Trial By Error: What Now?

By David Tuller, DrPh

Like many or most, I don’t know what I’m supposed to be doing right now. I am “sheltering at home” in San Francisco, following the news, making way too many cups of coffee, chatting much more on the phone than usual, checking in with my 90-year-old mom in Manhattan, watching movies I’m not interested in watching, taking walks with Harold (the mutt) around the neighborhood while keeping several feet away from passersby. It’s like living in a Twilight Zone episode, for those old enough to remember that. (Or like living in a Black Mirror episode, for others.)

So…I had intended to be in England this month. My plan was to attend last week’s CMRC conference, conduct some interviews, post multiple blogs, meet with members of Parliament, see some fringe theater (American spelling intentional) in London, hang out with friends, and give a couple of presentations. Oh, and Berkeley had scheduled April as a crowdfunding month, so I was planning once again to seek support for my academic position at the Center for Global Public Health.

Well, things are obviously a bit different now.

I’m taking this week to kind of adjust to our new reality and figure out, well, whatever I can figure out about how to move forward. People who had ME or CFS (or some variant thereof) before the coronavirus epidemic still have ME, CFS or some variant. This situation impacts them, as it does everyone, but at times undoubtedly in different ways; in fact, many people with ME are far more used to being home-bound than most of the population. Patients and scientists have also raised concerns that this wave of viral disease will be followed by a secondary wave of ME-type illnesses triggered by the initial infection.

These are among the issues I will try to look at in the upcoming weeks (or perhaps months) of home sheltering. I also assume more low-quality research will be published even during this crisis. And certainly there is lots of current and past low-quality research that deserves more attention. I also have interviews I’ve done in the past few years that I’ve never had the time to write up. I’m not too worried about finding enough to blog about.

As for crowdfunding…well, Berkeley is planning to run a truncated, low-profile campaign starting in early April, since many campus groups scheduled to participate are in need of current support. The university will run a more full-scale campaign in the fall once the crisis has (hopefully) abated. Since I crowdfund for “Trial By Error” on Berkeley’s platform alongside other projects, I will follow that schedule. I’ll have more information about this in the coming weeks.

{ 6 comments… add one }
  • Wendy Boutilier 18 March 2020, 4:09 pm

    David – those of us with ME are accustomed to isolation. Don’t put yourself in a position that may jeopardize your health. There’s not much that can be done at this point and it’s not going to be resolved easily. The interviews sound interesting and we can learn from them.

  • Denise 18 March 2020, 4:37 pm

    So glad to hear you will still be doing the crowdfunding! (Wish you were fully financially supported in other ways though.)
    Stay as well as possible!
    I look forward to your posts.

  • Noreen Murphy 18 March 2020, 8:40 pm

    David, the most important thing is to take care of yourself to ensure as much as is possible that you don’t contract CoVid19.
    Yes, we in the M.E. world are masters at isolation. I live in our bedroom! But that wasn’t always the case. I was younger, full of energy, worked, would dance until I dropped (one of my favourite things to do), took care of our children together with hubby, enjoyed life.
    What an ending then to end up like this – useless, a vegetable, a burden – with 2 young children at the age of 27.
    Never entered my head that I’d be in isolation, lose my job, lose my friends. But thankfully not my family!
    Now 60 and I suppose I see more danger and worry more about others. I asked my carer, who’s older than me, to stop coming in case I have coronavirus & passed it on to her. She refused and is great, wears gloves & mask. At least, I’m not totally alone.

    My point is none of us ever thought we’d end up in this situation. So, others can learn from this. I really think there will be some sort of M.E.-like illness after this. On the positive side, maybe more research will be done for us if that happens (not that I wish this on anybody!). We can but hope for more research.

    So please don’t worry about getting more stuff done. When something like this hits, everybody understands many things ease off or stop altogether. The most important thing is for you to stay well, my friend.
    Hopefully that way one day I can meet you again in Belfast with Joan McP or maybe in Dublin ).
    Best wishes from Ireland PACMAN!

  • Barb 19 March 2020, 7:12 am

    Hi everyone. I have drafted a suggested awareness sheet which I have shared with those Tuller acolytes in Suffolk! See what you think. Comments etc welcome.
    David Tuller ‘Pacebuster’

    Trial By Error: What Now?
    18 March 2020

    By David Tuller, DrPh

    ‘Like many or most, I don’t know what I’m supposed to be doing right now. I am “sheltering at home” in San Francisco, following the news, making way too many cups of coffee, chatting much more on the phone than usual, checking in with my 90-year-old mom in Manhattan, watching movies I’m not interested in watching, taking walks with Harold (the mutt) around the neighborhood while keeping several feet away from passersby. It’s like living in a Twilight Zone episode, for those old enough to remember that. (Or like living in a Black Mirror episode, for others.)’
    https://www.virology.ws/2020/03/18/trial-by-error-what-now/

    Advance Notice : April 2020 Annual Berkeley Crowd Funding

    ‘As for crowdfunding…well, Berkeley is planning to run a truncated, low-profile campaign starting in early April, since many campus groups scheduled to participate are in need of current support. The university will run a more full-scale campaign in the fall once the crisis has (hopefully) abated. Since I crowdfund for “Trial By Error” on Berkeley’s platform alongside other projects, I will follow that schedule.’

    Those with ME are accustomed to isolation.

    What can WE do?

    Help David help us!

    Here in Suffolk UK, we are suggesting
    an ‘ME isolation de clutter and sell fundraising on line event’.

    lhttp://nandsme.blogspot.com/p/homepage.html

    Have you some clutter you would welcome shifting to raise money to help David’s April Berkeley Public Health funding event?

  • bks 19 March 2020, 11:38 am

    Where the f.ck is Fauci?

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