Misinformation About a Disease Has Dire Consequences

[Nielk]

Dr. Lapp presented at the CDC Grand Rounds on February 16th, 2016 about the Clinical Presentation of Chronic Fatigue Syndrome. This presentation was for continuing medical education (CME) purposes and was watched by thousands of medical professionals.

MEadvocacy outlines the misinformation about myalgic encephalomyelitis that was taught by Dr. Lapp. This has been an ongoing problem with medical educational information coming out of the CDC. The CDC has been rebuked about their information by advocates and CFSAC voting members for many years, yet this failure to present the real facts about ME continues.

Read more and see the consequences of this medical misinformation here - http://www.meadvocacy.org/misinformation_about_a_disease_has_dire_consequences

 

[TiredSam]

This appears unduly harsh to me. I've watched the video and read the list of flawed information. Most items on that list seem like minor points. He can't cover everything you think he should in such a brief presentation. The only serious point I could see was:

He recommends behavioral modification (cognitive behavior therapy (CBT)), as well as graded exercise therapy as treatments (GET), i.e., the PACE treatment program which is at best, ineffective, and at worst, harmful

I think this is a misrepresentation of his position, he doesn't recommend anything like the PACE program with all its horrors. He mentions CBT as helpful to some patients to help cope with the illness. Some patients agree with him.

It's unfortunate that he uses the expression "Graded Exercise Therapy", but he certainly doesn't mean PACE-style pushing whilst ignoring your body when it tells you to stop. He means pacing as we know it, but also seems to be advising that mild cases should try to build up very slowly (30 seconds of exercise at a time) and stop immediately as soon as the body warns them it's too much. He explains it all here:

http://www.cfidsselfhelp.org/library/Lapp_on_pacing

I'm not sure I agree with him, but he certainly doesn't deserve to be linked to the BPS bollocks that is PACE because he's ill-advisedly used the phrase GET when describing his version of pacing.

 

[Nielk]

What I think is harsh is the perpetuating of outdated and wrong information about ME. This information at CDC and aided by some clinicians who present CDC's views, used to educate medical professionals throughout the United States, is the reason why most doctors have the wrong idea of what the disease actually is.

it doesn't matter what Dr. Lapp actually believes. There is so little education about the disease altogether and if this is the presentation that a clinician hears, they will have an outdated view of this disease just being about 'fatigue' and what patients need is antidepressant, CBT and GET.

If patients and advocates just allow this to continue without criticism, nothing will change.

 

[TiredSam]

What I think is harsh is the perpetuating of outdated and wrong information about ME.

I don't see how posting wrong information about Dr Lapp helps matters. Some items on that list are ridiculous - criticising the fact that he uses the name "chronic fatigue syndrome", objecting to his choice of picture of a tired woman. There are much bigger fish to fry at the moment without trumping up a list of minor objections to a short presentation by Dr Lapp.

it doesn't matter what Dr. Lapp actually believes.

Of course it does, do some research and choose your battles more sensibly.

 

[Nielk]

I don't see how posting wrong information about Dr Lapp helps matters. Some items on that list are ridiculous - criticising the fact that he uses the name "chronic fatigue syndrome", objecting to his choice of picture of a tired woman. There are much bigger fish to fry at the moment without trumping up a list of minor objections to a short presentation by Dr Lapp.

The miseducation of medical professional about the disease is one of the biggest problems that we have. That is the reason that patients are being mishandled by doctors nationwide. These are not minor objections. I don't think that disseminating the information below, is "a little fish".

 

[Undisclosed]

I am not sure where you got the following screenshot from @Nielk

I found the original -- http://www.medscape.org/viewarticle/759095_transcript

What was said has been altered:

 

[Nielk]

I am not sure where you got the following screenshot from @Nielk

View attachment 14855

I found the original -- http://www.medscape.org/viewarticle/759095_transcript

What was said has been altered:

View attachment 14856

@Kina
The quote is directly from the video of educational video linked in the blog. If you listen to the video, it is toward the end. It is quoted word for word.

 

[Undisclosed]

If you listen to the video, there are parts that are garbled, and the screenshot that you posted is still not representative of what was actually said. When I listen it matches the transcript that I posted if you listen carefully.

Good advocacy is not nit-picking and throwing physicians, researchers under the bus. Your advocacy group could have taken a seat at a table to educate all these people who you feel are failing us. Your group had a perfect chance to get in there and be heard. You declined. Why was that again?

 

[halcyon]

You declined. Why was that again?

Because if their input isn't accepted their name will still be on the end result as if they endorse it.

 

[Scarecrow]

If you listen to the video, it is toward the end. It is quoted word for word.

That is not word for word. Several words were mysteriously disappeared.

It is not OK to misrepresent someone by selective editing. If it was done knowingly and deliberately, it's dishonest. If not done deliberately, now that it has been brought to your attention, it's a good opportunity to ask whoever wrote it to correct it.

 

[barbc56]

Because if their input isn't accepted their name will still be on the end result as if they endorse it.

There may be some circumstances where boycotting is effective but I don't think it is in this particular situation.

If you participate and you disagree with the outcome at least you have the option to inform the public that you do disagree and explain why. You've achieved several worthwhile goals. You've contributed your view and it's made public.

Declining a chance to air those your views and then criticizing what happens after the fact only underminds a position.

The takeaway message is that the organization appears inflexible and dogmatic. If you don't have complete control over the flow of information, you stamp your feet, pick up your toys and leave the playground.

IMHO, that's not advocacy.

ETA The criticisms do seem to be a bit ridiculous. As @TiredSam said, pick your battles and look at the bigger picture.

This type of thinking is what we've been fighting and it looks bad to stoop to this level.

Let's hope the change in wording was an honest mistake.

 

[Sean]

choose your battles more sensibly.

There may be some circumstances where boycotting is effective but I don't think it is in this particular situation.

What they said.

Only serious concern I have with the study is Walitt, and I don't think that justifies boycotting the whole show.

 

[Valentijn]

I'd suggest being extremely careful about editing someone's words in such a manner. If you really think the garbled bits can't be understood, there should be an indication of that in the quote, such as "... [indistinct] ...". If text is removed between words, it should also be replaced with "...".

In this case, even a response from another speaker has been omitted, and the end of Lapp's first statement and the beginning of the 2nd statement have been run together to create an entirely new statement, with an extra word being added in the process.

The current image looks like it could easily qualify as deliberate and calculated defamation. And because it could be harmful to the profession of doctors to make such false statements about them, if it ever went to court the automatic assumption would be that defamation had occurred, and it would be entirely on the person making the false statements to prove that the statements are accurate.

Seriously, don't go there.

 

[caledonia]

Back to the original subject.

If you actually watch the video and transcribe it yourself, the translation provided on the website is not exactly accurate either, but it's good enough for the purposes of this discussion. There are no garbled sounds in this part of the video. It's all clearly understood.

First Komaroff brings up the subject of illness behavior. This is totally inappropriate. You would never see this sort of thing being discussed for cancer, HIV or multiple sclerosis. Only for diseases they think are at least partially psychosomatic - like CFS, GWI or FM.

Then Lapp agrees that illness behavior is a thing, although it's not a major concern. The pull quote did leave off the back pedaling statement Lapp did at the end, making it sound more drastic than what he actually said.

However, the backpedaling statement doesn't mean that he doesn't think illness behavior is nonexistent. He says it's not a major concern, therefore it must be a minor concern. Therefore it exists at least to a certain extent.

Again this is totally inappropriate. You would never hear a doctor educating other doctors saying, "some of those people with cancer/HIV/MS act sicker than they are so they can get on disability". This makes it sound like a) the disease is not that serious, and b) patients are malingering to get on disability so they can have a free ride.

This is what is being taught to our doctors, and this is why we can't get good treatment.

 

[caledonia]

I don't see how posting wrong information about Dr Lapp helps matters. Some items on that list are ridiculous - criticising the fact that he uses the name "chronic fatigue syndrome", objecting to his choice of picture of a tired woman. There are much bigger fish to fry at the moment without trumping up a list of minor objections to a short presentation by Dr Lapp.

This presentation was presumably CDC's rollout of the IOM report. The IOM report states that "chronic fatigue syndrome" is a terrible name and needs to go away. Lapp is still using that name. As SEID has gone over like a lead balloon, the government has compromised for now to use ME/CFS. Lapp is not even doing that.

The picture of the tired woman reinforces the stereotype that this is a yuppie white woman's disease and people who have it are just a little more tired than other people. This is similar to pictures that objectify women as sex objects or pictures that reinforce racial or ethnic stereotypes.

Imagine if he had used a photo of someone like Whitney Dafoe - a strapping young male reduced to an emaciated skeleton near death. How much more powerful would that be?

These might seem like a list of minor things, but in totality, they add up to institutionally reinforced stereotypes and discrimination that hold us back just as powerfully as gender and racial stereotypes have held back women and African Americans.

And remember, these are being taught to our doctors by the highest medical authority in the land, the CDC.

It's sad to me that these stereotypes and misinformation are so ingrained that even patients don't recognize them.

 

[TiredSam]

And remember, these are being taught to our doctors by the highest medical authority in the land, the CDC.

I quite agree that this is a legitimate and important concern. It was the style of advocacy that bothered me.

 

[Undisclosed]

Back to the original subject.

If you actually watch the video and transcribe it yourself, the translation provided on the website is not exactly accurate either, but it's good enough for the purposes of this discussion. There are no garbled sounds in this part of the video. It's all clearly understood.

First Komaroff brings up the subject of illness behavior. This is totally inappropriate. You would never see this sort of thing being discussed for cancer, HIV or multiple sclerosis. Only for diseases they think are at least partially psychosomatic - like CFS, GWI or FM.

Then Lapp agrees that illness behavior is a thing, although it's not a major concern. The pull quote did leave off the back pedaling statement Lapp did at the end, making it sound more drastic than what he actually said.

However, the backpedaling statement doesn't mean that he doesn't think illness behavior is nonexistent. He says it's not a major concern, therefore it must be a minor concern. Therefore it exists at least to a certain extent.

Again this is totally inappropriate. You would never hear a doctor educating other doctors saying, "some of those people with cancer/HIV/MS act sicker than they are so they can get on disability". This makes it sound like a) the disease is not that serious, and b) patients are malingering to get on disability so they can have a free ride.

This is what is being taught to our doctors, and this is why we can't get good treatment.

Then make the point that it is inappropriate using screenshots that are accurate. You can still make all these points with a screenshot that is 100 percent accurate. Right now the screenshot is not accurate and that opens the door to complaints about your organization.

 

[Snowdrop]

Every thing I say here is inference and my opinion.

I thought of the statement about disease behaviour as a minor concern as this: In the past medics/psychics have made a big deal of this.
So approaching the subject to make a statement on it for clarity and as a position seems reasonable enough.

Also, they do come at it from a different perspective. Unless they have personal experience of moderate/severe ME for themselves or family member they take a solely Dr's attitude toward ME while we have the patients perspective and experience. We know exactly what this is about for us.

For them if they are clinicians they will have, in their time, seen all kinds of patients including potentially people who do have life issues around disease behaviour--how to separate these things out--it may be that this is how the comment is framed.

I'm not giving it legitimacy, Im just saying that you can't expect perfection of thought and understanding 100% of the time.
Are there many things they should know better--don't even get me started. But like or not the move toward a very accurate and clear understanding from a second party perspective will continue to evolve. We can correct for sure but I wouldn't presume everything is always bad faith. And I am ready to consider that as a possibility at times too.

I don't have any insight (obviously) into Dr Lapp's rather muddled (IMO) view point--but I think it would be worth engaging him on it.

 

[jadam914]

After watching the hour long Grand Rounds video I have to say your assessment is quite lacking. Maybe you should watch the video a few times. The language they used was quite clear that it is a biological illness and the CDC seems especially concerned with helping us. I was a little concerned with Nathan(NIH) endorsing Walitt and a small part of the language he used but those are the only things I was really bothered by.

Video link of Grand Rounds:

YOU may want to get your facts straight before trying to inflame people with this POORLY written and researched blog post from Tracy Temple Smith. I now have NO respect for " ME Advocacy" after seeing this ILL REPREHENSIBLE TRASH from them.

I may be fairly new to this disease but from what I have learned of our history this may be the most positive movement we have seen from them ever. We have every right to be skeptical but let's not bite the hand that feeds us.

Edit and update:
I must make a correction as the proper information was not available when I commented on the article. Apparently, after reading very minor changes that were made to the article, I would like to state that Tracy Temple Smith may not be solely responsible for this article. I am told the article was written by an advisory group which speaks to something far more systemic in my opinion.

 

[caledonia]

Then make the point that it is inappropriate using screenshots that are accurate. You can still make all these points with a screenshot that is 100 percent accurate. Right now the screenshot is not accurate and that opens the door to complaints about your organization.

The quote in the red box is what's known as a "pull quote". This is a standard journalistic practice often seen in magazines and newspapers. It's a graphic meant to draw the reader into the article. Pull quotes are necessarily short and only include a portion of the entire quote. This is different than a screenshot.

https://en.wikipedia.org/wiki/Pull_quote

It's customary to provide the rest of the quote in the text of the article, but in this case, as the source was a video, a link to the source of the quote was provided so that it could easily be checked out.

The blog has been edited to provide the full quote in text form as is customary.

Thanks for everyone's input in making this a stronger article. Sorry for any confusion.