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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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But the WPI didn't use a positive clinical control either.
Lo and Alter could not find classic XMRV.
Lombardi and colleagues failed to find PMRVs.
I take umbrage with the continuous propping up of these identical negative studies on this forum w/o any discussion of their glaring flaws.
Cort, I didn’t say that Dr. Klimas’s “priority is not the patients.” What I said in my post was this: “I believe Klimas’s name on that study shows that her priorities are not always patients’ priorities, no matter how proactive she’s been to the cause over the years.” I believe that’s true. If you polled every patient on this forum, I believe most would say that they would rather have had Klimas do a biomedical study than a CBT one.
Cort, again this is not what I said or meant. Nancy Klimas has been a strong advocate for ME/CFS. I believe, however, that her doing the CBT study was a waste of precious research dollars that should have gone to biomedical research.
“I believe one of the reasons that patients became so pissed about the recent Klimas study was because it felt like a slap in the face: How could Nancy Klimas, who knows full well that biomedical research is what’s needed, participate in a cognitive behavioral therapy study?"
I think it's both/and. We need to stick together and not be divisive unnecessarily. And we also need to be able to correct misstatements and mistaken focuses.
I think our problem is more in tone and defensiveness, than it is in having people who are just divisive by nature. Our problem is out there... not in here... and that includes "patient bullies" and noisy wheel advocacy persons and groups.
We can't say no one is allowed to make suggestions or criticisms (or will be automatically ignored when they do). That would just be more tyranny.
If you're going to give CAA a free pass for any and all perceived transgressions, you have to give Mindy and other squeaky wheels a free pass for any and all perceived transgressions, too. That's basic fairness. No sweetheart deals.
Ultimately, to work together, we have to find a way to create a give-and-take environment, where we can trade ideas and make suggestions and constructive criticisms in a respectful manner. We have to do this in order to win the war for proper medical care.
So how do we get there, from here?
respectfully,
Willow
You're joking right?
If not, please post a link to a thread from this forum where these negative studies have been "continuously propped up w/o any discussion of their glaring flaws".
Just a general question and I'm not expecting Marley or anyone to feel put on the spot. So please don't worry
Whose idea was it for patients to have printed T-shirts, small banners at the CFSAC meeting?
I think most of us are on the same page, we maybe just don't know it yet.
As far as patient bullies on forums, we need to stop listening to the few who try to tear everyone down. If nobody listens or responds to them, then they are no longer powerful. Report them to the moderators instead, or don't visit their forums. Don't participate in their drama.
For the bullies in power who want to keep the psychobabble status quo - this is where we need to put our energy. They have entire careers, money, status, etc. invested in their point of view, so they aren't going to change easily or willingly.
Marly brings up a good point - how do you organize everyone, so that if you want to Fax the Ad or whatever, you get a good participation rate? We are lacking this right now.
Let's put on our thinking caps...
think it's both/and. We need to stick together and not be divisive unnecessarily. And we also need to be able to correct misstatements and mistaken focuses.
f you're going to give CAA a free pass for any and all perceived transgressions, you have to give Mindy and other squeaky wheels a free pass for any and all perceived transgressions, too. That's basic fairness. No sweetheart deals.
I think there should be some sort of forum (i mean forum in a general sense, not an internet forum) where the exponents of the different organisations can connect and discuss their points of view, try to come up with a common strategy etc.Marly brings up a good point - how do you organize everyone, so that if you want to Fax the Ad or whatever, you get a good participation rate? We are lacking this right now.
Time to Acknowledge Difference
First, Marly, I want to thank you for the things PANDORA under your leadership have accomplished. I know that you took an active advocacy role in the Ryan Baldwin case.
I don't think UNITY really is the issue here. My take on this is how does a community with very few financial resources and diverse views on our political situation create a coalition that can acknowledge differences in agenda and styles of expression. There is a need to support both research and advocacy, but how do you do this when so much of the patient population has been reduced to penury.
There is a very strong argument for a concentrated focus on funding the WPI, both as a clinical and research entity, as the strongest and quickest way to achieve legitimacy at this particular historical moment. Once legitimacy and innovative treatment protocols are realized then other initiatives can be advanced.
As for internet decorum, I agree that tone matters, but that is a matter of personal responsibility. Your desire to see speech "punished" is very problematic in my view. As obtuse, stupid, and sometimes, vicious, as some of the speech is, it's important to be mindful that its wellsprings are great sadness and frustration. This doesn't justify lashing out but evading difficult issues in the interests of being "nice" and reasonable isn't the answer either.
With the Lombardi paper this community found a voice that it had lacked for decades: it found hope. But it's an imperiled hope, confronting a great deal of resistance, and, frankly, in my view, bad faith amongst many scientists and government officials. How does a Myra McClure get appointed to a SEP committee on CFS?
What can patients do to cultivate that hope, sustain it through some bitter times, and not turn justified anger into self righteousness. My way is to support the WPI, because of my belief, that at least in the short term, this will see us through.
And one more thing:
You should read both Heidi and Khaly's take on the matter of manufactured, inauthentic unity. Characterizing their views as minutia displays short sightedness. Complaining about abusive, dissenting voices lacking credibility but refusing to engage with those who are civil and willing to be in dialogue with you is a mistake.
I think there should be some sort of forum (i mean forum in a general sense, not an internet forum) where the exponents of the different organisations can connect and discuss their points of view, try to come up with a common strategy etc.
There are conferences for the scientists, why aren't there such for advocates, advocacy organisations? Or are there?
This should happen on a regular basis, so everybody knows each other and what they are doing at the moment and so that some routine in working together can develop.
Of course, many of those people have ME/CFS themselves, so they may not be able to travel, but technology could help solve this problem.
And i think in the USA there are several state organisations, like the one from Massachusetts. Is there some sort of umbrella organisation that unites them? If not, wouldn't that be a good thing? So they could also do some joint actions more easily.
Nobody said this was easy!
I'm not suggesting this....
I have laid out my critiques of the CAA many times. Maybe the problem is the focus on transgressions rather than possibilities. Are we getting tied up too much and focused too much on 'transgressions'? instead of working towards possibilities? Do we have a vision of success - are we working out of that? Or are we more focused on what's wrong and proving that 'we're right'.
The most important question to ask may be 'what works". What outcome am I moving towards when I do 'X'. For what am I doing 'X'? Am I creating 'sides' by doing that or I am empowering the community as a whole in its goals of getting more research and more funding?
That's because everything rests on having an independent lab find XMRV.....and the WPI showed them how to do it in the first paper and in their amendment to the first paper. That's the blueprint for finding XMRV. That's all researchers need to know. There is literally nothing else (unless there is some weird little factor that is not elucidated in the first paper) they need to know! You can show how variable XMRV is or that it kills these cells or those cells or that it inserts itself here or disappears from the blood of monkeys after 3 weeks or whatever and all those things are just window dressing at this point.
XMRV will live or die based on the WPI's descriptions of how to find it...
They could come up with a better test - that is one thing they could do - they changed their testing procedures once...and they could change them again....but I wonder how that will change things. It's not as if other groups are finding 20% or 30% positives and a better test would bring that figure up. They're not finding anything...that's a tough nut to crack...that's a different problem from we just don't the optimal test....
I have been told some studies are coming out that will duplicate even the smallest aspects of the WPI;s test. They will use the same reagants, etc.....Those sound like replication studies......and they will be quite important.
There is a huge difference between critiques that empower and attacks that tear down. In one critiques occur as a way to empower that organization - they occur out of a vision of that organization working; in the other it's hard to say there is any vision involved at all - there is anger and frustration but no vision. Many 'critiques' simply trying to prove their point and it's usually a quite black and white point that comes from a belief that the CAA, for instance, is bad or the CDC is bad - and everything the author writes is written to prove the point that that person or institution is bad.
That's an interpretation to have and its a popular one. It's easy, you get a nice righteous feeling - I'm right and they're wrong! It's enticingly simple and it feels so good to be right doesn't it? But does it work? ..Is it an empowering interpretation? Is the interpretation that any organization is all 'bad' - and I mean ANY organization including the CDC and NIH - going to do anybody any good? First of all it completely cuts off any lines of communication. Secondly, while it's enjoyable to have things be so cut and dry - it's just not accurate - the CAA does alot of good work... the CDC has done some good work in the past.
I could take the intrepretation that the ME/CFS Forums hate me! I get trashed there fairly regularly but I recognize that is not a true statement...the fact is that some people in the ME/CFS Forums really dislike me and are very vocal about and I assume others feel differently. Similarly, some things the CAA does are very good and some they do are not so good. Some things the WPI does are very good and some things they've one are not so good.
There are points to build on with every group and 'building' does not mean that strong critiques are not delivered. PANDORA delivered a strong critique of the CDC but it was delivered in a way that it could be responded to; it opened a dialogue.
Putting Groups and People into a Box - The problem occurs when you start putting people and organizations into a box and then start interacting with them like that's' how they are. The thing that chilled my bones with Mindy's post was the statement that Dr. Klimas priority is not the patients. By the time I was done ready I got the impression that Dr. Klimas was being put in a box - and it was a pretty dark box.
Dr. Klimas is not Dr. Wessely but she was in the process of being put in, or at least close to, Dr. Wessely's box. Her career has been focused heavily on elucidating the pathophysiological side of CFS. If it wasn't for Dr. Klimas we wouldn't have natural killer cell dysfunction to point to. Yet because of that study she was being thrown into that box.
I get that the study was upsetting but if we look at Dr. Klimas's career her interpretation of Dr. Klimas is simply not accurate and we need to be accurate! It wasn't an accurate interpretation of a woman who has spent much of her career arguing that CFS desperately needs more pathophysiological research and participating in that and who will continue to do that.
A Different Interpretation - My guess is that face with a CBT study Mindy only had one interpretation available - she's the enemy and can't be trusted. I suggest a different interpretation: Dr. Klimas has found that stress reduction practices are helpful in improving the quality of life and yes, health of some of her patients, and like any good physician she will do anything she can to help her patients. Dr. Klimas also finds that stress reduction practices are not a cure and because of that she is continuing her efforts to elucidate the true cause of CFS. Last year she stopped doing AIDS research entirely in order to focus solely on CFS - expect more immune papers from her in the future.
Missed Opportunity - Mindy had a strong vision of patients acting up forcefully and demanding more funding in very public ways...it was the most important part of the blog and took up most of it, and it's unfortunate, and I imagine that she is a bit chagrined that this other part of the blog has gotten much of the attention.
I don't think anyone is saying CDC isn't bad. CDC is bad, evil, deranged. CDC is malfeasant. CDC is part and parcel of the "them" who is "out there" identified as "the enemy." CDC and the rest of the Wessely school who have made themselves our mortal enemies, who hate our guts (figuratively and literally both) and our encephalitis.
[T]he interpretation that any organization is 'bad' - and I mean ANY organization including the CDC and NIH - ... s just not accurate... the CDC has done some good work in the past.