[National Institute of Health] Community Advisory Committee – Guidelines for the Design of Clinical Studies in ME/CFS

[Andy]

"The Community Advisory Committee (CAC) for the NIH ME/CFS Research Network was established to bridge the gap between researchers and the ME/CFS community with the goal of accelerating the pace of ME/CFS research. The CAC is a group of 15 individuals from various professional backgrounds, all of whom have lived experience of the disease.

The CAC – Study Feasibility working group developed this quick reference guide to aid researchers in the design of clinical studies and the development of IRB protocols for studies involving the ME/CFS population. These recommendations provide the patient perspective on accommodating the unique sensitivities and limitations of the population to produce more robust studies by improving study retention and completion."

http://cfsformecfs.org/2022/04/15/c...for-the-design-of-clinical-studies-in-me-cfs/

 

[Tom Kindlon]

These look like they could be useful for researchers around the world

I’ve done a Twitter thread to highlight them a bit

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• Provide compensation for study participation preferably in the form of cash or a credit card. Single vendor gift cards are discouraged

Cash payments could affect some social security payments while (small) gift card vouchers might not cause such problems

 

[rvallee]

Yeah oddly enough, this would exclude me if it were part of it. I can technically have some limited supplemental income but it's a hassle and I don't know the impact it could have on my disability. It's not worth the trouble.

All expenses paid with consideration to the patient's condition is good enough, cash incentives to disabled people really show how little even people in healthcare know about what it's like to live with those sweet, sweet secondary benefits they seem to think grant us middle class quality of life.

 

[Samuel]

looks like progress. i'd like it to mention that subjects have often had to be their own doctors, whether they wanted to or not, often for their entire lives. therefore, they often have an interest in getting study data [for themselves and where possible for all] and results. i'd also like it to mention the limitations of severe more in ability to participate [e.g. no smartphone] and what some solutions are. i like the sampling bias references. i like "Avoid early morning start time and limit the duration of visits" although the prevalence of circadian issues, such as keep popping up in m.e. although not a problem for all, should be a point.

"The Community Advisory Committee (CAC) for the NIH ME/CFS Research Network was established to bridge the gap between researchers and the ME/CFS community with the goal of accelerating the pace of ME/CFS research. The CAC is a group of 15 individuals from various professional backgrounds, all of whom have lived experience of the disease.

The CAC – Study Feasibility working group developed this quick reference guide to aid researchers in the design of clinical studies and the development of IRB protocols for studies involving the ME/CFS population. These recommendations provide the patient perspective on accommodating the unique sensitivities and limitations of the population to produce more robust studies by improving study retention and completion."

http://cfsformecfs.org/2022/04/15/c...for-the-design-of-clinical-studies-in-me-cfs/