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

Andy said:
I created a very similar thread, with the intention of setting up a poll based on the results. Unfortunately the poll part of that keeps slipping down my to-do list but the thread can be seen here, https://www.s4me.info/threads/what-...f-main-themes-before-setting-up-of-poll.2739/
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Thanks, Andy, I thought it likely that something similar had been done before, though I didn't see one in a quick search.

I think it would be good if there could be some sort of briefing done for Ponting.

I also think it would be worth splitting any survey/poll in two, as responses seem to fit into two different groups, the general ('find a biomarker') and the more specific ('test x').
 
There's actually a third group, although, based upon the responses so far, it may only consist of myself.

I would like to see successful research, research that finds something useful, even if it's only in proving I'm (probably not /may not be) a lazy, malingering scumbag with delusions of illness and disability.

I don't have the knowledge, experience, background or influence to suggest, or direct, efforts into any particular direction - I don't have the cognitive ability left to evaluate much of even the dumbed down summaries on here (thank you to the people who do them tho) so I don't really care what direction, as long as it's successful and it helps us, soon, very soon.
 
JohnTheJack said:
I think it would be good if there could be some sort of briefing done for Ponting.
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That was the ultimate aim with the poll, to then be able to say to researchers, including Chris Ponting, here you go, this is what our members want investigated. When I spoke to him at the IiME he was interested in hearing the communities opinions on research priorities.

JohnTheJack said:
I also think it would be worth splitting any survey/poll in two, as responses seem to fit into two different groups, the general ('find a biomarker') and the more specific ('test x').
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Yeah, probably a good idea. One of the reasons it's slid down my priorities is that I haven't had the brain power to group the results into reasonable categories.
 
Andy said:
That was the ultimate aim with the poll, to then be able to say to researchers, including Chris Ponting, here you go, this is what our members want investigated. When I spoke to him at the IiME he was interested in hearing the communities opinions on research priorities.


Yeah, probably a good idea. One of the reasons it's slid down my priorities is that I haven't had the brain power to group the results into reasonable categories.
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If I may make another suggestion: the poll should not pit one idea against another but should offer members the chance to support more than one idea. Perhaps the question could be more along the lines of 'Do you think this is a good suggestion?' and then a follow-up of 'Should this be be High, Moderate, Low priority'.

It may also be worth including the sensible ideas without much support. Even they may prompt something or they may be relatively easy to fund and so could quite easily be carried out

The briefing could possibly be in two parts: these are the ideas; this is the support they got.
 
I'd like the American CPET exercise testing done on a sizeable level to get that abnormality established as fact so it's recognised, especially in uk and countries heavily pro GET. Comparing us with MS , heart disease and depression and also with CF without PEM might help to make the picture clearer around PEM.

I'd like the metabolomic research ramped up and again established and contrasted with other illness. Interestingly in the uk when the MEGA study was proposed it was on the back of the naviaux study and there was lots of metabolomic protonomic talk with suggestions uk were trying to join in this research, that's subsequently changed to just genetics talk I think, with MEA funding the most interesting cellular energy study in uk.

I'd also like more on the Australians ideas around calcium and ion issues particularly if this is affecting cognitive function, I'd like more on baranuiks previous suggestion that brain axon pathways were affected; I'd like to learn more about brain hypoactivity and why it is there.
 
I'd like all ME/CFS research going forward to have better screening mechanisms integrated into their processes. I fear too many conditions and pathogens are slipping by when they are discreet and should be excluded as such.

For instance, how are not channelopathies routinely checked for as best as we can?
 
is there any value while most of the focus is on the key stuff while we are waiting for biomarkers in spending a bit of money doing some tests to show what works best in practice to help people with symptoms, sleep - eg Amitryptyline vs Melatonin vs anything else thats currently being used - eg some people think amitryptiline is a wonder drug but Im not convinced it is helpful due to the hangover effects which I didnt realise the full extent of until I stopped taking it - whereas with Melatonin I dont get any hangover
muscle weakness - trying existing medications that are used in other conditions and showing whether they make any difference to ME folk
pain - MS folk can have sativex now if they are going to do any further testing on MS folks lets have a group of ME folks testing it as well.

how about some UK sports science folk picking up on Workwell approach on CPET, what about some stuff on what the muscle weakness we have does to ability to walk eg are there any gait issues that should be looked for in ME, some folks have said they can't lift their arms up - what is that about and should it be looked for in diagnosis/assessment of severity

actually I think I might just be echoing @arewenearlythereyet but also rambling a fair bit
 
NelliePledge said:
is there any value while most of the focus is on the key stuff while we are waiting for biomarkers in spending a bit of money doing some tests to show what works best in practice to help people with symptoms, sleep - eg Amitryptyline vs Melatonin vs anything else thats currently being used - eg some people think amitryptiline is a wonder drug but Im not convinced it is helpful due to the hangover effects which I didnt realise the full extent of until I stopped taking it - whereas with Melatonin I dont get any hangover
muscle weakness - trying existing medications that are used in other conditions and showing whether they make any difference to ME folk
pain - MS folk can have sativex now if they are going to do any further testing on MS folks lets have a group of ME folks testing it as well.

how about some UK sports science folk picking up on Workwell approach on CPET, what about some stuff on what the muscle weakness we have does to ability to walk eg are there any gait issues that should be looked for in ME, some folks have said they can't lift their arms up - what is that about and should it be looked for in diagnosis/assessment of severity

actually I think I might just be echoing @arewenearlythereyet but also rambling a fair bit
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It is a shame people can't just try melatonin rather than research funds having to prove it but aren't MEA funding a study?

I think it's a shame CMRC conference haven't invited or procured the workwell type scientists. Whether that's political but people don't get interested in what they don't hear about. Just imagine a workshop where pro GET researchers vs anti GET sat around in discussion.

Julia Newton recently published a paper, I think her rituximab for liver disease? And mentioned that there was raised anaerobic threshold which sounds like she incorporated some type of exercise testing, although ultimately the study was negative. Do her liver patients experience our type of PEM as well as fatigue.
 
Cinders66 said:
It is a shame people can't just try melatonin rather than research funds having to prove it but aren't MEA funding a study?
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I know MEA have asked questions about it on website to get some info on peoples experience of it would be good if they could do something to back up its use with acceptable evidence. I feel uncomfortable taking it without it being on my medical record or any proper discussion with GP about it. Im not objecting to meeting the cost as it was literally $8 for a years supply. I also feel its not right people are stuck with amitryptyline as the standard approach.

Cinders66 said:
I think it's a shame CMRC conference haven't invited or procured the workwell type scientists. Whether that's political but people don't get interested in what they don't hear about. Just imagine a workshop where pro GET researchers vs anti GET sat around in discussion.
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I think the pro GET people would be surprised by workwell as they arent against activity or even exercise in the right circumstances but what they use is actually based on evidence and avoiding harm - you would hope that Physios wouldnt take much convincing
 
Being very specific, I'd love to see someone tackle the alcohol intolerance thing. A poll over on PR in 2010 had 62% unable to tolerate even small amounts of alcohol, and only 14% reporting no change or being able to drink more (! lucky buggers).

This seems like such a specific and commonplace thing among sufferers, it's hard to believe that studying what's happening when people in that 62% drink wouldn't lead somewhere interesting. Something's definitely up there.
 
FreeSarah said:
Being very specific, I'd love to see someone tackle the alcohol intolerance thing. A poll over on PR in 2010 had 62% unable to tolerate even small amounts of alcohol, and only 14% reporting no change or being able to drink more (! lucky buggers).

This seems like such a specific and commonplace thing among sufferers, it's hard to believe that studying what's happening when people in that 62% drink wouldn't lead somewhere interesting. Something's definitely up there.
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The thing is that so many doctors, and their patients (even once diagnosed), are probably unaware of the 'full' list of potential ME symptoms, alcohol intolerance being one of them.

This is where all these epidemiology studies should have gone rather than looking at things like childhood trauma.

Adverse reactions to various drugs is another one, including antibiotics and anesthetics which you would think would be crucial for all doctors to be aware of. Big genetic studies might sound fascinating but looking at the obvious might also reveal a lot without the huge expense.
 
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Sly Saint said:
The thing is that so many doctors, and their patients (even once diagnosed), are probably unaware of the 'full' list of potential ME symptoms, alcohol intolerance being one of them. This is where all these epidemiology studies should have gone rather than looking at things like childhood trauma. Adverse reactions to various drugs is another one, including antibiotics and anesthetics which you would think would be crucial for all doctors to be aware of. Big genetic studies might sound fascinating but looking at the obvious might also reveal a lot without the huge expense.
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For sure. I was very late joining in with forums like this, not doing so until more than 10 years into illness, and I was astonished to find some of the things I shared with other patients, alcohol intolerance being one of them. It seems such a simple, inescapably physical thing that it's certainly one of the places I would want to start as a researcher. And think how easy it would be to get healthy controls involved — free booze!

But yes, you're right. Researchers are presumably not picking up on things like this because they simply aren't aware of them. How do we put that right?
 
A lot of researchers are pointing at the gut at the moment, so I would like to see that research taken further.

I would like to see clear subgroups emerging, because than there can be more specific research on a specific group of people. I have the feeling a lot of effort is wasted now on having very wide criteria for participating in studies.

I would like to see researchers working more together, replicating research as well. I have the feeling everyone is working on their own. I hate to see the headlines: "ME/CFS is not in the head!! We found something that is off!!!" I have the feeling I see a headline like that about every month....
 
I'm changing my answer.

Given that no one, literally no one, seems to have the first clue about what's gone wrong, and are essentially just shooting in the dark with pet theories, and it seems to take years for each shot to be fired, possibly trying to figure out what's wrong, and then trying to figure out how to fix/mitigate it, isn't the best option.

What we need is a massive investment and research effort into creating borg nanites - we may not have a clue what's gone wrong, but a general purpose tool like borg nanites could fix it anyway.

Sure there are downsides, but who doesn't want to be green, being green is the in thing right now.
 
I have just watched Avi Nath's talk at the IiMER conference this year on the DVD. I think the in-depth in-house study they are doing at NIH with 40 people who have had ME/CFS for less than 5 years and 40 healthy controls seems like a great project.

I'd like to see it extended to add 40 people who have had ME for a long time, say more than 10 years and are as sick as they can get who can still manage to travel to the centre and cope with the multiple tests. Being realistic, that means moderate ME rather than severe.

I'd also like to see a much bigger study at the same centre and other centres around the world with a few hundred pwME just being tested for the things that seem most significant on the original study.

And I'd like to see that whole process accelerated massively so what I describe can be finished in a couple of years. Wishful thinking...
 
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