Norwegian guidelines in development: help with a literature search

Oh you need to highlight that subjective outcome indicators are unreliable - Google something like "measuring activity levels Actimetry versus self reported outcomes" - also check out the PACE results-
"According to these results − 354 m after CBT – patients would still be ill enough to be put on the waiting list for a lung transplant (⩽ 400 m) (Vink, 2016). No one in the trial achieved actual recovery, where symptoms are eliminated and patients return to pre-morbid levels of functioning (Kennedy, 2002), which is the general public’s understanding of the meaning of recovery (Vink, 2017a). "
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498783/

 

Why bundle other kinds of "chronic fatigue" into the guidance for ME? Why not into MS or some other condition? Rhetorical...
I worry that bundling "chronic fatigue" into the guidance for ME could at best confuses doctors by conflating ME as chronic fatigue and could harm pwME with inappropriate recs

UpToDate, used by US doctors, has separate guidance for ME as does NICE. Any chance of getting them to develop separate guidance for ME based just on the evidence that actually assessed ME cohorts?

 

So this is (Norwegian) guidance on fatigue i.e. rather than ME/CFS?
@Medfeb
@Lena Kjempengren might be a good idea to check the outcomes from the Aberdeen University study on fatigue - (again?) this relates to fatigue generally?
https://www.abdn.ac.uk/news/16714/#:~:text=Innovative research using AI led,simply because of modern lifestyle.

 

@Lena Kjempengren it occurs to me that this* could be a useful way to rebut CBT i.e. if the outcome is this poor then how could it be justified to fund it using public money/tax?
Also, check out the thread on this site re this** "ME Association is funding a study led by Prof Sarah Tyson of University of Manchester (who also has ME) to develop a clinical assessment toolkit in collaboration with people with ME (PwME)". I recall that Tyson had some phrase about a "meaningful" indicator - actually it's subjective & misleading! Jonathan's highlighted [thread on this site] that arthritis has a combined indicator (subjective & objective components) so perhaps get that reference and weave it into your response?

*"According to these results − 354 m after CBT – patients would still be ill enough to be put on the waiting list for a lung transplant (⩽ 400 m) (Vink, 2016). No one in the trial achieved actual recovery, where symptoms are eliminated and patients return to pre-morbid levels of functioning (Kennedy, 2002), which is the general public’s understanding of the meaning of recovery (Vink, 2017a). "
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498783/
https://www.s4me.info/threads/norwe...-a-literature-search.38929/page-2#post-538508

**https://meassociation.org.uk/research-clinical-assessment-toolkit/

 

@Lena Kjempengren you could highlight the rituximab trial methodology (all clinical trials are registered). Specifically highlight that the trial used actimetry (Fitbit type devices) to measure activity levels pre&post intervention (rituximab). That trial is roughly 10 years old - so if Norwegian researchers could do this 10 years ago then why can't the psychological folks do that 10 years later +++ technology has improved, cost is lower ---
The psychological folks have used the argument that they aren't real scientists like medical doctors --- should be subject to a lower threshold/burden of proof. Actually folks on this site (like Graham & Jonathan) have highlighted that these psychological "treatments" can cause harm -- sure someone here could give you a link to Grahams (published) research.

 

@Lena Kjempengren re the harms that the psychological approach can bring this quote (from a nurse) comes to mind- "The bastards don't want to get better"...*
Could you imagine the outcry if cancer patients were sent to CBT --- penalty is to stop their social security benefits --- and the take home message was "if you want to get better then you will"!
Professor (Psychology) Brian Hughes has published on this & he's on this forum/website.

*https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132

 

America has some good guidance written 2023 by clinicians with experience with m.e , that is not so much relying on 100% gold standard evidence because we don’t have that for m.e because there hasn’t been the research or funding but they do have small studies, clinical experience and anecdotal reports, which have to have some weight given the only alternative is to tell Very sick patientS to go away with nothing At all but pacing , ADS & pain relief. https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext in the UK we have a state funded health service which puts extra limits on what could be recommended et cetera and is why we have essentially nothing recommended over here in our the NICE guidelines, but that doesn’t mean the other countries with a more open health service can’t use a more different way of devising best practice.

 

@Lena Kjempengren , re potential harms, @Tom Kindlon has published on this.