Three Approaches to CFS in the UK, Australia, and Canada: Lessons for Democratic Policy

[Snow Leopard]

There is no leadership here.

Exactly!

It's just pass the parcel with no medical authorities taking responsibility for the constant failure.

 

[Kati]

Exactly!

It's just pass the parcel with no medical authorities taking responsibility for the constant failure.

Well, mind you, i will take no leadership over bad or wrong leadership.

 

[*GG*]

Exactly!

It's just pass the parcel with no medical authorities taking responsibility for the constant failure.

Isn't Democracy grand

GG

 

[taniaaust1]

the working group for the Australian CFS CPGs found dialogue highly problematic as they attempted to juggle two opposing models.

and that lead to different states of Australia being different and their ME/CFS societies I believe agreeing to different things

eg here in Sth Austalia our SA ME/CFS society way back decided to also endorse and advocate the Canadian Consensus Criteria.. which then a link to this was always on their website first page (and we could also buy the booklet for the CCC guidelines at the society for a gold coin donation if they didnt give it out free and then we could use this to take to our drs). Where as some other states seemed to solely just accepted the Australian Guidelines and I dont believe kept pushing the CCC (or werent pushing it in the way it was in SA).

We went to both the CCC and the 2004 ME/CFS guideline being recognised in SA.... our general doctors though seemed to still have no knowlege of either!! and just like Canada, ME/CFS patients got let and still often are without any treatment at all. No GET or CBT recommendations, no symptom treament, often just NOTHING).

It was like till recently "we can do nothing for you as you have CFS, why are you coming to me" I actually did have many doctors say this to me as the dr often near shoves you out the door.

I dont know if guidelines endorsed by our gov here in Sth Australia ended up being different at all to the Australian guidelines due to our stance not to leave the CCC behind http://sacfs.asn.au/download/guidelines.pdf page 5 of that you can see we use the canadian here for diagnoses under our Sth Australian guidelines.

 

[alex3619]

Criticisms of Evidence-based Medicine

The problem-solving model clearly has limitations particularly in areas where the types of evidence privileged in an EBM approach do not map well onto the existing evidence base. Elliott and Popay ( 2000 ) summarize key criticisms of EBM as they apply to its use within policymaking processes: it is “too closely identified with randomized control trials, marginalizing research using other designs” (462). Even more importantly, EBM does not address how to weigh or integrate the types of value judgments which are required when writing policy, nor are there standardized methodologies for how to integrate evidence based on research, clinical practice, and patient experiences. Finally, EBM alone does not provide guidance on how make evidence transferable to practice, or in this case to CPGs.

EBM is a management decision tool, not scientific, though it can use some scientific methods.

This basic criticism is what I raised about the IOM review. For EBM to have some reliability there has to be a large, well funded and otherwise adequate research effort. In situations where there is any distortion or bias or lack of interest, such methodologies increase the risk of bias in my view, they do not decrease it. EBM is a tool to indicate, not prove, that some treatment options are better than others. When you look at EBM for other than clinical trials its very hard to even find guidelines.

One thing I really dislike is confusion over first rank evidence and gold standard clinical trials. RCTs are NOT gold class studies. They are NOT first rank evidence. They can be high ranking evidence if they fulfill a whole bunch of caveats. Like having placebo controls, and a high effect size, and being double blinded.

Its all about reducing bias, and in many cases EBM increases bias, due to methodological failings.

Many do not know that for clinical trials, in many cases case controlled series are the highest form of evidence as well. Its about things like sample size and methodology and effect size.

Many seem unaware that sometimes an RCT is absurd, so rejecting evidence because its not from an RCT is equally absurd. Basic research falls into this category. Research on the mechanism of a specific biochemical marker, for example, is not applicable to RCT methodology.

Since ME and CFS have underfunded and rather narrow research efforts for the most part, with some severe distortions (including funding distortions) the reliability of any EBM investigation into ME or CFS is in question. In another five, ten or twenty years this might change. What wont change is the reliability of current methods, and the inherent methodological distortions. Its not enough to rubber stamp studies as good or poor quality before doing in-depth investigation. Its not enough to accept the methodology used, or to rubber stamp it, or to ignore issues because there is not enough funding, time or resources to look into poor methodology. Similar issues occur with ignoring good methodology in studies that do not otherwise meet cookie cutter standards of excellence.