Article: Time to Make a Difference Together by Marly Silverman

You can view the page at http://forums.aboutmecfs.org/content.php?362-Time-to-Make-a-Difference-Together-by-Marly-Silverman

 

But the WPI didn't use a positive clinical control either.

I already addressed this. Holding the WPI to this standard is illogical (there doesn't exist a positive control before one is found) and scientifically unnecessary (one only needs controls on the "opposite" side of their finding to show that their finding is not false...hence positive findings don't need positive controls).

Lo and Alter could not find classic XMRV.

Lombardi and colleagues failed to find PMRVs.

My understanding is that both of these statements are not as true as they were at publication time, in that greater sequence variety has subsequently been found in both cohorts.

That aside, I'm not sure what point you're trying to make. Are both of these groups guilty of not knowing every last detail of a new discovery prior to making it? If so, that is an impossibly high standard for any researcher.

 

I take umbrage with the continuous propping up of these identical negative studies on this forum w/o any discussion of their glaring flaws.

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".

 

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.

Good point...I should have reread your post. My apologies. I often get referred to incorrectly as well - so I should have checked more carefully.

“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 do want to point out that Antoni authored the study and she participated in it. He was awarded the grant.

We are forgetting the fact as well that the study was successful. These patients did get better and they are presumably happy to have participated in it. She does find that this stuff works to some degree. What is she to do? Should she ignore it because it's not politically correct? Increases in health do not come easily for people with CFS.....

I agree that its not answer and what we want it is the answer and so this type of study will always be secondary. This study.though, did not cure patients or suggest that it cured patients. It was not a Wessely/White study in that sense.......and it's findings should, in an odd way, calm patients, I think - because they did not suggest the stress reduction techniques were a cure. (The study also documented high levels of pro-inflammatory cytokines ....)

Can you argue that this study will lead to more stress reduction studies and fewer biomedical studies? I would hope not - because it clearly presented both the benefits and limitations of these practices. If I was a researcher I would not, based on the results of this study - say don't study CFS pathophysiology - I would say - this study, for whatever its benefits, indicates there are some problems to be addressed that we are obviously not addressing with these practices.

As you know Nancy Klimas does not have a pool of cash to spend on whatever study she wishes. It's all up to the grant review boards....They get their biomedical grant proposals....The best thing for us, maybe, is to continue to protest when we don't see those studies get funded. As you rightfully point out that is what we really need.

 

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

 

need to stick together

Willow,
I agree that we need to stick together.
Marly

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".

I am certainly not joking. As for a recent example, see: http://forums.aboutmecfs.org/showthread.php?9948-XMRV-not-found-in-Fibromyalgia-Patients-in-Spain.

I probably should have worded my statement more carefully. It's not that there is no discussion of flaws, but rather that whenever there is, certain individuals rush to scene to subtly undermine the WPI's findings by effectively propping up the negative studies beyond their scientific grounding. This is not done through sound scientific reasoning, but through the creation of confusion and doubt and by the weaving of fanciful narratives. "Misremembered" facts, "misunderstandings," and insidiously unscientific reasoning are among the methods employed.

Feel free to peruse my comment history for many specific instances where I have pointed this out.

I want to know the truth above all else, but I don't suffer from delusions that XMRV will be given a fair scientific hearing. The events of the past 15 months, as well as the last 30 years of CFS "science," have dissuaded me from this notion.

 

t-shirts and banners at the CFSAC meeting answer

the t-shirts was printed and created by Time for Action organizers. The banner/cards Act Now printed and created by PANDORA.

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?

 

You make a good point. We actually are often on the same page. I had a conversation once on my facebook with an individual who blasted me for not donating or raising money for WPI as well as not working on issues that the patients considered important. When I cross referenced her issues with mine, we had complete agreement on 7 out of 10. Not bad heh? meaning that she and I could comfortably work and collaborating in getting 7 issues out 10 in the forefront.

The issue of donations to WPI was resolved because I shared that I donate every month to them sometimes several times in a month in honor of my friends Birthdays when they raise money for WPI.

Putting on thinking caps... we should.
Marly

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.

Nobody said this was easy!

I'm not suggesting this....

I

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 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?

 

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.

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.

 

Thank you for your kind words in reference to our role on the Baldwin Case. It was a difficult case it took months to get it resolved. It was such a frustrating time for all concerned. But I am glad Ryan is home now safe and sound. Yet their plight continues. How do you make a family, who has suffered so much whole? It will take a long time before their healing process is done.

You pose a very good question about how do we gather financial resources to move the overall cause forward. I can tell you that PANDORA does not engage in large fundraising within our community. We have never charged membership fees. The programs we have sponsored we have always provided either free as a community service or such a modest fee to cover per example a lunch or a snack. We have done this because we know how difficult their financial situation is for the individuals we serve.

We need to support WPI in their efforts and the support can come in many different ways, not just money. Obviously money is best. It would be the best way for them to fulfill their mission. A $10 donation a month to WPI multiplied by 100 donors is a $1,000 a month. If we have 1,000 patients doing the same is $10,000 a month. Could we keep up with this kind of donations efforts, in a year period, I bet you we could. Meaning that in 12 months we would have raised $120,000 for WPI. I can tell you that this type of effort would make Annette happy and would assist WPI in their mission. Even if we were to do $5 a month, it would then be half $5,000 totaling $60,000 a year.

I am sure there are many individuals already doing this and I am sure they are grateful for this support.

This is the kind of support that Patients can build up- One patient at a time.

I will clarify again that the word "punished" meant as an admonishment of the behavior of someone who is attacking another individual publicly through the internet or is posting misinformation or inaccuracies about another. If civility, courtesy and respect is not emphasized in our interaction. Then there is no boundaries and the conversation and the dialogue is broken.

Personal responsibility is important no question about it. I do understand the frustration that at times comes to the surface. It is not a good day. The illness gets in the way of seeing things clear. We all have those bad days and usually someone apologizes and the conversation is back in place. This is not what I am talking about.

I am talking about a deliberate approach to strike against others to the point that is harmful and bring emotional turmoil to all. This is why I asked that for every act as such let's respond with a act of kindness towards one another or of appreciation for organizations which are doing the best they can to help us.

I don't understand why MCClure was appointed to the NIH SEP either. I think the government eagerness to get this SEP going did not realize the depth of the situation. Another issue of the SEP which many in our community have not realized is that the SEP as it is, is not only for CFS, but also for FM and other chronic polysystemic disorders like TMJ, therefore there is why you see rheumatologists and dentists. My issue with dentists is that because dentists are not required to have dentistry school or CME training on CFS, they are not qualified to review CFS-ME papers and probably not FM either, even though there is an overlapping of TMJ in CFS and in FM.

Potential solution: We need to ask for a SEP specifically for CFS-ME.

Current issues: It has been a setback because it will be a while before they can have another SEP in place and need to keep an eye on this too. Since the SEP reviewers are VOLUNTEERS, we might have a hard time finding another researcher to participate. Also, once a researcher participates in one SEP round, my understanding is that we have to wait an entire year to be able to recycle back. Many researcher within our community are overworked and overwhelmed already. I am praying that this gets fixed soon.



I would like to take this opportunity to address the issue below too:
"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.[/QUOTE]"

We are/I am in fact cooperating with Heidi Bauer (she has signed off on the Petition letter to the CDC) and I have often included Khaly's on e-mails with topics/concern of the CDC and the NIH. So, it is important that you know this fact. In fact I have often promoted on Facebook Khaly's Craig List efforts and have great respect for both. They are amazing individuals. So I supposed in some level I need to walk way from all of this for a while, to be able to stay focused on working on fund-raising project for PANDORA,which is important too. Cooler head always prevail, don't you agree? Thank you for your time.

Marly

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.

 

Eric, I like your ideas/suggestions for a coalition of organizations. There is why I am mentioning over and over the sense and the urgent need to unite to do joint efforts. More and more I hear this from patients across the U.S. and overseas.
Marly

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?

Cort, I wasn't specifically addressing you here, but several of the posts on page 1.

I don't think most of us are intentionally trying to create sides for the most part... most pertinently, there are some things CAA itself has said it doesn't have the time or desire to do... and so in some cases we need to find someone other than CAA to do whatever advocacy becasue that particular thing just isn't CAA's strong point for whatever reason. This isn't saying CAA is all bad, simply that CAA cannot effectively do certain things.

Maybe part of the solution is to figure out what the strengths and interets are of various organizations and advocates, and know who to ask when you want x done, and then there aren't hard feelings when organization a doesn't do x.

 

we also have to think of, is any funding and research going to help, or are there certain kinds (even particular kinds of biomedical research) which are going to help more? Especially in a situation of low or very low funding?

If there are certain kinds of reserach which are more helpful--and it's my firm and educated position that this is so--than what message we have is essential.

And if what message we have is essential, then we do have to be able to hash out the details and correct mistakes in the message without people getting defensive and accusing us of picking sides or being bullies or nitpicking or putting people in boxes labeled "pure evil".

Like has been said, we have to have grace and know that we're a community of sick people, we have bad days, we don't express ourselves clearly or necessarily say what we meant, we may have mood swings or medicines that make us grumpy.... so we do our best to be nice in the first place, but when we make a mistake we apologize, we forgive, and we go on.

 

I am thankful for this safe and calm discussion. Thank you Marly and others for spending the time dispelling the myths.

Nancy K is my doctor. She is an immunologist first and foremost. She is a human being too (I almost forget this because to me she is a saint!) She gave me her resume to pass on to the disability insurance people, in case they question her credentials. It's 30 pages long!!!!! She's authored a book on disability and MECFS. If you listened to CFSAC and the latest blood meeting you will know that she is one of our heroes and fierce advocate for our cause. She certainly didn't deserve the severe critics she got. These doctors, researchers dedicated to our cause, Nancy, Judy, Bell, Peterson, Cheney, De Merleir, they are already fighting the adversity of their peers and governments.Bell came out of retirement! They each have something to contribute in their own unique ways. Some sacrifice or have in the past sacrificed their own private life for us. The best gift to thank them for their work is to support them for what they do. and welcome new researchers trying to get in the fields... Imagine a hostile cohort of patients... If I was the researcher, I'd turn around and run...

again thanks for the civil and respectful choice of words.

 

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.

This is made my day. Didn't know the buzz (at least) was that good. Hopefully we will be out of this darkest 25 year period shortly!

Cort- It sounds from what i've heard Dr. Mikovits say, that their tests have gotten much better. This is one strong reason they should get funding. What if these rumors don't pan out as well as we had hoped and/or the usual criminals send out 10 press releases "XMRV proved to not cause chronic fatigue" like the one they did recently and 30 anti-science propaganda papers in BMJ and PLoS and the mainstream scientists then say they 'need more time to sort thru the science and more studies need to be done to see if there is an association between fatigue and a mouse virus." Who is going to come to the defense of science and us? CAA? We'll have years more of a living hell.

 

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.

Klimas' gaffs like saying 'chronic fatigue' are like nails on the chalk board to me. Overall, though I think Klimas is great. She could have stayed on the AIDS research gravy train, but she helps us a heck of a lot instead.

re the contention that CDC isn't bad: F*** CDC's "CFS" program! It's an evil POS. I hope Reeves, Unger and the other criminals get more than their fair share of papercuts and traffic jams!

This Phoenix will be Rising from the ashes of CDC's "CFS" program after it burns to the ground (metaphorically speaking of course :innocent1.

 

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.

 

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.

Cort is in the post I quoted above:

[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.

 

I'm not a US citizen or resident and don't have much experience with the CDC, so i'm probably not really qualified to judge them, but i think we might want to be careful in how we are dealing with them.
I don't know what the best approach is, but since the CDC is an agency where 15'000 people work (according to Wikipedia) and is probably a pillar of the US health system and only a small part of it is dealing with ME/CFS, i think we should not call for the dissolution of the CDC or something like that.
I think we should try to be as precise as possible and pinpoint what's wrong or what has been done wrong by whom and only try to change that or hold those people responsible. The CDC is probably there to stay and i think our end goal should be a good relation with the CDC and getting the maximum possible help from them. Of course they and their actions need to change.