Time for the Big Talk. How's the CAA doing?

[Dreambirdie]

Tina and Mezombie--

I think that Sock It To Me banners are going to be a fun project for us--less stressful and crazymaking than some of the hard core politics and lobbying involving government agencies. (My hats off to all of you involved in THAT!) Who knows how far we can go with the Socks... but knowing us we will find a way to go farther than we thought we could!

I'm hoping Teej's video will be a hit on youtube. I know she's in process with that. And maybe we can make another video about the making of the Sock Banners, once we get that going.

I wrote a song a few months ago about CFS, which I am still too tired to record, but in the future I hope to get that up on youtube as well.

I think we can apply what skills and talents we have, whenever we have the energy to do so. And hopefully we can SUPPORT each other in the BIG process of bringing attention to this nasty disease.

We are all in this together. We all want to be well.

 

[oerganix]

This is my take on advocacy in CFS.

Last year I created a group on this forum that was designed to take the CDC's program on CFS down at the CFSAC meeting. I did everything that I believed the CFIDS Association was not doing. I used deliberately provocative language. I emphasized how important the goal was and what a golden opportunity we had. The CDC was about to present a draft of its five-year plan. If we could show up in force to get some media attention perhaps we could really get their attention.. We knew that ME/CFS professionals were going to be there and testify - we just needed the patients. I presented this - as it was explained to me - as a once in a decade opportunity to make a difference in the CDC's program.

I sent an invitation to everyone that subscribes to the newsletter - about 3500 people. I sent an invitation to everybody on the forums. I put a big ad on the front of my website.

I got 48 people. After that I pretty much stopped blaming the CFIDS Association for their lack of success at advocacy. I was looking back at old Chronicle that dated back to the time of the CDC scandal. It was right during the Congressional hearings on the subject. The CAA was able to get about 50 people to their lobby day that year.

It's not them or just them - its us as well! We have a pitiful record on advocacy. Dr. Peterson has talked about it in very blunt terms and its true.

Blaming the victim isn't going to wash.

The fact that many of us are disabled and impoverished accounts for a lot of that, and you know that, I'm sure. My personal fact regarding this: after getting nothing in return for my donations and my activities for so many years, I stopped doing anything. I didn't have internet at home, had to drive 12 miles to the public library, with a time slot pre-appointed, to use the internet. Until the XMRV news came out, I was totally into just accepting this illness and trying to live the best quality of life a disabled, impoverished, no-energy person could.

Because of XMRV, I found Phoenix Rising. It is the best forum I've ever encountered for this illness and I thank the Tao for it and for you, and yes, for XMRV research from WPI. I didn't know CFSAC existed. And having read up on its history, I wasn't missing much, as I found that their recommendations were never responded to by those who should have been listening. Even if I had known of your call for patients to testify at CFSAC, I wouldn't have been able to do anything more than send a written testimony. Now that I know of its existance, and that it has Wanda Jones instead of some uncaring GOBSATT at its head, I will provide written testimony next time, if that possibility is offered. As far as I could tell, all the slots for patient testimony were filled anyway.

I certainly won't be able to do any more, for any organization, than what I can do on the internet. It's my only way of contributing. I have pared my lifestyle down so much, in order to live on less than $800/month, than I have no "disposable" income. Every month I have to decide what to do without so that I can have something else I need. I haven't bought any new clothes in over 2 years and when I do, it will be at the second hand store. I live on rice and beans mostly. So, in order to be inspired to give up something else, I need to have a reasonable expectation that it will be of some benefit, if not to me, to someone else with ME/CFS.

So, when I saw that article supporting GET/CBT on CAA, and the puzzling response by Dr Vernon to the last two European studies, I really felt let down by that organization. I still don't know if they don't understand the politics and fraud behind the psych lobby, or if they have some hidden agenda that supports the CDC/Wesseley theories. Unless and until they come out unambiguously on the politics, I will not be able to trust that they represent me in any way.

You, Cort, saying: Well they have Dan Peterson on there, so that balances Peter White.....this does not compute.

That Dr Vernon responded well to the first 'failure to find' study doesn't 'average out' the poor response on the last two.

For me, this doesn't qualify as ADVOCACY for us.

(As for your contention that brain scans could not be paid for, for the public awareness campaign, I say, why not? Since there is "no test and no treatment" for ME/CFS, it could not be considered a medical expense, right? Just a different kind of photograph, of a different part of the sick persons in question. I'd like some thinking out of the box, for a change. What if, after the exhibit went out, CDC complained about the type of photos/brain scans? Maybe then we'd get some scandal worth reporting. I'd like to see them explain why faces tell us more about CFS than brain scans do.)

 

[Roy S]

"I got 48 people."
Cort, are you saying that 48 people came just because of you?


oerganix, I think you made some excellent points.

 

[jspotila]

Thank you, Tina, for your thoughtful post (#565). I think you articulated many of the issues surrounding advocacy work, and I agree that "opposing" sides are usually not very far apart.

You and others have touched on one of the big barriers we have in CFS advocacy. People are too sick to show up, and/or have such limited resources (because they are so sick) that they cannot travel to an event. I participated in marches (back in the day) and you need thousands and thousands of people to make a blip on the radar. And much of the awareness raising for other illnesses, like the breast cancer campaigns, are backed by huge corporate money. Autism Speaks grew because a tv executive had a grandson with autism, and he used his connections and resources to put a big campaign together.

The CFS community has a problem mustering big numbers, either corporate money or people-wise. So we either need a way to muster those numbers or a way around these obstacles. And what do we do in the meantime?

 

[flex]

Cort

I can understand your disappointment at only getting a turnout of 48 after contacting a number of thousand people for advocacy events. However its not realistic to expect people to turn up from all corners of the globe for events that even healthy people with disposable incomes would find difficult to attend. In all reality you will most likely only get people from a very close radius to the event, be they well enough and solvent enough to attend.

I will be attending the Invest in ME event in London in May, but that is because it is only 30 miles form my doorstep. Even that is going to be a mammoth task that is taking weeks for me to plan every detail - not to mention the financial costs involved. Implying we are our own worst enemy for not physically advocating for ourselves is more than a little bit unfair as most of us go beyond what we can do.

This is why so many of us are so distressed at Dr Vernons stance on the two latest European studies:

1) she is fit and well
2) she is supposed to have the subject knowledge
3) she is supposed to advocate for us
4) she is paid to do so
5) she spent years in the CDC whilst damage was being done to us therefore should demonstrate a forthright desire to reverse the damage
6) she is missing glaring opportunities to expose the psych lobby in the media
7) her speaking out would carry more weight than thousands of patients in a single statement
8) she is supposed to represent us in ways we cannot represent ourselves

If somebody is paid to act on our behalf they should do so. The overwhelming majority of people here and elsewhere have taken this stance to her actions. I'm sick of hearing that the science will settle this eventually. It wont if our advocacy groups don't point out the difference between real science and politically driven "science".

Dr Vernon could have come out after the Dutch study and said "this study is of no value to advancing the understanding of the neuro immune disease ME, as it used outdated criteria which at best has never been recognised as offering value anywhere in the world". She chose not to. NOT GOOD ENOUGH!!

The XMRV issue could be finished before its even properly investigated if we allow such schoolboy errors to go unnoticed and unchallenged.
Nobody in the establishment wants the Status Quo to change because they have nothing to gain and everything to lose. I simply don't agree with the approach "leave it to the scientists".

If the CDC think they can get of the hook by citing a number of duff European studies they will damn well try. It would also help them if they had one of their own on the inside of the CAA, who stood alongside Reeves for years with his corrupt and dubious practices. The CDC will have one eye on the politics and one on the science but ultimately it will be them who decide which "science" will take the driving seat. Just as they have done with the fake MMR science and corrupt practices. They will act in their own best interests, and they will have a number of plans on the table.

 

[Roy S]

Jennie,

Are you going to do the traditional Lobby Day around the May 12 Awareness Day this year?

 

[justinreilly]

Cort


This is why so many of us are so distressed at Dr Vernons stance on the two latest European studies:

1) she is fit and well
2) she is supposed to have the subject knowledge
3) she is supposed to advocate for us
4) she is paid to do so
5) she spent years in the CDC whilst damage was being done to us therefore should demonstrate a forthright desire to reverse the damage
6) she is missing glaring opportunities to expose the psych lobby in the media
7) her speaking out would carry more weight than thousands of patients in a single statement
8) she is supposed to represent us in ways we cannot represent ourselves

If somebody is paid to act on our behalf they should do so. The overwhelming majority of people here and elsewhere have taken this stance to her actions. I'm sick of hearing that the science will settle this eventually. It wont if our advocacy groups don't point out the difference between real science and politically driven "science".

Dr Vernon could have come out after the Dutch study and said "this study is of no value to advancing the understanding of the neuro immune disease ME, as it used outdated criteria which at best has never been recognised as offering value anywhere in the world". She chose not to. NOT GOOD ENOUGH!!

The XMRV issue could be finished before its even properly investigated if we allow such schoolboy errors to go unnoticed and unchallenged.
Nobody in the establishment wants the Status Quo to change because they have nothing to gain and everything to lose. I simply don't agree with the approach "leave it to the scientists".

Well said, flex.

 

[jspotila]

Jennie,

Are you going to do the traditional Lobby Day around the May 12 Awareness Day this year?

The Association is not sponsoring a physical Lobby Day in May this year because the appropriations cycle will be over and done with by then. This is why a small group held two days of meetings at the beginning of the month - to get the appropriations language to Congress people before the close of the cycle.

For the past two years, the Association has hosted the virtual Lobby Day coordinating messages to federal offices. In our experience, this has a far better turn out that the physical Lobby Day - 75 people for in-person vs. close to 10 times that for virtual Lobby Day. As has been noted, few patients are able to travel to Washington and lobby in person. I will report back on the details of what is planned this year.

 

[Dolphin]

"I got 48 people."
Cort, are you saying that 48 people came just because of you?

48 people joined an internet discussion group/forum to plan for the event in various ways. Like Cort, I thought more people would join. There were plenty of things to discuss even if one wasn't attending e.g. some of us shared written testimony.

I certainly can understand people not making it to Washington. But I think seeing these sorts of numbers joining an internet forum (i.e. low energy) should remind people that public rallies are unlikely to be massive.

 

[usedtobeperkytina]

Jennifer, we look to CAA to tell us what can be done in the mean time. The particular limitations of CFS calls for ingenuity. Obama became president by using the Internet and speaking well. Surely, with 1 million to 4 million Americans sick, we can do something that will work within our particular limitations. Is there no way to tap into the many in L.A. who got this in the 1980s? If Autism and other illnesses can do this, we can too.

"And much of the awareness raising for other illnesses, like the breast cancer campaigns, are backed by huge corporate money. Autism Speaks grew because a tv executive had a grandson with autism, and he used his connections and resources to put a big campaign together."

I agree. So let's try to do the same or something similar. I am in no way recommending marches in Washington. That is not appropriate. In fact, asking us to travel to Washington is not realistic. But, most of us do leave the house occasionally during a week and most of us are on the Internet. But we need a leader with a good idea that is appropriate for us.

If we don't have that leadership, then we are all doing something different and none of it is working. There is the blue ribbon, how's that going on getting public awareness? Oh, sure, we all are proud to see it on each other's Facebook page.

A strong leader with unique idea that will draw attention from the public.

I simply do not agree that lobbying Congress will work. It has been done for over 20 years, folks. Each new study was justification, yet, where is the announcement of spending on research? The Congressmen are not listening. But maybe they will when a T.V. reporter puts a microphone in front of their mouth and asks them, "Erectile dysfunction gets _________ for research and this illness that causes 25% of patients to be disabled gets only ___________. Can you explain why?"

The CFSAC has for five years called for centers of excellence. Good news, we have two. But, they did not come from government even though the government's own appointees recommended it.

Although I feel we need a strong leader to create a unique awareness campaign, I will support CAA's requests for us to do whatever they think is best, even if it is writing letters to deaf politicians. I can't complain about the division if the effort is not exactly what I think should be done. I think united effort, whatever the effort is, will have more success than the division.

Tina

 

[usedtobeperkytina]

Well, that is frustrating. I Googled "Sock it to me banners CFs" and could not find any information of what you are referring to. I don't know anything about it.

Additional thought, I don't think it is fair to ask Vernon to be an advocate. I think she was hired to oversee research funded by CAA. So she is there to inform, give her expertise in which studies are to be done, and be expert on what studies mean.

Kim McCleary is the main advocate.

Tina

 

[usedtobeperkytina]

I

I have made a personal commitment to myself that any call to participate in any kind of public awareness I will participate in.

Don't we have somewhere here where e-mails were being collected for call to actions? I think I signed up for it.

Tina

 

[oerganix]

48 people joined an internet discussion group/forum to plan for the event in various ways. Like Cort, I thought more people would join. There were plenty of things to discuss even if one wasn't attending e.g. some of us shared written testimony.

I certainly can understand people not making it to Washington. But I think seeing these sorts of numbers joining an internet forum (i.e. low energy) should remind people that public rallies are unlikely to be massive.

I did not NOT join the internet forum from lack of energy. I simply didn't know about it. I suggest that at this point in time, such a forum would attract more interest and more members. XMRV has brought some of us "out of the woodwork" of just accepting that nothing is ever going to be done about this illness, so why try.

 

[Cort]

I suggest that at this point in time, such a forum would attract more interest and more members. XMRV has brought some of us "out of the woodwork" of just accepting that nothing is ever going to be done about this illness, so why try.

I think you're absolutely right. XMRV has definitely energized the community - there's more potential now for advocacy and the Forum is about double the size it was back then. I'm not suggesting that nothing is never going to be done about this illness at all. That's why I get so involved in these discussions about the CFIDS Association because, whatever other problems they have, they are trying to do some major things about this illness and few other groups are.

 

[Dolphin]

I did not NOT join the internet forum from lack of energy. I simply didn't know about it.

You may not have known about it but as Cort described (e.g. writing to the 3500 people on his list, etc), lots of others did know about it.

I didn't say people didn't join because of low energy, I said it was a low energy activity - getting somebody to go the a rally in Washington is a much bigger commitment than joining an internet forum.

 

[Cort]

With all due respect, Cort, many, many of us are simply too sick to participate in CFSAC meetings or the CAA's lobby days.

I have done both in the past and suffered a huge relapse afterwards. I live alone and have no one to take care of me, a situation shared by many.

I realize that and I appreciate that you tried and had such negative aftereffects. We have the most difficult time of probably any disease advocating. Certainly it's frustrating on many levels - its frustrating to you, I'm sure is frustrating to the CFIDS Association, and its frustrating to me. It's a difficult situation.

I even wonder if maybe there aren't so many CFS patients as we think. The statistics suggest about 200,000 people have been diagnosed with CFS in the US. But here with are - I believe in the biggest CFS Forum on the internet - with about 1,500 people. I have wondered for years where is everybody? It could be that the size of the community is really much smaller than we think.

I was at one Lobby Day in Wash DC - an hour and a half away from the Big Apple - and I think there was ONE person from New York. How could only one person show up for the biggest city in the country which is right next door? I was just bowled over by that; that really stuck with me.

I've heard several leaders in the community also state that CFS has never really gotten the support from the parents. One guy was in the non-profit field before he came down with CFS and he stated that the parents of other people with diseases played a huge and vital role in advocating for them. They were healthy, they had resources and of course they had their perspective talents that they brought to support organizations. While, of course, some parents have contributed mightily in general that has not happened with CFS. Its a puzzle.

 

[Cort]

"I got 48 people."
Cort, are you saying that 48 people came just because of you?

What a nice angle Roy! I guess I should have phrased it '48 people responded to the campaign'. In any case I think they responded to the idea of making a difference rather than to me. I'm sure some people didn't respond because my name was on it.

 

[Dolphin]

I realize that and I appreciate that you tried and had such negative aftereffects. We have the most difficult time of probably any disease advocating. Certainly it's frustrating on many levels - its frustrating to you, I'm sure is frustrating to the CFIDS Association, and its frustrating to me. It's a difficult situation.

I even wonder if maybe there aren't so many CFS patients as we think. The statistics suggest about 200,000 people have been diagnosed with CFS in the US. But here with are - I believe in the biggest CFS Forum on the internet - with about 1,500 people. I have wondered for years where is everybody? It could be that the size of the community is really much smaller than we think.

I was at one Lobby Day in Wash DC - an hour and a half away from the Big Apple - and I think there was ONE person from New York. How could only one person show up for the biggest city in the country which is right next door? I was just bowled over by that; that really stuck with me.

I've heard several leaders in the community also state that CFS has never really gotten the support from the parents. One guy was in the non-profit field before he came down with CFS and he stated that the parents of other people with diseases played a huge and vital role in advocating for them. They were healthy, they had resources and of course they had their perspective talents that they brought to support organizations. While, of course, some parents have contributed mightily in general that has not happened with CFS. Its a puzzle.

I think you are right based on what I've seen on other numbers.

I think it's unlikely that anytime soon a five figure amount of people in the US would do any activity.

So many people don't get involved, financially or otherwise.

 

[starryeyes]

justin wrote: There needs to be a name change now (to ME or ME/CFIDS) and the only way this will happen is if CAA leads by calling the disease ME or ME/CFIDS.

I completely agree with that. After all, ME/CFS is the "new" official name for CFS in the U.S. I don't feel the CAA represents the disease I have. The CAA represents people who have idiopathic fatigue and who respond well to exercise and CBT.

 

[starryeyes]

Um, they actually do spend a lot of time lobbying for $ from Congress. Before they got into research, the CAA was primarily an advocacy organization.

I understand the ire here, and the CBT/GET stuff pisses me off too. But this is different stuff. But the CAA is really small potatoes as far as patient organizations go. They just don't have the money that the super-powerful health and special interest lobbying organizations do. If you go to www.charitynavigator.org and type in various illlnesses, you'll see that many have several patient organizations, and some have serious cash. The American Diabetes Association has a $225 million budget, for example.

A friend of mine is a former policy analyst with HHS and now works in non profit, and would never work for a place like the CAA that is so shoestring. You have to have a good budget to get the kind of lobby to get big $$ in Congress, and the CAA simply doesn't have the funding base to really do the kind of things we'd want them to.

Well they have less money because many of us refuse to support them as they are right now. Why isn't the CAA hollering about how we need more government funding in their newsletters and online? How much does that cost them?