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

[MEKoan]

So, those who are XMRV+, should it pan, will be XAND and everyone else will remain CFS?

It would be nice to assume that, if the bulk of us are XMRV+ which is my assumption at the moment, those who are not would be able to access better diagnostics since a confusing element would be off the table.

But, that is assuming that the presence of XMRV can always be determined. It also assumes that we can be sure that XMRV does not do hit and run damage and cannot disappear from detection in some. If it does hit and run, some patients, especially those treated with anti-virals could, concievably, have viral loads below detectable levels.

I would just hate to see any with ME/CFS, and nothing else, languish as we have for these many decades because we do not have a complete understanding of XMRV and XAND.

I remain,

 

[Katie]

So, those who are XMRV+, should it pan, will be XAND and everyone else will remain CFS?

It would be nice to assume that, if the bulk of us are XMRV+ which is my assumption at the moment, those who are not would be able to access better diagnostics since a confusing element would be off the table.

But, that is assuming that the presence of XMRV can always be determined. It also assumes that we can be sure that XMRV does not do hit and run damage and cannot disappear from detection in some. If it does hit and run, some patients, especially those treated with anti-virals could, concievably, have viral loads below detectable levels.

I would just hate to see any with ME/CFS, and nothing else, languish as we have for these many decades because we do not have a complete understanding of XMRV and XAND.

I remain,

Your penultimate sentence sums up how I feel. I don't know how things will go for XMRV- people, I have a game plan to make sure I don't end up in a CBT/GET clinic and can wait for Dr Kerr's gene expression test, but I fear we'll get the same shoulder shrug we've all had, except this time XMRV will be on the long list of things ruled out. I'm... not optimistic, but then I can't be. The more we know about XMRV the better, some of us may well get tested for it multiple times in the next few years or even a biopsy.

I think I shall join you in a state

 

[Roy S]

working together?

This is a post by Mary Schweitzer Ph.D. reposted in full with permission. I don't recall that this vital subject has come up here. There are several pages on the cfsknowledgecenter on the same subject as this thread in reverse chronological order. This post is a couple pages back.

Cort, about your last post there; all those ideas are new and yours?
Roy

http://cfsknowledgecenter.ning.com/profiles/blogs/cfids-association-what-do-you

Mary wrote "Cort - that's exactly the answer Kim gave me in 1996. It would be too hard; it would be too expensive for the National in Charlotte to start up a whole bunch of locals.

No! That's not what I suggested then and it's not what I'm suggesting now!
Sorry to get emotional, but there it is - the stone wall - the "you can't fix anything" response. "La la la la; I can't hear you."

I never suggested the CFIDS Association of America should "build local groups." I suggested that the CFIDS Association of America needs to work with existing state and regional organizations who themselves are already working with local groups.

The National doesn't generally do that much directly with locals. The National works with the State and Regional associations. The State and Regional organizations work with the locals. You're missing the most important step.

If the CAA responds by saying it would be too difficult to "build" state and regional groups, I'd be back beating my head on the floor again. They're already there.. We already have very good state and regional groups who are already work with local groups. You don't have to create them - in fact, you shouldn't create them. You need to work with them.

What's missing is the outreach - and what's missing is the willingness to let go of power.

Recently the traveling picture show of people with CFS came to a state that has a very well-run, large, longstanding organization. The president of the organization learned the show was in her state when she happened to go to a shopping mall and saw it there - with nobody to answer questions, with nobody to hand out pamphlets. Just a lot of pictures in a vacuum.

She was very frustrated - had she only been given a week's notice she could have had people there manning the show the whole time. She had pamphlets that could have been distributed.

I am presuming the CAA never notified her because (heaven forbid) Kim could not control the outcome if she allowed a state organization to take over some of the burden. And that's why the CAA isn't working.

To repeat:
National <-----> State/Regionals <-----> Locals
By the way - I didn't just pull this out of a hat. When I was a working professor, I had a colleague, a sociology professor at the University of Delaware, who had written a book about how successful NPOs work. I had just been to a national conference in New Orleans where she was the keynote speaker (I had responsibilities there left over from 1994, before my total collapse with the disease). This was 1996. Her speech was (unsurprisingly) about her latest book - she talked about the elements of a successful non-profit in the United States.

I flew from New Orleans to San Francisco, where the AACFS was meeting, with my notes from the talk in my Lands End briefcase, and asked Kim if I could spend a little time talking to her about organizational issues. She was very polite. She listened. And then she said it was impossible.

So here we had free advice - and could get more - from a nationally recognized expert in the organization of NPOs. And the response was ... just like yours. Kim didn't hear a word I was saying.

It's hard enough to live with an invisible disease without also being invisible to the people who speak for you as advocates. And the sad part is it's not necessary.

This is the point where I beg state organizations to come together - happy to come with you - and create a national organization that truly represents the population of patients with ME/CFS in the United States.

It was done before, you know - 1787. And they didn't even have a model to work with.
Mary Schweitzer

 

[Khalyal]

So, those who are XMRV+, should it pan, will be XAND and everyone else will remain CFS?

It would be nice to assume that, if the bulk of us are XMRV+ which is my assumption at the moment, those who are not would be able to access better diagnostics since a confusing element would be off the table.

But, that is assuming that the presence of XMRV can always be determined. It also assumes that we can be sure that XMRV does not do hit and run damage and cannot disappear from detection in some. If it does hit and run, some patients, especially those treated with anti-virals could, concievably, have viral loads below detectable levels.

I would just hate to see any with ME/CFS, and nothing else, languish as we have for these many decades because we do not have a complete understanding of XMRV and XAND.

I remain,

Personally, I would think that after the culling of the XMRV people from CFS, it would be of utmost importance to insist on a complete disbanding of the whole CFS chimera and proper research into what everybody else is ill with.

If nothing else, XMRV shows us that the CDC has been entirely inadequate in either controlling OR preventing.

To me, the primary fight is "undiagnosed illness does not equal psychosis".

 

[Advocate]

To me, the primary fight is "undiagnosed illness does not equal psychosis".

Well said!

 

[fresh_eyes]

Personally, I would think that after the culling of the XMRV people from CFS, it would be of utmost importance to insist on a complete disbanding of the whole CFS chimera and proper research into what everybody else is ill with.

If nothing else, XMRV shows us that the CDC has been entirely inadequate in either controlling OR preventing.

To me, the primary fight is "undiagnosed illness does not equal psychosis".

I agree - very well said, Khaly. That's kind of where I'm trying to go with the CFS OUT movement idea - to start creating leverage now for the non-XMRV+ among us (or, you know, not detectable by current technology) to ride the coattails of XMRV out of the wastebasket of "CFS".

So it's both "CFS out of the closet" and "Let's throw CFS (the wastebasket concept) out".

If we don't start laying the groundwork now, I do think there's a very real danger of the CDC et al framing it as, Turns out *some* of them (us) never had the imaginary disease CFS, they (we) had a real disease, XMRV. It sounds like the CAA is going to wait until after the studies come out to speak up on this. I think by then it will be too late to shift the dialogue onto our terms. IMO, we have to get started.

I also love what you said, Khaly, about undiagnosed illnesses. It would be wonderful if our efforts could result in a different mindset toward all poorly understood diseases. To my mind the "Poorly Understood Illness = Psychosis" model is really a human rights issue, and could be brought up with the WHO, part of whose mission is to advocate for health-related human rights. http://www.who.int/hhr/en/ I think an effort highlighting other diseases once assumed to be psychological, now proven biological, could be very effective (eg MS, Narcolepsy, ulcers...). In fact, talking about it, I'm going to take a stab at that.

Now, the big question remaining for me is, how best to get our message(s) out? We don't have the PR machine that an organization like the CAA has. But then, times have changed, with social media and all. Does anyone have thoughts on how to get our message to the broadest possible audience? Are there local/regional CFS orgs that could band together?

Thoughts?

ps Thanks, y'all. You're an inspiration.

 

[Dolphin]

Things may be different in the US but I think the concept of ME and ME/CFS is still a useful one.

If a reasonable percentage of people who satisfy the Canadian criteria for ME/CFS don't have XMRV-related problems, I still it's a useful concept to keep them (i.e. the XMRV- people) together.

There is an unusual response to exercise in this illness. People need to be told about the dangers of exercise. They won't be if they are just left in no-man's land.

Just my two cents.

 

[fresh_eyes]

You're absolutely right, Tom. Those of us who are XMRV- need to stick together too. The problem is the criteria, which here in the US are so hopelessly muddled...And of course here we don't have the option of the ME designation...

I think I need to clarify my thoughts on this. It's a very complex and confusing issue even for me, and no doubt infinitely more so for the public. That's part of our image problem. I want to figure out a concise way to register both our dissatisfaction with the CFS label as it's been used, our desire to narrow it down to the Canadian definition, AND our unity as a group.

Thoughts?

 

[jspotila]

If we don't start laying the groundwork now, I do think there's a very real danger of the CDC et al framing it as, Turns out *some* of them (us) never had the imaginary disease CFS, they (we) had a real disease, XMRV. It sounds like the CAA is going to wait until after the studies come out to speak up on this.

I respectfully disagree, fresh_eyes, but not with the first statement.

If the XMRV findings are replicated using the best methods, and if a blood test is validated, and if an individual's XMRV status is shown to be indicative of disease severity/state, and if XMRV+ individuals are carved out into a new disease entity, and if there are XMRV- individuals who still manifest disease (like CFS), THEN we have a very difficult and thorny problem. Will people without XMRV but with a CFS-like state be told they are mentally ill, or will scientists keep investigating to determine what they have? That's five ifs. How long will it take for researchers to move through those questions, publishing and replicating results along the way? I don't know.

The CFIDS Association is speaking out about that first "if." We are advocating on the DHHS Blood Safety Task Force, and to researchers (CFS and non-CFS alike), that replication studies must be done using the highest quality methods. We are very concerned about the ramifications about each "if" along the way, and high-quality science is the foundation of each step.

We don't have the PR machine that an organization like the CAA has.

The CAA does not have a PR machine!!! My goodness, I wish we did! We don't even have a single full-time staff member devoted to PR. Communications responsibility is shared among several people, all of whom have multiple other responsibilities as well.

 

[fresh_eyes]

Thanks a lot for your thoughts on this, Jennie. I'm totally open to new info here, and I'm all about dialogue. Could you clarify for me exactly what part you disagree with? It seems we agree on the main point I was trying to convey.

I think from our very unscientific reports on this site, it's pretty clear that there WILL be people with CFS - even classic, Tahoe-cohort-style CFS - who as of now test XMRV-. It does seem important to me to lay the groundwork to respond to this starting ASAP, by changing the playing field of the dialogue, for the reasons I described above.

I personally don't expect the CAA to be able to do everything. A CAA is not an ACT UP - it's a mainstream nonprofit, and as someone who has experience working in the nonprofit world, I know they are generally very conservative (as in cautious - not as in Republican!) organizations.

Do you think it's safe to say the CAA is not going to take the (more risky) pre-emptive stand that many here want?

Might you guys support us if we did it ourselves? (When I say pr machine, I mean stuff like mailing lists, contacts, infrastructure for dissemination of info, etc. - might any of that be made available? Or maybe we could have an endorsement from the CAA?)

And lastly, re the lack of resources - would CAA consider taking on a volunteer media coordinator? I would love that job.

 

[jspotila]

Garble Garble

Thanks a lot for your thoughts on this, Jennie. I'm totally open to new info here, and I'm all about dialogue. Could you clarify for me exactly what part you disagree with? It seems we agree on the main point I was trying to convey.

I'm sorry I was unclear! I meant to disagree with your statement that the Association was waiting until studies are published to speak about the implications of the XMRV+/- issue. I was trying to say that the Association is speaking about it already by addressing the need for replication studies to be conducted in the best way. I'm not sure how we can speak about an effect that is five steps downstream, when the highest priority must be addressing the first "if" of replication studies. Does that make more sense? I do think we agree on the main point!

Do you think it's safe to say the CAA is not going to take the (more risky) pre-emptive stand that many here want? Might you guys support us if we did it ourselves? (When I say pr machine, I mean stuff like mailing lists, contacts, infrastructure for dissemination of info, etc. - might any of that be made available? Or maybe we could have an endorsement from the CAA?)

At the risk of repeating myself from other threads, I think it is important for me to be very very clear. I am here as an individual who also serves on the Association's Board. I'm not here as an official go-between, although I am more than happy to be a conduit of information, questions, feedback, etc. I don't want my statements to be heard as official statements of the Association unless I'm actually making an official statement.

Re-reading that last sentence makes me think I am suffering from "snow brain," but I hope I am making a little sense through all the garble.

And lastly, re the lack of resources - would CAA consider taking on a volunteer media coordinator? I would love that job.

Duly noted! Seriously, though, I am capturing what we've all discussed in this thread and will pass it forward.

 

[fresh_eyes]

@ jspotila: Got it. CAA is focusing on the first next step for now. And you're not really here as a representative of CAA. Glad to have you here, either way.

 

[Khalyal]

If we don't start laying the groundwork now, I do think there's a very real danger of the CDC et al framing it as, Turns out *some* of them (us) never had the imaginary disease CFS, they (we) had a real disease, XMRV. It sounds like the CAA is going to wait until after the studies come out to speak up on this. I think by then it will be too late to shift the dialogue onto our terms. IMO, we have to get started.

.

Yes! That's exactly what I think, too. We need to be pre-emptive about this, I think. Advocacy, IMHO, should already be positioning to meet this challenge.

 

[mvwu]

To me, the primary fight is "undiagnosed illness does not equal psychosis".

Khalyai -- How about, instead: "undiagnosed illness does not equal neurosis."

I think neurosis is what the CDC is pushing -- hypochondria, depression, anxiety neurosis, maybe hysterical conversion.

Not psychosis -- hallucinations, delusions, paranoia, thought disorders.

If I'm wrong, I'm ready to be educated. And appropriately horrified.

 

[Cort]

This

So it's both "CFS out of the closet" and "Let's throw CFS (the wastebasket concept) out".

would be nice but I don't see how you can do it with the non-XMRV folks until something XMRV-like comes along. What CFS is is up in the air in the research community. Until you have a really strong finding - another gotcha moment like XMRV - CFS is going to be a multi-factorial illness - which means to me that many interpretations will be present - and at least within the research community - legitimate. If you want to get rid of the psychological focus that some sections of the research community give this disease you need a really strong physiological finding to peel them away.

The big problem, though, is lack of research and lack of government funding. How are you going to get that gotcha finding when you get miserable funding? Since this disease is multifactorial - you have very little bits of research spread across multiple body systems which is a recipe for agonizingly slow process; ie years of each of our lives just to tie down ONE FINDING. It could easily take five or ten years to make substantial progress on ONE LITTLE issue. Until this disease receives adequate funding it'll continue on and on in this petty pace until we all live out our natural lives. Honestly I expect nothing less.

That's obviously changed -at least for now - for people with XMRV - since the research community has found something in CFS that they actually want to study. If XMRV works out then at least a section of CFS patients are essentially set! They will get the research they need.

But the rest of the community won't. The rest of CFS is complex so they shie away from it; they're not interested in how many people are suffering or what the economic costs are - they couldn't care less; they're interested in the next hot topic.

Since the federal research agencies aren't interested in funding CFS I or making it a hot topic) then our only path is to force them to do so - not an easy task since they are one area of the govt that is somewhat insulated from public pressure. It can be done but it requires strong advocacy efforts - which the CFS community has shown little willingness to get engaged in - so we continue hoping that a lightning strike like XMRV somehow descends from the sky.

 

[Dolphin]

The big problem, though, is lack of research and lack of government funding. How are you going to get that gotcha finding when you get miserable funding? Since this disease is multifactorial - you have very little bits of research spread across multiple body systems which is a recipe for agonizingly slow process; ie years of each of our lives just to tie down ONE FINDING. It could easily take five or ten years to make substantial progress on ONE LITTLE issue. Until this disease receives adequate funding it'll continue on and on in this petty pace until we all live out our natural lives. Honestly I expect nothing less.

That's obviously changed -at least for now - for people with XMRV - since the research community has found something in CFS that they actually want to study. If XMRV works out then at least a section of CFS patients are essentially set! They will get the research they need.

But the rest of the community won't. The rest of CFS is complex so they shie away from it; they're not interested in how many people are suffering or what the economic costs are - they couldn't care less; they're interested in the next hot topic.

Since the federal research agencies aren't interested in funding CFS I or making it a hot topic) then our only path is to force them to do so - not an easy task since they are one area of the govt that is somewhat insulated from public pressure. It can be done but it requires strong advocacy efforts - which the CFS community has shown little willingness to get engaged in - so we continue hoping that a lightning strike like XMRV somehow descends from the sky.

Good points.

We can also keep funding smaller studies to maintain or increase the amount of researchers applying for grants. Something the CAA has been working on.

Some groups in other countries just try to lobby for funding. The CAA (and some other groups) have actually raised $ which also helps on the research issue as I say.

 

[Katie]

This



would be nice but I don't see how you can do it with the non-XMRV folks until something XMRV-like comes along. What CFS is is up in the air in the research community. Until you have a really strong finding - another gotcha moment like XMRV - CFS is going to be a multi-factorial illness - which means to me that many interpretations will be present - and at least within the research community - legitimate. If you want to get rid of the psychological focus that some sections of the research community give this disease you need a really strong physiological finding to peel them away.

The big problem, though, is lack of research and lack of government funding. How are you going to get that gotcha finding when you get miserable funding? Since this disease is multifactorial - you have very little bits of research spread across multiple body systems which is a recipe for agonizingly slow process; ie years of each of our lives just to tie down ONE FINDING. It could easily take five or ten years to make substantial progress on ONE LITTLE issue. Until this disease receives adequate funding it'll continue on and on in this petty pace until we all live out our natural lives. Honestly I expect nothing less.

That's obviously changed -at least for now - for people with XMRV - since the research community has found something in CFS that they actually want to study. If XMRV works out then at least a section of CFS patients are essentially set! They will get the research they need.

But the rest of the community won't. The rest of CFS is complex so they shie away from it; they're not interested in how many people are suffering or what the economic costs are - they couldn't care less; they're interested in the next hot topic.

Since the federal research agencies aren't interested in funding CFS I or making it a hot topic) then our only path is to force them to do so - not an easy task since they are one area of the govt that is somewhat insulated from public pressure. It can be done but it requires strong advocacy efforts - which the CFS community has shown little willingness to get engaged in - so we continue hoping that a lightning strike like XMRV somehow descends from the sky.

The cups is half full Cort

I think the CFSOUT campaign is worthwhile purely to get ordinary people to pay attention and understand that those left behind by XMRV aren't the 'REAL psychological' cases and to counter any moves by vested interests. Just to get folk to have a little knowledge that CFS is organic might just help someone call up a friend with CFS they haven't seen in a year. Every little helps. We do have a lot of evidence to fall back on, especially Dr Kerr's research which might go a long way to mopping up those who are XMRV-

Also, we are the CFS community and fresh_eyes is doing a lot to gee people up and get them excited about getting involved. It's good to be prepared and it's good for the soul too. Can't hurt to give it a bash.

Merry Christmas Cort

 

[Cort]

Right, The CFSOUT idea is a good one and I don't mean to squash that it in any way.

I guess I was thinking more on the research end; - how are we going to get the federal government interested in devoting enough research to this disorder that we can find a solid agreed-upon physiological basis for it?

Educating the public with the CFSOUT idea and others is an important part of getting the political community on board - which I believe is essential since the federal agencies have no interest at this point in devoting significant thoughts to this disorder (XMRV notwithstanding). We need all the help we can in that arena.

The CAA is funding small studies that will hopefully gather enough data so that they get funded by the NIH. So far they've gotten one funded - which is pretty darn good since the success rate for CFS grants is about 8%. If we had 15 or 20 of those little studies underway I would feel pretty good about things.

Until the federal government starts putting up real money for CFS we're in trouble. CFSOUT and other projects like that are a good way to get the public to understand that this disease is real and deserves funding. (Thats so I should've ended the other e-mail ). Good luck with the project.

 

[Dolphin]

The CAA is funding small studies that will hopefully gather enough data so that they get funded by the NIH. So far they've gotten one funded - which is pretty darn good since the success rate for CFS grants is about 8%. If we had 15 or 20 of those little studies underway I would feel pretty good about things.

I think you should have made clearer that you were talking about a particular time frame. More than one of the studies they have funded over the years has gone on to get NIH funding.

And the employment of Suzanne Vernon I hope will lead to more research dollars and shows a commitment to research. As I say, a lot of groups around the world don't support research in terms of funding research and certainly not in terms of employing a scientist like this. There is always room for improvement in any group but I think it should be recognised that they are doing good things that not all groups around the world are doing.

 

[Cort]

Good point Tom. One of the CAA's investigators just recently got a big research grant to study endogenous retroviruses (as opposed to exogenous retroviruses such as XMRV) in CFS. The CAA gave her enough funding to gather the data she needed to apply for an 'ROI' - you have to have data to apply - and she got it! That means she has substantial amount of money for several years to study whether retroviruses that were formerly embedded in our genome have, escaped so the speak, and are now active in our bodies.

XMRV and these HERV's are interesting one-two punch. XMRV is believed to have been an endogenous retrovirus at one time!