Open GEM study - Prevalence of genetic diseases in ME/CFS patients, 2022, Esther Crawley, Bristol University

I think the core research being proposed here is useful. If the recruitment is done well and honestly, and there really is the option to not provide one's DNA and data for other studies, then I think it could be fine. It would be a shame to torpedo the study if both the intent and the practice is and will be ok.

Participants could just choose not to answer the anxiety and depression survey, and not agree to DNA and data being used other than to perform this diagnostic survey.

I just think it's important to understand who the people are behind the study, and what machinery they have in place to help ensure that people donating data aren't inadvertently helping to produce bad science that feeds the stigma.

I wonder if someone like @dave30th David Tuller could interview the project director to get some answers?
 
On twitter, someone pointed out the Depression and Anxiety questionnaire used would give false positives based on being sick.

Quote:

For example they ask things like “do you take care of your appearance as much as you used to”

Now in energy limiting illness we often are unable to, so no we don’t, but it’s not depression.

They also ask “do you look forward to things as much as you used to”…well, no!​

https://twitter.com/user/status/1800923710637166703
Click to expand...
 
Problems with HADS have been discussed on S4ME before; I did notice, though, that they're using a different scale for children:
5. Anxiety and depression for children and young people is measured by the Revised Children’s Anxiety and Depression Scale which is 47 items. Participants answer these items on a 4-point Likert scale from 1 (never) to 4 (always) at baseline.
Click to expand...
This one similarly has questions at least overlapping with core or common features of ME:

Q11 "I have trouble sleeping"
Q15 "I have problems with my appetite"
Q19 "I have no energy for things"
Q21 "I am tired a lot"
Q25 "I cannot think clearly"

Also Q24 ("When I have a problem, my heart beats really fast") and Q36 ("I suddenly become dizzy or faint when there is no reason for this") will overlap with postural tachycardia, Q40 ("I feel like I don’t want to move") may apply to anyone who is sufficiently severely affected that any movement will cause PEM and Q30 ("I worry about making mistakes") will probably be answered in the affirmative by anyone with brain fog.
 
I raised concerns around HADS and Chalder with the researcher, after having submitted my responses. They acknowledged the limitations and said they're working on a new set of questions as it's something they realise there's a need for ME/CFS.
 
You must log in or register to reply here.
Back
Top Bottom