So, the team that I’m seeing at Brigham & Women’s in Boston has a testing protocol called invasive cardiopulmonary exercise testing or iCPET, which involves putting a tube into a large vein in the neck, putting a heart catheterization through that, then putting a tube in an artery in the wrist. This allows monitoring and comparison of blood pressures inside the heart vs. outside the heart as well as comparison sampling of arterial blood vs. venous blood. In addition to this, they apply EKG heart monitoring and respiratory monitoring via a gadget you hold in your mouth and breathe through. With all this insanity in place, they put you on an exercise bike until you can’t stand it anymore.
What they find on this test is a combination of two things. First, the pressures inside the ventricles of the heart do not increase in response to increased physical activity the way that they should. “Low ventricular filling pressure caused by preload failure.” And second, the DEoxygenated blood returning to the heart has too much oxygen in it, indicating poor oxygen uptake on a cellular level, which they hypothesize is caused by mitochondrial problems.
The treatments include a drug called pyridostygmine, which increases acetylcholine neurotransmitter to increase autonomic nervous system response to physical activity (and therefore increase blood return to the heart). Or a drug called midodrine, which also supports blood pressure. Plus supplements to support mitochondrial function like CoQ10, creatine, and ALCAR.
I’m not cured and back to where I was prior to getting sick by any means, but I’m able to hold down a full time job, which prior to treatment I most definitely would not have been able to.
Thank you very much for your answer. Very interesting therapies they are testing and I’ll have a look if there are similar studies done here in Germany. I wish you all the best for your future and really hope, that they will find a way to completely treat it.
Thanks for the well wishes. Also last year I participated in a clinical trial with this same team at the Brigham. The drug trialed there is called bocidelpar. It targets a mitochondrial receptor called PPAR-δ. We’re still waiting on the results of that trial to be released and it’s probably a good 3-5 years away from FDA approval in the US if all goes well. So here’s hoping for the best
That’s not a very uplifting comment. But to clarify, we don’t have the old disposable ones here anymore. You can still buy a 20p harder wearing plastic bag at the checkout with the intention that it’s reused, handy when you’ve popped in unexpectedly but most people are taking their own now.
Funny, I was just thinking about posting this, even though it’s like ten years old! For anyone who’d like to read more on this topic from the article’s author, have a look here (PDF).
This op/ed is heavy with claims and light on proof. Is it anything more than an advert for the author’s book? It seems reactionary for no reason.
A car drives over a bridge, and the bridge collapses. What does the news media focus on? The car. The person in the car. Where he came from. Where he planned to go. How he experienced the crash (if he survived). But that is all irrelevant. What’s relevant? The structural stability of the bridge.
Yes. Humans are fragile and we need to make sure they are not in danger before we then – later – investigate the engineering components. Is there news out there that does not worry about the stability of bridges after such events? The same goes for earthquakes, floods, and the like. First we worry about survivability, and later we look at what engineering worked and which failed.
I also see no need for news to be consumed as unquestionable gospel. The state of U.S. politics has led me to believe that yes, in fact, there are people who DO take it that way, but I know enough people who question beyond the sound bites to think that the author here is overstating the idea that consuming news reduces critical thinking. I do, however, suspect that it is harder to concentrate on heavily linked article than ones that save references for the end.
Anyone try to click the link to the study on how ‘links are bad’ – the link is BAD. I got a 404 (perhaps it is a regional issue?). By cutting out the chunk, ‘magazine/’, I got a working link: www.wired.com/2010/05/ff-nicholas-carr/
Replying to myself: the last time the news mattered in my daily life was this week when I considered flying to Fairbanks, Alaska and discovered that prices are significantly higher than a year ago. I suspect the hike relates to the grounding of planes as seen from that video of the door plug failure and the FAAs subsequent grounding of that type of plane (and possibly a second type now, but last I heard that was not yet a hard grounding, but only inspection). This gives me a general idea that perhaps prices will drop when the planes are back in service and I’m better off waiting until then.
The car and bridge one, is an example of “human interest” news, which some reporters, and news channels, try very hard to push for (“after seeing your son ripped to shreds and your husband fall into a volcano… tell us, how did that make you feel?”). Call me a monster, but I don’t care about that. Or rather, I already know that they’ll feel devastated, no need to rub it in.
Is there news out there that does not worry about the stability of bridges after such events?
Unfortunately, yes. There are whole news channels which, as soon as they get done with one emotional trigger news, they switch to the next one.
The article is oversensationalized, but it does hide a grain of truth: avoid that kind of sources, and you’ll be better off.
I still read the news and argue about it with people on the internet, which is what I’m recommending against doing. Don’t be me. Live your life. I’m seriously not sure I’m more off “informed” than if I were to just draw furry erotica all day.
For me, the key question is, What does being up to date help you? And my answer, as someone that is constantly up to date, is that it doesn’t.
(US Here) Even my more progressive friends won’t go downtown because every business doesn’t have free dedicated parking. Street parking is free for the first hour and when I still drove I had lunch with no problems that way 1000 times, but nope unless where they’re going has it’s own dedicated parking lot, they aren’t going.
I encourage anyone who cares about this to travel to Afghanistan themselves and see it with their own eyes before relying on what publications like the Guardian have to say about it. One thing about the article that is probably not true is the claim that the girls were labeled “infidels” by the state. Why this claim is suspicious is that there is no word for “infidel” in the languages spoken in Afghanistan. The closest equivalent would be کافر (kafir), which can refer to someone who isn’t Muslim, but not wearing hijab is not considered to be any kind of proof that someone is not a Muslim. It’s highly doubtful that they were excommunicated for this.
The guardian claims that the government in Afghanistan mandates that women must be covered “from head to toe, revealing only their eyes”, which is clearly not true. When I was in Kabul I saw many women without their faces covered. This is one clear case where the Guardian gets facts on the ground wrong. A lot of women there are wearing surgical masks as a form of face covering that also doubles as protection from pollution and disease. As the girl quoted in the article said, they are doing this as a “precaution”, in other words, the government doesn’t in fact require face covering, but they are doing it anyway because they think they have to.
The article implies that girls were specifically targeted for going to English class, as if they have an issue with learning English. Government officials themselves also go to English classes, so that in and of itself was not a relevant matter to the story.
As for them getting beaten for “confronting the men”, of course you are going to get beaten if you resist arrest or argue. That’s true in most countries, but particularly in Afghanistan the authorities tend to hit people if they are not compliant.
The other issue is that the rule in Afghanistan is not well developed or consolidated, which means that these men who committed these acts like the beatings and arrests were acting outside the law, and the central government doesn’t necessarily support this action. Because of the rudimentary form of government different local elements of the Taliban can act differently or independently, so what the spokesperson quoted in the article said about this being unusual was probably telling the truth. This was only one incident, and hopefully it won’t be repeated elsewhere.
As for them getting beaten for “confronting the men”, of course you are going to get beaten if you resist arrest or argue. That’s true in most countries, but particularly in Afghanistan the authorities tend to hit people if they are not compliant.
Your whole post was already getting into a questionable defense of Afghanistan’s bullshit, but then you start defending police brutality and violence against women as something that is “true in most countries”? You’ve already lost me and probably most of the community here.
This was only one incident, and hopefully it won’t be repeated elsewhere.
Such incidents happen often in Afghanistan, and mostly against women. The central government bans girls from education, just to name another example.
There is another article by CBS quoting representatives of the central government:
Zabihullah Mujahid, the Taliban regime’s chief spokesperson, confirmed the arrests to CBS News on Monday, saying “a group of women who were involved in modeling to promote clothes were detained, advised in front of their family members […]
The person said that after several hours of searching [for a woman detained by the Taliban], the family found the woman at a local police station late Tuesday evening, where Taliban officials demanded money, along with her passport and other documentation, as a penalty and “to guarantee that she will not violate the dress code in the future.”
The family member said the authorities told the family they would “take her biometrics and photos, and if she violates the dress code in the future, she will be imprisoned for a longer period.”
Recent arrests of women in Kabul Afghanistan for ‘bad hijab’, confirmed by the Taliban, regrettably signified further restrictions on women’s freedom of expression and undermines other rights,” [United Nations special envoy for Afghanistan] Bennett said in a social media post.
You start off strong then move straight to supporting the fucking Taliban, as if that’s a reasonable position to take.
I agree, the article is likely highly sensationalized, but let’s be clear the Taliban are a piece of shit government with extremely regressive and repressive views. Maybe this shit doesn’t happen in Kabul, but Kabul seems bad enough that women can only show their faces and most are even too afraid to do that. That shows you that it’s a TERRIBLE place to start with even in the best places. Unfortunately many people don’t live in Kabul and it seems that the government isn’t going to do anything to stop regional authorities from abusing their power and any young woman they can get their hands on.
Don’t travel to Afghanistan. Every dollar that goes to Afghanistan supports religious oppression.
theguardian.com
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