Article: One Agent For Change: I Cannot Imagine Our Community Without... by Marly Sil
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Beatifully stated Marly. Thank you for reminding us how much we need the whole community and kindness towards each other.
As a caregiver I am constantly amazed at the energy so many patients put into advocacy for us all, day after day, week after week. No doubt often at high cost. Thank you to everyone.
And a personal thank you Marly, for touching me today, when I really needed it "or a caregiver wondering whether you will be strong enough to be there for your loved one, another single day." You are the first person who has expressed it so eloquently. And yes, another day, and then another.
As a caregiver I am constantly amazed at the energy so many patients put into advocacy for us all, day after day, week after week. No doubt often at high cost. Thank you to everyone.
And a personal thank you Marly, for touching me today, when I really needed it "or a caregiver wondering whether you will be strong enough to be there for your loved one, another single day." You are the first person who has expressed it so eloquently. And yes, another day, and then another.
I think frustration and anger are natural consequences of our situation vis a vis the fed government and elsewhere. I was told, from someone who was there, that the AIDS community functioned in a similar fashion early on - disagreements in how to proceed on the advocacy front were sometimes met with hostility and division. That's understandable - but it uses up precious energy and alienates people who very well, I think, would be friends if they could just sit down with each other and talk.
Well, I am totally baffled, and once again, must plead ignorance. Among the generalities in Marly's blog, there is, I am certain, a surreptitious meaning.
After two readings, this is what I take away: someone, somewhere must be acting in rage against a fellow patient advocate.
It's very nice that Marly singled out various deserving individuals and supporting friends and family. She distinguishes between anger and rage which is always a good reminder to those of us who often teeter between the two when it comes to lost decades with this disease and the s-l-o-w-n-e-s-s with which our government has responded.
But there is an undercurrent of reproachment in her writing. Is anyone else out there who is as clueless as I am? Or who would admit it?
P.S. I had the pleasure of meeting Marly at the CFSAC meeting. She earned my respect immediately. Sorry I didn't make it to your photo shoot, Marley; I was glued to my seat at the time watching the committee tangle with each other in anger.
After two readings, this is what I take away: someone, somewhere must be acting in rage against a fellow patient advocate.
It's very nice that Marly singled out various deserving individuals and supporting friends and family. She distinguishes between anger and rage which is always a good reminder to those of us who often teeter between the two when it comes to lost decades with this disease and the s-l-o-w-n-e-s-s with which our government has responded.
But there is an undercurrent of reproachment in her writing. Is anyone else out there who is as clueless as I am? Or who would admit it?
P.S. I had the pleasure of meeting Marly at the CFSAC meeting. She earned my respect immediately. Sorry I didn't make it to your photo shoot, Marley; I was glued to my seat at the time watching the committee tangle with each other in anger.
Well, mine is not going to be a popular post but I am going to make it anyway.
I find the contention that we all have to 'get along nicely' as one enormous community, regardless of very differing views on many matters, and often through gritted teeth, to be somewhat naive and unrealistic.
For example, personally, I *would* like to see a community without McCleary and Vernon because I do not believe that they have delivered any significant 'game changers' for patients in return for the hundreds of thousands of dollars that they earn each year. I find their inclusion in a 'thank you' list alongside Judy an insult to Judy.
I am also irritated by the fact that this note ignores the many hundreds of 'silent workers' who operate outside of the public domain and away from the forums, who seek no thank yous, and who, very often, have more success in influencing change than those who shout about what they are doing. You will never know about them, nor their achievements, because they are too busy to broadcast what they are doing.
We are a disparate community. We have different views and opinions. We have different ways of going about things. This is life. This is human nature. The sooner we learn to accept this and the fact that we will never get along as one big happy family, the sooner we will be able to focus on what really matters: pushing a common agenda and not a common means of delivering that.
I find the contention that we all have to 'get along nicely' as one enormous community, regardless of very differing views on many matters, and often through gritted teeth, to be somewhat naive and unrealistic.
For example, personally, I *would* like to see a community without McCleary and Vernon because I do not believe that they have delivered any significant 'game changers' for patients in return for the hundreds of thousands of dollars that they earn each year. I find their inclusion in a 'thank you' list alongside Judy an insult to Judy.
I am also irritated by the fact that this note ignores the many hundreds of 'silent workers' who operate outside of the public domain and away from the forums, who seek no thank yous, and who, very often, have more success in influencing change than those who shout about what they are doing. You will never know about them, nor their achievements, because they are too busy to broadcast what they are doing.
We are a disparate community. We have different views and opinions. We have different ways of going about things. This is life. This is human nature. The sooner we learn to accept this and the fact that we will never get along as one big happy family, the sooner we will be able to focus on what really matters: pushing a common agenda and not a common means of delivering that.
I don't think we have to get along nicely. I think Marly is talking about a minimum amount of respect and the recognition that everyone, even if they have different ideas about it - is committed to the same basic goal. Dr. Vernon and Kim McCleary earn their way - they are not leaching money from anyone; the CFIDS is propelled entirely by the donations from its members who have the option to stop at any time. Apparently CAA supporters think those two are doing a good enough job to support that organization. The CFIDS Association appears to have weathered the recession in fairly good economic order - you may not like the job they are doing but somebody obviously does....
Dr. Mikovits is the same way....she is paid via donations, what the Whittemore's chip in and the grants she gathers to support the WPI. If any of them stop producing sufficiently - I assume they will be out of a job.
I think the key thing for me is this"
I don't think Marly is saying that this very large group has a 'common means' of delivering or is requiring that they do so - where is that in the post? To my ears, Marly is asking that everyone recognize that we do have a common agenda and spending our energy focusing on THAT.
I think it would be impossible to put everyone in that message and Marly's inability to do so did not retract from her attempt to be very inclusive; a good number of those people I've never heard of...Since Marly doesn't spend alot of time on the Forums, of course, there are many people here that she doesn't know of and that I and others would have added to the list.
Well there is one group here that has made some of it's way taking a considerable amount of money from the CDC. I guess they leached off the CDC then. That's how you weather a recessin Cort? Government grants and Contracts.
CAA only has 2000 or so paying members I would hardly call that a resounding show of support for Kim or the CAA.
They basically are supported by a few big donors and recently no bid contracts from the CDC.
CAA only has 2000 or so paying members I would hardly call that a resounding show of support for Kim or the CAA.
They basically are supported by a few big donors and recently no bid contracts from the CDC.
omegaman, the Association completed both CDC contracts and was never dependent on those contract to stay operational. Information about the contracts and their results can be found on the Association's website www.cfids.org.
Advocating to higher level
As long as the ME/CFS advocacy and research community remains fractured and fragmented, then we will never succeed in raising consciousness of the public and medical community to the needs and desperate circumstances that surround these illnesses.
We can continue to harp on our differences and finger point or we can choose to work together on common goals and efforts that we all agree is for the good of the patient community. It is really a simple choice for me.
After all, we don't have to look very far into history (CFS or otherwise) for a lesson on what the former does to the success of advocacy efforts. We have a tough enough job fighting outside perceptions without fueling internal disagreements.
Mike Munoz
As long as the ME/CFS advocacy and research community remains fractured and fragmented, then we will never succeed in raising consciousness of the public and medical community to the needs and desperate circumstances that surround these illnesses.
We can continue to harp on our differences and finger point or we can choose to work together on common goals and efforts that we all agree is for the good of the patient community. It is really a simple choice for me.
After all, we don't have to look very far into history (CFS or otherwise) for a lesson on what the former does to the success of advocacy efforts. We have a tough enough job fighting outside perceptions without fueling internal disagreements.
Mike Munoz