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Member questions for Dr. Sadie Whittaker, new Chief Scientific Officer of Solve ME/CFS Initiative

Discussion in 'General ME/CFS News' started by Andy, Jul 4, 2018.

  1. Andy

    Andy Senior Member (Voting Rights)

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    Hi all.

    I have the chance for an interview with Dr. Sadie Whittaker at some point, so I wondered if you had any questions that you'd like asked? If you do, let me know in a post below.

    Thanks
    Andy
     
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  2. Andy

    Andy Senior Member (Voting Rights)

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    A recent editorial from Dr Whittaker
    https://solvecfs.org/june-2018-research-1st-reflections-from-dr-whittaker/
     
    Last edited: Jul 4, 2018
  3. Andy

    Andy Senior Member (Voting Rights)

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    Dr Whittaker answering a question on Facebook
    https://www.facebook.com/SolveMECFSInitiative/posts/10155554960477108:0
     
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  4. Melanie

    Melanie Senior Member (Voting Rights)

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    Most patients will meet either the IOM or CCC criteria but there are some that meet the ICC criteria. Unless they are researched as a disease group of ME patients, how can their very severe neurological issues and infections ever be treated? It seems as if they have gone into neurological meltdown with possibly irreversible damage that would demand its own treatment interventions. Their relentless infections may need a different approach than a patient who only meets IOM or CCC. And if not recognized now, when? Once treatment interventions are developed for SEID and ME/CFS patients, that does not guarantee those interventions will work on those with ME. And drug companies tend to have an adversity to developing specialized drugs and treatments for smaller groups of patients. ME patients are almost an orphan disease within the ME/CFS disease spectrum. I wouldn't think any treatments developed for Asperger would really work for Autism and vice versa.

    We don't know for certain if they are really the same diseases (SEID vs ME/CFS vs ME) but could it be they are and are just different types? And like Age-related Macular Degeneration (dry atrophic vs wet neovascular or exudative) can one possibly progress to the other? Over decades I have gone from meeting IOM criteria to CCC. I may be sliding into ICC but it is difficult for me to understand and navigate this criterion.

    Also, how do we educate the healthcare system to our allergies to many medications? I have failed on many medications and even supplements due to them drugging me or causing the side effects listed that most "ordinary" patients do not get. Minocycline has given me vertigo which somewhat subsided but definitely left me with dizziness and unsteadiness as well as 24/7 Tinnitus. (My doctor told me ongoing side effects after stopping the drug only happens to about 1% of patients.) How do we get other state's Departments of Health to educate their doctors on ME/CFS like the NY Dept. of Health has done?
     
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  5. Melanie

    Melanie Senior Member (Voting Rights)

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    We also need to educate the healthcare system that using depression and psychotic drugs to help us sleep is not working. They are not helping us sleep and just pretty much drug us during the day. Knocking someone out is not helping them sleep.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    I visited the SMCI website to remind myself what research SMCI support. I think the website needs some work. The About Us page says
    But if you click through on 'Research Programs' you are taken to a page called 'SMCI Science and Discovery Programme - For Researchers'. It says this:
    There's no following text about what happened in 2013, 2014 and so on. It also gives Zaher Nahle's name as the contact.
    I think, given the expressed desire for the participation of patients in research, it is odd to have a page titled 'For Researchers' when you click through from a 'Research Programs' heading.

    The Patient Resources page is under construction. Which is at least a sign of movement in the right direction but you'd hope it wouldn't stay that way for long.
    The 'About the Disease' page has a picture of a heart symbol held between two hands, with a DNA helix in the middle of the heart. What has that got to do with ME/CFS? What's it trying to tell us - that ME/CFS is a genetically caused heart disease? That we should love and take care of our DNA?

    And it says this
    Which I think is odd, given all the possible things the page could have said that would be more important. Found to help? Really? I think the evidence would be weak. Massage therapy sounds a nice safe thing to do, but I was amazed to find that I was getting 3 day PEM after sessions.

    So, there's not really a question for Dr Sadie Whittaker in all of that, but perhaps she might like to take the opportunity, on behalf of SMCI, to tell us what is happening with the website. Perhaps funding research seems a more important use of funds and effort, but if SMCI wants to be credible, with researchers and with patients, a decent website is a good start and doesn't cost a lot.
     
    Last edited: Jul 4, 2018
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  7. Hutan

    Hutan Moderator Staff Member

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    From Dr Whittaker's editorial
    https://solvecfs.org/june-2018-research-1st-reflections-from-dr-whittaker/

    A question could be
    How is this single global biobank and registry of consolidated data going to work? Do you plan to have just one site in the world where samples are stored? Wouldn't just close collaboration between biobanks and registries be a more achievable aim? Will this planned single global biobank and registry provide coverage of post-Ebola ME/CFS?
     
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  8. Andy

    Andy Senior Member (Voting Rights)

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    Thanks for the questions/suggestions so far.

    Some bio for Dr Whittaker
     
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  9. Adrian

    Adrian Administrator

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    How do we stimulate more research into ME? I see a mix of areas that it would be interesting to have addressed:
    • How do we get more researchers interested in ME?
    • How do we get drug companies interested or at least watching the research?
    • How do we get more funding or what can we do to encourage the generation of high quality research proposals?
     
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  10. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Thanks Dr. Sadie for taking the time to answer our questions. A major problem we face now that will cause problems down the line needs to be acted upon by NIH. Nancy Klimas is ready to begin clinical trials but there is no mechanism in place for her to do so - she just hasn't the money.. I understand she has funding for a pilot trial but beyond that, there is nothing in place. Likewise, the NIH program announcement (PA) for ME/CFS does not allow funding for clinical trials. That’s something that Dr. Koroshetz said WOULD change, but it hasn’t. Getting that PA to specifically allow grant proposals for clinical trials could clear the way for Nancy Klimas, Ampligen, Cortene and others to apply for funding. So Dr. Klimas is ready to start trials and Dr. Koroshetz is sitting on his hands while our lives continue to pass us by.
    What can be done to get NIH to act on this particular issue NOW?? The NIH budget is larger than it's ever been. I think I speak for the majority of ME patients when I say we are so sick of waiting for NIH to take appropriate action. As a speaker said at the recent CFSAC meeting, NIH have dipped their toes in the sea. It's time for them to jump in. That's bringing weird images into my head but you get the gist.
     
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  11. Andy

    Andy Senior Member (Voting Rights)

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    Any more questions from anybody?

    I'm intending to ask her to give a bit of an overview of her background, and ask whether she feels any of her previous experience can be of particular use in her role with Solve.

    I'll also ask if, as someone who is presumably relatively new to the ME field, she feels there are any avenues that aren't currently being followed that could be of use, whether that is in science or any other aspect.
     
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  12. strategist

    strategist Senior Member (Voting Rights)

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    How does ME/CFS compare to other diseases in terms of patient donations to research? Do we donate more or less?
     
  13. Andy

    Andy Senior Member (Voting Rights)

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    I'm not sure she'd know, though obviously I can ask her. Looking at what details we have about her previous work she seems to have a private sector background.
     
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  14. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    What does she think of updated CDC website for Health Practitioners
     
  15. strategist

    strategist Senior Member (Voting Rights)

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    It's an interesting question by itself and possibly of interest to the SMCI which relies on donations.

    If it turns out that we donate more than average, we can include that info in advocacy material to strengthen the message that we really need more government funding.

    If it turns out that we donate less than average, we can say that patients should be able to donate more (factoring in the impact of the illness in any comparisons to other illnesses).
     
  16. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Was it when you moved to the USA that you learned about ME and became interested in working in the field or were you aware of it when you were in the UK? What are your views on the current situation in the UK?
     
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  17. Forbin

    Forbin Senior Member (Voting Rights)

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    Perhaps they have already thought of this, but I wonder if their biobank/patient registry has a mechanism to retrieve samples from patients who are in remission. While the system is obviously set up to acquire samples from patients who are ill, they might want to proactively try to acquire and store samples from patients who are in remission - an arguably more difficult task since remissions are relatively rare and may be confined to a "window of opportunity" of uncertain length.

    I'm just thinking that a lot might be learned by comparing samples (blood, microbiome, etc.) from the same patient, both while ill and in remission. Patient remissions don't adhere to a timetable, so a mechanism like a biobank seems like it would be well suited to capture this potentially important data. It could be as simple as emailing registered patients and saying "Hey, if you find yourself in remission, CONTACT US!"
     
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  18. Trish

    Trish Moderator Staff Member

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    I would like to hear more about your plans for patient involvement. You said:
    Can you tell us more about your plans for this, in particular will you use social media, such as this forum, and will you find a way to involve people with severe ME?
     
  19. Andy

    Andy Senior Member (Voting Rights)

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    Looks like this interview will be recorded w/c 13th August so still time to put questions forward.
     
  20. Trish

    Trish Moderator Staff Member

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    From what I can see looking at the SMCI website it seems the research focus is on finding out more about what is going wrong in ME, and in collating information and samples through data and biobank. This is all great and I wouldn't want any of this to stop.

    But there is another area of research too - treatments. As you are probably aware, there are doctors and patients around the world experimenting with different treatments such as antivirals, antiretrovirals, low dose naltrexone, sodium dochloroacetate, assorted nutritional supplements and herbs and diets such as paleo, low carb and keto.

    Does Solve see itself anytime supporting/funding any of these being properly researched in small clinical trials which if successful could then look to NIH or drug companies to fund large scale trials?
     
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