Open (Victoria, AU) Study looking for healthy people aged 12-19 years to participant in an adolescent ME/CFS research study.

https://vist.ly/38j43

Healthy Adolescents: We need you!
Researchers at Murdoch Children’s Research Institute (Parkville, Victoria) request your contribution to research that hopes to improve the lives of adolescents with Chronic Fatigue Syndrome.

You or someone you know might be suitable if you/they are:

• Aged between 12 and 19 years
• Healthy
• Interested in brain function, thinking, and fatigue
• Able to attend the Royal Children’s Hospital for one morning (parking reimbursed)

The study involves completing some problem-solving puzzles and questionnaires, an optional MRI and blood and urine collection.

For more information scan the QR code or to register your interest, please feel free to contact the researchers from the Chronic fatigue Research Team:

Email: Darcy Tatanis at cfsme.research@mcri.edu.au

Ph: 0447 902 442

 

Yeah we have submitted protocol for publication.

This is an NHMRC funded study, the point was to build a lot of biological information on teenagers with ME/CFS.

ME and HC go to the clinic for a blood draw, urine samples, cognitive tests and MRI. Blond draw is for extensive omics (metab, proteomics, transcriptomics, genomics) and some cellular studies for labelled substrate.

ME are provided with longitudinal kits to collect blood samples at home on baseline and PEM days. They have biostrap wearables and at home symptom surveys.

 

No there isn't detailed psychological surveys for the teenagers to my knowledge. There are scales for cognition, quality of life, pain, fatigue. There are behaviour surveys for guardians. Closest thing to what you are asking that is used is the HADS I think.

Which investigator used a question on spiders? They only use standard scales, its possible that sometimes you might get a odd question on a scale but these scales are standard for all manner of disease.

These investigators see the disease as a physical disease but they do care about psychological well-being given that ME/CFS in teenagers can be even more detrimental for mental health than in adults. There research is largely MRI imaging these days.

Also, before consent the patient and guardian are given full details and able to talk through any questions.

 

Harm is an important issue. Unfortunately, almost every study on patients causes harm. Even a blood sample or the energy to fill a survey. Do you think researchers do a good job explaining all the dangers of being involved in research broadly?
It is difficult to assess because it varies from person to person. At what point do you let the participant make a judgement call?


Also, I think a good researcher shouldn't have views based on anything but data. I think the problem with the psych research we all know was damaging is that it wasn't conducted by good researchers, they were clearly biased.

We scientists are meant to be testing things that might disprove our theories, not changing tests or data to fit our theories. We all here think that me/cfs is not a psychiatric disease, but we should still conduct psychiatric tests to prove or disprove our theory. I think this field and patients have been hurt by bad faith researchers/clinicians. I don't know enough to know if poor research is common in psychiatry or not.

 

On @Hutan's point about psychological questionnaires, the problem is that they often appear to be sneaked into assessments. If there's a good reason to do them and the participant knows about them from the outset, then fair enough. There should never be "but we always ask this" components, though. Every section—even whether or not it's necessary to have participants' postal addresses—needs to be justified, every time.

More generally, one of the things some researchers get wrong is failing to understand the importance of allowing people to review all the questionnaires before they decide whether to consent. I've done several web-based versions that can't be progressed until the questions on the current screen are answered, and that really isn't good enough. I won't complete them because I can't give informed consent.

 

You can ask your data to be deleted at any time if you participate in research. And it will be adhered to. This should be in all consent forms

Reviewing some scales may not be possible because of impact on the test itself. It can also be quite lengthy to review. It's not really about sneaking them in, it's just a lot of info to provide, the purpose and the theme of the questions would be added. We don't name every metabolites or protein or SNP we'll be trying to measure either.

Maybe making it clear you can ask for data to be deleted instantly at any point. Would that help?

 

No, that isn't really what I'm trying to get at—I know consent can be withdrawn.

It's more that, as a theoretical participant:

• If there's a psychological screening, as an ME/CFS patient I might want to know the reason for its inclusion. That doesn't mean an analysis of every question, just a paragraph or two saying what the screening tool is for, and what would be lost if it weren't used. ME/CFS research has such a terrible history that these questionnaires need to be regarded as almost as sensitive as, for instance, asking people questions about their religious beliefs.

• If I weren't happy that the screening justified, or it had mandatory questions I didn't want to answer, I could choose not to take part. As long as I could see questions beforehand, no one's time would be wasted; I wouldn't start screenings that I'd abandon partway through, and the research team wouldn't be tied up answering my questions.

Going back to me rather than my theoretical participant—I don't mind that, I've already done it a couple of times. Questionnaires just need to be available as PDFs, or set up online so that anyone who wants to read it can skip through each screen without having to commit answers.

I'd only want to preview the questions on the screening for transparency's sake. I don't need to understand the scales or the scoring system.

This whole issue of psych screening may become less sensitive as trust builds between patients and researchers, but there's still a long way to go—which is why it's great that you're giving up your time so generously to engage with us.

 

I think there is a survey or questionnaire (from my memory might be a london clinic?) that asked children questions like ‘do you steal things’ that’s one of the more recent issues ?

which is of course pathetic behaviour of both writer behind it and shows how much ethics boards have gone to the dogs . ME has been the area where things no novelist could think would happen, or wouldn’t use due to believability get away with it because the more outlandish it is the more people assume it can’t have happened.

it indicates that under certain hierarchies children being shipped in under ME and other specific illness terms have been allowed to be used as a free for all that’s almost beyond where eg you get a survey on an airplane from a holiday company and they either sold or let their mates in a tv company add in questions to do with that. Then about sportswear. And so on. Until the survey is 200 questions long adding all sorts of random stuff

At least in that circumstance it’s only being trapped on a flight that might mean anyone fills any of it in plus incentive of prize and small risk. You feel less conned when you’ve wasted 45min and give up having turned the page to see there are ten more because most don’t have limited energy and wouldn’t have been using that time to do something more vital anyway. There was no power difference

But kids feeling the pressure to help seem to be being taken advantage of snd the ‘could get harmed crossing road’ equivalent when people raise inappropriate questions and unnecessary length of surveys is often their common answer.

it means everyone now has to ask sadly. Blame the bad ‘researchers’ I say but sadly it somehow gets reflected on the people who’ve seen it all and have to warn people or double check

I understand the dilemma though re questions and whether they can be given out before recruitment and guarantees on it not being a fishing expedition but..

 

Excellent input from all of you.


I wonder if the psychologists are aware of the harm they've created by trying to treat in such a way that has resulted in ME/CFS patients distrusting CBT and other psychological therapies that would be needed to help anyone with the mental toll of dealing with a chronic disease with so little tools to help them.

It's just unbelievable the amount of damage that was done because a group of people thought they understood the mechanism of the disease with such little research and then developed radical methods instead of just sticking to a method to help resolve secondary mental health consequences.

 

A lot of them aren’t real psychologists anyway but nurses, physios, ‘CBT professors’ without the broad psychology that looks at whether either CBT is the right treatment or what it’s instituting as thinking is harmful or unhealthy just whether it’s effectively instigated (unlike the way ‘proper CBT’ was developed, so yes I’m surprised they let its name be used) oh yes and psychiatrists often with strange specialisms. Crawley is / was a doctor with a theoretically non-psych specialism I think.

Which is pretty weird in itself. Anyone’s allowed to whack in personality questions even though real psychology wouldn’t touch it with a barge pole because it’s based at best on correlations and claims concepts with no internal validity (everyone says something different when you pin them down to describe ‘a perfectionist’ in specifics).

 

I can’t cut and paste on phone but on that last paragraph you might want to go to the ME Association PROMS thread with Sarah Tyson and Pete Gladwell and scroll back a few pages to where survey 3 was released with new terms and conditions- which seemed to specifically include not being allowed to ask for your data to be removed after it had been filled in

 

Well I completely disagree with that.
People deserve control of their data.

 

I use the term callous indifference or wilful ignorance for the determination you get to not hear but focus on man not ball arguments to prove oneself right rather than seek to learn anything that tends to be the response of too many

there’s that wonderful delusion people can wrap themselves up in of claiming good intentions justifies all but no one really probes underneath the ‘to help’ claims enough either

I think things like eg BACMEs ‘for the public benefit’ aim in their charity statement is insightful for example

but that’s behaviourism for you (appears to act normal over healthy and/or happy)

 

Important things raised @Kitty and of course you’ve reminded me of the other issue:

using intrusive or presumptive questions and titles is a great way to filter the sample to those who agree that it was eg their obsessive tidiness mindset that triggers their ingrown toenails.