Time for the Big Talk. How's the CAA doing?

[gracenote]

how to find "good" CBT

Here is the question I've had about CBT. If we assume (and I'm not assuming), that CBT can be handled in such a way as to benefit someone with CFS (helping us live with this disease and not deny its reality), how would one find such a practitioner?

A couple of years ago, a CFS doctor I respect (have no memory of who at this time), said something to the effect that CBT can be useful to us but he could only think of one or two practitioners that he would recommend. He felt like it was NOT a good idea to suggest that we try to get CBT because most of it would not be helpful, and might in fact be harmful. (I know, I should have a quote.)

Here is what the Association says about CBT:

7. CBT requires special training and must be administered by a skilled specialist. It should be noted that psychologists are not the only health care professionals that can successfully guide CBT. Nurses, physical and occupational therapists are examples of multidisciplinary providers who are trained in CBT. The CBT therapist needs to be familiar with CFS, be aware of the evidence for CFS as a biologically-based disorder and validate a persons experience of living with a misunderstood illness.

8. The National Association of Cognitive Behavioral Therapists available at 1-800-853-1135 may be able to assist in finding a trained provider in your area. Contacting local mental health provider groups, physical and occupational therapy practitioners or health care organizations may be helpful as well.

This sounds like a nightmare trying to go this route. How many of these practitioners, even very well meaning ones (and I do think there are many well meaning CBT practitioners), would not rely on the published "research" that does not believe CFS is a biologically-based disorder? And if you were to ask if they thought CFS were a "real" disease, would you get the answer that no, I think it's based on wrong illness beliefs?

I have been unable to find any of the "good" CBT literature that spells out these distinctions. Has it been published somewhere?

 

[fresh_eyes]

@ jspotila - Jennie, have you looked at this document?

http://www.cfids.org/sparkcfs/clinical.pdf

 

[Cort]

7. CBT requires special training and must be administered by a skilled specialist. It should be noted that psychologists are not the only health care professionals that can successfully guide CBT. Nurses, physical and occupational therapists are examples of multidisciplinary providers who are trained in CBT. The CBT therapist needs to be familiar with CFS, be aware of the evidence for CFS as a biologically-based disorder and validate a person’s experience of living with a misunderstood illness.

8. The National Association of Cognitive Behavioral Therapists available at 1-800-853-1135 may be able to assist in finding a trained provider in your area. Contacting local mental health provider groups, physical and occupational therapy practitioners or health care organizations may be helpful as well.

I think what the Association is basically saying -rather obliquely - is that its difficult to find a good CBT therapist. They're making it clear that not just anyone can do this and if you go to the wrong person you're going to get the same old results. On the other hand people who employ it in the right manner can be helpful for some people. They're no different from standard medical doctors - its not going to be easy to find a good one.

 

[Cort]

Hi Cort. Thanks for chiming in on all this. It sounds like you are pretty discouraged about the lack of research and funding, which is totally understandable - I do think, though, that if there's ever been a time when we *might* be able to change the playing field, it's now. ACT UP did it with AIDS. (And that was before the cause of AIDS was known.) Maybe we can do it, too.

Re the ERV study above, is that Dr Huber?

I agree this is a great time to do this. (Its always a good time but this is a great time - when we have some momentum).

Dr. Huber is doing the ERV study.

 

[Cort]

I have been through the CDCs courses - CFS: A Primer for Allied Health Professionals, Course WB3151 http://origin.cdc.gov/cfs/cme/wb3151/
The following individuals are considered content experts for this activity:
James Jones, MD, Research Medical Officer, Centers for Disease Control and Prevention
Teresa Lupton, RN, BSS, Coordinator for Medical Opportunities, CFIDS Association of America
Kimbery McCleary, BA, CEO, CFIDS Association of America
William Reeves, MD, Branch Chief, Centers for Disease Control and Prevention
Vicki Walker, BA, Manager, Research and Public Policy, CFIDS Association of America (formerly)
Course Two, WB1032, CFS: Diagnosis and Management http://www.cdc.gov/cfs/cme/wb1032/introduction.html
This course was authored, reviewed and/or edited by the following individuals:
James Jones, MD, CDC/NCID
Teresa Lupton, RN, BSS, CFIDS Association of America
K. Kimberly McCleary, BA, CEO, CFIDS Association of America
William Reeves, MD, CDC/NCID
Vicki Walker, BA, Graduate Certificate in Public Health Issues, formerly of the CFIDS Association of America

It was a conservative course- that was to be expected (at least I expected it). The CAA created their own course a year or so ago

As well as the Medscape CME - Chronic Fatigue Syndrome: From Diagnosis to Management http://cme.medscape.com/viewprogram/17442
Marcia Harmon; Lucinda Bateman, MD; Charles Lapp, MD; K. Kimberly McClear

y

I would trust any course co-authored by Dr. Lapp and Dr. Bateman; both have been in the field for many years. Dr. Bateman's sister had CFS ( and apparently died (of it?) - that's why she got into the field.

I have to say that I find the content deficient and would definitely NOT want to see a doctor who thought this arms them to treat a CFS/ME/CFIDS patient. Many of the items suggested refer to CDC studies that have been discredited; yes they still push CBT and GET, and keeping discussing stress and maladaptive coping mechanisms, and repeats that there are no biomarkers or labs. It says CFS has no neurologic or muscular signs, that belongs to ME which has a separate case definition, so I imagine many of us would conclude we have ME

.

Unfortunately there are no biomarkers, no consistent muscular signs or neurological signs (maybe Rhomberg stance?). There are some accepted findings (NK cell problems, low cortisol, HRV abnormalities, ???) but not that many unfortunately.

It does not include data seen in the independent researcher’s studies that review systemic defects and would show contraindications for the very therapies like GET – such as cardiac dysfunction.

Unfortunately the data on cardiac dysfunction isn't really compelling yet either. Few replicated studies - alot of stuff on the fringes - always a problem for us. Cheney has never published on cardiac findings. There's just not that much data!

I would much rather a doctor look over Katrina Berne’s extensive CFS/FM Checklist and spend time on a number of web sites including Phoenix Rising, the fact is they don’t have time, and they take these CME’s as definitive and would doubt the value of material from other sources. The fact is much of the materials for physicians are wrong and outdated and based upon many discredited materials.

Honestly I would trust Dr. Bateman and Lapp to create conservative but accurate overviews of treatments for CFS.

Dr. Berne is a member of the CAA's Board of Directors by the way.

 

[Cort]

Lots of different practitioners in this document including Peterson

http://www.cfids.org/sparkcfs/clinical.pdf

 

[The Phantom]

I just took a very quick tour through the current course for physicians on the CAA website (because that's all I have the energy for right now). There are some immediate obvious problems:

The course has expired and no longer offers Continuing Medical Education credits. This makes it less attractive to physicians to take the time to go through it. And it says that "Medscape [which sponsors the course] can not attest to the timeliness of expired CME activities." This disclaimer would certainly add to any physician's concerns about the course.

It states that there are 4 million people with CFS in the US, implying that it accepts the Reeves criteria for diagnosis.

It says that there are no laboratory tests or diagnostic markers. The list of lab tests that it suggests should be done are very basic tests. It doesn't include tests such as RNAse-L, NK function and tilt table tests (among others), which, if not definitively diagnostic, are certainly highly suggestive of ME/CFS.

It makes no mention of testing for chronic viral infections or that some patients have benefitted from antivirals.

It references the Reeves (2005) definition and describes it as a reliable diagnostic algorithm for CFS, especially in adults.

#3 on the list of therapies is a suggestion to refer patients and their families to professional counselling.

#5 on the list of therapies is to consider cognitive behavioral therapy.

This is what you get when you go to their home page, click on "Professional Resources" then click on "Earn Continuing Medical Education Credits" -- which you can't actually earn because the course has expired. This is what's on their web page tonight, not what they've done in the past. There's some good information, too, but these are BIG problems. There are other problems, too, but I'm not up to an exhaustive analysis right now.

I have to agree with Koan's link to the Dixie Chicks. I'm not ready to make nice. The bottom line is not just what we say to the CAA, but who we give money to and how they spend it. With all due respect to the board members who have donated their time and energy to interacting with us on this forum (and I am very grateful to them for doing it), the CAA has to do better than this before they get my money. I personally am not willing to pay an organization to misinform physicians about ME/CFS. Saying there are 4 million CFS patients in the US is a deal breaker for me. Get Reeves' number off the website!!!! Then maybe we can talk.

 

[jspotila]

Medscape CME

The Medscape CME course was written with the assistance of Dr. Cindy Bateman and Dr. Charles Lapp in 2008. The Association raised private donations to cover the cost of course development and placement on Medscape. The course could be taken for CME credit for twelve months.

If a small non-profit was able to raise the money to put a course on Medscape - one of the most respected venues for CME courses in the US - then shouldn't we wonder why the CDC didn't do it? Why is CDC's course, created years earlier, still on the CDC website?

The Association certainly wonders. That's why we declined to renew the provider education contract with CDC. We knew we could do a better job. The Phantom suggests we change the CME materials, or renew the course for another year. That costs money. The Association has to make choices every day about the best way to spend the donations we receive from people affected by CFS. We take that stewardship very seriously, and so both the Board and staff work hard to identify what is most needed. We can't do everything that needs to be done. We believe that research, and a public policy effort to support research, is the most important, most needed work in CFS right now.

 

[starryeyes]

The Phantom wrote: This is what you get when you go to their home page, click on "Professional Resources" then click on "Earn Continuing Medical Education Credits" -- which you can't actually earn because the course has expired.

Oh Thank Heaven for small miracles! Hopefully less doctors will be exposed to the CAAs contradictory materials that really do push CBT and GET. They say, if we don't do them we can't get well. See my thread: The CAA Pamphlet to Educate Doctors.

 

[Cort]

I don't think it says that! You'd have to say that all those other treatments they mention including the one many of us are putting our hopes in - Dr. Peterson - are bogus! Its just one of a group is it not?

 

[The Phantom]

The Medscape CME course was written with the assistance of Dr. Cindy Bateman and Dr. Charles Lapp in 2008. The Association raised private donations to cover the cost of course development and placement on Medscape. The course could be taken for CME credit for twelve months.

If a small non-profit was able to raise the money to put a course on Medscape - one of the most respected venues for CME courses in the US - then shouldn't we wonder why the CDC didn't do it? Why is CDC's course, created years earlier, still on the CDC website?

The Association certainly wonders. That's why we declined to renew the provider education contract with CDC. We knew we could do a better job. The Phantom suggests we change the CME materials, or renew the course for another year. That costs money. The Association has to make choices every day about the best way to spend the donations we receive from people affected by CFS. We take that stewardship very seriously, and so both the Board and staff work hard to identify what is most needed. We can't do everything that needs to be done. We believe that research, and a public policy effort to support research, is the most important, most needed work in CFS right now.

Hi,

I hope you had a merry Christmas.

I agree that the CDC course should be taken off its website. However, I think if I were on the board of the CAA I would be suggesting that the CAA's CME course be removed from the CAA's website as well. It's currently serving no purpose (since physicians can no longer get credit for taking the course) and, in fact, is giving information to physicians that is misleading and potentially dangerous to patients.

The recommendations for CBT and GET have been refuted by Frank N.M. Twisk and Michael Maes, "A review on cognitive behavorial therapy (CBT)
and graded exercise therapy (GET) in myalgic
encephalomyelitis (ME) / chronic fatigue syndrome
(CFS): CBT/GET is not only ineffective and not
evidence-based, but also potentially harmful for
many patients with ME/CFS", Neuroendocrinol Lett 2009; 30(3): 284299. In this article, they make it clear that the Cochrane Review of CBT/GET studies included mostly patients with Idiopathic Chronic Fatigue, not ME/CFS. In other words, the study subjects were chosen using the Oxford Criteria, not the Fukuda or Canadian Consensus criteria. They also summarize the evidence for detrimental effects of exercise programs for people with ME/CFS. It's surprising to me that Drs. Bateman and Lapp were not aware of the criteria problem even in 2008, before the Twisk & Maes article was published, but I suppose they're busy practitioners and may not have been. Still, I do expect the staff of an advocacy organization to be very aware of possible methodological problems with research, especially when the organization is committed to funding research itself. If Drs. Bateman & Lapp weren't aware of the problem the staff could have enlightened them. Patients were aware of the problem, and were discussing it, long before 2008.

The article by Jason, Najar, Porter, and Reh, Evaluating the Centers for Disease Controls Empirical Chronic Fatigue
Syndrome Case Definition 2009; Journal of Disability Policy Studies, 20:2, 93100 was also published after the CME article was written. This study showed that the "empirical definition" misclassified 38% of people with Major Depressive Disorder and identified them as having CFS, illustrating the problem with this definition. However, it's quite surprising that the CAA itself was not already alarmed in 2008 by the sudden increase in the number of people with ME/CFS using the "empirical" definition: from around 1 million to 4 million. It's disturbing to see this number quoted in the CME article. To me, it demonstrates a fundamental misunderstanding of who the patients are that have ME/CFS and what their needs are. This is not a small error. This is not an error one makes because one has made the decision to focus on "research, and a public policy effort to support research". Effective research and public policy cannot be done if the illness that is being researched and advocated for is not defined correctly and well understood by the advocacy group.

I think that, if I were a board member of an advocacy group and wanted my group to reclaim lost credibility among its potential contributors, I would be inclined to say, "Thank you for pointing this out. Perhaps we have made an error. I will convey this information immediately to people involved in maintaining the accuracy of our website and we will consider what to do to improve the situation."

I don't know if you've looked at the thread called The CAA Pamphlet to Educate Doctors started by Teejkay. It's about a different, but similar, document on the CAA website. It can be found here: http://forums.aboutmecfs.org/showthread.php?t=1911. I don't think I saw any posts from you there, but I might have missed something. If you've read it you know that there are some strong feelings expressed there about the CAA and its physician education program. Fresh Eyes asked if you knew about this pamphlet in post #423 above. If it's too much for you to go through all of the posts (it tired me out today), perhaps someone on the CAA staff could read it. In my opinion, it would be wise to take the pamphlet off the website and revise it.

Here's to a healthier, happier and ever more informed and effective new year!

 

[The Phantom]

I don't think it says that! You'd have to say that all those other treatments they mention including the one many of us are putting our hopes in - Dr. Peterson - are bogus! Its just one of a group is it not?

Hi Cort,

I'm not sure what you're referring to here. Could you clarify?

Happy New Year!

 

[_Kim_]

Hi Cort,

I'm not sure what you're referring to here. Could you clarify?

Happy New Year!

Cort, it was requested on the CAA pamphlet that you use the quote function when responding to a post. I second that request. It's hard enough to follow a discussion of this length and importance without having to page back to guess at what post you are referring to.

Thanks.

 

[starryeyes]

This is from the other thread where fresh eyes rightly asked us to take our gripes about the CAA to the ongoing thread about it:

I wrote:
Great. So if you happen to live in the U.S. and you have CFIDS then you will be labeled with CFS which no doctor or nurse or any other medical professional should ever consider being the same as Myalgic Encephalomyelitis but instead should encourage you to exercise and get mind treatments. Clearly, we're all just a bunch of malingering idiots who have nothing really wrong with us. We're just tired.

Does this make you angry?

Where is the CAA???!! They're supposed to be our patient organization!

Cort and Martlet, you both completely misunderstood what I was saying. What I am saying is that the CAA should be involved in the changing of the diagnostic criteria. I don't ever tell doctors I have ME. You have to understand the politics of this situation to realize what I was saying.

ME agenda said that officially ME is not considered synonymous with CFS. Well it should be. The CAA should be educating the medical world that ME is synonymous with CFS. Maybe they don't believe it is. That would explain why the official name for CFS in the U.S. was changed to ME/CFS several years ago but instead of using the official name, the CAA changed their name to CFIDS.

Cort, do you really think it's okay for the CAA to be posting this junk?

From the CAA: One theory about the cause of this hypocortisolism is that it occurs well into the course of CFS due to factors such as inactivity, sleep disturbance, chronic stress and deconditioning.

The investigators measured the coritsol output of 41 CFS patients prior to and following six months of cognitive behavioral therapy (CBT). The results suggested that CBT treatment increased cortisol output, perhaps through its effects on sleep, stress response and physical activity levels. The investigators note that this study was not a clinical trial of CBT as a remedy for CFS, but rather a look at whether the hypocortisolism associated with CFS could be a secondary result of the illness and one that can be mediated. If further study shows that low cortisol levels can be increased through better sleep, more physical activity and/or better stress management, this could be viable treatment information for patients.

Wessely S

I think those who agree with this study and/or responded to the CBT they used are suffering from inactivity, chronic stress and deconditioning. I suffer from ME/CFS. This doesn't apply to me. The CAA is being very irresponsible in including “studies” like this on their website. This is the very thing that harms PWC.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On the thread about Diagnostic criteria Cort wrote:

The twitching muscles, as I remember, were more like muscle spasms.

Maybe for you but in my case I started having severe muscle spasms and still do after coming down with CEBV and I also started have in major muscle twitching and still do. They are distinctly different symptoms from each other.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In this thread Cort wrote:

I don't think it says that! You'd have to say that all those other treatments they mention including the one many of us are putting our hopes in - Dr. Peterson - are bogus! Its just one of a group is it not?

Once again, you misunderstood me. That's why I referred people to the thread I started about the CAA CME packet.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In a recent note by Suzy Chapman on Co-Cure, she quotes Dr Charles Shepherd as writing

"...Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material - stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any.

This is where the CAA should be coming into the picture. They should be putting out articles condemning this kind of testing and they should be explaining this situation as much as possible right now.

Cort wrote: You don't typically have an initial paralysis that resolves itself or strongly twitching muscle groups etc. either - which as I remember happened fairly frequently in [ME] outbreaks.

There was another gal who lived on my street that came down with ME/CFS the same time I did. How many others around me did? Who knows. Yes, strongly twitching muscle groups have been one of my symptoms with ME/CFS.

From the CME course that Cort posted: Patients can learn to modify their activities to avoid postexertional malaise and therefore improve their health status and function.

That's a lie.

From the CME course that Cort posted: It is essential that rest and activity are balanced to avoid both deconditioning from lack of activity and flare-ups of illness due to overexertion.

This doesn't go near far enough in explaining the complexity of the situation.

 

[Dolphin]

Cort, do you really think it's okay for the CAA to be posting this junk?

From the CAA: One theory about the cause of this hypocortisolism is that it occurs well into the course of CFS due to factors such as inactivity, sleep disturbance, chronic stress and deconditioning.

The investigators measured the coritsol output of 41 CFS patients prior to and following six months of cognitive behavioral therapy (CBT). The results suggested that CBT treatment increased cortisol output, perhaps through its effects on sleep, stress response and physical activity levels. The investigators note that this study was not a clinical trial of CBT as a remedy for CFS, but rather a look at whether the hypocortisolism associated with CFS could be a secondary result of the illness and one that can be mediated. If further study shows that low cortisol levels can be increased through better sleep, more physical activity and/or better stress management, this could be viable treatment information for patients.

Wessely S

Here is an article that came out this year that contradicts it to some extent:

Does hypocortisolism predict a poor response to cognitive behavioural therapy in chronic fatigue syndrome?

Psychol Med. 2009 Jul 17:1-8. [Epub ahead of print]

Roberts AD, Charler ML, Papadopoulos A, Wessely S, Chalder T, Cleare AJ.

King's College London, Institute of Psychiatry, Department of Psychological Medicine, London, UK.

BACKGROUND: There is evidence that patients with chronic fatigue syndrome (CFS) have mild hypocortisolism. The clinical significance of this is unclear. We aimed to determine whether hypocortisolism exerted any effect on the response of CFS to cognitive behavioural therapy (CBT).

Method: We measured 24-h urinary free cortisol (UFC) in 84 patients with Centers for Disease Control and Prevention (CDC)-defined CFS (of whom 64 were free from psychotropic medication) who then received CBT in a specialist, tertiary out-patient clinic as part of their usual clinical care. We also measured salivary cortisol output from 0800 to 2000 h in a subsample of 56 psychotropic medication-free patients.

RESULTS: Overall, 39% of patients responded to CBT after 6 months of treatment. Lower 24-h UFC output was associated with a poorer response to CBT but only in psychotropic medication-free patients. A flattened diurnal profile of salivary cortisol was also associated with a poor response to CBT.

CONCLUSIONS: Low cortisol is of clinical relevance in CFS, as it is associated with a poorer response to CBT. Hypocortisolism could be one of several maintaining factors that interact in the persistence of CFS.

PMID: 19607750 [PubMed - as supplied by publisher]

The interesting thing is that Cleare presented this at a conference in early 2003 but they clearly didn't rush publishing it or drew attention to it in their writings since then.
Another example of why one shouldn't trust the Wessely/Sharpe/White School of Thought people.

 

[starryeyes]

Thank you for posting that Tom and your sig is helpful too.

Hope you had nice holidays.

tee

 

[Marylib]

for Teej

Teej,

My brain is not working so well, so I am asking if I have gleaned the following info correctly:

The CAA is citing Peter White as one of their experts? And they are citing Graded Excercise Therapy as generally helpful for ME/CFS?

Thanks Teej and hope you had good holidays. Holidays do me in.

 

[Dr. Yes]

Hi Marylib

My brain is not working so well, so I am asking if I have gleaned the following info correctly:

The CAA is citing Peter White as one of their experts? And they are citing Graded Excercise Therapy as generally helpful for ME/CFS?

Yes, and yes.

In one of their brochures intended to educate physicians about CFS.

That's enough to make anyone wonder if their brain is working well!

 

[Cort]

From the CAA: One theory about the cause of this hypocortisolism is that it occurs well into the course of CFS due to factors such as inactivity, sleep disturbance, chronic stress and deconditioning.

I think this is the good news about cortisol; that its possibly due to poor sleep, chronic stress, deconditioning and inactivity. Why is that a negative thing? Really sick patients can't sleep well, are very inactive - are deconditioned as a result of that and are obviously under chronic stress. That is the picture of severe CFS.

Note that there's nothing in there about psychological issues or poor coping. What is the matter with that?

 

[Cort]

The CAA should be educating the medical world that ME is synonymous with CFS. Maybe they don't believe it is. That would explain why the official name for CFS in the U.S. was changed to ME/CFS several years ago but instead of using the official name, the CAA changed their name to CFIDS.

As I noted before Dr. Cheney, Dr. Klimas, Dr. Peterson, Dr. Bateman, Dr. Komaroff and other members of the Fair Name Campaign for CFS all agreed that trying to change the name to myalgic encephalomyelitis would be a disaster. Instead they all backed ME/CFS.

The official name for CFS in the US is CFS not ME/CFS. ME/CFS wasn't even a suggestion when, many years ago, the CAA changed their name to the CFIDS Foundation.