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

 

Not any more: PANDORA's announcement: http://www.facebook.com/#!/notes/pa...nnouncing-response-from-unger/193365030683369

Another petition may come after the meeting, based on how it goes, or maybe even something different.

Also, this is an example of what can be done with organizations and advocates work together.

This is good news! And, as you point out and I think PANDORA impliedly acknowledges, we'll see if they indeed will change substantively.

Thanks to PANDORA and all the other orgs who came together for the petition. I totally agree with it (and signed it).

 

I don't think she's with you Justin. She won't work with Pandora because they will work with the CAA and me...MCWPA is probably in the same boat because they will work with other organizations.

OK. We're not in total agreement about the specific orgs. But, I agree in general with the principles she articulated. Incidentally I and Khaly probably agree, though I don't think she made this point in her post, that the onus isn't on us to 'build trust' with CDC as Marly suggests, since CDC is fundamentally untrustworthy and we have done nothing to damage trust with CDC.

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For me she starts off by drawing lines again - the 'independents' (who are the independents anyway? Am I not an independent?) vs the organizations.....notice the attempt to split,...the independents do these things but PANDORA, MWPCA - does not????

Marly first employed the term "independents" and I don't agree with you that Marly is attempting to 'split' us or call us a derogatory name with the use of that term.

Like you, I do not really see a fundamental divide between PANDORA, MWPCA and 'independents'. I see the difference mainly in having incorporated which isn't a really meaningful difference in this instance, imo.

Phoenix Rising promotes disingenuous and under-investigated statements as fact, and fails to divulge fact when it doesnt suit its purposes.

Somehow I've failed to divulge information (which information? I don't have the slightest clue -nobody has said)...

I don't know which information you failed to divulge and Khaly didn't say you failed to divulge any info so I don't think she knows either. Are you feeling guilty and want to get something off your conscience? : )

Then a plea to stop the infighting turns into an attack on the 'independents'.

I assume you are still talking about Marly and I then agree with you and Khaly that it is not the "independents", who need to reassess their strategy and tactics, but CAA.

OK, I'm having fun twisting your words, but this post is such a mess of ascribing the wrong words to the wrong people, it's hard to respond to this incoherence.

 

OK. We're not in total agreement about the specific orgs. But, I agree in general with the principles she articulated. Incidentally I and Khaly probably agree, though I don't think she made this point in her post, that the onus isn't on us to 'build trust' with CDC as Marly suggests, since CDC is fundamentally untrustworthy and we have done nothing to damage trust with CDC.

Marly first employed the term "independents" and I don't agree with you that Marly is attempting to 'split' us or call us a derogatory name with the use of that term.

Like you, I do not really see a fundamental divide between PANDORA, MWPCA and 'independents'. I see the difference mainly in having incorporated which isn't a really meaningful difference in this instance, imo.

I assume you are still talking about Marly and I then agree with you and Khaly that it is not the "independents", who need to reassess their 'strategy' and tactics, but CAA.

OK, I'm having fun twisting your words, but this post is such a mess of ascribing the wrong words to the wrong people, it's hard to respond to this incoherence.

Right, I wasn't talking about Marly and don't think 'independents' is a derogatory term - that term usually has positive connotations. I think everybody has to reassess their strategy and tactics.

 

Oh, PANDORA is not trying to build trust in CDC. OH my, that's not it at all.

But, Unger says she wants to build trust which is a reason that she is having the meeting. Not PANDORA's words, just relating the reason she told us for why she agreed to meet. Also, she will go over the nine action points.

At some point, the many things patients have been wanting to happen at CDC will start to happen. Will we recognize when change starts to occur? Patients have long wanted CDC to listen to patients. And acknowledge if not discuss the changes patients want.

Well, the letter from PANDORA and ten other organizations and independent advocates has got that, what patients wanted. Are we there yet? By no means. But it is a first step. Trust is earned. Communication is necessary for trust. There is a long, long way to go to have trust. But, the first step, communication and discussing what patients want, is now going to happen. In other words, this is a small but important win for patients that might lead to much more.

Will we remain in the victim and war mode and thus hinder progress when progress starts? Or will we assertively and firmly sit down at the table?

You know, the battle field is where war happens. But peace is made at the table. However, the battle is needed to get parties to the table. That has happened.

But that doesn't mean further, and possibly bolder, action won't be needed in the future. We'll have to see how the meeting goes.

But, this is a dramatic change in the whole history of CDC in the CFS research.

While Unger has a long history in CDC, PANDORA knew that she did not have power, she was not the boss. So a strongly-worded, but professional and inviting letter was the best way to be firm but give her a chance since she was now able to direct things as the newly-appointed chief. We really don't know what she will do yet.

But, she is doing something no one else at CDC has been willing to do. Talk and listen. First step.

 

But, she is doing something no one else at CDC has been willing to do. Talk and listen. First step.

I desperately, truly hope that this is the beginning of a chink in CDC's armor. But CDC has been "talking" and "listening" for years.

Just one example, out of many: the CDC "listened" by asking for public comment on its five year strategic plan in 2008. Hundreds (I believe in the 600 range) of patients submitted written comments. Dozens (I think at least 30?) people appeared in person at the CDC meeting to give public comments, and more people (myself included) called in to give comments by phone. There was no doubt what we all thought of their strategic plan. There was actually great unity in our comments.

How well did CDC listen? Do we even have to ask that question?

I completely agree with Tina that talking and listening is a first step. And my belief is that we will keep pushing and advocating if the talking and listening is disingenuous. I'm just cautioning - been there, done that, let's expect proof.

 

Yepper. PANDORA will certainly be looking in the pudding to see if there is any proof there.

 

I desperately, truly hope that this is the beginning of a chink in CDC's armor. But CDC has been "talking" and "listening" for years.

Just one example, out of many: the CDC "listened" by asking for public comment on its five year strategic plan in 2008. Hundreds (I believe in the 600 range) of patients submitted written comments. Dozens (I think at least 30?) people appeared in person at the CDC meeting to give public comments, and more people (myself included) called in to give comments by phone. There was no doubt what we all thought of their strategic plan. There was actually great unity in our comments.

How well did CDC listen? Do we even have to ask that question?

I completely agree with Tina that talking and listening is a first step. And my belief is that we will keep pushing and advocating if the talking and listening is disingenuous. I'm just cautioning - been there, done that, let's expect proof.

Very well said, Jennie!

 

Oh, PANDORA is not trying to build trust in CDC. OH my, that's not it at all.

But, Unger says she wants to build trust which is a reason that she is having the meeting. Not PANDORA's words, just relating the reason she told us for why she agreed to meet. Also, she will go over the nine action points.

Marly said in her article/blog:

I know it will not be easy, but we have to start building trust, interaction and networking among the patient community and our government officials, and the sooner the better.

Saying "we have to start building trust" implies that it is we that have to be doing things to show we are trustworthy. Maybe she misspoke.

 

Wiil this meeting include what is going on with XMRV research and the goals for XMRV funding?

 

Mindy's Blog post
I have great respect for Mindy and for what she does on behalf of our overall community of suffering. I wholeheartedly agree with Mindy and I wholeheartedly support her powerful statement that "We are not Crumbs". What I disagreed was with her take on Dr. Klimas and I respectfully explained why. Yet, I am not saying that she cannot express her views. But she just assumed that her position was one that ALL advocates embraced.

Marly, I do not believe, nor did I say, that my position was one that ALL advocates embraced. Its a faulty supposition. If everyone felt the same way as I do, there would have been no reason for my editorial. In the future, please refrain from attempting to divine my motivations or thought processes. Ask me instead.

One more thing. With this in mind, you wrote in your initial piece, I would like to ask Mindy to please reconsider the statement made against Dr. Nancy Klimas. I also ask you to join me in this request.

I found your call to the ME/CFS community to try to get me to retract my words a veiled (and failed) attempt at bullying. Just so you understand where I'm coming from: I don't yield to peer pressure, and I will never back down if I believe that I'm right.

You questioned in your piece, When are we going to realize that this internal bullying approach is wrong? My point exactly.

 

I desperately, truly hope that this is the beginning of a chink in CDC's armor. But CDC has been "talking" and "listening" for years.

Just one example, out of many: the CDC "listened" by asking for public comment on its five year strategic plan in 2008. Hundreds (I believe in the 600 range) of patients submitted written comments. Dozens (I think at least 30?) people appeared in person at the CDC meeting to give public comments, and more people (myself included) called in to give comments by phone. There was no doubt what we all thought of their strategic plan. There was actually great unity in our comments.

How well did CDC listen? Do we even have to ask that question?

I completely agree with Tina that talking and listening is a first step. And my belief is that we will keep pushing and advocating if the talking and listening is disingenuous. I'm just cautioning - been there, done that, let's expect proof.

I well remember Jennies comments. I actually felt a little chill run down my spine...and I'll be she was harkening back to the National Press club event where both the NIH and CDC reps stood up and said we have to do more for this disease - and then things really fell apart. A huge amount of understandable distrust has been built up..

Dr. Unger is the wild card though. Its hard to imagine this meeting taking place under Dr. Reeves. I don't expect mountains to move but the meeting will give the reps a good look at Dr. Unger and what she proposes and open lines of communication.

 

I desperately, truly hope that this is the beginning of a chink in CDC's armor. But CDC has been "talking" and "listening" for years.

Just one example, out of many: the CDC "listened" by asking for public comment on its five year strategic plan in 2008. Hundreds (I believe in the 600 range) of patients submitted written comments. Dozens (I think at least 30?) people appeared in person at the CDC meeting to give public comments, and more people (myself included) called in to give comments by phone. There was no doubt what we all thought of their strategic plan. There was actually great unity in our comments.

How well did CDC listen? Do we even have to ask that question?

I completely agree with Tina that talking and listening is a first step. And my belief is that we will keep pushing and advocating if the talking and listening is disingenuous. I'm just cautioning - been there, done that, let's expect proof.

very true!

Of course, we (whoever all is represeting us) go in good faith, but with moderate-to-low hopes and a high degree of healthy skepticism (or caution, discernment, however you want to call it).

 

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Saying that the money is better handed over to the WPI, rather than a new national body (or coaliton or whatever) is false economy, because it is betting ones funds on a single horse. Whereas supporting a national organisation (assuming it meets its mandate), will increase the pool of funds.

I guess there are several problems:
Organisation and leadership. The most successful organisations in the market place become successful due to a variety of competitive advantages. But with CFS/ME, there aren't many such advantages that can be leveraged to form a powerful organisation.

In the competitive marketplace the organisations with poor quality organisational structure and leaders simply die. But we don't really have that luxury as we don't have a product that can be sold to the masses, so there aren't going to be many successful attempts of forming such organisations.

But any structure that is to be successful must be transparent and must be responsive. If you are not actively polling your members regularly (even if you have to demand such participation), then you aren't going to be responsive. You can't assume that you are doing a good job just because people aren't complaining loudly.

In Australia, we are moving towards a national body, simply because there is not enough funding for the various groups to survive on their own. Forming a national body grants access to funds that wouldn't otherwise be available.

By the way, support of such an organisation does not mean we have to give up our independent voices.

But really, as independents, how well have we leveraged the literature that shows there is a massive disconnect between the economic costs (see papers by the CDC & Dr Jason), disability, the complete lack of 'curative' treatments and the tiny amount of research funding available?

If you compare the papers on economic costs on other diseases and NIH spending, you find that CFS is underfunded to the tune of 20-50 times!

Maybe we need to change the name to 'Chronically under-researched fatigue and immune disfunction disease'. Actually, can anyone come up with something similar but with a catchier acronym?

 

In the future, please refrain from attempting to divine my motivations or thought processes. Ask me instead.

Well Mindy, It is a shame that you did not give Dr. Klimas the same courtesy you expect. The fact is you either did take time to get the facts or worse you decided to ignore them. You should just admit you were wrong and move on.

 

Waste of Energy

It is an epic letter isn't it? This is like a mission statement for the CFS community in my opinion. This part really got to me



What a waste of energy to turn on each other instead of directing that energy toward making a difference.

And we do tend to focus on the negatives..on what hasn't happened...that's understandable to some extent since we don't have alot to celebrate..but we are were we are and focusing only on the negative stuff is not exactly community building.

I think we'll be up against it until the we get good funding...it'll be a Sisyphean task until we break through. Building is always the most difficult part...you put ten in and you only get one out but eventually you do gain inertia and the ball does start to roll uphill.....

SO much to Do, So little Energy... I support EVERY organization and Person working to further research and help Patients re: ME/CFS. GREAT letter Marly, Thank you for have the Courage and using your energy to write it.

I will assist any group or person trying to make a difference, even if I do not agree with every word they say, because that is moving forward. I do look at their efforts and if they are making an effort to Act in helping on the patients behalf, I will do my best to assist. Sitting and waiting for a person to make a mistake or mis-word some reply or fumble a bit in making a statement, so you can rip them apart while sitting in front of a computer, while taking ample time to weave a web is absurd. If one can do better, then get up and Do. If you are too ill to be up, then you should be thanking those trying to make things better for us all. As I write this I am in the bottom of a relapse and I thank God others are willing to expend their Life (Energy) for myself and others. I am grateful and humbled that others are willing to put their lives in jeopardy for me. When I have it, I try to use it wisely. I refuse to be a Waste of Energy.

 

Eggs in a Basket

If this is indeed the main problem I don't see a problem. PANDORAa and the MCPWA support the WPI and Phoenix Rising has as well. but you can't wring water out of a rock - none of us has ANY money - and certainly not the kind of money the WPI needs.

The CAA has not provided money to the WPI but we know they had to slash their workforce dramatically because of their money problems and their first Biobank study is an XMRV study with a company that has a huge incentive to find XMRV - Glaxo Smith Kline. Validating XMRV's presence is the most important thing anyone can do right now - and that study will play a key role in doing that.

The truth is that absent a major, major donor nobody has the kind of money the WPI needs and major, major donors, for some reason, are just incredibly rare in the CFS community. A major donor could step up and provide $5 million dollars and settle the WPI;s problems. That happens in other disorders all the time but it doesn't happen in CFS.

The solution is either major donors, alot of little contributions and grants and grants are obviously a huge part of Research Institute's success - that's big money and hopefully the WPI can figure out a way to get more of them.

Cort, I had a really smart Aunt who would remind me often, Never Put All your Eggs in One Basket. We must have other research getting funded. I have given to several including WPI, but there are other great ideas/researchers out there, Such as the recent findings: Of disease-specific proteins lets you separate one disease from another, says Steven E. Schutzer of the University of Medicine and Dentistry of New Jersey-New Jersey Medical School. In the new study, researchers looked at the spinal fluid of three groups of people: 43 CFS patients, 25 people treated for Lyme disease who did not fully recover and 11 healthy people. They underwent lumbar punctures as part of their medical evaluation and the banked samples were used in the study. The researchers identified 738 proteins found in the CFS patients, but not healthy people or the treated Lyme patients. And they identified 692 proteins in the treated Lyme patients that werent in either CFS patients or healthy controls.

While this shows that the two conditions are distinct, it is still a long list of proteins. Researchers now want to start narrowing it down to find candidate biomarkers, Schutzer tells the Health Blog.

Some of the proteins in the spinal fluid may ultimately be shown to fuel the conditions.

Schutzer is also involved in a separate study looking for microbes including the virus XMRV


You know I like this blog site, but it is not the only one I contribute to when able. There are some great ideas and information here, but I have seen some great ideas and information on other sites as well.

 

Noone is putting all the eggs in the basket. Since WPI found a potentially infectious cancer/neuroimmune causing retrovirus should that not be persued? I think that's a pretty important thing considering our families and other people could be at risk of infection. Noone said WPI wouldn't be looking at anything else they are a nueroimmune institute. But until this is figured out I personally want XMRV to get the attention it needs to and the funding. Especially since I carry the retrovirus. This reference is like saying let's put HIV on hold. Which they did for way to long and how many people had to become infected that shouldn't have?

http://jvi.asm.org/cgi/content/abst...rv&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT

Early Events in Retrovirus XMRV Infection of the Wild-Derived Mouse Mus pahari