IASCFS/ME - Science and the Hold on XMRV Studies

V99

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As for the post I made earlier. Well, that's how you read it. It is not what I meant.
Are they helping the CDC perfect that test that finds XMRV in fake samples?
 

V99

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Can you use the end of a vacuum cleaner? Obviously, one with a nozzle that is smaller then the eggs.
 

V99

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The notice on the FB page that the IACFS statement was posted to the XMRV info page is in the comments on the post about today's update.
Are the CFIDS Association not allowed to post this statement in its own section? and it's called IACFS/ME
 

leaves

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yikes... Brrrrrr
Then to think I am already freaked out by this little mouse that is unwilling to move out despite all my efforts.
 

V99

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Then to think I am already freaked out by this little mouse that is unwilling to move out despite all my efforts.
Hey, I know someone with a snake that could scare that mouse away.
 

V99

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The links under 'Additional Information' are not all listed by date of posting. Otherwise the IACFS/ME statement would appear below the advert for the webinar and the Future medicine article, and the 'Science study', would be much further back. Anyway, a link is not good enough, when the statement comes from the IACFS/ME.
My apologies, it is in date order. However, it is poorly formatted, and still needs its own section on the XMRV page and Facebook page. Again, I will ask, is the CFIDS Association not allowed to post this statement in its own section?

It is also the IACFS/ME.
 

jspotila

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No personal offense meant. I should have been more precise and less cavalier. Please accept my apology's and if you would like I'll delete the post.
Apology accepted, and no lasting harm. It's up to you and the moderators whether the post should be deleted. I appreciate your kindness, George.

  • I expect that a premier patient advocacy organization not engage in rumor's such as 'sources indicate that the paper will be released in a few weeks'.
  • I expect a premier patient advocacy organization like the CFIDS organization to present factual information if they have it and to keep quiet if they don't.
  • I expect a premier patient advocacy organization like the CAA to make strong statements against government interference in science that directly affects the health and well being of the patients they are representing.
  • I expect a premier patient advocacy organization like the CAA to make a strong stand and to organized patient based campaigns in letter writing and protesting any action that directly affect the health and well being of the patients they are representing in a negative manner.
You raise good points, George, which I would like to address. But I also don't want to threadjack. I will say that the Association does not engage in rumors. When the Association makes a statement, it is based on factual information received. Sometimes, a source does not want their name associated with a statement. The Association balances between giving as much information to the community as possible while respecting confidentiality when appropriate. The Association takes strong stances on many issues, and chooses the tactics most appropriate to a situation. Letter writing campaigns are not always the right tactic.

Every organization that is working on behalf of CFS patients should be held to a very high standard. The Association strives to meet that standard, and I hope we can rise in your opinion.
 

George

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Hey guys
Sorry for hijacking a really good thread with the snake eggs question.

JSpotilia - I do give major kudos to the CAA for all of their efforts. Of all the Patient Advocate Organizations the CAA impresses me as working the hardest to do the right thing. It's on me that I only give the CAA a 6 out of 10. If I wasn't so dang sick I'd pitch in and show the CAA how it's done. (big grins) Thanks for your graciousness.

On the snake and eggs. Yep snake came in a coupla days ago and laid about a dozen eggs. Good snake too a king snake that eats other snakes and mice and bugs. So I consulted my ex, lured snake out by shining a flash light on her. Then wrapped the eggs in old birds nest parts and a light clean cloth so that they could be move without being exposed to sunlight. Stuck them under the shed they should be o.k. there. So snake problem solved. But really I could probably find the momma and send him your way leaves. (grins)

Love the Yesssssssssssssssssssssssssssss V that was a good one. (snicker grins)
 

V99

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Shall I ask in a different way.

Jspotilla, why can the CAA not post the statement from the IACFS/ME on their Facebook page under 'The CFIDS Association of America' tab? Are they not allowed to?

Also why do the CAA not make it clear that they are referring to the Canadian criteria in this section of their Facebook page?
For those interested in the evolution of various definitions used for CFS/ME, a new article by Dr. Leonard Jason's group from the America Journal of Biochemistry and Biotechnology. http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf
It is crucial for an advocacy organisation to provide clear up to date information. By not putting the statement from the IACFS/ME on your main Facebook tab, you are communicating that the IACFS/ME is of no great importance.
 

muffin

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I liked the snake egg posts. Where is the Momma Snake then? Maybe those eggs are no good given that the Momma snake has not been on them to keep them warm. Though I know about as much on snakes as I do about virology. I do know $h1t about $h1t though - 4 dogs and 5 cats says I am expert on that!

I hate saying this: WE must be the ones to push. Were it not for the Whittemore's and their sick child, we would be stuck back in previous decades, regardless of what these Advocacy orgs do or have done for us. Sad but so. I'm sure these orgs mean well, but, what really has been done in the last decade for us? Funding for real research from the Hill? Taking the CDC/CFS program/Reeves down? Really, I think that WE took Reeves down with the constant screaming about him and the CDC/Frieden may well have known we were right. I will give credit to the CAA for taking a really good shot across the bow at a conference when they went after the CDC/CFS people for wasting money. Now that was GOOD. But again, WE, the sick, must be the ones to do our thing. We must fight, it's just that simple - I think anyway.

What earmarked charity money you have should go to WPI and PR. Sorry CAA, but it is the WPI, the Whittemores and Mikovits, et al that have done us the most good in the least amount of time. So that's where my very limited "charity" funds have to go. Kills me to use that money for research, a government job paid for by my taxes, when I would rather spend that money on helping dogs/cats and getting them "fixed", stopping abuse, and finding them true loving homes, etc.
 

George

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Hey Muffin
Snakes don't have to sit eggs. They lay em and slither off. (grins) But it's important that the eggs stay covered and not in direct sun light. I . . . ehem. . . checked one of the eggs to see if it was . . .um. . .viable. It was. So I put them under the shed where they will be safe and hopefully hatch and have good snakey lives.

Yeah, the bad thing about any Patient Advocacy Organization is that there can be a type of think that "the patients are too ill, we know what's best for them". I think in some respects that this has happened with the CAA. My impression, and it's only my impression, is that the folks who are in charge are more likely to listen to the government agency's in a effort to keep on the side that the bread is most buttered. Do I see genuine concern on the part of the CAA for their patient population, to a smaller degree, yes.

There is a balance that has to be struck within any organization like this between the patients and the government agencies that are most likely to fund the work that will help them. Right now I find the CAA's policies to be more heavily skewed towards government policy's than to patient concerns. Hence the lower star rating. (grins) I also, resent this attitude. While I am grateful to much of what the CAA has accomplished I believe that the group is at a difficult turning point. The face of ME/CFS advocacy is changing rapidly just as AIDES advocacy began to change in the 1990's. It's up to the CAA to make the necessary changes to their advocacy style in the face of those changes. Part of that change is to listen to the patients and make sure the patients are being cared for in an open and transparent manner.

There has been nothing open, honest or transparent about the Alter Paper suppression.
 
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Yeah, the bad thing about any Patient Advocacy Organization is that there can be a type of think that "the patients are too ill, we know what's best for them". I think in some respects that this has happened with the CAA. My impression, and it's only my impression, is that the folks who are in charge are more likely to listen to the government agency's in a effort to keep on the side that the bread is most buttered. Do I see genuine concern on the part of the CAA for their patient population, to a smaller degree, yes.

There is a balance that has to be struck within any organization like this between the patients and the government agencies that are most likely to fund the work that will help them. Right now I find the CAA's policies to be more heavily skewed towards government policy's than to patient concerns. Hence the lower star rating. (grins) I also, resent this attitude. While I am grateful to much of what the CAA has accomplished I believe that the group is at a difficult turning point. The face of ME/CFS advocacy is changing rapidly just as AIDES advocacy began to change in the 1990's. It's up to the CAA to make the necessary changes to their advocacy style in the face of those changes. Part of that change is to listen to the patients and make sure the patients are being cared for in an open and transparent manner.
This is so well put George. Thank you. I believe you speak for thousands of us - not just yourself. Well - for me anyways.

There has been nothing open, honest or transparent about the Alter Paper suppression.
To further the point that the CAA should have a strong position on the withholding of the NIH/FDA paper and should publish both their position and the IACFSME position paper on their Facebook page themselves (and not only through having 2 responses to a post in the comments section - you have to click "Others" to see it).

This morning a post was made (at about 11 am) to the CAAs facebook page:

The IACFSME weighs in on the hold on the NIH/FDA paper. Has the CAA made a formal position statement? http://www.iacfsme.org/
2 hrs later The CFIDS Association of America posted (about 1 pm)
From our XMRV resources page (http://www.cfids.org/xmrv/default.asp):

"Publication of several more studies XMRV in samples from CFS patients is anticipated, with papers pending from groups at the National Institutes of Health/Food and Drug ...Administration (NIH/FDA), Tufts University (presented at Invest in ME conference in London), Institut de recherches cliniques de Montral (presented at the Cold Spring Harbor Laboratorys Conference on Retroviruses) and other institutions. Journals employ different review processes and the length of time from submitting a manuscript to publication can vary greatly. Journals also have different rules about pre-publication release of data into the media; unofficial reports sometimes jeopardize papers in press. Data will have much more impact if it gets into high-impact journals, so we urge patience until published reports are officially released. The study pending from NIH/FDA attracted a lot of attention in June after news of its conclusions was leaked by a Netherlands news agency. The researchers have conducted additional experiments as requested by the reviewers and the paper is expected to be published later this summer in the Proceedings of the National Academy of Sciences."
And an hour after that: (about 2 pm)
Jennifer Spotila In addition, the Association stated in the July 2 CFIDS Link that "we are actively advocating for publication of the study conducted by NIH/FDA as swiftly as possible."
And 3 hours after that (about 5 pm)

Thank you for the replies. I would appreciate is all these posts were moved to the main CAA facebook page, which only you can do.

"we are actively advocating for publication of the study conducted by NIH/FDA as swiftly as possible"

I'm sorry.... I must have missed this. Can you direct me to where I can find what this advocacy consists of?


The Lombardi paper was reported to be under review for five months at Science, and its important to recognize that top journals enforce tight requirements on their authors. The stronger the evidence is when it is published, the closer we will move to having scientific consensus on this critically important issue.
This totally ignores the fact that the reason for the delay is not the normal peer-review process, but that the CDC asked HHS to pull the NIH/FDA paper.

>The CDC (couldn't find XMRV + instead of saying that, said that XMRV was not correlated with CFS - a huge logical jump from what they tested and their results)

>NIH/FDA (did find XMRV, and correlation with CFS and I think in the healthy public at more or less the rates in the Science paper by Mikovits et al)

>HHS (the boss of both)

According to Mindy Kitei, ( http://www.cfscentral.com/2010/07/fdanih-paper-in-limbo-patients-unite.html ) the NIH/FDA paper was in galley proofs (final stage of publication) when HHS pulled it, an action the PNAS publisher had never seen happen to a paper once accepted in his 4 years as editor (the only paper ever pulled after acceptance was pulled by the editor himself, and later published).


ps - congrats on having good snakes George
pps - did you have that egg scrambled?
 

valentinelynx

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Hey, cool about the snake. I have a kingsnake friend, too. She came in last October to the kitchen and hid, yes, under the refrigerator. Oh well, I thought, I won't see her again. Well, later that night.... (snake squeamish might not enjoy this...) I was taking a bath, thought about the snake, looked up and THERE SHE WAS, gently gliding into the bathroom. The bathroom was about 50 yards from the kitchen! So, I figured she wanted to stay awhile, caught her and put her up in a nice snake apartment. She was very young, not much more than newborn, I think. She's doing great! Much better pet than the baby rattlesnake we caught just outside the kitchen door a few weeks before Ms Kingsnake showed up. Or the 5 foot Big Mama rattlesnake who visited the yard earlier that summer. Boy, did she rattle loud! Enjoy!
 

free at last

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Everything you have said here v99 is so completely 100% correct that im amazed more scientists are not coming out and saying what gives with this behaviour, Its so obviously biased towards withholding positive information and releasing negative information that cover up really doesnt seem such a silly idea anymore. Untill a positive release of the NIH paper actually transpires we have nothing 0, I know some have turned my arguments on there head, when i suggest they would not be behaving like this, if they knew a positive paper was just around the corner for release, that for all the world it really looks like when the NIH paper is released the extra experiments perfomed ( yes asked for by the publishes, worringly irrelavent ) will show a about turn from the already leaked information, is it really a coincedence that 1 the paper was put on hold, 2 the CDC release there negative findings, and 3 extra experiments are asked for ( i dont care it was the publishes who asked for this, they could have been advised by the CDC, Extra experiments that could now show a problem with the earlier findings. I think were in for a shock folks, i think its a coverup, i think the NIH paper will somehow do a u turn, And i think everything that v99 has said here really kind of proves it. I just hope im wrong. But if im not There is going to a be a lot of angry ME CFS sufferes posting on the net in a few weeks. And you know what i bet if this really happens ( NIH u turn ) They will all just plain get away with it, they are the elephants, we are the mouses yeah probably with XMRV
 

JT1024

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RE: On a personal note: I am more than happy to answer questions and consider constructive criticism of the Association's work. But I really would appreciate common courtesy instead of comments like "ROFLMAO, Working with the gov'ment? " or "Are they helping the CDC perfect that test that finds XMRV in fake samples?"


I'm not on here often but it is pretty apparent.... Courtesy is extended when interests are not in conflict.

George... you are more than informed IMHO... keep pursuing the truth.