The CAA Pamphlet to Educate Doctors

[anne]

That. Rules. THANK YOU.

 

[kwietsol]

Wow. Jennie. Thank you so much!

 

[rebecca1995]

Excellent news, and thanks for telling us!

:Sign Good Job:

 

[MEKoan]

Wow, Jennie, great news! Many thanks!

 

[Dr. Yes]

Thanks for keeping us all informed, Jennie S.!

I am glad and relieved that the CAA took the appropriate step on this issue. (I would still like to know how that inclusion was made and went unchecked for so long -- though as you pointed out earlier, the person responsible for that brochure's development, Marcia Harmon, no longer holds that position.)

I hope we can continue to work together to resolve the still huge problem, outlined throughout this thread, of the potentially damaging exercise advice and general lack of representation of severely ill ME/CFS patients in other CAA literature.

I would also suggest that the link to the CDC for the "Toolkit" brochure be removed from the new Spark page, as that CDC page also links to other Reeves-era CDC literature which advises physicians, among other things, not to test patients for pathogens as even if they were positive their presence would only "rule out" a CFS diagnosis:

"No diagnostic tests for infectious agents, such as EBV, enteroviruses, retroviruses, HHV-6, Candida albicans, or Mycoplasma incognita, are diagnostic for CFS and, as such, should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests (e.g., measurements of natural killer cell number or function), cytokine tests (e.g., interleukin-1 or -6 or interferon), or cell marker tests (e.g., CD25 or CD16), have value for diagnosing CFS."

(from the CDC brochure for physicians "CFS Booklet")

I don't think we can count on the CDC to be anywhere near as prompt as the CAA has been in addressing our concerns, and as the CAA already provides this Toolkit separately, I assume there would be no problem in removing the link.

Thanks again for your efforts, Jennie, and I hope you are feeling better too! :Retro smile::Retro smile:

 

[_Kim_]

The weirdest thing just happened. I was looking at [New Posts] and when my eyes came to this thread, I read "The CAA Pamphlet to Scare Doctors". I thought, "oh, someone with a sense of humor changed the thread title". I blinked a few times and then realized that I was only imagining that.

If this wasn't so absurd, I would be terribly frightened. I don't like what's happening to my brain.

 

[Samuel]

The Spark! page has been updated: http://www.cfids.org/sparkcfs/health-professionals.asp

The article from 2006, "Clinical Care for CFS" is not linked on that page. A link to the Canadian Clinical Case Definition has been added.

jspotila,

Thank you for keeping us informed. I appreciate that. It
looks like an improvement to make those changes.

Here are two more things that need attention on that page.

The CAA prominently links to a CDC page that prominently
contains a document that says the following under the
prominent heading, "Will GET do me harm?":

"You may be worried that any increase in exercise or
physical activity could make your condition worse. Be
reassured - research has shown that a guided, gradual
exercise programme can help people who suffer from CFS/ME
without causing ill effects."

The page also links to a "12 page kit" that is hosted on
the CAA site. This was provided by the CDC.

This document is almost entirely behavioral, shows a picture
of Reeves, and says:

"Multiple and varied biopsychosocial factors impact illness
expression in patients and in their acceptance and readiness
for therapy, including CBT."

The above are examples of the CAA following the CDC. It's up to all of us to monitor the CAA to make it act more independently of the CDC.

Thanks for passing information to the CAA, jspotila.

Samuel

 

[starryeyes]

Excellent points Dr. Yes and Samual. Thank you for staying on top of this. I hope that the CAA will do the right thing here for all of us.

Kim.. I do stuff like that a lot. That's one reason I'm glad I no longer work so I don't have to try to explain my mistakes etc... It is very scary.

 

[MEKoan]

The weirdest thing just happened. I was looking at [New Posts] and when my eyes came to this thread, I read "The CAA Pamphlet to Scare Doctors". I thought, "oh, someone with a sense of humor changed the thread title". I blinked a few times and then realized that I was only imagining that.

If this wasn't so absurd, I would be terribly frightened. I don't like what's happening to my brain.

Well, my friend, I don't know if this will be comforting or terrifying but that kind of thing, exactly, happens to me rather a lot.

It happens to me if the word I am misreading is somewhere else on the page, even if I have not consciously read it, or if I have recently read it elsewhere or even just thought it in some other context. Sometimes I can't figure out where it came from but once it makes sense it's kinda sticky even if it isn't really there.

It's a brain lag kinda thing, I think. You can give give your brain a beat to sort it out but it will hang on to what it "thought" made sense for a remarkably long time.

So, if I seem ok to you, you're fine. Well, you're fine for us.

If I don't... well...

 

[MEKoan]

Samuel and DrYes,

Thank you both for bringing your fine minds to the task of ensuring that all problematic material is removed or amended from the CAA site.

Some of us would have missed the fact that there remains work to be done if not for you guys!

 

[_Kim_]

Kim.. I do stuff like that a lot. That's one reason I'm glad I no longer work so I don't have to try to explain my mistakes etc... It is very scary.

Well, my friend, I don't know if this will be comforting or terrifying but that kind of thing, exactly, happens to me rather a lot.

It happens to me if the word I am misreading is somewhere else on the page, even if I have not consciously read it, or if I have recently read it elsewhere or even just thought it in some other context. Sometimes I can't figure out where it came from but once it makes sense it's kinda sticky even if it isn't really there.

It's a brain lag kinda thing, I think. You can give give your brain a beat to sort it out but it will hang on to what it "thought" made sense for a remarkably long time.

So, if I seem ok to you, you're fine. Well, you're fine for us.

If I don't... well...

Thanks tee. Thanks Koan. Knowing that what happened is ME/CFS 'normal', I can just laugh at myself when it happens now

Koan, I think you're right about it being sticky once it's in there (or up there). My brain/memory seems to prefer my imagined title and won't accept that it's not so. Hold me back. I've got one finger on the [Edit Thread] button ready to change the title to 'SCARE doctors'. If I have to see it that way, then so should the rest of you.

I don't know what I would do if all of these symptoms were happening and I had no one to tell/ask/reassure me.

thanks

 

[flex]

Wow

I just stumbled on this thread today. Cant say anymore than keep your eyes on the ball. I had no idea that in Dec so many Americans new nothing of the plight of the Brits and it was heading their way on a plane flown by Captain Peter White. WOW JUST WOW!!!

Look what has happened in a few months thanks to people like TEEJ. Exceptional work TEEJ.

Cort sometimes you just gotta hold your hands up and say you were wrong!!

 

[RestingInHim]

Staci Stevens is an exercise physiologist who has CFS; she and Snell and Vanness pioneered the repeat exercise protocol that found verifiable metabolic dysfunction in a significant percentage of patients.

Most treatments don't work for most patients but some treatments really do for some patients. Does that mean the CAA should leave them out?

While you're horrified by Dr. White's statement I would submit that the rest of the pamphlet is really very good. As the CAA does they took advice from a broard range of physicians from Lapp to Peterson to Klimas and yes, to Dr. White. Most of them had decades of experience working with CFS patients - honestly I trust their judgment over any one patients. I doubt that many physicians have true ME patients in their practice; ie came down with it during a localized epidemic.

Honestly I doubt that it matters. After several months the ME
patients look exactly like chronic fatigue syndrome patients; the
paralysis, if present, drops away as do the severe muscle twitches (if present), the
headaches usually calm down and they suffer from post-exertional malaise, emotional lability, concentration problems etc.

Many patients have found the graded exercise - done correctly can be very helpful. I have certainly found that - five minutes up and five minutes down etc - works. No activity at all does not. I read of patients who were bedbound who are now walking (probably not very well) because of graded exercise. If you ever want to look into the horrors caused by deconditioning I think you'll find that its something to be avoided at all costs. Throw those problems on top of CFS and you're really, really in bad, bad shape.

I never expect to agree with everything that anyone puts out. I thought it was a very, very good document! I would note as well that its an attempt to cover all aspects of CFS treatment- that would take a small book. Everybody's going to find something they think should have been in there.

Cort,

I just found this thread and so appreciate your comments. You always bring balance and knowwdge to whatever issue is addressed. Thank you!

I'm thinking from your post that you would recommend passing this pamphlet on to our physician??

Don't know that I'll read the remainder of this thread. You have given the balance I was looking for.

Be well!
Still resting...

 

[Dr. Yes]

Great Scott, RestingInHim, don't stop reading there !! You will have completely missed the most important points, including those that tie into the DSM thread!!

 

[RestingInHim]

Great Scott, RestingInHim, don't stop reading there !! You will have completely missed the most important points, including those that tie into the DSM thread!!

I did read on.. But gotta admit I tired of all the squabbling!!

I would like to know what the DSM thread is and where I can find it. Guess I'll have to keep reading.

Thanks for looking out for me, Dr. Yes!!!

 

[_Kim_]

I did read on.. But gotta admit I tired of all the squabbling!!

I would like to know what the DSM thread is and where I can find it. Guess I'll have to keep reading.

Thanks for looking out for me, Dr. Yes!!!

You missed the most important part of the thread. What you see as squabbling is Phoenix Rising advocacy that is making a difference. Due to the discussion on this thread, action has been taken by the CAA.

The Spark! page has been updated: http://www.cfids.org/sparkcfs/health-professionals.asp

The article from 2006, "Clinical Care for CFS" is not linked on that page. A link to the Canadian Clinical Case Definition has been added.

 

[starryeyes]

It's hard for me to understand why any person with CFS would not realize how detrimental it is to all of us in every country for the CAA to be touting CBT and GET as treatments for CFS and quoting the UK psychiatrist Peter White in most of their medical educational materials. Peter White believes that CFS is purely psychological and that we are all a disgusting bunch of malingerers.

People in the UK have died or become much worse because of CBT and GET being forced on them. And as I speak, our own Dr. Yes in New York City and Kati in Canada are being strongly coerced into doing GET. In Kati's case, she risks losing her disability or having a serious problem with it if she doesn't comply in participating in this "rehab program". That was the condition of getting her disability. This proves we have a tremendous fight on our hands with the psychologizers who are in power and are out to "force" us to get better.

I have to admit that I feel the same frustration with those PWC who seem to be fighting those of us with CFS who object to such propaganda as I do with trying to explain my illness to doctors and others in my life who just don't get it.

I think this is happening here because some PWC here have mild CFS and have no idea that they too can become much more ill and in constant intractable pain themselves. I once didn't believe that it could happen to me but it has for a decade now and I had mild CFS for 11 years.

Be that as it may, the most important thing is that we get the CAA to take all references to CBT and GET out of their materials because both “therapies” are being used in abusive ways with PWC here and in other countries.

It's got to be obvious to everybody by now where the CDC stands on the issue of CFS. These medical educational materials were created when the CAA was working with and funded by the CDC. Recently the CAA woke up and saw the light and have stated that they don't trust the CDC and will no longer work with it.

Now is the time for the CAA to show PWC where they really stand. By leaving CBT and GET in their medical educational materials for our doctors they are harming PWC.

 

[starryeyes]

The stance being taken by the PWC that believe the CAA is right to teach our doctors that CBT and GET are useful “treatments” for CFS reminds me of the poem that goes, “First they came for the gays but I wasn't gay so I didn't do anything. Then they came for the Jews but I wasn't Jewish so I didn't stand up for them. Then they came for me but there was no one left to stand up for me.” Don't be so sure that CBT and GET are not going to be forced upon YOU in the future and you can thank our CAA for that!

As rebecca said on P. 18 of this thread:

If they're not going to stop distributing the pamphlet, they should insert a warning:

WARNING: Exercise in PWCs can cause adverse effects including, but not limited to, reduced capacity to perform daily activities, long-term cognitive impairment, and permanent decline in function.

For its own legal protection, the CAA might seriously consider also stamping a disclaimer on every pamphlet it distributes to doctors:

DISCLAIMER: The CAA is not responsible for any adverse effects resulting from the behavioral and exercise programs endorsed by this pamphlet.

 

[MEKoan]

But gotta admit I tired of all the squabbling!!

We here are very fortunate that we can tire of the squabbling. Those who are sectioned for refusing, failing at or protesting CBT and GET, or those who have taken their own lives following humiliation and abuse are not so lucky.

 

[PoetInSF]

The stance being taken by the PWC that believe the CAA is right to teach our doctors that CBT and GET are useful “treatments” for CFS remind me of the poem that goes, “First they came for the gays but I wasn't gay so I didn't do anything. Then they came for the Jews but I wasn't Jewish so I didn't stand up for them. Then they came for me but there was no one left to stand up for me.” Don't be so sure that CBT and GET are not going to be forced upon YOU in the future and you can thank our CAA for that!

Well, teejkay, you are completely free to clamor for things like XMRV test, MRI or LP that lead to absolutely nothing other than racked up fees for the quacks, and stay sick for the next 25 years. CBT/GET are not forced upon some of us, but we embraced it voluntarily, and some has indeed improved. It would be selfish of you to deny that opportunity to others in order to satiate your grudge to what you perceive to be abusive.

As for CAA pamplets like http://www.cfids.org/sparkcfs/exercise.pdf and http://www.cfids.org/cfidslink/2009/080505.pdf, my experience agrees with them 100%. And I have a reasonable confidence that they do work for patients like me because I discovered them on my own through experiments. I think you ought to do yourself a favor and give it a try unless you are completely bed bound like I used to be in 2008.