IiME: NICE – A Poverty of Reason (Update)

[Ember]

Excerpt:

In December 2012 the NICE Board agreed that a new programme for reviewing clinical guidelines should be developed.

As part of that proposal NICE decided to create a list of candidates to put on a static list to ensure sustainability and efficiency of the programme...

IiME Comments

NICE failed to conform to the AGREE Instrument which requires that NICE is obliged to give equal weight to three main sources of data: “evidence-based” medicine, usually deemed to be random controlled trials (RCTs); the opinion and experience of physicians with expertise in the area, and the opinion and experience of the patient group for whom the Guideline is intended....

We again urge NICE to initiate a complete review of guidelines for ME....

Although we doubt whether NICE will change its attitude (NICE has shown scant regard in the past to the concerns of ME patients and their families) we have nevertheless used the opportunity to draw attention to the following points -

• IiME concluded that the basis of the NICE Guidelines was in viewing as broad a section of fatigue states as possible, where high quality biomedical research into ME was ignored. Essential research showing the multi-system nature of ME was not considered or discussed.
  The original guidelines were unfit.

• The prevalence figures used by NICE are at odds with recently announced prevalence figures used by the MRC collaborative and recently NIHR-funded research - with a difference of over 100%. This means we have an epidemic of ME or the NICE figures are completely wrong, or the MRC collaborative figures are completely wrong

• NICE exhibited a bias toward promoting a predetermined one-size fits all approach to ME by continually highlighting CBT and GET therapies despite widespread derision from ME patients.

• New research underway and planned to be completed in the next three years invalidates NICE's statement that no new research is expected to change their decision [7]

• To leave the current outdated and unusable NICE guidelines for ME for another 5 years with no updates reflecting the current poor education regarding ME and without any knowledge of the biomedical research performed/about to be performed, would effectively mean that no clinical guidelines for ME will have been reviewed for 12 years. That is unacceptable.

• The PACE Trial has demonstrably proven that CBT and GET (the primary treatment recommendations of the NICE guidelines) do not work.

IiME's response was sent in on 23rd October 2013 [2] using the required NICE pro-format....

February 2014 Update:
In February 2014 NICE published their responses. These can be viewed here

The responses to Invest in ME's comments are from page 95 onwards.

We find the NICE comments both meaningless, inaccurate but also pre-determined....

More...

 

[biophile]

Evidenced-based guidelines today, malpractice tomorrow

Karen S. Sibert, MD | Physician | February 21, 201

http://www.kevinmd.com/blog/2014/02/evidencedbased-guidelines-today-malpractice-tomorrow.html

"There are fads in medicine just as there are in fashion — today’s 'evidence-based guidelines' may be tomorrow’s malpractice. [...] The authors of the SCIP core measure cite scientific evidence to support their recommendations. Unfortunately, much of the science has been discredited."

Sound familiar? Reminds me of CBT/GET for ME/CFS, which is little more than a hyped fad and based on questionable superficial evidence which falls apart when its looked at too closely.

 

[alex3619]

Not just familiar @biophile, but endemic and expected.

 

[Snow Leopard]

This begs the question though.
So they don't expect the evidence base to change, the question is why? Because there is so little research into treatments and clinical outcomes. Doesn't this mean that we should in fact be expanding research funding in these areas since the outcomes right now are so poor?

It seems there is a big gap in the reasoning between different government departments.

They are literally planning to fail.

 

[alex3619]

Most of medicine is not "evidence based" as understood by the majority of those who practice EBM. EBM itself has fundamental flaws in its current practice, that those who promote Science Based Medicine are well aware of. If its not science-based, what kind of evidence is it? EBM at its worst is a managerial practice, run by the numbers with no proper investigation into the research it uses. It presumes, unjustly, that the research it uses is sound, and yet its precisely because we know it is not sound that EBM is promoted. Its medicine by numbers. There needs to be lots more research into this, but there are probably hundreds of thousands of things that need to be studied, with high powered studies ... where is the money coming from? The resources, including unbiased researchers? EBM may be the way of the future but that future is next century at least. This century it threatens to become an evidence based monstrosity.

 

[user9876]

This begs the question though.
So they don't expect the evidence base to change, the question is why? Because there is so little research into treatments and clinical outcomes. Doesn't this mean that we should in fact be expanding research funding in these areas since the outcomes right now are so poor?

It seems there is a big gap in the reasoning between different government departments.

They are literally planning to fail.

I wonder if it is an argument to go to the MRC and NHS research funding and say more funding is needed. And different funding that will lead to treatment.

 

[daisybell]

How ironic that the kevinmd.com website should have a 'learning opportunity' written the very next day stating that CBT and GET are the only effective treatments for CFS.....

 

[Valentijn]

How ironic that the kevinmd.com website should have a 'learning opportunity' written the very next day stating that CBT and GET are the only effective treatments for CFS.....

Ah, but all the suggestions from authorities about empowering patients, reading the actual frigging research, and the failures of EBM never apply to ME/CFS.

I think ME/CFS is just the current whipping boy of the medical world.

 

[biophile]