
It’s time for doctors to apologise to their ME patients - bloke_zero
http://www.telegraph.co.uk/news/health/12033810/Its-time-for-doctors-to-apologise-to-their-ME-patients.html
======
empressplay
I've suffered with ME / FM for 25 years and it's my firm opinion there are no
clean hands in this debate. Doctors, frustrated by an ability to find a
conventional diagnosis and thus treatment for their patients, want to try to
blame it on psychology. Sufferers, afraid of losing access to medication, or
simply due to their own negative opinion of psychological conditions, insist
vehemently that their ills have no relation to mental health at all.

Of course, the truth probably lies somewhere in the middle. ME / CFS most
certainly encourages depression in those who suffer from it (both physically
and mentally), and depression leads to behaviour (such as spending daylight
hours indoors, engaging in minimal activity, poor eating habits) that
aggravate ME / CFS symptoms and lead to a downward spiral. The best treatment
currently available addresses both the physical symptoms and the mental
fallout, and it's my firm belief that therapy and CBT is integral to managing
ME / CFS, at the very least to allow sufferers the best quality of life they
can have under the circumstances.

~~~
davak
MD here. I agree with this completely. I will also add that Chronic Fatigue
Syndrome is unlikely one disease although we are not smart enough yet to know
to divide them more specifically.

I've "fixed" cases like this by diagnosing and treating rare rheumatological
and sleep disorders. However, most patients clearly have psych or personality
disorders. Is the mental illness a cause or effect?

It's my job not to give up and blow off patients. Just realize that there is a
ton about medicine that is unknown still--we are scientists searching for
answers too.

~~~
pja
Sleep disorders are notorious for bringing on mental problems as well,
including (but not limited to) severe depression. Meanwhile depression can
cause sleep issues all by itself.

Teasing out cause and effect for patients like this must be a nightmare.

------
tudorw
I'm excited about lots of research that is breaking down the 'separate mind &
body' delusion that seems to have gripped medicine for the last couple of
hundred years. Doctors could perhaps do more to embrace the scientific method,
an inability to measure something is not proof it does not exist.

There also seems to be institutional resentment of any patient that does not
respond to a prescribed treatment, as if it was a personal failure to respond
in the way they imagined. I have direct experience of the treatment of
patients, as empressplay puts it, there are no clean hands.

One particularly shocking consultant came up with a treatment plan, when I
enquired whether we would see them again to evaluate the outcome he was quite
specific that it was not of interest, as the 'expert' there was nothing more
to learn. I patronised the chap by outlining in a step by step manner how in
my industry we integrate a program of continuous review in order to determine
the effectiveness of the solutions we implement, but no, his belief was so
strongly held, the actual experience of the patient was of no interest.

~~~
robbiep
__Doctors could perhaps do more to embrace the scientific method, an inability
to measure something is not proof it does not exist. __

This is contradictory. Perhaps you just mean doctors should be more open
minded?

~~~
marcosdumay
Not contradictory. But yes, for some definitions of the scientific method,
open-mindness is a different concept that does not take part in it. I'd just
like to point that those definitions do not work. Being open minded is a
requirement for creating good science, as much as checking one's hypothesis
with experiments.

About that "contradiction" word, do not confuse "inability to measure
something" with "measuring something and detecting it's not there". Those are
too completely different situations, yet many people act like they were the
same.

~~~
msandford
> About that "contradiction" word, do not confuse "inability to measure
> something" with "measuring something and detecting it's not there". Those
> are too completely different situations, yet many people act like they were
> the same.

I'm reminded of Semmelweis who figured out an empirical germ theory and beat
Pasteur to it by about a decade. Thanks to doctors who "knew" better, he ended
up dying in disgrace.

[https://en.wikipedia.org/wiki/Ignaz_Semmelweis](https://en.wikipedia.org/wiki/Ignaz_Semmelweis)

That's not to say I'm anti-doctor, anti-medicine or anything like that. But I
am anti-arrogance, especially when people's lives might hang in the balance.

------
cant_kant
This article was written by "Dr Charles Shepherd medical adviser to the ME
Association" and is not entirely unbiased.

~~~
tonyedgecombe
What biases would someone from the ME Association have other than wanting to
be able to treat the condition?

~~~
DanBC
Total and utter rejection of any possibility that some cases of ME could be
helped (even a little bit) with a psychological therapy.

~~~
cpncrunch
This mindset is unfortunate, and detrimental to patients. There have been a
lot of studies on CBT/GET, and there isn't really any doubt that they are
moderately effective. The only issue I have with the treatments is that the
theories behind them (deconditioning and abnormal illness beliefs) don't
really have any evidence. I suspect they work for other reasons. However, that
shouldn't be a reason to completely reject them.

I was speaking to someone recently who recovered from CFS (after being mostly
bed-bound) through CBT and lifestyle changes, and she is now completely
recovered. In her case there were a lot of recent traumatic experiences which
contributed to her illness, so CBT was very helpful in addressing those
issues.

Some charities, such as Action 4 ME, seem a little more open-minded about CBT.

------
jrapdx3
Discussion of conditions with certain attributes always seems to be a can of
worms. By _attributes_ I mean characteristics such as highly variable or
difficult to describe symptoms, association with anxiety, depression, pain and
other "subjective" states, and where the patient's state crosses over poorly
defined boundaries of "mental" and "physical" domains.

As commented by tudorw, an issue is "mind-body dualism", a philosophy often
associated with Descartes. Dualistic belief is not exactly delusional, but
certainly it's not in accord with contemporary scientific work. The problem
stems from our modern materialistic disregard for the immaterial mind vs.
esteeming the tangible body. Dualism remains a principle source of stigma
against acceptance of conditions involving difficulties integrating emotion,
thought and action.

Adopting a scientific approach is assuredly optimum for health professionals,
but given dualism is the predominant view in Western societies, the
prescription to replace dualism with monism gets little uptake. The problem as
it exists among physicians only mirrors the broader culture, it must change in
both subsets to have any effect at all.

As I recall the myth of "objective reality" has been discussed many times on
HN. "Embracing the scientific method" is more problem than solution in this
context. That is, equating science with a distorted version of objectivity is
a basis for the trouble dealing with FM, et. al., in the first place.

In a way, exposure to the class of illnesses like FM evokes responses somewhat
like we'd expect on first hearing about quantum physics. It's confusing to
people, it doesn't compute, doesn't make sense, doesn't follow the rules we
are used to. Mind == body? Wait a second, you mean there literally is no
_mind_? When we're ready for that, then and only then will we begin to make
progress.

------
Wistar
One of the most unusual and, frankly disturbing, accounts of the onset of an
illness that I have ever read is by author Laura Hillenbrand about her falling
ill with CFS/ME. Alas, it is now behind a paywall at New Yorker.

A Sudden Illness - [http://www.newyorker.com/magazine/2003/07/07/a-sudden-
illnes...](http://www.newyorker.com/magazine/2003/07/07/a-sudden-illness)

------
rdancer
The comments are even more interesting than the article.

~~~
cpncrunch
The comments are always like that for CFS articles. The only difference with
this one is that there appear to be a couple of people trying to introduce
some scientific sanity, whereas normally it's just the "CFS is physical, any
other suggestion is heresy" crowd. Best avoided.

------
exo762
I wonder when software developers of the world will apologise for systematic
under-evaluation of time required to finish the project, failing projects,
state of end-point security, software patents.

Sincerely yours, software developer.

~~~
mcherm
I've been trying, for years.

That, in my opinion, is one of the main objectives I have in using "agile
development". Instead of looking over a project and providing the business
with an inaccurate estimate of how long it will take, I offer the business a
rough relative sizing of different features, and real-time insight into the
pace at which we are progressing. Then the customer can form their own
opinions on whether the next feature is "worth it" or not, and what to do if
the project appears not to be meeting its objectives.

You also raised issues of end-point security: a very valid point I have no
answer for. And you raise software patents, but there I think your concern is
misplaced: as far as I can tell, software developers of the world have been
quite vocal in explaining the harm done by software patents -- but the legal
and legislative communities do not seem to be listening.

~~~
exo762
Yeah, we do what we can, as good as we can.

But I'm imagining that medical community also tries their best to a) push
state of knowledge forward b) safely apply known best practices while curing
patients, thus acting in patients best interest. This two goals are compatible
in long term and conflict in short term: you can't really apply experimental
treatments or "experimental diagnosis" to patients outside of research
programs, even in case when it could potentially be in patients best interest.
Do authors expect researchers to push boundaries faster or maybe they expect
practitioners to apply unchecked knowledge?

Article tone and title are, in my opinion, very unreasonable.

------
PhantomGremlin
Is there a more arrogant profession (collectively) than medicine? From the
article, a mere 60 years later:

    
    
       ME is not a psychological problem.
    

And a wish:

    
    
       Jose Montoya, professor of medicine at the
       University of Stanford, said: “I have a wish
       and a dream that medical and scientific
       societies will apologise to their ME patients."
    

Any bets on if and when that apology will happen? Have doctors ever even
apologized for bloodletting? E.g. they killed George Washington:

    
    
       By the time the three physicians finished their
       treatments and bloodletting of the President,
       there had been a massive volume of blood loss—half
       or more of his total blood content was removed
       over the course of just a few hours.[1]
    

[1]
[https://en.wikipedia.org/wiki/George_washington#Death](https://en.wikipedia.org/wiki/George_washington#Death)

~~~
jnbiche
> Is there a more arrogant profession (collectively) than medicine?

Surgery?

~~~
cheez
Oh god.

I was playing hockey a few weeks back with some new guys and at the end of the
games, we started shooting the shit. I asked the goalie what he did for work:
"I'm a doctor". "Oh cool, my brother is a doctor as well."

"Where?"

"<some hospital>"

"Oh, I work there as well. What department?"

"<the department>"

"Oh, haha, I'm a surgeon"

I lost it laughing.

~~~
knughit
I don't get it.

~~~
cheez
There is a hierarchy among medical professionals. I just couldn't help
laughing at the way this guy said "oh, haha, I'm a surgeon."

