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

[Quilp]

loldershaw and advocate

Firstly, when has this person resorted to a 'personal attack' ? That is an outrageous comment to make. He mentioned trusting one person more than another. I trust Judy Mikovits more than I trust Bill Reeves. That is not a personal attack on Reeves, though in the minds of yourselves it could be construed as being so.

Secondly, I am sure Cort is more than able to defend himself.

Thirdly, I think you'll find that Cort's comments on the actions and statements of Hilary are to say the least, 'robust'. I did not see any comments castigating Cort.

Kind regards, Mark

 

[JayS]

I don't think it's a lot to ask that the CAA understand how patients might feel about seeing Kim McCleary's name on a document that Reeves' name also appears on. It could be an incredibly important document, but anything short of an announcement of successful replication of WPI's XMRV research that has these two names on it is going to ruffle some feathers. They're supposed to know something about PR, so I don't think it's unreasonable to suggest they should understand how people are going to feel.

A statement of a few sentences explaining that they understand frustration due to views some hold that patients might consider controversial, and that the merits of this document deserve that it be viewed in context, is not a lot to ask. That names we don't want to see linked will occasionally be linked. That they respectfully request that we view the document for what it is rather than who authored it. Or some such.

I would tend to think that had they done that, that Cort wouldn't feel it necessary to offer up a defensive post that he shouldn't have had to write. That they didn't suggests that they don't understand how we might view something like this, or why. That may result in suspicious patients being perceived as overly sensitive, but I would submit that we have good reason to be. This is perhaps a small issue, but it is one of many, too many for it to not be reasonably viewed as a symptom of a larger one.

 

[Cort]

I think you're right on Jay and this is one of the problems the CAA has - they do respond effectively to issues like that. As a matter of fact they generally don't respond at all. I think this has been a huge problem for them since it allows negative and what I believe are often false impressions to settle in and become like concrete after awhile. This inability to kind of bend down and get into the head of the patient population and relate to them at that level is a big problem

I would point out though that its one paper on a pretty innocent topic - education programs; if the CFS patient community is going to go nuts about this after the CAA spent the last year and half bashing the CDC just as hard at is could - that would be very short sighted. Hopefully they're discerning enough not.

CharityFundraiser hit it right on as well - these are communications that seemed aimed more at Ph.D's than patients. Maybe Ph.D's is putting it too strongly but still they tend to be rather technical and dry communications.

It doesn't mean they're not doing good work - they really are and from what they work very hard - but it would behoove them to loosen up a little.

 

[Cort]

Here are some of my comments to Khaly's post.

Hillary claims that the CAA pulled the plug on Elaine DeFreitas.
She backs this up with first-hand information given to her by Marc Iverson, then-president, and Dr. David Bell.

I certainly don't disagree with this but it misses the rather important point that the only reason that the CAA could 'pull the plug' on Elaine was that it was vigorously funding her. I would remind you that it wasn't just the CDC that was unable to replicate her work; it was also an independent team in the UK and a team in Japan. Years later another broad sweep of retroviruses was made and again nothing showed up. XMRV didn't apparently show up in the big viral microarrays the WPI was running on its patients either. (It was a tough bug to find). The WPI recently announced that XMRV was not Dr. DeFreitas retrovirus as well.

The CAA has always had a strong research advisory panel. Its not just Marc Iverson or Kim McCleary making decisions; they've always had vigorous input from researchers. Apparently those researchers advised them that the retrovirus work was not going to pan out they stopped funding Dr. DeFreitas. Despite Hilary's continuing outrage at this everything at this point suggests that they were correct!

Hillary claims that the CAA decided to be mainstream and cooperate with government, to the point of running articles by researchers and publishers for vetting before printing.
She backs this up with first-hand conversation with unnamed CFSAC member, and direct quotes by Kim McCleary. Further back up in personal conversation with Dr. Paul Cheney, regarding the overall tone of the CAA, is also mentioned.

The CFIDS Association decided to concentrate their efforts on getting policy makers such as doctors and other public health providers to understand that CFS is a real and serious disorder. To that end they pushed the CDC to mount a national public relations campaign and a provider education program. So yes they attempted (and succeeded) in leveraging federal assets to get the word out about ME/CFS. They obviously couldn't do that alone; in my opinion that was a smart thing to do; in the end the federal goverment spent millions of dollars advertising ME/CFS was a serious disorder.

Hillary claims that a Truth Squad beleaguered the roll-out of Osler’s Web.
She backs this up by relating details of personal experience with the interference of NIH scientist Paul Levine during her book-tour.

I have no idea about this. If this is what triggered Hilarys anger 15 years ago so be it. I do know the CAA funded her while she was writing the book and got her access to the CDC documents that she used so effectively. I also know they were absolutely astonished to find them described in negative terms in the book.

Hillary claims that the CAA’s Kim Kinney (McCleary) and Tom Sheridan set Bill Reeves up to run CDC without fear of reprisal, by enabling him (the problem) to become the whistleblower (unfireable).

You can look at this how you want. Reeves testimony is what enabled the investigation to succeed. Think of it - the CAA and other groups and individuals including Hilary Johnson - accuse the CDC of misusing funds. Everyone in the CDC says no we didn't but then a top researcher in the program applies for federal protection under the Whistleblower Act and provides documents that document those claims. What are you going to do? What would you do? Could they have proved their case without Dr. Reeves coming forward? I would guess that their chances of doing so would have been drastically reduced.

Hillary claims that the CAA spent 3.5 million on public relations for CDC in 2006, and that CAA is a contractor to the government agency that is responsible for lack of research into this disease.
This is a matter of public record.

The problem with this statement is that it connects two separate issues -something Hilary does quite frequently. Yes the CAA spent 3.5 million dollars of government money on public relations. They got it from another arm of the CDC (not the CDC research program). I'm not sure what this means; "that is responsible for lack of research"; the CDC has done alot of research - some of it has been very good, lately most of it hasn't been.

This is the key point tho; just because the CDC's CFS research program isn't doing scintillating research or is even doing bad research is no reason for the CAA not to get the CDC as institution to pay for a media campaign to alert the public and physicians that CFS is a legitimate, real and serious disorder.

Hillary claims that the CAA hosted the rollout of CDC’s causation theory at the National Press Club, DC, 2006, where CDC (starring Bill Reeves and Suzanne Vernon) explained that genetic predisposition to inability to handle stress, plus childhood abuse, equals CFS.

Childhood abuse was not part of the picture back then as I remember. What I remember from that event is that the head of the CDC - which has budget of about 16 billion dollars - stood up in a national press conference - and told the world that ME/CFS was real, that it was legitimate and that it was very serious. Dr. Klimas was there, Dr. Komaroff was there....they appeared delighted that our second biggest federal medical organization was telling the world that this was a real disease. Hilary's last comment in an oversimplification of whatever research findings there were.

Hillary claims that Suzanne Vernon moved from CDC to CAA and Kim McCleary and Suzanne Vernon get final say on who gets a grant and who doesn’t.
This is factual. There is an outline of how the grant proposals get handled right on the CAA website. The undercurrent of CDC headset is still there, has never been addressed, and no matter what spin you want to put on it, doesn’t show any signs of letting up. I’ve already given you all of my sources for why I have come to the same conclusion independently.

Yes of course they have final say on who gets the grants. If you'll look at the grants they did approve I think you'll find that they are approving excellent grants. How can you say the 'undercurrent of the CDC is still there' when they're approving grants on

• lactic acid and mitochondrial problems in the brain
• gastrointestinal microbiomes
• vascular problems and nitric oxide
• repeat exercise studies and metabolic dysfunction
• endogenous retroviruses

Where is the undercurrent? Please point out the undercurrent to me. If you can't find evidence of an undercurrent then please don't spread the word that there is one. If you'll look at the research you'll find that Suzanne Vernon has taken an 180 degree turn from the CDC's focus. There's no allostatic stress in this program. Theres no sexual abuse or cognitive behavior therapy. I don't even think there's a cortisol connection. Remember she did leave the program and there were surely reasons why - their research may very well have been one reason why.

Hillary claims that the CAA turned down 6 grant requests from WPI.
Hillary most likely can’t reveal her source for this. I have the same information from probably the same source, and can’t reveal either. CAA has stated that they received NO requests for grants for XMRV research, but it most likely would not have been called XMRV research at the time, because that was the secret. But I personally am convinced, based on her track record, that Hillary has a source for this information and did not just pull it out of her donkey.

I have no idea. I think its alot of grant requests in a short period of time from the WPI given the CAA has only gone through one grant cycle in the last couple of years. I hope the CAA will fund grants on XMRV and I would very surprised if they did not at some point; as I noted earlier they've funded grants on pathogens throughout their history.

Thanks Hilary and Khaly for the opportunity to respond to some of their concerns.

 

[Cort]

With regard to Dr. Vernon's work on the stress response if you think the stress response is not involved in this disease I have a bridge in New York to sell you.

Numerous studies have implicated HPA axis abnormalities in ME/CFS. They've also documented problems with heart rate variability during sleep and waking. Those findings indicate that the autonomic system - the other side of the stress response - is screwed up in CFS. The ANS controls blood flow to the brain (remember orthostatic intolerance), the muscles and the organs .

Both the HPA axis and the ANS regulate the immune response; which means they could be responsible for the immune abnormalities in the this disease and hence the pathogen problems. I have no problem with anyone studying the stress response in this disease; it may or may not be the end all in this disease but it definitely plays a role.

Complaining about the an avenue of research is one thing; complaining that one researcher at one time works with another is quite another. Suzanne Vernon has probably worked with 50 different researchers over her career.

If you want something to base your opinion of Suzanne Vernon on with regards to ME/CFS you might want to use the research the CFID's Association is funding under her direction. http://www.cfids.org/about/acceleratecfsresearch.asp If that doesn't meet with your expectations then don't fund the CAA.

 

[Andrew]

This CAA stuff keeps bouncing around in my head. I see things they do that make me angry. I see other things they do that make sense. I think I've been trying to see them as black hats, but this does not fit.

I'll just try to have faith in the dialog that has been opened up between members here and CAA. And try to refocus my energy onto the projects people are posting here and asking for help.

 

[Dolphin]

I just saw the following post on Co-Cure regarding Dr. Suzanne Vernon who, of course, works closely with the CAA. I just find it hard to understand why an organisation supposedly working with the best interests of CFS/ME patients at heart would want to associate in any way with such a person who so obviously favours the bio-psychosocial model for CFS/ME. Doesn't this say a lot about the CAA? It does to me.



"Dr. Suzanne Vernon of the CFIDS Association continues to collaborate with
neo-Freudian Dr. Christine Heim on research regarding the working hypothesis
of the physiological role of psychosocial stress.


Biol Psychol. 2009 Oct;82(2):125-32. Epub 2009 Jul 3.
Impact of acute psychosocial stress on peripheral blood gene expression
pathways in healthy men.

Nater UM, Whistler T, Lonergan W, Mletzko T, Vernon SD, Heim C.

Chronic Viral Diseases Branch, National Center for Zoonotic, Vector-borne
and Enteric Diseases, Centers for Disease Control & Prevention, 1600 Clifton
Rd, MS-G41, Atlanta, GA 30329, USA.

We investigated peripheral blood mononuclear cell gene expression responses
to acute psychosocial stress to identify molecular pathways relevant to the
stress response. Blood samples were obtained from 10 healthy male subjects
before, during and after (at 0, 30, and 60 min) a standardized psychosocial
laboratory stressor.

Ribonucleic acid (RNA) was extracted and gene expression measured by
hybridization to a 20,000-gene microarray. Gene Set Expression Comparisons
(GSEC) using defined pathways were used for the analysis. Forty-nine
pathways were significantly changed from baseline to immediately after the
stressor (p<0.05), implicating cell cycle, cell signaling, adhesion and
immune responses.

The comparison between stress and recovery (measured 30 min later)
identified 36 pathways, several involving stress-responsive signaling
cascades and cellular defense mechanisms.

These results have relevance for understanding molecular mechanisms of the
physiological stress response, and might be used to further study adverse
health outcomes of psychosocial stress.

PMID: 19577611 [PubMed - indexed for MEDLINE] "

I presume this was done when Suzanne Vernon worked for the CDC. It can take a few years to get published.

What I'd like to know is whether any of the CDC CFS budget was used.
Don't know much about Lonergan W and Mletzko T (maybe they'd come up on PubMed) but Nater UM, Whistler T, Vernon SD and Heim C are on lots of CDC CFS papers.

The CDC are looking at gene expression in CFS patients (empiric/Reeves definition) and they are looking at the effect of stress (standing up to give a speech - I think there could be confounding with orthostatic intolerance). I would think it is very likely that this paper will be quoted in one or more CDC CFS paper so as I'd say, I'd like to know whether the CDC CFS budget was used. They've spent money (post GAO report) on things that weren't on CFS e.g. Hep C research out of the CFS budget.

 

[Marylib]

Semantics

Wilddaisy,

I actually think you and Cort are in agreement here. Just a matter of wording.

 

[marley100]

Yes, Vernon published a decent study on HPA axis abnormalities. But the CDC isn’t interested in that kind of stress response. You have to know after all this time that the CDC isn’t interested in the adrenal glands of ME/CFS patients—otherwise that’s the kind of research the agency would pursue. Instead, it publishes nonsense in a psychiatric journal (i.e., “Childhood trauma and risk for chronic fatigue syndrome: association with neuroendocrine dysfunction”). Reeves’s mission is to prove that this disease is psychiatric, even if he has to make his findings up. He throws in the neuroendocrine data to seem scientific, but he’s all about making the disease a joke. The New York Times reported on much of this recently. He’s a fraud, he’s a liar, he stole money from us, and he’s sold us down the river.

Speaking of selling us down the river:

What kind of patient organization would trash the stalwart ME/CFS researcher Dr. Elaine DeFreitas after the CDC unfairly and publicly trashed her retroviral work, publicly humiliated her and left her career destroyed?
The CFIDS Association, that’s who.

What kind of patient organization would trash journalist Hillary Johnson after her brilliant book, Osler’s Web, suggested ME/CFS was contagious?
The CFIDS Association, that’s who.

In my view, you can’t negotiate or have a meaningful dialogue with a patient organization that’s capable of such unconscionable behavior. The CFIDS Association (CAA) has shown repeatedly that it can’t be trusted to do the right thing. The CAA will continue sell us down the river if it’s expedient for the CAA to do so.

This is not ancient history. The CAA’s Dr. Suzanne Vernon’s sickening, nitpicking comments about the problems with the Science XMRV study were shameful. “The design of replication studies should include CFS patients who are similar to those selected by Dr. Peterson and reported in the Science study,” she wrote. “Unfortunately, the details about the CFS patients were not sufficient to enable independent investigators to select similar CFS patients. For example, we need to know the age, sex, duration of illness, medical history, and medication use, to name a few characteristics, of the studied patients to select CFS patients who as similar as possible to the original group. We also need to know something about the healthy control subjects, since there is nothing in the paper or supplementary materials that describes how they were selected. Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls. We are actively working with several independent research groups to expedite these studies.”

I mean really. The CDC has wasted and continues to waste tax dollars on research into childhood sexual and emotional abuse as the potential cause of ME/CFS—and that kind of bogus inquiry is OK with the CAA, as is the CDC’s bogus patient group. Instead, the CAA’s Vernon picks on the stellar Mikovits study published in one of the most respected journals in the world. With friends like these.... It’s like Dr. Mikovits wrote a brilliant book—but critic Suzanne Vernon panned it because of one comma fault.

And then Vernon goes on to congratulate herself and the CAA by saying they’re “actively working” with research groups to expedite the studies. The CAA wouldn’t help fund the Mikovits study, then nitpicks over the landmark findings, and then takes credit for the work it’s going to do on it. I mean really.

Yes, the CAA still has its supporters. Not that many people know the sordid history of this organization. The CAA won’t have followers for long if we’re vocal and forthcoming about their history of patient, researcher and journalist abandonment. In my view, the only way through this big hot mess is to get rid of this sorry group and bring in a new team that truly has our interests at heart—rather than the government’s. Sadly, sometimes you really do have to throw the baby out with the bathwater.

 

[Cort]

Marley just joined us today!

But the CDC isn’t interested in that kind of stress response. You have to know after all this time that the CDC isn’t interested in the adrenal glands of ME/CFS patients—otherwise that’s the kind of research the agency would pursue. Instead, it publishes nonsense in a psychiatric journal (i.e., “Childhood trauma and risk for chronic fatigue syndrome: association with neuroendocrine dysfunction”). Reeves’s mission is to prove that this disease is psychiatric, even if he has to make his findings up.

Farbeit from me (or anyone of us) to know what Dr. Reeves is thinking but here are some of CDC studies on the stress response. The CDC used cortisol measurements to uncover HPA axis abnormalities in the people who'd been sexually abused. Interestingly a significant set of patients in that population were not sexually abused - and did not have cortisol problems; ie they don't believe all patients have this problem.

The CDC is now going to do a study that measures all types of 'trauma' in ME/CFS patients when they were young - from infection to injury to god knows what else. They believe that because of genetic abnormalities and other factors that the HPA axis and ANS get dysregulated in ME/CFS patients over time. Its not a terribly exciting theory but its not crazy either; I just think theres alot more to the disease.

• Neuroendocrine and immune network re-modeling in chronic fatigue syndrome: An exploratory analysis. Genomics 2008 doi:10.1016/j.ygeno.2008.08.008
  
• Genetic evaluation of the serotonergic system in chronic fatigue syndrome. Psychoneuroendocrinology 33:188-197, 2008 doi:10.1016/j.psyneuen.2007.11.001
  
• Glucocorticoid receptor polymorphisms and haplotypes associated with chronic fatigue syndrome. Genes, Brain and Behavior 2006; doi:10.1111/j.1601-183X.2006.00244.x
  
• Glucocorticoid receptor polymorphisms and haplotypes associated with chronic fatigue syndrome. Genes, Brain and Behavior 2006; doi:10.1111/j.1601-183X.2006.00244.x

What kind of patient organization would trash the stalwart ME/CFS researcher Dr. Elaine DeFreitas after the CDC unfairly and publicly trashed her retroviral work, publicly humiliated her and left her career destroyed?
The CFIDS Association, that’s who.

It would be much more accurate to say that the CAA, after consulting with its advisors on research, declined to keep funding her. There's no doubt that it was a bad situation. As I remember reading in Osler's Web she was a young researcher who was reluctant to go public with her results - it was tragic for everybody what occurred but based on the studies which were done - then and later - they probably did the right thing; for whatever reason at least at this point Dr. De Freitas study results appear to have been wrong.

The CAA is not in the business of publicly humiliating people - I've never seen them respond in other than a very conservative fashion - unlike some of their critics .

“Unfortunately, the details about the CFS patients were not sufficient to enable independent investigators to select similar CFS patients. For example, we need to know the age, sex, duration of illness, medical history, and medication use, to name a few characteristics, of the studied patients to select CFS patients who as similar as possible to the original group. We also need to know something about the healthy control subjects, since there is nothing in the paper or supplementary materials that describes how they were selected. Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls. We are actively working with several independent research groups to expedite these studies.”

I agree that this

For example, we need to know the age, sex, duration of illness, medical history, and medication use, to name a few characteristics, of the studied patients to select CFS patients who as similar as possible to the original group.

was not necessary. It would be good to have that but it was not necessary. I think they had some of it.

Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls.

I don't think anyone can really disagree with this statement

I mean really. The CDC has wasted and continues to waste tax dollars on research into childhood sexual and emotional abuse as the potential cause of ME/CFS—and that kind of bogus inquiry is OK with the CAA, as is the CDC’s bogus patient group. Instead, the CAA’s Vernon picks on the stellar Mikovits study published in one of the most respected journals in the world. With friends like these.... It’s like Dr. Mikovits wrote a brilliant book—but critic Suzanne Vernon panned it because of one comma fault.

The CAA has panned the sexual abuse studies but I agree that they should have come out more strongly against the empirical definition and highlighted problems with the random sampling. I didn't really view Dr. Vernons comments as being hypercritical; most of what she said to me simply made sense regarding the next group of studies. I do agree that that that statement you mentioned above was really off the mark. The CAA got off to a bad start with XMRV - thats clear but they have apologized to some extent.

And then Vernon goes on to congratulate herself and the CAA by saying they’re “actively working” with research groups to expedite the studies. The CAA wouldn’t help fund the Mikovits study, then nitpicks over the landmark findings, and then takes credit for the work it’s going to do on it. I mean really.

This is so slanted tho; Vernon 'congratulates' herself, the CAA takes 'credit' for its work. Take away these heated words and you get this: The CAA is actively working with research groups to expedite the studies. We also know that the CAA was never asked to help fund the XMRV studies. (Really )

In my view, the only way through this big hot mess is to get rid of this sorry group and bring in a new team that truly has our interests at heart—rather than the government’s.

I don't think the CDC thinks the CAA has their best interests at heart. They think the CAA engineered all the patient disatisfaction with them - imagine that.

 

[kristin]

Cort, you are kind to defend the CAA but personally I gave up on them months ago. I tried working with them for years because I knew we needed some type of organization to advocate for us. My frustration with their lack of effective leadership, their inability to get anything of a substantive value accomplished, and even something as simple as keeping their letters and addresses to public officials and the media up to date on their website was a task far beyond their ability.

What little energy I have is better spent supporting other ME/CFS organizations that are really doing something to help us.

 

[marley100]

What do you mean you dont know what Reeves believes, Cort? He told the New York Times that he doesnt believe that the CDC will be able to replicate the Mikovits findings. Thats what he believes. He also told them he believes ME/CFS is not caused by a pathogen, but rather caused by sexual and emotional abuse. Thats what he believes. If he believed ME/CFS were a real disease, do you think he would have funneled ME/CFS allocated money to other diseases? Of course not. So please dont write that you dont know where he stands here. His actions over the years have made it clear.

As Annette Whittemore told the New York Times in November, I blame the CDC for most of this mess. And I agree, though Id add the NIH and the CAA and the damn name, which of course the government came up with so no one would take the disease seriously.

If it werent for Whittemores disgust with the CDC, the XMRV study would never have been done.

I believe you misconstrued what I wrote: The CAA didnt publicly humiliate Elaine DeFreitas; the CDC did.

The CDC refused to follow Dr. DeFreitass protocols when it attempted to replicate her findingsthats why it couldnt replicate the study. The CAA should have chastised the CDC for these shenanigans through media storiesinstead of hanging Elaine DeFreitas out to dry. When you sleep with dogs, you wake up with fleas. The CAA should have stood up and done the right thing. But it became at that moment--and remains today--a pathetic, cowardly organization in desperate need of flea dip.

I dont doubt that sexual/emotional/physical abuse can screw up cortisol levels, and I dont doubt that childhood abuse can lead to illness. However, do you see this kind of research being done on HIV or ALS patients or Alzheimers patients? Of course not. It would be a joke. Thats because these are considered physiological diseases, so research dollars arent wasted on this besides-the-point kind of research.

Imagine, if you would, Reeves designing a study on whether Parkinsons disease was caused by childhood sexual or emotional abuse. I mean, really. How long do you think hed have his job? Reeves wants this kind of silly ME/CFS research so he can keep labeling the disease psychogenic. Thats what hes devoted his career to trying to prove, and thats why its being done.

And he still has his job because many people who dont have this disease believe that its psychogenic. And thats because Reeves and company have done a fabulous job convincing them of this. But why are YOU condoning it? How can you see validity in this kind of research when so many of us are desperately ill?

As far as Dr. Vernons comments, they were inappropriate and misleading. Do the math: Vernon had two positive lines (including the first line) about the discovery, several paragraphs of neutral explanation about the XMRV study, and then one paragraph of 130 words criticizing the study. Any outsider reading would assume the study was deeply flawed, but it wasnt. It was good science replicated by two stellar groups: the Cleveland Clinic and the NCI.

The CAA didnt get off to a bad start, as you wrote. The CAA was criticizing the studywith the identical criticisms that the CDC voiced. Thats because the CAA is an organization owed and operated by the CDC. Shame on them. But the outraged public wasnt buying the CAA line, so it backed down.

Imagine how things would be different today if the government had taken CFS seriously 20 years ago, the way HIV was. Many of us might have been able to lead the lives we wanted to live, instead of waiting to live. Because of good research and good drugs, HIV/CFS doc Nancy Klimas told the New York Times that most of her HIV patients are hale and hearty.

We need to rail against the CDC for doing bogus psychogenic research. We need to stand up and contact our reps in congress and the senate and tell them to support REAL research into this disease and urge them to put pressure on the NIH to investigate the blood supply more quickly. We need to stop supporting the CAA and support the kind of game-changing research the Whittemore Peterson Institute is doing.

We need to stop sitting in the back of the busbecause if we dont, nothing will change in our lifetime. We need to act up, like HIV patients did years ago. Thats how things change. After 20 fruitless years, havent we had enough?

 

[Khalyal]

Marley

We need to act up, like HIV patients did years ago. That’s how things change. After 20 fruitless years, haven’t we had enough?

This statement encapsulates a lot of my frustration. "Mainstream" has gotten us nowhere fast.

CAA has done a lot. They have spent a lot, they have promoted a lot, they have educated a lot. But the content is based on the empirical-du-jour, as even Cort said they somehow are obligated to do....(quote If the CFIDS Association is going to represent chronic fatigue syndrome they're going to have to represent everybody that falls under the current definition - no matter how poor it is.)

I question deeply how CAA can be against the current empirical, and yet at the same time operating under its construct.

Bottom line...
Are we any better off for it, after 20 years?

 

[fresh_eyes]

I am pretty new to the CFS community (though not to the illness) and don't really have a stance on the CAA controversy. But I'd like to hear from the CAA critics how they would like to see us move forward: Try to change the CAA? Start a new organization? Join another existing organization? Direct action a la ActUp?

If we think CAA is ineffective, how could WE be more effective?

Thanks for your thoughts.

 

[Dolphin]

Basically all the papers the CDC has published from 2006 on have used the empiric/Reeves definition.

In general, there may be something with regard the HPA axis and cortisol and CFS.

But if most of the patients in the samples the CDC are using don't have CFS, so whatever they're finding doesn't necessarily mean much with regard to CFS.

 

[Dolphin]

I dont doubt that sexual/emotional/physical abuse can screw up cortisol levels, and I dont doubt that childhood abuse can lead to illness. However, do you see this kind of research being done on HIV or ALS patients or Alzheimers patients? Of course not. It would be a joke. Thats because these are considered physiological diseases, so research dollars arent wasted on this besides-the-point kind of research.

Imagine, if you would, Reeves designing a study on whether Parkinsons disease was caused by childhood sexual or emotional abuse. I mean, really. How long do you think hed have his job? Reeves wants this kind of silly ME/CFS research so he can keep labeling the disease psychogenic. Thats what hes devoted his career to trying to prove, and thats why its being done.

Don't forget that both of the studies they did on the issue used the empiric/Reeves' criteria i.e. most of the people didn't have CFS in the first place!

 

[Andrew]

FWIW, I think it was stress that wore down my system and allowed CFS to take hold of me. I'm not saying there is nothing viral there, just that stress weakened by body's defenses.

 

[Mithriel]

People did not want to say they had HIV because of the public assumption it meant you were sexually promiscuous.

Are we going to be afraid to say we have CFS because everyone will assume our parents were sexually or otherwise abusive?

Mithriel

 

[Cort]

What do you mean you don’t know what Reeves believes, Cort? He told the New York Times that he doesn’t believe that the CDC will be able to replicate the Mikovits findings. That’s what he believes. He also told them he believes ME/CFS is not caused by a pathogen, but rather caused by sexual and emotional abuse. That’s what he believes. If he believed ME/CFS were a “real” disease, do you think he would have funneled ME/CFS allocated money to other diseases? Of course not. So please don’t write that you don’t know where he stands here. His actions over the years have made it clear.

Would you please read what I'm writing. I wasn't referring to Mikovits. I was referring to Reeves and others theory that a buckled stress response plays an important role in this disease. Yes that could include sexual abuse but also infection, trauma, etc.. If you ever decide to look at the CDC's research you won't find alot of studies on psychological states, behavioral patterns etc. - you'll find the bulk of the research on neuroendocrine, gene, gene expression and immune studies. I'm sorry if this conflicts with yours and everyone else's ideas but it happens to be true. Its spectacularly easy to find out - just click on this link. I'm not saying that its the research I would have chosen - don't get me mixed up. Thats what the studies are- they're right there.

http://www.ncbi.nlm.nih.gov/sites/entrez

As Annette Whittemore told the New York Times in November, “I blame the CDC for most of this mess.” y

If you think that my reference to the CDC's research focus means I think the CDC is doing a good job - then you're mangling my words.

If it weren’t for Whittemore’s disgust with the CDC, the XMRV study would never have been done.

I think Annette Whittemore cared more about her daughter than whatever the CDC was doing!

I believe you misconstrued what I wrote: The CAA didn’t publicly humiliate Elaine DeFreitas; the CDC did.

I'm glad we got that cleared up. Whether you mean by that the CDC publicly humiliated her by disproving her study or said ugly things in public that were designed to humiliate her I don't know.

The CDC refused to follow Dr. DeFreitas’s protocols when it attempted to replicate her findings—that’s why it couldn’t replicate the study. The CAA should have chastised the CDC for these shenanigans through media stories—instead of hanging Elaine DeFreitas out to dry. When you sleep with dogs, you wake up with fleas.

Somehow you just don't get the fact that a UK group and a Japanese group tried to find a retrovirus and failed as well. That UK group is still there is and is still being funded entirely by ME patients. The fact is is that the research didn't work out! The CAA and others appear to have been right. How can you not agree with that? Why is this an issue at all?

I don’t doubt that sexual/emotional/physical abuse can screw up cortisol levels, and I don’t doubt that childhood abuse can lead to illness. However, do you see this kind of research being done on HIV or ALS patients or Alzheimer’s patients? Of course not. It would be a joke. That’s because these are considered physiological diseases, so research dollars aren’t wasted on this besides-the-point kind of research.

Agree with you there but there is the problem of numerous documented abnormalities in the stress response. I agree that its not a particularly strong area of research. I agree that the CDC has missed MANY opportunities; I agree that their program has underperformed dramatically. I do not agree that they're not chasing documented physiological abnormalities - they're there; I just do think that they matter that much. For what its worth neither does the CAA - again just look at the studies they're funding - brain, gastrointestinal, endoretroviral, muscle receptors; this is not the CDC's research!

Imagine, if you would, Reeves designing a study on whether Parkinson’s disease was caused by childhood sexual or emotional abuse. I mean, really. How long do you think he’d have his job? Reeves wants this kind of silly ME/CFS research so he can keep labeling the disease psychogenic. That’s what he’s devoted his career to trying to prove, and that’s why it’s being done.

Reeves is probably doing his research because, despite your aversion to it, studies on the HPA axis and ANS have proven fruitful; that is they've generally come up positive. He's following a trail - its not a strong trail - that's the problem. Its not significant, innovative making a difference research; its nibbling around the edges rather than tackling the problem head on. Thats my problem with it.

And he still has his job because many people who don’t have this disease believe that it’s psychogenic. And that’s because Reeves and company have done a fabulous job convincing them of this. But why are YOU condoning it? How can you see validity in this kind of research when so many of us are desperately ill?

Where in my message does you see me condoning a psychogenic interpretation of this disease? Where in my website do you see me doing that? I explained what I see the CDC's research focus is. I don't think its strong at all but its not 'invalid'; by that I mean its based on prior successful research.

I think the program should be redone completely. I think the CDC should focus on repeat exercise abnormalities, metabolic dysfunction, central nervous problems, vascular issues, natural killer cell problems, and of course XMRV (which they are) - all of which they've ignored in their focus on the HPA axis. Thats why I came out so strongly against them in my blogs.

As far as Dr. Vernon’s comments, they were inappropriate and misleading. Do the math: Vernon had two positive lines (including the first line) about the discovery, several paragraphs of neutral explanation about the XMRV study, and then one paragraph of 130 words criticizing the study. Any outsider reading would assume the study was deeply flawed, but it wasn’t. It was good science replicated by two stellar groups: the Cleveland Clinic and the NCI.

I urge you to read it again. I don't anything in XPlained that should bother anyone! Here it is: http://www.cfids.org/cfidslink/2009/110402.asp

That’s because the CAA is an organization owed and operated by the CDC.

Come on! Sorry to step over the bounds of decorum but that is just unreal. The CDC HATES the CAA; the CAA HATES the CAA - have you read anything in the past year. I don't know how in the world you can say that.

Imagine how things would be different today if the government had taken CFS seriously 20 years ago, the way HIV was. Many of us might have been able to lead the lives we wanted to live, instead of waiting to live. Because of good research and good drugs, HIV/CFS doc Nancy Klimas told the New York Times that most of her HIV patients are “hale and hearty.”

No arguments with that.

We need to stop supporting the CAA and support the kind of game-changing research the Whittemore Peterson Institute is doing.

All you have to do is look at the CAA's research to realize they are doing fine research; research that could impact each of us. Have you looked at ANYTHING I've written?; any link that I've posted or have you just decided that you've made up your mind? They're both doing good research. Of course the WPI is doing the most significant research now - no argument about that!

We need to stop sitting in the back of the bus—because if we don’t, nothing will change in our lifetime. We need to act up, like HIV patients did years ago. That’s how things change. After 20 fruitless years, haven’t we had enough?

No disagreement there. I haven't been sitting in the back of the bus.

 

[Cort]

Nobody disputes that stress can have an effect on any illness, and that the HPA axis has been found to be faulty, BUT people such as Vernon want to prove that it is stress that causes ME/CFS and you seem mighty keen to believe them and promote that view. Funny that.

Not funny at all Wanna Be Well. If you believe that Dr. Vernon believes stress causes this illness then you'll have trouble explaining why the CAA is funding studies (again) on

• lactic acid/mitochondrial problems in the brain
• the gastrointestinal metabiome
• nitric oxide and vascular problems
• endogenous retroviruses

and just completed funding work on

• epstein barr virus
• metabolic dysfunction and exercise

I don't see much stress stuff there -do you? If she or the CAA was trying to prove CFS was caused by stress they'd probably feature that in their research program wouldn't they? Well they're not - so hopefully you can drop that notion and find something else to take up with the CAA. Neither believes CFS is caused by 'stress'.