Suzanne Vernon: "Agency heads are scared to death...if XMRV works out"

[gracenote]

Thank you, CBS. That was nothing less than courageous.

What we need are whistle-blowers from these agencies that might be "scared to death" including from inside the CAA.

 

[Emmanuelle]

The longer a lie has been going on, the more invested the "lie keepers" become in covering up their deception ...

 

[Emmanuelle]

CBS-- I really honor you for respecting Dr. Vernon's wish that you not repeat what she said to you (for 6 months!) and I respect the reasons you decided to share the information. She put you, perhaps unknowingly, in a very difficult position. Thanks.

 

[LaurelW]

I don't know why anybody is surprised by what Suzanne said. The way the agencies have been acting since the Science paper came out, I think it's pretty obvious that they are running scared and doing whatever they can to maintain the status quo, probably for a variety of reasons: fear of having the country be financially overwhelmed by all those sick patients, fear of being proven wrong and getting egg on their faces or losing their jobs. Or just plain discomfort of being outside the existing paradigm of what they've always believed. It takes a big person to admit they are wrong, and apparently most of them are not big enough.

I've said it before, and I'll say it again. The most admirable people in this world are the ones who are open to changing their ideas and long-held positions when new evidence proves otherwise. Unfortunately, this is a pretty rare trait. Dr. Vincent Racaniello comes to mind as a recent example.

 

[Otis]

Thank you, CBS. That was nothing less than courageous.

What we need are whistle-blowers from these agencies that might be "scared to death" including from inside the CAA.

They swallowed the whistle at the CAA, I'm afraid. Retro eek:

Sooner or later someone has got to be "deep throat".

 

[SilverbladeTE]

Sigh, am not surprised but thanks it was important to air this
these idiots have let another HIV scandal occur, pathetic scumbags. Meh :/


Perosnally I believe in *just retribution*, as I have said before, and please note that and how I explain it before any foolish people take things the wrong way *ahem!*

If a person truly is repentant and apologizes, that's the best thing, however damages may still need ot be made up for, and if serious enough, some measure of public restitution, of "balancing" as a poster notes, made so justice is seen to be done.

Now, if a single perosn does a single wrong without malice a forethought, the law always classifies that much lighter, and quite rightly, heat of the moment any of us can do wrong or bad things, we are but mortal. Long as it isnt' repeated, is out of character or due to provocation then little or no punishment can be appropriate (and if provocation is high then it becomes something else entirely and the other party is to blame)

It's when things are done cold bloodedly, with malice and profit a forethought that it becomes a whole different kettle of fish, and when it starts to affect many innocent people, then, the guilty person has to be excoriated. Justice has ot be seen to be done, otherwise similar wrong doings will continue as evil doers know they will not face censure which cannot be allowed.

and for it to be just, it has ot be in a *court of law, in front of a jury of your peers*, not a kangaroo court or a mob.

 

[Sean]

We all of us feel that deep sense of grievance, but if all we care about is revenge, maybe we don't deserve to be liberated, and maybe we won't be until we learn to let go of our anger and hatred.

Like JayS said, there is an important (though sometimes subtle) distinction between blind revenge, and tough but legitimate accountability.

There must be accountability. It has to be done properly, and fairly, but it has to be done.

 

[George]

An Important point

Shane
I'm glad you brought this up for discussion.(you da man) I noted on the poll we had the other day that we (the patient population) keep thinking we have some kind of ownership in the CAA and that we can somehow wrangle them on to the path that is best for us. I think that an important point needs to be considered. The CAA is a lost cause for fulfilling the needs of the patients. Trying to wrangle them into listening to patient needs is like herding cats in a bath tub. It can't be done.

In any entrenched group it's a 50/50 shot at best that they will choose to move in a new direction when new information comes to light. Heck the CAA and many others are still trying to divide us up in sub-groups; that's like so 90's man. (grins) plus it's a very nice divide and conquer technique. The CAA has had 16 months to get on board with the patient population. God knows we've let 'em know what we want from them. They have tossed some crumbs our way but they have ignored the overall will of the patient population.

At some point we have to wake up, smell the coffee and make choices. The only vote we have in the CAA is donations, other wise it is an independent entity that will survive without us and will do what it wants to do regardless of patient input. So for me I stopped beating my head against the wall round 'bout last June or July.

Personally I find the "agency heads" to be incredibly arrogant in regards to the patients. I've never done well with a pat on the head. ( I much prefer a good belly rub or even better a hinie scratch! Big grins) so I've picked up my bone and gone to play in other fields. There is nothing I can do to to help these people "get it" cause they just don't want to. So me I'm with Mark, why are we even talking about em??? just show em your hinie. (grins)

Let's get on with building and financing groups that can and will help us. If the WPI doesn't have an advocacy arm maybe it's time for us to help them build one????

 

[CBS]

Hey George,

I guess the primary reason I care is that there are people doing great research where the CAA is their primary source of funding (that and they seem to think they speak for ME patients when it's clear that they don't). I'm working with Otis on something that might help with funding for all researchers that by passes the CAA.

 

[Mya Symons]

I am glad you told us CBS. I think that was Brave. I went to see Ms. Vernon talk. I did not post the notes however. One, because I became ill (sicker then usual and ended up getting surgery with a post operative infection) and 2) because it seemed like she spent no more than 2 minutes addressing XMRV in her lecture. If there weren't people there asking questions about it later, I don't think she would have said anymore. I took the notes on the lecture, but was so dissappointed I just could not get the energy to post the other information. I feel a little guilty, however; I think by now the information has been posted here since people here are really up on everything CFS.

 

[eric_s]

Let's get on with building and financing groups that can and will help us.

This is exactly my point of view also. We need groups that do that and ideally they should also coordinate and collaborate. We need to work on this.
I have always liked to CAA, but if PWC don't feel the CAA is their best bet they have to move somewhere else or even create something else. If this forces the CAA to improve, even better.

 

[omerbasket]

Isn't it just a true statement?

Anyone with any knowledge of how CFS has been treated would know that if XMRV works out, the most angry, militant and belittled patients will have been shown to be right. That's not going to reflect well on those in positions of authority. I don't see commenting on that as reflecting poorly upon Vernon.

(PS: I've only been aware of Vernon since the XMRV stuff. I know others dislike the fact that she had worked for the CDC, asnd I've got no real knowledge of any of that).

I have to say, Esther, your comment is very much expected. Much like it's expected that Cort will forget Vernon's words (possible that he really did forget it - but what does it say about his care for the patients when he forgets such an awful statement?).

 

[markmc20001]

Maybe the CAA was just part of the CDC/Reeves/Wessely psych-ops campaign all along.

 

[muffin]

I am trying so hard NOT to be a Hypocrite

I'm the big mouth that keeps saying we all can not attack any ME/CFS groups or advocates and that we must remain united and not have this insane infighting since the government wins (divide and conquer and we do their work on us by us).

Well, I was not thrilled when I saw Vernon put in at CAA. I couldn't really figure it out. Why did she leave CDC (and probably a secure Federal government career position, I assume - but that may not be true) to go to an advocacy group? If she had strong convictions about ME/CFS and that we are indeed physically sick and not mentally ill (Reeves psychobabble) then it may well have been better for us and her convictions to stay at the CDC and fight from within.

I admit, I have not cared for what has come out of her mouth and what has NOT come out of her mouth when she should have been quite forceful on our behalf. Can't figure that out either.

So, sitting here and trying not to be a hypcrite (and prob. failing) by making not nice comments about Vernon, about the best I can say is that if you do not like what CAA is doing then email them. I have. Tell them what you think is wrong and how it should be fixed. If you are past fed up, don't donate and tell them why. Join and support other advocacy groups so that your voice is heard. A single lone voice is not heard but a huge worldwide collective voice is indeed heard loud and clear.

Remember, just because CAA touted itself as THE CFIDS advocacy group speaking and working on behalf of us doesn't MEAN that they are or will or even have any right to do so. They can say they are the major spokesgroup for us sick, but that doesn't make it so.

There really are so many more ME/CFS advocacy groups out there now that you can pick and choose who you want to support and what areas you want to play in. If you want your donations to go to straight research on the Retrovirus and its impact on ME/CFS then donate to WPI (I do) and be a part of the groups doing just that. If you want to be part of a large group that concentrates on hitting the Media (in all of its shapes and forms), then donate and/or provide ideas to MCWPA. PANDORA is another wonderful advocacy group headed by Marly Silverman and this group is really knocking themselves out in so many areas - see their website and be surprised what all they are into. Also know that the organizations I mentioned are not getting the big salaries (salaries? I donate to MCWPA and support them, ditto the other members) - and the donations to these groups are not eaten up in overhead as other non-profits are beaten up for doing.

Bottom line: voice your concerns to the CAA and if you have had enough, then ignore them. Do be a part of other advocacy groups so that you are part of a larger and more powerful group.

I am not a group joiner type of person. I don't do cliques and stay far away from any group. But I did realize that my lone voice was just not going to be heard and that I did need to be part of an advocacy group that did do a major job in promoting our cause and informing and educating the public on ME/CFS and now, the deadly Retrovirus. I picked MCWPA because I already knew the people working behind it (Tina Tidmore for starters - read on PR what she writes and how astute she is) and felt quite comfortable that this group of people were decent, well meaning, super smart, effective and that there would not be the fights and egos involved. I was right. We all are indeed friends and support each other as friends. When one person goes down (sick or family issues, etc) then others move in to pick up that person's "job" until they are able to return and jump back in again. We are indeed loyal and supportive of eachother which is quite nice. There are no egos, no one trying to outpower the rest of the team - just a group of ME/CFS sick people trying really hard to do what they (and the members!) believe needs to be done to get us funding, clinical trials, recognition/acceptance/support by the governments (worldwide) and the public.

Sorry, that was not meant to be an MCWPA marketing spin. Once I start on a topic I go off rambling and on tangents and eventually make my way back to what I really mean to say (sometimes and sometimes I stay lost in the forest). Email CAA with your complaints/concerns/suggestions and look elsewhere for other groups (plural) to be a part of. CAA declared itself to be our spokesgroup. WE all did not vote on them to do that role. So, just ignore, quite wasting your time and energy on beating up on CAA and go elsewhere.

Finally, I am not convinced that we do need ONE major advocacy group out there speaking for us all. I have a voice and I certainly can speak for me. I can also use my voice and ideas and work alone and with other groups to get the messages out that I want out. Doing my own thing AND being part of a group whose goals, missions, values I agree with (MCWPA) works for me. I also support other advocacy orgs too when they are doing things that I like and think need to be done. CAA doesn't meet my advocacy needs, but other groups do. Plus CAA has gone off on the research side of the house and not the advocacy side. So expecting them to be the strong voice for us probably isn't fair to them. Vernon probably should just keep her mouth closed and do or support real research.

Hopefully my rambling didn't cause me to be the full blown Hypocrite I swore I would not be.

 

[CBS]

I have to say, Esther, your comment is very much expected. Much like it's expected that Cort will forget Vernon's words (possible that he really did forget it - but what does it say about his care for the patients when he forgets such an awful statement?).

Omerbasket,

I need to make one thing absolutely clear. My inclusion of the details regarding Cort were in no way intended to cast judgment upon or question Cort's actions or intent. Cort was there. I remembered the statement, he didn't. I am sure he feels quite comfortable in his response to me. I don't make anything more of Cort's response than that. I consider Cort a good friend. His view of the CAA and mine have probably drifted apart. That doesn't matter to me. Cort has done as much or more to help the ME/CFS community than anyone I can think of. I have a great deal of respect for Cort. This was not in any way about him.

CBS-- I really honor you for respecting Dr. Vernon's wish that you not repeat what she said to you (for 6 months!) and I respect the reasons you decided to share the information. She put you, perhaps unknowingly, in a very difficult position. Thanks.

Emmanuelle, Thanks for your commenting on the difficulty of the situation I was put in. From the day Dr. Vernon made that statement I was torn by what felt like having to choose between being loyal to the ME/CFS community and not doing damage to some larger purpose (Agency heads as well as the CAA had better feel uncomfortable, they'd have to be extremely callus in their indifference to all of the patient suffering to do otherwise). That's why I tried to get clarification from on Dr. Vernon's statement from Jennie and also why I wanted to talk to Cort.


Muffin,

I agree. My real angst around the CAA is that I know and have a great deal of respect for some of the researchers who count on them for funding. Understandably, there is a massive gulf in how the CAA is viewed by the researchers who count on seed money from the CAA and the patient community that feels unrepresented by the CAA. Efforts are underway to create a mechanism to channel provide support to these researchers for patients who are uncomfortable with giving to the CAA.

 

[justinreilly]

...However, the point remains that patients should not have been asked not to send in comments.

I don't think this was the worst thing they've ever done, and my memory on this isn't great, but i get the feeling that i've heard just as many messages not to 'bother' the powers that be as i have that we should email them. a more proactive stance is beyond necessary in ME politics, obviously.

 

[alex3619]

Now is not the time to be breaking up or directly opposing existing organizations. If we need new ones, lets make them. We are at a potentially crucial time, with a real chance for change. This does not mean you can't oppose specific advocacy claims or spin in the public, but that would be attacking the arguments, not the organization. We need everyone in advocacy now. We should be more concerned in reaching out to the majority of ME/CFS patients, and allied diseases, who are not participating in advocacy. Some of them may not be too ill to help. Bye, Alex

 

[Michelle]

Yes, I agree with you Alex. I think having BOTH the WPI and CAA working on research is great. Starting a premiere advocacy and PR organization to help them and the greater patient community would also be great.

 

[ixchelkali]

Then why the need for secrecy?

I don't understand the need for secrecy, either. I mean, it's kind of something we all knew. But what I really don't understand is why, if Suzanne Vernon didn't want it repeated to the patient community, did she say it to you & Cort? Wasn't that an, um, odd thing to do? Unless you were supposed to repeat it, but attibute it to an anonymous inside source, or something.

 

[ixchelkali]

CBS-- I really honor you for respecting Dr. Vernon's wish that you not repeat what she said to you (for 6 months!) and I respect the reasons you decided to share the information. She put you, perhaps unknowingly, in a very difficult position. Thanks.

That's what strikes me about it, too. Saying this to members of the patient community and then asking them not to repeat it puts them in an untenable position. It isn't a fair thing to do. If you don't want it repeated then don't say it (but I know that's more an ethical than a political point of view).