Whats happening in MS patients?

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Re: Whats happening in MS patients?

Postby Izawwlgood » Sat Jan 17, 2015 2:40 am UTC

So what qetzal said, also everything else that was said... wheres the citation for ETX mimicking MS? all the other stuff???

Your MO of ignoring a bunch of criticisms to your unsupported claims has no place in a science subforum. This is the third thread we've now seen you play this game.
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Re: Whats happening in MS patients?

Postby addams » Sat Jan 17, 2015 6:08 am UTC

I have a quick question.
Has this Thread lost its Original Poster?

It seems we are being less than useless in addressing the issue brought forward.
Maybe we should Vote this Thread into serious discussions of MS or Death.

Serious discussions about MS are Work.
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Re: Whats happening in MS patients?

Postby Angua » Sat Jan 17, 2015 9:53 am UTC

skolnick1 wrote:
Izawwlgood wrote:[this would mean that all patients would have Clostridium infections.

All patients have Clostridium infections; it's impossible to properly metabolize indole compounds without certain Clostridia. I believe it's passed down in breastmilk.

It's not an infection it's having commensal bacteria.

And you wouldn't get Clostridium from breast milk, but we do pick it up from the birth canal in the mother (and all the poo) but by about 6 months the gut flora for babies born by c-section or vaginal births has normalised. The spores are pretty ubiquitous for Clostridia.

Not sure about the indole thing so a citation would be nice (this does not mean I am doubting you on this one point). It seems hard to track down. Mainly because I'm interested because the microbiome does help with our metabolism, which makes sense given how impossible it is to go through daily life without gaining one just by breathing (travelling to another country for a month or so is enough to change your commensals so people who've gone, say, to India for a bit might have antibiotic resistant bacteria for quite a few months after returning), it doesn't really matter to the overall point at hand. I've got one paper looking at indole metabolism in rat liver cells, and another saying that some clostridia can process indoles, but C perfringens is indole negative. I mean, I'm pretty sure that everyone has would have commensal Clostridium of some sort or the other just because they're everywhere, I'll give you that much.

But I'm not going to give you the claims that doxycycline helped MS via eradicating Clostridia (too small a dose, and I'm not sure how efffective it would be for that purpose)or that immunosuppressant therapy was increasing the immune system against it, or that BEAM therapy before STEM cell transplant worked by killing off Clostridium. I'm also still pretty skeptical about this toxin as well, but mainly because there only seems to be one study in mice and I'm not sure how they were introducing this toxin (and to what levels, etc). Having toxins and animal models that mimic diseases is a long tradition in medicine, and while they can be helpful in figuring out treatments, they do not necessarily mean that the underlying cause is identical.
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Re: Whats happening in MS patients?

Postby BlackSails » Sun Jan 18, 2015 1:39 pm UTC

I have peered into the future, and divined skolnick's next thread.
Hey guys, I found this bacteria that has similar symptoms to appendicitis! Look at those crazy surgeons, removing appendixes from people who just have an infection!!!!!! All they need is some willow extract and they would be fine but BIG PHARMA wants your appendixes. Maybe they use it for stem cell research?

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Re: Whats happening in MS patients?

Postby addams » Sun Jan 18, 2015 3:06 pm UTC

Gack...
There is so much wrong with the quoted statement.

BlackSails;
Can you make an anti-inflammatory, anti-coagulant, with mild pain relieving properties out of just any old Willow?

I know I can, using the Local Willow.
That is some foul tasting stuff.

Do those Big Tree Willows have the same chemical in that layer under their bark?
I don't feel like studying Clostrium and obviously, neither do you.

Spoiler:
Some of those toxins are fatal in very low concentration.
The most common one has no taste, no smell and will boil off, easily.

Some food are treated like they have Botulinum, because they might.
It's not a boogie man. It boils off. Cook your food.
C. botulinum can produce botulinum toxin in food or wounds and can cause botulism.[5] Honey sometimes contains spores of C. botulinum, which may cause infant botulism in humans one year old and younger. The toxin eventually paralyzes the infant's breathing muscles.[6] Adults and older children can eat honey safely, because Clostridium species do not compete well with the other rapidly growing bacteria present in the gastrointestinal tract. This same toxin is known as "Botox" and is used cosmetically to paralyze facial muscles to reduce the signs of aging; it also has numerous therapeutic uses.

What are Botox's Therapeutic Uses?


We could chat about plants with Therapeutic value.

Foxglove is another one.
It doesn't taste as bad as Willow.

I'm glad aspirin comes in a nearly tasteless solid.
Are you ever glad for that?
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Re: Whats happening in MS patients?

Postby HungryHobo » Mon Jan 19, 2015 1:13 pm UTC

BlackSails wrote:I have peered into the future, and divined skolnick's next thread.
Hey guys, I found this bacteria that has similar symptoms to appendicitis! Look at those crazy surgeons, removing appendixes from people who just have an infection!!!!!! All they need is some willow extract and they would be fine but BIG PHARMA wants your appendixes. Maybe they use it for stem cell research?


Hey guys! I found this wavelength of light which is actually in total control of all tissue healing! Look at those crazy doctors who think there are such things as "infections" and "scar tissue", obviously they just need to re-align the bio-light-field!

Hey guys!I just figured out the nature of time!
If you would acknowledge simple existing math proof that 4 harmonic corner days rotate simultaneously around squared equator and cubed Earth, proving 4 Days!
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Re: Whats happening in MS patients?

Postby gmalivuk » Mon Jan 19, 2015 6:42 pm UTC

How about no more posts from or about skolnick1 in this thread.

If the OP comes back, respond with real science about multiple sclerosis.
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Re: Whats happening in MS patients?

Postby Izawwlgood » Tue Jan 27, 2015 8:28 pm UTC

Came across this while reading up on neurodegeneration.New therapy avenue.

NAD+ enzyme has a few effects on the immune system, notably stimulating the production of two immunosuppressive cytokines. It also affects the differentiation of CD4+ T-Cells, the immune cells responsible for attacking myelin.
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Re: Whats happening in MS patients?

Postby EMTP » Thu Feb 05, 2015 4:51 am UTC

So, multiple sclerosis.

MS is an autoimmune disease. Which is to say that the immune system, which is generally scary good at distinguishing self from non-self, makes a mistake and starts turning its guns on its own tissues.

This happens (speaking teleologically) because it's incredibly important for the immune system to immediately recognize and powerfully attack not-self. So evolution is walking a thin line between an immune system that is too lackadaisical and one that harms the organism it is trying to protect (depending on your fluency with American popular culture, you may wish to visualize the immune system in autoimmune disease as a screaming Jack Nicholson proclaiming "You want me on that wall! You need me on that wall!")

Many therapies in autoimmune disease involve quieting the immune system, which has obvious risks. Fortunately, there are several therapies for MS which are more specific, such as interferon and natalizumab, considered "immune modulators" in contrast to "immunosupressives" like steroids (though the latter can be lifesaving and should not be shunned; all medical therapies have benefits and downsides.)

MS is a lively area of research, and affects many (wealthy) people, so there is fortunately no danger of it becoming an "orphan disease."

Like many autoimmune diseases, MS resists classification and it is not uncommon for a particular patient's illness to look like a combination of elements of several autoimmune diseases. Even MS proper has a number of subtypes: relapsing-remitting, secondary progressive (SPMS), primary progressive (PPMS), progressive relapsing. The clinical course can range from mild which stays mild to devastating.

MS is a terrifying illness because it is incurable, unpredictable in its course, and involves functions that are very important to our sense of personal integrity and selfhood; eyesight, motor functions, mood and thinking, to name just a few.

The loss of control is felt acutely by patients and families. Everyone has a different way of dealing with it. Part of your way is to learn more about the disease and the treatment; there is nothing wrong with that. I advise you to bear in mind a few things, however. One, knowing more about the disease will not cure your girlfriend and will not bring the situation under your control. Two, the person with the disease "owns" the disease. She is the quarterback and you need to let her call the plays. Particularly when they are already feeling a loss of control with the disease, people do not respond well to pressure to deal with that disease someone else's way.

Three, it is very hard to be a source of medical knowledge and a family member at the same time. Even for medical professionals, we have to remember what "role" we are in. When my wife is sick, I strive to be her husband, not her doctor. Remember that your girlfriend has many doctors, but only one boyfriend, and the love and support she needs from you she can't get anywhere else. Love and support are a lot more useful to someone sick than another medical opinion. Learn for the comfort it gives you, and give of yourself what only you can give.
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Re: Whats happening in MS patients?

Postby addams » Thu Feb 05, 2015 4:57 am UTC

That was so level headed and reasonable. (bows)
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Re: Whats happening in MS patients?

Postby skolnick1 » Thu Feb 05, 2015 9:14 am UTC

Spoiler:
addams wrote:That was so level headed and reasonable. (bows)

Seconded. I'd like to apologize for the premature speculation and thank EMTP for contributing the answer that OP was most likely looking for.
I'll stick to suggetions rather than assertions, and let the studies speak for themselves.
http://www.ncbi.nlm.nih.gov/pubmed/21920946

And since some of you were asking:
http://www.ncbi.nlm.nih.gov/pubmed/19234110


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Re: Whats happening in MS patients?

Postby Izawwlgood » Thu Feb 05, 2015 1:30 pm UTC

Sigh, round we go again. Instead of just dropping two articles you think 'speak for themselves', you should explain what you think they are supporting.

One is a correlation paper that tentatively suggests, among a few other possibilities, that, as you've been claiming, underlying infections may contribute to MS.

The other is a study of gut microflora and their metabolites, and aside from including the Clostridium bacteria you are so enamored with, has nothing to do with Multiple Sclerosis. In fact, Multiple Sclerosis is not even mentioned in the second paper. No one is disputing that some microfauna are required for metabolism.
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Re: Whats happening in MS patients?

Postby vbkid » Thu Feb 05, 2015 4:50 pm UTC

In regards to the 2nd one, is it actually possible the poster is confusing MS (Mass Spectrometry) in the text with Multiple Sclerosis? I really hope I'm wrong.
Edit: But I also kind of hope I'm right.

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Re: Whats happening in MS patients?

Postby Izawwlgood » Thu Feb 05, 2015 4:59 pm UTC

vbkid wrote:In regards to the 2nd one, is it actually possible the poster is confusing MS (Mass Spectrometry) in the text with Multiple Sclerosis? I really hope I'm wrong.
Edit: But I also kind of hope I'm right.

That was why I wanted to clarify that the second one has nothing to do with MS (aside from including mention of Clostridium). I believe you are correct - MS is a reference to Mass Spec, not Multiple Sclerosis.
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Re: Whats happening in MS patients?

Postby gmalivuk » Thu Feb 05, 2015 8:27 pm UTC

gmalivuk wrote:How about no more posts from or about skolnick1 in this thread.
I'm not going to repeat myself again.
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Re: Whats happening in MS patients?

Postby HungryHobo » Fri Feb 06, 2015 12:22 pm UTC

EMTP wrote:Everyone has a different way of dealing with it. Part of your way is to learn more about the disease and the treatment; there is nothing wrong with that. I advise you to bear in mind a few things, however. One, knowing more about the disease will not cure your girlfriend and will not bring the situation under your control. Two, the person with the disease "owns" the disease. She is the quarterback and you need to let her call the plays. Particularly when they are already feeling a loss of control with the disease, people do not respond well to pressure to deal with that disease someone else's way.


It's exceedingly important that at least one person in the family does take the "learn about it" approach seriously.

When there's a devastating diagnosis there's no shortage of scum who will try to prey on the desperate, on those who want to believe in miracle cures or in claims that the disease isn't real more than anything else in this world.

There will be friends, probably even family members who, honestly trying to help, will tell you about amazing people, treatments and magic their friends friend told them about. A crystal healer in Brazil, homoeopaths in Nepal or "stem cell therapy" in China.

There will be "Clinics" which provide guides on how to fundraise in your local community to send your loved one to their overseas "Treatment Centres" where all that's waiting for them is a hole drilled in the skull with a black n decker and a vial of "stem cells" poured in. (real case)

There will be people who will happily take your loved one to a very very expensive spa, try to convince them to stop taking their meds and they will make a great show of how it's all about "toxins" or really caused by the meds, with made-up "lab reports" showing "toxin levels" and they'll make a great show of how their treatments are removing the "toxins" from your loved ones body

And you will want to believe in these things so so much because they'll be offering cures and hope.

There's a very strong chance that your loved one or people close to them will fall for one or more of these and it'll feel like they're not in touch with reality, they'll want to re-mortgage the house to try some suicidal treatment or buy magic crystals and spend money you'll probably need for their care later, it's human, but they'll come back eventually. Unfortunately it's some part of the grieving process for some people.

Unfortunately I am speaking from experience on some of these points and things I've witnessed on other points.

Families need at least one person who is capable of understanding the difference between real treatments and woo.
At least until I get my way and all the worlds woo-pedalling predatory magic men are rounded up and murdered painfully.
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Re: Whats happening in MS patients?

Postby qetzal » Sat Feb 07, 2015 2:14 am UTC

A 1000 time this ^^^. Very well said, HungryHobo. I hope the OP drops by again to read it.

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Re: Whats happening in MS patients?

Postby EMTP » Sat Feb 07, 2015 5:26 am UTC

There's a very easy way to tell the difference between real treatments and woo. Real treatments will be prescribed by physicians and supervised by qualified providers. The rest is woo. If you have a question about which is which, ask your doctor. Very simple, no expertise required.
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Re: Whats happening in MS patients?

Postby gmalivuk » Sat Feb 07, 2015 5:00 pm UTC

Yes, because no doctor has ever fallen for some pseudoscientific bullshit, ever.
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Re: Whats happening in MS patients?

Postby Izawwlgood » Sat Feb 07, 2015 5:06 pm UTC

Granted, but this is why getting another professional second opinion is a good way of ensuring you aren't getting the advice of a snake oil peddler. Medical professionals make mistakes, obviously, though the institution of medical professionals is the best we have, the best we can do. The value of a layperson reading up on the subject matter is that they may be better able to detect woo, and better able to recognize when seeking a second opinion is a must.
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Re: Whats happening in MS patients?

Postby EMTP » Wed Feb 11, 2015 5:17 am UTC

gmalivuk wrote:Yes, because no doctor has ever fallen for some pseudoscientific bullshit, ever.


So either all auto mechanics are always right, or you should try to make yourself a auto repair expert and second-guess them?

No one is perfect. The question is who is more likely to be right. Thinking you can out-research and out-skeptic a highly trained specialist in their own specialty is not how people protect themselves from woo; it's how people fall prey to woo in the first place.
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Re: Whats happening in MS patients?

Postby HungryHobo » Wed Feb 11, 2015 10:23 am UTC

Unfortunately this world also contains lazy small-town doctors who don't care.
Or local doctors who just are utterly unfamiliar with particular conditions.

It can very very much be worth having a couple of family members who know if there's some promising trials starting or, at the most basic level, know when to ignore the local GP and take the sick person to a hospital with more competent doctors.

I know enough people who've had to bypass their local GP (a lot of GP's are surprisingly thick) and go to a specialist.

My SO's GP kept telling her it was "growing pains" and to "stop whinging" while bones were necrotising in her wrist.
My best friend, again, kept getting told "growing pains" by a different GP while suffering from a serious autoimmune problem.
Or my cousin who, again, kept getting told "growing pains" by yet another GP and turned out to be bleeding internally.

basically fuck any doctor who ever blames things on "growing pains".
It seems to be the go to when they're too full of themselves to just say "I don't know" that they can use on anyone under 20.

All, luckily, had someone in the family who knew enough to say "fuck off" to "wisdom" like EMTP's advice and to seek out more competent doctors.

You don't need to be an expert but you need to know enough to know when your mechanic is inept, lazy or just scamming you.
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Re: Whats happening in MS patients?

Postby Quercus » Wed Feb 11, 2015 10:54 am UTC

EMTP wrote:So either all auto mechanics are always right, or you should try to make yourself a auto repair expert and second-guess them?


Well, no, but sticking with the analogy, it's worth knowing a few basic things about how a car works so you can detect when a mechanic is trying to rip you off and go to another garage.

I've had the situation of a family member (in a fairly time critical scenario) being told by one doctor "you must do x now" and by another doctor "don't do x, x is a really bad idea". In this case it was exceedingly helpful to be able to read some Cochrane reviews and standard of care guidelines and say "ah, so doctor A is worried about a,b and c, so he's recommending x, whereas doctor B is worried about d, e and f happening if you do x". My family member was then able to make an informed decision based on which risks they were more willing to tolerate.

I've also been prescribed treatment that ceased to be standard of care 15 years ago and had a doctor look up medication dosage on wikipedia in front of me.

You're never going to be able to acquire the same level of expertise as a doctor - but you can learn enough to "sanity check" what a doctor is telling you. Basically I go by NHS care pathways (as I'm in the UK) and Cochrane systematic reviews. If anything concerns me I discuss it with the doctor and if they don't address my concerns I find another doctor.

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Re: Whats happening in MS patients?

Postby gmalivuk » Wed Feb 11, 2015 1:13 pm UTC

The same way some doctors apparently use "growing pains" as a catchall for young people's symptoms, I know people whose doctors encouraged or at least never discouraged what turned out to be joint-ruining exercise regimens for people who were obese in addition to having some more severe underlying condition. They judged that losing weight was an absolute good thing and so didn't bother checking to see if the way the person was losing weight might be unhealthy itself.

Basically, while doctors may have more overall knowledge about medicine in general, they may not have a deeper understanding of your own particular case. Also being a doctor isn't the same as being a scientist or being exceptionally good at critical thinking and woo detection.
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Re: Whats happening in MS patients?

Postby HungryHobo » Wed Feb 11, 2015 1:23 pm UTC

gmalivuk wrote:Basically, while doctors may have more overall knowledge about medicine in general, they may not have a deeper understanding of your own particular case. Also being a doctor isn't the same as being a scientist or being exceptionally good at critical thinking and woo detection.


Or reading research papers.

42% of doctors can correctly answer a true-false question on p-values! That’s only 8% worse than a coin flip!


http://slatestarcodex.com/2013/12/17/st ... an-chance/
http://www.jgme.org/doi/pdf/10.4300/JGME-D-12-00161.1

and no, it's not a trick question:


‘‘True or False: The P value is the probability that the null hypothsis is correct.’’

(The correct answer is false. The P value is the probability of obtaining a test statistic at least as extreme as the one
that was actually observed, assuming that the null hypothesis is true.)


63% (2980 of 4713) rated their overall statistical literacy training as adequate


We assessed whether ability was associated with quality
of training. Those who answered the positive predictive
value question correctly rated their training significantly
less adequate compared with examinees who answered it incorrectly




So if you're even vaguely stats-aware it can be worth your time double checking things to make sure they've not misread things.
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Re: Whats happening in MS patients?

Postby EMTP » Wed Feb 11, 2015 5:11 pm UTC

gmalivuk wrote:The same way some doctors apparently use "growing pains" as a catchall for young people's symptoms, I know people whose doctors encouraged or at least never discouraged what turned out to be joint-ruining exercise regimens for people who were obese in addition to having some more severe underlying condition. They judged that losing weight was an absolute good thing and so didn't bother checking to see if the way the person was losing weight might be unhealthy itself.

Basically, while doctors may have more overall knowledge about medicine in general, they may not have a deeper understanding of your own particular case. Also being a doctor isn't the same as being a scientist or being exceptionally good at critical thinking and woo detection.


Unfortunately the self-description of "being exceptionally good at critical thinking" exactly describes the self-estimate of people who fall for woo.

I am all for being an informed patient and asking intelligent and skeptical questions. But you don't need expertise for that. I don't know what sort of work you do but I would be curious how helpful you think it is for a client to spend a few hours with Google and then set themselves the task of policing your presumed incompetence.

As to "a deeper understanding or your particular case" that's a valuable thing. But again, you don't need expertise for that. If you can come to me knowing the medications you take, and the doses you are taking them at, and what your symptoms are, and when and how they started, you are providing more useful information than >95% of my clients can (granted, I work in an urban emergency room, so I work with a lot of challenged folks.)

I don't want to discourage anyone from learning about medicine. I've dedicated my life to the study of medicine; I like talking about it with people. I like questions; I like talking about what you Googled before you came in.

What I object to is the notion that you must become an expert on your/your family member's illness, to police the medical system and prevent mistakes. I think that that adversarial and confrontational attitude is not only unnecessary, but will lead to worse care rather than better, not because doctors will do worse but because the people who set themselves up as uber-skeptical patients often refuse things they really need, demand diagnostics and treatments that they don't need and are not good for them, and succumb to the temptation to doctor-shop and treat themselves.
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Re: Whats happening in MS patients?

Postby HungryHobo » Wed Feb 11, 2015 5:29 pm UTC

EMTP wrote: to police the medical system and prevent mistakes.


Where would writing "NO! OTHER LEG! NO!" in permanent black marker on the leg that isn't supposed to be amputated fall on this scale....

My mother always reads her charts and double checks everything she's been proscribed because junior doctors tend to, well, not and thus miss the "allergic to" notes. If she didn't do this as standard she'd likely not have lived past my 4th birthday.

Failing to police doctors work yourself can lead to acute cases of death.

Don't get me wrong: some of the family are in healthcare and I understand what a pain in the arse people can be when they get bolshy but people being able to do basic error checking covers your ass as well preserving theirs.
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Re: Whats happening in MS patients?

Postby Quercus » Wed Feb 11, 2015 6:14 pm UTC

There's a balance to be struck here I think. Of course a doctor will usually have a much greater breadth of experience and knowledge than a patient, and of course the optimal scenario is for everyone to work together rather than be confrontational. The "uber-skeptical" patient you are describing I would say is an example of doing skepticism badly.

I like the Russian proverb that translates as "trust, but verify" in this scenario. I want to know what dosage the formulary recommends for all my medications, and I want to know what dosage they are actually being given at, because I know how easily order-of-magnitude errors can creep in despite all the precautions that are taken. An extra pair of eyes is never a bad thing. It's not that I don't trust the doctor, it's that I recognise that doctors are human and that therefore they occasionally make mistakes. If I play an active part in my care those mistakes are less likely to happen, and that's good for both me and my doctors.

Oh, and I know how difficult the classic "uber-skeptical" patient is for doctors, and I don't want to be that guy, which is why most of my doctors will never even know that I'm quietly checking the things they tell me.

I'm a biomedical scientist, so I guess it's significantly easier for me to do some of the sorts of things I'm talking about than it is for most people, but It really doesn't require any technical expertise to check dosages or verify that the care you are being given matches the published standard of care for your diagnosis. If it doesn't then ask politely for clarification, rather than doing anything adversarial.

EMTP wrote:I don't know what sort of work you do but I would be curious how helpful you think it is for a client to spend a few hours with Google and then set themselves the task of policing your presumed incompetence.


In general terms, that would be most unhelpful, but if, say, an undergraduate student points out that I've missed a step off my lab protocol, or that I've used 10x instead of 1x buffer, then that's enormously helpful, and I would thank them.

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Re: Whats happening in MS patients?

Postby EMTP » Wed Feb 11, 2015 6:46 pm UTC

I think that sort of checking is very helpful. And obviously it's much easier when your own expertise is in a related field. To Hobo's point, no one is talking about not knowing your own allergies. That's called knowing your own basic health information.

That to me seems very different than believing that it is necessary to your safety to learn enough about medicine to police your providers on issues of disease management. That's not practical with your car mechanic or your plumber, and it's not practical with your doctor either. You hire an expert to know something you don't, and do something you can't. Your energy is better spent finding a good and trustworthy expert rather than trying to be that expert yourself.

Incidentally some of the worst patients for this are nurses and doctors. Even when you have the knowledge, applying it to your own case is fraught with peril. You're just too close to it. When I go to my PCP, while I can't shut off my own analytic faculty, I do my best to let him be the doctor and to trust the judgement of the person I chose to care for me.
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Re: Whats happening in MS patients?

Postby gmalivuk » Thu Feb 12, 2015 12:06 am UTC

EMTP wrote:Your energy is better spent finding a good and trustworthy expert rather than trying to be that expert yourself.
Yes, and knowing you've found a good and trustworthy expert requires some work and knowledge on your part.

No one's saying you need a med-school-level knowledge of disease management, but "knowing your own basic health information" includes knowing a fair amount about diseases you have, wouldn't you say?
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Re: Whats happening in MS patients?

Postby EMTP » Fri Feb 13, 2015 6:25 pm UTC

gmalivuk wrote:
EMTP wrote:Your energy is better spent finding a good and trustworthy expert rather than trying to be that expert yourself.
Yes, and knowing you've found a good and trustworthy expert requires some work and knowledge on your part.

No one's saying you need a med-school-level knowledge of disease management, but "knowing your own basic health information" includes knowing a fair amount about diseases you have, wouldn't you say?


It's a good thing to learn about the conditions that you have. Virtually any medical visit is going to have a chunk of time devoted to teaching you about a condition you have or may have. Obviously, if you want to augment that with your own research, that's great.

The particular scenario that was posed above was that without a family member studying the disease, the patient and family will be vulnerable to woo. What I am saying is twofold:

A) That a far easier way to avoid woo and pseudoscience is to stick with allopathic professionals, who certainly may err, but aren't likely to "provide guides on how to fundraise in your local community to send your loved one to their overseas "Treatment Centres" where all that's waiting for them is a hole drilled in the skull with a black n decker and a vial of "stem cells" poured in."

B) Paradoxically, deciding that there are scammers all around you and that you are going to become a self-taught expert on subject X, and thereby be better prepared than the gullible or corrupt "experts" with their "standard of care" is exactly how the origin story of a woo victim goes.

Naturally the people on these fora are very bright and skeptical and would not fall for anything like that. But some people do. I love medicine and I encourage everybody to learn about it, and especially to learn about it as it pertains to their own health. I would just recommend not approaching it with the attitude that you must do it to keep the medical system from taking advantage of you.
"Reasonable – that is, human – men will always be capable of compromise, but men who have dehumanized themselves by becoming the blind worshipers of an idea or an ideal are fanatics whose devotion to abstractions makes them the enemies of life."
-- Alan Watts, "The Way of Zen"

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Re: Whats happening in MS patients?

Postby Quercus » Fri Feb 13, 2015 7:17 pm UTC

EMTP wrote:Virtually any medical visit is going to have a chunk of time devoted to teaching you about a condition you have or may have. Obviously, if you want to augment that with your own research, that's great.


Okay, I think we might have hit where our experiences differ here. Guess how long a GP* appointment is in the UK? It's 10 minutes (we have a bit of a healthcare crisis going on here at the moment). Once you've gone through the history, the exam and how to take any prescription that leaves approximately no time for teaching people about their condition. Obviously GP's can extend the time a bit, but they're under considerable pressure not to, as if they do, they start to run behind, fewer patients get seen and waiting times increase. Obviously the situation is different if you are referred to a specialist, but for conditions that are managed by a GP you'll get a couple of minutes maximum of explanation, and sometime not even that.

If I want any knowledge of my health beyond "you have x, take y for two weeks, if you don't feel better come back" I usually have to find it out for myself. Apart from that difference I'm in total agreement with you.

*That's the UK equivalent of a PCP

Edit: Sorry, I think this post might have come off as a bit snarky - I'm annoyed at the UK healthcare system, not anyone in this thread.


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