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

[Katie]

A little off topic but what happens to ME/CFS advocacy groups if XMRV is proven to cause ME/CFS symptoms in a subset, let's chuck out 60% as a theoretical number from my head. How should the group move forward? Should they devote energy towards the 40% left XMRV-? Should they focus on pushing for XMRV funding, treatments and further research? Can they do both?

A huge fracture is going to occur in all groups around the world. Those within the organisations with ME will move towards XAND/XMRV activism if they are found positive and those who are negative will remain or restart their group to continue the fight. Doctors and non-ME'ers will scatter, some following XMRV and some remaining though I see most following XMRV.

This is what concerns me for the future. There's a lot of if, buts and maybes to address but if XMRV pans out then we are in for a huge and disorganised upheaval which will benefit XMRV/XAND much more than CFS which in XMRV's wake will be left stranded, disorganised and open to more psychologising and opportunistic predators pushing their cures and snake oil.

 

[fresh_eyes]

This is what concerns me for the future. There's a lot of if, buts and maybes to address but if XMRV pans out then we are in for a huge and disorganised upheaval which will benefit XMRV/XAND much more than CFS which in XMRV's wake will be left stranded, disorganised and open to more psychologising and opportunistic predators pushing their cures and snake oil.

Well said, Katie. I've given this some thought, and have been thinking that the best thing we can do is to lay the groundwork to gain leverage from XMRV to benefit everyone - along the lines of, If XMRV causes many cases of CFS, some other, similar thing that's not yet discovered probably causes the rest. Let's discover it! That's why I'm interested in the re-branding of "CFS," because I think many of us will be stuck with it for the time being - I don't think XMRV is going to hit it out of the ballpark and solve *all* our problems, at least not immediately. Your thoughts?

 

[Katie]

Well said, Katie. I've given this some thought, and have been thinking that the best thing we can do is to lay the groundwork to gain leverage from XMRV to benefit everyone - along the lines of, If XMRV causes many cases of CFS, some other, similar thing that's not yet discovered probably causes the rest. Let's discover it! That's why I'm interested in the re-branding of "CFS," because I think many of us will be stuck with it for the time being - I don't think XMRV is going to hit it out of the ballpark and solve *all* our problems, at least not immediately. Your thoughts?

We've got several forces to deal with. I'm writing this as a stream of consciousness but I'm going to try and keep my thought organised, bit like taming a angry bull with a wicked hangover but I'll try!

Force One: XMRV/XAND will most likely be dealt with by retrovirologists when it comes to research, this may be completely missing the mark for remaining ME/CFSers. So...

Force Two: Funding. If ME/CFS/XAND remain as one funding unit, how should the funding be divided. Either way, there are going to be peed off people and the threat of fracture occurs again

Force Three: Psychologists. It's happened before where a subset of 'unexplained illnesses' once in the realm of psychiatry were found to be physiological the remained are stuck with the 'REAL psychological cases'. Think along the lines of how people with MS were treated pre and post discovery and you'll see where my fear is grounded. We've got very were established figures on both sides of the pond with careers and reputations to protect and XMRV- folk will be vulnerable to a power grab.

Force Four: In fighting. XAND vs ME/CFS. The real versus the unknown. Funding, legitimacy, media message - it's going to get messy.

Force Five: XMRV/XAND would be better served with it's own separate advocacy group. It's harsh but if they have their own then they can get their funding, define a message to communicate to the world and scientific communities and really focus their efforts on this retrovirus. We may have been a group all together at one point, but that's because we were helping each other, if a group of people are a hindrance to recovery and research, then they've gotta go.



But good stuff...

Good Stuff One: Due to the joint grant between Drs Kerr and Mikovits I believe that the Whittemore Peterson Institute (which will become the most influential research facility in the world on XMRV should it pan out) aren't looking at ME/CFS with tunnel vision. If they can keep the focus on working out the whole puzzle then the advocacy groups might be able to bounce off their trajectory and channel them money like Rockerfellers. Gene expression work will be as big as XMRV.

Good Stuff Two: The media seem to be on side which will help ward off power grabs. Also, as XANDers emerge, stories about ill treatment by doctors, motivational speakers, quacks and what not will emerge, hopefully protecting the vulnerable for the short term.

Good Stuff Three: People on a forum called Phoenix Rising are thinking ahead and planning for the future. We've just got to decide if it's the best thing for XMRV- to try and hang on XMRV's coattails or go it alone and find their own answers through their own advocacy group with a definate message 'please don't leave us behind'.

 

[Khalyal]

Katie...

A wonderful stream of consciousness! That was a very good analysis.

 

[valia]

A little off topic but what happens to ME/CFS advocacy groups if XMRV is proven to cause ME/CFS symptoms in a subset, let's chuck out 60% as a theoretical number from my head. How should the group move forward? Should they devote energy towards the 40% left XMRV-? Should they focus on pushing for XMRV funding, treatments and further research? Can they do both?

A huge fracture is going to occur in all groups around the world. Those within the organisations with ME will move towards XAND/XMRV activism if they are found positive and those who are negative will remain or restart their group to continue the fight. Doctors and non-ME'ers will scatter, some following XMRV and some remaining though I see most following XMRV.

This is what concerns me for the future. There's a lot of if, buts and maybes to address but if XMRV pans out then we are in for a huge and disorganised upheaval which will benefit XMRV/XAND much more than CFS which in XMRV's wake will be left stranded, disorganised and open to more psychologising and opportunistic predators pushing their cures and snake oil.

If XMRV turns out to be the cause of ME (Myalgic Encephalomyelitis) those who test negative wont have CFS and should be investigated properly for what is really wrong with them, so that they may be treated.
Whether it be Lyme disease, MS, depression or any number of other illnesses that have been tossed into the same basket.

A diagnosis of CFS can only ever be a misdiagnosis

http://www.hfme.org/misdiagnosis.htm

 

[jspotila]

----When a spokesperson for the CAA believes she has a valid criticism of the work of a research institution, she could talk to the researchers who did the study about her criticism before publishing it. In the Xplained case, Dr. Vernon may have; it appears that she did not.

-----When the CAA finds it has been somewhat off in its public criticism of a study, it could issue a public correction, not just erase the erroneous criticism from its website. In the Xplained case, I think this was particularly important to do, for the original article left the impression with some of your membership that the WPI study had a serious flaw.

Both excellent suggestions! I am passing on the public correction idea to the staff. And while most of it is not public, Dr. Vernon and Kim both communicate very frequently with researchers including Dr. Judy Mikovits. There is a constant flow of information among all the research players - questions, comments, critiques, responses, ideas, etc. That is how research advances, and this is a big part of what Dr. Vernon does on a daily basis.

 

[fresh_eyes]

A diagnosis of CFS can only ever be a misdiagnosis

Hi valia, welcome. I know a lot of people in the community - particularly in the UK - share this point of view, and for good reason. I'm not sure if it's served us overall, though - it seems to have reinforced public perception that at least *some* people with CFS are "Not really sick." Perhaps that's not the best emphasis?

 

[jspotila]

Perhaps Jennie Spotila would be willing, if we were to start another thread devoted only to concrete suggestions for change, to respond to those suggestions.

Jennie, would you? You could say, Hey, great idea, Ill take that one to the board. Or, Ill talk to Suzanne Vernon about that. Or, Good idea. Actually we are already doing that. See this link. And so on.

I am willing, and as Cort mentioned I am already reviewing the materials Khaly collected as well.

On a personal note, I am very ill. I have an average of two functional hours a day, and so I will not be a constant presence on the boards. It may take me awhile to respond to questions, but I promise you that I will respond. Also, my term as chairman ends on December 31st. I will remain on the Board (secretary in 2010), and I will continue to participate here and in other dialogues. But between the holidays, and working on the hand over the chairmanship to Adam Lesser, I am stretched very very thin.

I will be here, I will be reading, and I will pass on your suggestions and criticisms to the Board and/or staff. I will do my very best to respond to your questions.

 

[_Kim_]

A diagnosis of CFS can only ever be a misdiagnosis

If there are yet to be discovered other causes (de Freitas retrovirus, perhaps) CFS is not a misdiagnosis, but an unexplained diagnosis.

 

[fresh_eyes]

Katie, really great analysis, especially for a bull with a bad hangover! confused:) Your ability to look ahead is very impressive.

Right now, I'm particularly interested in your conclusion: "We've just got to decide if it's the best thing for XMRV- to try and hang on XMRV's coattails or go it alone and find their own answers through their own advocacy group with a definate message 'please don't leave us behind'."

I think we need to change public perception of "CFS" (I know, I'm harping on that today, sorry) so that it won't be an albatross around anybody's neck, and then ride those coattails like there's no tomorrow. (Mixed metaphors, anyone?)

 

[Advocate]

Dr. Vernon and Kim both communicate very frequently with researchers including Dr. Judy Mikovits. There is a constant flow of information among all the research players - questions, comments, critiques, responses, ideas, etc...this is a big part of what Dr. Vernon does on a daily basis.

Hi jspotila,

I think that Cort (?) mentioned in a recent post that the CAA has a suite of offices in Charlotte. A few years ago I read that Kim moved out of the state. Little bits of information or misinformation like that plant a big seed of doubt about how she spends her time, how she earns her salary.

So here's an idea. Part of the problem is that people can't visualize what it is that Vernon and McCleary actually do to earn their salaries. Assuming that the two work every day from sunup to sundown, perhaps it would reassure people if someone did a timeline, a "Day in the Life of..." to show what is actually being done in, say, every 10-minute period. In other words, document in detail a typical work day.

 

[PoetInSF]

Here's what I think will happen. Actually I would be surprised if this doesn;t happen. Unless XMRV tanks completely -which I can't imagine - a certain percentage of patients will test positive for it. The patients will state that means they have XAND and they are a new subset and have a different disease.

How would that be different from EBV-postive patients claiming to have CEBV different from CFS? Unless one can prove that EBV is the cause, that would be ridiculous, IMO.

The CAA has nothing to lose by having XMRV be the cause and everything to gain; more members and money for them as CFS gains recognition and legitimacy, a great research topic for their research program, a great hammer they can use to ask for more research funding on the Hill (they do that every year).

They may gain more members and money appealing to anger and frustration, but they could lose their reputation as a legit advocacy/research organization if XMRV turns out to be another EBV, HHV6 or HTLV1. With the CFSers chasing validation and politics regardless of the science, it could also turn off serious scientists from entering the field. A prudent thing would be to welcome XMRV research, but stay cautious reminding people a lot remains to be done. To me, that's what CAA has done, and I endorse it.

 

[valia]

it seems to have reinforced public perception that at least *some* people with CFS are "Not really sick." Perhaps that's not the best emphasis?

Hi Fresh Eyes,

Thank you for the welcome.

The term CFS was designed for that very purpose, to create that perception.

I dont know anyone that takes CFS seriously, not even my own family and certainly not any doctor I have seen.

 

[jspotila]

So here's an idea. Part of the problem is that people can't visualize what it is that Vernon and McCleary actually do to earn their salaries. Assuming that the two work every day from sunup to sundown, perhaps it would reassure people if someone did a timeline, a "Day in the Life of..." to show what is actually being done in, say, every 10-minute period. In other words, document in detail a typical work day.

Great idea! Kim works in the Charlotte office. I am going to pass this idea on.

 

[fresh_eyes]

The term CFS was designed for that very purpose, to create that perception.

I dont know anyone that takes CFS seriously, not even my own family and certainly not any doctor I have seen.

Exactly right, valia. But perhaps we can turn that on its head??? We were just talking on another thread about the Gay Rights movement's chants of "We're here, we're queer, get used to it!" If they can reclaim the word "queer," maybe *we* can reclaim the term that has been used to oppress *us*?

 

[leelaplay]

Hi Jeannie (I hope I have that right)

I am impressed by and appreciative of your presence here on this forum. As I have read this thread and participated in it and other threads on thoughts of our advocacy needs, the underlying theme I've picked up regarding the CAA is that people haven't felt that the CAA is connected to and reflects the needs and thoughts of the patient community.

I think your presence and that of the other Board member here and your willlingness to participate are great steps at beginning to build that bridge.

I guess internal conflict within a community is necessary at times to grow and develop clarity, but I always want it to be over as quickly as possible. I suppose mostly because conflict stresses me out, and therefore worsens my symptoms. But also because I want us to be pouring our energy into finding a cause and a cure and getting proper medical care, insurance and a general understanding of the disease.

Thank you for explaining your personal situation. The first unwritten rule in my mind on the forum is that we all want each other (and ourselves) to take care of ourselves and not overdo. So, while I eagerly await your response, please take care of yourself first over the holidays.

I think a CAA that we can see asks for input, is responsive to our needs, and communicates clearly is maybe the best holiday present I could ask for. And I'm a Canadian! But what you do affects ME/CFSers around the world.

My final thought is that if we can all work together, we can be much more powerful and effect change more efficiently and rapidly.

So take care of yourself.

And I'm thrilled you're here!

islandfinn

I am willing, and as Cort mentioned I am already reviewing the materials Khaly collected as well.

On a personal note, I am very ill. I have an average of two functional hours a day, and so I will not be a constant presence on the boards. It may take me awhile to respond to questions, but I promise you that I will respond. Also, my term as chairman ends on December 31st. I will remain on the Board (secretary in 2010), and I will continue to participate here and in other dialogues. But between the holidays, and working on the hand over the chairmanship to Adam Lesser, I am stretched very very thin.

I will be here, I will be reading, and I will pass on your suggestions and criticisms to the Board and/or staff. I will do my very best to respond to your questions.

 

[valia]

Exactly right, valia. But perhaps we can turn that on its head??? We were just talking on another thread about the Gay Rights movement's chants of "We're here, we're queer, get used to it!" If they can reclaim the word "queer," maybe *we* can reclaim the term that has been used to oppress *us*?

Well, perhaps we could, but why would we want to?

Why would we want to keep words that say long-term tiredness and try to persuade the public that they mean something else?

Don't we have enough mountains to climb?

 

[MEKoan]

I don’t know anyone that takes CFS seriously, not even my own family and certainly not any doctor I have seen.

Is there a way for doctors who took part in the CAA supported training to sign on to a registry of doc.s qualified to treat ME/CFS?

This is such a big issue for patients and was such a big initiative of the CAA. Someone, Cort perhaps, said 35,000 doc.s went through the program. 35,000 doc.s able and/or willing to deal with patients with ME/CFS is a great resource if people can find them.

Excuse me if I've got hold of the wrong end of the stick here, I'm Canadian

 

[fresh_eyes]

Well, perhaps we could, but why would we want to?

Why would we want to keep words that say long-term tiredness and try to persuade the public that they mean something else?

Don't we have enough mountains to climb?

Personally, I would want to because we appear to be stuck with them.

 

[fresh_eyes]

Is there a way for doctors who took part in the CAA supported training to sign on to a registry of doc.s qualified to treat ME/CFS?

Great suggestion, Koan. We should present this to the CAA board members who are on the forum.