Phoenix Rising Articles
Proteins on the Brain': A Breakthrough for ME/CFS?
Phoenix Rising Team submitted a new blog post:
Proteins on the Brain': A Breakthrough for ME/CFS?
Posted by Cort Johnson
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In 2008 I participated in Dr. Baraniuk’s spinal tap study at Georgetown University in Washington, D.C. Some readers may remember how exciting Dr. Baraniuk’s first proteome study was; it was the easy winner of the Phoenix Rising Paper of the Year.
The study suggested that chronic fatigue syndrome (ME/CFS) patients had unusual proteins in their cerebral spinal fluid. These results suggested that clumps of abnormally folded proteins could be causing small punctures in the blood vessels of ME/CFS patients brains. These punctures, in turn, could cause blood to leak out into the brain causing the...
Proteins on the Brain': A Breakthrough for ME/CFS?
Posted by Cort Johnson
Discuss this article on the forums
The study suggested that chronic fatigue syndrome (ME/CFS) patients had unusual proteins in their cerebral spinal fluid. These results suggested that clumps of abnormally folded proteins could be causing small punctures in the blood vessels of ME/CFS patients brains. These punctures, in turn, could cause blood to leak out into the brain causing the...
Spinal Tapping For ME/CFS
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Spinal Tapping For ME/CFS
Posted by Cort Johnson
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Written by Cort
I’d contacted Dr. Ravindran earlier and mentioned I was coming out to DC but we fell out of contact and I assumed my chances of getting the study in while I was in town were nil. It didn’t help that I waited for several days before I called but several hours after I called to tell him I was in towns there I was in the research wing of the hospital giving blood, whooping it up doing pulmonary tests and scrunching my arm muscles while Dr. Baraniuk aimed this weird horn at my nose.
As the tests dragged on past normal business hours the research section of the hospital emptied out. When Dr. Ravindran, Dr...
Spinal Tapping For ME/CFS
Posted by Cort Johnson
Discuss this article on the forums
Written by Cort
As the tests dragged on past normal business hours the research section of the hospital emptied out. When Dr. Ravindran, Dr...
An East Coast WPI? Support the New Jersey NEID by Cort Johnson
Phoenix Rising Team submitted a new blog post:
An East Coast WPI? Support the New Jersey NEID by Cort Johnson
Posted by Cort Johnson
Marly Silverman and others at PANDORA and the Landford Foundation have big plans. She wants nothing less than to build the first NeuroEndocrineImmune Center for the research, treatment and education into diseases like Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, multiple chemical sensitivity and others in New Jersey. (Think the WPI's Neuro-Immune Institute with the 'Endocrine' added. - think a WPI on the east coast)
NEID is taking a multi-disease approach because it believes that "the discoveries and advances made in anyone of the NEID's, will be applicable at beneficial to the other NEID's, thereby bringing researchers closer to a cure".
Pandora and the Landford Foundation have done their groundwork in New...
An East Coast WPI? Support the New Jersey NEID by Cort Johnson
Posted by Cort Johnson
NEID is taking a multi-disease approach because it believes that "the discoveries and advances made in anyone of the NEID's, will be applicable at beneficial to the other NEID's, thereby bringing researchers closer to a cure".
Pandora and the Landford Foundation have done their groundwork in New...
Muddy Waters: XMRV and CFS
Phoenix Rising Team submitted a new blog post:
Muddy Waters: XMRV and CFS
The patient community has been on a wild ride lately. No, no studies have been published but patients are digging deeper into the studies and coming up with some surprising findings.
Three, er… make that two CFS XMRV validation studies?
After digging deeper into the cohort from the last Dutch study Parvofighter on the Phoenix Rising Forums has uncovered some disquieting facts about them. We knew that they were defined using the Oxford definition - which is not optimal, for sure - but what Parvofighter uncovered appears to go beyond using a poor definition.
The samples from that study were gathered a long time ago - prior to the...
Muddy Waters: XMRV and CFS
Three, er… make that two CFS XMRV validation studies?
After digging deeper into the cohort from the last Dutch study Parvofighter on the Phoenix Rising Forums has uncovered some disquieting facts about them. We knew that they were defined using the Oxford definition - which is not optimal, for sure - but what Parvofighter uncovered appears to go beyond using a poor definition.
The samples from that study were gathered a long time ago - prior to the...
Scandal in BMJ’s XMRV/CFS Research: BMJ and XMRV Unplugged
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Scandal in BMJ’s XMRV/CFS Research: BMJ and XMRV Unplugged
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By Parvofighter
PART 1
Much has been made of the “well-characterized” or “well-defined” patient cohorts (http://www.bmj.com/cgi/content/abstract/340/feb25_1/c1018) of the failed XMRV-in-ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) replication attempts. “Well characterized” somberly implies that the patients studied were robustly and meaningfully comparable to those in the landmark Science XMRV study. Namely: Canadian/Fukuda Criteria Chronic Fatigue Syndrome patients with severe disability, reproducible immune abnormalities, cognitive deficits, prolonged, disabling fatigue, low V02 max, and...
Scandal in BMJ’s XMRV/CFS Research: BMJ and XMRV Unplugged
Discuss this article on the forums
By Parvofighter
PART 1
Much has been made of the “well-characterized” or “well-defined” patient cohorts (http://www.bmj.com/cgi/content/abstract/340/feb25_1/c1018) of the failed XMRV-in-ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) replication attempts. “Well characterized” somberly implies that the patients studied were robustly and meaningfully comparable to those in the landmark Science XMRV study. Namely: Canadian/Fukuda Criteria Chronic Fatigue Syndrome patients with severe disability, reproducible immune abnormalities, cognitive deficits, prolonged, disabling fatigue, low V02 max, and...
Feeling the Wind on My Face Again (Ampligen Chronicles Trt#16)
Phoenix Rising Team submitted a new blog post:
Feeling the Wind on My Face Again (Ampligen Chronicles Trt#16)
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Written by Kelvin Lord
Treatment #16 - by Kelvin Lord
Today was the best day I've had in a long time. Like my old 1976 Cutlass Supreme years ago, my engine was humming, my hydramatic transmission was smooth as butter, and I even had the "new car smell" on me. This old vehicle actually felt like all cylinders were firing with all four barrels opened up for a while today! Figuratively, I felt the wind on my face again today! And I couldn't be happier.
What was my secret? Of course by reason of the title of my blog, I'll start with the Ampligen. I am now...
Feeling the Wind on My Face Again (Ampligen Chronicles Trt#16)
Discuss this article on the forums
Written by Kelvin Lord
Treatment #16 - by Kelvin Lord
Today was the best day I've had in a long time. Like my old 1976 Cutlass Supreme years ago, my engine was humming, my hydramatic transmission was smooth as butter, and I even had the "new car smell" on me. This old vehicle actually felt like all cylinders were firing with all four barrels opened up for a while today! Figuratively, I felt the wind on my face again today! And I couldn't be happier.
What was my secret? Of course by reason of the title of my blog, I'll start with the Ampligen. I am now...
A WPI in New Jersey? Support the NEI Center!
Phoenix Rising Team submitted a new blog post:
A WPI in New Jersey? Support the NEI Center!
Posted by Cort Johnson
Written by Cort
Marly Silverman and others at PANDORA and the Landford Foundation have big plans. She wants nothing less than to build the first NeuroEndocrineImmune Center for the research, treatment and education into diseases like Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, multiple chemical sensitivity and others in New Jersey. (Think the WPI's Neuro-Immune Institute with the 'Endocrine' added. - think a WPI on the east coast)
NEID is taking a multi-disease approach because it believes that "the discoveries and advances made in anyone of the NEID's, will be applicable at beneficial to the other NEID's, thereby bringing researchers closer to a cure".
Pandora and the Landford...
A WPI in New Jersey? Support the NEI Center!
Posted by Cort Johnson
Written by Cort
NEID is taking a multi-disease approach because it believes that "the discoveries and advances made in anyone of the NEID's, will be applicable at beneficial to the other NEID's, thereby bringing researchers closer to a cure".
Pandora and the Landford...
Emergency at the Emergency Room
Phoenix Rising Team submitted a new blog post:
Emergency at the Emergency Room
Posted by Cort Johnson
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Written by Cort
Is there any more terrifying place for CFS patient to be than the emergency room the hospital? Sure, emergency rooms are upsetting for everybody but to be in emergency room knowing that the ER personnel’s biases towards you could leave you with substandard care, at the very time you need good care, is frightening . In an emergency room you want to be able to have trust but trust is a hard thing to come by when chronic fatigue syndrome patients step into almost any medical facility. No wonder that Dr. Bell strongly urges chronic fatigue syndrome patients NOT to tell ER personnel that they have...
Emergency at the Emergency Room
Posted by Cort Johnson
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Written by Cort
XMRV and CFS - Check, Check, Check
Phoenix Rising Team submitted a new blog post:
XMRV and CFS - Check, Check, Check
Posted by Cort Johnson
The past few months have not been easy for XMRV. The head of the Dutch study flatly stated that he believed the WPI's samples had been contaminated. Dr. Shepard's assessment was nothing if not gloomy and Dr. Vernon's seemed to suggest that if the WPI's results stood up that they probably applied only for a select few patients.
Meanwhile the work at the WPI appears to be continuing as before. Certainly from the outside we don't any sense that the discovery is falling apart; Dr. Mikovits is as public as ever and is continuing to talk at conferences and before groups. We just learned, in fact, that she'll publicly be expanding the WPI's XMRV work into autism - hardly the behavior of a researcher who feels in doubt of her work.
So let's look at what...
XMRV and CFS - Check, Check, Check
Posted by Cort Johnson
The past few months have not been easy for XMRV. The head of the Dutch study flatly stated that he believed the WPI's samples had been contaminated. Dr. Shepard's assessment was nothing if not gloomy and Dr. Vernon's seemed to suggest that if the WPI's results stood up that they probably applied only for a select few patients.
Meanwhile the work at the WPI appears to be continuing as before. Certainly from the outside we don't any sense that the discovery is falling apart; Dr. Mikovits is as public as ever and is continuing to talk at conferences and before groups. We just learned, in fact, that she'll publicly be expanding the WPI's XMRV work into autism - hardly the behavior of a researcher who feels in doubt of her work.
So let's look at what...