie down during the work day, and few automobiles can be driven while lying down. Testing for this can be done with equipment already in most medical facilities, (though you may have to replace standard medical personnel.)
I do not consider it necessary to diagnose neurally-mediated syncope. Patients will generally have learned ways to avoid syncope over a period of years when standard medical advice did not benefit them. If they did not, you would find them in much worse shape than many are. Repeated episodes of syncope are a recognized bad prognostic sign for a number of conditions. Telling patients who have become cautious of pushing to their limits they are "catastrophizing" when they have actually experienced multiple syncope episodes in the past should count as malpractice.
One proof will be NIH willingness to find out what takes place when PEM/PENE causes anaerobic threshold and VO2Max to drop for 24 hours or more following exercise testing. Replicated research showing there really are patients with this characteristic has been out there for several years. Studying patients who do not have this characteristic may not even be studying the same disease.
If this is considered too expensive, perhaps the NIH might consider dealing with common hemodynamic problems reported by patients: Postural Orthostatic Tachycardia Syndrome and Neurally-Mediated Hypotension. These are not completely distinct. If a patient's heart rate climbs dramatically when they stand, yet pulse pressure (systolic - diastolic) scarcely rises, and/or if pulse pressure drops over a period of 20 minutes of standing, below the threshold normally used in diagnosing heart failure, you have found a physiological problem with direct impact on the patient's ability to perform many common activities and hold a job. Note to medical professionals: most places of employment do not provide facilities to lie down during the work day, and few automobiles can be driven while lying down. Testing for this can be done with equipment already in most medical facilities, (though you may have to replace standard medical personnel.)
I do not consider it necessary to diagnose neurally-mediated syncope. Patients will generally have learned ways to avoid syncope over a period of years when standard medical advice did not benefit them. If they did not, you would find them in much worse shape than many are. Repeated episodes of syncope are a recognized bad prognostic sign for a number of conditions. Telling patients who have become cautious of pushing to their limits they are "catastrophizing" when they have actually experienced multiple syncope episodes in the past should count as malpractice.