Well-Come!

Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).

Wednesday, February 9, 2011

TIME TO MAKE A DIFFERENCE TOGETHER

"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

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 fiancé, loss of a 6 -income 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, 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 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…” 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 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.  

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 questions 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 feels, 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. 

14 comments:

vw said...

Marly you are so right, the bickering has got to stop, I went to bed last night wretched after reading sniping comments on mindy's blog. It makes me so sad. Whether it's on someone's blog or a forum, wherever, attacking each other is not on. We are exhausted enough & have a big enough fight on our hands without all of the arguing. We are going to lose brilliant people who create awareness by repulsing them with the negativity & emotional stress the bickering creates.
I am a fan of mindy's blog, I took inspiration from some of the act up methods, made me stop & think, do I condone turning backs on dr klimas, no I do not. But perhaps mindy just wanted us to be cautious. I don't know I can't speak for anyone else.
I thank you for writing this, I needed to hear this today. And I really hope no one starts arguing on here either. X

agentforchange said...

Thank you VW. I could not have said it better. I am a fan of Mindy's blog too and I sincerely appreciate her invaluable work. But I believe that she was simply misinformed and since I had the personal insight on the study in question it was easier to explain my concerns in a very professional and respectful manner. The goal here is not to attack Mindy but simply to bring to light other issues that she has missed. Her intentions remain honorable.
Marly

Michelle said...

I clearly respect and appreciate Marly for all that she has done for us especially through P.A.N.D.OR.A. She has got to be the hardest working sick person I know.

I still agree with Mindy's simple assertion that "I’m not out to offend anybody. This isn’t personal; this is business. HIV/AIDS patients got drug therapy because of ACT UP. Period. ME/CFS patients got no treatment because they didn’t ACT UP. Period.

I know patients are working hard to effect change, but it's not happening. Einstein's definition of insanity is doing the same thing over and over and expecting a different result.

What I'm trying to get across is that to change things, ME/CFS patients have to target the government and the media the way the ACT UP people did. The current methods aren't working. You can't argue with success, and the ACT UP people did go after the drug companies, the advertisers, Fauci, etc., and that's why they got results."

And some of the key excerpts from AIDS activist Larry Kramer’s 2007 speech, “We are not crumbs. We must not accept crumbs.” It highlights the warrior tactics ACT UP used to usher in effective government cooperation and drug treatments. One thing that struck me is Kramer’s belief that if you want justice, fairness has to be tossed out the window.

“Our days of being democratic to a flaw at those endless meetings must cease,” Kramer said. “It has been a painful lesson to learn but democracy does not protect us. Unity does.”

I agree with Marly that we are much too busy finger pointing at each other. I also feel we have far too many grass roots campaigns making all of our effort very scattered and diffused. It is way past time for ME/CFS patients to become organized warriors and therein lays the problem. I have only been sick for five years but noticed almost immediately the lack of unity that is needed to get anything accomplished.

One of the earlier comments said "the ME community needs to be solidified....we are too fragmented. Divided we are conquered, united we stand." So our dilemma is how to organize? How to have one clear, concise and unified voice so the powers that be hear us?

In my opinion, if we want government funding for XMRV research, we need to go after any publication that continues to print stories and perpetuate the misinformation claiming XMRV is not the cause of chronic fatigue syndrome.

The one most recently published in Retrovirology dated 12/20/2010 reports “cell samples from patients in earlier studies were contaminated with the virus, known as XMRV, which is found in the DNA of mice. This suggests the patients were not infected with XMRV and it could not have triggered their illness, the scientists said.”

We can spend the next 25 years doing the same thing and getting the same results.

But is that what any of us really want?

The Resistance said...

Incredibly well written Marly. This post has come after I was repeatedly hounded on a forum whilst trying to get some campaign points across.

I agree entirely, the bickering and in house fighting has to end but sadly it appears there are some who thrive on it. Surely we should be united for the greater good and end result which we all want: to get well. I personally try to keep out of the bickering and stay focused on my ideas and my campaigns.

Yes things within the community are fractured, but at the same time we have some great advocacy partners working for the cause, the MCPWA, the Time for Action team, Action Now, PANDORA plus various European advocacy teams. People are being more creative and having a voice for the first time in a long time. Yes we still have a long way to go but by putting all our energies into advocating and pushing for change, we will make it – together.

I have always been an admirer of Dr Klimas’ resolve to help the patient and her drive to study the immunological markers of M.E/CFS.
Her involvement in a CBT study does not in my eyes mean she is joining ranks with Simon Wessely but it can be safe to say that a lot of people will not see it like that.

I realise the CDC policies are not great, but things across the pond in the UK are bad. Really bad. People have lost hope and faith in any outcomes advocacy may achieve.
White’s PACE trial is out anytime soon and our version, similar to the CDC guidelines are to be reviewed, likely in White’s favour. Our model of CBT is based upon the fact that we, as M.E/CFS sufferers are feeling ill because we are deconditioned, frightened to exercise because we are entrenched in our abnormal illness beliefs. Our CBT courses hand out leaflets with the words “no evidence of disease” emblazed across the top in bold print. We are told there is no pathological disease in our bodies and our minds are the only thing that can help us. Sick children as young as 7 are forced to do the Lightening Process through Great Ormond Street Hospital and stand against walls for set periods of time.

There is no help and support that I have seen – help and support I would much welcome.

This is not the model of CBT Klimas would force on anybody – I 100% believe that. The fact that her clinic is furthering Jonathan Kerr’s genomic research and doing immunological studies as we speak gives me hope. Don’t turn your backs on Nancy guys.

Lets unite for the cause and get some change a going here!

Jennie Spotila said...

Thank you for this blog post, Marly. I agree. Negativity directed at each other only hurts us, it does not strengthen us.

Anonymous said...

The ME/CFS community has a right to be angry. We have been ignored, demeaned, isolated, disbelieved, and much more.
Our anger should be used to move our cause forward. Our anger needs to be used constructively and not divisively.
We will not agree with everything being done within the community. If we want ME/CFS to be accorded respect by the “outside world”, we should model respect for each other within the ME/CFS community.
We SHOULD however, work together to improve awareness, to get appropriate research funding, to get effective treatments.
There’s a lot that needs to be done. Let’s work together to ensure that what NEEDS to be done, IS done.
United we stand, divided we fall.

Pat Mayer said...

Marly, I couldn't agree with you more.
First, having been with you in that original "Smart Energy" CBT study was incredibly helpful for those of us in that group. I believe that it helped us, not really because of the CBT methods, but because of the bonds we formed with each other and the support we felt from each other. I also know that Dr. Klimas had that study published to help our position, not to hurt us.
I think that there is a tendency among people who are already tired and frustrated to try and blame someone else. We all need to remember that for us to feel better or stronger, we don't have to take someone else down. If someone has a position or a suggestion on how they think things should be, there is no reason to have to point out someone else's weaknesses in order to make that point.
We do need to come together and focus our efforts. We need to remember that our community in particular, because of our limited energy and ability to be seen, needs help from the healthy world.
I think that our efforts need to be more focused, maybe taking on one thing at a time so that we can get everyone available to do that one thing so it is more effective.
I know how much you do behind the scenes of PANDORA. You are not one to constantly toot your own horn. I can say that with your own limited energy, you have picked me up and taken me to doctor's appointments and support groups. I know that you spend hours on the phone talking to people and trying to help them navigate their way through this devastating illness. I know that you are always looking for new ways to further our cause many times at your own expense,financially, physically and emotionally. For those things and many, many more, I thank you from the bottom of my heart. You know that I will support you and whatever you do and do it with pleasure. With love and gratitude, Pat Mayer

Cort said...

That is basically mission statement for the CFS Community for me. It covers virtually every base of the complicated issues facing us as a community. It's not easy to unify when so many issues are unsettled but if this small isolated community wants to be effective -we must turn from bitteriness and anger to productive action. Somehow we've got to get to the place where we as community get a bigger rise from supporting each than from tearing each other down. Many portions of the letter struck home but this in particular hit the issue right between the eyes for 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."

Basically we must learn how to keep our eye on the ball.

Julia Rachel said...

As I lie in bed, just having major leg surgery 2 days ago, I stare at my leg with extreme sadness. Because a soldier donated body parts, I now have the strength of his/her tendons in my leg. This young soldier died fighting for our country, yet had the heart of the fight to donate to others; should he/she die. When a fight needs to happen, when a war needs to be won; the only way it can be WON is by Unity and with passion from the heart for a cause one believes in. Wars are never won with anger. It takes strategy, skill, leadership and UNITY. As I look down at my leg, I am not sad about the loss of a soldier loosing life while fighting for freedom and beliefs: I am sad and horrified at the comments made against Dr. Nancy Klimas. Dr. Klimas has done more for our Military in moving forward on GWI/AIDS and Stealth viruses and infections than any doctor/scientist to date. Dr. Klimas, I commend you for your studies and your work. I understand that all avenues of science must be explored in the name of both Hypothesis, Theory & Observation for the goal of both scientific and medical truth. Godspeed. Julia Rachel.

Anonymous said...

you wrote:
"...that mutual respect, courtesy and civility is once again lacking and the anonymity of the internet allows this kind of behavior go unpunished ..."

I agree that civility and courtesty, etc, are good things and an ideal worth striving for. But I wonder: just how would you go about PUNISHING someone for behavior that YOU don't like?

Justin said...

I agree with some of this and disagree with other parts.

I think Klimas is great. I really wish she wouldn't make some of the 'absent-minded professor' statements and actions, like calling ME "chronic fatigue". Things like that really harm us. Overall though, Marly is right, imo, Klimas has done so much for us. She could have just stayed on the AIDS research gravy train where she is very successful and her life would be a lot easier. Thanks Prof. Klimas!

Here is Khaly's (cfs untied) blog post relating to this one. It's 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"!

Regarding CAA at least, I really disagree with your post. They need to be 'called out' on some of their actions and inaction.

agentforchange said...

I want to thank you all - each one for you, for taking the time to leave well expressed comments. The points that all of you make are inspirational, give me hope and encouragement that I am not alone as a patient, as a human being and as advocate, in requiring a tone of civility, respect and courtesy in all of our interactions across our overall NEIDs community. To drive home that we will do everything in our power, to embrace solidarity as a group and as a community of suffering allowing us to be once for all: Invisible no More!

Thank you for all that you do.

warmheart said...

Thank you Marly for your bravery in speaking up. And yes, unfortunately these days we do have to call your actions, brave.

To speak up against the vitriol that is spewed as easily as a breath exhaled by some, does indeed leave one open for attack. I have personally experienced it. It is absolutely exhausting and futile.

Many of us have been victims of these attacks from patients or groups of patients. I agree Mindy is an excellent advocate and I support her blog but I'm sure she will feel bad about the Nancy Klimas comment in light of the facts you presented on the study she referenced on CBT.

Recently another of our well respected bloggers made the same mistake in saying personal things that could slander the reputation of some who have been at the forefront of helping and treating patients for over 25yrs. She reacted responsibly by retracting the blog when she realized the mistake even though there were things in her blog that were valid points. I admire her for taking that action. We cannot always be right but when we learn we are wrong we can detract with dignity.

I support all the organizations that are trying to help our cause. We don't have to agree on everything but neither do we need to be so 'highschool' in our behavior toward one another. As you stated for every mistake there have been positive things and yet no one wants to give credit for that.

It makes me sad when I see anyone working hard get personally attacked. This is what mean teenage kids do. Are we not more grown up than that? Why should we revert to childish and slanderous behavior so that we may feel like a loyal warrior in the fight for recognition and funding of ME/CFS?

TMHJR said...

Marly is the most selfless advocate I have ever met. And Dr. Nancy Klimas is a true Heroine in our movement.
None of us are above criticism. but this attack was based on false information and the bloggers who made these nasty comments should retract them, imho.