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IASCFS/ME - Science and the Hold on XMRV Studies

CBS

Senior Member
Messages
1,522
bakercape;107208Is there some said:
rule about not attacking the CAA or questioning them on this website? It seems like some go bananas when the CAA is questioned. I haven't read this whole thread but it seems to smell of censorship. The CAA is not beyond doing something negative and I don't think is beyond questioning on anything. I thought this forum was about sharing thoughts and ideas. Why can't someone question how the CAA conducts itself or operates without being bashed for being out of bounds?

I suggest you go back and read the thread.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
rule about not attacking the CAA or questioning them on this website? It seems like some go bananas when the CAA is questioned. I haven't read this whole thread but it seems to smell of censorship. The CAA is not beyond doing something negative and I don't think is beyond questioning on anything. I thought this forum was about sharing thoughts and ideas. Why can't someone question how the CAA conducts itself or operates without being bashed for being out of bounds?

Totally agree bakerscape.
 

CBS

Senior Member
Messages
1,522
Totally agree bakerscape.

Funny, I was going to comment that there seems to be a predisposition amongst some people here to attack the CAA and then claim that everyone else was being over sensitive. I seem to have this response every time someone pisses on my leg and then tries telling me that it's just raining. There is a double standard and it starts with attacks on the CAA.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
No, extending courtesy at all times is a key guideline for the forums.

Regarding REOFLMAO and other comments - working with the government in contrast to the needs of the patients is pretty severe and damning criticism of any organization and I would request that evidence be provided before any organization is labeled that way.

CAA and Government Funding - We are looking for rigorous inquiries are we not? For starters you have to ask if the CAA, in this case, needs government funding to run its organization or receives any government funding to do that. I believe the answer is no. If that's true they you have to ask what the CAA has to gain by giving preference to the government over the clientele that delivers all its funding. What do you get by tweaking your funders - the CFS community - in order to get in with the government? What is the cost/benefit analysis of that?

In fact, the answer has always been no. The CAA received government funding after it won the bid to deliver the media campaign on CFS....... It won a contract to deliver a campaign and then it used the money from that contract to deliver the campaign.

That money was used the run the media campaign
The CFIDS Association uses money from the CFS Community to run the CFIDS Association.

The two have nothing to do with each other. The idea that the CAA uses government money to run the organization has always, to my knowledge, been completely wrong yet that idea has pervaded some community for as long as I remember.

You have to figure out a different reason why the CAA is pretty conservative in some areas.

Quote Originally Posted by justinreilly
This post leaves me slack-jawed. The level of your denialism is staggering.

This post leaves me dumbfounded. Your lack of clarity is staggers me (as well). Just what points stagger you?

The fact that CDC provided a lot of the CAA's 'business' back then and consequently wrote checks for funds CAA allocated partially to its salaries and overhead, means that CAA was beholden to CDC. Since the purpose of the CDC "CFS" program is to obstruct science and persecute patients, this is a conflict of interest.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
If I was the CAA I'd feel inclined to create a sight like TakeOurJobs.com where the United farm workers have created a sign-up form where unemployed American citizens (especially those angry about immigration issues) can apply for jobs as farm laborers. After a month THREE people (out of all the presently unemployed) had signed up.

This is an insulting analogy comparing lazy bigoted red-necks to a patient population too disabled to even take care of basic every day needs, let alone advocate for themselves.

I agree that this comparison is obviously inapposite.
 

Sean

Senior Member
Messages
7,378
justinreilly says:

Thus the delay is most surely caused by venal motives

and this

Since the purpose of the CDC "CFS" program is to obstruct science and persecute patients,

Plus this from another recent thread:

CDC and NIH will do anything to stop the science and crush us. This is beyond a shadow of a doubt as we all know.

The absolute certainty of your interpretations is troubling, especially given the weak evidence base you invoke to justify them.

Where is your margin for error?

What if you are wrong? What are the possible adverse consequences of that? Do you bear any responsibility for them?
 

CBS

Senior Member
Messages
1,522
The fact that CDC provided a lot of the CAA's 'business' back then and consequently wrote checks for funds CAA allocated partially to its salaries and overhead, means that CAA was beholden to CDC. Since the purpose of the CDC "CFS" program is to obstruct science and persecute patients, this is a conflict of interest.

The CDC has provided funding to the CAA in the past and I do think that this has created issues with the CAA being able to take stances that conflict with the CDC. I wouldn't mind a review of the whole history as well as a statement by the CAA on this. That said (and I have said that I don't agree with everything the CAA has done or is doing) I was very pleased with Dr. Vernon's response to the recent CDC study.

As for the double standard, I also wouldn't mind a discussion of the double standard that accepts sarcasm and 'digs' that close down communication as opposed to good faith efforts to communicate and correct (see JSpotila's response to questions about CAA comment on a slide presented at the blood safety meeting - "false positives").

One step further, I know that I've posted comments about subjects like W Reeves and company that wouldn't pass the forum rules. Is this OK simply because WR seems to be a universally distrusted figure in this community? It's not something I'd feel comfortable defending.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I just have a question. How would the CAA even be able to speculate when the NIH study will be out when no one else apparently knows. They also seemed to gain inside information when the study was initially held up. So where do they seem to be getting all this info? The CDC or HHS or the NIH. Maybe they could just tell us the date and give us the information that was in the original paper, since they seem to know so much already.

This is a simple attack; it offers nothing - please make your posts constructive.

You might ask Mindy Kitei the same thing since she reported the paper would be published with positive results. Everybody is using whatever sources they have. Mindy has some, Hilary Johnson has some, the CAA has some....

I don't have a problem with CAA's handling of this discreet issue. I agree with CBS that they can't reveal anything passed on in confidence.

But I don't think Robyn's post was inappropriately attacking CAA. I think forum members should be able to raise questions about CAA and other CFS institutions.
 

CBS

Senior Member
Messages
1,522
I agree that this comparison is obviously inapposite.

Actually, it's quite apposite.

In the CAA example you have a lot of people willing to criticize but unwilling match words with constructive action.

In the UFA example you have a lot of people willing to criticize and unwilling match words with constructive action.

Pointing out the chasm between their words and unwillingness to actually put up or shut up was the point of the UFA web-site and I applaud them for doing so in such a creative manner.
 

V99

Senior Member
Messages
1,471
Location
UK
In the CAA example you have a lot of people willing to criticize but unwilling match words with constructive action.

Lots of people are doing and also asking questions. Asking questions is also doing.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
The absolute certainty of your interpretations is troubling, especially given the weak evidence base you invoke to justify them.

Where is your margin for error?

What if you are wrong? What are the possible adverse consequences of that? Do you bear any responsibility for them?

I think the avalanche of evidence contained in Osler's Web and oslersweb.com, in Mindy Katei's blog and elsewhere clearly leads to my conclusions. I strongly believe reasonable people fully apprised of this evidence would not disagree.

If I am wrong, of course I take responsibility for my statements. I do not throw such accusations around lightly. It is only after carefully reviewing the available evidence, that I feel comfortable stating these conclusions with certainty.

How is the evidence base weak? It is very strong and all points in one direction.
 

CBS

Senior Member
Messages
1,522
Lots of people are doing and also asking questions. Asking questions is also doing.

It's not the questions that I have concerns about. Not in the least. It when a question isn't really a question but an accusation and an attack.

Eg.
I don't get it, how did the CDC arrive at the interpretations they used when citing articles in support of their conclusions that "personality disorders" precede CFS. And was it appropriate for the CDC to classify certain personaility characteristics - that could be an adaptive response to physical illness - as "disorders?"

VS.

What a ridiculously self-serving narrow minded load.

My sense was that no one even considered approaching the CDC with a list of questions based upon the assumption (and deservedly so) that the CDC is pretty intransigent on this. Sarcasm is a sign that communication has broken down and the aim is to belittle, not engage. While we may not all get what we want (or at various times we all are disappointed) The CAA is far from unwilling engage or reflect.

So in summary, good faith questions ARE doing.

Sarcasm and snide remarks are doing damage.
 

Cort

Phoenix Rising Founder
The fact that CDC provided a lot of the CAA's 'business' back then and consequently wrote checks for funds CAA allocated partially to its salaries and overhead, means that CAA was beholden to CDC. Since the purpose of the CDC "CFS" program is to obstruct science and persecute patients, this is a conflict of interest.

Justin you're still mixing apples and oranges; there is a distinction between a business ie the CFIDS Association getting contract to run a program; ie the Media Campaign and the rest of the Associations business.

The contract was to run the Media campaign - but you are suggesting the contract was also to run the CFIDS Association? If so I suggest that you complain to the CDC of the fraudulent use of funds the CAA was engaging in.

If I paid you money to mow my lawn a) I wouldn't give you more money than was necessary to do that and b) I wouldn't expect you to mow half of it and then use the funds for something else but that is what you are suggesting.

History has shown that that entire proposition, that the CAA was dependent on funds from the CDC to run its operation, - which never made sense anyway, is false. The Media campaign is over, the CAA is not doing any business iwth the CDC or any other govt entities - and it has come out of the worst recession in our memory in relatively good shape despite having the media campaign money's disappear right smack in the middle of it.



By the way, this statement
"the purpose of the CDC "CFS" program is to obstruct science and persecute patients"
is not true. Are you really suggesting that the brass of the CDC told Bill Reeves "Your job is to obstruct good CFS science and persecute those people with CFS". Do you really think we are that important to them - that they would organize a campaign to persecute us? And if they did why would they put the hothead Bill Reeves in charge?

I don't believe the CDC is trying to persecute CFS patients. I think they think that they're right and they think Peterson and Mikovits are wrong, wrong, wrong.....There's no need to create this governmental conspiracy theory....this is the clash between two idea systems in a very big, poorly defined field...what else would you expect at a time like this when so much is uncertain?
 

Cort

Phoenix Rising Founder
Funny, I was going to comment that there seems to be a predisposition amongst some people here to attack the CAA and then claim that everyone else was being over sensitive. I seem to have this response every time someone pisses on my leg and then tries telling me that it's just raining. .

:tear::tear::tear::tear::tear:

that was just too funny. The problems regarding the conversations about the CAA are not 'conversations about the CAA' but the fact that there were what appeared to be sarcastic comments thrown in there. Hardheaded discussions about the CAA or any other group are welcome.
 

Cort

Phoenix Rising Founder
Just saying that DHHS has a lot of (bad) reasons to delay this study, ie not only is XMRV strongly associated with ME, but FDA & NIH have discovered several new human retroviruses in the blood supply. Thus the delay is most surely caused by venal motives rather than the vagaries of the scientific process.

Justin is always looking out for venal motives! He may be right but I hope he's wrong. We just don't know...it could have be done due embarrassment or venal but we will see.....time will tell.
 

SOC

Senior Member
Messages
7,849
Lots of people are doing and also asking questions. Asking questions is also doing.

Asking sensible questions and making constructive criticism are postive actions.

Demeaning, loaded, rhetorical questions; snarkiness; snide remarks; and destructive criticism are negative actions.

We don't need more negativity -- we have enough with this illness. We, as a group, have too little energy to waste it on pointless negativity.

All that's being asked is that people stop making rude, snarky, snide remarks and unsubstantiated accusations -- no matter who they're aimed at. When they're aimed at our allies, even when we don't agree with everything they do, is small-minded and destructive to our progress with this illness. If I was outside ME/CFS circles and was considering getting involved, that kind of attacks on people trying to help us would put me right off choosing this group to help.

Rude jokes are still rude. Jokes in bad taste are still bad taste. Been there, done that, and taken the consequences. I was grown-up enough to acknowledge the bad taste of my "joke" and delete it. So have other people. You could, too. But it's your choice.

I haven't heard anyone say that constructive criticism of the CAA is unacceptable. That is not, and never was, the point. The point is to stop destructive behavior that only damages our allies and our image and replace it with constructive behavior that forwards our cause.

CBS is a much more capable speaker than I am, so I've not been as heavily involved in this discussion as I might have been, but I'm here and backing CBS 100%.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Justin you're still mixing apples and oranges; there is a distinction between a business ie the CFIDS Association getting contract to run a program; ie the Media Campaign and the rest of the Associations business.

The contract was to run the Media campaign - but you are suggesting the contract was also to run the CFIDS Association? If so I suggest that you complain to the CDC of the fraudulent use of funds the CAA was engaging in.

If I paid you money to mow my lawn a) I wouldn't give you more money than was necessary to do that and b) I wouldn't expect you to mow half of it and then use the funds for something else but that is what you are suggesting.

History has shown that that entire proposition, that the CAA was dependent on funds from the CDC to run its operation, - which never made sense anyway, is false. The Media campaign is over, the CAA is not doing any business iwth the CDC or any other govt entities - and it has come out of the worst recession in our memory in relatively good shape despite having the media campaign money's disappear right smack in the middle of it.
I realise the contract is over. I realise that when it was going that it was only to do the media campaign and the funds were only used for that. I am assuming though, that some of the money from the CDC for the campaign was put by CAA toward its own overhead and to pay employee salaries. If this is true, then the 'don't bite the hand that feeds you' problem comes into play, ie that the danger of a bias in favor of CDC (conscious or subconscious) was created.

By the way, this statement is not true. Are you really suggesting that the brass of the CDC told Bill Reeves "Your job is to obstruct good CFS science and persecute those people with CFS". Do you really think we are that important to them - that they would organize a campaign to persecute us? And if they did why would they put the hothead Bill Reeves in charge?

I don't believe the CDC is trying to persecute CFS patients. I think they think that they're right and they think Peterson and Mikovits are wrong, wrong, wrong.....There's no need to create this governmental conspiracy theory....this is the clash between two idea systems in a very big, poorly defined field...what else would you expect at a time like this when so much is uncertain?

No, I think we were an object of ridicule to them in the beginning and they took the money that was supposed to go to us and used it for other diseases. Once the first dollar was misappropriated, and they started lying to congress about it, they had to maintain an aura of incrediblity about us so that noone would believe us when we said that they've been taking all the money and ignoring this communicable disease. They accomplished this by painting us as hysterical. This included some Reeves' superiors in the old days- Brian Mahy comes to mind- and Reeves up until the present.

I do not think that CDC head Tom Freidan is trying to persecute us. I think he just doesn't believe or want to believe that people at the CDC are and were capable of doing these evil things for so long.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
So would it be correct to assume from this that anyone that disagrees with you is unreasonable or less than fully apprised?

On the point I was making that CDC and NIH have generally acted in bad faith toward us, yes.

Do you think CDC and NIH have honestly been trying to help us over the past 25 years?
 

V99

Senior Member
Messages
1,471
Location
UK
How can we possibly know what the CDC or any other organisation is thinking. We would be naive to not entertaint the possibility that this is deliberate.

As for sarcasm and humour, they are therapeutic, and sometimes convey more than just the bare facts of the case. Which also can be of value. Patients with other diseases will use such things, but that is not why people have refrained from helping us. That would be propaganda and prejudice.