Building an advocacy plan in response to Unger's appointment

[Marty]

Medfeb, you have done what many have not done; your homework. Good job! As you have seen, there is a 20+ year history of advocacy that has failed, and to see patients today spending so much effort on writing letters and trying to reason with the CDC is heartbreaking. Really interesting for today is where the movement was 12 years ago, meeting with the CDC after they stole our research funds: http://www.co-cure.org/audits1.htm . I know this thread is old, but I hope people will take a look at it and let it completely change their thinking to devise new actions that will have consequences to the people at CDC. Medfeb, I believe you have the smarts and experience that the movement so desperately needs to look at history and change to completely new methods of advocacy. You can't imagine how much we need you.

 

[WillowJ]

As far as i know, Elaine DeFreitas was not able to reproduce her findings in a blinded study. Nevertheless it would be interesting to see investigation into her findings.

What study was this? As far as I know, the CDC couldn't/wouldn't replicate her findings. However, DeFreitas' fundings were pulled which put a stop to her work, but I am aware of no evidence that she herself couldn't replicate her findings.

I asked Mary Schweitzer about this and she said that as far as she knows, DeFreitas "had no trouble replicating her work" (although retroviruses can obviously be difficult). On the other hand, claiming such work can't be replicated "was a standard tactic by Bill Reeves to keep people from actually looking at the work."

 

[eric_s]

I think i read it here on PR, some months ago. Can't tell you where, unfortunately.

 

[WillowJ]

I read something to this effect here, too, but I don't believe it.

 

[eric_s]

But how could we know? Are there any sources that will show without doubt what really happened back then? And the WPI said very early on XMRV is not the DeFreitas virus. Plus if she really found something, how come in the years since then, nobody has found that virus again?
If you find anything, please post it.

 

[WillowJ]

If there was, as you said, a double-blind study or some other work in which she failed to replicate her results, it would have been published.

What we do know is that

1) The CDC did one of their attempts at replication without following her actual protocol, and failed to find anything significant. Nothing unusual there.

2) Elaine's funding was pulled and her work was publicly criticized.

3) We don't have any evidence for any failed attempt of DeFreitas in replicating her own work.

4) We do know Reeves & co have a habit of saying "it can't be replicated" when this is an absolutely false claim. NK cells, RNase-L, you name it. CDC says it can't be replicated. Any decent scientist, and any layperson who knows how to use pubmed and can tell the difference between Fukuda and Oxford, knows these have been replicated.

5) As I said, Mary Schweitzer, who would likely know if it were otherwise, said as far as she knows, there was no issue with DeFreitas replicating her own work.

Innocent until proven guilty, common sense, and the above list, all say we should assume DeFreitas could replicate her own work unless we can prove otherwise. So I say, we don't say she couldn't unless we can prove that. Why would we want to tear her down?

Just because of XMRV? Let's just say maybe there are subsets, or maybe we have more advanced science techniques now, or maybe there are both retroviruses (or maybe hers was endogenous; I'm told there are endogenous-exogenous retroviral associations), or maybe something else we haven't thought of. I'm a (baccalaureate) cell biologist, not a retrovirologist.

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1350473

Here is the pattern. I take the train to Washington, I come to the meetings, I give my five minutes of testimony, and I pass out a written version. At first we were allowed more than five minutes, which was a kindness to people who have trouble speaking. We were even allowed to ask questions of the committee. But since 2003, it’s been five minutes only, and no questions to the committee from the gallery. Some of my previous testimony can be found on my website here:
http://www.cfids-me.org/marys/essays.html#cfscc.

I come and speak about having the Rnase-L Factor, and suggest that the test be made available. Bill Reeves of CDC would say, as soon as I was through, “It can’t be replicated.” That’s simply not true, but I didn’t have a microphone to be able to respond. In an NIH funded study, 98 of 100 patients from the Incline Village cluster outbreak tested positive for the 37kDa Rnase-L (it should weigh 80 kDa). 0f 100 patients with fibromyalgia, 100 with major melancholic depression, and 100 normals, only 2-3 percent tested positive in each of those three groups. That’s a pretty significant result.

Then the samples were sent, blinded, to two French researchers studying the same thing using a different method. They correctly identified each sample. I would call that replication. Two countries, two methods, same sample. 100 CFS patients and 300 controls. That’s replicated. CDC just didn’t replicate it themselves, so it doesn’t count.

(read the rest of her testimony; it's really good!)

Note: I have now seen an article about the entire course of the experiment and verification attempts from beginning to end and including a statement that Elaine couldn't replicate her work in a CDC-chosen cohort. The article is unattributed and cites no sources. It seems to me from a quick scan of the article that bilateral communication issues, lack of persistence/dedication on the part of the CDC, and subgroup issues were the problem, according to the article.

 

[eric_s]

I will read it later, now i have to leave this room (i'm a away from home) and move to another place. There i will stay for longer and have more time.
For me some things don't really add up, but it's impossible for me to find out what really happened, i'm afraid.
I mean why did pharma companies not pick it up? Would they let anyone steal such an opportunity from them? Or why wasn't it replicated in another country? Or why is nobody doing it now? I guess the WPI could do it with the information that's available from Elaine DeFreitas's papers.

I'm not saying she was not right, i just don't know how i could come to a more or less certain conclusion, because it's in the past and i don't understand biology.

I still believe our biggest chance is to move forward, make sure there is a lot of research done and so we will find out what CFS is and how it can be treated. I don't know if there is any other form of proving or disproving Elaine DeFreitas's work than trying to replicate it now. It would be interesting if a good lab we trust does that sooner or later. Right now, XMRV is higher up on my list, but it would be interesting to see what they find, if they try to replicate her work.

 

[Marty]

Back to the thread topic about what Medfeb can do about advocacy:

Twenty years ago when there were support groups everywhere, we only saw the people who could physically get there. On these forums we see the multitude of people who are even more desperately affected. What is most startling is that I don't see the old leaders, and when I searched, I found that all but 3 of my friends from 20 years ago have died, and one of those 3 is in a nursing home. But look at the link I put on your thread yesterday ( http://www.co-cure.org/audits1.htm ) ; 12 years ago we knew people were dying, but CDC wouldn't acknowledge it or any of the other issues we are still fighting.

Medfeb, you came to the forums (as did I) when there was more activity than ever in the movement. December was an incredible month, and it wore many of us out. What is astounding is to see so many good advocacy ideas, but there is no one coherent enough to carry them out. The world is missing out on the evidence that these people are not lazy and crazy at all; all the effort is going toward the choir. I have to assume that the posters are the writers in the group; there must be many more lurkers willing to help if they knew what to do.

So my thoughts for you are:
1. People are too sick to physically protest and too cognitively impaired to carry through targeted actions;
2. Many right now are busy chasing the virus story and interest will fade as they find out that science takes years, especially with so much to overcome;
3. There has never been a healthy support contingent, and I can't really blame them. As long as the CDC says we are crazy and families can't see evidence that we are sick, and their family doctors agree with the CDC, and "chronic fatigue syndrome" certainly sounds like we are crazy and lazy, they have to wonder, and doubt does not make advocates. And as with any chronic illness, pretty soon it becomes the patient's pattern and people stop talking about it. Family and friends disappear, and I can't blame them.
4. We have to find a way to make the people at the CDC so uncomfortable that they will at least stop harming us; they must stop the psychobabble and take down the website. Those who are inclined to believe in government action can haul them before Congress again, but history does not indicate that anything significant will happen. We are getting "words" from the people at NIH, but I warn to always disbelieve words and only believe actions. We have been there before.
5. Looking at our long 20+ years of really good advocacy, being nice and reasonable has never worked, like people trying to talk their way out of war. Eventually, they must take up arms and force the issue. This we have not tried yet, unlike all the other successful movements. Our people are still wasting time writing letters and worse yet, emails, which just get deleted, I'm sure.

I wish I could give a positive idea; the most positive idea I can give is to learn from our past and take into consideration that we cannot afford to waste either energy or money. There are many good ideas floated on these forums, and people coming from many viewpoints. I'm guessing that we don't need large numbers to agree on any project. Any individual that has an idea, and can convince a few others to work together for a short time, can make an impact. What we need is coordination, so that these small projects can build into a large result. CAA has let us down, and IACFS/ME has really let us down. We have no simple diagnostic criteria and no public website for basic information. Somehow we have to pull this fragmentation together, or we will continue to bang our heads against the wall. I honestly don't know what to do, but I know that what we do has to create consequences that CDC cannot ignore.

 

[usedtobeperkytina]

The

The MCWPA is putting out information that is making government agencies uncomfortable.

Also, PANDORA will come out with announcement in a couple of days concerning what you can do concerning CDC research program.

Tina

 

[cigana]

Hi Medfeb,

Thanks for getting involved in this, it si really appreciated. I would like to add a suggestion regarding your point 3 - how do we get the media involved?

I think the best way is to found a journalist's prize. The money required for this would be relatively small (on the order of a thousand $), but could go a very long way if it gets a handful of the press on our side. The effect could snowball. It's possible some supplement manufacturers may be interested in funding the prize - this would guarantee many people visited their site (in order to vote for their favourite articles). I have begun trying to do something similar in the UK.

Cheers,

Mark

 

[Marty]

Medfeb, Cigana had a great idea: http://forums.aboutmecfs.org/showthread.php?9708-A-central-mailing-list-for-petitions . It's a weekly petition vote or activity announcement sent to a subscribed email list that patients could easily and quickly participate in. They would not have to spend hours searching various forums and blogs (after which I am too exhausted to contribute to the action). It coordinates any patients or groups for targeted actions on a weekly and sustained basis, without requiring a national consensus, and includes worldwide participation. I think this is really exciting; it's the first kernel I've seen that brings all the various viewpoints and groups together to do something besides talk to each other.

 

[eric_s]

Hi Medfeb,

Thanks for getting involved in this, it si really appreciated. I would like to add a suggestion regarding your point 3 - how do we get the media involved?

I think the best way is to found a journalist's prize. The money required for this would be relatively small (on the order of a thousand $), but could go a very long way if it gets a handful of the press on our side. The effect could snowball. It's possible some supplement manufacturers may be interested in funding the prize - this would guarantee many people visited their site (in order to vote for their favourite articles). I have begun trying to do something similar in the UK.

Cheers,

Mark

I like this idea. Sounds like it could increase the quantity and quality of media coverage, with relatively small money from our side. I don't know much about media, but this seems like a smart thing.

 

[muffin]

The 6 December 2010 half page Washington Post advertisement has had impact on the Federal government health orgs and also on the UK people who you see are running terrified.
Journalists have to do more research yet before they pounce on something. However, having said that - we have had several radio interviews and a number of newspaper interviews that our MCWPA people have given.

That Washington Post AD and the Press Release were a very DEADLY SHOT ACROSS THE BOW to the Federal government health organizations. They now see that we have a very united and powerful group of people worldwide - that are mad as hell and are going very very public. That scares them more than anything. We made the Retrovirus and the nation's blood supply front and center for the world to see. I would bet my house that the agency heads got non-stop phone calls from other government people, journalists (who they would play down the seriousness of this disease and retrovirus to), and the public. I would also bet my house that there were a number of frantic conference calls among the heads as to what they need to do to make us happy. They now know we will attack again publicly - and we will. Soon. They SAW what we could and did do PUBLICLY. They are scared and things will change. That AD was a massive punch in the face to the Federal government and they know it. The public DID see it as my sister and friends all saw the Post AD. My husband's boss had the AD open when he went back to talk business in DC. So the AD has had impact. Wait a bit longer and the scared and lazy journalists will jump in after they see that others are willing to take the jump. The news people all sit back and wait to see who will jump first and then they jump. The AD's claims, backed up by the government's own work (FDA/NIH/NCI) were convincing. We used their own studies and data against them to get our point across. And we did get our message across - loud and clear. So give the journalists time to research, watch, and they will be jumping on this story and pushing it out. We did come out of no where with a major and terrifying claim of an "HIV-LIKE VIRUS" - that is HUGE. It is also very scary to jump on and run with - but they will. Mark my words.

 

[Marty]

They now know we will attack again publicly...They SAW what we could and did do PUBLICLY. .

Congratulations to MCWPA for attacking! That fits my definition of doing something to cause a consequence. I wish people could understand that long letters only wear out the patient and don't cause any consequence, as 20 years of letter-writing proves. This is the first of a new era of advocacy where our little energy is put to much better use than previously. Our new goal is how to get the biggest effect for the littlest effort. We know now that this is not an information campaign; CDC et al have heard it all. This is a war of political will, and those who don't attack get shot and die.

Carry on!

 

[Dolphin]

Medfeb, Cigana had a great idea: http://forums.aboutmecfs.org/showthread.php?9708-A-central-mailing-list-for-petitions . It's a weekly petition vote or activity announcement sent to a subscribed email list that patients could easily and quickly participate in. They would not have to spend hours searching various forums and blogs (after which I am too exhausted to contribute to the action). It coordinates any patients or groups for targeted actions on a weekly and sustained basis, without requiring a national consensus, and includes worldwide participation. I think this is really exciting; it's the first kernel I've seen that brings all the various viewpoints and groups together to do something besides talk to each other.

I think this could be done by a PWME/PWC. Medfab is healthy so may be able to do other sorts of ventures that many of us couldn't do, or not on our own.

 

[medfeb]

Marty, Cigana and Muffin

Thanks for the messages -wonderful ideas! I love the ideas of one central list for petitions, the journalist's and anything else that can increase not only the media's but also the public's attention. I also really like Marty's comments about making it easier to access basic information - as a 'new to CFS' person, I still am daunted with trying to get a handle on this disease when there are so many sites, many with old information, others with poor quality information. Everything is so fragmented

I read an thought-provoking blog about advocacy by Chris Maupin -
http://www.cfidsreport.com/Articles/advocacyruts/integrationadvocacy.htm

I especially like his comments about:

- the necessity of overcoming public apathy if you want to have any impact in the political realm and the lessons from AIDS
- how hard it is for a regular person to understand what the disease is all about which has the net affect of exacerbating public apathy - it takes so much energy to work through that fragmentation that I mentioned above that I am afraid most people wont bother
- the need to try new approaches to advocacy

THoughts on what he has to say? I recognize that some of it might be controversial

 

[*GG*]

Medfeb, Cigana had a great idea: http://forums.aboutmecfs.org/showthread.php?9708-A-central-mailing-list-for-petitions . It's a weekly petition vote or activity announcement sent to a subscribed email list that patients could easily and quickly participate in. They would not have to spend hours searching various forums and blogs (after which I am too exhausted to contribute to the action). It coordinates any patients or groups for targeted actions on a weekly and sustained basis, without requiring a national consensus, and includes worldwide participation. I think this is really exciting; it's the first kernel I've seen that brings all the various viewpoints and groups together to do something besides talk to each other.

Thanks for all the contributions to this thread. Yes, I think a simple email should be sent. I know I get some from XMRV on Facebook and a few other listing(s), but nothing recently?

GG

 

[usedtobeperkytina]

We have petition

PANDORA has petition planned. Should be out in 24 hours. We are going to set it up to go to Unger's bosses.

Tina

 

[taniaaust1]

Hi medfed,

Its great to see a "healthy" wanting to help us .

Im one of those suffering burnout right now from all the workd done when all the virus stuff come out and that (contacting reporters, contacting CDC etc).

The CDC said they would ring me and discuss things (thou im in Australia.. I hold them responsible some for the Aussie situation as my doctors go and look at the CDC site and the info there) but I burnt out and never ended up following things throu.
(I wanted others to be there who have CFS/ME and was going to put it on broadcast the convo to them between my tough questions and the CDC.. I'd hoped to later put the transcript onto the CFS/ME societies website). I worked so hard but then just got too sick to follow up on the phone call the CDC offered to do to me.

Be aware that it may be very hard to get many CFS/ME organisations to work together well due to "differences" of opiniion between the organisations. Even many CFS/ME patients are against CFIDS Association of America for various reasons (hasnt always seemed to be serious in supporting patients). The differences of opinions are so huge eg what really is CFS/ME (they couldnt even agree on what definition should be used to define and should be being pushed).

There was even big dispute at this website with a big breakaway group formed due to it.

Anyway.. glad to see you at this site.


I strongly recommend to you to familiarise yourself with the CFS/ME history and goings on by reading Hillary Johnson's book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Edpidemic. Without that knowledge, you wont really know what you are dealing with.

Secondly I suggest after finding out about each and their differences, start working with one of the CFS/ME groups... I personally think PANDORA and also the ME/CFS Worldwide patient alliance are good ones (they both havent been going all that long but already really achieving things). You'll get best guideance on what is needed if you work with an existing group. They all really need healthy ones working with them as we all suffer so much burn out.

 

[taniaaust1]

Can a mod delete this.. I ended up double posting.