CBT in the treatment of CFS: A narrative review on efficacy and informed consent

[taniaaust1]

I can't access this paper but have a general CBT evidence query.
Are all CBT trials as weak as PACE. I don't mean all the technical issues with PACE, I mean the lack of blinding, subjective outcomes and no proper control?

Im yet to see a good CBT study. I dont think there has been any, they all have huge faults and were done by those who were biased to start with and out to prove CBT helps.

 

[taniaaust1]

Yes, the quality of ME and CFS research is abysmal, with relatively few exceptions. I wonder if IACFSME or some other good organisation could maintain a database of published papers where it classifies the study, grades it on quality and notes some key things such as has the study been replicated? what criteria did it use for participant selection?

Would that be too big a job to fund? Once there is a system and a coordinator/final arbiter, much of the work could probably done by volunteers.

The database and updates would be a useful resource for researchers and government health institutions. Grading could create a powerful way to encourage improvements.

That is what we really could do with, a database of the studies with them ratio on how well done the studies were. I'd love to see all our studies given a rating out of 5. This wouldnt just help us but also help others who are researching this illness.

Just like 23andME had at their website, all their studies they used for supporting evidence were rated so people knew how much to consider a study result. We seriously need the same thing done to all our ME/CFS studies with maybe something we could click to say more about why they got the rating given. It would be awecome if someone set up a website just to put all our studies in and the ratings and comments on them which medical professions and others could use

A project for the ME community? Maybe we could fundraise and pay someone to set something like this up?

 

[alex3619]

I'd love to see all our studies given a rating out of 5.

This is essentially the evidence based medicine approach. Most of our studies do not do that well. A minority do very well. Using strict measures the CBT studies would do very badly, but the Cochrane reviews of PACE were not independent reviews. The authors of the PACE trial had a lot to do with both reviews, and not just supplying data.

There is also the issue that standards for clinical trials, and therefore any ratings, are different for investigative studies, or for diagnostic studies, etc. I have been unable to find clear criteria for anything other than clinical trials.

One final point, I think anyone claiming RCTs are the gold standard of medicine do not grasp the fundamentals of evidence based medicine. You have to add a lot of caveats to turn RCTs into a high standard, and many RCTs simply fail to achieve that. On a related matter, many controlled case series offer better evidence than many RCTs.

 

[medfeb]

This is essentially the evidence based medicine approach. Most of our studies do not do that well. A minority do very well. Using strict measures the CBT studies would do very badly, but the Cochrane reviews of PACE were not independent reviews. The authors of the PACE trial had a lot to do with both reviews, and not just supplying data.

Inexplicably, the US AHRQ evidence review determined that PACE was a good study with little reporting bias. The only thing I can imagine is that their criteria were fairly superficial features and they didn't bother to dig/dismissed pesty information that disagreed with their criteria

 

[alex3619]

The only thing I can imagine is that their criteria were fairly superficial features and they didn't bother to dig/dismissed pesty information that disagreed with their criteria

One of the issues is that they use checklists, and presume nothing major is wrong with the study. Detailed analysis does not occur. Typically a participant in a review has to review thousands of studies in less than a year. That is on the order of three a day, with only a part time effort to do it. Tickbox criteria miss soooo much, especially with such little time. On the other hand many of us, trained in academia, science, math etc., spent hundreds of hours reviewing just a few studies, as in each of us. EBM is a guide, but not nearly infallible. In fact its revealed to be very fallible and capable of being rorted - PACE reveals this.

I am not in favour of EBM for this reason. What I am in favour of is EBP, or evidence based practice. The difference is that doctors are given the skills to evaluate papers themselves, and if something is important they can do the in depth analysis they are not usually trained to do.

The two are complementary however. If doctors have the skill, and more reviewers have the skills, then EBM would not be so easily used as a railroad for bad science. Further if the current impetus for evidence based Management of medicine were not distorting EBM even further, things would be heading on a better path for medicine and the community.

There needs to be a clear separation of scientific EBM and managerial EBM. They clash.

 

[medfeb]

Great points, @alex3619

 

[Barry53]

I can't access this paper but have a general CBT evidence query.
Are all CBT trials as weak as PACE. I don't mean all the technical issues with PACE, I mean the lack of blinding, subjective outcomes and no proper control?
At what point does evidence get classified as weak over no evidence?
If a trial is fundamentally flawed to begin with can any conclusion be drawn , why would some evidence be classified as weak as opposed to not meeting required basic standards of clinical trial evidence?
Tks for any feedback.

No answer, just an opinion . As a relative newcomer to all this, but long enough in the tooth to have seen much of human nature, it seems to me to have little to do with what is right, and everything to do with who the players are and how much power they wield.

 

[RogerBlack]

http://freakonomics.com/podcast/bad-medicine-part-1-story-98-6/ - this is the first of three podcasts into the problems with medicine.

It came up with a term that is new (to me) that I like.
Eminence based medicine.
It is right because I say it is right, and I am a very important doctor who made a great discovery 20 years ago.

Also covers the various issues with trials.
For example, trials into drugs to treat severe depression excluding people who drink, when most people with severe depression drink.