COMET initiative: Core Outcome Set for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Andy

Andy

Retired committee member
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) a long-term, complex, debilitating disorder associated with poor health-related quality of life and declined functional status for individuals and a significant economic burden on society. CFS/ME is defined by symptoms and patient’s constraints on daily living is influenced directly by symptoms.

We will develop a core outcome set for CFS/ME following recommendations for developing core outcome set (COS) from COMET (Core Outcome Measures in Effectiveness Trials), COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments), and OMERACT (Outcome Measures in Rheumatology). We will conduct two scoping reviews of qualitative research and interventional studies. To select the most important outcome measures for CFS/ME, after the evidence synthesis, we will use the Delphi process involving patient partners and clinicians in this area and a modified Nominal Group Technique to achieve consensus. The COS for CFS/ME will inform outcomes that are measured and reported in future studies in this area, including systematic reviews, clinical trials, and clinical practice guidelines.

Contributors
Dena Zeraatkar and Jason Busse from McMaster University, Hamilton, Canada

Further Study Information
Current Stage: Ongoing
Date: August 2022 - December 2022
Funding source(s): None

https://www.comet-initiative.org/Studies/Details/2103
 
Dr. Busse’s clinical interests include insurance medicine, orthopedic trauma, chronic pain and other medically unexplained syndromes, and management of complex disability. Dr. Busse is also interested in methodological research including expertise-based randomization and the use of composite endpoints in clinical trials.

I'm very cautious about non medical persons investigating 'unexplained syndromes' and management of "complex disability'.
 
My education lets me down but reading this made me chuckle "Delphi process" ---- does that involve visiting some "mystic" who says some profound things --- which you are required to believe have meaning i.e. even if you don't understand them at the time?

Could you skip a couple of thousand years and check activity levels pre/post intervention (FitBit etc.), check whether school attendance has improved, hours worked increased ----. OK the Delphi bit is presumably how you scam people into believing sham treatments work - so best not to remove that!
 
The authors of the MetaBlind study had a more cautious interpretation of their findings than Busse. They wrote:

"We are unclear to what extent our results show that blinding is less important than previously believed, show the limitations of the meta-epidemiological approach (eg, residual confounding), or show a lack of precision in the comparisons made."​
 
ME/CFS Skeptic said:
The authors of the MetaBlind study had a more cautious interpretation of their findings than Busse. They wrote:

"We are unclear to what extent our results show that blinding is less important than previously believed, show the limitations of the meta-epidemiological approach (eg, residual confounding), or show a lack of precision in the comparisons made."​
Click to expand...
Yea and why publish crap when you could easily include objective outcome indicators like FitBit, hours worked, attendance at school/education --- OK those are inconvenient i.e. since they show your intervention doesn't work.
 
Honestly it's hard to miss the pattern that people who work explicitly in research methodology and trials, basically in EBM, seem to be the worst when it comes to research quality. There's this guy, then of course Paul Garner, whose "expertise" is clinical knowledge (imagine that) and Wessely who has clearly designed a model of experiment that basically serves to launder opinions. And of course all of Cochrane, which seems to have perfected the art of lying to themselves.

Seriously some of the worst commentary I have seen out there, things like "if you can't blind, well, that's it just keep going no need to consider anything" and incredibly tortuous circular logic from people proudly espousing EBM labels on their bios. People who will go back and forth criticizing features of a study while they excuse the same of others, all clearly depending on their preferences and biases.

It seems that the expertise that has been developed is not one where research produces quality output, rather ways to basically meet your expectations regardless of what they are studying.

If there are spin doctors, these people are the spin lab researchers, they produce the disinformation that is used to spin pseudoscience.
 
Method(s)


- Consensus meeting
- Delphi process
- Nominal group technique (NGT)
- Systematic review
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Their methods seem to consist of asking people what they prefer. I would have thought the starting point for outcome measures would be a systematic evaluation of the basic properties (such as do they have sufficiently good properties to measure change, if they are questionnaires do the questions capture what is intended when used on a given population). We know that favourite outcome measures in many CFS trials fail on basic properties - yet they are popular and could come out of such a process being selected.
 
Can someone explain what a "core outcome set" would look like? Are they trying to decide which metrics are most important to measure? Would it be like, thru this process we've found that the best measures of this illness are: the fatigue scale, and employment status? I mean, what is the end product supposed to be exactly?
 
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