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

 

Wow. Thank you for a beautifully expressed, epic letter.

I agree with all my heart, that it is vital that we end the divisiveness. We who have been treated with disbelief, disrespect, and disdain for so many years should know how important it is to be listened to and spoken to with respect. We may not always agree with each other, but we can still treat each other with basic kindness. We have to stick together.

And you have inspired me to find a way to give more to our community and the organizations that are working so hard-- each in their own way-- to help all of us. Yeah, I'm "tired" ... we all are. But one small step taken by a million people is a million steps ...

 

So well. Very positive and constructive.....and today I was able to read such a long post right through, thanks to feeling a bit better.

We must always remember that we as the M.E./FM community have a common goal and if we don't push constructively towards change who will really care?

 

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

Wouldn’t you think that 3 and half decades of getting “crumbs” as Mindy stated would not have induced a much smarter approach from our “independent patient advocates” also to create change? Instead what I have seen year after year, after spending 12 years watching the internal fracturing, bickering, anger, bitter disrespect, rage, and demonization of one another or of organizations across the board simply because one might not agree with another individual. It is pitiful! It has to stop! It has to begin right here. It is a waste of stamina, energy and creates emotional turmoil. The time one spends on forums creating disharmony and chaos could be better used to create change that is meaningful and powerful.

What a waste of energy to turn on each other instead of directing that energy towards 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.....

For every naysayer complaining of an organization, point to something good these organizations have done.

 

This is not uncommon in illnesses where the science is not clear. Disputes among researchers, disputes among government agencies, disputes among physicians. And, sad to say, disputes among patient organizations and patients themselves.

I am seeing a common message though, fund more biomedical research. That is something we all can agree on. And this message is getting to be an international one.

To make a difference, we need to work together to pool resources and have more influence. So whereas there are going to be differences of opinions on some matters, maybe we can all try to find common ground and support and cooperate with each other on matters where we agree. Maybe put the energy there.

 

Yes I think it's time to get back on track and all patients focus on the fact that a newly discovered human retrovirus XMRV has been found and is not being funded. Why is that? While everyone has been preoccupied who's been watching what is really going on? They are trying to bury the research and us again.

 

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...

 

Marly takes issue with Mindy's blog post, "We are not crumbs" on CFS Central HERE. Apparently, it is wrong to question the motives of some people. An excellent response to Marly's points is made by Khaly in "Rules of Engagement" on CFS Untied HERE. The points made by Khaly are further expanded by Heidi in "Sacred Bovine" in CFS Chronicles HERE.

We are being talked down to and told less than the truth. In these days of internet communication between communities, this is not acceptable, nor is it wise. Our 'leaders' need to show a bit more humility.

The main point of contention between the independent advocates and the members of CAA, PANDORA and MCPWA is the latters' lack of support for WPI funding. Many people feel that supporting the WPI is key to progress, and that they will again change the game, as they did in October 09, but they need and should have the support of the patient advocacy organizations.

The independent advocates are making a difference to Retrovirology, PLoSONE, TWIV, the list goes on. We have ongoing initiatives for funding the WPI. We help and support individuals with ME/CFS. We deserve more respect. PANDORA needs to listen.

 

Thank you!

Francelle, This was one of the most difficult things I have had to do in a long time. It further opened my eyes to two main items: 1)That I am not alone in my frustrations. 2) And that there is so much that we need to do within the community to build mutual trust so we can drive advocacy efforts for the NEIDs community forward. I remain optimistic though that because of the post, we are now looking at ways to communicate among ourselves in a way that promotes our cause effectively.

I welcome you comments on the blog as well. The more constructive comments is posted there, the stronger the message gets across our community.
Marly

So well. Very positive and constructive.....and today I was able to read such a long post right through, thanks to feeling a bit better.

We must always remember that we as the M.E./FM community have a common goal and if we don't push constructively towards change who will really care?

 

Biomedical research is the KEY - no more hand-outs for NEIDs!

You are correct. All of these competing interests do not make easier on patient advocates and organizations representing patient to navigate the land mines. We must join together in promoting the items/the topics we all agree or the majority agrees. We are falling way behind in getting things accomplished. But there seems to be a fresh approach now by our government health officials. We must capitalize on this fresh take and not ose the opportunity simply because we are spending our time and energy bickering among ourselves.

Time for a change! from the bottom up.

This is not uncommon in illnesses where the science is not clear. Disputes among researchers, disputes among government agencies, disputes among physicians. And, sad to say, disputes among patient organizations and patients themselves.

I am seeing a common message though, fund more biomedical research. That is something we all can agree on. And this message is getting to be an international one.

To make a difference, we need to work together to pool resources and have more influence. So whereas there are going to be differences of opinions on some matters, maybe we can all try to find common ground and support and cooperate with each other on matters where we agree. Maybe put the energy there.

 

Yes, we do have to stick together! thank you.

Emmanuelle, thank you so much for your inspiring words. I love your quote "Yeah, I'm "tired" ... we all are. But one small step taken by a million people is a million steps .."

Wow right back at you!

Marly

Wow. Thank you for a beautifully expressed, epic letter.

I agree with all my heart, that it is vital that we end the divisiveness. We who have been treated with disbelief, disrespect, and disdain for so many years should know how important it is to be listened to and spoken to with respect. We may not always agree with each other, but we can still treat each other with basic kindness. We have to stick together.

And you have inspired me to find a way to give more to our community and the organizations that are working so hard-- each in their own way-- to help all of us. Yeah, I'm "tired" ... we all are. But one small step taken by a million people is a million steps ...

 

Waste of energy to turn on each other...

Cort, It has been encouraging to see that many like you have expressed the same sentiments. We have now an opportunity to make history. We cannot remain stuck in the old ways.

Funding for biomedical research like you expressed is fundamental. We should all work towards this goal as one major push. This message is coming loud and clear by all. We must get the ball rolling. It is time.

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 towards 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.....

 

We need to be smarter. We need to collect connect the dots. The time is now for an all out effort by ALL to take ownership of our future and the future of millions of ME-CFS patients by collaborating

I stand by this quote. 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 [emphasis added].

Totally agree with this. I think this is the only way we can defeat CFS. We have to use the great potential that is in our number. As individuals most of us are weak because of our rather poor health, but united we could be a huge force.

 

I do not subscribe to the theory that “organizations have failed us”.

This is a bizarre statement to make, given the context of the history of ME/CFS. Have you not read Osler's Web??? It is full of organizations that have failed us, chief amongst them the CDC. I would also add the CAA to that list. Of course supporters of the CAA are free to disagree.

 

Golden Rule (of Engagement) - Do unto others as you would want others do unto you.

Jace, I am a follower of the Golden Rule (of Engagement)- Do unto others as you would want others do unto you.

There are two issues discussed in my blog post. One the paragraph Mindy wrote about Dr. Nancy Klimas, a beloved physician and researcher in our community. The other the half-thruths, assumptions, bickering, attacks, lack of civility, respect and courtesy not being mutually shown in our community resulting in a waste of time, resources, stamina as emotional turmoil.

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. It is not the case. All I wanted to do was to present the facts that are missing.

It is also important to say out loud once again that PANDORA strongly supports and advocates for BIOMEDICAL RESEARCH. So do I, and on this take I wholeheartedly agree with Mindy. This is what we are fighting for...and I think you do too.

The role of independent Advocates in the Internet
I love Independent Advocates! They bring a voice that is much needed indeed. It well validates the concept of the power of ONE and how ONE can make a difference. But is also has its distractions. We are witnessing it now. Nothing is perfect is it? There is always the ying and yang.

I also have great respect for Khaly and Heidi and thousands of other individuals who are struggling with this illness. Nonetheless, by the response we are receiving of my blog post I know that what I raised is a concern shared by many.

There are several issues that we could discuss until the cows come home. I can assure you and anyone in our community, that I have no egos. I have consistently worked with patient organizations across a large divide. I have also worked with many independent patient advocates across a large divide. Ask around, but I cannot stand silently and or idly when there are deliberate attempts by certain individuals to harm the work we have done at PANDORA. Some have recently posted inaccuracies on the internet and when questioned about it, they claim that their first amendment protects them. Well, you cannot yell "Fire" in a crowded theater, nor you can accuse someone or an organization of something that could possibly fall under libel. When one individual was questioned on the issue and volunteered to fix the inaccurate statements, the individual did not honor it. You and I both know that in the internet, reputations can be destroyed in a New York minute.

I honestly expected more reasonable advocates to refute these postings, instead what I witnessed was a frenzy on the internet with the more radical voices taking over the dialogue. There is another reason why I wrote the blog. I had to take a stand and could not remain silent.

Like you, I want a strong leadership across our entire community and that means everyone who is a stakeholder in our community and has the capability to influence others must also adhere to standards of civility, courtesy and mutual respect. We must require these noble goals from every leader representing us.

I personally love and enjoy a healthy respectful debate. It brings new vision, it brings new ideas and it brings new resolution. Unfortunately what I often see is public displays of name calling and pointing fingers ad nauseaum. It must stop. Cooler heads must prevail and effective advocacy efforts can move forward.

If you noticed right on the top of my blog, I quoted Benjamin Franklin.
"For having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions, even on important subjects, which I once though right but found to be otherwise." Benjamin Franklin

What I am suggesting here? Simply that I am not always right. Simply that I can be persuaded to change my mind. Therefore I can reassure you that egos are not part of this at all.

The anger we all feel must be directed to build trust among ourselves, not tearing it down. PANDORA as an organization, we do listen to our constituency and we are engaged with it. I personally wish we could do more. You mention a point of contention regarding not raising funds for WPI. I do believe this is a question that you need to ask WPI directly.

I would like more than anything in the world to personally be able o give millions of dollars to WPI and to NEI Center initiatives so we could find answers to bring quality of life to our entire community of suffering. Unfortunately, our organization has a very small budget. We don't charge membership, nor we actively go after funding from the patient community and when we do we do it modestly.

We are a small organization that does great local, state and national initiatives that are successful by all standards within the budget and within the parameters of our scope and level of influence. WE have consistently supported WPI not only through our web sites, through social media and when we go calling on our government officials on Capitol Hill. To imply otherwise is incorrect. To write inaccuracies about PANDORA denotes a hidden agenda that you as a patient advocate must question. It is the honorable thing to do. We have always had an open policy. We answer questions from everyone. I am on Facebook. How much more accessible can I be as a representative of PANDORA? Yet, it would be impossible for me to spend hours and nights on forums chatting away with everyone, as much as I would like to.

Personally, as a patient advocate I donate money to WPI every month several times, through many of my personal friends who like me raise money for WPI through their Birthdays or other ways.

The add that MCWPA created has been instrumental in getting the message towards the general public, not just within our community of suffering that biomedical research on the "virus" that is lurking in our bodies and possibly affecting 20 millions AMERICANS is key. WPI (Annette) provided constructive input on the ad as well. We had the ad reviewed by many across the divide and with the input from the patients a decision was made. There were no hidden agendas, no egos, no controversies. Even before the ad was published, MCWPA also received a letter from Annette Whittemore thanking us for this amazing grass roots efforts. I was personally told by Annette and by Judy that they sincerely appreciated the ad and they knew it would create awareness. The press release MCWPA sent out had a quote from Annette. We simply did not think we needed to add more information with the public in such a fanfare manner, because simply put, we thought you and others would realize that the collaboration has been and it is continuing with WPI.

As far as you mentioning the issues you may have with the CAA. I am not a representative of the CAA. I cannot speak for them. All concerns about the CAA need to be sent to them, not to PANDORA. As far as PANDORA, our organizational structure is younger, bolder and progressive. And as such, we have taken issues like the plight of the Baldwin Family which was quite public and we rallied other orgs to support it too. We did because one patient advocate Pat Fero, spoke to me and successfully explained to our organization the need for us to assume such leadership role and we did it to the best of our ability.

Another good example of being engaged with our patient community: PANDORA wrote a strong letter to the American Red Cross national, state and local leadership. When they did not respond, we went public with it, posted on their web site and facebook pages. In two days they responded with a statement. They realized that it was not only a concern of a few patients and or individuals. They realized that organizations were behind these individuals too. We supported patient advocates on Facebook regarding this issue as well. Ask Keith Baker how I kept him abreast of what we were doing. In the process we supported Rivka's one woman videos too. Together we got results! All of us working toward the common goal.

Another good example of walking across the great divide: Our petition to the CDC, . Ten organizations signed off on this letter as well as other independent patient advocates.

I haven't read Khaly's or Heidi's take on what I wrote, I cannot respond to that. I suppose sooner or later I am going to have to take the time to read it and eventually respond and then again maybe not. Because at the end of the day, we all need to move forward with the greater picture, instead of being stuck with the minutia.

With this said, I also want to assure you that I have great respect for what they do and what they represent.

If you read the blog post, again, you will see that I say we should be angry, Very angry, but we should direct this anger towards the policies in this case of the U.S.government, the country where I live, and question their lack of compassion for an entire community of suffering for the past 3 and half decades. I don't want to waste my time arguing with anyone else within our community about things that I cannot change. I want to concentrate on the things that I can change effectively. I hope you can respect this point of view.

From what I have seen and by the amount of e-mails I am receiving there is strong support for what I wrote. Which reinforces the fact that this is not an ego thing. It is a concern that many have in our community.

You should know, that it was one of the most difficult things for me to do, because I knew that some would not take it well. I stated that in the blog. I was fully aware that it was not going to be well received by a few in our community. This is not a competition for me. I am not claiming I hold the truth, but you cannot ignore the fact that many do appreciate and embrace the UNITY concept, and are working together and they are not spending time fracturing a community which is fragile in more ways than one.

So, you have my ears, and I do look forward to your sharing on what you are doing as an individual and what we can to support you on your efforts to move our mutual agenda. I hope I answered all of your concerns. This is the reality. Rage against a fellow patient advocate, and or a beloved physician and researcher is destructive and counterproductive. We must all take a breather and pond on this for a while.

Thank you for all that you do.
Marly

Marly takes issue with Mindy's blog post, "We are not crumbs" on CFS Central HERE. Apparently, it is wrong to question the motives of some people. An excellent response to Marly's points is made by Khaly in "Rules of Engagement" on CFS Untied HERE. The points made by Khaly are further expanded by Heidi in "Sacred Bovine" in CFS Chronicles HERE.

We are being talked down to and told less than the truth. In these days of internet communication between communities, this is not acceptable, nor is it wise. Our 'leaders' need to show a bit more humility.

The main point of contention between the independent advocates and the members of CAA, PANDORA and MCPWA is the latters' lack of support for WPI funding. Many people feel that supporting the WPI is key to progress, and that they will again change the game, as they did in October 09, but they need and should have the support of the patient advocacy organizations.

The independent advocates are making a difference to Retrovirology, PLoSONE, TWIV, the list goes on. We have ongoing initiatives for funding the WPI. We help and support individuals with ME/CFS. We deserve more respect. PANDORA needs to listen.

 

reply to Garcia

Hi Garcia,
Since I wrote what you quoted, i think it is important to respond to your concern. My take is that I cannot change the past. I can only learn about it and ensure the same mistakes cannot be made on my "watch" meaning as a patient advocate and representative of PANDORA, I will measure every step with great caution, humility and humbleness. As a patient advocate there is much to be done and with the knowledge I have accumulated for these past 12 years as a vocal and present patient advocate, I will work and collaborate with you and others to move a progressive and effective agenda that will change our quality of life.

The CDC has much to do to restore our trust and they need to be held accountable. There are some sign that are indicating in that direction. I am with you 100%.
Have you signed this petition already? It was initiated by PANDORA and signed off by 10 organizations as well as "independent patient advocates".

Please go over what we asked and tell me if you if don't agree with any of the points. Your input is appreciated.
Marly

This is a bizarre statement to make, given the context of the history of ME/CFS. Have you not read Osler's Web??? It is full of organizations that have failed us, chief amongst them the CDC. I would also add the CAA to that list. Of course supporters of the CAA are free to disagree.

 

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?

 

Originally Posted by PANDORA





It is also heartbreaking to see within our patient advocacy community, that mutual respect, courtesy and civility is once again lacking and the anonymity of the internet allows this kind of behavior go unpunished and seldom refuted. The tone found in many of the forums across our community are once again obnoxious, hurtful, demeaning, and counter-productive. When are we going to realize that this internal bullying approach is wrong? It is said to say that I can tell you is that this approach has been in place for decades too and the results are the same: A community divided leading to a weakened community as well. What is wrong with this picture?

Like many in our patient advocacy organizations, our board has been proactively advocating, lobbying and assisting financially families and individual patients on a personal level and through PANDORA. Often we do not share these successful results due to confidentiality and privacy issues. How can any one of us truly measure some of the efforts organizations do on patients behalf? One way is by sharing your experience and knowledge of any organization you support. Express your appreciation not just for one organization but for many TODAY!

Let me be clear, I am not advocating preventing someone from expressing what he or she feesl, I am only expressing concern over the delivery of the message.The reality is that until someone walks in someone else shoes, (by the way the name of PANDORAs official walkathon is WalkInMyShoes) one cannot 100% express that he or she is the absolute holder of the truth. It works both ways! It is also accepted by reasonable people that patients who diminish one organization over another are doing a disservice to the overall cause. As a patient I take umbrage on these types of approaches. As a patient I have to stand up and question ones motives.

There is no other diplomatic way to state what I am posting here. I know that I am going to probably get hate mail. I will have to deal with it. I also know that for each hateful e-mail, I will get 10 stating otherwise. I just hope I will not get death threats as some of the perceived enemies of our community including a controversial researcher has received when inflammatory writings by a few hit the forums and the internet.

As one very wise woman Tammy Saltzman (a S. Florida life coach) recently quoted another very wise woman- Margaret Chase Smith, Every human being is entitled to courtesy and consideration. Constructive criticism is not only to be expected but sought. Therefore I welcome your input but I will also exercise my personal right to not post replies, which will damage the fabric and the strength of our overall community.

I appreciate your taking the time to read this blog post. Thank you for all that you do.

Marly Silverman, Founder, P.A.N.D.O.R.A

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:

I haven't read Khaly's or Heidi's take on what I wrote, I cannot respond to that. I suppose sooner or later I am going to have to take the time to read it and eventually respond and then again maybe not. Because at the end of the day, we all need to move forward with the greater picture, instead of being stuck with the minutia.

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.

 

Marly takes issue with Mindy's blog post, "We are not crumbs" on CFS Central HERE. Apparently, it is wrong to question the motives of some people. An excellent response to Marly's points is made by Khaly in "Rules of Engagement" on CFS Untied HERE. The points made by Khaly are further expanded by Heidi in "Sacred Bovine" in CFS Chronicles HERE.

We are being talked down to and told less than the truth. In these days of internet communication between communities, this is not acceptable, nor is it wise. Our 'leaders' need to show a bit more humility.

The main point of contention between the independent advocates and the members of CAA, PANDORA and MCPWA is the latters' lack of support for WPI funding. Many people feel that supporting the WPI is key to progress, and that they will again change the game, as they did in October 09, but they need and should have the support of the patient advocacy organizations.
.

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.

 

This is a bizarre statement to make, given the context of the history of ME/CFS. Have you not read Osler's Web??? It is full of organizations that have failed us, chief amongst them the CDC. I would also add the CAA to that list. Of course supporters of the CAA are free to disagree.

Garcia, she is surely not talking about the CDC or NIH or ORWH or any federal organization. Marly has advocated long and hard for better representation in that area.