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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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You may wonder why the CAA treats XMRV the way they do... So:

Cort

Phoenix Rising Founder
There is no one here that I know of that is being crazy or stupid. McClure is manipulating those around her and spreading misinformation, because her research was not good enough. It's best to ignore her.

Again I don't think you or I have the faintest idea of what Dr. McClure or anybody else is thinking and I would appreciate it if you'd stop acting as if you know what is going on in someone else's head. You have a habit of using really loaded words. This is my interpretation of what happened. Dr. McClure did a study and then she interpreted the results of that study. She either did that correctly or incorrectly. Then she stated what her interpretation of the study was. Then researchers argued about whether that was correct. Over time the court of scientific opinion will determine if she was correct or not and they do seem to be doing that.

That is not 'manipulation" - that is one researcher stating what her interpretation of the evidence was. I think its much better to deal with what we know.
 

V99

Senior Member
Messages
1,471
Location
UK
This forum is not about repeating again and again and again your strongly held opinions as if they were fact. You have repeatedly said Dr. Vernon was wrong about her statementl. If that it is true then either post your evidence for your assertion or stopping making the statement. This is a "forum' - not a platform for someone to state their beliefs.

Honestly I feel like I am paying my head up against the wall again and again. Jennie has stated the CAA has no contracts with the government!

But it is ok to continue to disagree. If you interpret it as fact, well what has that got to do with me.

Vernon's statement cannot be true, because the research would never be able to conclude that a retrovirus would not be responsible. It's not hard to understand. Research can only demonstrate what it aim's to study, not what it has not studied, not what it is unable to study. It is not my belief, it is how science works. It is also not possible to post the evidence because that would require posting every piece of research into viruses and retroviruses. And never mind if anyone would have the time to do this, they will not state that a retrovirus is not the cause for ME. Only that they looked at this or that, and could find no link with that testing method.

If I have another question about the CAA I will ask, thank you for answering, I will have missed Jennie's answer. Surely you are not saying that questions about the CAA are out of order on this forum?
 

V99

Senior Member
Messages
1,471
Location
UK
Again I don't think you or I have the faintest idea of what Dr. McClure or anybody else is thinking and I would appreciate it if you'd stop acting as if you know what is going on in someone else's head. You have a habit of using really loaded words. This is my interpretation of what happened. Dr. McClure did a study and then she interpreted the results of that study. She either did that correctly or incorrectly. Then she stated what her interpretation of the study was. Then researchers argued about whether that was correct. Over time the field will determine if she was correct or not.

That is not 'manipulation" - that is one researcher stating what her interpretation of the evidence was.

Nothing in my post indicates what McClure is thinking. Her comments on a radio program and in a scientific journal, about how patients were behaving, was a deliberate attempt to spread misinformation about ME patients. This is nothing to do with her research. However, it is clear that it was a quick and dirty study and needed further exploration. she chose not to do this. This person has supposedly left the research of CFS now, so why bother with her.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Gracenote it sounds like you are in favor of hitting back - if you're hitting the right person.

Nope. No hitting. Didn't say that or insinuate that. I actually said, "I'm not in favor of anyone hitting back."


7C9D3EAD.jpg


Always good advice. Thanks Mom.
 

Sam Carter

Guest
Messages
435
....

Vernon's statement cannot be true, because the research would never be able to conclude that a retrovirus would not be responsible.....

... is your interpretation of what Dr. Vernon wrote -- it isn't mine. Can we move on, please?
 

SOC

Senior Member
Messages
7,849
businessPingback

Dr. Vernon's writings were not 'comments' they were part of a scientific paper. If you can't handle a researcher accurately reflecting the state of the research at the time and you hold that researchers statements against them as if they were written today than you lack credibility in my opinion. You're taking things out of context.

Whether the CAA would fund retroviral work if XMRV does not pan is a question none of us can answer so please stop asking us that question and ask the CAA it.

Verbally abusing our allies versus verbally abusing our non-allies? I don't think it's good or helpful to verbally abuse anybody. Anybody who goes around verbally abusing researchers or groups or whoever to get their rocks off ( because that is what they're doing) is not my ally.

CFIDS Association being too close to the federal government? The CAA having too many contacts in the federal government! What in the world are you talking about? I hope they have as many contacts in the federal government as they can. I want them to have contacts all over the place. I want them to be speaking to as many people they can. Do you not want them to have contacts in the federal government.

What are their ties to the federal government? Are they beholden to them? The answer to that is absolutely not - they don't receive any funding from them -l which has been mentioned many times before - they are beholden to the patients.

You keep talking about a conspiracy to stop XMRV. That is a very loaded word. We really try to stay away from the 'conspiracy theory' scenario's in order to promote a serious discussion of the issues. If you have evidence of some underhanded conspiracy against XMRV then please present it or talk about something else. What I see are competing camps of researchers with different opinions on an unresolved issue each battling for their own opinion. Yes its not pretty, yes we'd rather have one side win but a conspiracy is an entirely different thing; it suggests manipulating evidence, stopping evidence from being presented, etc.

Thanks, Cort! You covered a lot of points I think needed to be addressed. I appreciate your stance in favor of the truth (good or bad) and against verbal abuse of anybody.
 

omerbasket

Senior Member
Messages
510
Dr. Vernon's writings were not 'comments' they were part of a scientific paper
You are 100% right!

If you can't handle a researcher accurately reflecting the state of the research at the time and you hold that researchers statements against them as if they were written today than you lack credibility in my opinion. You're taking things out of context.
Cort, if you can't handle arguing for someone without changing what they said, then I think you are the one who lack's credibility here.

Dr. Vernon said:
the outcomes of pathophysiological research have generally featured delineation of what CFS is not - a muscle disorder, a retroviral infection, a recognised psychiatric disorder, a known autoimmune disorder, etc.

I'll use synonyms in order to show this sentence again, in other words. It's not as accurate as the original quote, but since you're changing the original quote into what you want it to sound like, I'll show you that the dictionary does not accept it:
the outcomes of pathophysiological research have mostly presented a description of what CFS is not - a muscle disorder, a retroviral infection, a recognised psychiatric disorder, a known autoimmune disorder, etc.

So, Dr. Vernon did not "accurately reflected the state of the research at the time", not only because there was (and still is, ofcourse) no proof that "CFS is not a retroviral infection", but also because she did not talk about "a state of research at the time" - she said that the research is description of ME/CFS by the studies until than described it as an illness that is not caused by a retrovirus - although there was no study that described that (not finding something does not mean that it's not there, and every scientist knows that) and there was also a study that wasn't replicated but found that some kind of a retrovirus is linked to ME/CFS.

I also didn't see where V99 "holded researchers statements against them as if they were written today". We do not say that it was written today. This would have been a very silly thing to do, and I don't think anyone at the CAA is silly. We say that:
1) Dr. Vernon mislead people with her peculiar statment in that document.
2) We obviously supsect that maybe she's biased. I mean, after all, she said that "CFS is not [...] a retroviral infection". Probably she was way more sure about that than about CFS being a psychiatric condition, since she only said that it is not a "recognised psychiatric disorder".
3) We can obviuosly see that she have an interest in making research about retroviruses causing ME/CFS to disappear - because what if the public knows that she have already stated in the past that research show that it is not a retroviral infection? Would there be so much difference between her statement and "Dr." Reeves statements about CFS not being connected to viruses?
4) We wonder if there is such a big difference between her opinion's and "Dr." Reeves opinions. He said in the article to which I've linked before that CFS is not connected to viruses and that outbreaks of CFS does not occur, it's just a case of hysteria. She says that "CFS" (as she for some reason calls it, although even the organization of which she is from calls himself "The CFIDS Associatiob of America") "is not [...] a retroviral infection", but she does not dismiss the option of it being a psychiatric condition and only say that it's not a "recognised" one.
 

jace

Off the fence
Messages
856
Location
England
Anyone can move on, at any time. Just post your own viewpoint, and allow others to post theirs. It's only common courtesy. I too am troubled by Dr. Vernon's viewpoint, as expressed in the July 2009 paper, and I do not think that V99 is being unreasonable in analyzing that statement. If you think differently, then say so. That's fine, just don't try to tell anyone else what to think or what to write.
 

SOC

Senior Member
Messages
7,849
** YAWN**
So, how's the weather in LA? Pretty hot here. Heat advisories all over....
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
High 60s, sunny and clear. We've had one of the coolest summers on record, oddly enough. The normal May/June overcast continued well into July, which was actually kind of depressing, but at least we've got some sunshine now.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Perhaps Let It Run Its Course

Moderator: The tone in this thread is becoming increasingly antagonistic. Please would people move on? Otherwise, I will lock the thread.

Hi Martlet,

I couldn't begin to understand half of what's being said on this thread, so I don't have an opinion one way or another as to who might have a more accurate perception. But it seems others do, and seem to have their own reasons for this continuing discussion. So why not let them?

I guess I wonder why you and others are continually saying to move on. If posters want to exchange posts that may border on antagonistic, why should anybody else care? I would think this thread will eventually run it's course when those participating decide they've had enough. To lock it out seems like it would just spill over into other threads and prolong what you may be trying to prevent.

In the mean time, I'm gathering a bit of insight for myself on some of these topics, but also kind of enjoying the entertainment aspect of it all. I thought Gracenote's picture of the expressive little girl was great.

Not trying to be critical; just philosophical. I think. :Retro smile:

Best, Wayne
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
I guess I wonder why you and others are continually saying to move on.

I can't speak for others but I am saying it because I am tired of my inbox being packed with reported posts about comments in this thread, and I have to check each and every single one of them.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
I'm truly sorry if I alienated anyone by mentioning the nice cool, sunny, clear weather that we are having here in Los Angeles. It was not my intention to offend.