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

[MEKoan]

Indeed! That was my intention.

 

[Dolphin]

People interested in the CAA/CDC education programs may find these two papers of interest.

Go to: http://www.biomedcentral.com/1472-6920/8/49 to get full free text

BMC Med Educ. 2008 Oct 15;8:49.

A train-the-trainer education and promotion program: chronic fatigue syndrome--a diagnostic and management challenge.
Brimmer DJ, McCleary KK, Lupton TA, Faryna KM, Hynes K, Reeves WC.

Division of Viral and Rickettsial Diseases, Centers for Disease Control and Prevention, Atlanta, GA, USA. dyv4@cdc.gov

BACKGROUND: Chronic fatigue syndrome (CFS) is a complicated illness for providers and patients. Fewer than 20% of persons with CFS have been diagnosed and treated. For providers, compounding the issue are the challenges in making a diagnosis due to the lack of a biomedical marker.

METHODS: The objective of the CFS diagnosis and management curriculum was to instruct core trainers as to the evaluation, diagnosis, and management of CFS. Over a two year period, 79 primary care physicians, physician assistants, and nurse practitioners from diverse regions in the U.S. participated as core trainers in a two day Train-the-Trainer (TTT) workshop. As core trainers, the workshop participants were expected to show increases in knowledge, self-efficacy, and management skills with the primary goal of conducting secondary presentations.

RESULTS: The optimal goal for each core trainer to present secondary training to 50 persons in the health care field was not reached. However, the combined core trainer group successfully reached 2064 primary care providers. Eighty-two percent of core trainers responded "Very good" or "Excellent" in a post-tessurvey of self-efficacy expectation and CFS diagnosis. Data from the Chicago workshops showed significant improvement on the Primary Care Opinion Survey (p < 0.01) and on the Relevance and Responsibility Factors of the CAT survey (p = 0.03 and p = 0.04, respectively). Dallas workshop data show a significant change from pre- to post-test scores on the CFS Knowledge test (p = 0.001). Qualitative and process evaluation data revealed that target audience and administrative barriers impacted secondary training feasibility.

CONCLUSION: Data show the workshop was successful in meeting the objectives of increasing CFS knowledge and raising perceived self-efficacy towards making a diagnosis. The CFS TTT program informed an educational provider project by shifting the format for physicians to grand rounds and continuing medical education design while retaining TTT aspects for nurse practitioners and physicians assistants. Evaluations also indicate that secondary trainings may be more readily employed and accepted if administrative barriers are addressed early in the planning phases.

PMID: 18922184

BMC Med Educ. 2009 Dec 2;9(1):70. [Epub ahead of print]

Continuing Medical Education Challenges in Chronic Fatigue Syndrome.
Brimmer DJ, McCleary KK, Lupton TA, Faryna KM, Reeves WC.

ABSTRACT:

BACKGROUND: Chronic fatigue syndrome (CFS) affects at least 4 million people in the United States, yet only 16% of people with CFS have received a diagnosis or medical care for their illness. Educating health care professionals about the diagnosis and management of CFS may help to reduce population morbidity associated with CFS.

METHODS: This report presents findings over a 5-year period from May 2000 to June 2006 during which we developed and implemented a health care professional educational program. The objective of the program was to distribute CFS continuing education materials to providers at professional conferences, offer online continuing education credits in different formats (e.g., print, video, and online), and evaluate the number of accreditation certificates awarded.

RESULTS: We found that smaller conference size (OR = 80.17; 95% CI 8.80, 730.25), CFS illness related target audiences (OR = 36.0; 95% CI 2.94, 436.34), and conferences in which CFS research was highlighted (OR = 4.15; 95% CI 1.16, 14.83) significantly contributed to higher dissemination levels, as measured by visit rates to the education booth. While print and online courses were equally requested for continuing education credit opportunities, the online course resulted in 84% of the overall award certificates, compared to 14% for the print course. This remained consistent across all provider occupations: physicians, nurses, physician assistants, and allied health professionals.

CONCLUSIONS: These findings suggest that educational programs promoting materials at conferences may increase dissemination efforts by targeting audiences, examining conference characteristics, and promoting online continuing education forums.

KEYWORDS: CFS, continuing medical education, primary care/generalist education, chronic disease, allied health profession.

PMID: 19954535

Go to: http://www.biomedcentral.com/1472-6920/9/70 to get full free text

The good thing about these BioMedCentral journals is that one can post comments on them. I am surprised more people don't do this. I've posted dozens. It's like writing a "letter to the editor" but a lot less work. Many comments some people write are just a few lines. My comment on the former was fairly short: http://www.biomedcentral.com/1472-6920/8/49/comments although did use references - a lot of people don't bother.

In the latter case, it's a provisional pdf. I think I found before I sent a comment with a provisional pdf and they didn't put it up. So if anyone writes one, best to wait till they put up the final draft (which will most likely be the same or virtually the same). But it might only be a few weeks.

 

[MEKoan]

From Dr. Susan Vernon Update Statement XMRV thread

That doesnt mean though that they're not getting important work done behind the scenes. You've probably never heard of their physician education they initiated on Medscape last year. They broke with the CDC to do that. Its trained over 35,000 physicians each of which is believed to see about 5 CFS patients a week. That's alot of patients getting better care every week - thats progress.

TomK provided links to reports regarding doc.s, and other health care providers trained but I can't find the numbers to add up to 35,000. Doesn't mean they aren't there, of course



Ok, so before I ask the CAA to compile a list of these 35,000 "physicians", or at least those who wish to sign on to said list, I think I should be able to substantiate the numbers.

I'm confused. I ask your indulgence. Where to I confirm the 35,000 physicians?

 

[Stuart]

Have you even read the CME's?

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 researchers 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 Bernes extensive CFS/FM Checklist and spend time on a number of web sites including Phoenix Rising, the fact is they dont have time, and they take these CMEs 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.

 

[mvwu]

Exchange with JSpotila, Chair of the CAA

Putting together several observations:
--many members believe that the CAA doesnt listen to patient input,
--there are a number of ideas here that could use a direct response,
--the Chairman of the Board, Jennie Spotila, is reading and participating in this forum.

Perhaps Jennie Spotila would be willing, if we were to start another thread devoted only to concrete suggestions for change, to respond to those suggestions.

Jennie, would you? You could say, Hey, great idea, Ill take that one to the board. Or, Ill talk to Suzanne Vernon about that. Or, Good idea. Actually we are already doing that. See this link. And so on.

I am willing, and as Cort mentioned I am already reviewing the materials Khaly collected as well.

On a personal note, I am very ill. I have an average of two functional hours a day, and so I will not be a constant presence on the boards. It may take me awhile to respond to questions, but I promise you that I will respond. Also, my term as chairman ends on December 31st. I will remain on the Board (secretary in 2010), and I will continue to participate here and in other dialogues. But between the holidays, and working on the hand over the chairmanship to Adam Lesser, I am stretched very very thin.

I will be here, I will be reading, and I will pass on your suggestions and criticisms to the Board and/or staff. I will do my very best to respond to your questions.

Thank you so much, Jennie, for your responsiveness, to this suggestion and to others. Ill set up a thread called Suggestions for change at the CAA? Post here."

Im very sorry you are so ill. Im glad you told us though, so we can set our expectations for response accordingly.

 

[Stuart]

Nothing to educate doctors with?

The main problem with education is there is essentially nothing to educate doctors with. It boils down to- there is no diagnostic test, and there is no treatment.

That is why research has to come first. Research produces the content of education. Unless you're specifically educating new researchers.

If XMRV gets confirmed, and then further studies show causality, and then they study and find treatments, then there will be content to educate doctors with.

If there is nothing to educate doctors with then why the three CMEs? Why indeed even this site and others? The CMEs have a long reference of research studies, the point is much of it is bad.

Why do CFS docs order tests if there are none? In fact there are many systemic dysfunctions that lab work can identify. There is no ONE test that says you have CFS and nothing else.

Yes there are treatments, many of them, entire protocols, this is much of the reason we are here to discuss those we have tried, evaluate their efficacy, and give referrals and refine treatments we are using.

Sorry Martha, you’re coming acrossed as an apologist without any facts, and complaining is a responsible action to initiate change.

 

[Marylib]

Not true!

The main problem with education is there is essentially nothing to educate doctors with. It boils down to- there is no diagnostic test, and there is no treatment.

Charity,

Please go to the facebook site of Dr Lapp and Dr. Black at the Hunter-Hopkins Center. There is info there you can look at today that can help educate doctors already about diagnosis and treatment. Our specialist Dr. Ros Vallings travels NZ trying to educate physicians about treating ME/CFS and is succeeding. We in NZ have brought both Dr Klimas and Dr. Lapp here to speak at our medical school and they have had plenty to speak about to physicians and medical students.

 

[Marylib]

Treatment

If those unspecified treatments you're talking about are so good, why are 99% of people not well yet?

True, there is no cure yet. But doctors are able to help us sometimes by treating and managing the symptoms. I have had a great deal of help. And in countries with social services, doctors are able to help us access them. Believe me, this is an essential lifeline for many people here in NZ.

 

[Marylib]

Lapp and Black

Ask Dr. Black through Facebook.

 

[Stuart]

Non sequitur

Quote:
Originally Posted by Stuart
If there is nothing to educate doctors with then why the three CMEs? Why indeed even this site and others? The CMEs have a long reference of research studies, the point is much of it is bad.

Why do CFS docs order tests if there are none? In fact there are many systemic dysfunctions that lab work can identify. There is no ONE test that says you have CFS and nothing else.

Yes there are treatments, many of them, entire protocols, this is much of the reason we are here to discuss those we have tried, evaluate their efficacy, and give referrals and refine treatments we are using.

Sorry Martha, youre coming acrossed as an apologist without any facts, and complaining is a responsible action to initiate change.

Your first paragraph was my point.

If those unspecified treatments you're talking about are so good, why are 99% of people not well yet? Most of us don't get treatment information from the CME anyway. Why do you think the WPI is doing the work they are doing???

Sorry, but just because someone appears to disagree with you (on this topic, I'm not even disagreeing with you), doesn't mean we're flacks for the CAA or an apologist or whatnot. I certainly am not calling you one even though I don't understand your opinion.

Wow, now I am really confused, you must be mixing up a number of posts, where in your quote of my post do I state in my first paragraph what you are saying about treatments? My first paragraph was to show that there are contrary to your statement plenty to educate doctors with and that the CME materials by the CAA and CDC are based upon bad data and ideas.

Again, I point out you are incorrect in your assertion that there are no tests or treatments, I further mention that much of this site has been discussing both tests and treatments, did I claim they were effective or curative? No, I claimed we need to assess what may work for some and if we should try it.

Your statement that 99% are not well yet would be contrary to the CME assertion that 40-60% do recover with treatment. I am taking points such as that from these materials to show they are faulty and need to be changed. It makes no sense to say the problem with education is there is nothing to educate with, no treatment, no tests. That is not a disagreement of opinion, that is a statement of fact.

 

[Kati]

Educating the doctors

There are a handful of doctors out there to pick information from. There are great ressources for doctors, but they need to look for them. Unfortunaltely, very likely they will look first at the CDC for guidance and since they have no time, they stop there.

List of Dr with great knowledge:

Dr Peterson
Dr Cheney
Dr Lapp
Dr Hyde (www.nightingale.ca)
Dr Nancy Klimas
Dr Mikovits
Dr Elanor Stein (psychiatrist in Calgary, specializing in ME and fibro)
Dr Kerr
Dr Komaroff

and I don`t know a few.

In my opinion, there need to be a site directing the doctors to the essential pathology and physiology of ME, and management from the neurological, immunologic, endocrine and cardiac points of view.

Nancy Klimas and WPI are aiming at educating doctors by having some kind of residency or fellowship built in their practices, and this is positive steps in the right direction.

I also agree that the caa online training for doctors looks pretty anemic and is not helpful into understanding much about the complexities of the disease.

 

[Stuart]

Complexity and Heterogeneneity

Charity, thanks for the clarification. I don't think there will ever be a single definitive test. XMRV tests will never be definitive for ME/CFS, it is definitive for XMRV. The fact is 3.7% of healthy control tested positive. Dr. Coffin reported a more recent study where of breast tumor biopsies were XMRV positive.

It is still possible that XMRV is causative, but maybe only a subset of patients. The mechanisms of dysfunction are complex and many, other injuries may produce the same or similar results. There will likely be a decision tree at some point that does something to suggest why you would use certain tests. The genetic subsets described so far in CFS may help differentiate the tests and treatment paths.

This potential for a heterogeneous disease that expresses itself differently in different patients is exactly why research may never bring you the conclusive results you are looking for. In many diseases you have an operational model and you work with it as long as it works for enough patients, for others they seek innovators, in fact for the so called Orphan Diseases ones who have so few patients that no meaningful studies could ever be done, all they have is an operational model and innovation to treat with, you hope for doctors and researchers who make brilliant leaps of thought.

It was the RNAse-L immune pathway test results for very sick CFS patients meeting the Fukuda & Canadian Criteria that led Dr. Mikovits to making the leap that prostate cancer patients with a similar defect might mean that they may have XMRV since much of the dysfunctions and chronic infections in CFS patients can be explained by a retrovirus.

Some treatments will never get a funded study because there is no money to be made in it. I have had doctors who get on their own professional chat sites to ask other doctors what treatments they have had good luck with, doctors are doing the same thing we are doing, taking anecdotal information with a bit of a rationale for it and seeing if it works on their patient.

If XMRV is causative for some ME/CFS patients, I dont see a cure, more like ongoing treatment as with AIDS patients, you cant get rid of the retrovirus it spliced itself into your DNA. The various damage done to patients systems means the damage has to be treated as well. Dr. Cheney has had patients improve their Diastolic Dysfuction, but if as Dr. Enlander reported in a lecture at the recent New Jersey Conference a common coinfection of HHV-6 seems to go out of circulation and reside in the brain and the myocyte of the heart (the pacemaker), this will do its own damage as will other coinfections and systems under assault.

Permanent damage may occur in patients that may be addressed by some other treatment or therapy, even after an infection is cleared, if it can be. So there are layers upon layers to check the patient for the extent of disease, the damage to systems, and treatments to address them, and what works in one patient may not work for another.

 

[fresh_eyes]

Dr. Coffin reported a more recent study where of breast tumor biopsies were XMRV positive.

FWIW Coffin misspoke there - he meant to say prostate tumors.

 

[Katie]

Katie, really great analysis, especially for a bull with a bad hangover! confused:) Your ability to look ahead is very impressive.

Right now, I'm particularly interested in your conclusion: "We've just got to decide if it's the best thing for XMRV- to try and hang on XMRV's coattails or go it alone and find their own answers through their own advocacy group with a definate message 'please don't leave us behind'."

I think we need to change public perception of "CFS" (I know, I'm harping on that today, sorry) so that it won't be an albatross around anybody's neck, and then ride those coattails like there's no tomorrow. (Mixed metaphors, anyone?)

Well if you want to achieve that then you've got to push the phrase 'XAND is ust subset of ME/CFS' like it's the only words you know. If we can divide ourselves into subsets but remain as a cohesive whole (but renamed, we need a more appropriate name to reflect us, as well as the subsets nature). This is something that can be communicated to the media but I think XMRV is going to be 'The New HIV' (like white is the new black ) and unless a holistic message of neglect is shown by the CFS community as a whole, not just the XANDers, we might be able to get round this, but I can see CFS voices being drowned out and doubt about their legitimacy being banded round by those with little understanding.

I'm still not convinced that XMRV- folk won't be better served in the long run with their own group focused on genes, virology and a few other things, not just retrovirology. I worry that XMRV has the potential to be a crashing wave of excitement in diseases beyond ME/CFS. Autism alone is hugely funded, so many doctors and researchers will want to work in this arena, who is going to keep looking while all this is going on?


I'm going to check out your rebranding thread and see what's been posted on there through the night, if you haven't already I might post our bits on here over there for discussion but I'm still quite sleepy after getting a better nights sleep than usual.

 

[blackbird]

If we can divide ourselves into subsets but remain as a cohesive whole (but renamed, we need a more appropriate name to reflect us, as well as the subsets nature).

How about Umbrella Syndrome?

Stick together as a big group for strength in numbers.

All of US.
Rather than just ME.

I for one, have lost faith in my diagnosis, so whether it be ME, XMRV, XAND, or any of the other conditions misdiagnosed and caught in the umbrella, I am definitely one of 'US'.

 

[Mark]

'We' won't be 'Us' for very long though, since as soon as people start testing XMRV+ they'll have a valid illness to jump ship to, and will be able to leave the CFS/ME world behind. The new XMRV world will get money thrown at it, leaving who-knows-what behind for XMRV- CFSers; some delightful new name will be chosen no doubt. Early poll results on this forum give an early estimate of this split as 50/50. If we want to speak as one voice on the politics of our experience in the years of CFS/ME, time for that is running out. I would hope to see the emerging XMRV+ calling for an end to the term CFS, and a fresh start - with much more research and support and an assumption of a physical cause - for those left behind with CFS and still without a real diagnosis.

 

[Dolphin]

TomK provided links to reports regarding doc.s, and other health care providers trained but I can't find the numbers to add up to 35,000. Doesn't mean they aren't there, of course



Ok, so before I ask the CAA to compile a list of these 35,000 "physicians", or at least those who wish to sign on to said list, I think I should be able to substantiate the numbers.

I'm confused. I ask your indulgence. Where to I confirm the 35,000 physicians?

I'm not sure what the figures are but the CAA have an online course (with Medscape as I recall) that is separate from the joint course with the CDC I highlighted.

BTW, not meaning to complain too much but I thought I'd note that at least one of the people (me) who did the Medscape course (and got a certificate one can print off) isn't a doctor or even a health professional. My guess is I'm not the only one.

 

[Katie]

How about Umbrella Syndrome?

Stick together as a big group for strength in numbers.

All of US.
Rather than just ME.

I for one, have lost faith in my diagnosis, so whether it be ME, XMRV, XAND, or any of the other conditions misdiagnosed and caught in the umbrella, I am definitely one of 'US'.

I like Umbrella Syndrome, you could easily tie that into a message that says 'figure us out please!'

Lol, I did also think about Resident Evil's Umbrella Corporation which made me wonder if there's another virus causing problems can we call it the T-Virus? Or G-Virus? Or T-Veronica Virus? lolol. I think the XAND lot may well go off and found their own group, I can't say I wouldn't do the same if I test positive. I will never foresake ME/CFS and I will continue to raise money for them, but it's going to be hard to keep together.

 

[MEKoan]

If XMRV proves to be found in the vast majority, but not all, PW ME/CFS, would not those who are not XMRV+ be atypical ME/CFS as there are those who are diagnosed with atypical MS - who now, of course, may be typical XAND?

I'm getting

 

[Katie]

If XMRV proves to be found in the vast majority, but not all, PW ME/CFS, would not those who are not XMRV+ be atypical ME/CFS as there are those who are diagnosed with atypical MS - who now, of course, may be typical XAND?

I'm getting

Wha'?


Nah, I'm of the opinion that CFS is not the name of a specific disease but the wastebasket that we're all sitting in until someone works out what we've really got. Therefore XAND is XAND and what ever is the next disease, let's call it the T-Virus for shiggles, will be T-Virus until we're all sorted into our catagories and CFS is no more.


But again, what I just wrote could be a huge... Wha?