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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Media Coverage of Dr. Alters NIH paper, post stories here
- Thread starter LJS
- Start date
again Sick of CFS is so right, we aren't optimists at all! we are realists & our expectations were lower than yours RRRR.
i'm so sorry you are in bed, you really deserve a lot of credit for all do you despite how ill you are. you fight for us so hard & it is appreciated, even if as you stated to me earlier we go about it in different ways.
we both want the same result. that is for sure!
Very kind of you, serenity... thank you.
pictureofhealth
XMRV - L'Agent du Jour
- Messages
- 534
- Location
- Europe
Thank you Parvo and XMRV Global Action! Excellent work!
usedtobeperkytina
Senior Member
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- 1,479
- Location
- Clay, Alabama
usedtobeperkytina
Senior Member
- Messages
- 1,479
- Location
- Clay, Alabama
I am too sick to read the whole thread. But here is a link to HLN: http://www.cnn.com/2010/HEALTH/08/23/chronic.fatigue.virus/index.html?iref=allsearch
It got a short mention on the air.
Tina
It got a short mention on the air.
Tina
glad we got another article on us, but i HATE the stock photos of mice in all these articles.
NPR's show MarketPlace had a short piece on private funding for WPI.
NPR Marketplace: Private funds helped push Chronic Fatigue research
http://marketplace.publicradio.org/d...igue-research/
NPR Marketplace: Private funds helped push Chronic Fatigue research
http://marketplace.publicradio.org/d...igue-research/
Medscape article on Alter paper published Aug 25th
This is a long thread now, sorry if this has been already posted but just found this article on Medscape.
On a quick skim it seems good and thorough, with some interesting stuff at the end on the differences between the Alter & CDC studies that I don't recall seeing mentioned anywhere:
This is a long thread now, sorry if this has been already posted but just found this article on Medscape.
On a quick skim it seems good and thorough, with some interesting stuff at the end on the differences between the Alter & CDC studies that I don't recall seeing mentioned anywhere:
"Switzer said he and his coauthors also temporarily held up publication of their paper but ended up changing nothing.
"We felt it was the very best science we could do," he said.
They were unable to test patients' blood samples from Dr. Alter's group, Switzer said, because those scientists did not have sufficient stored specimens left."
"We felt it was the very best science we could do," he said.
They were unable to test patients' blood samples from Dr. Alter's group, Switzer said, because those scientists did not have sufficient stored specimens left."
Comment on Alter study on Guardian article about STDs (!)
A resourceful person has managed to get an informative comment about the Alter paper and its implications for the UK blood supply and CFS, plus criticism of The Guardian for not covering it, on an article about STDs in England. Here's the link to the article; it's the fifth comment, by "tomstones" (who appears from his avatar to be Woody Allen, in fact).
Click his "recommend" button, my friends! Very creative, that man!
A resourceful person has managed to get an informative comment about the Alter paper and its implications for the UK blood supply and CFS, plus criticism of The Guardian for not covering it, on an article about STDs in England. Here's the link to the article; it's the fifth comment, by "tomstones" (who appears from his avatar to be Woody Allen, in fact).
Click his "recommend" button, my friends! Very creative, that man!
Check out the stock photo for this article on STDs in England, Rrrr (there's a good comment on Alter/XMRV at the end that someone sneaked on - but I was struck by how much more fun you can have with your stock photos on a different topic!).
gu3vara
Senior Member
- Messages
- 339
http://www.radio-canada.ca/nouvelles/Science-Sante/2010/08/24/001-virus-souris-fatigue.shtml
In quebec, canada. Very basic but at least they are talking about it
In quebec, canada. Very basic but at least they are talking about it
Discover magazine article on NIH/FDA paper
http://blogs.discovermagazine.com/8...s-on-new-study-links-the-syndrome-to-a-virus/
Chronic Fatigue Debate Goes on: New Study Links the Syndrome to a Virus
submit to reddit . .
chronic-fatigue-virusChronic fatigue syndrome’s headaches, muscle aches, tiredness, and concentration problems have no known cause, so a paper published online yesterday, in which researchers report finding a type of virus in 87 percent of 37 chronic fatigue syndrome (CFS) patients tested, seems a promising step. But in statements to the media the researchers stress caution in interpreting results. The group also noted that it had delayed publishing the paper, originally meant to appear in the Proceedings of the National Academy of Sciences in May, due to conflicting reports from other scientists.
The National Institutes of Health’s Dr. Harvey Alter, senior author of the paper, said in a conference call with reporters, “It’s an association, but that’s all it is.” He was careful to say the findings don’t prove that a virus causes CFS. [NPR]
Alter’s caution is understandable, especially given recent CFS research history:
October 2009: A virus, XMRV (xenotropic murine leukemia virus–related virus), is found in 68 of 101 CFS patients.
January 2010: XMRV is not found in a British study that tested CFS patients.
July 2010: XMRV is not found in a Center for Disease Control study testing CFS patients.
Though this new study did not find XMRV (a virus also associated with prostate cancer), it found other viruses in the MLV (murine leukemia virus-related viruses) family–viruses not found in July’s Center for Disease Control study. That conflicting study was the reason for the publication’s delay, despite clamoring from some chronic fatigue syndrome patients.
“My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete,” wrote co-author Harvey Alter of the National Institutes of Health, in an email statement to The New York Times last month. “Our goal is not speed, but scientific accuracy,” he wrote. [Scientific American]
As Scientific American reports, some researchers believe that the previous studies’ contradictions may be explained by the variety of patients chosen for the different studies (some much sicker than others), and perhaps the existence of different causes in different geographical regions. But in a commentary (pdf) published along with Alter’s study, a group of researchers led by Valerie Courgnaud called a geographic explanation “baffling.”
Given the syndrome’s confusing past, some researchers now hope to take a different tack: Another way to see if viruses are to blame, they say, is to monitor how chronic fatigue syndrome patients respond to anti-retroviral drugs.
Andrew Mason, a University of Alberta professor, co-wrote the commentary in the journal calling for trials testing anti-retrovirals in CFS patients who are positive for one of the MLV-related viruses. “If the patients improve, after a certain point you stop debating whether it causes the disease and say, the treatment works and we’re going to use it,” said Dr. Mason. [Wall Street Journal]
Pharmaceutical companies such as Merck & Co. and Gilead Sciences Inc. say more research is needed before they start large clinical trials, The Wall Street Journal reports, but others are already trying antiviral treatments on a small scale. A New Mexico doctor and blogger, Jamie Deckoff-Jones, and her 20-year-old daughter started taking a combination of three anti-retrovirals after being diagnosed with XMRV.
Related content:
80beats: Scientist Smackdown: Is a Virus Really the Cause of Chronic Fatigue Syndrome?
80beats: “Yuppie Flu” Isn’t Just in the Head: Chronic Fatigue Syndrome Linked to Virus
80beats: Could Prostate Cancer Be Caused by a Sexually Transmitted Virus?
Discoblog: What’s in a Name? Real Diseases Suffer from Silly Name Syndrome
Image: Whittemore Peterson Institute
August 24th, 2010 12:06 PM Tags: Chronic Fatigue Syndrome, family health, health policy, pharmaceuticals, viruses
by Joseph Calamia in Health & Medicine | 0 comments | RSS feed | Trackback >
http://blogs.discovermagazine.com/8...s-on-new-study-links-the-syndrome-to-a-virus/
Chronic Fatigue Debate Goes on: New Study Links the Syndrome to a Virus
submit to reddit . .
chronic-fatigue-virusChronic fatigue syndrome’s headaches, muscle aches, tiredness, and concentration problems have no known cause, so a paper published online yesterday, in which researchers report finding a type of virus in 87 percent of 37 chronic fatigue syndrome (CFS) patients tested, seems a promising step. But in statements to the media the researchers stress caution in interpreting results. The group also noted that it had delayed publishing the paper, originally meant to appear in the Proceedings of the National Academy of Sciences in May, due to conflicting reports from other scientists.
The National Institutes of Health’s Dr. Harvey Alter, senior author of the paper, said in a conference call with reporters, “It’s an association, but that’s all it is.” He was careful to say the findings don’t prove that a virus causes CFS. [NPR]
Alter’s caution is understandable, especially given recent CFS research history:
October 2009: A virus, XMRV (xenotropic murine leukemia virus–related virus), is found in 68 of 101 CFS patients.
January 2010: XMRV is not found in a British study that tested CFS patients.
July 2010: XMRV is not found in a Center for Disease Control study testing CFS patients.
Though this new study did not find XMRV (a virus also associated with prostate cancer), it found other viruses in the MLV (murine leukemia virus-related viruses) family–viruses not found in July’s Center for Disease Control study. That conflicting study was the reason for the publication’s delay, despite clamoring from some chronic fatigue syndrome patients.
“My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete,” wrote co-author Harvey Alter of the National Institutes of Health, in an email statement to The New York Times last month. “Our goal is not speed, but scientific accuracy,” he wrote. [Scientific American]
As Scientific American reports, some researchers believe that the previous studies’ contradictions may be explained by the variety of patients chosen for the different studies (some much sicker than others), and perhaps the existence of different causes in different geographical regions. But in a commentary (pdf) published along with Alter’s study, a group of researchers led by Valerie Courgnaud called a geographic explanation “baffling.”
Given the syndrome’s confusing past, some researchers now hope to take a different tack: Another way to see if viruses are to blame, they say, is to monitor how chronic fatigue syndrome patients respond to anti-retroviral drugs.
Andrew Mason, a University of Alberta professor, co-wrote the commentary in the journal calling for trials testing anti-retrovirals in CFS patients who are positive for one of the MLV-related viruses. “If the patients improve, after a certain point you stop debating whether it causes the disease and say, the treatment works and we’re going to use it,” said Dr. Mason. [Wall Street Journal]
Pharmaceutical companies such as Merck & Co. and Gilead Sciences Inc. say more research is needed before they start large clinical trials, The Wall Street Journal reports, but others are already trying antiviral treatments on a small scale. A New Mexico doctor and blogger, Jamie Deckoff-Jones, and her 20-year-old daughter started taking a combination of three anti-retrovirals after being diagnosed with XMRV.
Related content:
80beats: Scientist Smackdown: Is a Virus Really the Cause of Chronic Fatigue Syndrome?
80beats: “Yuppie Flu” Isn’t Just in the Head: Chronic Fatigue Syndrome Linked to Virus
80beats: Could Prostate Cancer Be Caused by a Sexually Transmitted Virus?
Discoblog: What’s in a Name? Real Diseases Suffer from Silly Name Syndrome
Image: Whittemore Peterson Institute
August 24th, 2010 12:06 PM Tags: Chronic Fatigue Syndrome, family health, health policy, pharmaceuticals, viruses
by Joseph Calamia in Health & Medicine | 0 comments | RSS feed | Trackback >
LJS
Luke
- Messages
- 213
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- East Coast, USA
thanks Rrrr, updated post, also there is a new WSJ blog post! I added that to the first post as well: http://blogs.wsj.com/health/2010/08/26/betting-on-x-as-in-xmrv-with-a-big-ticket-research-center/
It's Alec Guinness as George Smiley in "Tinker, Taylor, Soldier, Spy". Very apt when it comes to dealing with the CDC and the Wessley school.
justinreilly
Senior Member
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- 2,498
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- NYC (& RI)
The FDA Q&A page is bad and the source of the Reuters piece.
justinreilly
Senior Member
- Messages
- 2,498
- Location
- NYC (& RI)
Komaroff should have stopped them from using the Holmes criteria for this study (since it was his samples they used- collected in 1994 when Holmes was in use). That's ridiculous.
LJS
Luke
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- 213
- Location
- East Coast, USA
right click (on a Mac hold down control) on the link and click "copy link location" (firefox) or "copy shortcut" (IE) or just goto the link then copy the address out of the address bar