It’s time for doctors to apologise to their ME patients
telegraph.co.uk
telegraph.co.uk
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.
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.
Teasing out cause and effect for patients like this must be a nightmare.
If there's a commonality of failure to understand and control very large systems with very complicated feedback loops, maybe improvement in that area might simultaneously lead to better solutions in all those problem areas. Given enough progress, even Economics might rise past the level of mere astrology and PR.
What could a startup do? Well, crazy as it sounds, systems analysis as a service, maybe? There are already MOOC companies maybe they could offer graduate level classes in control theory. Maybe startups working in giant feedback filled systems like cloud-whatever would make general progress in the field as part of getting their specific system to stabilize. I'm guessing any possible progress would be a side effect of those companies. For direct applications maybe real time augmented reality feedback, somehow.
Certainly mental health, like physical health, is not binary and being sick and unhappy is certainly worse than being equally sick and slightly more happy, or at least more content. In that way the possibilities for startups related to the problem expand. A startup focused on teaching meditation. Or a startup to do biofeedback to increase pain tolerance. A startup to increase feeling of community, assuming the community would be positive and assuming the victims are not feeling introverted.
On the one hand: I found, after 10 years, that dry air on mountaintops really helped me, so we moved from the Netherlands to Munich for a dryer climate. It turns out that my joints ache from humid air, the pain makes the muscles stiff, that makes me so tired. Also sleeping did not help, because I get only stiff and sweaty in the wrong climate. In Munich I could finally go to the gym every day to get in better shape. Now I live in the Netherlands again with a huge airco and infra-red heating system in de ceiling. I get healthy with one click on a button now.
On the other hand: There is a study showing that cancer patients that have CFS recover after chemo also from CFS. I had chemo and recovered very well indeed. This indicates that the immune system is involved.
So, I only know now what works best for my personal case. Everything else stays a big question mark.
Since there are a lot of different patient groups taken together under the name of CFS, so it is not clear if my solution will help more people. That's also why there is not one cure for all. There is not one cure for all these different groups, there are a lot of cures, yet to be found, for all these groups. It is best to search for your own 'painkiller', it's for now the only way. This is very hard while being ill in the first place, with all the other worries that come along with chronicle illness. I am glad that I just kept on trying to find a solution, also when all others lost faith (only my husband kept believing in me getting better) and not let others force the idea of me being a 'lazy psychological patient' upon me. I wish you all strength and fortune in your quest for a healthy feeling body.
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.
This is contradictory. Perhaps you just mean doctors should be more open minded?
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
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.
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.
NICE - National Institute for Health Care Excellence http://www.nice.org.uk/
PACE - http://www.wolfson.qmul.ac.uk/current-projects/pace-trial
All the rest are expanded in the text.
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.
A Sudden Illness - http://www.newyorker.com/magazine/2003/07/07/a-sudden-illnes...
Sincerely yours, software developer.
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.
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.
ME is not a psychological problem.
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."
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]
Surgery?
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.
Who's left to apologize and to whom would they apologize? It's not like "doctor" is a hereditary title or anything. Doctors today have little to do with what happened then, other than being able to view what happened and observe the consequences to learn from it.