
Online activists are silencing us, scientists say - glassworm
https://www.reuters.com/investigates/special-report/science-socialmedia/
======
nateberkopec
Over the next 20 or so years, expect a lot of syndromes/conditions to be
reclassified, as Michael Sharpe puts in the article, as "biological
condition[s] that can be perpetuated by social and psychological factors.".

I struggled with RSI for a couple of years until I read John Sarno's "The
Mind-Body Connection" on the recommendation of someone from HN. Sarno's thesis
is that many chronic pain conditions (those without a clear physical
mechanism, such as RSI or chronic back pain) are psychosomatic.

A lot of people struggle with this idea, and take it, as they did in the
article, as "my pain isn't real". Sarno's book very clearly lays out that the
pain _is real_ , it's just caused by processes in your brain, not the rest of
your body.

Societally it's all very strange. We accept a "mind-body" connection for
certain types of disorders, but, not for others. Anxiety sufferers can fool
themselves into thinking they're having a heart attack and hyperventilate. Why
is it crazy or anti-scientific to think that the same can cause other
symptoms? We've searched for decades for body-based mechanisms for these
chronic pain conditions, why not consider causes in the brain?

~~~
mcv
> those without a clear physical mechanism, such as RSI or chronic back pain

But RSI has a clear physical mechanism. I don't know as much about chronic
back pain, but considering how much physical stuff there is in our back, I'd
assume it's similar.

Or does "physical mechanism" mean something other than it seems to mean?

~~~
pjc50
In practical terms, "physical mechanism" means something a GP can see or test
for, rather than relying on asking the patient whether it hurts.

~~~
ryukafalz
That’s an ever-changing category, though, as medical technology improves. Bone
fractures would have been more difficult to observe directly before the
invention of x-ray machines, but that doesn’t change the underlying physical
condition.

------
mc32
This is sad. Unfortunately we have some people who put their beliefs and
politics above science and will actively act against investigation only
because a line of inquiry could result in evidence against their view.

It comes from both the left and right depending on the topic. It’s not simply
dissent it also is about pressuring institutions to not fund certain areas of
investigation which is a very detrimental consequence.

I sure hope we grow out of this phase, or another society like China or Japan
avoid this fate so studies can go on without interference [obviously they’ll
have their own blinders but we can at least be complementary]

~~~
onion2k
_Unfortunately we have some people who put their beliefs and politics above
science and will actively act against investigation only because a line of
inquiry could result in evidence against their view._

You say that's people putting beliefs and politics above science, but while
that's a rational thing to suggest there are two problems with it.

Firstly, _a lot_ of issues don't _and can 't_ have any scientific rationale
behind them. They're moral judgements. For example, if you want to go looking
for scientific evidence for why the death penalty is a terrible idea you won't
find any. You'll only find ethical and moral rhetoric about why killing
innocent people by mistake is bad, or why the economics of keeping people in
prison for decades when you could just kill them is irrational. Science has
nothing to say. Science doesn't judge.

Secondly, people don't always believe evidence even if it's there. For
example, if you take a random sample of teams and find the ones that make the
best decisions are more diverse[1], some people will demand "positive
discrimination" is a terrible idea and a meritocratic system must be better
_even in the face of the evidence_ or they'll just argue that the evidence is
plain wrong. How do you persuade those people to change their minds?

[1] [https://www.forbes.com/sites/eriklarson/2017/09/21/new-
resea...](https://www.forbes.com/sites/eriklarson/2017/09/21/new-research-
diversity-inclusion-better-decision-making-at-work/)

~~~
dTal
You know, I think science is a lot more capable of converting "is" into
"ought" than it is commonly given credit for. I think there's room for a kind
of "moral pragmatism". After all, our morals all came from _somewhere_ \- some
type of reasoning drove their creation, be it conscious or evolutionary.
There's a rock bottom, and science can expose contradictions between our core
axiomatic beliefs, and our more shallow cached beliefs.

As an example, I'll run through a sample "scientifically pragmatic" argument
against the death penalty: The death penalty is a terrible idea because it
fails a cost benefit analysis. The benefit is a deterence to commit certain
types crime, and a cost savings compared to life imprisonment. These are
measurably small (research has shown that severity of a penalty has a
nonlinear relationship with deterrent effect). The cost is the violation of a
moral imperative not to kill. A society with the death penalty has made a
conscious decision to compromise a moral imperative. This weakens the
authority of moral imperatives, particularly the one against killing. The
purpose of such moral imperatives is to promote a more civil, less violent
society, because such societies enjoy an evolutionary advantage, hence their
evolution in the first place.

How the argument proceeds from this point depends on core axioms - whether one
values happiness or survival more, for instance. But the point is that it's
possible to logically break down what appear to be moral questions into purely
pragmatic ones, in service of deeper axioms.

The problem with this isn't that it's ineffective - it's that it's
complicated, error prone, and relies heavily on a correct accounting of
second-order effects and beyond. Science is hard - you need research and
facts. Moral judgement is easy - you just say what pops into your head. As
such, people mistrust the very idea that morals _could_ be calculable, because
it removes their agency. If someone has a strong, irrational feeling that
Billy Murderer has it coming and should fry for what he did to those kids, my
above argument (fleshed out properly to appeal to their core values, provided
that's possible) will not convince them that it's a bad idea in the long run,
no matter how scientific or testable it is. So they say things like "science
has nothing to say". In fact, it does - we just don't want to listen.

~~~
twentythree
> cost savings compared to life imprisonment

Minor nitpick: it's actually more expensive to execute someone than to
imprison them for life, mostly because of the increased legal costs.

~~~
prepend
But isn’t that a cost that could be eliminated with efficiency. It seems the
legal costs are a result of the moral differences of population segments.

If this different went away and everyone had the same morality, the legal
costs would be really low.

------
alexandercrohde
I'm not seeing anybody else suggest what seems to me to be the obvious
solution: opt out of twitter (which seems like a self-abuse platform) and
filter your email.

Part of why communication works is because we _can 't_ hear everybody's
opinion on everything. People earn the right to our ear through networking and
earning our company. Twitter undoing this is not progress.

~~~
drm237
When people call your place of business and complain to your boss about your
methods and mental state, when they lobby the government to open
investigations into your research under the accusation of child abuse, and
when they use every available method to discredit your life's work, I don't
think that simply opting-out of Twitter is likely to make a meaningful
difference unfortunately.

~~~
sosodev
What are they going to call and complain about if you don't have a social
media account for them to dig through?

~~~
skywhopper
If you didn’t read the article, these activists are digging through research
papers, finding the researchers’ contact info, and harassing them directly. On
Twitter when they are on Twitter, but also on the phone and through the mail,
and via their employers. This has nothing to do with whether or not the
researchers themselves are on Twitter. The mob that’s harassing them uses
social media to organize and recruit.

~~~
sosodev
I did read the article. I guess I should have phrased it differently. The
employers of these researchers already know what they're researching. They
understood the risks involved so what would it matter if somebody calls in?

If the researcher removes themselves from social media they're insulated from
the outrage in multiple layers. They don't see it, and they're not leaving any
of their personal actions behind to be complained about.

------
subcosmos
I can understand why so many chronic fatigue patients are reacting this way.
My doctor once told me that during his medical training, he was taught that
people claiming to be suffering from this are bonkers and must be treated as
if they are psychotic.

Nowadays, the evidence is stacking up that there are metabolic, viral, and
neurological factors involved, and while all of these can effect alertness,
they are not ever dealt with via willpower.

The patients who have been royally insulted are the ones likely reacting this
way. Whether or not the physician or scientist on the receiving end is
deserving of the ridicule is case specific.

~~~
prepend
What percentage of patients are bonkers? What percentage would benefit from
psychiatric treatments rather than non-psychiatric?

It’s really hard with some conditions to get a good diagnosis and course of
treatment?

Being called bonkers doesn’t mean it’s a good idea to act bonkers (tweetharras
someone).

It’s kind of like that narcissism test where narcissists just respond that
they are.

I think non-bonkers people should be able to work around the frustration of
being considered bonkers by a polite and civil doctor. It’s a real pain to
navigate the health system and I think terrible things happen because of it, I
fear there are deaths because it’s so hard to see healthcare workers and get
useful outcomes.

So being “royally insulted” is pretty typical. Trying to shut down a
researcher’s life work means there’s something wrong with the insulted, not
the insulter.

~~~
subcosmos
Watch this to understand the problem better :
[https://www.unrest.film/](https://www.unrest.film/)

And this :
[https://www.ted.com/talks/jen_brea_what_happens_when_you_hav...](https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose)

I study neurology and metabolism. If any of these patients are delusional, its
an exceedingly small fraction of them. Same goes for people diagnosed with
"conversion disorder", which is the idea that they are exhausted because they
are dealing with some buried repressed childhood trauma.

Some psychiatrists can have a real discussion with you about the intricacies
of the hypothalamus. Others ..... really not..... they will try and deal with
your systemic inflammatory problems with Fruedian psychoanalysis. Worse yet is
that many patients dealing with these deep fatigue and metabolism issues have
been institutionalized because people think they are just faking it.

------
blattimwind
> Yet some patients and their advocates say this amounts to a suggestion that
> the syndrome might be a mental illness or psychosomatic, a notion that
> enrages them. They would prefer that research efforts focus on identifying a
> biological cause or diagnosis.

The underlying stance (i.e. "psychosomatic and mental illness are no real
illnesses") is so utterly moronic I am surprised they even found the tweet
button.

~~~
pjc50
> psychosomatic and mental illness are no real illnesses

This is what people are told by medical professionals who are refusing to help
them.

~~~
jmcqk6
I'm not sure I'm following, so I want to make sure I've got this right. You
are claiming that there are medical professionals are telling their patients
that psychosomatic and mental illnesses are not real illnesses?

~~~
pjc50
There are certainly people going to their doctors complaining of various sorts
of chronic pain and/or tiredness, who may be given some tests and test
negative, who are then told "it's all in your head" and not offered further
treatment.

(It's bad enough with physical-but-hard-to-diagnose problems like
endometriosis; I know someone who's only just got a diagnosis after several
years.)

The level of treatment you receive and how seriously you are taken will depend
on which country you're in, how good your insurance is (where applicable), and
how you appear to the doctors.

~~~
prepend
It also depends on whether the healthcare worker is able to help or knows of
any treatment.

Sometimes a healthcare worker’s treatment options are honestly exhausted.
“Mental illness or psychosomatic” doesn’t mean the patient isn’t suffering, it
just means that doc has no idea what to do and that others should be
consulted.

It doesn’t it stop the condition from being a mental illness.

------
cm2187
Another field where science is on a collision course with online (and offline)
activists is genetics. As we decode and understand more of the genome, it is
possible that our genes affect more of our behavior than what the partisans of
tabula rasa hold for truth. And unless the political climate evolves, in a
power struggle between activists and science, I wouldn't bet on the
scientists.

~~~
dragonwriter
> As we decode and understand more of the genome, it is possible that our
> genes affect more of our behavior than what the partisans of the tabula rasa
> hold for truth

What “partisans of the tabula rasa”? Activists of both the left and right seem
more likely to be partisans of genetic determinism, though of which aspects of
intellect, identity, and behavior varies between them.

~~~
cm2187
Well a lot of our policies are based on the tabula rasa theory. Gender or
racial imbalances between professions for instance are attributed to cultural
bias and discrimination. It may be the case, I think only science will provide
a definitive answer. And you are right, far right activists do assume full
genetic determinism and they may also be proven wrong by advances in genetics.
But they are kind of a smaller marginal group, whereas partisans of the tabula
rasa are pretty powerful, particularly in academics.

~~~
ethbro
Or to restate, equality of opportunity and equality of... "ability" (in the
sense of Phelps-ian genetic uniqueness) get conflated. As though admitting the
latter differs somehow effects the righteousness of the former as a goal.

Agree that genetics v activism is going to get very ugly here.

We're already seeing it in health insurance: that's the essence of the pre-
existing condition debate.

Should people bear the cost or accrue the benefit of their uniqueness, or
should we share them as a community?

------
nabnob
This is also happening with research on detransition -

>Bath Spa University is conducting an internal inquiry into claims that it
turned down an application for research on gender reassignment reversal
because it was “potentially politically incorrect” and would attract criticism
on social media.

[https://www.theguardian.com/education/2017/sep/25/bath-
spa-u...](https://www.theguardian.com/education/2017/sep/25/bath-spa-
university-transgender-gender-reassignment-reversal-research)

~~~
djsumdog
I find this so problematic. There are a number of psychologists who are being
pushed heavily by social and transrights groups to always suggest
transitioning as an option. This goes against one of those classic staples of
what we teach people growing up: "You need to be okay with who you are."

Helping someone be okay with their own gender shouldn't be an ethically
questionable treatment to offer. After all there are risk from hormone
replacement therapy. Transitioning can also be an option for adults, but I
feel as if it's pushed too heavily for adolescence today. These are reasonable
questions, but they're often met by activists as being "anti-trans."

In a way, it's another example of what the article describes; the bullying
against psychologists from giving their actual views and opinions. There are
two really excellent Wrongspeak podcast episodes dedicated to this:

[https://soundcloud.com/wrongspeak/3-too-young-to-
transition](https://soundcloud.com/wrongspeak/3-too-young-to-transition)

[https://soundcloud.com/wrongspeak/8-gender-
dysphoria-101-wit...](https://soundcloud.com/wrongspeak/8-gender-
dysphoria-101-with-dr)

~~~
nabnob
Activists successfully shut down the Child Youth and Family Gender Identity
Clinic (GIC), in Toronto run by Dr. Kenneth Zucker, formerly one of the
leading researchers on trans health, who led the team that wrote the DSM-5
criteria for gender dysphoria.

These activists claimed that his clinic was using "conversion therapy".
Instead of following the gender affirmative approach, this clinic instead had
child patients work through their dysphoria with therapy and explore their
gender with play. His research found that 80% of children with gender
dysphoria usually end up desisting and leading healthy lives, which directly
contradicts the narrative that children who are gender non conforming need to
get on dangerous puberty blockers. [https://www.thecut.com/2016/02/fight-over-
trans-kids-got-a-r...](https://www.thecut.com/2016/02/fight-over-trans-kids-
got-a-researcher-fired.html)

------
kstenerud
If you think it's bad now, wait until "activists" have easy access to AI that
most people can't distinguish from real humans.

It's simple: Just pick a target of your ire, be it someone with ideological,
political, lifestyle differences, or just someone you don't like, point your
AI bot to it, and watch it harass your victim and anyone associated with them,
until they lose their job, reputation, friends, family, etc. Bots never get
bored, never forget to keep the pressure going. They continue, relentless,
until their target is destroyed, even if you've forgotten and moved on.

It'll start out as character-assassination-for-hire, but eventually the source
will leak, and then all hell will break loose.

It's a bully's paradise.

~~~
sandov
That already happens, but instead of bots, it's dumb people with a political
agenda doing the harassing, and they even do it with their own resources, you
don't have to pay for bot servers.

~~~
ativzzz
Yes, we tend to underestimate just how much energy, time, and money people are
willing to contribute to harassing someone whose ideas they disagree with.
Many times I find myself wanting to debate something online but the
consequences of accidentally stepping on someone's toes who is willing to
dedicate their life to destroying mine makes it just not worth the risk.

------
lcall
My doctor[1] says the PACE trial was very flawed in methodology and
interpretation of results, and set back research significantly because it was
seen to show "it's all in your head" (if I understand correctly), thus
discouraging research into physical causes. She also says the only known
effective treatment is to learn good pacing: careful budgeting of one's energy
expense.

But regardless of whether we agree medically or otherwise, we should treat
each other with courtesy.

[1] An internist who participates in and coordinates significant research, she
specialized in CFS and fibromyalgia after her (late) sister had CFS. They have
quite an organization with resources for doctors, patients, and families:
[http://batemanhornecenter.org/](http://batemanhornecenter.org/) . Over time I
have gained a high opinion of her and the organization.

EDIT: clarification in 1st paragraph.

~~~
elefanten
What about the empirical evidence of thousands of patients who have had
success with these therapies? Is it possible their experience shows it's not
as simple as declaring PACE completely proves or disproves the psycho/somatic
vector?

~~~
PACE-trial
There's thought to be a natural rate of recovery of around 5%, so there will
be many people who recovered while co-incidentally doing all manner of things,
CBT, GET, homeopathy, etc. There's no good evidence that CBT or GET help
people recover. Even relying on just subjective self-report questionnaires
prone to problems with bias, the PACE trial's prespecified recovery criteria
showed that there was no significant improvement in recovery rates when CBT
and GET were added to patients' medical care:
[https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.12...](https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20)

------
jshowa3
This is the problem when a society manufactures self-proclaimed experts on
everything that do no actual research or scientific studies in the field they
discuss. It's one of the many vices of the Internet.

------
dalbasal
GRRM (game of thrones author) summarized this in an apt way, that I think
applies to this case perfectly:

*(badly paraphrased) Before the internet, people (including grrm) sometime wrote fan letters. There was always an occasional hater, but mostly, people wrote letter to authors they liked. They generally didn't write to say they hated a book, or that they liked the first three but the last two were shite.

------
btilly
Here is a simple rule.

Any condition that can be improved with a placebo, has a possible
psychological component that can either be a cause or a contributing factor.
This is not to say that it is all in your head, or that all people with it
have it due to psychological reasons. But some of the people have at least
some of their symptoms worsened by psychological factors.

Anyone who finds this controversial has psychological issues with reality. And
this is true whether your condition is CFS or high blood pressure+heart
disease.

Now people don't want to believe that acupuncture is a placebo, but there is
ample evidence that it is. Therefore this applies to every condition that
people find that acupuncture can help for. And that is a lot.

~~~
doctorpangloss
It’s way more complicated than that. The diagnostic criteria changes over
time, for many diseases with psychological components, in ways that make
formerly pathological behaviors now healthy and vice versa.

Placebo doesn’t actually help you, obviously, despite what the outcome you’re
measuring suggests. It represents a slack (something not quite an error, but
not quite a useful measurement) in the outcomes based measurement regime. It’s
a “cosmological constant” as a side effect of the limitations of enumerating
causal and contributing factors.

People believe acupuncture is a placebo, and in an evidence based medicine
regime it seems reasonable to prescribe it. But it depends what you’re calling
pathological. Today, a population of video game players versus a control will
score better on many psych outcomes. Tomorrow, they’ll change the tests,
subtly, to account for “factors” better, and the results will reverse. The
USMLE study book in 2018 pathologizes “video game fixation” (they can’t call
it an addiction) before such a test change has occurred. The simple rule is
that whatever society determines to be pathological will trickle down to the
field of medicine, and placebo effects are the loudest signal of the
limitations of an otherwise most superior way to administer therapies.

~~~
logifail
> Placebo doesn’t actually help you

What?

The first definition of the placebo effect I found was this:

" _a beneficial effect_ produced by a placebo drug or treatment, which cannot
be attributed to the properties of the placebo itself, and must therefore be
due to the patient's belief in that treatment"

My highlight.

~~~
UnFleshedOne
He means that most of the placebo is covered by a statistical effect,
regression to the mean, etc.

[https://sciencebasedmedicine.org/the-placebo-
myth/](https://sciencebasedmedicine.org/the-placebo-myth/)

~~~
btilly
That may be most of the effect on the group taking the placebo. But it is not
the placebo effect.

Were there no placebo effect, then we could test the effectiveness of drugs by
simply observing one group and giving the other our proposed treatment.

~~~
logifail
There are drug candidates that make it all the way to phase 3 trials before
they fail. One of the (surprisingly?) common reasons for failure at this stage
is _turning out to be less effective than placebo_

[https://www.nuventra.com/resources/blog/placebo-response-
pha...](https://www.nuventra.com/resources/blog/placebo-response-
phase-3-failures/)

[https://seekingalpha.com/article/256697-why-
phase-3-trials-f...](https://seekingalpha.com/article/256697-why-
phase-3-trials-fail-what-investors-need-to-know)

~~~
btilly
Reading the articles left me with the impression not that they were less
effective, but that they couldn't prove efficacy. So they could win, or lose,
but it was close.

It is also worth noting that one of the reasons why this happens in stage 3
despite having passed through a test in stage 2 that was meant to whittle this
out is that improved expectations increase the strength of the placebo effect.
Which makes the real effect harder to detect.

~~~
logifail
> not that they were less effective, but that they couldn't prove efficacy

Could you explain the difference?

~~~
btilly
To prove efficacy, you have to have a statistically significant win.

If you're ahead by a small margin, it isn't evidence that you're less
effective. But you did not prove efficacy.

------
cwyers
There's a lot of people in the thread who are saying that people are reacting
the way they are to this study because of the "stigma" against mental illness.
Well, maybe that's part of it. But there are other things going on here. The
Reuters article references the PACE study. And people are not just objecting
to the "stigma" but the actual consequences of the study.

[https://statmodeling.stat.columbia.edu/2015/12/18/28362/](https://statmodeling.stat.columbia.edu/2015/12/18/28362/)

> I agree it’s an absolute disaster of a paper. It otherwise should not be the
> object of my attention but there is some nastiness associated with its
> dissemination. Peter White, one of the authors is paid for working with a
> group trying to get social welfare payments denied to people with chronic
> physical illness. He promotes the idea that chronic fatigue syndrome,
> whatever its origins, is perpetuated by fears of exertion. The
> deconditioning model that is the basis for these claims has been
> discredited. So he is forced to rely on dodgy research like this to promote
> the view that chronic fatigue syndrome is largely “cognitive” and
> psychosomatic. I’ve seen horrible testimony from him that patients who
> “appear” to be disabled should be denied handicap parking passes because
> that will force them to walk more. He has personally testified in a number
> of hearings where patients with chronic fatigue syndrome have had the
> benefits revoked.

In other words, the study is being used _by one of the authors_ to deny people
state benefits meant to help people with chronic conditions.

~~~
cpncrunch
>In other words, the study is being used _by one of the authors_ to deny
people state benefits meant to help people with chronic conditions.

No, that is simply not true. You need to be careful who you listen to. Coyne
has a history of nasty abuse against people who disagree with him [1], and
there is no evidence whatsoever for that particular statement that you quoted
(I just looked for it). PACE was funded by DWP, but it is a huge leap to say
that they wanted to deny benefits. They are clearly interested in effective
treatment, and if you listen to the recent debate of ME in parliament the DWP
specifically have a policy of giving benefits for ME.

[1] [https://www.thetimes.co.uk/article/scientists-trade-
insults-...](https://www.thetimes.co.uk/article/scientists-trade-insults-over-
myalgic-encephalomyelitis-me-study-slk0cv5lj)

------
driusan
The sadest part about this is that it's all because the stigma against mental
health problems is so strong that people are this outraged over research that
might even _suggest_ their illness has a psychological component.

------
caconym_
Lots of overwritten comments in here trying to make this into something that
it's not. How strange.

I wish we could not do this because CFS sucks and research into it has the
potential to make a lot of people feel better. In a perfect world we would
just let that research happen and ignore it until it proves something useful
about treating CFS.

I guess what people might worry about is doctors saying "I heard about XX
research" and then ignoring symptoms even if the diagnosis doesn't really fit
or the treatment isn't helping, but that seems like a problem with doctors.
The whole "it's all in your head" thing seems to come up often and it's not
restricted to CFS, though CFS might be used as a lazy catch-all diagnosis when
in fact there is something going on that is well-understood and treatable.
Speculation, of course.

------
leftyted
These activists seem to be promoting an all-or-nothing approach to medicine.
But attempting to alleviate symptoms seems like a valid - and common - medical
approach. If physical therapy or talk therapy can improve the quality of life
of CFS/ME sufferers, isn't that worth knowing?

~~~
monotone666
The problem is that in many chronic fatigue patients they would have to choose
between physical/talk therapy and eating or showering for the day. Its a
severe disabling condition, not just feeling "tired."

------
JabavuAdams
This is sad. What's striking is this artificial mind / body, psychological /
biological way of thinking.

All psychology stems from biology. Having a condition that may benefit from a
psychological intervention doesn't mean it isn't real. It's like developers
saying that you're not allowed to fix software bugs, because unless it's a
hardware bug you're saying it's not real. Weird and counterproductive.

------
schlagetown
This article seems to gloss over possible physical causes for CFS/ME, sort of
implying that nobody has any idea what physical basis there might be for it.
But that's…not entirely true?

For example, there's at least some evidence linking it to mitochondrial
dysfunction, see e.g.: [https://me-pedia.org/wiki/Mitochondria](https://me-
pedia.org/wiki/Mitochondria)

> There is evidence of mitochondrial dysfunction in chronic fatigue syndrome
> patients. Muscle biopsies have shown evidence of mitochondrial degeneration,
> deletions of mitochondrial DNA, the reduction of mitochondrial activity, and
> Sarah Myhill found measurable mitochondrial dysfunction correlating with
> severity of illness. Myhill also produced improvement by targeting those
> dysfunctions. Mitochondrial DNA variants correlate with symptoms, symptom
> clusters & symptom severity.

Far from conclusive, but I think worth at least noting.

From both reading a variety of sources on the topic, and having someone close
to me with CFS/ME for many years, I think it's pretty clear that a) there's
most likely a physical basis for it, b) we don't yet know how it works, and c)
research on this is drastically underfunded.

Considering _millions_ of people are affected, there should be _way_ more
resources put towards it. Hundreds of millions of dollars per year, to put it
on par with funding of similar diseases. (See:
[https://www.meaction.net/2017/01/07/dimmock-mirin-jason-
esti...](https://www.meaction.net/2017/01/07/dimmock-mirin-jason-estimating-
disease-burden-in-the-us/))

------
rtp
I think that ME/CFS will go the same way as MS.

Once upon a time, not long ago, MS sufferers were deemed "hysteric", "crazy"
etc, until there was technology that could show physical evidence of the
damage caused by MS.

~~~
Angostura
Except, of course that no-one sensible is calling these suffers 'hysteric' or
'crazy' are they? Certainly not this researchers. They are simply saying that
their symptoms may have a psychological component. Which should not be
controversial, if evidence-based.

~~~
anigbrowl
Are you sure about that? Insurers and primary care doctors are often very
dismissive of symptoms, and may invoke the (wholly innocent and well-
intentioned) arguments of researchers to deny treatment. That's not the fault
of the researchers, but conversely researchers need to be mindful of how their
work might be employed in the service of economic rather than clinical
considerations when developing their hypotheses.

------
skywhopper
I’m not sure there is a fix here. Facebook, Twitter, Reddit, et al can be used
as powerful tools to conduct organized harassment and coordinated bullying.
And the bullying is remarkably visible and thus easy to report on so we also
hear about it all the time.

And yet this is ultimately just normal human behavior, amplified. There have
always been crackpots who lead frustrated and scared people into mob behavior
of blaming some specific opinion or type of person rather than confronting
their problems head on. When your problems seem unsolvable you’re very likely
to fall for this sort of trap.

This specific issue with CFS research is just one microcosm among thousands of
others, all the way up to the world of national governments and international
relations, which suffers from all the same behaviors and toxicity. It’s
amplified more now, but no different than it has ever been.

------
aantix
I hope we find more individuals and companies that just opt out if the entire
Twittersphere.

Everyone does not deserve an equal voice on all topics and tempting yourself
to read such unchecked commentary is only personally counterproductive.

Keep a few trusted advisors close, toss the rest of the social justice couch
warriors to the side.

------
sergiotapia
Twitter is a cesspool of degenerates and people with nothing to do with their
lives except hunt for that dopamine hit. What do you possibly gain by having a
social media presence? You have everything to lose.

People are harassing a scientist for crying out loud. Nobody has a chance.

------
pjc50
So there's basically three things going on here which need to be clarified.

1) People advocating alternative therapies stirring up trouble

> "The campaigner and doctor behind MAIMES, Sarah Myhill, has posted YouTube
> videos setting out her views: “I liken it to child abuse,” she says in one
> that has been viewed more than 8,000 times. “This amounts to a form of
> abuse, because these people” – CFS/ME patients – “do not have the energy to
> defend themselves.” Myhill has published several books advocating what she
> calls a “naturopath’s” approach to treating symptoms of CFS/ME – one using a
> tailored combination of nutrition, rest and medicines. She hasn’t published
> peer-reviewed research on the efficacy of her approach."

This is highly suspect, like the group of quacks that started pushing
"vaccines cause autism". It would be different if they were participating in
the scientific process themselves.

2) People who have been denied treatment or disability accommodation because
"it's all in your head".

To them, someone arguing that there is a psychological cause is not
facilitating them getting the right treatment, it's someone _preventing_ them
getting treatment.

Given the interaction with disability benefits, having your disease declared
to be in your head may result in the money you need to live being withdrawn.
It's very high stakes.

3) Random internet cranks.

There are a lot of these, and someone who is unable to work and not very
mobile and in constant pain is the _ideal_ candidate for self-radicalising
into a hate campaign. They have nothing else to do.

~~~
gph
>Given the interaction with disability benefits, having your disease declared
to be in your head may result in the money you need to live being withdrawn.
It's very high stakes.

I didn't think a disease being mental ('all in your head') was relevant to
disability? At least in the US I know people on disability because of mental
illnesses.

~~~
pjc50
I did say "may"; also, there's a very big difference between declaring
someone's illness to be a "real" "recognised" mental illness, and declaring it
to be "all in their head".

The UK system is particularly bad at finding spurious reasons to dismiss
disability claims.

------
elefanten
One actionable move would be to reach out to the Berkeley School of Public
Health and inform them that their Senior Fellow David Tuller is engaged in
unprofessional mob-wrangling behavior. Could contact the New York Times as
well. I made a comparison to the behavior of anti-vaxxers, which seems like a
pretty reasonable reference point which will communicate the issues quickly.

It could be helpful to the harassed researchers to at least establish a base
of official complaints going the other way. Especially if they are written in
a reasonable and evidence-based manner.

------
LinuxBender
I can see both sides of this. Having read most of nih.gov /PubMed, it is easy
to see how some research can easily be classified as paid advertisements. They
are quite easy to spot once you have read through enough research. Telltale
signs are a lack of prerequisites, lack of reproducible methods, lack of test
subjects, lack of funding references, lack of email addresses. Some folks have
even found it rather easy to get fake research papers published without anyone
having actually vetting the data. So in summary, I believe some of the blame
falls on the scientific community for not doing a better job policing itself
and making it easier to report pseudo-research to moderators using a publicly
transparent methodology.

In terms of the patients getting frustrated with a lack of acknowledgment of
their issues, I believe that is due to a misconception about the medical
industry. It is very rare to find doctors that will "color outside the lines",
so to speak. If a medical condition is not well documented and accepted by the
medical industry and insurance companies, then a doctor is risking a journey
down a rabbit hole and risking the patient being frustrated without having a
clear path to a treatment (for symptoms or a cure). It is frustrating for
everyone involved, but I don't think this is something that medical
professionals can do anything about. I have no idea what the right path is.
For my own issues, I have considered starting forums for scientists and
biohackers to share findings, but I am just lazy and busy enough to kick that
can down the road.

------
dqpb
> _The insufferable arrogance of Prof Michael Sharpe once again on show for
> all the world to see_ \- Paul Watton

> _You need to be as arrogant as men are to believe we changed the climate_ \-
> Nicolas Sarkozy

I find this criticism - that you would have to be arrogant to believe
scientific results - both fascinating and deeply disturbing.

I'm not sure if it's an ingenious thought-terminating troll hack - raising a
social complaint (which humans instinctively fear) as a sigint to abort
further thinking, or just profound idiocy.

~~~
elefanten
It could be people reaching for extreme and hyperbolic language to express
their emotions (maybe moreso than their ideas)

------
spinach
Calling these people 'activists' seems a bit disingenuous, since they just
appear to be harassers. They aren't respectful and dig into the personal lives
of the researchers. Later in the article it's even mentioned they harass
patients who got better with the proposed treatment. At some point you are
just an asshole pretending to be a saviour.

Who would have thought that a by product the internet - social media - would
actually hold science back.

~~~
sorryforthethro
Maybe it's pessimistic, but I also see a profit motive here, the
"psychological" CFS treatments have the potential to cut into modafinil/etc
recurring profits.

------
aestetix
It's not just scientists. It's most fields and most opinions that don't agree
with whatever the cause of the day is.

I deleted my twitter account over a year ago (after ten years of it), and
stopped using twitter. However, I still refrain from saying what I actually
think about an issue online now. It doesn't matter if it's a left wing or
right wing opinion, nor does it matter what the issue is. If you fall afoul of
the online activists (regardless of left-wing or right-wing) it can suck up
all your time and energy and ruin you.

The big problem is that it's easy to publicly shame and silence someone, with
little to no consequence for doing so. And I place most of the blame here on
Twitter.

------
vgoh1
The prevailing opinion is to just let the scientists do their work, and don't
second-guess them. Well, there is a reason that they are being second-guessed.
Look at all the harm that has occurred because of the old scientific consensus
that we should be removing fats from our diet. The reasons for this consensus
was not only shoddy studies, but there was a lot of politics involved,
drowning out dissenting voices. Today, there are a lot of studies being funded
by organizations that are influencing the results of those studies.

We should be questioning scientific studies. The problem is, people are going
about it the wrong way. They are just throwing out the scientific method,
logic, etc. Science is not flawed, but the studies are flawed, in that more
than just science is being used to influence conclusions.

There has to be some blame put on the scientific community for why it is so
popular to question their work in the modern era.

------
rfugger
I have chronic fatigue syndrome since a bad viral infection in 2001. I find
this article quite unfortunate. There is plenty of good research being done
into CFS that does not generate the outrage that the PACE trial has. There are
many reasons that particular study has been the focus of campaigners while
other researchers are encouraged or left in peace, but I would encourage those
who are coming to this issue here for the first time to do some more reading
before coming to an opinion.

The abstract to the study itself is here (the full study is behind Elsevier
paywall):

[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/?report...](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/?report=reader)

David Tuller's blog critiquing the study is at:

[http://virology.ws](http://virology.ws)

Searching for "PACE trial" will bring up plenty of articles on either side of
the debate.

My own thought as to why this particular study stirred so much controversy is
that it has been seized on by some in the medical-political establishment in
the UK as defining a solution for all CFS sufferers, and negating the need for
further study into the condition (although recent hearings in UK Parliament
have begun to reverse this approach), when really the effect demonstrated by
the study is quite small. Fortunately, the US establishment has not taken this
tack:

[http://nationalacademies.org/hmd/Reports/2015/ME-
CFS.aspx](http://nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx)

[https://www.cdc.gov/me-cfs/index.html](https://www.cdc.gov/me-cfs/index.html)

CFS remains a poorly-understood disease with a grossly underfunded research
program when the number of people affected and the severity of the condition
are taken into effect. Those who rally against PACE in particular seem to be
mainly asking that it not be the end (or even the main direction) of the road
in terms of CFS treatment and research in the UK.

In my opinion, global social media systems are toxic on nearly every topic,
not just this one.

~~~
erentz
Hi, fellow here who also meets the ME/CFS criteria. These articles in which
Sharpe and Weasley pop up are always very disturbing because they cry “ow,
poor me, the big mean activists are attacking science!!” And it’s surprisingly
effective as seen in this thread. People assume they’re doing real science,
and the activists are of the bad type.

But in this case it’s Sharpe and is colleagues that aren’t doing real science,
they’ve done an abortion of a study full of holes, and it’s been used to cause
harm to very ill people. Causing denied disability, forced exercise (which is
contraindicated for ME/CFS), and do on. Their study has been torn to shreds by
other real scientists but they refused to accept it and they call this
response activism.

Sadly as we see here lay people even in tech are all too eager to lap up their
claims.

Prof. Bruce Levin at Columbia even started using Sharpes and co’s PACE trial
as a teaching example of all the bad things you can do to make a wrong study.
(His slides were online but I’m having trouble find them right now.)

Another accessible article on the subject:

[https://www.statnews.com/2016/09/21/chronic-fatigue-
syndrome...](https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-
pace-trial/)

Edit: here is Sharpes colleague Wesseley comparing people who refuse their
PACE trial to climate change deniers and antivaxxers. Its entirely them who
are refusing the science though because it shows they got it very wrong.

[https://www.forbes.com/sites/julianvigo/2018/06/27/resistanc...](https://www.forbes.com/sites/julianvigo/2018/06/27/resistance-
to-science-and-technology/)

~~~
elefanten
As someone who is new to this subject as of this thread, let me share some
honest feedback. The way you describe and defend your position leaves me
deeply skeptical about your claims.

"Real science", "abortion of a study", "real scientists", "entirely them who
are refusing the science"

Even if your claims and descriptions happen to be right, the certainty,
starkness and immature/sweeping language have led me to assume I would
disagree with you if I dug in.

Just sharing a piece of outsider anecdata.

------
deadmik3
> Many researchers cite evidence that talking therapies and behavioural
> approaches can help in some cases. Yet some patients and their advocates say
> this amounts to a suggestion that the syndrome might be a mental illness or
> psychosomatic, a notion that enrages them. They would prefer that research
> efforts focus on identifying a biological cause or diagnosis.

this seems to be the case for many probably-psychosomatic issues in the modern
age of tumblr self diagnoses

------
tejtm
I wonder if it was grassroots or astroturf in origin. Following money, pharma
is the only looser if some folks can live with out constntly being drugged and
disabled.

------
ethbro
Obligatory link to Kialo: [https://www.kialo.com/should-governments-ever-
limit-free-spe...](https://www.kialo.com/should-governments-ever-limit-free-
speech-22454)

Mostly because of my thinking it'd be great if there were a site where actual
debates could be had, empowered by technology, and supported by facts.
Essentially long form debating.

And then something hit the HN front page that week.

------
edoo
Randoms leaving mean messages on your public social media isn't silencing you.
The truth always comes out. You have real science or you don't.

~~~
dlivingston
The determination of what's real science or not should be largely left to
domain experts. Randos online should have little to no say. This is how anti-
vaxxers and creationists have such a huge presence.

~~~
edoo
Randos have no say. How are scientists even being influenced by them? Domain
experts? Real science predicts the future, it either works or doesn't. Anti
vaxxers are a different issue, I don't even think they deny the science and
just want the personal choice to choose.

------
meej
NPR's Invisibilia podcast started their latest season with an episode about
amplified pain. Looks like they got some backlash, too.

[https://www.npr.org/2019/03/06/700743108/the-fifth-vital-
sig...](https://www.npr.org/2019/03/06/700743108/the-fifth-vital-sign)

------
lez
I was cured from CFS to the point I can live a normal life with a
controversial substance called MMS in 2 weeks time.

The very same thing happened with a friend of mine.

It's not an attempt to win any scientific argument with anecdotes here,
instead I am just adding my data points.

~~~
fluffycat
MMS is sodium chlorite, sorry but if it cured you, you were either not sick,
or something else happened.

------
daedlanth
We have a lot of work to do understanding complex symbiosis. The skew in this
qaugmire is simple; everyone is wrong and everyone is right. One on one
interaction with an intelligent, compassionate person goes a long way.

------
maxmunzel
I think one of the basics ways for us to combat this kind of situations is to
be more mindful about the people who do good. A single, thankful email from
someone who profited from his work goes a long way.

~~~
magduf
Some thankful emails isn't going to make up for a bunch of angry activists
doxxing you and getting you fired.

------
egberts1
Then carefully reiterate your premise/conclusion and if possible a recreatable
conclusion. After all, it’s science!

------
sleepysysadmin
Point of the article is that it's becoming toxic to discuss issues; they
brought up climate change in the article. I posted a climate skeptic point of
view and literally said I was testing to see how toxic it really is.

Absolutely nobody actually responded to the point I made. They called me a
contrarian, a troll, being off-topic, using fallacies, and being insincere.

This is the point of the article and I literally showed it.

------
drinane
Usually you tell a scientist they are wrong by doing better science.

Check out hot yoga is my two cents.

------
craftinator
This situation strongly reminds me of the book Seveneves, by Neal Stephenson.

------
PACE-trial
This article seriously misrepresents matters. Not that there's no mention of
the substance of the science.

David Tuller has written on this topic in publications like the New York
Times: [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-
it...](https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-
chronic-fatigue-syndrome.html)

There are some summary pieces from science blogs:

[https://sciencebasedmedicine.org/treating-chronic-fatigue-
sy...](https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-
with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-
trial-got-it-wrong/)

[https://senseaboutscienceusa.org/pace-research-sparked-
patie...](https://senseaboutscienceusa.org/pace-research-sparked-patient-
rebellion-challenged-medicine/)

There are also important political aspects to this, particularly in the UK,
eg: [https://www.huffingtonpost.co.uk/dr-simon-duffy/the-
misleadi...](https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-
research-a_b_9726490.html)

Cochrane commissioned a report which confirmed that Courtney's complaints
about Larun's work were well justified: [http://www.virology.ws/wp-
content/uploads/2019/03/Cochrane-R...](http://www.virology.ws/wp-
content/uploads/2019/03/Cochrane-Report-on-Courtney-Complaint-1.pdf)

If anyone has any questions, I'll try to answer them. This Reuters piece is
more spin and BS from powerful people who want to avoid engaging in debate
about the problems with their work.

The Journal of Health Psychology published an entire special issue on the PACE
trial:
[https://journals.sagepub.com/doi/full/10.1177/13591053177223...](https://journals.sagepub.com/doi/full/10.1177/1359105317722370)

------
vectorEQ
getting tired of tired people being tired of being tired.

------
jillesvangurp
There's bigger problem here: algorithmic manipulation of public opinion by
well funded special interest groups (including some nation states). You can
influence elections, legislation, cause riots, etc. with expensive but
feasible campaigns of misdirection, fake news, provocation, and propaganda.
Online activists are merely pawns; you need to look at the shadowy
organizations behind them.

It so happens that the interests of these groups are well aligned with ad
driven media companies that depend on manipulating their users into getting
addicted with their content algorithmically. This means that provocative
content wins over interesting niche content. It drives more users to engage
more and come back for more. Bonus points if they get angry and frustrated,
because they'll produce more content. Facebook, Twitter literally optimize for
addictive quality because it drives their revenue. They want people to
continuously check their feeds, have withdrawal symptoms when they don't, etc.
It drives a lot of mindless content, constant streams of negativity, etc.

So, our current social media feeds, news media, etc. are highly susceptible to
manipulation and the average media consumer is blissfully ignorant of the fact
that they are being manipulated.

When it comes to science vs. a well funded special interest group or populist,
the truth loses. Proclaiming the earth was flat was highly unpopular in the
15th century for religious reasons. Then we had enlightenment and it became
established fact for a while. And now we have anti-vaxers, flat earthers,
global warming deniers, christian fundamentalists, muslim fundamentalists,
etc. being fed a constant stream of fake news, pseudo scientific bullshit,
etc.

Mostly the people behind this manipulation are not even spreading truth but
deliberately creating division. E.g. the Russians will happily troll all sides
in a debate if it creates conflict. Whether it's e.g. the birther movement,
the Clinton email scandal, etc. does not matter. It's not about spreading
truth. Whatever gets republicans fuming or liberals protesting will do. It's
all about division. Divide and conquer. Distorting the truth is a means to an
end. As Trump has demonstrated, you can always deflect undesired attention by
creating a bigger scandal. Modern people are like gold fish when it comes to
attention spans. People getting to curious about his taxes? No problem, just
insult women, blame Obama for whatever, or just plain yell something silly and
surreal. It works. He's a great manipulator.

What I find interesting is that the Chinese and Russians seem to be more in
control domestically of this and are less sensitive to external manipulation
because they do all the manipulation themselves and filter out anything less
aligned with the party line. So, China has no anti global warming movement and
is moving full speed to fixing that problem for themselves by mass
investments. They love science there because it empowers them and boosts their
economy. Russia is a bit less successful, mainly because it has devolved into
a kleptocracy. But yet, they keep a space program running, are producing scary
weapons, etc.

IMHO the way out is introducing reputation into our feeds and countering
hostile algorithms with friendly algorithms that take this into account. Also,
ad business needs to die and we need to find alternate ways to reward quality
news content. Fixing the incentives will fix the algorithms.

------
ayvdl
Why does a medical researcher _need_ to be on Twitter?

~~~
beobab
Need vs want.

I don't NEED a computer at home, nor a mobile phone.

But I want one. And I am allowed to have one.

And someone else's dislike of my having those things does not stop me from
being allowed to have them

~~~
ethbro
Possibly a bit need? I'm not sure if academia actually uses Twitter to
network, but I wouldn't be surprised. Last exposure to university was in
proto-FB days.

Per analogy, one could probably argue that you _need_ a phone of some sort
(per professional expectations).

~~~
beobab
During work: I think it depends on your profession. If your job does not
involve interacting other humans in any way, or you are all in the same room,
then you do not need a phone to communicate.

Job hunting: This would be significantly harder without a personal phone, but
regular trips to a recruitment agent's office could make it possible. I can
certainly see that it would be a significant advantage to have a phone.

At home: Hugely depends on how far and wide your family have spread. If they
are all within walking distance, then you don't need a phone. Sure it's more
convenient, and sure, you'll spend a lot of time outside people's houses
wondering if they're actually in, but that's how I grew up without a mobile
phone. Interestingly, I would counter-argue (with myself) that you do need a
phone if you are the only family member in a remote area, if only for your
mental health.

Emergencies: Yes, sometimes you just need a phone.

So yes. A bit need.

------
throwaway5752
This is not scientific research, it's chronic fatigue researchers getting hate
mail. Also, it's not activists, it's random crackpots.

Edit: look, read the article, and then downvote me if you must. I am sure that
online activists in many areas are reducing public discussion. I'm not
addressing the subject in general; just this article. Specifically, the
article talks about a very particular narrow, topic (chronic fatigue syndrome
and research indicating that it's psychosomatic) and doesn't talk much beyond
one actual activist in that area, Tuller. The title would have been better as,
"CFR activist harasses CFR researchers".

Edit: could hardly get downvoted more than I have been already, but the irony
that "activists" are silencing people is rich. Maybe anti-activist activists
are activists, too.

~~~
maxxxxx
You can be an activist and crackpot. These things are orthogonal.

~~~
lawnchair_larry
Probably correlated, even

------
ohiovr
Revilers on the rise

------
m23khan
Over the last 100 years or so, we have gone from having Philosophers who were
the thought leaders (and shapers) for the masses to legion of online warriors.

------
sleepysysadmin
I feel like the topic of CFS is irrelevant to the story. Why is there such
toxicity online creating these echochambers.

If you point out anything that might question climate change for example, you
will be called all kinds of names. Nobody looks at the points you are making.

Let's test it right now. I'm sure I'll get downvoted and nobody will respond.

[https://en.wikipedia.org/wiki/Geologic_temperature_record#/m...](https://en.wikipedia.org/wiki/Geologic_temperature_record#/media/File:Five_Myr_Climate_Change.png)

Over the last 5 million years temperature has been going down but also
becoming more aggressive in the swing in temperature. If you look at the last
20,000 years we are in the standard rapid spike in temps and CO2 and we have
NOT spiked any higher than you would expect.

The minor spike in CO2 in the last 200 years is a small fraction of the spike
over the last 20,000 years.

If you look up the Eocene period(after the dinosaurs went extinct). It was
14celcius warmer than today's climate. Life was great back then; Canada/Russia
wasn't a frozen wasteland.

Climate change is good.

~~~
dwaltrip
I don't have time to research your contrarion claims right now. My priors
suggest it isn't a good use of my time. But I have to ask:

Why haven't the climate change researchers figured out what you have?

Do they have rebuttals to these claims? If so, can you please link those
rebuttals in the name of transparency?

P.S. You are being downvoted for being wildly off topic as well as a bit
inflammatory.

~~~
webXL
How is this _wildly_ off-topic if the subject of the article is online
harassment of scientists, and climate change is specifically mentioned? The
implied direction of the harassment might not be what the OP was talking
about, but it's certainly related to the topic.

As for the inflammatory bit, you might have a point there, but the kind of
climate change that enabled humans to evolve might garner that fabled 97% of
backing not only from scientists, but humanity in general. So in the proper
context, climate change is good.

~~~
dwaltrip
> How is this wildly off-topic if the subject of the article is online
> harassment of scientists, and climate change is specifically mentioned?

I read the article and didn't notice it. Looking back, it was an offhand
mention in a fragment of a single sentence. Clearly not the focus.

> As for the inflammatory bit, you might have a point there, but the kind of
> climate change that enabled humans to evolve might garner that fabled 97% of
> backing not only from scientists, but humanity in general. So in the proper
> context, climate change is good.

This is a strawman. No one is talking about that kind of climate change.

~~~
webXL
> Clearly not the focus.

But also not wildly off-topic. Every HN discussion brings in all sorts of
viewpoints that make it more encompassing of the submission's focus. If
something is tangentially related, it shouldn't be dismissed out of hand.

> No one is talking about that kind of climate change.

Um, they should be. How else would you answer the question what's the optimal
climate if we're trying to mitigate change? Surely if it's not the current
climate, then successfully changing the climate to the optimal conditions
would be "good" climate change, right?

------
SolaceQuantum
I'd like to comment here that this is primarily about chronic fatigue
syndrome. There are other handwaving statements towards vaccines, global
warming, and GMO, but none of those statements have a clear factual outlay.
It's particularly interesting to me that it was implied that the activism
against physical exercise/CBT to treat (not cure) chronic fatigue had done
damage to the motivations of scientists to perform further research into the
treatment of chronic fatigue.

 _This was distinctly not about common controversies around identities such as
the existence or non existence of biological /cognitive differences of race,
sexuality, and gender, even though those would be IMO the most pertinent
subjects to cover about how(and if) science is affected by activism_ (as they
have the most significant activists for all possible political opinions). I
find that this exclusion particularly fascinating, or is it perhaps I am
personally biased to assume they're more common and more obvious journalistic
study due to my existence in tech, where the gender and racial gaps are talked
about by all of the leading industry employers?

EDIT: I should clarify I do not know if science is affected by activism, but
anecdotally I hear a lot about how such-and-such field of study (particularly
about race, gender, and sexuality) is being limited because of activism. I've
never seen actual evidence of this limiting, and the fact that this article
explicitly excludes all three may be a 'absence of evidence is evidence of
absence' scenario. Or again, it may be that I am personally more aware of
those specific discussions due to my presence in tech where those positions
are taken far more than chronic fatigue syndrome is discussed.

~~~
stdbrouw
> There are other handwaving statements towards vaccines, global warming, and
> GMO

It's not entirely clear from the layout, but that bit of content is a kind of
"info box", a bit of extra information that in a printed magazine you'd find
in a box alongside the main article, meant more as context than as a
substantial article on its own. That explains why it merely points out these
other cases where activism might clash with science and doesn't go into
detail.

> This was distinctly not about common controversies around identities such as
> the existence or non existence of biological/cognitive differences of race,
> sexuality, and gender, even though those would be IMO the most pertinent
> subjects to cover about how(and if) science is affected by activism

It would be a different article then wouldn't it :-)

~~~
SolaceQuantum
1\. Yes, the extra information provides context, but not a solid and deep
exploration.

2\. Yes, it would be different and I think it's very interesting that the
broad journalistic investigation "is research influenced by activism?" does
not reach to the most prominent topics that come to mind of "topics that have
a lot of controversy, for which there are claims that research in this sphere
is influenced by activism". The fact it covers CE as an example, and not race
or gender could imply that there isn't research that states differently than
activism, whereas CE does have this split.

EDIT: The claims that I'm mentioning have already been populated in this
discussion thread as a whole, so I'm pointing out that there doesn't appear to
be evidence in this article that politically "leftist" politics is suppressing
academic research, but is focused quite specfifically on CE/CFS, which doesn't
appear to fall into a clear leftist/rightist deliniation of beliefs.

~~~
elefanten
I don't think you should draw conclusions about any other areas of research
from this piece. I didn't get the impression the article was trying to make
any broader statement about activism vs research. The piece gives one example
of that tension, but that tension is not the focus of the piece.

The article was a specific investigation into the dynamics between vocal CFS
activists and researchers pursuing a particular path of treatment.

In short, the conclusions you are trying to draw are completely out of scope
for this article.

~~~
SolaceQuantum
The conclusion I'm drawing is that this article isn't about a more
controversial subject that this article is now being used to justify positions
of the controversial subject in this very thread.

------
RobertRoberts
I feel like posting your personal science based work on social media walks the
thin line between education and self interested-marketing.

What if after a year of posting, you find an error in your study? You have
just misinformed everyone for a year. How do you backtrack on that?

~~~
jdietrich
_> What if after a year of posting, you find an error in your study? You have
just misinformed everyone for a year. How do you backtrack on that?_

If a paper turns out to be flawed, then you retract the paper. In order to
retract it, someone needs to figure out that it was in fact flawed. Most
scientists don't knowingly publish bad research, they just make mistakes that
get missed in peer review. Keeping research hidden away in paywalled journals
isn't going to improve the quality of science one iota.

Expecting scientists to maintain radio silence is roughly analogous to
security by obscurity, with the same obvious shortcomings. The literature is
full of widely-cited studies with significant methodological flaws, because
they're useful enough to cite but not important enough to warrant serious
scrutiny. If we're serious about building a credible scientific literature, we
need to subject papers to the disinfectant of sunlight. We need to leverage
the power of social media to make connections between scientists, iterate
faster, bring informed laypeople into the conversation and find those bad
papers.

~~~
naasking
> If a paper turns out to be flawed, then you retract the paper. In order to
> retract it, someone needs to figure out that it was in fact flawed. Most
> scientists don't knowingly publish bad research, they just make mistakes
> that get missed in peer review. Keeping research hidden away in paywalled
> journals isn't going to improve the quality of science one iota.

Except OP wasn't suggesting keeping silent, he was suggesting not broadcasting
it on social media. You can broadcast it through scientific channels of
course, because scientists generally know to preserve some healthy skepticism
until something is replicated.

Some new result on social media could easily go viral so almost everyone hears
about it, but do you think the retraction on social would get the same
attention? Of course not, so it's about stopping the spread of misinformation,
which I hope you agree is a problem these days.

~~~
jdietrich
The public discourse around science is dominated by non-scientists, many of
whom habitually make grievous and blatant errors. Telling scientists to "stay
in their lane" and avoid talking about their research in public isn't going to
improve the quality of that discourse.

~~~
naasking
> Telling scientists to "stay in their lane" and avoid talking about their
> research in public isn't going to improve the quality of that discourse.

There's a difference between results that have been validated by multiple
studies and replicated, and results that have only one or two studies backing
them. I think the replication crisis clearly shows why.

Furthermore, there's also a difference between scientists making positive
claims and scientists correcting improper interpretations of existing results.

I think my post was pretty clear about what scientists should not be writing
about on social media. Writing about anything else is perfectly fine.

------
monotone666
Copy of what I sent him:

"5 years ago I wanted to be a pro wrestler and had taught myself a couple
advanced level gymnastic skills. I went to shovel snow one day after a
blizzard and after 12 hours of work developed a case of mono that lasted for
three months. i was never able to do my workout routine more than once every
week or two after that. In 2016 I got a job that required me to walk 13 miles
a day and lift 100 pounds. I got mono and switched to a job that just required
5 mins of work and 8 hours of staying awake. my case of mono lasted for a year
until i quit my job. it was devastating, i became frequently confused and
unable to understand language and lost over half of my physical strength. most
foods would induce pain that lasted days. I got better after I quit my job
with a treatment i found a doctor recommend online. since then ive sleep 16
hours a day and get sore throats if i spend too long on my feet. im frequently
sore and tired and unable to exercise. i could still beat your ass tho pussy."

------
mirimir
> There is no biomarker or blood test to establish diagnosis ...

So arguably there is no "CFS/ME". Arguably, there are many conditions that can
be diagnosed as "CFS/ME". And so it's not surprising that some patients
benefit from talk therapy. And that other patients won't, and will be insulted
by the very idea.

About being "silenced" by online activists, that's just the Internet working
as expected. Or at least, expected if you really thought it through.

~~~
beat
That's not how science works.

CFS/ME is a diagnosis based on real, observable behavior. The lack of a
scientific explanation for the cause doesn't mean there isn't a cause, and it
certainly doesn't mean the condition is not real. It means the cause has not
yet been isolated by repeatable experiment. (And yes, it's possible that there
are multiple conditions all diagnosed together as CFS/ME, and that some of
them are purely psychological. But it's also reasonable to assume that some or
all have a physical cause.)

Long ago, we didn't know about germs, and people believed diseases were caused
by sin (and arguably, some still do). Doesn't mean the diseases weren't as
real then as they are now that we know what causes them.

~~~
mirimir
I didn't say that some don't have a physical cause.

> CFS/ME is a diagnosis based on real, observable behavior.

That's not a meaningful diagnosis. It basically comes down to something like
"people who report this set of symptoms, and who don't test positive for
anything we know about". Medicine is full of this stuff. They used to just put
it in Latin. Because then it sounded like they knew what it was.

Doing reliable science with human subjects is _hard_. And when you don't
actually have a reliable test for something, it's impossible.

I'm not saying that any of these diseases diagnosed as CFS/ME aren't real. I'm
just arguing that it's hard to assess treatments when you have such a poorly
defined diagnosis.

