Open (International) Survey: Can we reach consensus on an ME research case definition?

Dolphin

Dolphin

Senior Member (Voting Rights)
From LinkedIn:
Leonard Jason
Director, Center for Community Research, DePaul University

I invite those with ME, ME/CFS, and CFS, their families, healthcare providers, and researchers to participate in an online survey (link below) for a research study on their perspectives on case definitions and cardinal symptoms of this illness. The results of this survey will shed light on areas of contention in hopes of finding a consensus.

The survey will take approximately 10-15 minutes of your time. More information is provided on the first page of the survey. You can access the survey at the following link: https://lnkd.in/e9QvgNEi
Thank you for your assistance. Lenny Jason
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Principal Investigator: Jada Cripe

Institution: DePaul University, USA

Faculty Advisor: Leonard Jason, PhD

Research Team: Suvetha Ravichandran

We are conducting a research study because we are trying to learn more about the barriers to reaching and obtaining an ME research case definition. We are asking you to take part in this research because you are either someone living with this disease, a patient representative of someone with this disease, or a researcher focused on assessing critical issues around diagnostic criteria for this disease.

You must be age 18 or older to be in this study. This study is not approved for the enrollment of people under the age of 18. If you agree to be in this study, you will be asked to fill out a survey. The survey will include questions about preferences regarding case definitions and severity measures. If there is a question you do not want to answer, you may skip it. The study should take about 10-15 minutes to complete.

Research data collected from you will be anonymous. Since your information is collected online in an anonymous way, we will not be able to link your responses back to you. So, your responses will remain confidential. We will not try to re-identify the information or contact you. Your participation is voluntary, which means you can choose not to participate. There will be no negative consequences if you decide not to participate or change your mind later after you begin the survey. You can withdraw your participation at any time prior to submitting your survey. If you change your mind later while answering the survey, you may simply exit the survey.

Once you submit your responses to us online, we will be unable to remove your data later from the study because all data is anonymous and we will not know which survey response belongs to you. If you have questions, concerns, or complaints about this study or you want to get additional information or provide input about this research, please contact Jada Cripe at jcripe1@depaul.edu, Leonard Jason at ljason@depaul.edu, or Suvetha Ravichandran at sravich2@depaul.edu. If you have questions about your rights as a research subject, you may contact Research Protections in the Office of Research Services at orp@depaul.edu. You may also contact DePaul's Office of Research Services if:

• Your questions, concerns, or complaints are not being answered by the research team.

• You cannot reach the research team.

• You want to talk to someone besides the research team.

By selecting "Yes", you agree to participate in this study. You may print this information for your records.
 
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I cannot see this approach getting anywhere. I logged on to the survey and many of the questions I could not usefully answer.

I don't think it helps calling it ME and including ME/CFS and CFS. It isn't even clear what concept they are wanting to define. For me this approach is back to front.
 
The first couple pages of questions were way too oversimplied. Half of them I wanted to answer “it depends” or “sometimes” instead of agree/disagree.

Then the questionnaires were all quite meh. But I feel like they had very different scopes. Like I think the NICE severity scale is decently fit for purpose. So is the FUNCAP. But they aren’t really comparable one is a 1 question approximation the other is a full on survey with dozens of questions.
 
The DecodeME results showed that the DecodeME questionnaire, based on IOM and CCC criteria, selected a sufficiently well-defined cohort of more than 15k participants with ME/CFS that were genetically different to controls. I see no reason for yet another definition, or for those definitions not to be used at a minimum in all future studies.
 
Utsikt said:
At least we got to see how bad most of the scales are..
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Indeed

Still worth filling in the questionnaire if you have the capacity. Otherwise there’s a risk they get all positive answers and then they say, see patients all agree these things are useful

I skipped quite a few questions and just concentrated on the ones I thought were most important and either had a clear agree or disagree answer or, if they were of the ‘it depends...’ sort, that I felt strongly enough about them to elaborate the free text box

If enough people downvote the least helpful questionnaires and upvote the better ones like FUNCAP and that gets written up in a published paper, that could help increase researcher awareness of the FUNCAP option

There’s also a free text box where you could point out that wrangling diagnostic criteria isn’t high priority right now, or that researchers that don’t have an expert clinician feeding them participants could usefully follow the DecodeME method of screening
 
I have just filled in the questionnaire. It seems to be mainly about various scales and questionnaires for assessing illness severity and function rather than case definition. There's nothing about diagnostic criteria. I'm not really sure what the purpose is. If you want to add comments, take notes as you go along as the only chance to do so is at the end, by which time I was too befuddled by reading all the different severity scales and questionnaires to add anything useful.
 
There’s always an xkcd cartoon!

I’ve started to go through now and am also a bit unclear on the value.

For decades, the lack of a consistent research case definition has hindered progress in ME/CFS research.
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@Andy makes a great point, it’s been shown that criteria are not a barrier to good research. Other things like rigour, scale and funding may well be.

It seems this has been supported with a grant from the MEA, it would be interesting to know how much is being spent
meassociation.org.uk

Research: New Study to Harmonise Research Definitions in ME/CFS - The ME Association

The ME Association is delighted to announce that it has […]
meassociation.org.uk meassociation.org.uk
 
Given how important precision is in research, phrases such as this frustrate me.
Jason said:
I invite those with ME, ME/CFS, and CFS
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This implies that these are three separate things. I'm guessing that he doesn't actually mean that, that he means that with anyone with those diagnoses are welcome to complete the survey, but accuracy matters.

hotblack said:
It seems this has been supported with a grant from the MEA, it would be interesting to know how much is being spent
meassociation.org.uk

Research: New Study to Harmonise Research Definitions in ME/CFS - The ME Association

The ME Association is delighted to announce that it has […]
meassociation.org.uk meassociation.org.uk
Click to expand...
Oh FFS, more money wasted.
 
I don't think a single definition is needed but I suspect what may be useful is a collection of material that could be used selectively by researchers to select patients for a given piece of research. Having a collection of material, guidance etc would hopefully help a group to get going faster and provide a degree of consistency.

I think Decode has a set of people who have given consent to be contacted for other work (and their questionnaire results) so this would seem like a great resource (for UK based scientists).
 
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