The Frying Pan

no, you're going off on a tangent

you nearly got it earlier

Is there such a thing as a glacier cap? Because an ice cap is a thing.

There is other stuff in the mountains, but I'm not sure how much of it is capped

saddle cap, peak cap, ridge cap... none of it makes sense or has the right amount of letters.

you just said the answer

OH GOD

it's not 7, 3, it's 6, 3

i'm so sorry (－‸ლ)

lol

doesn't matter, because I wouldn't have recognized it

is saddle cap a thing?

8:59 AM

peaked cap!

oh!

is this a set phrase, like "slouchy hat"?

I have a meeting.

yes

ok, have a good one!

@Stephie morning

9:15 AM

OK, back here

hi

it was the daily scrum, so it is short on purpose

i see

ready for another clue to get the brain juices flowing? :D

an easy one: Musical effect that's a lot more shaky [7]

trellato?

no, that wouldn't be word play

it's not always word play

9:23 AM

is there a twister in music?

this quite a clever clue actually

whenever you see a word like 'shaky' or 'muddled' or 'crazy' or anything like that, it's a sign there's an anagram involved

as always, there is always a literal clue at the beginning or end as well

so in this case we are looking for a musical effect

musical effects tend to come from Latin, so probably the sh will be separated in the anagram, not the English sound...

generally speaking, the word that signifies the clue is an anagram is not involved in the anagram

the number of letters in the answer is a good clue - look for a word 7 letters long in the clue, or words that combined make 7 letters

Um. So "musical effect" is not in the anagram because it's the literal clue, and "shaky" is not in the anagram, leaves "lot more"

tremolo

yay!

ok, another

See, ice does melt [7]

9:29 AM

iceberg?

it is ice in the sea, and it melts when going south

nope

you're being too literal :)

remember, the literal clue is always there at the beginning or end

so if it is "see", maybe it is the observation of some liquefying process

no, that would still be too litteral

indeed

these things are great for training your lateral thinking

you have to think of every sense of the word 'see'

then recall what I said earlier about words involving change, muddling etc

oh, so "melt" is also an anagram clue?

yup

9:37 AM

I am coming up with nonsense like "ecoside"

have you considered the religious sense?

hi guys

@Jolenealaska hey you

there is a religious sense of "see"?

the place in which a cathedral church stands, identified as the seat of authority of a bishop or archbishop.

9:39 AM

diocese

bingo!

what does it have to do with seeing?

The Holy See

@rumtscho nothing to do with seeing

seeing wasn't mentioned, see was :)

and what is the difference between see and seeing?

9:40 AM

seeing is the act of being visually aware of something

see is the place in which a cathedral church stands, identified as the seat of authority of a bishop or archbishop.

in this case :)

that's the point

I never heard of that

it deliberately tries to mislead you with the common definition of 'see'

@rumtscho well, they're a test of vocabulary as much as anything

now you have heard of it :)

LOL

You people crack me up

English is probably the only language you can do cryptic crosswords in, thanks to all the misguggling of words and definitions

Want to talk about something less fun?

Google Lemtrada

9:46 AM

antibody for an autoimmune disease?

ms medicine?

AKA alemtuzumab

ah, an immune system targeting antibody

yes

> Mab)Campath was withdrawn from the markets in the US and Europe in 2012 to prepare for a higher-priced relaunch of Lemtrada aimed at multiple sclerosis

a now common tactic in pharmacy :(

9:48 AM

I've been doing monthly infusions, but am insidiously getting worse.

This stuff is different from what I have been taking.

> insidiously getting worse

do you mean you're switching from relapsing to progressive form?

@rumtscho I am still considered relapsing remitting

I probably won't be for long

That makes the decision to take this drug a timely issue.

I read recently about stem cell treatments working wonders for MS

shame these things take so long to trickle into common use

all the literature on it is very new

I see a proposal for a safety trial - from 2016

oh, there is something in Cochrane

I would much rather do stem cell treatment than this, but in the US stem cell treatment is pretty much only used in extremely bad cases.

It's a little bit frightening.

9:54 AM

drive.google.com/open?id=0B9eU5-sqE0zmNU5tdmlobEQxX2c

I have to leave in 5 minutes to meet colleagues for lunch, I didn't have the time to read through the thing before posting it

Over five days I would be given a drug that would pretty much completely wipe out my immune system.

A year later, I would repeat it at a somewhat lower dose.

Then never again.

a higher sustained disease progression-free survival (HR 0.33, 95% CI 0.16 to 0.69; one study; 221
participants);

That sounds great

My doctor pretty clearly wants me to do it.

do the lemtrada, not the stem cell, right?

Stem cell is not an option for me, lemtrada is.

9:58 AM

the effects sound very good from that abstract, I don't see side effects in the abstract though

I am going to lunch, see you later

The side effects are pretty nasty, at least during the treatment,

CYA

what are the side effects?

The cost of it is about $200,000. Considering that my monthly infusion is $12,000 a month, the lemtrada is actually a savings assuming I would live over about a year and half.

@ElendilTheTall think hard-core chemo

The list is extremely long, but nothing is common that I couldn't handle.

It doesn't mention hair falling out, but other than that, it reads like chemo warnings.

If I do it, I'm going to cook about a pound of pot into chocolate truffles.

hmm

what's the chance of it being effective?

The chance is pretty good. All of the literature comparing efficacy between the lemtrada and what I am on now favor the lemtrada.

There is no long-term data, since the drug is fairly new.

10:14 AM

well, I guess you have little choice anyway

temporary discomfort with improvement in MS symptoms versus the inevitable permanent effects of MS

For a time I would be as helpless as a full-blown AIDS patient as far as my immunity. That's a bit frightening, I would have to actually follow my own advice regarding food safety.

crikey

the very thought

:)

I think the plan is to keep me in the hospital for about a week, just before and after the treatment.

I am a shitty patient.

Nurses get an earful every time I eat hospital food.

I'm pretty sure they don't actually make it.

I'm going to check out their Wi-Fi situation carefully.

If the Wi-Fi sucks, I will buy about 10G to use as a portable hotspot.

@Jolenealaska eeek, what am I missing?

@Stephie I am considering a very scary but possibly very efficacious treatment for my MS.

10:29 AM

Oh.

Basically, it's like undergoing hard-core chemo. For some time after, I will have virtually no immune system.

Who came up with the idea?

user208178

hi

My doctor is gently pushing it.

Hi Arrowfar!

user208178

Hi Jojo. what happened? are you okay?

10:32 AM

I'm fine, I'm just considering a new MS treatment.

user208178

I couldn't understand the technical medical language above.

user208178

I see.

user208178

well my prayers are with you.

@Jolenealaska, I have hardly any time now, but let me google a bit more tonight, ok?

@Stephie I would appreciate as many eyes on the literature as I can get.

Thank you

For what it is worth, I am currently on Tysabri.

The monthly infusions are pain in the ass, but the side effects are minimal.

At most I'm just tired for a couple of days.

user208178

10:41 AM

these days I have been questioning myself. I think I have been following the wrong ideology.

deep

user208178

hi elendil

o/

user208178

yeah

user208178

everyone hates muslims and I'm one. It is tough to live like that. I hate to live like that.

user208178

10:46 AM

you know, if weren't for my family I would have committed suicide a long time ago.

good grief dude

firstly, every one doesn't hate muslims

I certainly don't

secondly, you live in a muslim country. how much anti-muslim sentiment are you exposed to?

@Arrowfar if you feel a style of living / belief / value system doesn't fit (any longer), you should think hard about how you want to live and how to acchieve it. Suicide isn't a solution, it's the cowardly way out in like 99% of all cases.

I would gently push anyone following any organized religion to actually think about it, but people who "hate Muslims" are idiots.

10:51 AM

And education is a first step. Learn as much as you can to make good own decisions.

@Arrowfar "everyone" should be wary of all kinds of fundamentalist thinking. I personally don't care what deity (or none) anyone believes in. As long as all follow a "live and let live" credo, there is absolutely no reason not to get along just fine.

In short, the most dangerous groups are those who have either a too strict moral compass - or none at all.

@Arrowfar, still here?

user208178

yes.

good.

11:12 AM

@Jolenealaska did you read the paper in the link I posted?

This is the best quality research information you will be able to find

and it's not chemo

chemo is an indiscriminate poison, it kills anything fast-growing in your body, including hair follicles, stomach lining, etc.

This is an antibody, it only kills your immune system cells

which is still ugly, but only a fraction of what chemo does

Do you know if you are seropositive for something nasty?

Mononucleosis, herpes of any kind, maybe even something parvo related from your vet time?

because if yes, that stuff would break out with vengeance

but the effects sound very promising. Some of the best established treatments in medicine have confidence intervals which straddle the "does something" point

of course, the low number of studies is problematic here

but CI of 0.41 to 0.60 is really, really good

@rumtscho I was just reading it now. I knew that wasn't chemo, I believe I only said it was "like chemo", from the perspective of the patient. At any rate, I would really like to see something that compares the efficacy of this drug versus Tysabri, the drug that I'm on.

It's unlikely that you will get much comparisons with such early drugs, but let's see

user208178

@Stephie yes it is cowardly but peaceful way out I believe.

user208178

@ElendilTheTall you are right, it is cool but everywhere we go we get the additional screening if we have a beard etc. and look young and IS material :)

user208178

Also these days it is getting tougher. I mean I always think about going to west but man, the stories I hear about young guys travelling or working there and the bias and discrimination they face, it is terrible. Not all I know, many are happy but still it looks like the ideology is making us look bad nothing more.

11:24 AM

@Arrowfar I seriously doubt the "peaceful" part...

pn.bmj.com/content/early/2016/04/25/…

@Jolenealaska can you read this one or is it behind a paywall?

@rumtscho paywalled.

user208178

@Stephie yeah. so about "too strict moral compass" there are many people like that here. And they are harsh. It is no fun. I avoid such people here. It is depressing you know.

user208178

Here it is always "Don't do this" "Don't do that" from family and teachers etc. I'm sick of it.

drive.google.com/open?id=0B9eU5-sqE0zmVE1SdUtkemQ0MzQ

11:30 AM

Got it, thanks.

natalizumab is your current drug, alemtuzumab your new one

fabulous TY

it considers a very specific case though, I have no idea how you can find out if you have this one virus

on the other hand, I would assume that even if you don't have it, the worst that can happen to you will be no worse than what happens to the people who have it, and I think this paper should describe all problems

I am actually routinely tested for that virus.

I don't have it.

@Arrowfar toxic people are everywhere. Even the "free" western world has it's limitations.

11:35 AM

like people who nitpick the misuse of it's

=)=)=)=ᕕ( ᐛ )ᕗ

LOL

@rumtscho I'm still very interested in reading this study. I'll be able to pick out relevant snippets.

@ElendilTheTall note that I will be in your country soon. I might be tempted to cosh you with an apostrophe - I have some left.

cadth.ca/sites/default/files/pdf/…

is this paywalled or reachable?

@Stephie I'm surprised given how liberally you scatter them about the place

ᕕ( ᐛ )ᕗ

@rumtscho I have been serio-tested (sp?) for just about every damn thing...

@rumtscho YOU ROCK!

:)

user208178

11:42 AM

okay, thanks for letting me rant and not kicking me out. much appreciated.

looks like there are no studies directly comparing one antibody versus another

user208178

well, idle mind is a devil's workshop, I think ever since I quit my old job I have been like this. I should get myself busy with something fun again.

but

> There was considerable agreement between direct and indirect evidence for the outcome of
ARR. Based on the NMA, alemtuzumab and natalizumab had the greatest activity, reducing
the ARR by approximately 70% compared with placebo

so both seem to be quite effective

and with complex diseases, "if one of the good drugs doesn't work, switch to the next" is generally a good option

@ElendilTheTall buy one, get one free....

@Stephie how is your grandmother doing?

11:46 AM

I should find a chat room with people who have or will take the new drug.

@ElendilTheTall Grammar check the last line?

I've heard there are facebook groups for such stuff - I've met people with rare diseases who gather there to exchange experiences

ugh

That's probably where I would find it

user208178

I hope you feel better soon enough @Jolenealaska.

user208178

so I'm not taking part in your discussion because it is going over my head lol

Thank you @Arrowfar, but I'm really not feeling bad, I'm just considering a new drug for a disease I have had for a very long time.

user208178

11:49 AM

ah I see

user208178

good luck! :)

Thank you :-)

@rumtscho reasonably well, thanks. Diagnosis still a bit unclear, but she at least can express herself again and is only slightly muddled.

@Jolenealaska I'll send you another document in the next days

I don't have online access, I ordered it by document delivery

sciencedirect.com/science/article/pii/S0037196316300282

@Stephie Glad to hear she's recovering!

@rumtscho again, you rock :)

user208178

11:53 AM

rumi talks like a doctor.

I'm doing what I can - I know what it is like to choose between treatments with uncertain effects :(

@Arrowfar making my time with her very valuable :-)

user208178

yep :)

also, I might be doing a difficult job for little money with no fast track at career success, but when I get some perks, I'm using them! (such as journal access)

@Arrowfar all it takes is reading enough medical literature. Then you soak up the language.

She talks over my head too, but just like with the studies, I can figure her out after a bit of Googling.

11:55 AM

Oops... I didn't realize.

Just a little stuff :-)

Yes, a finger puppet show would be much appreciated

It only takes a few keystrokes to be right on board

"Here is nasty Ms. MS! booo!"

"And here is Dr Stem Cell! Yay!"

@ElendilTheTall You have a very quick wit, Sir.

11:58 AM

well, if you can't take your chronic disease with a pinch of black humor, you are really in dire straits.

@Jolenealaska <bows> one must take what one can get

:-)

Hey guys!

user208178

hello Cindy. how are you?

Good, and you?

user208178

12:06 PM

I'm ok.

@Cindy hi

@ElendilTheTall Hey there!

user208178

I was just getting depressed because life for muslims is hard these days.

user208178

almost everyone hates them.

hyperbole

12:09 PM

I wouldn't say that.

user208178

yah sorry, I'm becoming a negative nancy I think :)

There are those who class everyone in a particular group the same. Most people know that there are both good and bad in every race, religion, occupation, etc. Any group you can name. Those who let a few bad eggs taint their view of any entire group are idiots. (Unless the group is ISIS. Then they're all bad eggs.)

user208178

sorry for ruining the chat experience guys but I am getting depressed.

user208178

So if my family found out about my plans they would have me tied to a bed in a psychiatric ward.

user208178

also suicide is illegal here.

user208178

12:18 PM

I think I should stop acting like a weirdo. See ya.

user208178

Laters.