Unity in itself is not good or bad. If activists are unified behind a bad strategy then diversity would be better and should be encouraged.
Some activists who analyze what activists do are called “negative” by some in the ME, ( the Medically Abusive Definition ) CFS, and Lyme community. This kind of analysis is not negative.
When you see something which does not work you state it and analyze it. The process is called “thinking”. Claiming it is “negative” dumbs everything down. It puts up a block to further analysis. It turns activism into nothing more than follow the leader. Activism becomes stagnant, and no one learns from their own and others experience. We need to think, analyze, and learn to adapt to get better at what we do. Different ideas are awesome. Anyone who claims different ideas are “negative” are not engaged in analytical thinking. They do not learn from history and therefore they do not adapt. If they understood this they would not use a trivial term such as “negative”
If you are wrongly criticised in this way, remember, you are the thinker.
Those calling you negative are not helping the cause because they represent the status quo. They frown apon new ideas and they keep doing the same things over and over. They do not make things better. They lead others into an infinite circle which goes nowhere and only creates the illusion of progress. Instead of following them, you can be like the ones in the video. You can be the one who can help everyone succeed because you can be the rebel.
- There is a status quo in activism. The status quo adopts a negative stance on new and better ideas so there is no forward progress.
- Activists need to analyze what they do to see if they can do better. There are decades of history to learn from. Activists need to look at the history so they do not keep doing the same things over and over and getting nowhere.
- There is a lot of activist theory out there. Most activist groups do very little of what the experts recommend.
- An activist is not a pacifist. Activists need to challenge the status quo within the community by presenting the better argument.
The CDC wants to project an image which says “we listen”, “we will work with you”, “we care”. They create events which patient advocates can attend and speak. The advocates give advice and the CDC can take the advice or not. History provides ample evidence that they rarely and probably never adopt advocate recommendations. These events are more about the appearance of wanting to learn rather than an actual opportunity to learn. Attending these events comes at a cost. When an advocate goes and speaks to authorities at their event, they boost the CDCs image. If the advocates accomplish something meaningful then that’s great. They deserve credit. Remember though, what comes out of a meeting is only the first step. They only succeed if the CDC ultimately includes that advice in any final work which is rarely the case. If the advice is not taken after the CDC receives it then nothing good happened, but something bad did happen. The CDC got the PR they wanted and patients get nothing. It helped the CDC but not us. Patients have no vote at the table, no guarantee of print space, and no authority. They have the power. It is the illusion of representation. It benefits the CDC when advocates attend their events. A benefit for us is remote. Image is huge to the CDC. They want to keep building that false image. They don’t want the public to know how they have mistreated so many of us. They have millions of skeletons in their closet and they don’t want them revealed. It is harder to reveal them if patients help create a false positive image by attending these events.
The CDC wants to maintain a shiny lie on an ugly truth. They have engaged in widespread medical abuse of patients for decades. Thirty years abusing ME patients. Thirty years abusing CFS patients. Thirty years abusing Lyme disease patients. Thirty years abusing Morgellons patients. Twenty years abusing Gulf War patients and more. We have decades of shared abuse, shared pain, and shared losses. Patients with these disease labels have heard for decades, “All you need is a psychiatrist.” “We won’t treat you for this.” “We won’t cover you for that.” “You don’t get disability for that.” Thirty years and it hasn’t changed. Doctors won’t treat the patients for these diseases but doctors will mistreat and bully them. The system will make a fortune off the patients fading health which can last decades. Your doctors words will convince some of your friends and family that you are crazy when you actually have a severely disabling physical disease. The patients life slowly falls apart as their medical condition worsens due to the deliberate non-treatment. Many patients lose their job then their home. Many eventually lose their friends and families who expect them to quit faking being sick. Eventually the patient will become an empty shell of who they once were. This goes on until the patients health has been totally bled dry and no more indirect treatments can be done and then they can be left alone to die. They become invisible to the world. Doctors won’t see you anymore. Family won’t see you anymore. Friends won’t see you anymore. No one is there to see what is left of you. Then you die, but you really died years ago. That is our medical system. People don’t know this is happening because many die totally alone and the medical industry is good at keeping this off mass media as well. PR efforts will keep the industries false image intact. PR efforts like meetings with advocates to speak to them. They couldn’t possibly engage in widespread abuse if they “listen” to patient advocates. The advocate would certainly state what it is like and they would correct it, but they never do. They must want to listen because they invited them to speak, but it is all really a PR stunt. That is why they were invited. These meetings convey the false message that doctors listen, doctors work with the patient, the system cares. The truth is that these events are just a charade. A routine performance for appearance sake. Some in the abused patient community work to try and create something good out of it but it doesn’t happen. In fact, it never happens. The advocates do not learn from the past. Instead, these patient advocates helped the CDC and not the patients. It is like pulling teeth every time for crumbs and get nothing. It is time for these advocates to stop because history shows they are not helping the patients.
Patients can not reason with these people. These people don’t care about the lives of the patients because there are billions of dollars to be made off each of these diseases. Most people do not know this but the CDC owns patents and can make money from them. Advocates who go to their events make them look like reasonable people. It is time for advocates to stop playing the CDC’s PR game. You are putting a human face on a monster which helps hide what they do. You are helping them. You are hurting the patients.
So how do patients help patients instead of helping the CDC?
Let the world outside the abused patient community know why you don’t want to attend. Advocacy groups and individuals can do this. The public needs to hear that you are done with the CDC charade. Let the public know it has been going on for 30 years now. CFS/CFIDS, ME, Lyme, GWI, Fibro, Morgellons, each abused patient group is doing the same things in their CDC defined disease label. Patients move forward by turning their backs to the CDC. Do you realize The CDC loves for us to devote our energies speaking to them. They want us to work “with” them because you are actually working for them. If you are speaking to them, you are not educating the public about them. You need to talk to the public not the very people doing us harm. Don’t waste your energy talking to them. Talking to an abuser only interested in money will not work. There is nothing you can tell them that they already don’t know anyway. Faux meetings with patients to “understand” the disease shouldn’t even be necessary. Do you realize these types of meetings allows them to spin and distort and lie even more. Research is the place to find accurate conclusions. Good science would reveal anything we could tell them. They ignore the good science which agrees with what the patients know. It is power not science that rules the medical industry and power keeps the lies in place.
Dismantling the CDC’s false positive image is a very powerful goal. Much of their power is based on the false belief that they use good science. The CDC performs and defends junk science for profit. Your friends and family would be more likely to know you are sick if they understood the system.
Here are things to consider…
- Write, message, talk to anyone but the CDC. Let the CDC be the last to know.
- Occupy USDOJ on Facebook – Protest for all abused medical patient groups.
- Taking it to Congress and the courtrooms because the law has power over the medical industry.
Imagine if all the wasted energy directed towards the CDC was directed at something beneficial?