Should we be doing our own research?

[cigana]

Hi,

I often think this might be a possibility. I know many people are too ill and of course the vast majority of people are not trained scientists...but some of us should be able to make an impact and the cost of doing our own research would be much much cheaper than the standard routes.

I would like to get people's ideas on this, does anyone agree? For me I think the main problem is one of communication. Even funding is easier than being able to connect enough people together with the right skills (and illness level) in a similar location. How could we go about doing that? If I advertised here for anyone in London with an interest in science who is able to do a little amount of work, would I get enough replies? I am sure there are enough people in London who are capable, but I just don't know how to get in touch with them.

I think funding may not be so difficult as the above. "Canary in a Coalmine" managed to raise funds because it was being carried out by people who suffered the illness for people who suffered. The same would be true in our case.

Something that would require no funding, but would of course require time, would be epidemiology. If we could devise a web-based system, I think we could carry out some very impressive epidemiology which could dwarf the university studies done so far. I also personally think that if it could be shown that there are epidemiological factors at work these could potentially be game changing.

Let's think about doing the studies that no one else has shown any interest in doing for us (for a very long time)!


Let me know your thoughts

 

[taniaaust1]

Ive thought of that often and mentioned it at times. I too think we could be doing some great research amongst ourselves and costing next to nothing too as many of us already have had a lot of tests if we started looking at these results as a group we could learn a lot

eg form a group then get the answers to various questions from everyone in the group eg Do we have higher then normal amounts of MTHFR mutations among those who have ME/CFS or whatever. If we grouped well with all having the same cause-to answer science questions on this illness. We could learn big things and so many of the unanswered questions.

Even if just 30 of us grouped and worked in this way.. group needs to be formed before the various questions are asked as otherwise ones may enter the group based on what is being asked eg if someone said they were starting a group up to study how many of us have MTHFR, I bet this would cause those who know they have this to more so join.. which would screw up the results. So I suggest to go into this blind.. form a self research group and then as a group throw out what questions everyone wants to study, then get the results from everyone who's been tested for those things then compare these results to the healthy population average.

Another question I want to know is how common is low testosterone in us? and is it more common in us? From this site I think it may be more common in us unless what Ive seen is coincidental.

One of my specialists have found that low iron stores (ferritin?) is common in us. So how much more common is this? (my normal blood iron level was normal but my iron storage level was low).

There is so many questions we could get answers for if we worked together to study this illness together and it wouldnt cost us a thing.

I also want to know how much more common is orthostatic hypertension among us. I dont think that is getting paid enough attention to in ME circles. Im sure not many of us do have it but I do think that even so that we do have it far more then the healthy population. I read somewhere a large/huge study which was done on healthy people looking for this and it wasnt even found in anyone of my age in this study, it appears at times in more older people. Yet here people of a far younger age have it.

 

[alex3619]

Just to show how complicated doing this can be, my own iron is very low, but my ferritin is in the doctors running in circles panicking levels. Any study has to be researched a lot before its commenced. So planning would be in stages, with multiple teams, and any clinical component would not necessarily have to be run by the methodology design team, the goal team, the analysis team etc. Such studies would indeed be cheap, but also very slow from my experience of teams. However that does not mean it cannot be done, and I have had this conversation (a version of it anyway) with someone recently, in private conversation.

However this team approach means that as one team signs off, and another takes over on a project, then the first team can move to a new project, and so on. Think of it like a factory assembly line.

Building databases for tracking patients is already being done, and we might consider consulting with those doing this already if we want to do something ourselves.

 

[cigana]

Building databases for tracking patients is already being done, and we might consider consulting with those doing this already if we want to do something ourselves.

Do you mean HealClick, or are there other efforts?

 

[alex3619]

Do you mean HealClick, or are there other efforts?

I have heard of a few over the years. OMI for example is organizing a combined patient database.

 

[wastwater]

I think this is a very good idea

 

[WillowJ]

people shouldn't need to have previous science training, but would need to know about (self-directed study should be fine) experimental design.

 

[searcher]

Hi cigana-
I am helping out with HealClick although I don't think I have previously written about it on PR because I don't want there to be a conflict of interest. I just wanted to address your question since I feel strongly about the potential for self-directed research in this illness, especially due to the limited research being done via traditional routes.

We are planning to let people upload medical records including 23andMe so that we can try to help look for associations like those that have come up on this thread (like @taniaaust1 's MTHFR example.) One of the challenges with epidemiology-- especially in ME/CFS-- is making sure that diagnoses are accurate; we ask whether patients were diagnosed by a doctor and plan on adding questionnaires that are used by the top researchers, but it's something important to keep in mind. We also allow users to track symptoms and treatments which we hope can help users figure out some patterns that may not be obvious when there are so many variables to keep in mind.

As Alex mentioned, OMI is organizing a patient database but I don't know the details. It obviously has a lot of potential since Dr Kogelnik has the resource and experience to do large-scale studies.

If you have any questions you can message me any time. I know there are limitations to our approach and don't mind hearing criticisms.

 

[cigana]

Hi cigana-
I am helping out with HealClick although I don't think I have previously written about it on PR because I don't want there to be a conflict of interest. I just wanted to address your question since I feel strongly about the potential for self-directed research in this illness, especially due to the limited research being done via traditional routes.

We are planning to let people upload medical records including 23andMe so that we can try to help look for associations like those that have come up on this thread (like @taniaaust1 's MTHFR example.) One of the challenges with epidemiology-- especially in ME/CFS-- is making sure that diagnoses are accurate; we ask whether patients were diagnosed by a doctor and plan on adding questionnaires that are used by the top researchers, but it's something important to keep in mind. We also allow users to track symptoms and treatments which we hope can help users figure out some patterns that may not be obvious when there are so many variables to keep in mind.

As Alex mentioned, OMI is organizing a patient database but I don't know the details. It obviously has a lot of potential since Dr Kogelnik has the resource and experience to do large-scale studies.

If you have any questions you can message me any time. I know there are limitations to our approach and don't mind hearing criticisms.

Hi Searcher,

HealClick is a great start and it is good to hear you want to take things further. I have thought a lot about the online collection of data so I would be interested to be involved in any discussions you have on design. The areas I've indentified as being important are:

• having a system that is dynamic in the sense that new tests can be added over a period of time and users will get notified periodically that there are new data fields for them to be filled in.
• how to avoid fraud - we don't want false data to be entered by snake oil salesmen or Wessely et al. This would probably require credit card information.
• how to ensure the system is working correctly - the need to benchmark the results against known large-scale results from other sutdies.
• the need for controls. We should allow healthy people to join and actively encourage each PWC who joins to convince his/her family and friends to join too. But obviously this is statistically biased. This is the biggest concern for me and I'd be interested to know if you have thought about how to solve this problem.

I think HealClick could far surpass the OMI's effort, since the OMI's will always be finite because it will depend on money, and will not be able to rapdily keep up with the research (and patient self-treatment) frontier.

 

[alex3619]

Using credit card info as ID is a big NO. It creates huge problems. Even corporations like Sony have run into this. Such information creates problems as soon as its stored ... it creates a target for organized crime, a target for hackers, and scares patients away. If I had to give a number and it was stored I would not participate, and I am not alone in this.

 

[cigana]

Using credit card info as ID is a big NO. It creates huge problems. Even corporations like Sony have run into this. Such information creates problems as soon as its stored ... it creates a target for organized crime, a target for hackers, and scares patients away. If I had to give a number and it was stored I would not participate, and I am not alone in this.

I would accept that some people would not sign up as a result of this, but I haven't thought of any other way around it...can you suggest an alternative?

 

[alex3619]

Many companies use an email call back system. A valid email address is what is required. You have to reply confirming the message, and use a capcha code.

 

[cigana]

Many companies use an email call back system. A valid email address is what is required. You have to reply confirming the message, and use a capcha code.

I was more worried about one person being able to create multiple accounts, having a credit card would help make that possibility harder to achieve. Either way it is worth considering the benefits/disadvantages of different anti-fraud strategies.

 

[WillowJ]

I know of a study that required a copy of a doctor's note showing diagnosis; would that be plausible? This would begin to manage diagnosis and manage identity. (though, granted, many doctors don't use any criteria at all to diagnose CFS and non-specialists are wrong about half the time or more)

 

[place]

Healclick could be amazing if everyone put in the data. I love it. I write databases in my spare time and I'm in love with the organization of it. I like seeing the patient match up with the review of treatment. Also to organize all the doctor info. I feel that it is the best companion to PR. It helps organize all the helpful suggestions here.

Only change would be to add header fields to each of the treatement scales. So for instants: one of my symptoms are is sinus junk rinsed out. I get an option of 0-10. I would like to be able to lable what 6 is. So a 0 is 1 tablespoon of infection out, while a 5 is 1 teaspoon of clear out, and 10, I get nothing out.

For others to see how I am measuring would be beneficial. Other than that, I love that site!!!

 

[searcher]

I was more worried about one person being able to create multiple accounts, having a credit card would help make that possibility harder to achieve. Either way it is worth considering the benefits/disadvantages of different anti-fraud strategies.

I think the best way to mitigate the possibility of people creating multiple accounts is to look for duplicate IP addresses-- this is something I think many sites do. A user could potentially cheat by using a tool like Tor, but I don't think there is an incentive to go through that trouble. And asking for an email confirmation as @alex3619 mentioned also helps prevent people from easily making multiple accounts.
There are also some other patterns that help identify fraud.

@WillowJ - I wouldn't want to make it a prerequisite for using the site but we could definitely require a doctor's note or other confirmation for people who wanted to participate in specific studies. You could do data analyses only on people who were diagnosed by certain doctors in some cases as well.

 

[searcher]

Thank you so so much @place! I also worked a lot with databases before getting sick so it's been fantastic to have a structured way to store and report on people's experiences (treatment reviews, doctor experiences, symptom/treatment tracking.) @mojoey and others have put in an unimaginable amount of effort into making the site and I am really happy that it has been a good companion to PR for you and others.

 

[taniaaust1]

Just to show how complicated doing this can be, my own iron is very low, but my ferritin is in the doctors running in circles panicking levels.

That's the kind ot thing I was talking about. My CFS specialist sees this a lot in us.. its our ferritin .. but this fact isnt known out there most doctors dont check this but do just the standard blood test for iron and pronouce us as fine as that may be when in fact we may actually be classified as anemic had they done a full iron study and tested our ferritin.

If we did studies ourselves we could find out just how common this is with us and it may lead to something new to look at with that finding. There is too many areas out there which need to be looked into but never have been.

Any study has to be researched a lot before its commenced.

Im not sure about that. Things dont have to be hard (all depends on what is being studied) as long as there are some good studies out there in which its clear what is considered "normal" for comparions to a ME group using their actual proper test results and putting the together to find out what percent are affected and then comparing with what is considered to be normal.

The most important thing is the subject group and how we would define ME people.

Building date bases for tracking patients may be being done but its not helping us right now.. and we have been waiting long enough for things like that when if ME patients organised themselves we could be learning more things about this illness in the meantime.

 

[taniaaust1]

Hi cigana-
I am helping out with HealClick although I don't think I have previously written about it on PR because I don't want there to be a conflict of interest. I just wanted to address your question since I feel strongly about the potential for self-directed research in this illness, especially due to the limited research being done via traditional routes.

Even if we were getting good funding levels I still could see a need for self-directed research due to how ME affects sooo many diferent things, even good funding couldnt cover all the research we need to happen with this.

We are planning to let people upload medical records including 23andMe so that we can try to help look for associations like those that have come up on this thread (like @taniaaust1 's MTHFR example.)

That's great to hear that 23andME results will be able to be uplaoded.

One of the challenges with epidemiology-- especially in ME/CFS-- is making sure that diagnoses are accurate; we ask whether patients were diagnosed by a doctor and plan on adding questionnaires that are used by the top researchers, but it's something important to keep in mind.

Agree. I hope nothing less then the CCC is used. Those being studied and putting in results to learn about ME should at least be able to fit that and no one should be able to submit results to ME research if they arent sure if they fit or not.

A doctor diagnoses (as long as everything else has been ruled out), I personally dont think means as much as their patients knowing themselves exactly what definitions (and having read those definitions) they fit. Too many doctors think ME and CFS are the same thing and some patients confuse the two too.. so it needs to be asked if they actually do meet a checklist of something like CCC and if they dont know, this needs to be shown so they can see if they do or not (and not guess if they may or not just cause a doctor has told them they have "CFS" or "ME").

I think that is the big thing about any study done.. having the same group of patients being studied it becomes useless otherwise.

 

[cigana]

FWIW I think an interesting solution to the issue of trying to avoid fraud without asking patients to give their credit card details is to use a similar system to airbnb, which checks one of your social media memberships (eg. facebook) for sufficient activity.