The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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How do you market a disease to researchers?

Discussion in 'Advocacy Projects' started by Jesse2233, Oct 17, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    In Llewellyn King's interview with Walter Koroshetz, Koroshetz states that the main challenge is getting new researchers interested in contributing to ME/CFS.

    For the sake of conversation, let's aside the fact that there are excellent research grants NIH is currently not funding, and that the amount of funding NIH is contributing to those they are funding is not enough.

    How does one market a disease to researchers?

    Is there anything patients can do to attract more researchers? How do you identify the right researchers? And are there effective pre-existing models for this?

    I would assume one would want to draw in researchers from complementary fields such as immunology, neurology, metabolism, infectious disease, genetics, and endocrinology.

    But in practice how does that work?

    Can one expect to email a researcher whose career is tied up something entirely different and expect them to contribute?

    Does one appeal to the challenge of solving the mystery etiology or ameliorating the immense unattended suffering?

    Is this even a practical question for patients to consider?

    What Jen Brea is doing is likely the best broad based strategy (e.g. raising awareness of the general public). And Ron Davis and Zaher Nahle are great examples of how to draw in researchers from within the scientific community. But what can informed outsiders (with limited energy and resources) do?
     
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  2. Murph

    Murph :)

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    One thing I did recently was to email a bunch of researchers who had published a good paper I read, on a topic that was easily adapted to ME/CFS research.

    I sent what was basically a form letter to each of them. I tried to leverage their vanity, their natural curiosity and their sense that a big prize-winning discovery might be possible, just around the corner.

    My idea was that if you hit an early/mid career researcher you might shape the future of the field. And if you get the type who has their own lab you might get a whole lab interested. It is normally easy to find researcher email addresses. Some of them must have me/cfs, or a family member who does.

    Nevertheless, this is a low cost, low return sort of approach. Most emails won't be read and the ones that are probably won't change many careers. If you email 1000 scientists you might generate perhaps one or two extra papers in a lifetime.

    In the end I decided it was not a good use of my time. A person with excellent computer skills might be able to write a bot that combs pubmed for new papers with certain keywords and delivers a list of relevant email addresses. That would make it quicker. Alternatively, making it a project for a group could reduce the effort required.

    --

    Hi Petra

    Congratulations on your new paper published in PlosOne! I read it and found it fascinating.

    Links between metabolism and immunity are a particular interest to me because I suffer from ME/CFS (chronic fatigue syndrome) a complex disease with immune and metabolic elements.

    As I read your paper I couldn't help wonder if there might be clues for ME/CFS in your work.

    A recent paper published in the Journal of Clinical Insights found metabolism was disturbed in ME/CFS, possibly due to AMPK activation. Meanwhile a new paper in PNAS found curious patterns of cytokine activation in ME/CFS. And a Phase III trial of a monoclonal antibody against b cells is ongoing following studies showing it was effective in curing some patients.

    ME/CFS has been described as the last great disease we know nothing about, but that is changing fast as research starts to pile up.

    Do you think your findings could help fill in the gaps in the understanding of ME/CFS?

    Thanks,Jason
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    I like this approach @Murph. I agree that it might be fairly low yield, but it's low cost, and easy to do and leveraging a group effort and a degree of automation would certainly magnify its impact. Did you hear back from any of the researchers you contacted?

    @mariovitali any thoughts on how through automation this approach could be made more efficient and effective?
     
  4. lnester7

    lnester7 Seven

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    Universities have start up money to set up new reaserchers. Once they start in a field it is hard to change ( since they run on the money given for that particular field).
    1) opening programs for university to start up new rewaerchers on Cfs.
    2) giving seed money to stablish reaserchers: you cannot ask for a grant without a hypothesis ( which takes money to form).
    I have friends reasercher who tried and couldn't becuase of lack of seed money!
     
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  5. mariovitali

    mariovitali Senior Member

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    I have most of the parts for such automation ready, i am not sure whether youa re able to get the email of authors programmaticaly (ie in an automated way). I will have to look at this
     
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  6. Murph

    Murph :)

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    I did not hear back from any of them!
     
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  7. BurnA

    BurnA Senior Member

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    Give them money.
     
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  8. pattismith

    pattismith Senior Member

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    I can see two ways to have more talented researchers involved:

    -pray so that one of them will have his/her son or daughter falling ill with ME/CFS
    -pray that media will make a lot of publicity to the disease so that funding increases

    Okay, maybe prayers will not be enought...:lol:

    Do you have any idea to get that goals by another way than prayers?:whistle:

    Lady Gaga communicated about fibro, is there any known artist with ME/CFS?:thumbdown:

    Maybe we could postulate that some already dead artists could have had it, which lead them to early demise...I think especially about all the ones that were diagnosed with depressive or psychiatric syndromes... Jim Morrison, kurt Cobain, Jimi, Janis, Amy...
    i was just wondering for some time if one could have been concerned by the disease...
     
  9. Joh

    Joh Inactivist

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    I found the point interesting that Zaher made (that is kind of obvious, but I've not really thought about it before) - that there will be hardly any new researchers as long as medical schools/universities don't teach ME. From the doctors and researchers I know in my family, that's true - they've chosen their field of interest while at medical school/university and sticked with it.
    The IOM report stated that less than 1/3 of medical school curricula in the US include ME (and we don't even know what kind of GET/CBT info might be delivered) and less than half of the medical books include ME. Other countries would have much worse numbers. So I guess with bringing new researchers into the field it would be important to start with medical schools, universities, curricula, medical books. But how we could achieve this - good question. Screening Unrest at medical schools sounds like a perfect opportunity we have at the moment (although we'll of course need other efforts to get into curricula and books).

    Also we need of course to interest existing researchers and can't wait for a decade until students have their exams and a hypothesis and can apply for their first research grants.
    In one article that was recently posted on PR (about the first two days of the Stanford Symposium) a researcher said he had read about ME research in a Sanford University magazine and found it so exciting that he reached out and wanted to be part.
    Jen Brea is going to talk at a precision medicine conference shortly.

    I think most effective might be to support existing campaigns or organizations like Solve, OMF, Unrest, Invest in ME (and others) that explicitly work on reaching out to medical students, doctors and researchers. We can mostly change much more with strategic group efforts than as individuals. Still this is a very interesting question.
     
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  10. jstash

    jstash Senior Member

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    I'm coming at this from a slightly different angle due to my background - but is there anything in making a point of speaking to people in the media for more coverage as the starting point?

    More coverage = disease that's talked about more and more understood by the layperson = possibly researchers feeling it's a hotter research area to get into rather than the dumpster fire that it currently is.
     
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  11. NelliePledge

    NelliePledge plodder

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    I think that's one of the aims of Unrest
    Also organisations like ME Association have press contacts Charles Shepherd has mentioned on here a couple of times that he's been speaking with journalists.

    If people with ME have personal/professional contact with journalists then it would be really good to talk to them about ME and ask whether they would do something to persuade their editor and help get the message spread.
     
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  12. Jo Best

    Jo Best Senior Member

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    I think that researchers already involved in the field have a good chance of inspiring interest (hopefully enthusiasm) of their peers and I think of Fane Mensah's experience as a fine example and is best explained in his own words: https://www.antibodygenie.com/2017/08/15/research-project-boosted-scientific-career-phd-student/
    This example (Fane Mensah) also shows the value of the approach taken by these patient organisations:
     
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  13. halcyon

    halcyon Senior Member

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    I've had mixed success contacting researchers directly. Mostly so far I just never get a response.

    One way you can identify potential researchers is by using Stork and looking at the recently awarded grants in areas that you have set up keywords for. I had actually contacted the researcher behind the work discussed in a recent thread back in January because they received an NIH grant to study persistent RNA viral infections. If the enterovirus ME hypothesis is correct, this would be right up their alley. Unfortunately this is one of the researchers I never got a response from.
     
  14. Hip

    Hip Senior Member

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    I think a large factor in attracting researchers to a particular field is whether something excites their intellectual curiosity. As suffering patients, we may think that scientists will be attracted to a field like ME/CFS out of moral duty or out of compassion, in order to help ME/CFS patients. Whilst there may certainly be an element of that, I don't think there is any substitute for intellectual curiosity as the main driver of research, as that's what engages the mind into exploring the territory.

    So the intellectually interesting and challenging aspects of ME/CFS need to be presented. I expect a lot of medical researchers probably know very little about ME/CFS, and just think of this illness as a condition where the main symptom is feeling tired all the time, which makes ME/CFS look like a dull disease to research.

    Whereas for anyone who knows ME/CFS a little better, there are many intriguing facets about it, from the mysteries of delayed post-exertional malaise, to the inverted or chaotic circadian rhythms, to the fact that the majority of ME/CFS patients have markedly reduced susceptibility to catching colds, to the strange loss of the antidepressant effects of exercise, to the host of weird cognitive symptoms, such as the transient inability to be able to recall words and names (anomia), or the amusing miscategorizations of environmental stimuli (like answering the phone when the doorbell rings).

    So I think better characterization of the intriguing details of this illness is important to attract intellectual curiosity and research interest.
     
    Last edited: Oct 18, 2017
  15. Murph

    Murph :)

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    This is a problem of a common kind: figuring out where to intervene when every step in the cycle is broken.

    Everyone can imagine a good cycle of research, with pre-existing knowledge feeding teaching, teaching inspiring clinical interest, diagnosis driving awareness, awareness leading to funding and funding generating knowledge that feeds back into teaching.

    With all the phases in the cycle underperforming, it's like the old saw about lifting yourself up by your bootstraps. It is hard to get any leverage.

    The question is about where best in the broken cycle to try to intervene. Cost of intervention and chance of success both matter. My view is that changing medical syllabuses is too political, slow and difficult. Likewise wedging mec/cfs in under the umbrella of a certain medical speciality.

    I think inspiring researchers is the best step. While most researchers' funding is very tightly controlled in terms of where it can be spent, there are researchers in some well-funded systems with some slack to do what they want. (Consider our friends in Bergen. Neil McGregor of Melbourne followed an even more unexpected path into me/cfs, from dentistry.)

    I agree with @Hip that the kind of people you need are ones who are driven by curiosity. Especially senior ones who can bend strong funding streams to their will.

    The chances of piquing their interest are not bad - especially when they might be taking a run-of-the-mill discovery in a field like oncology or metabolomics and turning it into a revolutionary discovery in me/cfs. Some people are motivated by the chance of being a big fish in a small pond. Others might like the idea that patients actually notice and care about their work.
     
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  16. Jesse2233

    Jesse2233 Senior Member

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    This got me thinking Murph. In additional to recruiting new researchers, encouraging the ones we already have might be good as well. In addition to a genuine expression of gratitude which is intrinsically important, collective expressions of thanks might help further motivate them by making them feel appreciated.

    I wonder, is there a model for a mass thank you from patients to researchers that doesn't clog up their email inbox?

    Maybe something like a PDF that collates many personal thank yous from patients sent to them via one email message. It'd be nice to something like this for prominent researchers such as Fluge / Mella well as lesser known but important researchers like Yasuyoshi Watanabe
     
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  17. Murph

    Murph :)

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    Every sales manager knows that customer retention is far more important and normally a lot cheaper than customer acquisition.
     
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  18. Jesse2233

    Jesse2233 Senior Member

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    Indeed
     
  19. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    GroupCard has been used several times here: See http://forums.phoenixrising.me/index.php?threads/a-group-card-for-dr-speight.44212/ and http://forums.phoenixrising.me/index.php?threads/group-card-to-senator-markey.51828/

    These are the Thank You cards: http://www.groupcard.com/ecards/thank_you
     
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  20. Jenny TipsforME

    Jenny TipsforME Senior Member

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    It would be good to thank existing researchers in a more public way so that the potential new researchers get to hear about it.

    What about an award ceremony nominated by patients? Would probably need to be taken on by one of the charities. Perhaps this already exists and I’ve forgotten? Does Tymes do something similar?

    Could have categories like:
    Most innovative approach to treatment trials
    Most intriguing discovery
    Most promising early career researcher
    Most rigorous research methodology
    Best media interview
    Lifetime achievement
     
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