I am posting the entire lawsuit filed against Harvey Whittemore here in this blog for those of you who have not seen it and wish to read it. You can find it here:http://www.rgj.com/assets/pdf/J7184397127.PDF It is a mind boggling read. I found it amazing that companies and individuals can be so rich,(or not) that multiple millions of dollars could be diverted continuously and take so long for it to be found out and addressed.. Perhaps some of these charges are untrue, but for all of them to be untrue would be unrealistic. There is a definite pattern to them. Unfortunately the Whittemore Peterson Institute is said to have been a beneficiary of numerous cases of fraud in this legal filing. Reading it and keeping in mind many other things that have come up in the recent past left me shaking my head in wonderment and quite frankly disgust.
When I think of all the sick patients who donated each month to the WPI, many of them out of their pittance from disability, this whole thing feels very personal, especially in light of the allegations in the lawsuit. I feel for patients and the disappointments this sort of thing brings. For all of you who put your heart and soul, hopes and dreams into the WPI as the only real hope, please know that they are not the only hope. They never were!
There are excellent ME/CFS clinics in the United States. (Not so for most of the world unfortunately) You can get the same care from them you would have traveling to the WPI. There are many wonderful doctors & researchers who have been studying & treating ME/CFS patients, and who will continue to study & treat patients. They will be sharing information and patterns they find in the patient community with each other. This will speed up progress. This was one of the promises the WPI had put before us. It was a good one. And it is happening with or without the WPI now. This is good news for patients who can get to a center and be treated by reputable ME/CFS physicians like Dr. Nancy Klimas in Florida, Dr. Enlander in New York, Dr. Bateman in Utah, Dr. Montoya in California, & Dr. Lapp along with Dr. Black in North Carolina. These are just a few of the places you can go for better medical treatment of ME/CFS. Unfortunately with this disease you may have to travel to get the best care from a knowledgeable treating physician.
The tide IS changing and we have much reason for hope. Our very own ME/CFS specialists are and will be helping the CDC write the courses medical professionals will take to learn about the disease. They will be involved in affecting the changes that needed to be put into effect a very long time ago. That alone is huge progress. We all want our life back now of course. We want to be well or have treatments that allow us to lead an active life surrounded by those we love. Some of you perhaps desire to once again travel, get back into your career, or get re involved in sports and hobbies that we once passed pleasant hours in. Unfortunately we have to wait for the bigger changes but there is so much new interest in researching the disease one can only be encouraged by that fact. It's a small comfort in our daily life, but it is a positive thing to have forward momentum.
In the meantime, I hope the patient community has learned not to put all it's beliefs, hopes and dreams into one organization. Not to turn anyone into a sort of messiah. I hope people learned that the "us vs them" mentality is a destructive one, usually leading to emotional reactions that only lead to chaos. Patients get to fighting with other patients in these types of scenarios, as happened in the case with the WPI. Many good people had their names and reputations smeared. FOR WHAT?
Anyone who takes an interest in our plight is worthy of our appreciation and there are many who do. I appreciate that the Whittemore's desired to help those with ME/CFS. I do not appreciate some of the methods that were used in trying to attain their goal. I also do not and did not appreciate how they divided our community and came to be viewed as the ONLY ones who patients should really support. If you think back you will see in hindsight that it was when the WPI entered the picture that real infighting began among us. The responsibility for that lies right at our own feet. Hindsight is 20/20. I feel bad for patients. I feel bad for innocent ones in the Whittemore family. And how about Dr. Mikovits, who up till the time of working for the WPI had a record of many years of an excellent research career? She has paid a huge price, one we can but imagine, and one that is not yet close to being over legally or emotionally.
Dr. Mikovits's reputation has suffered the most publicly due to the legal battle with WPI. But there are many who have been working on our behalf who had their names and reputations slandered in the name of that organization. Yet they are still working everyday either lobbying, advocating, researching or treating patients, one at a time, one day at a time. And they have done so with dignity, no bully tactics or rudeness, no divisiveness. That shows true character. It speaks to their truth, though faceless patients, using made up names, on message boards cast shadows on them in their support of the WPI, some so terrible as to paint innocent ones as crooked, liars etc. Thankfully true character rises to the top. It matters not how many people attack it, you are who you are, no matter how long you are accused of not being so. As our mothers told us while growing up, "the truth always comes out". Truth rises to the top because of it's own substantiveness.
There are so many advocates who became much more ill, not from the work they did in advocacy, but from the attacks, infighting and unfair judgements made about them when they didn't support who some deemed as the "right team." Some of these fine people are still laid up long after the WPI's fall from grace. Good, kind people, sick themselves, worked on behalf of the many and ask themselves now, FOR WHAT? That is a real shame and the true cost of the way people behaved. We hurt our own. FOR WHAT?
Ask yourself personally if you contributed to hurting innocent people's reputations or dignity in the fervor for an answer to what causes the disease you have suffered with. If the answer is no, congratulations on escaping the mob mentality that existed. If the answer is yes, then you've learned from all of this and will do better in the future.
What I would love to see is all of us using our time, our hearts and our minds to find ways to build each other up and help those in our midst who need it the most. There are so many ways to encourage others, be it through words, financial help with a bill, some material thing you see they need and happen to have etc. Encouraging others is a powerful thing. It helps people keep going instead of giving up. That's the fight really, to keep going, till medicine can get us to a point where there isn't a day when one or many of us think of giving up on life. Encouragement is a life saving action. We all need it. We should all give it whenever and however we can. If you need ideas on how to help others I'd be happy to point you in a good direction. If you have a good idea and would like help accomplishing it I'd be happy to help you and rally others to help also.
Of course you may feel so exhausted and be so broke that you think there isn't anything you can do to help, but that's not true. The way forward may seem so insurmountable that you don't feel your taking small steps in supporting others would amount to much, and besides you may feel you need encouragement yourself! The best way I know to feel encouraged is to encourage others. I make it a personal goal to encourage one person a day...minimum! I start with myself and work outward. Perhaps you might make this kind of goal or something that is similarly upbuilding. Computers, the Internet, Facebook, and other platforms give us the power to encourage and support one another, even when we are severely ill.
An encouraged patient community is a strong patient community. A patient community that shows appreciation and respect to one another has it's own rewards. One reward would be not having the life sucked out of you from the discouragement of reading personal attacks and seeing divisiveness at an extreme level. Divisiveness where we cannot comfortably talk to one another without fear of reprisals is like a black hole sucking everything in it's path. We don't need that. The disease itself leaves us with so little energy that it must be spent wisely and a negative environment is not conducive to any of our goals. We don't need that!
We do not have to agree on everything. That would be impossible. Actually we could disagree on many issues and keep the peace if we did so respectfully and had conversations that left the other person's dignity in tact. Coming from a place of respect for one another's ideas and feelings is something that should be practiced in all areas of our lives anyhow. Tell me, what's not to like about taking on that kind of perspective? It is an attainable goal to those who are willing to decide that from today forward, this is the way they are going to interact with others. None of us can do it perfectly but when we fail due to a bad day or something just really getting on our last nerve we can simply apologize and try again to be respectful and appreciative of others efforts on a matter. What a refreshing thing it would be then to come on Facebook and talk amongst ourselves in this type of environment! (Keeping in mind not all who speak out in disagreements get personal nor are they trying to attack someone personally. Attacking another person personally is infantile. Pointing out, even strongly why an idea is opposed is not a personal attack and should not be viewed as such. An interchange of differing ideas is beneficial in coming to logical and workable solutions.)
I personally appreciate all of our doctors and their staffs. I appreciate researchers who are working at understanding different aspects of ME/CFS. I appreciate P.A.N.D.O.R.A. who has been working hard for change. I appreciate the MCWPA. The same can be said of all the associations that work to help local patients. I appreciate what the CFIDS Association has accomplished in the research it has funded. I'm looking forward to the announcement that will be coming out shortly about new research efforts to be funded.
Moving forward let's be kinder with our words. Let's be encouraging to one another. Let's show appreciation where it is due. Most of all let's learn some lessons from the past two years. With each person or organization we choose to interact with or support make sure to ask yourself these questions:
What is this going to do FOR us?
What is this going to do TO us?
What fruits are the person or an organization exhibiting, and how are they affecting the patient community as a whole?
Are they worth the cost?
Sometimes we don't know someone we believed in was less than we thought. Time reveals many things but there are always warning signs along the way that start with a whisper and end in a roar. Listen to your gut when you see or hear things that just don't seem right or beneficial. I'll bet many of you had little alarm bells that went off in the last two years as you watched the effects on the patients community
Never should we smite each other over anyone or anything. We're what it's all about! Let's allow nothing to divide and conquer us. Let's try our very best to be respectful in the face of differences, giving each person the same right to state their opinions and feelings and be heard respectfully as we would like others to do with us. This cause we're in, it's about patients, you and me looking for a better and healthier life. We're still here. We still need what we needed two years ago. We will be here for a while so let's make it as pleasant and productive as possible. Help others cope with their situation. If you see someone has a need and you can help them, do so and if you need others to help you help someone ask for the help. Shake off the discouragement and bring on the encouragement. Working together in a dignified manner with some common goals and everyone's input respected, we can accomplish good things. We can walk into each day encouraged, showing appreciation and respect to all who use their precious energy to help us. Together we are STRONG!
