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

[starryeyes]

Their financial reports are available on their website somewhere. As I recall donations and membership dues accounted for less than $200,000 (not enough to even cover Kim's and Suzanne's salaries) with a total budget of a couple million.

teejkay I just noticed your signature, the CAA really wrote "exercise programme"? Were they quoting someone? Obviously lifted from the literature of the British psych gang.

That's how it's written in their SPARK! materials. You think they just copied and pasted from the British CBT & GET propaganda?

 

[cfs since 1998]

That's how it's written in their SPARK! materials. You think they just copied and pasted from the British CBT & GET propaganda?

Either copied and pasted or written by a British psychologist I'm guessing. Why else would the CFIDS Association of *America* spell it "programme"? Something smells.

 

[starryeyes]

Something smells in Denmark alright.

It is interesting to keep seeing the bullet points of accomplishments - mostly from the last two years that the CAA has been reinventing itself, but have you even read the CMEs?

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
​

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 McCleary

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.

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.

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.

This includes the local teaching hospital and research clinic, Oregon Health Sciences University (OHSU) who refers patient to the Psychiatry (Adult Faculty Practice) Clinic http://www.ohsu.edu/xd/health/health-information/topic-by-id.cfm?ContentTypeId=85&ContentId=P00618
Their online education contains similarly outdated and wrong data sourced from the CDC http://www.ohsu.edu/edcomm/streamingmedia/channel.shtmlhttp://media.ohsu.edu/ramgen/sch/med/cam/panl122105.rm

These still smack of the Reeves / Wessely school which need to be purged, I am not sure how the CAA can say “oops, we goofed” and create a new meaningful CME, it certainly needs to be done.

Stuart pointed me to this post he wrote here back in December because he lost what he was just writing for this thread yesterday.

I haven't looked at all of the links here, only the Medscape one so far. I think Stuart makes good points here.

It's funny how the CAA never promotes these materials nor talks about CBT and GET in any of their newsmagazines that they send out to patients.

I am actually just blown away by these materials they've had out there to educate our doctors for the last couple of decades. They've really pulled a fast one on us.

 

[starryeyes]

Maarten I addressed your points:

Maarten wrote:

(1) They are probably mostly doing their best even if you disagree with them, and have a helluva job.

What we are suggesting they do wouldn't be much work for them. We want them to remove the CBT and GET and other disparaging remarks from their Continuing Medical Education materials. We'd do it for them for free if they'd let us.

(2) One of their major problems is to get heard, read or seen to exist at all, by medics & media.

There are many doctors who have gone through their CME programs.

(3) The CAA - apart from the quality of the public information they try to get read - cannot be held responsible for educating or miseducating doctors and others: Everybody if sane is himself or herself responsible for his or her (mis)educated beliefs (if acted upon or advocated publicly).

Actually, many people, including doctors, nurses etc.. do turn to the CAA education materials to learn how to cope with patients who have ME/CFS. And when they turn to sources like the CAA they believe them because CFS is very confusing.

(4) The perception of people with ME by the general public or the unclued medical doctor or psycho does not depend on patients' organisations but on the media and on standards and contents of the education they got in universities.

People in med school aren't being educated about CFS by our media nor by our universities but the CAA has been disseminating materials and giving learning credits to doctors for decades that teach our doctors to use CBT and GET on us as treatments.

For instance, the first link in the post above where I quoted Stuart says:

The web-based curriculum, CFS: A Primer for Allied Health Professionals provides a general overview of chronic fatigue syndrome (CFS) and specific information concerning the care of persons with CFS. The material was developed for allied health care professionals, particularly those working in the behavioral (psychologists, marriage and family counselors, psychiatric nurses and social workers) and rehabilitative (physical therapists, occupational therapists, exercise physiologists, personal trainers, chiropractors and massage therapists) disciplines. The information is also applicable to physicians, nurse practitioners and physician assistants, who have primary responsibility for diagnosis and management of CFS.

The average completion time for CFS: A Primer for Allied Health Professionals is 2.5 hours. Participants have the option to earn CME, CNE, CEU or CECH credits free of charge. We ask that you review the course information below before registering for the course.

This program provides information for use in clinical practice. Feedback on the course content and its usefulness is welcomed; please note your observations in the comment section of the course evaluation. For those who wish more in-depth information, references follow the course material.

 

[Dr. Yes]

Here's an excerpt from the Canadian Consensus document Overview that is relevant; the authors say the same things many of us have with regards to the use of the term CBT and its faulty definition; contrast the passage below with the CAA's position.

A hypothesis underlying the use of Cognitive Behaviour Therapy (CBT) for ME/CFS is based on the premise that the patient’s impairments are learned due to wrong thinking and “considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behaviour, and emotional processes. The patient merely has to change their thinking and their symptoms will be gone. According to this model, CBT should not only improve the quality of the patient’s life, but could be potentially curative” (46) . Supporters suggest that “ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes” (47) . Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of the patients’ symptoms, blame them for their illness, and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS. Further, their studies fail to cure or improve physiological impairments such as OI, sore throat, IBS, etc. Dr. A. Komaroff (48) , a Harvard based world authority, stated that the evidence of biological process “is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest”. Some physicians, who are cognizant of the biological pathophysiology of ME/CFS, teach patients coping skills but call them “CBT”. We urge such doctors to use the term “Self-Help Strategies” and avoid using the terms “Cognitive Behaviour Therapy” and “Cognitive Retraining Therapy”.

I'm guessing that this part of the document, at least, was not written by Nancy Klimas, as the last two sentences I highlighted could well be referring to her! That is, if she is still using the term (I think she is).

And the false hypothesis (a generous word) of "underlying psychiatric distress" that leads to "amplified" symptoms that Komaroff is referring to would apply to kinesophobia and other psychological issues (such as "inappropriate" concerns about relapse from exercise) that the current CME actually warns physicians about.

I have been given to believe that the CAA seems to value the views of those with professional reputations/ prestige over the views of their patient base. Okay...Given the prestige of this document and of the reputations of the specialists involved, shouldn't the debate about inclusion of "CBT" (not to mention "inappropriate beliefs") end here?

 

[Gerwyn]

Here's an excerpt from the Canadian Consensus document Overview that is relevant; the authors say the same things many of us have with regards to the use of the term CBT and its faulty definition; contrast the passage below with the CAA's position.


I'm guessing that this part of the document, at least, was not written by Nancy Klimas, as the last two sentences I highlighted could well be referring to her! That is, if she is still using the term (I think she is).

And the false hypothesis (a generous word) of "underlying psychiatric distress" that leads to "amplified" symptoms that Komaroff is referring to would apply to kinesophobia and other psychological issues (such as "inappropriate" concerns about relapse from exercise) that the current CME actually warns physicians about.

I have been given to believe that the CAA seems to value the views of those with professional reputations/ prestige over the views of their patient base. Okay...Given the prestige of this document and of the reputations of the specialists involved, shouldn't the debate about inclusion of "CBT" (not to mention "inappropriate beliefs") end here?

as i said dont use the term cbt at all period

 

[justinreilly]

Authors of the Canadian Consensus document, which couldn't be more different in some key ways from the parts of the CME I was criticizing, include Nancy Klimas, Dan Peterson, Kenny De Meirleir, and A. Martin Lerner. If the CAA wants to draw exclusively from well-known specialists for its CME, how about that line-up? Even more 'stellar'. Throwing in Cheney might be a good idea too...

Yes. And while they're throwing in Cheney, put this quote of his from back in 1987 to lead off the CME:

"These people who are attempting to prove this is a psychiatric disease are just dinosaurs. They're like the people who tried to prove the world was flat. They'll write their peer-reviewed papers, and one hundred years from now their graves will be desecrated." (Osler's Web, p.228)

 

[Cort]

IMO the CAA is responsible for miseducating our doctors and the public. I think it's partly their fault that we're being treated like lazy malingering hypochondriacs by our doctors and family, friends and the public.

ETA: It's been pointed out to me that we were being treated like this before the CAA was even in existence but I hold the CAA responsible for continuing these detrimental perceptions of us. They are a huge part of the problem. Look at the big picture. They are educating our doctors about CFS. How can they not be responsible for this perception of us? TEEJ

If you want to throw away that nuanced CME program because you don't like one section of it, of course, you have the ability to do that. I don't think that does anything for us. There is alot of great stuff in there - doctors who read will understand that CFS is real, physiological disorder. It was written by some OUR top physicians - so you're going to have throw them into mispercieving boat too. They are part of the hypchondriac promoting crowd.

Dr. Bateman, apparently, thought her sister - who had CFS and reported died of it- had hypochondria as well and took a deep breath and created a clinic devoted to hypochrondria. I guess that Dr. Lapp has devoted his career to treating malingerers as well. That's the logical to draw is it not - given that the quote above was taken from a post you wrote about how terrible the CME is.

 

[justinreilly]

teejkay I just noticed your signature, the CAA really wrote "exercise programme"? Were they quoting someone? Obviously lifted from the literature of the British psych gang.

That's how it's written in their SPARK! materials. You think they just copied and pasted from the British CBT & GET propaganda?

Ha, teej caught CAA copying their homework from Wessely.

 

[Cort]

from from the CAA info (someone else quoted this, i have not read through all the info yet):

>

It might be easy to not get too excited about it if you feel it is not about you. However this sort of nonsensical statement (re exercise phobia) needs challenging. This is not just because it is unsubstantiated CBT school rubbish, not just because the more severe a patient the more vulnerable they are to the abuse and ignorance of others (and at a time when they most need help), but also because this sort of thinking affects all of us.

[Edit: and the above statment gives the impression that peope become severe because of phobia. For people who are severe it could be very bad if everyone around them, that they are utterly dependent on, started to think this way, it could be a great excuse to neglect them and not meet basic needs.]

Once it is hinted at that some patients are phobically avoiding activity, the air of suspicion cloaks us all, whether we like it or not. Once this idea is out there at all as a serious idea, every time you see a new doctor, every time someone in authority makes a decision about your disability, housing, home help, testing or about any assistance you might apply for, they might have this niggling doubt at the back of their mind that maybe you could just do a bit more, and maybe you are just phobically avoiding activity, so maybe they are not helping you by giving you things.

There is no evidence that phobic avoidance of activity is a general problem in ME/CFS. Yes maybe you could find one in a million that fit this model to some extent (though if they have ME/CFS they still have a problem with exercise, whether they are phobic or not), but is it worth hanging the rest of us for this? This comment about phobia will only encourage and indulge the most ignorant doctors to feel that they were right all along, and it might put the idea into the heads of good doctors.



Well then that is a depression problem and not an ME/CFS one, and once the depression is dealt with they still have ME/CFS so need to be careful about not overdoing it.

<

No they will very likely get worse from trying to exercise, unless they are improving naturally. I have known people to try very gentle exercises when bedbound and it was an absolute fiasco. Like the rest of us, if the severe patient improves they will start to do more. They are not more severe because they are phobic but because of the nature of the illness (and I am not saying there is not the odd patient out there who couldn't manage better, but again why hang the vast majority for this?).



But there is no evidence that this is appropriate or helpful.



Well not as bad as ME/CFS. And the word deconditioning is thrown about far too much. Muscle wastage is almost unheard of in ME/CFS and blood clots are rare. One difference between ME/CFS patients and patients with paralysis is that ME/CFS patients are normally moving around to some extent so they avoid some of the problems typically associated with deconditioning.

There are also other ways around exercise for dealing with some potential problems in the very severe, for example using splints where necessary. But some physio's can even resist this if they think the patient needs encouragement to do exercises (I know of more than one person this has happened to. I remember reading of one case where splints were removed, and the patient ended up with a problem than they need not have had, all because the people treating the patient thought they should be excercising).

Maybe, when more is known about ME/CFS physiology physiotherapy can be more safely administered but at the moment they are basically clueless about what they are doing treatment-wise, and it is all a guessing game, and as far as I am concerned our guess is better than theirs.

Orla

Those are the doctors findings. They're not saying that curing kinesophobia is going to cure CFS! or that CFS is kinesiphobia (Imagine what a different document it would be). They're saying that for some patients they should be encouraged to move more. Nowhere in this document does it say that moving more - getting more exercise - is going to cure CFS. Hence the short focus on kinesphobia is only designed to improve quality of life in some patients.

That's my take. I don't see how a doctor could read this and come away with any other idea.

 

[justinreilly]

If you want to throw away that nuanced CME program because you don't like one section of it, of course, you have the ability to do that. I don't think that does anything for us. There is alot of great stuff in there - doctors who read will understand that CFS is real, physiological disorder. It was written by some OUR top physicians - so you're going to have throw them into mispercieving boat too. They are part of the hypchondriac promoting crowd.

Dr. Bateman, apparently, thought her sister - who had CFS and reported died of it- had hypochondria as well and took a deep breath and created a clinic devoted to hypochrondria. Dr. Lapp has devoted his career to treating malingerers.

I don't care who wrote it. If it's wrong, don't publish it.

 

[Cort]

"The key is patience--not doing too much at once and learning not to exceed the threshold that results in "payback" symptomsToday, 9 years after onset of CFS. I HAVE BICEPS.. I have lost 15 unwanted pounds. I look better and I feel better in some ways. Besides adding stamina and strength, exercise has reduced my pain"

Linda Milne, disabled 64 year old CFS patient

This is from a story of a very disabled patient of Dr. Bateman's who did improve using a very slow 'exercise' program.

 

[justinreilly]

The CME credits for the 'new' CAA CME programme have expired. But take heart, the CDC renewed the CME credits for its course authored by Reeves, Jones, McCleary, et al. through 2012. No physician is going to do a CME for no credit so doctors are back to studying the old POS.

I'm assuming CAA is able to get it renewed as CDC did theirs (and you can do this for law CLEs) and is just out to lunch as usual. Is it appropriate that we have to babysit someone paid $187K to help us?

 

[Cort]

I don't care who wrote it.

I think you should take into account who wrote it. If I come across something by someone that I trust that I don't quite get then I'm willing to check it out a bit more. I certainly trust Dr. Bateman. If she hasn't earned our trust then I don't who has - honestly.

 

[justinreilly]

I think you should take into account who wrote it. If I come across something by someone that I trust that I don't quite get then I'm willing to check it out a bit more. I certainly trust Dr. Bateman. If she hasn't earned our trust then I don't who has - honestly.

From what I know of her, I am impressed with her. I have trouble believing she or Dr. Lapp wrote this, it was probably another author. If they have their names on it though, I think that Dr. Bateman and Dr. Lapp should have looked it over and approved it prior to publication.

Orla had a good point about the terminology- "phobia" means an irrational fear resulting in panic if exposed to the object of the phobia. This is not true of ME patients. This is very obvious to everyone here except you.

My point was we can't have blind faith in the 'experts'. This is lesson one in the story of ME/CFIDS. If you know something is wrong or harmful, don't publish it even if it was written by an expert.

 

[Cort]

Lets see all what else the CME has.

Uncertainty about whether CFS is real. After more than 4000 research studies, there is now abundant scientific evidence that CFS is a real physiologic illness. It is not a form of depression or hypochondriasis.[9-11] A number of biologic abnormalities have been identified in people with CFS -- including abnormalities in the immune system, brain, HPA axis, cardiovascular system, autonomic nervous system, endocrine system, and energy metabolism -- but how they contribute to the illness is still unclear.[12]

Good

CFS patients often experience symptoms that are not diagnostic but that may contribute to overall morbidity.[22] These can include allergies, asthma, and sinus problems; loss of thermostatic stability (chills and night sweats, subnormal body temperature, intolerance of extreme heat or cold); transient numbness, tingling, or burning sensations in the face or extremities; lightheadedness, dizziness, balance problems, difficulty retaining upright posture (orthostatic instability), palpitations, or arrhythmias; irritable bowel, nausea, or abdominal pain; marked weight changes; psychological problems such as irritability, mood swings, depressed mood, anxiety, and panic attacks; sensitivity to medications, foods, chemicals, or odors; visual problems such as blurred vision, dry eyes, and photophobia; gynecologic problems such as PMS, vulvodynia, and endometriosis; and brain fog (word-finding difficulties, inability to comprehend/retain what is read, confusion, or disorientation).

Symptoms - check

 

[Cort]

Here they show how to differentiate CFS from Depression

Nancy reports 4 of the 8 case-defining symptoms. When questioned further, it's clear that her fatigue is worsened by both physical and mental activity, indicating postexertional malaise, a hallmark of CFS, so 5 of the symptoms are actually present. CFS should be highly considered as a diagnosis.

However, Nancy is also experiencing depression. Differentiating CFS from depression or major depressive disorder is one of the most challenging differential diagnoses to make. While certain symptoms of depression (fatigue, achiness, and sleep disturbance) overlap with those of CFS, the difference lies in the severity of symptoms. In this case, the fatigue is so severe that she is unable to maintain daily activities at home or at work, and if she pushes herself, she is markedly more fatigued for a day or two afterward. This postexertional malaise is typical of CFS, but it is infrequently seen in other disorders. Other clues to CFS are the rapid onset following a flu- or viral-like illness and the absence of depression prior to the illness. Additionally, depression will improve with counseling or antidepressants, but CFS is chronic; and while depression is usually responsive to traditional exercise therapy, CFS is usually worsened by that level of exertion. Lastly, patients with depression are hopeless and helpless, while CFS patients tend to be proactive and hopeful.

The telltale symptoms of CFS are profound exhaustion and postexertional malaise; significant muscle, joint, or headache pain; cognitive dysfunction; and sleep disturbance. Rule out other causes for the symptoms, and then apply internationally accepted case criteria to confirm the diagnosis. The occurrence of comorbid depression does not rule out a diagnosis of CFS. More than half of CFS patients become depressed at some point in the course of the illness.

And who wouldn't really??

 

[Cort]

CFS CME Course - Management Section http://cme.medscape.com/viewarticle/581527_5

2. Create a team/partnership approach. It's not uncommon for CFS patients to have consulted numerous clinicians and spent thousands of dollars seeking a diagnosis. This can cause distrust of the medical system, anger, and confusion -- all of which CFS patients may unconsciously bring into encounters with medical providers. Clinicians can defuse these past experiences with reassurances that they know CFS is a biologic illness, that they recognize CFS isn't a form of depression or hypochondria, and that they will work in partnership with patients to create an individualized treatment program.

Key Factors: Overwhelmed with illness and stress, many CFS patients adopt ineffective maladaptive coping mechanisms such as denial and avoidance. Others engage in an endless push-crash cycle, either because they are having difficulty adjusting to the limitations of their illness or because family, friends, and colleagues can't accept the illness. Still others catastrophize, spiraling themselves into a quagmire of self-pity and worsening depression. All of these maladaptive coping mechanisms delay effective management.

Hasn't everybody done this? Denied symptoms- tried to push through them; push-crash was my life for decades because I had trouble "adjusting to the limitations of my illness". I hated those limitations! Who wouldn't catastrophize at some point - brood over all the problems - I certainly have! Take on any disease for 10 years that untreatable and you're going to do some heavy brooding....

Remember this is ALL MANAGEMENT - CBT, etc. is in the Management not the Treatment Section.

 

[starryeyes]

If you want to throw away that nuanced CME program because you don't like one section of it, of course, you have the ability to do that. I don't think that does anything for us. There is alot of great stuff in there - doctors who read will understand that CFS is real, physiological disorder. It was written by some OUR top physicians - so you're going to have throw them into mispercieving boat too. They are part of the hypchondriac promoting crowd.

Dr. Bateman, apparently, thought her sister - who had CFS and reported died of it- had hypochondria as well and took a deep breath and created a clinic devoted to hypochrondria. I guess that Dr. Lapp has devoted his career to treating malingerers as well. That's the logical to draw is it not - given that the quote above was taken from a post you wrote about how terrible the CME is.

Did I say they need to throw away the whole program? No. I said they need to throw out the CBT and GET and they do.

Like I said before, most likely the parts that are good are written by the doctors.

 

[Cort]

Drugs and Supplements

CME - First a long list of drugs that can be helpful. Interestingly no antivirals - maybe that's coming up. Then a section on helpful supplements.

http://cme.medscape.com/viewarticle/581527_7

Monitor and address nutritional deficiencies when they occur. Abnormalities in various B vitamins, vitamin D, vitamin C, vitamin E, essential fatty acids, magnesium, zinc, sodium, L-tryptophan, L-carnitine, coenzyme Q-10, folic acid, and other nutrients have been found in subsets of CFS patients.[46] Often, levels are low borderline, but they can be significantly low or high in some patients. Deficiencies can cause similar symptomatology to CFS. For instance, low vitamin D can mimic an illness very similar to CFS. Deficiencies may also exacerbate symptoms. For instance, a vitamin B12 deficiency combined with CFS can amplify the pain patients experience. Dietary changes and nutritional supplements may help address these deficits.
Encourage patients to maintain a well-balanced diet and take a multivitamin daily to prevent nutritional deficiencies.
Guide patients in selecting supplements. While there have been few clinical trials to support the use of particular supplements, some may be efficacious. Studies have investigated or reported the use of oral NADH, high doses of vitamin B12, essential fatty acids, vitamin C, coenzyme Q10, and other supplements. These studies show inconsistent results, but symptom improvement was reported in some subjects.