IASCFS/ME - Science and the Hold on XMRV Studies

[garcia]

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.

When did I "claim to be helpless"? Please supply a direct reference or retract your false allegation.

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.

Why don't you do this with your complaints about the CDC, instead of telling other people what to do? Go make an AIDS quilt yourself.

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)

You are preaching to the converted here

But I refuse to believe that the best that you or anyone else is capable of is sarcasm and snide destructive comments.

Again please stop making false allegations without providing references. Which "snide destructive comments" did I make on this thread?

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.

Save the patronizing comments for someone else please.

 

[akrasia]

Originally Posted by CBS
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.
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There should be a name for this sort of rhetoric which is in the spirit of "those who can do, those who can't teach." Or "bitch" in this instance. It is a very popular and stupid way of shutting down critical thought. By this logic, if you're not actually performing the activity in question, you should be silent.

Didn't like the movie you just saw, make one yourself. Don't like your representative, run for congress. This is patently absurd.

If the CAA claims to represent my interests then I am perfectly entitled to disagree.

If the CAA is "listening", it is doing it against the backdrop of decades of impervious, unreachable deafness to the real needs of this community.

The other day Wilhelmina Jenkins herself said that what has happened to people with M.E. is worse than what occurred to the patients of Tuskegee.

Finally, I can say I agree with someone closely associated with the CAA. Problem is, nothing in their advocacy ever reflected this truth. Without hand wringing or claiming a special status of victimhood, the fact remains that the deliberate, malicious neglect of people with this illness represents a crime against humanity. If some of criticisms of the CAA are accompanied by sarcasm, I think they're getting off easy.

 

[justinreilly]

If the CAA claims to represent my interests then I am perfectly entitled to disagree.

This for me is the central point. Vernon said that they had successfully 'positioned' themselves as the leading patient advocacy org in the world. If they are claiming to represent patients then we are allowed to present our opinions. They gain currency from this claim and they should follow through on it. If they represent themselves (their own interests and views) or CDC or the medical or scientific professions or some other group instead then they should make that clear.

The other day Wilhelmina Jenkins herself said that what has happened to people with M.E. is worse than what occurred to the patients of Tuskegee.

That's very interesting, do you remember where she said this? have a link?

 

[akrasia]

Justin,

http://www.forums.aboutmecfs.org/sh...Hold-as-XMRV-Frenzy-Reaches-New-Heights/page5

She wrote: "I explained that our mistrust of the medical system is similar to the way that African Americans felt after the Tuskegee Experiment."

I misremembered her exact words and obviously imposed my own interpretation. She didn't say it was worse, but she did say it was analogous. From my perspective, it is worse just by dint of numbers. What struck me the most was that she reached for an image that we all agree was an atrocity.

Sorry, if I was a bit off. My point still stands about the disconnect between the gravity of the abuse and neglect suffered by PWME and the CAA's conduct.

 

[justinreilly]

Quote Originally Posted by justinreilly View Post
I strongly believe reasonable people fully apprised of this evidence would not disagree.

So would it be correct to assume from this that anyone that disagrees with you is unreasonable or less than fully apprised?

This is a term of art in law that we use, so it may have come off wrong to people who aren't familiar with it's use in law.

To clarify, I was not trying to convey "I know all and anyone who disagrees with me is unreasonable". I was trying to say that my opinion is that CDC and NIH are fundamentally opposed to the ME science and patients, and further that I strongly believe that this is not just an outlier opinion of an extremist, it is not something that reasonable people would disagree about.

'Manufacturing doubt' is CDC and NIH's main strategy. This is done to inhibit official and public inquiry into their actions by making it appear that either: (a) we are crazy or (b) there are so many different points of view on "CFS" that noone really knows what it is, who's right or where to begin so let's not act at all until we know more.

I am saying we know that CDC and NIH are acting grossly improperly and this must change. I was trying to preemptively address the argument, that 'well that's just your opinion, there are alot of valid opinions out there including that CDC and NIH have been doing an alright job, and because there's a lot of different valid opinions out there, nothing should be done to change CDC and NIH.'