Link to full article to BMJ's Best Practice for ME

[Countrygirl]

https://drive.google.com/file/d/0B57eLIp17Q8MNEtlV2RnSG54N28/view


I am placing this in a new thread to alert people who have been reading the one dedicated to the summary of best practice here:

http://forums.phoenixrising.me/inde...st-practice-summary-for-me.55758/#post-929231

The new link is the full document

 

[NelliePledge]

Thanks.

It is quite a mixed bag some good stuff about PEM and where it highlights research finding and issues with criteria. But page 53 under recommendations - patients should be instructed about de conditioning and about using "low intensity" exercise like walking, swimming (etc) doesn't say as in NICE anything about use of heart rate monitoring. Taken on its own - and presumably some GPs will jump to this page without reviewing the whole thing - unhelpful and potentially dangerous. I know they can't go against NICE as such but at least needs to mention HRM and link/ refer to PEM explicitly here.

 

[A.B.]

I like it but the treatment part is clearly still heavily influenced by BPS views: contradictory advice on exertion, a soft recommendation for GET, lots of emphasis on antidepressants.

 

[MEMum]

I like a lot of it.
I agree with above comments.
In addition there appears to be minimal understanding of why people with ME have had strong difference in opinions with the "medical specialists". There is no mention of the CBT that was recommended as per PACE was to change patients false illness beliefs and GET to combat their fear of exercise! (p37)
Has anyone got any idea how we can respond to these errors/omissions?

If this Best Practice document was last updated 31 July 2017, did NICE not know that it was being worked on when they were prevaricating about review of their guidelines?
Presumably the doctors in CMRC will get this update...

 

[MEMum]

In addition they still keep referring to rehab!
Does anyone know what "body awareness therapy" is? p40

 

[sue la-la]

i'm perplexed by "Pathophysiology" on page 6 - which includes an extended discussion of theoretical "Excessive or burned out stress responses" and "Rape-induced paralysis or immobility when under fire in battle".

since when did random speculation have a place in an evidence-based clinical guideline ?

 

[Learner1]

Much of this was very good. However, the diagnostic testing and treatment sections were disappointing.

Though it discussed the metabolomic studies, amino acid depletion, and IBS, there was no mention of testing for nutrient deficiencies beyond ferritin and no mention of stool tests, and certainly nothing about treating any problems found (pre and probiotics, B12, folate, glutathione, lipid replenishment, CoQ10, electrolytes, etc.)

Though it mentioned viral infections and hypogammaglobulinemia in several places, it didn't recommend adequate testing. And it downplayed the effects of antivirals and immunoglobulin treatment.

Though it mentioned MCAS, it didn't provide guidance in how to manage it.

Certainly, when exercise and cognitive therapy are still covered in so much detail, some due diligence to these topics, and the inclusion of immunologists, infectious disease specialists, nutritionists, etc. should be attended to.