Hope123
Senior Member
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Yes, you can earmark funds at the CAA for only research. I have a friend who has been doing this for years as he doesn't like other aspects of the CAA.
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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The reason for caution is the need to establish scientifically valid conclusions. In orderly to correctly identify a potential biomarker from CSF, one must be able to control for health conditions that can result in similar levels for a given protein or proteins. Everything from major depression to oxidative stress can result in abnormal CSF protein levels, including some of the proteins that were found to be abnormally elevated in this study. The task of identifying a protein abnormality unique to CFS involves making certain that a given abnormality is not being caused by misdiagnosed patients or by a co-existing condition. [That process, especially from a pool of candidates this large, will very likely take years.] Two things that need to be done about this are: the use of increasingly exclusive selection criteria (e.g. use the Canadian Consensus criteria or equivalent/ require PEM as an inclusion criterion, more aggressively screen out psychiatric conditions, etc), and compare the CSF of this more specific ME/CFS cohort with cohorts of subjects with depressive disorders, non-CFS chronic pain conditions, non-CFS oxidative stress, etc.
Arrggggh.
I'm wondering if directed donations to the CAA might be possible - earmarked ONLY for the research initiatives and with the specification that such dollars are not to be used under any circumstances for CEO salary. I know one can make directed donations to nonprofits; I've done it myself; but I have the impression that it's more or less on the honor system that the nonprofit actually directs your dollars where you specify.
Well, 200 in the 'normal' group - plus the finding that repeated samples over 4 weeks from the same 10 volunteers produced consistent results - does make this look very interesting indeed. Thanks very much for this.Eleven is a small number but somewhere it was mentioned that they have tested hundreds of normal subjects to create a standard healthy profile and that these eleven healthy controls conformed to the expected healthy profile. Still, more needs to be done. I'll look for reference. This is not the first CSF study done by Schutzer.
Establishing the proteome of normal human cerebrospinal fluid.
Schutzer SE, Liu T, Natelson BH, Angel TE, Schepmoes AA, Purvine SO, Hixson KK, Lipton MS, Camp DG, Coyle PK, Smith RD, Bergquist J.
PLoS One. 2010 Jun 11;5(6):e10980.
Some do seem to be the result of inflammatory response in both illnesses. As for detection of XMRV in CSF, others have reported that a preliminary paper on a CSF study with negative results has been pulled from publication. Things are happening offstage....Since she revealed XMRV was found in the CSF of CFS patients (at the Santa Rosa talk, as someone mentioned), how does that connect with proteins that were found in the spinal fluid study? Can/does XMRV create these kind of proteins? Or are they the result of the inflammatory response?
Anybody know?
Allarums and excursions in the night.
Some do seem to be the result of inflammatory response in both illnesses. As for detection of XMRV in CSF, others have reported that a preliminary paper on a CSF study with negative results has been pulled from publication. Things are happening offstage.
Stage directions from Shakespeare:
A recent study I saw somewhere I can't remember concluded that it now takes an average of 17 years for new research to sift down to the level of the practicing physician in the USA. This is one more reason to become an expert in our illnesses and to find a doctor who will actually read research we bring to him/her.
This line jumped out at me in this particular article on the subject.
"Because some of the proteins found in the spinal fluid of chronic fatigue syndrome patients also are implicated in Alzheimer's and Parkinson's diseases, the results support the idea that chronic fatigue syndrome has an underlying neurological cause."
from:
PNNL scientist leads research into chronic fatigue syndrome treatment
http://www.tri-cityherald.com/2011/03/11/1403487/pnnl-scientist-leads-research.html#ixzz1GMJu6tWC
As SilverbladeTE remarked, syphilis causes serious mental illness. The fight over that disease also required generations. Vertical transmission of infection produced enormous infant mortality and numerous complications typically attributed to genetics.
I want to point out that both syphilis and Lyme disease are known to be caused by spirochetes. An underlying viral cause is now suspected for chronic Lyme disease. At the time syphilis became curable, it would have been impossible to detect a viral disease without unique signs. An undetected cofactor is a real possibility, and would help explain an historical mystery concerning the origins of epidemic syphilis.
Source: BioTechniques
Date: April 6, 2011
Author: Lisa Grauer
URL:
http://www.biotechniques.com/news/P...n-disease-diagnosis/biotechniques-313643.html
Proteome-wide association studies: the new hope in disease diagnosis