Inkwell: Authors and Artists

    


yep. MCS, fibromyalgia, severe mold sensitivity, etc. -- not all that
interesting to many who would imagine themselves sympathetic to the
disabled. 
  

    
for sure --- there's that thing i call being 'the happy crip" i.e be
charming/charismatic/appealing --- and have energy/capacity to be an
'artist/hacker/cowboy' i.e. act like something out of wired magazine
circa 1994. have so often felt like a rat who has fallen into a
toilet who is swimming madly to keep her whiskers above water and
maybe not drown --- and yes, i did suffer from ME/CFs for 3-4 yrs in
the 90s. what is fair to demand of ppl who are barely getting by?

others far more eloquent than i have advocated for -care- as opposed
to dx/treat/discharge --- frinstance victoria sweet's 'god's hotel'
(cannot recomend highly enough, about turning a long time place for
long term healing/ laguna honda into medicalized disaster which
recently was in danger of losing its medicare certification)

https://www.nytimes.com/2012/05/29/health/29zuger.html

in that patreon creator support group, am struck with how those
folks could not afford/have no access to 'clean healthy food'; could
not afford basic supplements (such as coq10, good for cardiovascular
health in general); all kinds of wellness + supportive
care/complementary medicine modalities such as acupuncture, either
not avail or affordable. and none of them know much about any of
these possibilities.

one of the members of this group lives in the family home in the
pnw. pretty clear after getting to know him that the nasty w/w
carpeting need to be replaced and mold remediation done. the family
cant afford this, what with only one person being well enough to
work.

in general, i would say the disabled/chronically ill are far less
appealing and maybe less fixable than the -diseased-. 

a friend who has way outlived his leukemia dx and was the recipient
of good conventional care --- knew nothing about the cancer
industrial complex, such as the folks at the esteemed breast cancer
action go on about.


would also recommend sandra steingraber's 'living downstream", an
ecologist looks at cancer.


https://www.dacapopress.com/titles/sandra-steingraber/living-downstream/978030
6818974/

tangential i know --- but how can any discussion of health ignore
the polluted planet we are living on? there's neither an app nor a
pill for that.

john perry barlow once termed me 'dyspeptic'. have always gladly
owned that...


 
  

    
I think physicians inherently have to work from templates, a sense
of what generally holds true. This is why it's so important to
include the patient in the therapeutic discussion - a physician
knows what's generally true about health and disease, but you know
best the particularities of your own body and health. Putting those
two perspectives together collaboratively could be powerful. And it
could also help understand conditions that are not well documented
or understood.
  

    
yet dont we want our clinicians to know stuff we dont?

examples from another era:

- in the 1970s a board-certified pediatrician began to observe that
he often saw kids w/acute asthma a day or two after the lawncare
service showed up. thus began his understanding of what he called
'clinical ecology'; yes he helped me but as important, i learned so
much from him. he's dead of course and 'clinical ecology' as a term
and as a dsicipline seems to have been fallen out of favor.

- a dentist i saw (now dead) began to observe ms-like symptoms in
himself in the 1980s --- did his research and realized he had to
stop using mercury-amalgams and switched up everything in his
practice to be less toxic. again, i have learned so much from that
practice, now carried on with the least-toxic treatment philosophy.

by contrast, my observation is that naturopaths suffer from the same
scientism/physics envy of mainstream practitioners, wanting to throw
lots of tests at you and having no clinical intuition. or there are
the extreme woo ones, who weirdly can be just as template-driven ---
only their remedies are, um, non-mainstream

if i am obliged to spend 3/4 of an appointment educating a
practitioner about mold sensitivity/ chemical sensitivity/etc why am
i even there?

a new primary-care person cant be found, post c19, much less one who
has more than 15 minutes allotted.

have become increasingly skeptical over time about support groups
being thrown at ppl in lieu of decent care. note i used the term
'care', not 'treatment'.
  

    
Our clinicians come to know more than us by listening to us and to
their other patients. If we don't communicate what we know about
ourselves they're not going to learn either about the things that
affect us or about the particular effects on us.
  

    
my point is that
a) these days they seldom have time
b) newer practitioners -might- be willing to listen, but there can
be so much they know nothing about that...
  

    
Question for Susannah: what impact did Covid have on the patient-led
healthcare movement?
  

    
I'm not very well educated on medicine in general, but I am a serious
supporter of open source problem solving performed by groups of
focused individuals.

Going back to the start of this topic, I'd like to add the Freedom
House Ambulance Service.  It was founded in the 1960s by black people
living in the economically poor Hill District neighborhood of
Pittsburgh.  Emergency transport to the hospital at the time was a
family member drives you (if you have enough money to own a car), by
the police in a paddy wagon, or by a funeral home, all without any
sort of medical care during transport.

Freedom House staff went through a 32-week paramedic course (the first
outside of the military?) and learned how to "get someone to the ER"
as we say today.

They also changed first response.  Or perhaps created first response?

Really good 99PI podcast, where I learned about Freedom House 15 years
after moving to Pittsburgh:
<https://99percentinvisible.org/episode/freedom-house-ambulance-service/>

ob wiki page: <https://en.wikipedia.org/wiki/Freedom_House_Ambulance_Service>
  

    
how does rebel health fit in with abominations in u.s. healthcare
such as the cigna productiviry dashboard:

https://www.propublica.org/article/cigna-medical-director-doctor-patient-preap
proval-denials-insurance?utm_campaign=propublica-sprout&utm_content=1714074308
&utm_medium=social&utm_source=facebook,threads,twitter
  

    
Thanks for all the discussion. I've been reading and learning along
with you these past few days.

Re how Covid affected the patient-led revolution (thanks <jonl> for
the question): it was yet another example of an emerging challenge
that at first left patients out of the scientific discussions. 

But this time, patients gathered online, peer to peer, and began
gathering data about the symptoms they were experiencing that did
not fit the mainstream clinical description of a mainly respiratory
illness that would be "over" in two weeks. People were experiencing
a much wider range of symptoms and for months. Patients themselves
named Long Covid and one group - the Patient-Led Research
Collaborative - fielded an international survey that got the
attention of medical and scientific authorities.

Here's their site:
https://patientresearchcovid19.com

One milestone that was recently reached: A scientific journal
article written primarily by patients about their health condition
has been downloaded over a million times. 

Credit should be given not only to the patients, but also to the
scientific community for recognizing the worthiness of their work.

Here's a link to the article itself:
https://www.nature.com/articles/s41579-022-00846-2

Another product of the Patient-Led Research Collaborative is a set
of scorecards developed in partnership with the Council of Medical
Specialty Societies. The scorecards address dimensions of meaningful
patient engagement in the research process across 5 areas:

- Research Organization Readiness
- Integration Into Research Process
- Patient/Partner Governance
- Patient Burden
- Patient Group Readiness

See:
https://cmss.org/patient-led-research-integration/ 

I should note that the Long Covid advocates acknowledge their debt
to the disability justice movement and to the ME/CFS community for
breaking the paths that they now walk on. They also cite the work
that ACT UP did as inspiration for their own activism. 

Covid had other effects on the patient-led revolution, but Long
Covid activism is the most prominent example.
  

    
Thanks <jet> for adding the Freedom House Ambulance Service to the
list! 
  

    
ACT UP was so important in so many ways...
  

    
Yes, ACT UP was also the model that the National Breast Cancer
Coalition looked to when starting their work to increase funding for
research and to demand (and win) seats at the scientific
decision-making table for patients, survivors, and caregivers. I
tell that story in my book as an example of how Seekers, Networkers,
Solvers, and Champions can work together in creative ways to change
the landscape of research.

For anyone who wants to learn more about ACT UP and other
patient-led advocacy in that era, I recommend:

Impure Science: AIDS, Activism, and the Politics of Knowledge, by
Steven Epstein
https://www.ucpress.edu/book/9780520214453/impure-science
  

    
I was going to post something about the active and often rich
patient communities I've seen on Reddit. I searched for "patient led
movement on reddit," and at the top of the search results I found an
IAmA discussion by Susannah from a month ago:
<https://www.reddit.com/r/IAmA/comments/1bp64ln/i_am_susannah_fox_i_wrote_a_fie
ld_guide_to_the/>

Susannah, what do you think of the patient discussions on Reddit.
Did you learn anything new from doing the IAmA?
  

    
Reddit is an extraordinary community and resource. I cite one study
in my book of r/STD (people can get quick and accurate advice about
sexually transmitted infections) and I recently saw another study of
how Redditors trade advice about "trip killers" (what to do when a
psychedelic trip goes bad - again, clinical reviewers found that the
advice being given was quite good. Doses were off, but the
essentials are fine).

The AMA was rollicking! I knew to take it all with good humor and
was not surprised to see the visceral anger that many people harbor
when the topic of health care comes up. It's a theme at most of my
public events, too. People are very frustrated about the limited
access we have to primary care, to behavioral health, and very angry
about the financial toxicity of our systems. My research and book
focus on the treatment and device innovation revolution but there
are quite a few people who are mad that I'm not calling for a REAL
revolution, like with pitchforks. That's a different book and a
different - needed - conversation.
  

    
Here's the British Medical Journal study:
https://emj.bmj.com/content/41/2/112

And here's my write-up (thanks to a friend I got a free PDF):
https://susannahfox.com/2024/03/15/wow-how-dr-reddit/ 
  

    
took a look at various reddits on mcs --- as i would have predicted,
scattered/distributed/no real useful info but lots of ppl tearing
their hair at trying to find remedies/palliatives/practitioners/sfae
housing/how to live on this poisoned planet.

and as usual there is always One Guy who posts the latest study
saying MCS is the fanciful province of neurotic women (which, i was
glad to see, got shot down right away).

funny, when gulf war syndrome was in the news, we mcs folks just
thot 'yep, this is just a peculiarly location-specific instance of
mcs --- including certain wacko symptoms such as glare sensitivity'.
but of course  no one listened to us...

my understanding is that there has been NO research on MCS since the
early 90s; not sure why this played out differently with ME/CFS and
long covid --- but am glad it has.
  

    
Not sure what various subreddits you looked at, but this is the one
for MCS: <https://www.reddit.com/r/ChemicalSensitivities/>,
including a link to this book: <https://neilnathanmd.com/about-me/>
and a post asking for questions for an interview with a physician
who specializes in MCS
<https://www.reddit.com/r/ChemicalSensitivities/comments/1censtj/i_will_be_inte
rviewing_martin_pall_phd/>. 

I suspect there's other useful info there but yes, in patient
communities you often have posts from folks trying to get a handle
on their experience.

One problem with MCS is that it's pretty broad, it includes a lot of
potential issues that may or may not be related, and the medical
community doesn't recognize it as a clearly defined medical
condition - it could possibly be many things rather than one thing.
But I think this is just the kind of issue where patient discussions
can be helpful.
  

    
yeah, it's kinda like i said from the beginning of this discussion
--- ailments such as mcs or tbi --- because our disease expression +
etiology are all so different --- dont lend themselves well to this
peering model.
  

    
Are there any activist patient communities working on issues of
Prior Authorization? On collaborative ways to "spend" wisely on
services in any/all health care systems? Beyond bean counting but
looking at other indicators? 
  

    
Today is the last day of our formally-scheduled "Rebel Health"
discussion, but it's definitely okay for Susannah and others to
continue posting to this topic. Thanks so much to Susannah and all
others who joined the conversation! 
  

    
<choco> I do not know of a patient org working on issues of Prior
Authorization, but I'll keep an eye out for such a group and report
back if I see anything along those lines.

<jonl> thanks for inviting me! If anyone is interested in continuing
the discussion, here's a link to my blog:

https://susannahfox.com/writing/

Or please come see me at an upcoming event:

https://susannahfox.com/upcoming-events/