The CAA Pamphlet to Educate Doctors

[MEKoan]

Jspotila,

Are you guys under some contractual arrangement to continue to offer that pamphlet to doctors?

As Andrew said:

This is a pamphlet being offered to doctors to give them an overview of how to deal with patients. We cannot assume a doctor is going to ignore the pamphlet and search the web site instead.

While we wait for the many exciting developments we hope for and expect this year, we cannot continue to distribute, nor can we sanction the distribution of, such potentially damaging information. We can only hope it is being ignored which is a pretty sad state of affairs, IMO.

I appreciate your willingness to engage in dialogue with us here. I think it sets a good example for the CAA going forward with open communication between the organization and the ME/CFIDS community.

Koan

 

[starryeyes]

I'm really glad to see all of you are continuing to keep up with this issue. Welcome Chris, you're not too late.. we're just getting started!

It's amazing to me to see that this "educational literature" is affecting Canadians as well.

The bottom line is, the CAA website SPARK! needed to be removed and/or radically changed yesterday.

Thank you Jspotila for continuing to hang in there with us and for helping us get this message through.


Come on CAA, do the right thing for us!

 

[Anika]

I appreciate jspotila's following up with the CAA about the various comments. Koan, thanks for raising the question of whether some of the holdover could be the result of the expiring contract. In any case, it sounds like soon there should be no barrier to getting the "bad" info out.

Sometimes we get frustrated that there is not more good information out there, but one real problem is that it takes a lot of resources to keep something up to date. Once something gets put on a site, it often doesn't get reviewed or retired as quickly as it should.

I am in the camp that on this type of issue, it's better to have less, and be certain it is very very very good, includes appropriate disclaimers, and kept up to date, on resources that will be widely used. And there have been some excellent ideas about cautionary statements and disclaimers that should become boilerplate for lots of advice.

Now, if we can get the CDC website to get rid of some of the misleading statements on CFS - that would be an amazing turn of events, but possibly within our reach with new leadership.

Anika

 

[starryeyes]

Anika wrote: Now, if we can get the CDC website to get rid of some of the misleading statements on CFS - that would be an amazing turn of events, but possibly within our reach with new leadership.

I like the way you're thinking Anika and welcome to the forum. :Retro smile:

 

[jspotila]

Jspotila,

Are you guys under some contractual arrangement to continue to offer that pamphlet to doctors?

The public awareness campaign contract is, as of this moment, still an active contract. However, it's in the final stages of writing all the massive amounts of internal documentation required by CDC. As I said, a final decision about the Spark! site will be made in the context of the closing of that contract. I understand everyone's impatience.

As Anika said, it takes a high concentration of resources to keep a website up to date. This is especially difficult at this moment because of the fast developments in other areas - the IC study, Reeves' departure from the CFS program at CDC, etc. Staying on top of these developments, as well as all the other work (none of which has been reduced even though we lost staff members in December 2008), is a signfiicant resource challenge.

 

[Samuel]

Staying on top of these developments, as well as all the other work (none of which has been reduced even though we lost staff members in December 2008), is a signfiicant resource challenge.

How many resources would you estimate it would take to take the pamphlet down NOW?

 

[MEKoan]

Hi Jspotila,

Thanks for your ongoing participation in this conversation.

I agree with Samuel and others who have said that no pamphlet would be far, far better than this pamphlet.

Thanks again,
Koan

 

[anne]

I agree.

Jennie, I'm so grateful that you're talking to us, and I know you're in a bad position, here.

Where we live, our world-renowned medical center offers referrals to psychologists, CBT, and GET. They are useless, if not harmful, for CFS. I had no idea they could have gotten that protocol from our own advocacy organization. Doctors don't get CFS, they're not sure what it is, some of them think it might be part psychological. Some think it doesn't exist at all.. And so getting information from an advocacy organization that suggests CBT and features psychologists reifies this suspicion. I doubt these doctors are getting things from Lupus and MS organizations suggesting CBT. And once you say CBT, once you start talking about psychological elements, that's all these people are going to see.

I'm also discomfited that no one at the CAA ever said, "Wow, we've featured that guy who's making the people we advocate for so miserable in England in a pamphlet for doctors! The last thing we would want to do is appear to condone his views. We better get that off, pronto!"

It's bad enough that we have to explain to our doctors that they need to ignore everything coming out of the CDC on CFS. It's really bad that we need to tell them to ignore the information of the CAA.

Things move fast, yes. But it's better to have no information than bad information.

 

[jspotila]

Jennie, I'm so grateful that you're talking to us, and I know you're in a bad position, here.

I truly don't feel like I'm in a bad position here. I'm happy to be here, and happy to hear what everyone has to say.

I think this thread and others have captured objections to the content of this article from 2006, as well as the information the Association has published on CBT. I don't have the energy to find the posts, but the fact sheet on CBT includes many of the caveats and explanations that patients have asked for. The 2006 article at issue here includes multiple pages about medications used in treating CFS symptoms, pain management, etc. And as previously noted, Drs. Klimas, Lapp, Bateman and others contributed to that article.

As I mentioned, the future of the content on the Spark! site is an open question. The Association is pursuing a comprehensive communications strategy, and I expect to see many changes in the coming months.

 

[usedtobeperkytina]

Well, whatever communications strategy you form, could you include Alabama? The photos never came to our state. We are not all just happy, strong, overall-wearing farmers here.

But, we are in a wasteland as far as CFS, yet we have UAB, a well-known HIV research center, along with other illnesses. We have people in our state who have CFS and can't find a good doctor. Please educate our doctors here.

Tina

 

[rebecca1995]

I agree with those who have said that this pamphlet should be removed immediately and kept off the CAA website until the group has the resources to rewrite it.

The recommendation by Peter White and others that PWCs engage in GET and CBT is potentially disastrous for severe patients, and I feel it reflects a broader tendency of the CAA and even some of our specialists to ignore the realities of severe patients.

We can't walk. We need help bathing and sometimes eating. We can't leave our homes for years at a time. We can't drive to the clinic and sit upright all day filling out paperwork and mood surveys for these allegedly positive CBT/GET studies. We are impoverished, unless our families support us. We use our energy fighting for services from the state, so we can survive.

Rather than encouraging doctors to "treat" us with GET and CBT, the CAA should impress upon physicians the importance of getting life-saving services for severe patients, such as sufficient hours of home care through the CDPAP program; physician housecalls for those unable to leave their homes; and electric wheelchairs for those unable to walk.

If I were to attempt some externally-imposed exercise program, like the "five minutes of activity/ five minutes of rest" referred to early in the thread, I would experience a paralytic weakness so extreme that that I would be unable to get up even to use a bedside commode. What would I do then? Who would help me? Peter White? As severe patient L. said in her CFSAC video testimony, "I am virtually invisible."

The White recommendations could be life-threatening for the sickest among us. There is no excuse for leaving that pamphlet up a minute longer.

 

[starryeyes]

rebecca,

Your points are exactly right!!!!!!!!!! :victory::victory::victory: :victory::victory::victory:

You hit the nail on the head! I wish we could use your ideas to make a pamphlet. Our problem is we don't have a way to print and distribute pamphlets once we create them.

If only someone like the CAA would do it. :innocent1:

tee

 

[anne]

There is a lot of good information in the booklet. But the fact that there is good information does not mitigate the bad information, that's the problem. You don't know how carefully someone will read something. And dedicating so much space to psychological treatments lends a certain impression.

I think in the past the CAA was interested in working within the bad system that we have. And that resulted in some compromises. And those compromises were seen as necessary to the greater good. But in the past couple of years, the CAA has clearly decided this system of compromise does not do any good and they are going to take a stronger stand.

The pamphlet seems to be one of compromise, of trying to play to all sides. (And given it was sponsored by the CDC, it's no surprise that there's bad information in there, but the CAA got a lot of good information and must have fought to get some things in.)

But the pamphlet reflects an old CAA, one that tried valiantly to work within a flawed system. And the flaws in that system are apparent in the pamphlet. And no matter what good information is there, the bad information, and the endorsement of someone from the psychosocial school, is all that truly matters.

 

[srmny]

My experience, like many others on this forum, taught me to stay away from exercise. After being very ill with severe ME/CFS for 10 years I was diagnosed with a brain tumor. My most severe symptom at that time was cognitive function and my IQ had dropped from 129 to 86. Following weeks of radiation I began to improve, in cognitive function, orthostatic intolerance and energy levels. After a couple of years I began to think I was the exception to the rule and I was nearly cured. Because I had moved away from my CFS specialist and only saw her once a year, I ignored the vaguely remembered warning from her months earlier and began a self imposed exercise program to drop a few pounds. It took only days before I was in the emergency room with a extreme shortness of breath and a pulse of 140 that would not come down. I lost my good health and gained all of the symptoms I had struggled with prior to my brain tumor treatment. I am no longer severely ill, as in can't lift my head from the pillow, but am moderately ill, as in confined to bed more often than not. And so I believe that all exercise treatments should not only be removed from any and all CFS literature but such literature should also include a WARNING AGAINST exercise. I believe many more of us are harmed but it than helped by it. I also must say that the inclusion of anything Peter White has to say should never have been included in any of our CFS literature. It was a truly insensitive and politically foolish move by the CAA. It is difficult to not question if they are actually working against us rather than for us when they include a treatment that is such a contentious issue. I honestly can not see anyway to defend including such a controversial treatment.

srmny

 

[rebecca1995]

...began a self imposed exercise program to drop a few pounds. It took only days before I was in the emergency room with a extreme shortness of breath and a pulse of 140 that would not come down. I lost my good health and gained all of the symptoms I had struggled with prior to my brain tumor treatment.

SRM, I'm afraid your experience with exercise is all too typical among PWCs. It can be a serious hazard to our health.

teej...Yep, it looks as if patients will have to write a realistic pamphlet if the CAA won't.

Anne...you're right, the pamphlet was written under a flawed system of the Reeves Era. Thankfully, the Reeves era is now over and the CAA needs to keep up.

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.

 

[starryeyes]

Good job on the Warning and Disclaimer rebecca. Will you submit those to the CAA?

 

[Dr. Yes]

Great points in your last two posts Rebecca. I would also like to add that if the CAA feels that for some reason it cannot address the issue for some months, not even to simply temporarily remove the 'pamphlet' from its place on the Internet, couldn't they at LEAST at this time remove the link to the Spark pages from their own homepage?? ("Spark! Media" on the left column)

 

[jspotila]

Update

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.

 

[CBS]

Jennie,

I cannot put into words just how much this had made my day. I'm starting to believe that things really are changing and that brighter days lie ahead.

Thank you

Shane

 

[starryeyes]

Great Jenny! Thank you for letting us know. :Retro smile: