IASCFS/ME - Science and the Hold on XMRV Studies

[CBS]

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.

I'm pretty sure that many doctors currently involved in research know more than they can share. If the CAA released information they had been asked to keep confidential, it would absolutely be the last time they received any such information (and having access to information not generally in circulation provides them an opportunity to evaluate the present direction of their efforts without having to wait for a paper to be published to do so).

Lots of contradictory forces at play - And yes, that specific part is a frequent component of science as usual.

 

[Robyn]

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[garcia]

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.

 

[V99]

V99,

I wanted to say something at the time of your first comment and I didn't. I should have. I was dismayed to read your original comment as it seemed like a cheap shot at the CAA and not a serious attempt to initiate dialog or to discuss a particular concern.

Your response to Cort's genuine attempt to provide background on the issue confirmed my first impression.

There is a forum where this is tolerated. I have appreciated a large majority of your comments on PR but might I suggest that when you feel the urge to interject snark and sarcasm into a thead you post it on a different site.

As for serious inquiries and concerns about anything the CAA does, I have no issue with doing that and I feel strongly that there needs to be a room on this forum raise issues with all advocacy organizations.

However, as you said yourself, your comment was not intended to produce anything constructive.

Shane

As I said before, I am bewildered that people are taking this seriously, but clearly you are and this needs explaining. It was not an attack on the CAA, it was a joke with an attack on the CDC. OF course I don't think the CAA is working with the CDC committing fraud, who would. Therefore what else can be explained. Cort's attempt to therefore provide background information have nothing to do with this post. They can stand on their own.

I suggest that when you feel the urge to interject snark and sarcasm into a thead you post it on a different site.

Should I translate that to mean, go away I don't understand your humour? Don't make snarky comments about the CDC? Don't be sarcastic about the situation? I can only assume you would not be saying that if you had understood the joke.


As for the actual questions I raised about the CAA, no one has offered an explanation.

 

[taniaaust1]

The CAA posts a link - advertises! - a paper on the Canadian definition - and yet there's a question whether the CAA has got an issue with the Canadian Criteria (because they didn't put Canadian in there?)? Why would they post a link to a paper they have an issue with?

The CAA had an ENTIRE webinar on the definitions by LENNY JASON himself. Giving the foremost proponent of the Canadian Criteria a hour long webinar on it suggests to me that they do not have an issue with it.

http://www.cfids.org/webinar/series2010-past.asp#4

They also asked Lenny Jason to produce an article on the definition which they have on their website which I cannot find at the moment.

You can find their statement on the CCC here: http://www.cfids.org/cfidslink/2010/010607.asp#4r

***embarrassed*** at my post. Gee, i think i must of been in one heck of a irritable mood when i wrote it. im going to delete it

 

[eric_s]

Well... i'm pretty sure i have a precancerous lesion on my lip...

Ok, it's not really something to discuss here in the thread so feel free to reply by pm if you prefer, but can't you have a doctor look at it? Is it because in the USA you have to pay this out of your own pocket?

 

[CBS]

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.

You appear quite able to draft a coherent post. Justin is frequently more than able to do so. If that is the entirety of what you are capable of doing, you aren't as helpless as you claim. Write your story And if it isn't the story you're hearing from the CAA, enlist a few folks from this site (or somewhere else) to put together a web-page (or even ask Cort - I suspect that he'd be on board) and let those stories speak volumes to the CAA or anyone else that you feel doesn't get it. Think something along the lines of the AIDS quilt.

This disease is hell and it wrecks lives; those of the patients as well as our families. I feel that we're we're on the verge of the larger population being very interested in knowing just how sick we've been and asking why our health agencies have been so indifferent and callous. If XMRV holds up, the population will need to know just how bad it has been and then they'll want to make sure that the same thing won;t happen to them (at least for a while)

But I refuse to believe that the best that you or anyone else is capable of is sarcasm and snide destructive comments. We do ourselves a disservice when we go this route. We also sell our selves short when we say that we're incapable of more.

 

[CBS]

As I said before, I am bewildered that people are taking this seriously, but clearly you are and this needs explaining. It was not an attack on the CAA, it was a joke with an attack on the CDC. OF course I don't think the CAA is working with the CDC committing fraud, who would. Therefore what else can be explained. Cort's attempt to therefore provide background information have nothing to do with this post. They can stand on their own.


Should I translate that to mean, go away I don't understand your humour? Don't make snarky comments about the CDC? Don't be sarcastic about the situation? I can only assume you would not be saying that if you had understood the joke.


As for the actual questions I raised about the CAA, no one has offered an explanation.

Well, I guess I'm just a little slow. Or maybe I'm not stupid enough to believe your defense. I understand your humor. It's a lot like making a joke about people with CFS hanging out with whiny BMW driving housewives who just need some attention and then claiming that the joke had nothing to do with CFS. You were bashing on housewives who drive BMW's and that anyone who thought you were talking about CFS patients was just to stupid to get the joke. Why include the reference to CSF (or the CAA) if it wasn't intended as a message about CFS (or CAA)?

I suggest you admit to your original intent (or apologize), keep posting here except when you feel the need for this type of "humor" (the kind that is at the expense of someone you later claim is just overly sensitive and not bright enough to realize you meant no harm) and when you feel the urge, you can post your not so thinly veiled attacks on a different web-site.

 

[dannybex]

I took it seriously too...

As I said before, I am bewildered that people are taking this seriously, but clearly you are and this needs explaining. It was not an attack on the CAA, it was a joke with an attack on the CDC. OF course I don't think the CAA is working with the CDC committing fraud, who would.

As for the actual questions I raised about the CAA, no one has offered an explanation.

Well, like CBS, I thought the same thing, especially when your "joke" was followed by the endless questions about the CAA, all with the implication that they're not doing enough, or not doing things fast enough, that such and such should be on this part of their website, rather than that part, etc..

V99 -- if you're able to -- if you have the 'energy' -- they might appreciate your volunteering to help them address these issues and make the changes that you feel need to be made.

Would you be interested in volunteering to help the CAA?

 

[V99]

Why include the reference to CSF (or the CAA) if it wasn't intended as a message about CFS (or CAA)?

because it was a follow up to another joke. Get it, a joke.

I suggest you try to manipulate someone else. If I want to say something abut the CAA I will, and I have. Why would I need to be sneaky? What should I be afraid of? Why would I not come out and say it? You make no sense what so ever. I can only assume you do not like the actual questions I have asked. It has nothing to do with intelligence, and seems to be more about people being on edge right now. I will not apologise for a joke, that would be ridiculous. Stop wasting my time.

 

[V99]

Would you be interested in volunteering to help the CAA?

I would not be able to, as I have other commitments with other organisations.

 

[V99]

Well, like CBS, I thought the same thing, especially when your "joke" was followed by the endless questions about the CAA

Yes, I used the opportunity to ask questions about the CAA. They were not related to the joke.

 

[Martlet]

yeah, my family gets those a lot, i'm on the lookout for it... my grandfather and uncle both got skin cancer, and my sister has had some suspicious things removed... i'm gonna have to get it looked at, but in the meantime i can't help but poke at it....

That lesion needs to be looked at by a dermatologist. Poking at it won't help, neither will putting stuff on it if it is a potentially cancerous lesion. http://www.mayoclinic.com/health/skin-cancer/DS00190 If it's something important, it can be removed, if it is nothing of any consequence, you - and everyone else here - can feel relieved. My husband had a lentigo melanoma removed from his cheeck in '89 and since then we have been very vigilant. Not worth messing around with.

 

[Martlet]

Moderator: Please tone it down. Accusing someone of being manipulative is offensive and, as such, is against forum rules.

 

[V99]

Accusing someone of being manipulative is offensive and, as such, is against forum rules.

Martlet, so is accusing someone of making veiled attacks. Please could you apply the same rules to CBS.

I suggest you admit to your original intent (or apologize), keep posting here except when you feel the need for this type of "humor" (the kind that is at the expense of someone you later claim is just overly sensitive and not bright enough to realize you meant no harm) and when you feel the urge, you can post your not so thinly veiled attacks on a different web-site.

 

[Cort]

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....

 

[Cort]

As I said before, I am bewildered that people are taking this seriously, but clearly you are and this needs explaining. It was not an attack on the CAA, it was a joke with an attack on the CDC. OF course I don't think the CAA is working with the CDC committing fraud, who would. Therefore what else can be explained. Cort's attempt to therefore provide background information have nothing to do with this post. They can stand on their own.
.

Apparently I and others misread the intent of your post. My apologies altho I must say it was easy to do. I think we got it now and can move on.

 

[justinreilly]

Right.... but why is that why he is holding it longer?

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.

 

[V99]

Apparently I and others misread the intent of your post. My apologies altho I must say it was easy to do. I think we got it now and can move on.

Thanks Cort. I really do accept that it could be misread. I really was not attacking the CAA though. I'm in my own little word right now, I admit it, drugs can be a bad thing. It honestly was a joke about the CDC and their magical, none-detectable test. I did then ask loads of questions about the CAA, so again I can understand people thinking there was a connection. Usually I hate it when others are made to explain a joke, I think it detracts from real issues, but on this occasion I will say I am sorry. I apologise for not making it clear.

As for all the questions I asked about the CAA, they were all reasonable, and would be no different to the questions I would ask organisations like AFME, MEA, etc. ME has never been under such scrutiny, from the scientific world or the media, and there are lots of rumours and misinformation being put out there. We need to question everything that comes are way. It doesn't matter where it comes from. In the last couple of week I have seen mention that the NIH study is now back with PNAS, I have also seen mentioned that further tests are still being conducted, both from reliable sources. Questions are a good thing, then can help to clarify matters. I'm sure you know what I mean.

 

[bakercape]

Is there some

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?