What research do you want to see? (study ideas)

Forbin said:
I'd be interested in a prospective study that tries to capture data on patients as the severity of their symptoms undergoes long term shifts.

Anecdotally, it seems like some patients experience a level of improvement (though not necessarily recovery) during a window of 3 to 5 years after onset.

It would be interesting to have a lot of biological data on a group of patients at 2 years after onset and then follow up on those who improve prior to (say) the 6th year and see how their post-improvement data compares to their earlier data.

The idea would be to compare data from the same person over time as their severity changed. Obviously, you could also capture changes which might occur as severity increased. That might be harder because a lot of the decline might happen in the first year - before a patient even qualifies for a diagnosis of ME/CFS.

Anyway, it may be naïve, but I'm thinking that if you want to find clues about what's causing the problem, look at what (if anything) is changing when patients get better or worse.

The answer might be something non-intuitive, like if some readings got objectively "worse" by normal standards when some people improved - which might indicate an adaptation to the disease.
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It sounds like something similar the OMF Melbourne study is doing - although not to the length and extent you propose.

In its first project, the Melbourne research team will characterize the biology of people with ME/CFS by continuously monitoring their health data and sporadically sampling and analyzing their blood and urine over the course of a year. Data will be analyzed to identify characteristics of disease severity in individuals, then compared across patients to identify patterns — helping reduce the complexity and length of the personalized medical approach.
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Forbin said:
I'd be interested in a prospective study that tries to capture data on patients as the severity of their symptoms undergoes long term shifts.

Anecdotally, it seems like some patients experience a level of improvement (though not necessarily recovery) during a window of 3 to 5 years after onset.

It would be interesting to have a lot of biological data on a group of patients at 2 years after onset and then follow up on those who improve prior to (say) the 6th year and see how their post-improvement data compares to their earlier data.

The idea would be to compare data from the same person over time as their severity changed. Obviously, you could also capture changes which might occur as severity increased. That might be harder because a lot of the decline might happen in the first year - before a patient even qualifies for a diagnosis of ME/CFS.

Anyway, it may be naïve, but I'm thinking that if you want to find clues about what's causing the problem, look at what (if anything) is changing when patients get better or worse.

The answer might be something non-intuitive, like if some readings got objectively "worse" by normal standards when some people improved - which might indicate an adaptation to the disease.
Click to expand...

In the late 1990s, I gave lots of blood to be studied like this at the Hunter Hopkins Center in Charlotte, North Carolina. Dr. Chales Lapp was unable to find anything that pointed to my improvement. I hope 20 years later the OMF is able to find some clues.
 
Replication. In a way, the ME research field has it's own replication crisis, in that there are rarely attempts to independently replicate anything that is found. So I'd like to see efforts made to replicate all the things!
 
Andy said:
Replication. In a way, the ME research field has it's own replication crisis, in that there are rarely attempts to independently replicate anything that is found. So I'd like to see efforts made to replicate all the things!
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This! And again, for emphasis: THIS!!!

Just how do we get funding for replication studies? The whole research ecosystem seems to be set up so that it's those chasing the latest and newest angle with the shiniest toys are the ones who get whatever little funding is available for biomedical ME research. Could the charities play a role by setting aside a certain percentage of their grants for replication studies?
 
Mike Dean said:
Agreed, a scoping review of the thousands of studies ought to identify at least a few that deserve replication.
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I wonder what might be the best approach to this? Some of our best-known researchers are pretty busy with the grants and research programmes that they have got, though I'm sure there are scientists among them who could find some time to devote to this.

Would there be any value in recruiting (assuming funding could be found) a panel of experienced researchers who are sympathetic towards biomedical research on ME, but are at least one step removed from the work of the last few years? Perhaps they could bring some valuable perspective to a review of the evidence to date.
 
Kitty said:
I wonder what might be the best approach to this? Some of our best-known researchers are pretty busy with the grants and research programmes that they have got, though I'm sure there are scientists among them who could find some time to devote to this.

Would there be any value in recruiting (assuming funding could be found) a panel of experienced researchers who are sympathetic towards biomedical research on ME, but are at least one step removed from the work of the last few years? Perhaps they could bring some valuable perspective to a review of the evidence to date.
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Maybe something for the PSP to make a case for. There would be several strands - in vitro, in vivo, clinical etc. Mapping where early research has foundered or moved to the next level would definitely be useful.
 
Two questions for #pwme: 1. if you could share ~5 studies with everyone who isn't familiar with the biomedical understanding of ME, what would they be? 2. what 5 topics/areas of inquiry would you want to be given more research? (let me know whether you're answering 1 or 2!)
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Code: 
https://twitter.com/ahandvanish/status/1358816485674790913

 
I'd be interested in having this replicated:

https://www.sciencedirect.com/science/article/pii/S2467981X20300044

429 ME/CFS patients were studied: 247 had a normal heart rate (HR) and blood pressure (BP) response to HUT, 62 had delayed orthostatic hypotension (dOH), and 120 had postural orthostatic tachycardia syndrome (POTS). We also studied 44 healthy controls (HC). CBF measurements were made at mid-tilt and end-tilt. Before mid-tilt, we administered a verbal questionnaire to ascertain for 15 OI symptoms.
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Merged thread
Every day I come across ideas for studies. And yet, when I come to put together a list, I struggle. So, I thought we could jot down ideas as we think about them or see them, ideally with a link to a thread that discusses them more.

We have had a Members Only thread about this, but I reckon a public one is worthwhile.
 
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