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

[fresh_eyes]

Hi Cort. Thanks for chiming in on all this. It sounds like you are pretty discouraged about the lack of research and funding, which is totally understandable - I do think, though, that if there's ever been a time when we *might* be able to change the playing field, it's now. ACT UP did it with AIDS. (And that was before the cause of AIDS was known.) Maybe we can do it, too.

Re the ERV study above, is that Dr Huber?

 

[gracenote]

the time to act is now, I think

I also think the time to act is now. I don't think we need to wait for all the confirmation studies. I don't think it really ultimately matters that some will test positive for XMRV and some negative. Can't we make the case for "where there's smoke, there's fire"? Haven't enough studies been done to show that enough is haywire physiologically, and that there are a lot of similarities between XMRV plus and minus, that even if XMRV doesn't pan out to be THE cause to explain everything for everybody, it still shows that something is going on?

I feel VERY inarticulate about this, but don't we have enough "evidence" to build a circumstantial case? I think we need to sift through the current studies for the few nuggets of "proof" to show that "unknown cause" is just that — still perhaps unknown, but obviously there is something. Enough something to make a strong case. If XMRV is not everything, then why the heck are you (everyone who should be) not looking for what else might be?

Okay, I feel better now.

 

[Mark]

I agree! CFSOUT!
No more inappropriate illness beliefs!
Do we need a retroviral positive to claim our dignity?

 

[fresh_eyes]

I agree! CFSOUT!
No more inappropriate illness beliefs!
Do we need a retroviral positive to claim our dignity?

Hey, Mark, don't forget to put "innapropriate illness beliefs" in quotation marks!

Found this in my search for info on diseases once thought to be psychosomatic.

http://waltz.blogspot.com/2007/08/nobel-prize-in-medicine-2005.html

A highlight, from the Nobel Prize winner who proved h.pylori causes ulcers:

To quote historian Daniel Boorstin: The greatest obstacle to knowledge is not ignorance; it is the illusion of knowledge. The relevance of his quotation is that in 1982 the cause of peptic ulcer was already known...Thus, when Helicobacter was revealed, doctors were not looking for a new cause of peptic ulcer, that territory had already been taken by the illusion of knowledge.

Can't wait to hear what Mikovits has to say when she accepts her Nobel.

CFS OUT!

 

[Mark]

Hey, Mark, don't forget to put "innapropriate illness beliefs" in quotation marks!

Sorry fresheyes, I was intending to suggest that the doctrine of "inappropriate illness beliefs" is an inappropriate illness belief. I stand corrected.

CFSOUT!

No more "inappropriate illness beliefs" !


No more inappropriate beliefs about our illness !



"The greatest obstacle to knowledge is not ignorance; it is the illusion of knowledge."

(Daniel Boorstin)
​

 

[fresh_eyes]

Sorry fresheyes, I was intending to suggest that the doctrine of "inappropriate illness beliefs" is an inappropriate illness belief. I stand corrected.

D'oh! I stand corrected! Should have known you were a couple steps ahead of me.

CFSOUT!

No more "inappropriate illness beliefs" !


No more inappropriate beliefs about our illness !



"The greatest obstacle to knowledge is not ignorance; it is the illusion of knowledge."

(Daniel Boorstin)
​

Excellent use of color.

 

[Mark]

Cheers, just a sketch for your consideration

D'oh! I stand corrected! Should have known you were a couple steps ahead of me.

Nah, I'm dragging along behind as usual

 

[Dr. Yes]

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.

Generally that is true, mvwu, but prepare to be appopriately horrified:
Although I still don't have the stamina to tell even my recent story in any detail, let is suffice to say that I was stuck in a hospital last year where the prevailing notion (among the shrinks) was that I had "delusions of medical illness", not mere neurosis. They believed that CFS is a psychosomatic illness through-and-through, and that in order to have such fixed beliefs for so long (to the extent that one could be as disabled as I am) requires the transition from typical neurotic thinking to delusional thinking, i.e. sufficiently disconnected from reality to qualify as psychosis. And then things got REALLY ugly. More on that soon (I hope).

I should add that during hospitalizations for various infections immediately following that time I was seen by psychiatrists at other hospitals (two heads of psychiatry in their hospitals and one resident who had, coincidentally, done a fellowship with Nancy Klimas!) All three of them, plus the psychiatist at the Adult Home and the chief one over here at the Nursing Home, all expressed disbelief at the way I had been treated at the previous hospital and called the latter's diagnosis "ridiculous". None debated the physical reality of CFS and in fact the one over here insisted that it is a physical disorder with clear autonomic dysregulation. Of course, the resident who had worked with Klimas was extremely understanding, knew the research, but warned me that most psychiatrists simply do not have the training nor sufficient interest to understand CFS for what it really is. He said that he would be the same way today if it hadn't been for his work with Klimas.

Maybe I just got the worst possible draw on doctors, but that whole department was of the same opinion, and they could not have arrived at such a theory in a vacuum. They were training residents and medical students (using yours truly as a case study), so I fear for the future generations of doctors and psychiatrists if these bizarre medical beliefs are not challenged.

 

[MEKoan]

Hey Dr Yes,

I'm sure you are far from the only one to whom this kind of iatrogenic torment has happened. Once psychiatry has you in its grip, if you don't fit a box precisely, psychiatry will try to find a psychiatric box into which you will fit and be quite imaginative in the process. Psychiatry is dangerous that way. It's very malleable.

Examples do not spring readily to mind but there have been a number of journalists who have gotten themselves admitted to psychiatric hospitals in order to report on conditions only to find it very difficult to prove their sanity and get themselves sprung.

It's a damn good thing you were able to escape but I don't know how you will heal in the noisy, stressful environment you are in now! It's a fire/frying pan kind of situation except you were able to jump from the fire into the frying pan.

Ah well, step by step...

Koan

 

[fresh_eyes]

Heh, fresh_eyes found my blog. I also think if the XMRV research turns out that it does have a chance at the Nobel Prize... in 20 years. I even thought about writing to the two H. pylori/ulcer researchers for help... ah, desperation.

Charity! That's you?? Awesome!

I had the same thought about contacting the h. pylori geniuses...Hmm...

ETA ps I think your thoughts on the L&L Society should be on the new "XMRV Network" Facebook page thread too, so I put a link to your post over there.

 

[mvwu]

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.

Generally that is true, mvwu, but prepare to be appopriately horrified:
Although I still don't have the stamina to tell even my recent story in any detail, let is suffice to say that I was stuck in a hospital last year where the prevailing notion (among the shrinks) was that I had "delusions of medical illness", not mere neurosis. They believed that CFS is a psychosomatic illness through-and-through, and that in order to have such fixed beliefs for so long (to the extent that one could be as disabled as I am) requires the transition from typical neurotic thinking to delusional thinking, i.e. sufficiently disconnected from reality to qualify as psychosis. And then things got REALLY ugly. More on that soon (I hope)....

Maybe I just got the worst possible draw on doctors, but that whole department was of the same opinion, and they could not have arrived at such a theory in a vacuum. They were training residents and medical students (using yours truly as a case study), so I fear for the future generations of doctors and psychiatrists if these bizarre medical beliefs are not challenged.

Trust me on this, Dr. Yes, I am indeed horrified and then some. "Delusions of physical illness" indeed. I am so sorry. How humiliating. (If you were NOT humiliated by this, you are made of stronger stuff than I). How infuriating. And how incredibly ignorant of those doctors.

The horror story you posted on the 17th on the "Design a Brochure" thread inspired me to read the new "Psychiatric view of ME/CFS" thread. Over there, Orla does a exceptional job of helping us understand the bizarre irrational belief system of the worst of the pro-CBT/GET psychiatrists. Good, though disturbing, to know what is going on in their heads. TomK then adds some relief by posting a link to a recent literature review by Twisk and Maes. Theirs is an excellent article which makes clear that it is those particular psychiatrists, not CFS patients, whose thinking patterns need modification.

(BTW, I believe that is the same article Kim -- bless her soul --is about to foist on your current medical practitioners.)

My very best to you, my extremely sane friend. May things start looking up in your world.

 

[Samuel]

Examples do not spring readily to mind but there have been a number of journalists who have gotten themselves admitted to psychiatric hospitals in order to report on conditions only to find it very difficult to prove their sanity and get themselves sprung.

The Rosenhan experiment. (David Rosenhan.)

Also this other one is relevant:

Twenty-five psychiatrists were split into two groups. They
all listened to a tape of an actor acting in the picture of
mental health, but one group is given the preamble that the
person on the tape, "was a very interesting man because he
looked neurotic, but actually was quite psychotic." The
control group wasn't told anything. The two groups of
psychiatrists were asked for a most likely diagnosis based
on the tape. --

No one in the control group diagnosed psychosis, but in the
experimental groups given the preamble, diagnoses of
psychoses - most commonly schizophrenia - were made by 60
per cent of the psychiatrists. --

_Heart Failure_

 

[Dolphin]

The horror story you posted on the 17th on the "Design a Brochure" thread inspired me to read the new "Psychiatric view of ME/CFS" thread. Over there, Orla does a exceptional job of helping us understand the bizarre irrational belief system of the worst of the pro-CBT/GET psychiatrists. Good, though disturbing, to know what is going on in their heads. TomK then adds some relief by posting a link to a recent literature review by Twisk and Maes. Theirs is an excellent article which makes clear that it is those particular psychiatrists, not CFS patients, whose thinking patterns need modification.

Thanks mvwu. The thread is at: http://forums.aboutmecfs.org/showthread.php?t=1843 for anybody interested - I even put it in my sig. Orla has put together a great series of posts with lots of quotes to show the views.

The Twisk/Maes article can be got by filliing in your E-mail address at: http://node.nel.edu/?node_id=8918 , you can also download it from: http://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf

 

[fresh_eyes]

Yeah, funny seeing it linked here. I have a few other "WTF doctors" blog posts. Here's another one:

Do babies feel pain during surgery without anesthesia? Um...

P.S. Could you tell me how to find the "XMRV Network" discussion you mentioned? I couldn't find it.

Thanks for the link, Charity. I'll check that out.

That discussion is under XMRV > Media > XMRV International Advocacy Strategy. (Maybe not the best place for it?)

ETA re your link: OMG. WTF????

 

[Stuart]

REF: The Effect of CMEs, Toolkit, and Literature heavily citing CBT/GET

This is relevant to the thread here but I don't want to cross post it.

I think the convention is to refer to it in a link:

http://forums.aboutmecfs.org/showpost.php?p=26492&postcount=21

The CAA has supported the Reeves definition and has given much credence to CBT/GET, it is in the CME, Toolkit, and literature. Check it out.

 

[starryeyes]

Thanks for posting this Stuart. The CAA has been against us all along but why has it been so hard for us to find this information?

They don't represent me or anyone I know with ME/CFS. They just don't. I also feel that they've lied to us about this. Maybe they haven't, maybe they've just been silent about betraying us in the biggest way they possibly can. Either way they don't represent patients with ME/CFS. They're one of the biggest problems we have.

Stuart wrote: I would really like to see new CMEs, “Toolkit,” and glossy slicks (or PDF), that is citing the “other” research that the CDC likes to avoid; you know the physiological kind, with tests – and physical symptoms.

Yeah that would redeem them. I hope they see this and I hope they realize they are totally responsible for how millions of people with CFS are being mistreated by everyone in their lives especially the medical profession.

 

[Dr. Yes]

Well, luckily teej, if we are to listen to Ken Friedman and others, very few doctors have really bothered to look at the CAA brochures, etc so there's still time for them to change 'em!! Best to first PM jspotila and bjs, I guess. I would hope that they haven't seen this stuff and would be just as outraged as and demand a total overhaul of this literature from their fellow boardmembers.

Right, jspot and bjs???

 

[hvs]

http://forums.aboutmecfs.org/showpost.php?p=26492&postcount=21

The CAA has supported the Reeves definition and has given much credence to CBT/GET, it is in the CME, Toolkit, and literature. Check it out.

Wow. This is shocking. I've never seen this before.

It states that diagnosing CFS is mainly about waiting for six months to see if someone gets better, sending them for a mental heath evaluation, etc. etc.

NO mention of NK cells, RNaseL status, VO2 max, characteristic brain scans, etc.

The "Care" section list "validating" people, counseling, massage and such, and CBT!

Where are the world's two longest-standing non-quack CFS practitioners, Peterson and Cheney??

This pamphlet is an outrage, and, in stating that there is little to no way to directly diagnose CFS and in implying that there is little to know way to go after the disease (via secondary infections) lends credence to all of those who want to suggest that CFS is a pattern of "unwellness" or "tiredness" for which there is little evidence of anything. --This is the sort of thing that leads to patient suicides and children being removed from their parents. This is the sort of thing that keeps us from receiving research funding.

 

[MEKoan]

This song keeps going through my head.

http://www.youtube.com/watch?v=IHH8bfPhusM

 

[jspotila]

It states that diagnosing CFS is mainly about waiting for six months

The six month period is a key part of the 1994 Fukuda criteria, and that criteria is the most commonly used in the US.

NO mention of NK cells, RNaseL status, VO2 max, characteristic brain scans, etc.

Many CFS clinicians do not run these tests because they are not validated diagnostic criteria, nor do they affect patient treatment. Dr. Cindy Bateman made this comment in her talk on XMRV earlier this month.

The "Care" section list "validating" people, counseling, massage and such, and CBT!

Here is what the Association says about CBT:

CBT will not cure CFS, nor will it alleviate all symptoms for people with the illness. CBT does not address controversies surrounding the origins of CFS. It is simply intended to assist the individual to better manage the illness.

Where are the world's two longest-standing non-quack CFS practitioners, Peterson and Cheney??

The Association relies on information and input from many CFS practitioners, including Drs. Bell, Bateman, Levine, Peterson, Komaroff, Lapp, Klimas, and many others.

I posted more info about our stance on the CDC provider education, etc. over here: http://forums.aboutmecfs.org/showpost.php?p=26614&postcount=40