CAA recommends, to me, questionable article on pacing. March 2010

[oerganix]

Nobody is accusing you of creating the disease, but you MAY have some control. Just maybe. Why not keep that possibility open? The only other option is to do nothing waiting for a viral solution that may never come. I sure wouldn't want CAA to advocate that.


Maybe. But which egg? Do you really want to bet your life on the viral one without knowing which is truly golden?

Oh but they ARE accusing us of creating this disease! And they are accusing us of perpetuating this disease state by not having faith that we can think our way out of it. They are offering the illusion that we have total control of this disease and if we aren't cured by positive thinking and exercise it is OUR FAULT, because there is no organic cause. This is classic snake oil. "Buy our theory and become well. If you don't get well, you didn't completely buy our theory and so it's your fault you are not cured." Circular "reasoning" at its worst. GET/CBT in CFS/ME has been thoroughly discredited, so there is no valid reason for it to be in the MARCH 2010 issue of CAAs newsletter, disclaimer or not.

There are many things CAA could do between the extremes of simply waiting for a viral explanation, which no one is advocating, and the opposite end of the spectrum, which is reprinting articles and links to the Wessely school of "its all in your head", which is really all that the whole Howard schtick has to say.

 

[Robin]

Nobody is accusing you of creating the disease, but you MAY have some control. Just maybe. Why not keep that possibility open? The only other option is to do nothing waiting for a viral solution that may never come. I sure wouldn't want CAA to advocate that.

It's not clear that supplemental psychological treatment is helpful.

From a cochrane review meta-analysis on CBT:

The review showed that people attending for CBT were more likely to have reduced fatigue symptoms at the end of treatment than people who received usual care or were on a waiting list for therapy, with 40% of people in the CBT group showing clinical improvement, in contrast with 26% in usual care. At follow-up, 1-7 months after treatment ended, people who had completed their course of CBT continued to have lower fatigue levels, but when including people who had dropped out of treatment, there was no difference between CBT and usual care.

It can be argued that the minor benefit is placebo.

It's not clear that CBT is safe:

Very few studies reported on the acceptability of CBT and no studies examined side effects.

Like always, the Cochrane review recommends more research.

I agree that this stuff has no business being in CAA literature. The evidence isn't there and honestly no more money should be wasted on studying it.

 

[starryeyes]

I read somewhere that the membership numbers of the CAA are nothing like what they used to be. I am sure if that is true (I have no independent verification of this) your board is trying to do things to right the ship and get back on course and I don't think that will ever fully happen without a way for people to feel like they are involved and they have a say in how they are represented. A volunteer program would be a great way to do this. Even if it is as simple (no background check no training needed, minimal time commitment on both ends) as having a [CAA] volunteer focus group put together that would get articles and press releases in advance (by as little as a few days even) and give you feedback. That could help avoid messes like this and previous ones.

I totally agree with this.

 

[PoetInSF]

I accept that the organisation is run by very sick people who are trying hard but the present situation is like someone being considered a good husband because he only beats his wife up once a year. One bad thing negates dozens of good things.

He does not have one wife. He has thousands and he is trying keep them all happy all the time. An impossible task if you ask me. The best he can hope for is to keep most of them happy most of the time.

 

[oerganix]

For people who reported postive experience, there are people like Mary Schweitzer who had servere side effects with no improvements. I wouldn't want CAA to engage in chronicling annecdotes just for the sake of blancing out. They should leave that job to sites like this. Instead, if there is enough credibility in Vistide for CFS, they, or somebody else, ought to sponsor a clinical trial. (I'm sure Vistide mfg would be interested in funding if they think they'll make money off CFSers).

Re: Mary Schweitzer, what are you referring to? Her submission to the DSM review committee contains this quote: "I have been helped greatly by an experimental immune modulator, only to
relapse when permission from FDA to have the drug was removed."

 

[jackie]

And THIS!...."often the lack of listening to or trusting the body, in part may have led to the development of the illness in the first place."
And THIS...referring to "Blips"...not to be "blown out of proportion" or "feared"!

I'm actually a pretty positive (and up-beat) person...as attested to by MOST of my posts!
BUT...I invite "Howard" to experience one of MY "Blips" (or Shanes, or LaurelB's, or DB's, or Lily's, or Dr. Yes's!...or on and on!)...and NOT have "fear"! (and I'm not kidding!)

Once again...I don't want to see articles such as this, readily available AND advocated to those that would be happy to put the "period" to my "LIFE"....and then move on.

Having to "fight" for this one small thing...takes so much from many of us..but I'll continue to do so and protest - because it's all that's left for me to do.

j

 

[Dr. Yes]

Jennie,

The article which the CAA has decided to leave on their site contains the following:

Most common reasons you avoid doing more than you can:

* You simply didn’t believe it was possible to do more – you’ve been ill for so long you “think like a sick person”, even though your body is actually stronger than you realise
* You’re afraid of re-experiencing traumatic incidents from the past where your body was weaker and genuinely “let you down”
* Your illness may allow you to avoid certain life circumstances that are painful or scary to face – getting better means you must face them
* You don’t know what you want to do in life – you’re not sure yet of your “raison d’etre”
* Being numbed out and disconnected from your body and heart/true feelings, which want to do more, but you are living in their head and not listening to these messages

(Bolds by cfs since 1998)

As well as this:

Signs you are chronically not doing enough:

* No gradual incremental improvement is occurring – recovery is static
* No blips are experienced
* Lack of real commitment to see how you could do more, or following through on professional advice (lack of compliance)
* Using supplements or other therapies as a way to rationalize to yourself you are doing all that you can to get better, but really this is “going through the motions” and allows you to avoid facing real emotional issues underneath

And it is written by a guy who says the following in the third video on his site:

"The second thing we're looking at is dealing with our emotional background.. we're talking about our predisposing factors - these are our achiever tendencies, or our helper tendencies.. almost like the behaviors that were there in the first place, which then led in time to the development of ME."

(Bold mine)

How in all the hells can the CAA find any of this acceptable? And having had it brought to their attention, all they see fit to do is leave it up there with a limp disclaimer, as if they don't have the power or desire to remove it and issue a retraction?

I asked before, and I am forced to ask again: Are the statements above - any of them - consistent with the CAA's position? If not, aren't they in fact the opposite of the CAA's position? And if that is the case, why does the CAA feel that it is appropriate to leave the article on their site in any form, instead of taking it down and issuing a strong retraction for the benefit of those who already read the newsletter?

And Cort -
I urge you to look at the quotes above and ask yourself if you really feel they describe you or ANY subset of CFS.

p.s. Jennie - Again, I don't want you to think my criticisms are directed at you personally. :worried:

But it is SO frustrating to me that the CAA found the resources to publish favorably about a psychobabbler who minimizes the full physical impact of the illness but not about any of the issues I and others mentioned earlier, for example the hostility of Medicaid to the CFS diagnosis, or the importance of wheelchairs to incapacitated CFS patients.

Don't you feel the passages from Howard quoted above are indefensible? Any one of them should have been enough to prompt the CAA to issue a retraction, regardless of any other statements that may have sounded good (and there were some, but it's ridiculous to ignore their ideological context!) I really cannot understand why there should be any argument here.

 

[PoetInSF]

Re: Mary Schweitzer, what are you referring to?

Check out the 2nd para from the bottom of: http://www.cfids-me.org/mystory.html

 

[CBS]

Jennie,

<snip>

How in all the hells can the CAA find any of this acceptable? And having had it brought to their attention, all they see fit to do is leave it up there with a limp disclaimer, as if they don't have the power or desire to remove it and issue a retraction?

<snip>

p.s. Jennie - Again, I don't want you to think my criticisms are not directed at you personally. :worried:

But it is SO frustrating to me that the CAA found the resources to publish favorably about a psychobabbler who minimizes the full physical impact of the illness but not about any of the issues I and others mentioned earlier, for example the hostility of Medicaid to the CFS diagnosis, or the importance of wheelchairs to incapacitated CFS patients.

Don't you feel the passages from Howard quoted above are indefensible? Any one of them should have been enough to prompt the CAA to issue a retraction, regardless of any other statements that may have sounded good (and there were some, but it's ridiculous to ignore their ideological context!) I really cannot understand why there should be any argument here.

Jennie,

I have to agree with Dr. Yes. This is in no way personal but anything short of a retraction and removal is simply unacceptable.

Go ahead and write (or accept) an article about pacing and prioritizing emotional/mental health but do not stand by this dangerous mixture of myth and wishful thinking presented as useful advice propagated - and in publishing - endorsed by the CAA.

It is on your site, a disclaimer makes no sense. If anything it makes the CAA look weak, confused and ineffectual (not what patients or the CAA needs right now). It is past time for the CAA to take a long look at how these types of issues are presented. I'm not asking that you ignore anything, but the CAA is representing me as a CFS patient and I'm not the least bit pleased by an article with so much potential for harm.

 

[jackie]

Requesting again, that the "article" be removed from the CAA site in it's entirety...with an explanation as to why it's being removed. Nothing less will do. j

 

[kurt]

MODERATOR - This is a complicated topic and I am noticing a lot of CAA-Bashing over parts of an article they did not originate. Yes, CAA put that article in their newsletter, probably because they saw some things they thought would be helpful (pacing), but they list Howard as author, and he is not a CAA employee. CAA is one of our few advocates and funds important CFS research. If members want to debate or argue points made by Howard, or express negative opinions about what he said, please be clear when you are talking about Howard and when you are talking about CAA. I think it is safe to say that CAA agrees with the majority opinion here about the risks of attributing ME/CFS to psychological origin, and it is unfair to them for people to make sweeping generalizations from the comments of a guest writer who they probably could not tell exactly what to write.

If you have suggestions for CAA, please send them to CAA.

One other point, PLEASE be sure to state your opinion clearly as opinion, and not fact. Statements of fact that damage CAA's reputation (or anyone's) that can be proven false are considered libel and we are required to remove them. That takes time and moderators do not have time to police every post so again, PLEASE when you are sharing a negative opinion, make sure it is clearly stated as 'in my opinion'. If you believe a post has included false or libelous statements please report it to the moderators for review. This applies to people on all sides of this debate of course.

THANKS.

 

[Dr. Yes]

Having to "fight" for this one small thing...takes so much from many of us..but I'll continue to do so and protest - because it's all that's left for me to do.

You're right Jackie. And it seems that at the same time that we keep having to fight the excessive influence of behavioral treatments on CAA literature, we also have to keep arguing for more emphasis on the more severely ill among us, for recognition and investigation of the powerful socioeconomic factors that affect many of us, for a stark and accurate depiction of the frightening disability this disease can impose.

Instead of an article by Howard, why not full quotations from the Canadian Consensus document? Or from any number of other responsible practitioners... But please, CAA, don't help promote this guy!

 

[Lily]

Having a "blip"......

Requesting again, that the "article" be removed from the CAA site in it's entirety...with an explanation as to why it's being removed. Nothing less will do. j

Yeah, having a "blip" and don't have any fight left in me, so thank you all - Jackie, Dr. Yes, Shane, Oerganix and the rest........don't give up, please don't give up.

 

[Denn]

MODERATOR - This is a complicated topic and I am noticing a lot of CAA-Bashing over comments they did not originate. Yes, CAA put that article in their newsletter, but they list Howard as author, and he is not a CAA employee. CAA is one of our few advocates and funds important CFS research. If members want to debate or argue points made by Howard, or express negative opinions about what he said, please be clear when you are talking about Howard and when you are talking about CAA. I think it is safe to say that CAA agrees with the majority opinion here about the risks of attributing ME/CFS to psychological origin, and it is unfair to them for people to make sweeping generalizations from the comments of a guest writer who they probably could not tell exactly what to write.

If you have suggestions for CAA, please send them to CAA.

Kurt--what you say is true but it is up to the CAA not to publish articles with misleading or false content. If they do, then it is not beyond the ken for them to be held responsible for the content.

Denn

 

[CBS]

MODERATOR - This is a complicated topic and I am noticing a lot of CAA-Bashing over comments they did not originate. Yes, CAA put that article in their newsletter, but they list Howard as author, and he is not a CAA employee. CAA is one of our few advocates and funds important CFS research. If members want to debate or argue points made by Howard, or express negative opinions about what he said, please be clear when you are talking about Howard and when you are talking about CAA. I think it is safe to say that CAA agrees with the majority opinion here about the risks of attributing ME/CFS to psychological origin, and it is unfair to them for people to make sweeping generalizations from the comments of a guest writer who they probably could not tell exactly what to write.

If you have suggestions for CAA, please send them to CAA.

Kurt,

Your point is well taken about not attacking the CAA for the content of the article but this article was not simply left on Alex Howard's site (it was copied almost entirely from a commercial site).

The CAA must take responsibility for the what they promote and the ideas they propagate on their site and on my behalf as a patient. Discussing the impact of the CAA's actions should not be off limits in this venue.

 

[kurt]

Kurt--what you say is true but it is up to the CAA not to publish articles with misleading or false content. If they do, then it is not beyond the ken for them to be held responsible for the content.

Kurt,
Your point is well taken about not attacking the CAA for the content of the article but this article was not simply left on Alex Howard's site (it was copied almost entirely from a commercial site).
The CAA must take responsibility for the what they promote and the ideas they propagate on their site and on my behalf as a patient. Discussing the impact of the CAA's actions should not be off limits in this venue.

Agreed, and I just updated my MODERATOR post to include criteria for reporting a post (there is an icon for that on the bottom of each post). However, in this case the article that you believe has 'misleading or false content' is not on our forum, so we can not force CAA to 'take responsibility for what they promote.' forum members are welcome to make that type of comment as long as theydo not make false comments about CAA, and some posters here (not you two I believe) HAVE made some very false comments about CAA on this thread. Thus the 'moderator' comment.

As I said, this is a complicated situation and I certainly do not want to offend either the forum members or the CAA. IF rules get broken by either side continually of course I have to act, I hope you understand.

 

[starryeyes]

Requesting again, that the "article" be removed from the CAA site in it's entirety...with an explanation as to why it's being removed. Nothing less will do. j

Here! Here!

 

[justinreilly]

MODERATOR - This is a complicated topic and I am noticing a lot of CAA-Bashing over parts of an article they did not originate. Yes, CAA put that article in their newsletter, probably because they saw some things they thought would be helpful (pacing), but they list Howard as author, and he is not a CAA employee. CAA is one of our few advocates and funds important CFS research. If members want to debate or argue points made by Howard, or express negative opinions about what he said, please be clear when you are talking about Howard and when you are talking about CAA. I think it is safe to say that CAA agrees with the majority opinion here about the risks of attributing ME/CFS to psychological origin, and it is unfair to them for people to make sweeping generalizations from the comments of a guest writer who they probably could not tell exactly what to write.

If you have suggestions for CAA, please send them to CAA.

One other point, PLEASE be sure to state your opinion clearly as opinion, and not fact. Statements of fact that damage CAA's reputation (or anyone's) that can be proven false are considered libel and we are required to remove them. That takes time and moderators do not have time to police every post so again, PLEASE when you are sharing a negative opinion, make sure it is clearly stated as 'in my opinion'. If you believe a post has included false or libelous statements please report it to the moderators for review. This applies to people on all sides of this debate of course.

THANKS.

My legal opinion: I haven't seen anything libelous here. So I think this is a little overcautious. I certainly don't want to see anything false here, especially something that could damage someone's reputation whether or not it were unlawful. But this stuff is nowhere near libel especially since CAA would additionally have to prove "malice" (prove that the writer knew that what he was saying was false) since the alleged libel is directed against someone or an instituion in the public arena such as CAA.
I think it is CAA that comes closest to libel in putting out misleading and false info that damages the reputation and credibility of patients causing them substantial harm.
This is a forum for us to discuss our truths. If we think our advocacy institution is ineffective, detrimental to us and spreading misinformation, it certainly should be a topic of conversation. This is why it is great to live in the USA or any other country with protected freedoms of expression.

 

[sarahg]

what Shane said. That was very well put.

And here is a thought to take back for you, Jennie.

Many non-profit advocacy organizations get a lot of their grunt work done by volunteers. While probably not too many people are near enough to be there in person, a lot can be accomplished over the computer. Things like double checking mailing lists, compiling addresses, sythesizing data, vetting articles for publication, etc. Now logically you've gotta do a background check and a little training program, and that does cost money, but in the long run when you are short staffed and underfunded -implementing a volunteer program could really stretch those dollars. It could also be a great way to garner more direct patient and member participation and increase trust and goodwill- which will increase donations and membership in the long run.

I read somewhere that the membership numbers of the CAA are nothing like what they used to be. I am sure if that is true (I have no independent verification of this) your board is trying to do things to right the ship and get back on course and I don't think that will ever fully happen without a way for people to feel like they are involved and they have a say in how they are represented. A volunteer program would be a great way to do this. Even if it is as simple (no background check no training needed, minimal time commitment on both ends) as having a volunteer focus group put together that would get articles and press releases in advance (by as little as a few days even) and give you feedback. That could help avoid messes like this and previous ones.

ok I feel weird quoting myself. but anyway, I forgot a very, very important point if some sort of focus group were to ever be assembled. There would obviously have to be some sort of mechanism, maybe signing something, that would prevent people from sharing or leaking that info before it was available to the general public. With some kind of penalty if there was a leak. Because it would be pointless otherwise. Thanks again to Jennie for sticking this conversation out, I do hope some good comes of it, and I do hope you feel free to go and rest when you need to.

 

[gracenote]

Originally Posted by sarahg
Thanks again to Jennie for sticking this conversation out, I do hope some good comes of it, and I do hope you feel free to go and rest when you need to.

Jennie,

I would love for you to be able to have a second user name (I know this isn't allowed for good reasons, but . . .) so that you could come on the forums and just enjoy the support, and sometimes fun, and not always have to speak as a representative of the CAA. I wish for you a way to participate with us that would be more restful to you and give you a chance to engage with all of us as a fellow patient dealing with this confusing and debilitating illness.

Thank you for being so responsive to all our comments. Maybe you'd like to join us over at the Acronyms or the Haiku threads for a different kind of engagement.

Please take care of yourself. In the midst of all our concerns, we remain grateful to you.

gracenote