• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Cort

Phoenix Rising Founder
I don't think it says that! You'd have to say that all those other treatments they mention including the one many of us are putting our hopes in - Dr. Peterson - are bogus! Its just one of a group is it not?

Your statement that by including Dr. White in there with all the other practitioners - all of which are interested in a physiological interpretation of this disorder - the CAA is, I don't remember, making an existential mockery of this disease - something like that. The weight of those other researchers and physicians more than makes up for having Dr. White in there.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
Your statement that by including Dr. White in there with all the other practitioners - all of which are interested in a physiological interpretation of this disorder - the CAA is, I don't remember, making an existential mockery of this disease - something like that. The weight of those other researchers and physicians more than makes up for having Dr. White in there.

Hi, Cort. Now, is there some reason why the CAA cannot just remove Dr White from this brochure and be done with it? It seems like a no-brainer. Is there some reason they can't make changes? I'm confused.
 

Dolphin

Senior Member
Messages
17,567
I wonder if they would consider removing Dr. White??
I am not sure the context but I think no group should have anything to do with him.

Follow the link in my sig if you want to learn about his views. He's a bit different to Wessely in how he writes but his basic views are just as horrible in my opinion. Graded exercise (and graded exposure to chemicals (for MCS), graded reading for cognitive symptoms, etc) cures everything. Generally avoid giving supports in the meantime.
 

Dolphin

Senior Member
Messages
17,567
From the CAA: One theory about the cause of this hypocortisolism is that it occurs well into the course of CFS due to factors such as inactivity, sleep disturbance, chronic stress and deconditioning.
I think this is the good news about cortisol; that its possibly due to poor sleep, chronic stress, deconditioning and inactivity. Why is that a negative thing? Really sick patients can't sleep well, are very inactive - are deconditioned as a result of that and are obviously under chronic stress. That is the picture of severe CFS.

Note that there's nothing in there about psychological issues or poor coping. What is the matter with that?
Personally I think patient organisations should avoid using the D word (deconditioning) as much as possible especially in information to medical and health professionals. Deconditioning theories can very quickly taken over - as has happened the health systems in the UK, Belgium and the Netherlands. The Belgian rehab clinics had neglible effect on people's exercise tests and the people were working at the end and at follow-up. But still the clinics continue. As I say, deconditioning theories tend to stick.

It's too easy to think that patients problems are caused by deconditioning. I also notice some higher functioning patients can be a bit judgemental of more severely affected patients and can think their problems are due to deconditioning.

Very often these lower functioning patients are operating at their activity ceiling and the last thing they want to be told is that they need to exercise more.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Teej,

My brain is not working so well, so I am asking if I have gleaned the following info correctly:

The CAA is citing Peter White as one of their experts? And they are citing Graded Excercise Therapy as generally helpful for ME/CFS?

Thanks Teej and hope you had good holidays. Holidays do me in. ;)

Hi Mary. Yes that is correct and the CAA states that patients with CFS need CBT and GET in order to get better. "Blaming the patient has always been the easy way out." - William Cavanaugh and Valerie Fleet

http://www.ncf-net.org/forum/TowerPsychobabble-W07.htm

Tom K wrote: If people want to exercise, that's fine but I don't think professionals need to be told that it will help patients' sleep and pain, when I don't believe there's evidence for such statements in CFS. Doctors will naturally think exercise will do this; they don't need it re-inforced by a CFS expert.

Cort Wrote: Teejay - check this out - its the CAA's detailed critique of the CDC's program. (It was actually the most comprehensive overview of the CDC's program that anyone offered.)
http://www.cfids.org/temp/research-plan-response.pdf
http://www.cfids.org/advocacy/fy09-p...e-language.pdf

Thanks Cort, I finally had the brain power to comprehend this info you posted... gosh I hate brainfog... these look great. I am also pleased the CAA set up a letter template for pushing the HHS to implement the CFSAC recommendations. Now, I want them to change their educational literature and website so that they no longer promote the UK psychiatrists and Reeves' CBT and GET propaganda.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Okay, gang, all of your comments were just sent to the CAA, to Jennie Spotilla. I included the following note:

To Jennifer Spotila, CFIDS Association of America

Dear Jennifer,

Thank you for taking an interest in the current groundswell of conversation regarding the direction of the CFIDS Association of America. We appreciate the opportunity to express our concerns, and hope that they are addressed with sincerity and great care.

As promised, I am sending you links to the comments and responses that were made in venues other than the two that we know you’ve been watching, as well as a few emails that were sent to me with requests to remain anonymous. This is a lot of reading, but every comment is made in the hopes that it will be addressed, so it is my sincere hope that each and every one will be read and considered. If nothing else, it will give you some idea of the perception people have.

I think we all appreciate that you took the time to let us know that you were paying attention.

Sincerely,
Khaly Castle

This is great and even better that jspotila and (bjs?) joined our message board but fresh eyes was just told by the CAA that the CAA board members do not represent them.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Oh... I misremembered what I read then. Thanks for letting me know, cf.

I agree with you that their statement that the board members do not represent them means the board members don't represent the CAA on this message board. That's what I'm mad about. We were told they did. Read the quote with my post.

We're not demanding that they do any of those things and I would still see them as supporting us if they change their educational literature and website info on CFS.

I changed my post above to reflect the info you just gave me.

Fresh eyes gave us this info earlier on this thread:
The CAA wrote: While print and online courses were equally requested for continuing education credit opportunities, the online course resulted in 84% of the overall award certificates, compared to 14% for the print course. This remained consistent across all provider occupations: physicians, nurses, physician assistants, and allied health professionals.

http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract

This is really a bummer. This explains why health professionals are still badgering us about exercise like several of them did to poor Dr. Yes when he was on his bed in his nursing home. They did this to him right before Christmas. :(
 

Dr. Yes

Shame on You
Messages
868
From tomk:
It's too easy to think that patients problems are caused by deconditioning. I also notice some higher functioning patients can be a bit judgemental of more severely affected patients and can think their problems are due to deconditioning.

I hadn't really noticed this on the smaller forums and support groups I've looked into, so was very surprised to see a bit of it here in the last couple days. Most of them will on the one hand admit that they've "been lucky", but seem unwilling (perhaps afraid?) to think of the "unlucky" ones: 'there but for the grace of God go I'. Two simple concepts...

(1) that many fellow ME/CFS patients cannot exercise at all, or would be harmed if they attempted it, and

(2) that the vast majority of doctors/ PT's will not understand (or care) about the differences between "good" and "bad" exercise/activity,

...do not seem to register in them, and therefore they do not see why those patients are directly or indirectly harmed by the continued promotion of terms like CBT and GET. It seems that some people can only understand it if they've had a "baptism by fire" themselves. This makes me really sad.

Very often these lower functioning patients are operating at their activity ceiling and the last thing they want to be told is that they need to exercise more

I'm currently in a nursing home with a large physical rehab component. The only member of that department who understood my situation was a former professor of physical therapy who happened to have a family member with severe ME/CFS. When I once explained to her that in the last two weeks I just seemed to hit a 'glass ceiling' she said "that 'ceiling' is your CFS". I told her about my ongoing miseries with the rest of the staff and she smirked and replied: "You aren't going to get any understanding from any of them. Nobody teaches about this disease in their schools, or if they do they teach it wrong. The only way to get them to call off a graded exercise program is to 'take a fall' or something. That scares them about liability."

I couldn't believe a health professional was suggesting "taking a fall", but her point was clear: the risk of injury from a fall is less than the risk of injury from excessive exercise for an ME/CFS patient. (But actually, I've been in a hospital situation where I accidentally did fall, and was merely picked up and forced to keep walking...).

-------
ETA - I had written this hours ago and fell asleep with the computer on my lap until now... then just clicked submit, and only now do I see the posts by teej and others! Thanks for thinking of me, teej (~picture embarrassed emoticon here.~)

It does not bother me when it happened, it bothers me that it keeps happening.. And what bothers me most is that if I was to (somehow) find the stamina to write a concise version of my story, some of our outspoken fellow PWC and, I'm afraid, the CAA would only see my case as an isolated, "extreme" example, rather than an indicator of what's REALLY happening to so many of us.

Maybe we need to petition them about this, too?!? (You would think they've had long enough to find out on their own.)

p.s do you know if Khaly sent them posts from the 'CAA brochure/Peter White' thread?
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
jspotila wrote: At the risk of repeating myself from other threads, I think it is important for me to be very very clear. I am here as an individual who also serves on the Association's Board. I'm not here as an official go-between, although I am more than happy to be a conduit of information, questions, feedback, etc. I don't want my statements to be heard as official statements of the Association unless I'm actually making an official statement.

I'm just rereading this thread now and just read this. Okay. I just feel like the CAA basically was telling fresh eyes to go away and stop bothering them. That's how it came across to me. It would be better if they had said, "but we really appreciate your input," to her. Of course, they'd need to really mean it.
Earlier in this thread fresh eyes wrote: And lastly, re the lack of resources - would CAA consider taking on a volunteer media coordinator? I would love that job.

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

That's supportive! Thank you jspotila. :)


mvwu wrote:
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.

That's it exactly mvwu. Thank you for putting that into words. I've known it but couldn't articulate it. I feel that the CAA is pushing the neurosis label on us too at times in their CMEs on their website by promoting GET and CBT.

Then I read what Dr. Yes said:

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).

This proves that we are in for the fight of our lives.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
I think this is the good news about cortisol; that its possibly due to poor sleep, chronic stress, deconditioning and inactivity. Why is that a negative thing? Really sick patients can't sleep well, are very inactive - are deconditioned as a result of that and are obviously under chronic stress. That is the picture of severe CFS.

Note that there's nothing in there about psychological issues or poor coping. What is the matter with that?

The problem I have with it is that it reinforces the idea that CFS is a from chronic stress, deconditioning and inactivity. There's no mention of the fact that CFS causes major hormone dysfunction which is the real reason our cortisol among other hormones aren't working properly. And yes, this gets worse over time in most cases of CFS.


Cort wrote:
As I noted before Dr. Cheney, Dr. Klimas, Dr. Peterson, Dr. Bateman, Dr. Komaroff and other members of the Fair Name Campaign for CFS all agreed that trying to change the name to myalgic encephalomyelitis would be a disaster. Instead they all backed ME/CFS.

The official name for CFS in the US is CFS not ME/CFS. ME/CFS wasn't even a suggestion when, many years ago, the CAA changed their name to the CFIDS Foundation.

So if all the top docs in CFS backed the name ME/CFS why is it still CFS? And since that's the case, why isn't the CAA trying to do something about it? Also, the CAA still needs to be educating the medical world that ME is synonymous with CFS. But from reading their CMEs and their website I'm not sure they even believe this.

Cort wrote: The weight of those other researchers and physicians more than makes up for having Dr. White in there.

This is where we completely disagree. Others here have said it better than me in other posts on PR and it was something to the effect of: This is akin to putting David Duke's picture and propaganda on a NAACP information packet and then having the NAACP make statements that they agree with him and it turns out, fly over to see him and meet with him and endorse his work.

If you actually read what I wrote in the first post on my thread about one of the CAA CME packets you will see that they contradict themselves in it completely and betray us to the UK psychogizers' viewpoints.

CF wrote: My impression was that there were some changes in direction starting around 2007 which is after that literature was created.

Unfortunately the CME and other articles on their website are out for everyone to read.

Dr. Yes wrote: It does not bother me when it happened, it bothers me that it keeps happening.. And what bothers me most is that if I was to (somehow) find the stamina to write a concise version of my story, some of our outspoken fellow PWC and, I'm afraid, the CAA would only see my case as an isolated, "extreme" example, rather than an indicator of what's REALLY happening to so many of us.

Maybe we need to petition them about this, too?!? (You would think they've had long enough to find out on their own.)

p.s do you know if Khaly sent them posts from the 'CAA brochure/Peter White' thread?

I don't know if Khaly did yet or not. ((((((((((((((Dr. Yes)))))))))))))) You deserve a hug for all you have been through!

Some of us will be in your shoes one day and I can only hope and pray that our patient organization, the CAA, will have made the changes necessary to truly support us. If one of us is being mistreated this way, then we all are. I hope things change asap with those medical personnel for you Dr. Yes.
 
M

mvwu

Guest
A Win for Patients, A Win for the CAA

Good morning, Jennie (aka JSpot :)),

Thanks again for being here.

If Fresh Eyes is volunteering to be an unpaid media coordinator, I think the CAA should jump on her offer. Her posts show her to be a bright, cooperative, hard-working and extremely talented PR specialist who knows the ME/CFS literature. If indeed, as you indicated earlier, the CAA is using most of its available dollars for research, Fresh Eyes could update the media program (which badly needs it). And it sounds like she would do it for free.

My guess is that the CAA has lost patient financial backing in the last year -- because of the recession, because patient contributions are being directed to the WPI, because Hillary Johnson made a strong public attack and because of the concerns expressed here and on Facebook that the CAA does not listen to patient feedback. I'm with Cort in that I do not want the CAA or its planned research program to die, so I've been trying to think of ways to encourage the CAA to streamline, update, and correct the parts of its advocacy message that are turning people off. Until I read Fresh Eyes had volunteered herself, I had came up empty. Once you let patients know there is a new gal (I think she is a gal) on board with the enthusiasm and ability to better reflect patient concerns, I think there is a good chance that patient funding levels would improve. Perhaps markedly.

The CAA wins, the patients win. What is not to like?
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
@ mvwu, teej & charity - :eek: *blushing*

Thanks for your support, friends. We'll see what they say. But, guys, let's not wait for them, OK? There are all sorts of great advocacy ideas & projects sprouting up on this forum and I think we can move forward effectively on our own as well. Web 2.0 (social media etc) makes it well within our reach.

* XMRV Global Action
* Levi's draft Joint Resolution
* Kim's educational program for pre-med students
* Katie & teej's YouTube video w/Cinderkeys' song
* the Brochure thread

* Others I've forgotten? Anyone?

(ps Yeah, I'm a gal. :D)
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Yay fresh eyes. Well I'm glad you saw our support for you here. :)

That's a good list. Can you start a new thread with that as the Title Post or is did you already put that list somewhere else as well?

tee
 

Dr. Yes

Shame on You
Messages
868
mvwu:

(I think she is a gal)

Fresh eyes is a BABE.

Fresh eyes: You see? If you had changed your name to "freshie", this sort of thing wouldn't have happened.

:D


p.s - Teej- ((((((thanks:)))))))
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
@ Dr Yes - Oh, you.

@ everybody - New thread to coordinate advocacy projects is up!
Titled, perhaps unsurprisingly, "Let's coordinate our current advocacy projects."
Under Advocacy.
See you there. ;)