CDC Posts NEW CONTENT on ME/CFS (July 12, 2018)

I have a concern that if one pushes for only statements that have good evidence, a lot of the good stuff will also go. And even the evidence from 2-day exercise studies doesn’t appear to neatly replicate: each study tends to find an abnormality but often they are different.

As I suggested before, I think the problem about the promotion about exercise is at partly and probably mainly to do with the sympathetic and knowledgeable physicians that the CDC rely on (probably some of Klimas, Bateman, Komaroff, Lapp, Levine, Natelson) who recommend exercise. The CDC are unlikely to not mention exercise when so many of them do on top of the evidence from GET trials.

 

I forgot who here was that can write / publish papers, but can we like detail the workwell foundation study and recommend as test for CFS/ME??? I think we need replication or more literature so other sites will accept this as acceptable testing. So we can move forward and have at least this we can do to test.

By the way I called my university for testing and the psycology department runs the testing and had some CBT crap there, suffice to say I run away.

 

Ugh.

 

https://twitter.com/user/status/1019704181358198784


https://twitter.com/user/status/1019705092356890624

 

That's well overdue.

Did you find something that said that? Or is it that Reeves is not listed on their definitions page? I suspect its not listed there because CDC has said its not a different definition from Fukuda, just different operationalization. They are still defending that it selects the same patients and defending studies that used it. If I remember correctly, a Reeves Fukuda study was published in the last year or two

 

Another thing I noticed: the other dx criteria are listed as 'historical'. It's an interesting attempt at linearizing a really web-shaped reality. I'd still say the most preferred criteria by patients are CCC (if they've compared CCC and ICC; if not, ppl tend to say the newer one). These aren't 'historical' criteria, they're still very much in use by patients and clinicians, and by researchers, too.

 

Major healthcare providers often won't touch treatments for which there isn't strong evidence or large kickbacks/rewards for using.

 

They have all found issues at the ventilatory threshold at day 2 - it is the VO2peak that varies from study to study, I suspect it is because not all participants are reaching a true VO2Max.

 

But was there a consistent finding with a particular measure at the ventilatory threshold? My impression was there wasn't. If so, which measure?

 

Here is my quick summary of all the data I have seen so far:

van Ness 2008
Difference in Ventilatiory threshold Oxygen Consumption (VTO2)
Reduction of workload at ventilatory threshold not reported

Vermulen 2010
Reduction of workload at ventilatory threshold (difference between patients and controls on 2nd day only)
Difference in VTO2 (difference between patients and controls on 2nd day only)

Snell 2013
Reduction of workload at ventilatory threshold
Difference in VTO2

Keller 2014
Reduction of workload at ventilatory threshold
Difference in VTO2

Giloteaux 2016
Reduction of workload at ventilatory threshold (notable trend as it was a twin study)
Difference in VTO2 (notable trend as it was a twin study)

Hodges 2018
Reduction of workload at ventilatory threshold
VTO2 (no difference)

Nelson (seminar presentation 2017, hopefully to be published this year)
Reduction of workload at ventilatory threshold


Many of these studies have been quite underpowered, but they have surprisingly all shown the same trend - reduction of workload at ventilatory threshold.

 

I haven't been following this thread, but wondered if the topic was what Jen Brea was tweeting about yesterday:

https://twitter.com/user/status/1020761648221470720


https://twitter.com/user/status/1020761848658812928


https://twitter.com/user/status/1020762288637145088


https://twitter.com/user/status/1020762465171210240

 

Should be out soonish though.

 

Fair play to Jennifer...that sums it up really 'a contradictory mess'.... whatever good bits are in at are spoiled by returning to the increase in exercise. We would love to increase our exercise and might do so some day if we are given appropriate medical treatments. I keep trying to convince myself the update is a good thing and it is to some degree but it's like they bring us in from the cold to a nice cosey kitchen but then turf us back out again into a damp miserable shed.

 

Thanks to everyone looking carefully at this. I still haven't taken to time to do so.

It sounds like this is an improvement on what came before, but that it's still worth requesting improvements/clarifications.

 

The major problems I see are the recommendation for increased (aerobic) exercise, the lack of specific treatment recommendations (besides exercise), the requirement for individualized chronic care (very expensive and without strong evidence it will lead to better outcomes), and putting primary care doctors at the center of developing and implementing a treatment plan (no training, most don't have the time to manage and continously update treatments for complex fluctuating chronic patients).

 

It is however, to my reading, better than what preceded it.

Not perfect, it's even bad/dangerous in places, but better.

This is the perspective of someone from the UK, other countries/people may differ in their opinions - as is only right.

(It reads like it was developed by several different people, who each had different briefs)

 

I believe it was written by two people who have different views about the illness, but it could have done with some input from patients. As it is, it's a sloppy compromise at best, and openly contradictory at worst.

 

A lot of what is being quoted was not revised at the same time, and therefore probably not by the same person. Check the update timestamps at the bottoms of the pages.

 

They definitely sought patient and stakeholder advice, and continue to do so. They don't always follow that advice, however.

 

I've probably missed it because I've been swamped with NICE stuff, but do they do drafts that stakeholders can respond to in a similar way? Or is it more of a closed shop?