Checking our blind spots: current status of research evidence summaries in ME/CFS (2018) Davenport et al

mango

mango

Senior Member (Voting Rights)
Checking our blind spots: current status of research evidence summaries in ME/CFS

Todd E Davenport, Staci R Stevens, J Mark VanNess, Jared Stevens, Christopher R Snell

The evidence-based practice (EBP) model hierarchically organises scientific information by level, from lowly case studies to lofty systematic reviews and clinical trials. Clinical trials best influence recommendations because they putatively have the greatest internal validity.1 This assumption is based on sound research ethics, such as scientific competence and good faith actors, as well as observed differences in outcomes. An EBP blind spot emerges when fundamental assumptions are unmet. Based on findings of a 2018 PEDro evidence summary in BJSM 2 and elsewhere,3 it now seems clear that scientific research in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) resides in a blind spot.

ME/CFS—a multisystem condition
ME/CFS is estimated to affect 836 000 to 2.5 million people in the USA.4 Ninety per cent of cases are thought to go undiagnosed,4 suggesting that people with ME/CFS are substantially undercounted, underdiagnosed and undertreated. Substantial literature exists to support that ME/CFS is a multisystem condition that appears associated with a combination of genetic, cellular and systemic metabolic deficits in …

https://bjsm.bmj.com/content/early/2018/07/17/bjsports-2018-099553

Behind paywall
 
It's a one-pager. Some good lines:

Ninety per cent of cases are thought to go undiagnosed, suggesting that people with ME/CFS are substantially undercounted, underdiagnosed and undertreated.
Click to expand...

Mostly combating the idea of the Cohrane review being the final word, unless I miss my guess.

Despite the severe limitations of the UK PACE trial and its conceptual offspring, it continues to exert outsized influence.... Indeed, the UK PACE Trial has exposed some of the most important public health-related ethical and legal challenges of our time, which, as yet, remain largely under-reported and unknown to many clinicians
Click to expand...

A final call for evidence based medicine also involving patient perspective.

If quoting to this limited degree is unacceptable, lmk mods, and I will remove.
 
mango said:
Checking our blind spots: current status of research evidence summaries in ME/CFS

Todd E Davenport, Staci R Stevens, J Mark VanNess, Jared Stevens, Christopher R Snell

The evidence-based practice (EBP) model hierarchically organises scientific information by level, from lowly case studies to lofty systematic reviews and clinical trials. Clinical trials best influence recommendations because they putatively have the greatest internal validity.1 This assumption is based on sound research ethics, such as scientific competence and good faith actors, as well as observed differences in outcomes. An EBP blind spot emerges when fundamental assumptions are unmet. Based on findings of a 2018 PEDro evidence summary in BJSM 2 and elsewhere,3 it now seems clear that scientific research in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) resides in a blind spot.

ME/CFS—a multisystem condition
ME/CFS is estimated to affect 836 000 to 2.5 million people in the USA.4 Ninety per cent of cases are thought to go undiagnosed,4 suggesting that people with ME/CFS are substantially undercounted, underdiagnosed and undertreated. Substantial literature exists to support that ME/CFS is a multisystem condition that appears associated with a combination of genetic, cellular and systemic metabolic deficits in …

https://bjsm.bmj.com/content/early/2018/07/17/bjsports-2018-099553

Behind paywall
Click to expand...

It’s an excellent short paper, my science writer friend George Lumison (who has himself written eloquently on PACE several times) just sent me the pdf though I don’t have permission to share. Thank you to the authors for articulating the blindspot in ME research so well and concisely.
 
You must log in or register to reply here.
Back
Top Bottom