The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

How do you market a disease to researchers?

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

  1. MandM

    MandM

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    [QUOTE=" 1/3 of medical school curricula in the US include ME .[/QUOTE]

    I agree with Zaher and you. If it's not part of the physician's vocabulary - or worse, *is* as "depression", then the cascade of research is blocked.

    A board member for ME/FM BC was targetting engagement at UBC's med school which has a disproportionate impact on physician training (CME). I have been an advisor to a subcommittee of CME via the Global Association of Medical Education. It might be worth forming a credible global committee to advise medical teaching universities and CME companies.

    Which leads me to a related area - "credibility" - while many people in the ME community are rightly pissed off about misuse of research dollars on exercise therapy, researchers on the outside looking in just see a bunch of researchers getting the shit kicked out of them. I'm not even a researcher and I've had the public shaming experience because I dared say the mind-body healing experience has a credible place in ME research. I don't think ME/CFS is a very easy place to get involved in. I have worked with patient communities with cystic fibrosis, diabetes, COPD, MS etc. And I've never seen a more hostile (vocal subset?) patient community on the social media channels I use (twitter, Facebook).

    While the AIDS activism of the 80s seems to be a model for many: "I will not being neglected", I know a lot about these kinds of shy scientists, and their shy funders and their reputation-obsessed overlords. I don't think ACT UP! style advocacy is a good fit with recruiting researchers.
     
  2. dreampop

    dreampop Senior Member

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    So there is a question, to me at least, as to whether you can even market ME/CFS before a critical mass of research has affected it's credibility with both the general public AND the medical community. The irony, huh? The reasons I think it's "unmarketable" I may write about in another post. I loathe the comparisons to AIDS, because while AIDS carried stigma, things changed relative quickly as people died, and the acceptance of it as a transmissible disease. ACT UP sped up this process, by getting the message out this was serious.

    In any case, people most threatened by AIDS had a lot in common, lived near each other, and while most were affected by the threat, were not actually sick and had time once they were sick to do something. That's a great recipe for protest groups. ME/CFS is disparate, we share little in common, and maybe wouldn't even get along, generally are too sick to protest by the time they know about it. A handful of people once a year is never gonna change the world, I'm sorry to say. It helps, though.

    So, if you can't market it? What can you do? There is a I think the possibility of legal approach, by which you sue the NIH in a federal court under the 14th amendment. It sounds crazy but I think there's an argument for it at least. I could write that in another post as well. It would be just be such a bitch.

    Also, though, instead of marketing ME/CFS, you can market it's complements. Watching Ron Davis' at the symposium, he just oozed cool technology that could change medicine. That's likely to be much more appealing than ME/CFS. I think he might know that himself. Ideally, you would like to find a philanthropist, ala musk, gates who is interested in tech that benefits society. That's a hard sell, and I don't know about the patent situation, but it might be doable just because the technology was so interesting.
     
    Last edited: Nov 16, 2017
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  3. dreampop

    dreampop Senior Member

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    The stuff about researchers being scared because of toxic communities, etc... is totally bogus at least in the U.S. They are scared of their PERSONAL credibility (i.e. being outcasted for studying me/cfs) and money.
     
  4. Jesse2233

    Jesse2233 Senior Member

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    Southern California
    Now there's a thought. How might this work and are there any precedents?
     
  5. Kati

    Kati Patient in training

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    I agree with Zaher and you. If it's not part of the physician's vocabulary - or worse, *is* as "depression", then the cascade of research is blocked.

    A board member for ME/FM BC was targetting engagement at UBC's med school which has a disproportionate impact on physician training (CME). I have been an advisor to a subcommittee of CME via the Global Association of Medical Education. It might be worth forming a credible global committee to advise medical teaching universities and CME companies.

    Which leads me to a related area - "credibility" - while many people in the ME community are rightly pissed off about misuse of research dollars on exercise therapy, researchers on the outside looking in just see a bunch of researchers getting the shit kicked out of them. I'm not even a researcher and I've had the public shaming experience because I dared say the mind-body healing experience has a credible place in ME research. I don't think ME/CFS is a very easy place to get involved in. I have worked with patient communities with cystic fibrosis, diabetes, COPD, MS etc. And I've never seen a more hostile (vocal subset?) patient community on the social media channels I use (twitter, Facebook).

    While the AIDS activism of the 80s seems to be a model for many: "I will not being neglected", I know a lot about these kinds of shy scientists, and their shy funders and their reputation-obsessed overlords. I don't think ACT UP! style advocacy is a good fit with recruiting researchers.[/QUOTE]
    Respectfully, the mind-body connection is the very reason why we are here in 2017, with no approved drugs and at the bottom list of the priorities of the medical authorities.

    Promoting body/ mind connection means that the funding bodies do not give money for solid research but instead promote wellness, self-management, meditation and ‘being happy with what you got’. Right there, it saves the government millions, and lead nowhere.

    There is no mind/body connection when you fall suddenly ill with a viral illness and never recover despite trying everything. There is biology and biological process that has yet to be uncovered. This deserve competent research and appropriate medical treatments and access to treatments which gives patients a chance to get better.

    Should you have found yourself cured by mindfullness you actually do not have ME. I hope you are not promoting mind/ body connection in med schools.
     
    jstefl likes this.
  6. MandM

    MandM

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    I don't disagree - which is why I say "rightfully pissed " about the allocation of funds. But the tone of dialogue from *outside* looking in, a non-ME researcher would see the high profile, vocal, UK researcher(s) complaining of hostility. I am 100% for more biomedical funding. I am 100% in agreement that lifestyle fixes are an easy out and we don't need more of that. Biomedical solutions are expensive and necessary.

    I don't think mindfulness is a cure. I am not doing CME for anything touching ME/CFS as I am not qualified. But the local physicians might as they are credible research physicians. Those same doctors include bio-psycho-social treatments, as they also fight for Rituximab trials and Ampligen etc. While there's a clear subset of patients who do have what I think I've heard them call "true ME" - the polio-type onset (Dr. Hyde criteria) - among the people diagnosed with the Canadian Criteria with ME/CFS, you'll find a bigger bucket. There is evidence that there is a mind/body connection in stress & reactivity levels, neurotransmitter imbalance, gut/mind connection/dysregulation, dysfunction of the HPA etc. Where the mind-body regulation is messed up by the sickness. And those are all legitimate areas where research has been done that would fall into maligned bio-psycho-social.
     
  7. MandM

    MandM

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    Fair enough. I think being outcast for studying ME/CFS and money are bigger issues. And I'm contemplating this idea of suing the NIH. Is that something that's been done?
     
  8. Kati

    Kati Patient in training

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    When you mention mind-body connection, you are basically saying that the mind ( our thoughts and emotions) are causing disease. It is basically a nice way to say “it’s psychosomatic”. Too many physicians are keen to go that route, and profit from interventions based on the psyche, including biofeedback or mindfullness for instance, or group therapy. These interventions are not A-evidence and not proven to alter the course of the illness, or any illnesses at all.

    The brain-body connection is undeniable and many illnesses fit in that category, for instance multiple sclerosis or Parkinson’s disease. It has nothing to do with the mind, thoughts or emotions. It is a biological process. The above mentioned diseases make no mention of brain body diseases, they are simply diseases.

    Words matter. Extreme caution in using the right message especially when interacting with physicians or medical bodies.
     
  9. dreampop

    dreampop Senior Member

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    Disclaimer: I am not a lawyer.

    Precedent? Yes and no. I should state many of the precedents come from employment practices, by far the most active discrimination subset, and I’m unsure how they would translate to our unique situation.

    Basically, the government or institutions funded by the government are subject to the equal protection clause, via the rehab act, – and so can’t discriminate against race, sex, age and/or disability. This is generally used for employment, disabled access and special help programs. However, I think it could be argued that it extends to the NIH, and prohibits them from discriminating amongst diseases. It’s an argument, not an absolute. Now, this isn’t saying all diseases need to be funded the same, but they need to be regarded equally. The NIH has further incentive to do this in its mission (although this would matter less). And in fact – they have legislation consistent with this premise. AIDS and Women’s disease have unique departments meant to protect them from falling to the wayside, AIDS has special appropriations that can only be used on AIDS research (but these come from congress).

    So, there is an acknowledgement that (1) some disabilities can be discriminated amongst all disabilities, and (2) that this is true within the NIH, and (3) that preventive measures can be applied (government intervention). There is a great deal more to each of these three steps, and case history to specific to them, that would need to be fleshed out.

    ME/CFS also has the distinction of affecting mostly women, and being grossly mishandled as a result. I see this more as an in-addition to its core discrimination of false MUPS/hysteria baggage.

    Now, the question is, has the NIH discriminated against ME/CFS? This has to be to a significant degree, and it must allow a reasonable flexibility for the NIH to move funds around for emerging health threats, promising research etc. There is a lot to get through here but some questions that you would ask are; Did they NIH know the disease impact, if not did they make an effort to know the disease impact? For how long did they know? What steps did they take to reconcile disease impact with grant applications? Is there any evidence of bias against ME/CFS within the NIH personnel? Why was Shorter invited to speak? What steps did they take to eliminate bias in the grant application process and within the NIH? When did they ask congress for specific funding or help in annual requisitions? Why did they not? Without getting into a 20 page write-up here, one might wonder what the answer to these questions are.

    All of those questions are answered in the backdrop of disparate impact. That is to say – when a process disproportionately affects a minority group. The supreme court has continued to accept disparate impact arguments as discrimination because it can be such a tricky thing to prove. If 100 black candidates apply for 10 jobs, but the 10 white candidates who applied get the jobs – that looks a little funky, no? Sure, the employer never said anything racist around town, but the discrimination was implicit. So, yes, NIH needs freedom to move funds around. And, yes, every disease should not get the same amount of money. But, if for 20 years straight, ME/CFS is in the bottom 1 or 2 diseases funded, that’s a little strange? It’s even stranger if you know how many people have it and how severe it is.

    This concept is not a panacea, though, for example, courts sort of rank minority status with race being the most serious. Discrimination against “CFS/ME” would not be as serious. The thing is, the disparate impact of cfs funding/disability burden is sort of exceptional even for disparate impact cases. We’re talking about something falling 4-5 standard deviations away from where it should be every year for 20 years. So, while the rank may not be a strong, the impact is. Another thing that matters here is whether the courts see a specific practice as causing the discrepancy, and, if not, intent.

    Those two points are key to a disparate impact case, and the biggest weakness for us. As I mentioned, intent is very difficult to prove. And the specific process – is the grant application process. So, either you argue neglect as intent, also very difficult, or you go after how the NIH works as a system – a monolithic task.

    Most disparate impact claims relate to employment via the Civil Rights Act, or housing via the Fair Housing Act. So, there is often practice that excludes a minority. I really don’t see one in our situation. There is also something called a neutral rule. When a neutral practice, say grant applications, disproportionally effects a minority, the employer must prove the practice is necessary. Again, it’s after the monolithic grant application process. I’m unaware of willful neglect being used to support a disparate impact case, but it seems a possibility. There is also the possibility a neglect case may be more effective, but I haven’t researched them enough to know.

    We have already heard, Collins and Koroshwetz say the NIH didn’t get enough grant proposals, that ME/CFS had to stay there because no one wanted to research it. Of all the arguments the NIH has, the worst, the most self-incriminating is “we didn’t get enough quality grant proposals”. This is cringe-worthy stuff, and they have incidentally swept it aside in the matter of a few months. Very smart people really like to fall back on some version of this stupid defense. It’s extremely common, but it’s often phrased in a different way – “we didn’t get enough quality African American applicants”. We know the courts have rejected this argument for 50 years with regards to race. There is no precedent for its rejection in research grant proposals, but no one has been as grossly discriminated in that regards as ME/CFS.
     
  10. dreampop

    dreampop Senior Member

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    I had draft saved about why a lawsuit would be advantageous poltically as well, but I don't know how to find it.
     
    Last edited: Nov 20, 2017
    ballard likes this.
  11. concepcion

    concepcion Senior Member

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    I agree with Zaher and you. If it's not part of the physician's vocabulary - or worse, *is* as "depression", then the cascade of research is blocked.

    A board member for ME/FM BC was targetting engagement at UBC's med school which has a disproportionate impact on physician training (CME). I have been an advisor to a subcommittee of CME via the Global Association of Medical Education. It might be worth forming a credible global committee to advise medical teaching universities and CME companies.

    Which leads me to a related area - "credibility" - while many people in the ME community are rightly pissed off about misuse of research dollars on exercise therapy, researchers on the outside looking in just see a bunch of researchers getting the shit kicked out of them. I'm not even a researcher and I've had the public shaming experience because I dared say the mind-body healing experience has a credible place in ME research. I don't think ME/CFS is a very easy place to get involved in. I have worked with patient communities with cystic fibrosis, diabetes, COPD, MS etc. And I've never seen a more hostile (vocal subset?) patient community on the social media channels I use (twitter, Facebook).

    While the AIDS activism of the 80s seems to be a model for many: "I will not being neglected", I know a lot about these kinds of shy scientists, and their shy funders and their reputation-obsessed overlords. I don't think ACT UP! style advocacy is a good fit with recruiting researchers.[/QUOTE]

    Hi MandM. I have sent you a PM.
     

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