CAA is Listening

[starryeyes]

Koan

 

[MEKoan]

Teej!

My dear friend, Teej!

thank you!

Koan

 

[fingers2022]

This old activist will be on the front-lines 'til the end.

Whether you want me with you, or no, I will be there.

Get used to me. I'm not going away until it's over.

Peace to all my lovely friends and all my lovely foes...

Koan

....and you once said that something I wrote was half-intelligent and witty (well that's how my ego interpreted your comments anyway!). OMG, what an honour!

Piece In

F

 

[justinreilly]

"Trust the Experts." ... you're kidding right?

Cort quoting someone's post:

My deepest concern is that Dr Vernon is nit-picking WPI's methodology, without showing even a professional level of critique for the severely flawed European cohorts/lab methods. Perception is everything, and to me, this unbalanced critique comes across as unprofessional, and unscientific, and indeed petulant. That Dr Vernon would openly and liberally critique WPI's methodology in the media, and yet remain so silent on the profound methodological flaws across the pond is appalling, and indeed a very poor reflection on her genuine appetite for scientific discovery and credibility, and her desire to help advance the field of science on ME/CFS.

This is excuse, me - pretty wild. Have some humility! She has spent 20 years immersed in this field. She has helped invent the field of gene expression. She is a professional. Like any professional she knows her field; like any amateur we don't a scintilla of the knowledge that she does. Instead of accusing her of being non-professional maybe it would be better to try to understand where she's coming from; trying to adjust your understanding a bit instead that you or I know better.

I realize that we think we've found methodological flaws but both Dr. Vernon's and Dr. Shepards silence on them is illuminating. Given the two - us or her - I'd bet on her!

Trusting the 'experts' like Dr. Reeves, Wessely et al. is what got us into this mess.

We should be able to trust the 'experts' and we all pray that we one day can. For me, this is the biggest betrayal and abuse- 'expert medical professionals' and 'scientists' warp the science or lie and as a result we are abused. Then the more determined and/or educated of us fight for years to figure out what the hell is going on. We have to become experts in the socio-political history of the disease, psychiatry and biomedical research to figure this out. This is an absolutely intolerable burden for people so sick with little or no support. I see it as scandalous that we sick amateurs have to review Dr. Vernon's work to make sure it's appropriate and scientifically sound!

 

[Sing]

Exactly, Justin! I am completely in accord with the points you make so eloquently.

Thanks.

Sing

 

[oerganix]

Trusting the 'experts' like Dr. Reeves, Wessely et al. is what got us into this mess.

We should be able to trust the 'experts' and we all pray that we one day can. For me, this is the biggest betrayal and abuse- 'expert medical professionals' and 'scientists' warp the science or lie and as a result we are abused. Then the more determined and/or educated of us fight for years to figure out what the hell is going on. We have to become experts in medicine, the socio-political history of the disease, biomedicine, psychiatry and biomedical research to figure this out. This is an absolutely intolerable burden for people so sick with little or no support. I see it as scandalous that we sick amateurs have to review Dr. Vernon's work to make sure it's appropriate and scientifically sound!

Exactly! Betrayal. That is the word that has been escaping me, but that is exactly how I feel when CAA comes out with more psych based "information" and Dr Vernon fails to apply scientifically rigorous criticism to the European studies but instead restates some of their invalid criticisms of the WPI study.

 

[oerganix]

OK, CAA, got any money lying around for public education? No? How about loads of publicity?
http://www.forums.aboutmecfs.org/showthread.php?3859-UK-documentary-What-about-ME

 

[Stuart]

"Trust the Experts." ... you're kidding right?

Trusting the 'experts' like Dr. Reeves, Wessely et al. is what got us into this mess.

We should be able to trust the 'experts' and we all pray that we one day can. For me, this is the biggest betrayal and abuse- 'expert medical professionals' and 'scientists' warp the science or lie and as a result we are abused. Then the more determined and/or educated of us fight for years to figure out what the hell is going on. We have to become experts in the socio-political history of the disease, psychiatry and biomedical research to figure this out. This is an absolutely intolerable burden for people so sick with little or no support. I see it as scandalous that we sick amateurs have to review Dr. Vernon's work to make sure it's appropriate and scientifically sound!

Justin! How dare you doubt our Experts! Why they have a stellar history (ignore the man paid millions to fake autism / vaccine research at the CDC!).

Just look at this evidence!

113,997 doctors can't be wrong!

Put that in your "T" zone! Damn I need a cigarette! And I don't smoke!

 

[justinreilly]

Stuart-

I'm glad Camel asked 'doctors in every branch of medicine.' I appreciate their thoroughness in getting me the best possible medical advice.

 

[justinreilly]

Jennie-

How and when are directors appointed? I checked CAA website but couldn't find any info.
Thanks.

 

[jspotila]

Jennie-

How and when are directors appointed? I checked CAA website but couldn't find any info.
Thanks.

The Board has a nominating committee which is charged with, among other things, seeking candidates for the Board. Typically, we draw from patient advocates (a certain % of the Board must be patients per our by-laws) and people who have relevant professional expertise (marketing, strategic planning). There is an interview process, and the committee presents nominees to the Board for election (or not). This election process is typical of many non-profits, both within health related groups and other contexts.

 

[justinreilly]

Board Perpetuates Itself

The Board has a nominating committee which is charged with, among other things, seeking candidates for the Board. Typically, we draw from patient advocates (a certain % of the Board must be patients per our by-laws) and people who have relevant professional expertise (marketing, strategic planning). There is an interview process, and the committee presents nominees to the Board for election (or not). This election process is typical of many non-profits, both within health related groups and other contexts.

Thanks, Jennie. A thought is that this tends to perpetuate board control and policy as opposed to allowing for change directly reflective of the desires of the 'membership'/ donors/ patients that would result from 'member'/donor/patient election of the board.

 

[jspotila]

Thanks, Jennie. A thought is that this tends to perpetuate board control and policy as opposed to allowing for change directly reflective of the desires of the 'membership'/ donors/ patients that would result from 'member'/donor/patient election of the board.

As I said, this election process is typical of many non-profits, and consistent with non-profit governance in general. I haven't personally investigated the by-laws of other CFS-related organizations, but I suspect that most (if not all) follow a similar structure.

 

[sunnyslumber]

To everyone I think I should mention a few points about which there is consensus and which may serve as a starting point for further discussion:

1.) The CFIDS Association missed a huge opportunity to publicize the WPI discovery and say "SEE! This is what we've said all along--that this is a biomedical and extremely severe illness!"

2.) The problem with mentioning CBT and other such therapies is not that they might have a small helpful effect on someone's outlook or well-being but it is that the people who promote CBT invariably use this as a jumping point for their hand waving arguments about how this is all in the mind. The two are practically equivalent to the scientists who study this in the psychiatric model, I don't know how anyone could research this and come away with a different conclusion. By mentioning CBT these person's researches are in a sense legitimized.

3.) All of the studies with CBT are almost all Oxford or Fukuda, suffice to say we should all be able to agree that for every "CFS/ME" patient there are many more with persistent fatigue in the Oxford Criteria. The Fukuda probably has a better ratio of real "CFS/ME" patients to patients who are merely burnt-out, sleep deprived and so forth. Additionally it is easy to see anyone with even Chronic Migraines could quite easily qualify under Fukuda.

4.) Due to the intermixing by the Fukuda, a relatively distinct group of patients (as some of the prominent Clinicians have said: "The same exact song all over again") and a group of patients who have real illnesses but not CFS we have come up with this disastrous paradigm that CFS is "heterogeneous" and then you can't make heads or tails of any research --since someone, a researcher or politician can always respond "Well it *is* heterogeneous."

5.) Assuming the WPI didn't exist, how would patients today be better off than they were ten years ago? There are no new treatment options from the CAA's research efforts as yet, and treatment is more or less the same area where it was a decade ago.

6.) Why won't the CAA just come out and say Fukuda '94 and Oxford '91 stink? I mean they should just say this is a different illness than described by those definitions and say that the closest thing we have to a real definition is the Canadian one.

* Not a consensus point but this is frustrating for me, why not take the psychiatric lobby head on instead of trying to outwit them as they seem like they are doing? Just tell them point-blank they are studying something different: "persistent fatigue" --it doesn't matter whether their findings would seem to help us or not, there is no need to cherry-pick the "biomedical ones", they are not relevant and therefore should be denied as research findings for CFS/ME.

 

[oerganix]

To everyone I think I should mention a few points about which there is consensus and which may serve as a starting point for further discussion:

1.) The CFIDS Association missed a huge opportunity to publicize the WPI discovery and say "SEE! This is what we've said all along--that this is a biomedical and extremely severe illness!"

2.) The problem with mentioning CBT and other such therapies is not that they might have a small helpful effect on someone's outlook or well-being but it is that the people who promote CBT invariably use this as a jumping point for their hand waving arguments about how this is all in the mind. The two are practically equivalent to the scientists who study this in the psychiatric model, I don't know how anyone could research this and come away with a different conclusion. By mentioning CBT these person's researches are in a sense legitimized.

3.) All of the studies with CBT are almost all Oxford or Fukuda, suffice to say we should all be able to agree that for every "CFS/ME" patient there are many more with persistent fatigue in the Oxford Criteria. The Fukuda probably has a better ratio of real "CFS/ME" patients to patients who are merely burnt-out, sleep deprived and so forth. Additionally it is easy to see anyone with even Chronic Migraines could quite easily qualify under Fukuda.

4.) Due to the intermixing by the Fukuda, a relatively distinct group of patients (as some of the prominent Clinicians have said: "The same exact song all over again") and a group of patients who have real illnesses but not CFS we have come up with this disastrous paradigm that CFS is "heterogeneous" and then you can't make heads or tails of any research --since someone, a researcher or politician can always respond "Well it *is* heterogeneous."

5.) Assuming the WPI didn't exist, how would patients today be better off than they were ten years ago? There are no new treatment options from the CAA's research efforts as yet, and treatment is more or less the same area where it was a decade ago.

6.) Why won't the CAA just come out and say Fukuda '94 and Oxford '91 stink? I mean they should just say this is a different illness than described by those definitions and say that the closest thing we have to a real definition is the Canadian one.

* Not a consensus point but this is frustrating for me, why not take the psychiatric lobby head on instead of trying to outwit them as they seem like they are doing? Just tell them point-blank they are studying something different: "persistent fatigue" --it doesn't matter whether their findings would seem to help us or not, there is no need to cherry-pick the "biomedical ones", they are not relevant and therefore should be denied as research findings for CFS/ME.

Excellent ideas, all. Especially this one, as I have said in other words, many times:

"2.) The problem with mentioning CBT and other such therapies is not that they might have a small helpful effect on someone's outlook or well-being but it is that the people who promote CBT invariably use this as a jumping point for their hand waving arguments about how this is all in the mind. The two are practically equivalent to the scientists who study this in the psychiatric model, I don't know how anyone could research this and come away with a different conclusion. By mentioning CBT these person's researches are in a sense legitimized."

 

[justinreilly]

To everyone I think I should mention a few points about which there is consensus and which may serve as a starting point for further discussion:

1.) The CFIDS Association missed a huge opportunity to publicize the WPI discovery and say "SEE! This is what we've said all along--that this is a biomedical and extremely severe illness!"

2.) The problem with mentioning CBT and other such therapies is not that they might have a small helpful effect on someone's outlook or well-being but it is that the people who promote CBT invariably use this as a jumping point for their hand waving arguments about how this is all in the mind. The two are practically equivalent to the scientists who study this in the psychiatric model, I don't know how anyone could research this and come away with a different conclusion. By mentioning CBT these person's researches are in a sense legitimized.

3.) All of the studies with CBT are almost all Oxford or Fukuda, suffice to say we should all be able to agree that for every "CFS/ME" patient there are many more with persistent fatigue in the Oxford Criteria. The Fukuda probably has a better ratio of real "CFS/ME" patients to patients who are merely burnt-out, sleep deprived and so forth. Additionally it is easy to see anyone with even Chronic Migraines could quite easily qualify under Fukuda.

4.) Due to the intermixing by the Fukuda, a relatively distinct group of patients (as some of the prominent Clinicians have said: "The same exact song all over again") and a group of patients who have real illnesses but not CFS we have come up with this disastrous paradigm that CFS is "heterogeneous" and then you can't make heads or tails of any research --since someone, a researcher or politician can always respond "Well it *is* heterogeneous."

5.) Assuming the WPI didn't exist, how would patients today be better off than they were ten years ago? There are no new treatment options from the CAA's research efforts as yet, and treatment is more or less the same area where it was a decade ago.

6.) Why won't the CAA just come out and say Fukuda '94 and Oxford '91 stink? I mean they should just say this is a different illness than described by those definitions and say that the closest thing we have to a real definition is the Canadian one.

* Not a consensus point but this is frustrating for me, why not take the psychiatric lobby head on instead of trying to outwit them as they seem like they are doing? Just tell them point-blank they are studying something different: "persistent fatigue" --it doesn't matter whether their findings would seem to help us or not, there is no need to cherry-pick the "biomedical ones", they are not relevant and therefore should be denied as research findings for CFS/ME.

Sunnyslumber,

All excellent points, I especially agree with your last point- the psych lobby's little trick- the Oxford definition- is the foundation (other than flat out lies and disingenous speculation passed off as fact) for all their nonsense. And the Oxford criteria are straight up idiopathic CF! Thus all their studies are totally invalid. These charlatan insurance lobbyists exist outside of science. End of Story. This is the central point that CAA needs to be hammering home, not going out of it's way to put a stamp of approval on.

re: # 5) It is a scary thought to think of what if WPI hadn't come along and all we had was CAA.

BTW this sort of discussion (rather than specific communication with Jennie) has moved over to this thread:
http://www.forums.aboutmecfs.org/showthread.php?820-Time-for-the-Big-Talk.-How-s-the-CAA-doing

I have posted a copy of your post and my response there.

 

[Angela Kennedy]

Excellent points, Sunnyslumber.

 

[WillowJ]

Why aren't these emergency rooms, these doctors and medical personnel, taking CFS seriously? The CDC has done its job of misrepresenting us, of diverting research funds, of giving us this horribly useless and stigmatizing name, of watering that down even further, and then of making light of, through Reeves, the most exciting research we've had in a decade. ...

... someone needs to stand up for us in the realm of public opinion and in the job of educating our doctors and health care providers. That won't happen as long as we keep getting saddled with any hint of ME/CFS being a psychological problem helped by psychological techniques. There will be plenty of time to focus on stress reduction later. The time right now is to put out an unequivocal message that we are dealing with a real disease that needs real medical support. Period. Otherwise, we will continue to have to hide from our own doctors the name of our disease so that they won't dismiss us in their haste to be rid of us. Emergency rooms will continue to be a dangerous place for all of us, no matter our current state of functioning.

that is so true

 

[WillowJ]

I think you can say the first one. You can't say the second one until you understand what causes this disease. Until then a dysregulation in the stress response is a candidate.

"second one" was

Stress plays no more of a causitive role in this illness than any other.

You can indeed say this, because "dysregulation in the stress response" is disease. Regardless of what the disease process is or isn't, it's not the stress itself that's causative. We all know that. So "stress plays no more causative role than in any other neurological and immune disease, such as multiple sclerosis, lupus, myasthenia gravis, and the like" is quite accurate and should be stated and emphasized and repeated. We should never ever loose an opportunity to emphasize this fact.

 

[WillowJ]

sorry, didn't mean to distract from ICD-10-CM, because that's important... carry on, please...