CAA is Listening

[starryeyes]

If they will do that, I'll become a member again as long as they never promote CBT and GET.

 

[Gerwyn]

Of course they're pilot studies. What do you expect? Full fledged multi-year 1,000,000 studies? Given the context CFS research field is in I'm very happy to have them. They are some of few studies we have going. I'm not going to look down on pilot studies when we have few major studies going.

I'm going to trust Dr. Klimas, Dr. Natelson, Dr. Jason and Dr. Bateman on the help that CBT and other therapies of that type can bring. No one's stating they're a cure - just a help for some patients. if done correctly. Just a part of the strategy for some patients.

If you look at the case studies in their new physician education program that's how its portrayed.

my point is that there is no scientific evidence that CBT is better than any other kind of therapy, or that it is better than doing nothing at all There have never been any improvement in objectively measurable parameters whatsoever.

This is not made anywhere clear enough in the CAA literature.

If this is not done then Drs will just interpret CBT as a treatment and draw rapid conclusions as to causation.

 

[Cort]

If they will do that, I'll become a member again as long as they never promote CBT and GET.

Oh well!

What if they're working on research that actually finds the physiological basis of this disorder and thus leaves CBT in the dust? That is their focus you know. You can contribute solely to their research program by the way.

I get it about the SPARKS document. Personally, the White thing I would let slide; it was one viewpoint among many but even though the Sparks document does not I don't' think over state the promise of CBT - simply by having it be so prominent - and not by offering more alternatives - it inevitably limits any physicians range of options severely. I don't mind a little CBT in a sea of other treatments - I think anyone with a chronic disease can probably benefit from some good coping strategies. To feature it so prominently, though, is a very dangerous thing that would likely lead physicians to simply discount other treatment possibilities (as well as the disease itself). My sense is that the limitiations of the treatment should probably have been more explicit as well.

I think by featuring graded exercise they do the same thing. Graded exercise - done very slowly - can be helpful for some patients - that is true! - but most patients are apparently doing too much exercise - even at their very low levels. That's what Staci Stevens and Dr. Freidberg say and that's not coming across. That's something else to work on. These things need to be very carefully couched in language that indicates they are helpful in managing a disorder and improving QOL but not a cure- and should not be the main treatment option. They are adjuncts only.

 

[Cort]

my point is that there is no scientific evidence that CBT is better than any other kind of therapy, or that it is better than doing nothing at all There have never been any improvement in objectively measurable parameters whatsoever.

I agree that the limitations should be made more explicit. I believe the CAA does do that with the new physician program. In that program it is simply one of many options physicians can take. They do state that it can increase functionality but that it does little for pain and fatigue. I think that makes it pretty clear that its not a major treatment which is exactly, in my opinion, where it should be.

I agree that the CAA has some work to do with explaining their stance on CBT. Obviously having SPARK up there is a problem. They're sending mixed messages about the treatment possibilities present with their own education program the CDC-CAA collaboration. think they should put it on their FAQ page http://www.cfids.org/cfidslink/2010/010607.asp.
Maybe they will. This group has had an effect on them before.

 

[MEKoan]

I get it about the SPARKS document. Personally, the White thing I would let slide; it was one viewpoint among many but even though the Sparks document does not I don't' think over state the promise of CBT - simply by having it be so prominent - and not by offering more alternatives - it inevitably limits any physicians range of options severely. I don't mind a little CBT in a sea of other treatments - I think anyone with a chronic disease can probably benefit from some good coping strategies. To feature it so prominently, though, is a very dangerous thing that would likely lead physicians to simply discount other treatment possibilities (as well as the disease itself).

This is precisely the problem: it leads physicians to simply discount other treatment possibilities as well as the disease itself. Well said, Cort!

See, even when we agree to disagree, we agree!

 

[jackie]

Just my personal experience...I have an HMO...to people that are unfamiliar with dealing with these as their insurance providers, please understand how difficult it is to be referred to a specialist (at least withing MY network) UNLESS you have a disease that fits within that specialists category (of course, I'm talking about receiving CONTINUED long-term care/support...not merely for a consultation/dx). You'd better darn well have a Disease or you WON'T be seen!

I have ME/CFS as diagnosed by THREE doctors (an I.D., a primary care AND a NEUROLOGIST). I have been under the care (as in every THREE MONTHS for TWELVE years) because I have a NEUROLOGICAL DISEASE as well as a VIRAL one. BTW...it was the Neurologist that initially dx'd me! (it took him eight years before he had ANY info on how to attempt to treat me.)

Also...Teej's post#95(?) I stand by that.

(Again, just my experience and my opinion, but sometimes...I'm not above throwing the baby out WITH the bathwater! Depends on the Baby....)

j

 

[Cort]

I knew there was hope for us Most of my reading prior to the forums was on reading studies as well and few treatment studies are show up there. I had been off Forums for several years but these Forums have really opened my eyes to all the different things people do that do help them. None of this you see in the scientific literature. The many devastating stories of people far worse off than me are always eye-openers as well; people on their last legs told to do CBT, for instance. Asking me to do CBT is one thing, asking someone who's completely fallen apart is another. Its like swatting at an elephant with a fly swatter.

Ironically for myself I don't see any other options than 'behavioral/meditative" type stuff. I don't have the money to see and doctor or to do any treatment programs.

 

[MEKoan]

There's always hope for us, Cort!

Aum!

 

[CBS]

Cort, Thank you! I appreciate your concern that the good work of the CAA be recognized. I also appreciate your willingness to reexamine the examples of potentially dangerous and simplistic treatment recommendations (and accompanying implications for the cause of CFS) that so many of us have had to expend precious energy to overcome or that have been used as the basis for the denial of much needed treatment not to mention out right derision by some.

This is a complicated illness (but in my case it has become less so as it has become more severe and disabling). We need clear and concise explanations and recommendations without a list of qualifications that could be misconstrued by the un-informed, mis-informed or outright antagonistic.

To me, advocacy groups ought to first do no harm. For whatever reason, along with the good the CAA has done, there has been harm. It takes a lot of energy to point fingers and engage in the dissection of motives. I'd rather focus on where to from here and what is reasonable for us to expect. I think we've reached a point in this discussion where there is a lot that we can agree upon (the degree of our willingness to forgive and forget may not be on that list).

How the CAA responds to the constructive portions of this conversation will say a lot (thank you to those of you from the CAA that are listening).

As for those of us with CFS that has progressed to the point of being life threatening or severely disabling, we must not settle for recommendations that do not place our experience at the front of all treatment recommendations. I can tell you now where I was and where I am but 10 years ago I never imagined how quickly things could go from sick but able to bed-bound and an inpatient on the Heart and Lung unit of the regional medical center.

 

[CBS]

Its like swatting at an elephant with a fly swatter.

I've always told my docs its like throwing marshmallows at a charging elephant. It just feeds it!

Ironically for myself I don't see any other options than 'behavioral/meditative" type stuff. I don't have the money to see and doctor or to do any treatment programs.

I've been there (and I still would be if it was not for my wife). Our "health care system" is a joke and I've seen the impact of good "mental hygiene" in my own life.

Hang in there (and in spite of all of us) please take good care of yourself.

 

[Gerwyn]

Doctors are trained in a particular manner of thinking ,

They handle and analyze data in a specific manner.

The treatment for type 1 diabetes is insulin because the cause of the symptoms is a defect in the manufacture of insulin.


They are taught that CBT can be a very effective treatment for a person with psychological problems..

if you put CBT and treatment together a doctors mind will take two and two and make 5.

If CBT is given prominance in a document the effect will probably be magnified as Drs tend to scan read at some considerable pace loking for relevant information

 

[CBS]

They are taught that CBT can be a very effective treatment for a person with psychological problems..

if you put CBT and treatment together a doctors mind will take two and two and make 5.

If CBT is given prominence in a document the effect will probably be magnified as Drs tend to scan read at some considerable pace loking for relevant information

CBT implies more than just psychological problems, it implies erroneous illness beliefs. The extent to which the term CBT must be qualified to convey that what was really meant was "support for adjustment issues related to dealing with a chronic disease" renders it useless, misleading and a hugely inefficient way to communicate with people who read articles simply scanning them for the take home message:

CFS = CBT = Erroneous Belief = Psychological Disorder

"Next patient!"

 

[Lily]

CBT implies a more than just psychological problems, it implies erroneous illness beliefs. The extent to which the term CBT must be qualified to convey that it what was really meant was "support for adjustment issues related to dealing with a chronic disease" renders it useless, misleading and a hugely inefficient way to communicate with people who read articles simply scanning them for the take home message;

CFS = CBT = Erroneous Belief = Psychological Disorder

"Next patient!"

This couldn't be more true, and anyone with only a moderate amount of experience with CFS knows this, whether patient or caregiver. How could someone with 20 years experience leading a prominent advocacy organization such as the CAA not know this? Twenty years. Think about it.

 

[oerganix]

Exactly, CBS!

I've been through CBT. It was described to me at my first appointment as a therapy to change the way I think about my illness. In examining how I thought about my illness, my shrink could not find any errors in my thinking about it, bless his heart for his honesty and open mindedness. He asked me many questions about how I was coping, etc. and then told me he had learned a few coping strategies he would pass on to other patients with CFIDS who had been sent to him. He reaffirmed that there was nothing he could add to increase my mental or physical health. But in order to keep up the charade that I am disabled by depression (CFS was not one of the boxes to be checked by Social Security Disability at the time I applied), I still had to see him once a month, get a Rx for antidepressant medication and pretend to get treatment that we both knew was futile and useless. Those monthly trips took a lot out of me, physically and financially, all to keep up the charade that CFIDS is not a physical illness. The only reason my doc understood all this is that he had CFIDS, too. He eventually had to quit work altogether, but fortunately for him, he had professional disability insurance and, after going through his own hell to get it, finally did get it awarded.

 

[oerganix]

This couldn't be more true, and anyone with only a moderate amount of experience with CFS knows this, whether patient or caregiver. How could someone with 20 years experience leading a prominent advocacy organization such as the CAA not know this? Twenty years. Think about it.

Yes, that's the whole point, isn't it...

 

[MEKoan]

Yes, that's the whole point, isn't it...

That's the whole point.

 

[Lily]

To be fair, patients often have unrealistic expectations of physicians regarding treatment/management of CFS. The educational module that was made available to physicians would be equally helpful for patients. http://cme.medscape.com/viewprogram/17442

 

[kurt]

If you want people to understand the seriousness of this situation they must know the potential devastation it can cause. I cannot see how describing primarily the more benign manifestations serves anyone except those who wish to dismiss us.
There are people on this board who cannot speak, cannot walk, cannot think, cannot bathe, cannot eat...
I think addressing the needs of those people first is staying firmly grounded in reality. The rest of us, the walking wounded, can wait a little longer. The 25% cannot.
ETA I just had to come back to make clear that I think most people don't know about the 25% and I don't think the current CAA materials or strategy will change that.

I agree that the 25% sickest CFS patients are the invisible ones, my point is that everyone with CFS needs care and help and rather than shift to portray CFS as a bedridden level illness what we need is an honest presentation of CFS, how it exists at many levels, including severe and mild, and how no therapies are universally effective and also how physician practices and opinions about CFS are often wrong and abusive to patients. If we were to focus only on the 25% sickest, then physicians who thought that view was representative of ME/CFS would probably dismiss the other 75% as being 'mental', saying, 'well, you are not bedridden, so just take this antidepressant, and get some exercise and behavioral counseling'.

Kurt- I don't agree with the above. How is it unethical to focus on the 25% most disabled. I don't think they or the other 75% would object; instead, as Dr. Yes pointed out, it would benefit everyone. I don't think anyone is saying put a picture of someone in a hospital bed and then say this is the typical case. We would be explicit about it being 25% of patients. I think that picture, of Lynn G. is it (?), on the top of the 25% homepage should go on the top of the CAA website, perhaps in addition to the tired, but otherwise healthy looking people now pictured there. I really don't think there is the remotest danger of a focus on the most disabled resulting in society and physicians being duped into thinking ME is more disabling than it is as the Wessely school is now trying to claim.

I guess we disagree in part, I certainly would object if CFS was hijacked by any sub-group of patients because that could leave me and many others even more out in the cold. But I do agree with what you say about how CAA should portray CFS, they should show a variety of levels and absolutely MUST include some representation of the sickest cases if they want to make a difference. I totally agree that the image of a tired woman leaning on a man while standing on the beach on the home page is a misrepresentation of even a typical CFS case. Unless that woman lives in a tent on that beach perhaps...

Incidentally, I spent several years completely housebound, and went for months at a time mostly bedridden, so I do know how bad that is, not being able to think clearly beyond wondering if you will make it through the next night. My doctor had to make house calls (I was lucky to have a doctor then who would do that). But I have had CFS for over 10 years and that is just one face of this disease, even in an individual case. There were years where I could work 30 hours a week and was able to still support myself and my family even with my CFS, and there have been years of disability where I could not work, but was not necessarily housebound or bedridden. To represent the whole of CFS is definitely complicated and I am not surprised nobody has really succeeded yet.

I'm suggesting that our patient organization, the CAA, is the only organization that is in a position to change the public perception about ME/CFS, and that for whatever reason (and let's not keep arguing about this), they have not adequately represented us. Even you say they can do better. Can we put our heads together and come up with what can be done differently so that we change what is being heard, not just by us as patients, but by the community at large? At some point it no longer matters what is being said and being done, what matters is what is being communicated.

So are you suggesting a type of patient congress? Might be a good idea. We do not all have to agree on everything, but maybe if we found a few universal points that most patients agreed on perhaps we could have some influence.

Yes, CAA has not yet solved CFS, and maybe not dramatically changed the public perception of CFS. But also I am not certain anyone can accomplish either of those goals at this point. Maybe the question we should be asking is exactly how any group can make a real difference in CFS. What are the barriers to our progress? I would love to see a professional assessment of our image and how to make a change, who does that type of analysis?

I also blame the CAA for the maltreatment I've received from doctors and nurses and other medical staff who have told me that I'm either faking or that CFS is psychological.
I blame the CAA for the fact that after finally tracking down the best doctors I could find, these doctors still don't comprehend how severely CFS affects me.
I blame the CAA for the fact that every CFS patient I talk to says the same thing no matter where in the world they live.

I'm never going to feel good about the CAA nor ever support them until they remove their damaging medical educational materials.

Is CAA really responsible for the state of affairs in the CFS research and advocacy world? I thought it was CFS itself that was our nemesis. CAA can only be held responsible for their actions, not the actions of doctors, researchers and government officials, or the existence of a complicated disease that we may not even have the tools yet to solve.

Definitely CAA can and should be held responsible for any problems with their medical educational materials. But I would not hold them responsible for the actions of doctors who know how to read and have the ability to study up on CFS research if they want, if they actually cared enough. I hold those doctors responsible and if it were my choice I would take away the licence of every doctor who misses proper diagnosis and treats CFS patients with a cavalier attitude.

.The information given out by the CAA regarding CBT is plain wrong

Which information do you mean? Stating the research on CBT is not wrong information, they quote real studies. Rather, highlighting CBT the way they do without detailed warnings is what I would say is plain wrong. The overall positive tone of the Sparks website is what bothers me, that creates the wrong message, and even suggests most cases of CFS are treatable at some level. But in fact many patients get no relief from ANY of the treatments they try, and many more have no resources to even try anything, particularly in the US where poverty=no healthcare. The CDC website is more accurate in terms of the tone, pointing out the low recovery rate, etc. So I agree this is a problem CAA must address in their materials.

Asking me to do CBT is one thing, asking someone who's completely fallen apart is another. Its like swatting at an elephant with a fly swatter.
Ironically for myself I don't see any other options than 'behavioral/meditative" type stuff. I don't have the money to see and doctor or to do any treatment programs.

Cort, I love that image, I have had several doctors just tell me to use a bigger fly swatter for that elephant.

I have also ended up finding a few natural supplements and a few cognitive type therapies to be helpful, both for coping with CFS and also to help reduce general stress levels. Also a very low level of 'ungraded exercise' helps me, basically enough movement and low-level activity to keep the lymphatic circulation going. But never trying to increase beyond what I know I can tolerate. I tried gradual ('graded') increases once for about a year and that always led to crash, but I did find a certain level of activity I could tolerate, and that has been helpful. BUT, none of this goes beyond ordinary coping. So these are not really treatments, they are coping strategies, to try to maintain some level of health in the middle of a disease. That is where I think CAA and some other CFS advocates and websites out there, particularly in the UK, have 'missed the boat.' Coping strategies are not treatments.

I totally relate to your situation, maybe there are some good therapies out there, but I also have no resources for that any more, and medicare will not pay for anything other than standard 10 minute doctor breeze-through sessions where they ask questions to figure out if you need any of the drugs they like to prescribe. I have been on a waiting list for over a year for a good CFS doctor in my area, but never even hear back from them, although I call now and then. So all I have left are coping strategies.

IMO, if CAA wants to talk about GET/CBT and related therapies, that information should be put in a section for coping strategies, with a very strong, bold-faced warning included. Certainly not even hint that they are treatments for CFS.

 

[CBS]

Coping strategies are not treatments.

<snip>

IMO, if CAA wants to talk about GET/CBT and related therapies, that information should be put in a section for coping strategies, with a very strong, bold-faced warning included. Certainly not even hint that they are treatments for CFS.

It seems so obvious but this needs to be front and center with all coping strategies. :victory:

 

[parvofighter]

Bingo, Kurt!

Thanks Kurt, you nailed it::victory:

So these are not really treatments, they are coping strategies, to try to maintain some level of health in the middle of a disease. That is where I think CAA and some other CFS advocates and websites out there, particularly in the UK, have 'missed the boat.' Coping strategies are not treatments.

Frankly, I think this would be a great motto for the CAA and/or other ME/CFS advocacy groups:

Coping strategies are not treatments.
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