Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
For every naysayer complaining of an organization, point to something good these organizations have done.
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?
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.
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 ...
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.....
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.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].
I do not subscribe to the theory that “organizations have failed us”.
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.
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.
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
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.
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.
.
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.