Trial By Error: The CDC’s Pathetic Response to Reuters

http://www.virology.ws/2019/03/25/trial-by-error-the-cdcs-pathetic-response-to-reuters/

 

Do they still have ties to MS?

"Having published the first UK research diagnostic criteria for CFS (the ‘Oxford
definition’) in 1991, Sharpe was a co-author on the International (CDC) criteria, which were based
on the Oxford definition, and have since been adopted worldwide (Fukuda et al., 1994)."

taken from the Oxford Impact report.

 

Yes. Yes. Yes.

 

well, but Reuters did get a quote specifically for the article: The head of the CDC’s chronic viral diseases branch, Elizabeth Unger, told Reuters this was done to remove jargon and medical terms that are not widely understood by the public. “We received feedback that the terms were confusing and too frequently misinterpreted,” she said in an email response to questions.

This is a cop-out answer. They also received feedback that the therapies were based on terrible science. When they wrote CBT and GET, they meant CBT and GET. Everyone knew they meant CBT and GET. They changed it because they recognized finally that the science was not viable. It is disingenuous and antithetical to the public health mission to claim that they removed it because people found it confusing.

 

Maybe to the CDC, CBT and GET always meant something else entirely.

"When I use a word," Humpty Dumpty said, in rather a scornful tone, "it means just what I choose it to mean—neither more nor less."

"The question is," said Alice, "whether you can make words mean so many different things."

"The question is," said Humpty Dumpty, "which is to be master—that's all."

 

I would be inclined to agree with you. However, I sent a request for clarification 10 days ago and have not received any response. She may be on vacation or out for some other reason.

I sent another email today.

I mean, definitely. Friedberg wrote an entire screed on how the UK BPS practitioners' use of CBT had ruined it for ME forever. We've discussed here that CBT was originally conceptualized as a therapy to help people adjust to a life of chronic illness rather than to convince the patient they didn't have one. When my sister was receiving cancer treatment, she told me they had also recommended CBT, and the next thing out of her mouth was, but not like that. CBT for ME is different from that which is offered for other conditions.

GET is less ambiguous. To 'grade' something is to increase it, by definition... and Wikipedia defines it as "physical activity that starts very slowly and gradually increases over time" and in the very next phrase states that this is how it's contextualized for CFS!

But no one can say that they meant CBT and GET in whatever sense is most acceptable to whichever group is being addressed at the time. GET has become associated with pushing through, being active regardless of symptoms. CBT has been associated with forcing the patient to agree they're not sick at all, that illness is something they are "doing" to themselves. That's what CBT and GET mean for pwME, now. We can't say "I prefer other definitions". The meanings have changed.

 

Precisely what I asked for in my first email. Then I added that more context would also be fine.

The idea that the CDC removed these treatments because there was some "confusion" around them implies, whether Unger meant it this way or not, that the confusion is on the part of patients. That would mean that the only reason people with ME object to these treatments is because we don't understand them.

I have personally read two handbooks for CBT in pwME. I fully understand what it entails.

I wonder if others have done the same, or if they simply presume that CBT for ME is the same as CBT for anything else.

 

I'm probably missing behind the scenes info, but reading the blog without that I was left wondering if, politically, it would have been better to reach out to those at the CDC about concerns with the way Kelland has represented the changed recommendations before writing a blog describing their behaviour as pathetic? Presumably the CDC will have some concerns about the way they are being presented as abandoning good science and effective treatments due to unreasonable pressure from activists - it would be good to try to work with them on correcting the record here even if they want to do so in a face-saving manner for themselves.

The CDC will have insiders encouraging them to dismiss our concerns as just rude and obnoxious 'activists' interfering in science and I don't think that we can be confident that this will not become the dominant narrative. I suspect that a lot depends on what Cochrane do and I expect Cochrane to want to play down problems with its own work too. I can see a plausible path for these institutions to save themselves problems in a way that will harm patients, and I think that they'd get away with it. At this point, a headline about the CDC's pathetic behaviour might not be the most useful approach.

Also, I worry that talking about the underlying models, or the cardinal symptoms, is a distraction that makes it easier to present concerns about CBT/GET as ideologically driven. It's not like the IoM conclusions were founded on such clear-cut evidence that it overwhelms all other views about how ME/CFS should be approached and understood. It is part of the story, and somewhat relevant to concerns about recommending GET in the absence of strong evidence of efficacy and safety, but I think that this is a relatively minor part of the story and an argument that can easily end up putting off more people influential people than it persuades. Within medicine there seems to be much more of an acceptance of a form of pragmatism that can be troubling to the general population, and it is people within medicine that we need to be persuading.

The model underlying a proposed treatment can be wrong, but the treatment still useful. It seems like lots of drugs end up helping treat conditions in ways that were not expected, but were just discovered through experimentation. And our understanding of an illness can make a proposed intervention seem likely to be dangerous until trial data provides an indication that it is of benefit, eg for peanut allergy, a bad reaction to peanuts is the cardinal symptom, but there's now some evidence that very gradually introducing peanut proteins can be beneficial for patients. To me, it seems that the discussion of models is rarely useful in attempts to raise concern about CBT/GET.

 

Considering the response at the time from medical professionals, I'm thinking maybe there was too much internal pressure to do any better.

It's a small sample but the CDC update was posted in the medicine forums on Reddit and the reaction was so nasty, you'd swear they just found us standing over the mutilated corpse of their childhood pet, blood dripping from our jaws. There were howls about how patients were destroying good science and should never be involved in any capacity that can affect outcome and guidelines.

Responses were basically some mix of "exercise IS the treatment not matter what this says and those lazy malingerers will take it and ask for seconds". Not sure why but it's irrationally emotional I can barely imagine how strong the opinions are within the upper circles of the CDC and NIH who should technically be held accountable for having signed off on obvious pseudoscience.

Those recommendations came about from relentless self-promotion by the usual suspects and it's hard to measure exactly how much they privately managed to influence those involved in decision-making capacity at those institutions. I'm definitely picturing many nasty laughs and derisive emails sent around.

 

yes I think you are missing things going on behind the scenes. People are reaching out and have been reaching out to Dr Unger for years on these issues. That is continuing. There is a good-cop/bad-cop dynamic in some of this. There is no point in me reaching out to the CDC because I only get official statements back. But my criticism does not prevent them from making a clear statement about PACE and why they dropped the recommendations. I also don't see how criticizing the underlying model behind the treatments would turn off possible allies. Why not criticize a model that presumes you have dysfunctional cognitions about your illness?

 

And why not criticise a model that includes statements such as :

Furthermore there is some evidence to support the suggestion that patients who attribute incapacity and failure to physical disease rather than to their own shortcomings are able to maintain a more positive self view.

Sharpe quoting Powell et al 1990 in Science and Practice of Cognitive Behaviour Therapy eds Clark and Fairburn. All one can say is that our gain is cancer patients' loss.

 

Maybe its time for clinicians to drop CDC because they have misinterpreted what they mean.

 

Oh sure - I didn't think otherwise. I guess I feel like now might not be the best time for you to be playing bad cop. I can be unusually cautious, but I feel like your work, and your role drawing attention to problems surrounding PACE, are important enough that it's particularly worth avoiding risks that others can take.

It seems to keep feeding into the notion that criticism of work like PACE is motivated by an ideological opposition to psychosocial models of the illness rather than a genuine concern with the quality of the research.

I think that's why Kelland made it seem like that was your primary concern:

That emphasis helps put off some independent figures, and the people who see an innate problem with that sort of approach to CFS are likely to be concerned by other issues with PACE/CBT/GET anyway, so do not need to be persuaded of problems with the underlying model. It seems like the sort of issue that might be appealing to those we don't need to appeal to but risks putting off some of those we do.

 

Fortune favours the bold

 

What my Dad would have called flimflam.

 

While I appreciate we need to be careful about what we say, I'm not sure what difference it would make. For decades we have been misquoted, had things taken out of context, had our words twisted, been accused of saying things we never said, had language carefully chosen to imply things that are then denied, denigrated, patronised, gaslighted and lied about.

The fact that David Tuller did not have his university position mentioned and the language used to describe him shows that even a very careful choice of language would not have made any difference.

The CDC have done for the US what the BPSers have done for the UK, most likely because they have been hand in hand. If they are to have any credibility with us they need to prove that things have changed from the days of Stephen Strauss' nastiness and misogyny.

 

The incompetence and cowardice by the CDC regarding them ''dropping'' CBT / GET was used in the Danish ME/CFS debate against patients. I definitely agree with a more aggressive stance being taken in this particular case.

 

She was, in fact, out for another reason: she was at that clinicians' summit.

So I did receive a reply... I've got to work through what was actually said and come back to her. But I wanted to let you guys know.