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Tiime To Make a Difference

PANDORA

PANDORA
Messages
32
"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 Franklyn

Once again I am excited about what is to come in the months ahead in the NeuroEndocrineImmune Disorders (NEIDs) Community. I think this May 12, 2011 Awareness Day will be the best ever!

I am excited with some of the initiatives that are taking shape with the NIH State of the Knowledge of the Science of ME-CFS and a potential future engagement of the CDC with patient advocates in the NEIDs community. It is exciting of the fact that through many initiatives within the NEIDs Community, life-long friendships are being created and that the theme that “now is the time to make a difference together you and I” is coming to fruition. Stay tuned for some future announcement.

As I look at the blogs that are popping up recently, I read one blog post today that prompted me to write this blog post If you can provide input it is appreciated. I believe the topic
requires some new voices in the conversation.

More specifically I would like to address one recent statement found on the amazing blog of “CFS Central” in ref to Dr. Nancy Klimas. Mindy wrote: “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 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. Patients have to stand up for themselves; they can’t depend on anyone else to help, even Nancy Klimas or its own support group, the CFIDS Association of America."

The facts are that the research in question was done almost 11-12 years ago. Unfortunately, it was only recently published in its entirety. It is the only research on CBT that factually states that CBT does not cure CFS-ME. In fact it clearly refutes what Peter White has stated, including one of his recent statement that to "his knowledge there has not been one CBT study that demonstrates he is wrong". This one in fact does!

I speak with great insight and knowledge because I participated in one area of that study. I was among the lucky ones who were part of the 12-week study program within the research study. I was told from the beginning of the study that it would not cure ME-CFS, but it would hopefully help me cope with the day-to-day challenges I was personally experiencing. Among these challenges: the devastating abandonment by a fianc, loss of a 6 -ncome figure, and loss of a successful professional career. These losses are typically the type of losses that the majority of our overall community of suffering often experiences.

I can personally say that from that study, life-long relationships were created, PANDORA was established and a new life as a patient advocate for me took shape in a most profound way. Whether anyone in our community wants to hear this or not, the fact is that this study reinforced and came at a time in my life when I needed.

And NO… I do not t endorse CBT treatments as the kind provided in the United Kingdom, without any other type of medical care. Absolutely not! However, we cannot blankly state that in the proper setting patients with NEIDs should not use every available coping tool they can find.

With this in mind 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 can share with our entire community that without Dr. Klimas’ medical expertise, I would not be writing this blog post on these important issues. I can also say that without Dr. Klimas thousands of patients in Florida and beyond would not have access to Social Security, workman’s comp and private disability benefits. When a judge reads Dr. Klimas’ credentials in a medical report during a disability hearing, he is aware of her spotless credentials. Without the work of Dr. Klimas countless patients would lose hope ending in one of the most painful events to me, when I am told that another patient within our overall community has died by suicide.

I sincerely agree with Mindy in many areas. I personally would like to see a complete wipe out of the mind-set of our health government agencies of ME-CFS and other NEIDs as well. I would like to see $150 million dollars being invested annually on ME-CFS. The same for the other illnesses PANDORA embraces.

I recently stated to some advocate colleagues from other organizations: “The main drive of the letter to the CDC (which Jill Justiss mentioned on Mindy’s blog post) is to change a NATIONAL policy towards ME-CFS. Only through a change in national policy from the bottom up, meaning we get patients and their state leaders, then federal congressional leaders, then cabinet members and then the bureaucrats to do what they are supposed to do, we will yield huge positive results. So here is our take: No more handouts. No more half-efforts. We need to be smarter. We need to collect 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…” BTW, click here for the CDC petition.

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. 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 demonizing 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.

It does not help us either with the fact that the stigma that this community of suffering already endures becomes larger than life, because of such misdirected and destructive behavior.

Yes, Let’s Be Angry! Be very Angry, because angry directed to a greater good creates change. I am all for it! Yet, I do not subscribe to the uncontrolled rage I am witnessing that is quite destructive.

I do not subscribe to the theory that “organizations have failed us”. But I do subscribe to the concept we can do better! I do not subscribe that our patient community should attempt to destroy the core and the foundation of several organizations, which have established through hard work, perseverance and resilience, programs that are beneficial to the overall community. Yet, I do subscribe to the concept that we should ask question and provide constructive criticism.

I also subscribe to the fact that organizations without patient participation, do not thrive. They slowly become obsolete and ineffective. Again, only through sincere and ongoing participation and collaboration we can all win the fight.

Our community organizations’ tasks are monumental. It is a gargantuan struggle finding resources, getting volunteers, raising funds, answering phones, writing newsletters, communicating with officials, visiting disabled patients, bringing food to patients, writing letter on patient’s behalf to Medicaid and insurance companies, and much more. I cannot help but question if any of the individuals in question have really taken the time to visit with a representative of any of the organizations supporting our overall community and to get to know them personally.

I embrace the fact that as organizations we need to get with the times, and we have to be smarter by using social media advocacy and other tools to our advantage. Some of the suggestions as it relates to ACT UP (AIDS) as I have been reading on some of the blogs or forum posts, I dare to say have been replaced, re-evaluated and/or complemented by other much more contemporary approaches.

As someone who is participating not only as an individual and as a representative of an organization – PANDORA, which wears many hats as a local, state, national and international organization, yet with a very small budget, I can state that while within the confines of our mission we have accomplished successful projects. The same can be said for all of the organizations I have interacted supporting our overall community of suffering.

A good example to share of a good and yet “in your face” approach is the “flashmob” display in which I participated at the latest CFSAC meeting. It was a powerful display, yet it was respectful. For patients across the U.S. who saw the video and for patients across the globe it was an awesome event to experience. So why are not patients asking organizations "What can we do to help you to drive our message more effectively?"

Instead, what I am seeing is heartbreaking and exasperating. It is also painful to realize that despite 3 decades later, the CDC is still lending credit to the psychobabble approach. It was this personal realization, which came as a personal anger and also shared by many in our patient community was directed to the positive, leading to the cause-project ME-CFS Worldwide Patient Alliance on Facebook. I am proud to say that PANDORA supports this cause.

How about the grassroots artistic efforts of Sock it 2 ME-CFS? Why are not more patients supporting it in great numbers? Recently the creators of such patient initiative posted that they can no longer continue to do the project and could use assistance. This project is the one that gave every CFSAC member a well-crafted colorful sock pin and created such a buzz during the meeting in DC and at the New Jersey CFS Association Fall Meeting last year.

Why aren't more patients supporting "FAX the AD"? A collaboration among several patient groups on Facebook and organizations?

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 patient’s 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!

For every naysayer complaining of an organization, point to something good these organizations have done. Do not be silent! One does not have to engage in a heated exchange, one can just say what it comes from the heart. At the end of the day the same rights one individual has in order to state a hateful position applies to a kind one too. Why are we so afraid to confront the tone of these voices?

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 PANDORA’s 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 one’s 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.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Didn't think there were any replies allowed by Marly (except on her blog) :

Khaly (cfs untied) has published a response which constitutes the best blog post I've ever read:

http://cfsuntied.com/blog2/2011/02/09/rules-of-engagement/

Extremely insightful. It crystalized for me why I too feel uncomfortable with the calls for 'unity' among ME advocates. Different reasonable perspectives (which mean perspectives grounded in reason, and doesn't imply that the perspectives are moderate or undemanding) should not be ignored or "punished"!


Thanks to Khaly!!
 

akrasia

Senior Member
Messages
215
Time to Acknowledge Difference

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 patient’s 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 PANDORA’s 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 one’s 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.


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.
 

jace

Off the fence
Messages
856
Location
England
Akrasia is absolutely right, IMHO. Funding the WPI is where our money should go. Of course we will carry on talking to our elected representatives, influencing committees, educating and supporting just as we always do. These things can be done with little or no money. It's the work of the WPI research team and clinic that are going to be the game changer. That is where any advocacy cash not needed for internet connections, telephones, stamps and envelopes should go at this point in time. Why doesn't PANDORA ask for donations for the WPI? As a patient community, we really do need to focus on the main chance. Support the WPI!
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I think PANDORA has done a lot of good and been quite innovative. This without taking salaries out of the org, which, not only does a lot of good to get the money where it's desperately needed, but says a lot about those who work for us there.

fwiw: I would like to also see PANDORA support WPI more and take a more aggressive stance with HHS.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
If anyone is implying that WE, the many patients, have to 'unite' with CAA. That's a little backward. CAA should be 'uniting' with US the patients whom they are supposed to be representing.

And, yes, I know that CAA are representing the wishes of some patients- the ones on the board, their donors and Cort are the ones of which I know. But those views they are representing are in the clear minority, imo. And those who feel they are not represented by CAA and that CAA is harming patients with it's lack of a strong stance against our oppressors, clearly feel very strongly about this (including me obviously). Feeling very strongly about something doesn't get you two votes, but it should be taken into consideration by the 'representative' going against those wishes.