CAA is Listening

J

jspotila

Senior Member
Messages
1,099
Hi all,

I've received various questions about whether the Association staff actually reads emails sent to the office from several people on the forums, including teejkay most recently. Yes! is the simple answer.

The Association receives thousands of emails every day and the staff makes its best effort to direct messages to the person/people most capable of assessing and addressing issues that are raised. The volume of email, regular mail, and comments posted to Facebook profiles and discussion forums like this one (also read by staff members) make it impossible to respond to each one personally, but the input and feedback from supporters and others in the community are very important to staff and Board alike and we strive to be both aware and responsive.

Most recently, the Association added a FAQ page which is regularly updated on the website. The Spark! website was changed to remove some materials that some believed objectionable. Understand that the staff is very small and carrying a heavy workload, so not every email or request will be responded to personally. Both the Board and staff are reading and considering input from many sources.
 
J

jspotila

Senior Member
Messages
1,099
Thank you, teejkay, for asking the question. Allow me to clarify that this is not really "news" in the sense that the Association is changing how it reviews or considers input. I just wanted to respond to your (and others') question about whether we read email at all.
 
S

Samuel

Senior Member
Messages
221
Hi jspotila,

Still much more to do, even on the same page. Please see the CAA pamphlet thread.

Samuel
 
starryeyes

starryeyes

Senior Member
Messages
1,561
Location
Bay Area, California
We're lucky to have Jennie here. She's on the board at the CAA and she's listening intently to all of our suggestions and doing her best to pass them on to the CAA.

Thank you Jennie. :Retro smile:

tee
 
L

leelaplay

member
Messages
1,576
Hi jenny,

What a great title for the thread. I really hope you are listening. We need the CAA to represent us well.

Unfortunately, I writing because I'm outraged and appalled at the article on pacing that you recommend to members in the March newletters. This reflects so poorly on the CAA.

Please take a look at the CAA recommends, to me, questionable article on pacing. March 2010 for more information on what is so dangerously wrong with this article and the reactions of some of the forum members.

My wording was too kind – it is not questionable – it is dangerous unscientific nonsense that is selling the belief that all people recover from ME/CFS, and that pacing and attitude are the key tools to reaching recovery. They also recommend the lightening process, NLP................ and deny a biomedical cause or treatment.

What on earth is the CAA doing?

I really think you need to send out a retraction to all members, saying that an error was made, the CAA does NOT associate itself with the ideas in the article, and to withdraw the article from your library and sites.

If the CAA does agree with the ideas in this article, then members need to know that this is the position regarding ME/CFS that the CAA holds.

I don’t know what to say – I am disheartened, upset, and frankly disgusted that the CAA would associate itself with the ideas in this article, let alone recommend and link to it.

islandfinn
 
oerganix

oerganix

Senior Member
Messages
611
jspotila said:
Roy S, in what context?
Click to expand...

That is a typical "fudge" answer. It is not an answer at all. It should not be difficult to say: Yes, we are, in thus and such a way. OR No, we aren't and this is why...

So, again, is CAA working with WPI in any context?
 
fingers2022

fingers2022

Senior Member
Messages
427
islandfinn said:
Hi jenny,

What a great title for the thread. I really hope you are listening. We need the CAA to represent us well.

Unfortunately, I writing because I'm outraged and appalled at the article on pacing that you recommend to members in the March newletters. This reflects so poorly on the CAA.

Please take a look at the CAA recommends, to me, questionable article on pacing. March 2010 for more information on what is so dangerously wrong with this article and the reactions of some of the forum members.

My wording was too kind it is not questionable it is dangerous unscientific nonsense that is selling the belief that all people recover from ME/CFS, and that pacing and attitude are the key tools to reaching recovery. They also recommend the lightening process, NLP................ and deny a biomedical cause or treatment.

What on earth is the CAA doing?

I really think you need to send out a retraction to all members, saying that an error was made, the CAA does NOT associate itself with the ideas in the article, and to withdraw the article from your library and sites.

If the CAA does agree with the ideas in this article, then members need to know that this is the position regarding ME/CFS that the CAA holds.

I dont know what to say I am disheartened, upset, and frankly disgusted that the CAA would associate itself with the ideas in this article, let alone recommend and link to it.

islandfinn
Click to expand...

I agree with your sentiments islandfinn, and you have saiid it well.

Maybe this goes back to the problems of definition. Some of this stuff, one can understand, might work very well for people with predominantly psychological factors. Personally, I am relatively high functioning (althoughh only at 10% of pre-ME levels), but in spite of this, my main pitfall is doiing too much - no doubt due to my lack of self esteem ;). So, even for non-severe cases, GET, or increasing activity do not work.

Maybe well-intentioned, but the whole thing demonstrates a fundamental lack of understanding. I think where they're going wrong is in observing that some people recover from ME, and in doing so they gradually increase their activity. This ignores the fact that this group of people may have a different disease, and I believe this is likely. My personal view is that there's a subset of CFS/ME where recovery rates are 0%. There's another subset where recovery occurs, often through the likes of GET, Lightning Process etc. and that's a different disease, with a different cause.

We'll see.
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Are any ME/CFIDS cases caused by 'predominantly psychological factors'?

fingers said:
Maybe this goes back to the problems of definition. Some of this stuff, one can understand, might work very well for people with predominantly psychological factors. Personally, I am relatively high functioning (althoughh only at 10% of pre-ME levels), but in spite of this, my main pitfall is doiing too much - no doubt due to my lack of self esteem ;). So, even for non-severe cases, GET, or increasing activity do not work.

Maybe well-intentioned, but the whole thing demonstrates a fundamental lack of understanding. I think where they're going wrong is in observing that some people recover from ME, and in doing so they gradually increase their activity. This ignores the fact that this group of people may have a different disease, and I believe this is likely. My personal view is that there's a subset of CFS/ME where recovery rates are 0%. There's another subset where recovery occurs, often through the likes of GET, Lightning Process etc. and that's a different disease, with a different cause.

We'll see.
Click to expand...

I haven't seen any evidence that anyone's ME/CFIDS is caused by 'predominantly psychological factors.' When I say ME/CFIDS, I of course mean the unique disease with the characteristic unique presentation, ie Canadian definition ME/CFS. Obviously, the Oxford and Reeves definitions are so harmful because they muddy the science, diagnosis, scientific and popular literature and public and medical conceptions of the disease and sufferers. The only studies I have seen that suggest 'predominantly psychological factors' in the causation of any individuals' "CFS" are those studies that use the Oxford and Reeves definitions. Any study using these laughable definitions are prima facie invalid (invalid on their face). Period. This is why all of us and our patient organizations must make it very clear that these definitions are completely invalid and any study using them are invalid. end of story. This is why Dr. Vernon's comment that Oxford definition is 'accepted' is totally unacceptable.
Do you know of good evidence that ME/CFIDS can be caused by 'predominantly psychological factors.' I don't mean to attack you, just to root out if there is really any evidence.
 
oerganix

oerganix

Senior Member
Messages
611
jspotila said:
katieann, what facts are you basing this statement on?
Click to expand...

quote_icon.png
Originally Posted by Roy S
Is the CAA working with the WPI?



in a nutshell, an unequivicle(sp) no. "

Twice you've been asked whether CAA is working with WPI and twice you've responded with a question instead of an answer.

It has been said here that WPI has submitted proposals for studies, to CAA, and has been denied. Perhaps this is what katieann meant when she said "an unequivocal no"?
​
 
J

jspotila

Senior Member
Messages
1,099
I am not trying to be obtuse or difficult. There are many ways of working together besides funding research. To that point, here is what the Association FAQs say about the funding issue:

Did the CFIDS Association deny research funding to the Whittemore Peterson Institute for XMRV research?
Like most grantmaking organizations, our research policies preclude us from disclosing details about studies that were not approved for funding. This preserves the applicants ability to submit the study to another institution or to revise and resubmit on another round. It is possible to state that at the time of the Associations most recent Request for Applications (March 2008) there were no applications on the topic of XMRV and CFS.
Click to expand...

Both the Association and WPI share common goals - solving CFS - although we pursue that goal in different ways. But the Association cooperates with WPI in a number of ways:
- Dr. Vernon (CAA) and Dr. Mikovits (WPI) serve together on the XMRV task force
- The Association nominated Dr. Mikovits and Dr. Peterson to the CFSAC, as well as Dr. Donnica Moore (who recently became a spokesperson for WPI)
- Leadership at CAA and WPI communicate with each other on a variety of issues/topics
 
You must log in or register to reply here.
Back