You may wonder why the CAA treats XMRV the way they do... So:

[CBS]

No Cort, it is a personal attack and accusation, if you do not remove it you are forcing my hand.

I thought you were in favor of just blowing off a little steam here and there? Or does that only go one way?

 

[V99]

Cort, I appreciate you adding that statement. However, I would much prefer it if it was deleted.

You have to understand, there are powerful people out there right now who are attempting to completely destroy any and every last bit of research into this disease. If they kill of XMRV research before it gets going we can all forget about regaining our lives. Everything does revolve around the WPI's research right now. I do not, in any way, want to be made to help them. If you don't delete it then you should also state that I in no way said any of those things, and it was you who made the claim, albeit for a joke. Right now, in that post, there is nothing that shows I never said that, only that I do not feel that way. It needs to be made clear.

It may seem like I am going over the top here, but I don't want anyone to just read that post and think I must have put something that would have given you that impression.

Thank you

 

[V99]

I thought you were in favor of just blowing off a little steam here and there? Or does that only go one way?

Personal accusations and attacks are never acceptable.

 

[leaves]

Aiaiai this is pretty intense for a Sunday evening.
good night
And PEACE
Or somethin'...

 

[CBS]

Personal accusations and attacks are never acceptable.

Care to repeat that to Dr. Vernon? Or does she not count? I can guarantee you that to Cort (and myself), Dr. Vernon is a every bit, if not a lot more, real (and a lot more constructive and human) than someone with an account and screen name.

 

[V99]

Vernon is a CFS scientist and we must be free to assess and critique her work. After all she is meant to be working on our behalf. Whether you feel personally close to her is immaterial to her job.

 

[CBS]

Vernon is a CFS scientist and we must be free to assess and critique her work. After all she is meant to be working on our behalf. Whether you feel personally close to her is immaterial to her job.

You purport to be closer to her than anyone has as there are several posts in this thread alone where you have claimed to know what she's thinking. That goes beyond critique. And yes, public statements by anyone who has assumed a position of representation ought to be critiqued.

As a former researcher, I often find myself wondering what people with CFS hope to accomplish by attacking our allies. Before I became ill with ME, I was aware of the emotional mess that was CFS and the associated research. None of my colleagues wanted anything to do with research in the area. Researchers continue working in this field in spite of many of the most vocal patients.

 

[parvofighter]

Just do it

Cort,

With all due respect - and I haven't followed this thread, so I have not followed the nuances of this conversation - I just don't get why you don't remove an offensive line, if a member has repeatedly expressed concern that this is misrepresenting her views.

Just DO it!

 

[Cort]

If you don't delete it then you should also state that I in no way said any of those things, and it was you who made the claim, albeit for a joke. Right now, in that post, there is nothing that shows I never said that, only that I do not feel that way.

I thought I did do that and I never made the claim - this is getting all mixed up - that WPI did quick and dirty studies, anyway.

I added "It was a joke"at the end to make sure that everyone realizes that.

(Since this statement really ruffled some feathers let me clearly point out that yes, while it was a bit a stab at V99 from me - it was done tongue in cheek (hence the smiley) and was never meant to imply that she actually felt the WPI did quick and dirty studies. It was a joke.)

That's about it from me. Hopefully we can all move on.

 

[urbantravels]

I'm new here, so probably have no right to say anything, but I feel that whatever energy we have is far too precious to waste on this kind of bickering amongst ourselves.

I know how it is when you feel you just *must* have the last word but trust me, that rabbit hole goes down forever. Turn the page: start some other, more productive discussion.

 

[gracenote]

Researchers continue working in this field in spite of many of the most vocal patients.

Whoa, CBS.

I hope you're not suggesting that we need to behave ourselves in order to be worthy of research and treatment. That would be kind of . . . discriminatory? I'm tired of having it insinuated that we the patients are the reason we don't get appropriate care. Maybe it's our personalities: We're too introverted! We're too driven! We're malingerers who're just wanting a free ride! We speak up too much! We get mad that all these political games are being played at our expense! We complain! We write impassioned letters! We're giving THEM a reason not to help US! It's OUR fault they think we're CRAZY!

Not saying that that's what you were trying to say but . . .

 

[Cort]

I must say that is a hilarious picture! :tear::tear::tear:

At the same time I think there is a fine line that we have to at least think about. I know advocacy groups are always wondering how far they should go...when they should step back, when they should step forward...basically what is the most skillful way to proceed.

An unskillful way to proceed, in my opinion, was demonstrated by the person (or persons) who wrote Dr. McClure enough hate mail that she started talking about how, I don't know, crazy we were in an interviewl, and that she would never work with CFS again. (Yes, I know, maybe that's a good thing! but still the word spread that there are all better diseases to spend your time.

I do think it is something to think about. We have a reputation as a quite informed group but also a pretty nasty group at times. I was talking with someone working right smack in the middle of the AIDS epidemic and he said CFS now reminded him very much of AIDS then; there were all sorts of little factions and groups arguing heatedly with each other - instead of working together.

I would argue that we'll never get done what we want to get done unless we stop blaming this group or lthat group and focus on what we need to get done. Everybody wants to solve CFS! There is a difference of opinion on how to do that - but our core goals are the same.

 

[judderwocky]

Cort,

You say that if there were other restroviruses associated with CFS we would know....

but my point is that some of these are new retroviruses.... and many of the one's we supposedly have already sutdied... across many disease spectrums.... are now being found to have strains and variants that can move from species to species... the tests for diseases in general, much less CFS... have focused on only a TINY fraction of these....

IN addition, it seems that they are quite capable of hybridizing under rare but definitive circumstances...

my point is that we don't even really know whats out there much less how much of us is capable of infecting us

retroviruses seem to be a signfigant contributor to our evolution... some of the most important proteins in our body appear to be mutated appropriations we got originally from retroviruses....

there are soo many out there... pointing to just one or two little experiments doesn't make anything... even about those classes of viruses very conclusive....

there are more strains of HTLV out there... were talking about clusters.... with diversity that has likely made them difficult to detect.... in a number of diseases.

 

[V99]

McClure I'm sure is fully aware that if there are millions of us, then some of us will be crazy. She was merely manipulating the situation.

 

[Cort]

Cort,

You say that if there were other restroviruses associated with CFS we would know....

but my point is that some of these are new retroviruses.... and many of the one's we supposedly have already sutdied... across many disease spectrums.... are now being found to have strains and variants that can move from species to species... the tests for diseases in general, much less CFS... have focused on only a TINY fraction of these....

IN addition, it seems that they are quite capable of hybridizing under rare but definitive circumstances...

my point is that we don't even really know whats out there much less how much of us is capable of infecting us

retroviruses seem to be a signfigant contributor to our evolution... some of the most important proteins in our body appear to be mutated appropriations we got originally from retroviruses....

there are soo many out there... pointing to just one or two little experiments doesn't make anything... even about those classes of viruses very conclusive....

there are more strains of HTLV out there... were talking about clusters.... with diversity that has likely made them difficult to detect.... in a number of diseases.

It does seem to odd to me that so much our DNA is loaded with retroviral sequences and yet they've only discovered three of them living in humans at this point in time. I wonder if they have come with a reason why that would be so - in any case, its a strange situation, for sure; you'd think we'd be swarming with them.

For sure, I think there could be and probably are retroviruses and viruses and bacteria living in people that we don't know about. The CAA is looking at the gut right now; from what I remember they are just developing techniques that can identify all the flora in our guts (not a pretty picture if you think about it

Look at XMRV....it was found in prostate tissues....who knows how many pathogens are hiding out in tissues that we haven't looked at that are difficult to find in the blood. At some point in the future our detection methods are probably going to look really primitive. I'm surprised at how poor researchers are at finding pathogens actually.

I do think, though, that our current techniques have not picked up other retroviruses in CFS. I base that on the idea that the WPI has some of the top pathogen arrays in the world apparently and they haven't picked them up yet. As time progresses I'm sure they will get better and better at doing that.

 

[SOC]

Whoa, CBS.

I hope you're not suggesting that we need to behave ourselves in order to be worthy of research and treatment. That would be kind of . . . discriminatory?

I don't think CBS was suggesting that. What many people here are forgetting is that researchers are people, just like us. Not only that, they're people trying to help us. All you critics are not perfect, I'm not perfect, researchers aren't perfect. There are people trying to help us, maybe they're not doing it the way you or I want. I doubt they can please all the people all the time, after all. Is it necessary to kick the people who are trying to help us just because they're not perfect by each of our personal definitions?

Do we have to earn the right to be helped? Of course not. But do researchers have to help us if we keep abusing them? No. They're people, too, you know. They can choose to work in areas where they don't get abused by the people they're trying to help. The most talented people are going to work where the work is interesting and where they think they can do the most good. Are the most talented people going to choose to work in ME/CFS if they see other researchers being bad-mouthed all the time because the patients don't understand what they're trying to do? Not bloody likely.

You have --we have --a choice. We can attempt to attract talented researchers to investigate our illness or we can turn them off to us. I know what my choice is. You can make your own choice. And we'll all live with the consequences of all of our choices.

 

[SOC]

McClure I'm sure is fully aware that if there are millions of us, then some of us will be crazy. She was merely manipulating the situation.

Betcha she hasn't received crazy hostile emails from patients with prostate cancer, for example. Researchers get very little email from patients as a rule.

 

[CBS]

Whoa, CBS.

I hope you're not suggesting that we need to behave ourselves in order to be worthy of research and treatment. That would be kind of . . . discriminatory? I'm tired of having it insinuated that we the patients are the reason we don't get appropriate care. Maybe it's our personalities: We're too introverted! We're too driven! We're malingerers who're just wanting a free ride! We speak up too much! We get mad that all these political games are being played at our expense! We complain! We write impassioned letters! We're giving THEM a reason not to help US! It's OUR fault they think we're CRAZY!

Not saying that that's what you were trying to say but . . .

Hi Gracenote,

First, I have to say that I too love the picture.

As for what I was trying to say, I definitely wasn't implying that behavior of any sort makes one person more or less worthy of treatment or research than another.

My point was that scientists are human and all patient groups and illnesses have reputations. CFS patients have more then their fair share of legitimate criticism to level at a host of players over the history of this disease and the politics are simply indefensible.

However, none of this is attractive for a young scientist asking themselves what they want to do with their career and advisors who have watched this play out will not steer students towards a field if they or a colleague have been attacked (or if they have witnessed an attack).

So no, we ought not be meek and malleable but I do think we need to recognize that our actions may have unintended consequences. There are a lot of other diseases for new scientists to study and if I were in their position and didn't know someone with this disease, I can't say that the infighting wouldn't be a consideration.

 

[gracenote]

Betcha she hasn't received crazy hostile emails from patients with prostate cancer, for example. Researchers get very little email from patients as a rule.

Prostate cancer patients aren't being told that they have "false illness beliefs" and need to do CBT. They have a "real" disease. Why do you think we're so upset? Every time we turn around we are being disbelieved.

And I think you overstate the largesse of researchers. I think researchers do research for a lot of reasons: to promote their careers, to make money, to follow something that fascinates them. How many, and I'm not faulting them for this, are doing this to "help us"? Most of them don't know "us."

And "the patients don't understand what they're trying to do?" Most of the time we understand too well. Maybe they don't like that.

I'm also kind of tired of the argument that researchers are people, too. Researching is a JOB that they get PAID to do. Our lives, on the other hand, are dependent on what they do. They can choose to go do something else; we can't. All we can do is keep begging to be heard, but we can't make them want to hear no matter how nice we are. Really, if we all just play nice suddenly we will have researchers clambering to help us? In our lifetimes?

And Cort, I must say, of all the possibilities that you could have chosen to bolster your argument, Myra McClure was an odd one. She hit first. And while I'm not in favor of anyone hitting back, she wasn't exactly working in our best interests.

 

[SOC]

Prostate cancer patients aren't being told that they have "false illness beliefs" and need to do CBT. They have a "real" disease. Why do you think we're so upset? Every time we turn around we are being disbelieved.

Okay, if you think sending crazy hostile emails to researchers because you don't like the results of their research helps anything, then go right ahead. I think it's a bad idea on principle, but that's just me.

And I think you overstate the largesse of researchers. I think researchers do research for a lot of reasons: to promote their careers, to make money, to follow something that fascinates them. How many, and I'm not faulting them for this, are doing this to "help us"? Most of them don't know "us."

I don't think I overstate the largesse of researchers. I know a lot of researchers; I base my opinion on my personal experience with researchers. Believe whatever you want based on whatever.....

And "the patients don't understand what they're trying to do?" Most of the time we understand too well. Maybe they don't like that.

Guess they went to graduate school in specialized fields for nothing, then, if us layfolks fully understand what all these researchers in all these different fields are doing.

I'm also kind of tired of the argument that researchers are people, too. Researching is a JOB that they get PAID to do. Our lives, on the other hand, are dependent on what they do. They can choose to go do something else; we can't. All we can do is keep begging to be heard, but we can't make them want to hear no matter how nice we are. Really, if we all just play nice suddenly we will have researchers clambering to help us? In our lifetimes?

Oh, that's nice. Not. I bet you wouldn't be to thrilled to read that potential researchers into our illness are kind of tired of the argument that patients are people, too.

Frankly, I'm sick of all these people bitching at our allies and I'm a patient. Verbally abusing our allies because we are miserable doesn't strike me as either productive or mature. Yeah, having ME/CFS sucks big time. I don't think that's an excuse to demean our allies and their efforts.

I'm also sick of all the negativity here at PR. I don't know about anybody else here, but running into ugliness and negativity in nearly every thread doesn't do my health any good.