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GlenGrail

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  1. Thanks, Alex, these look like far better articles. The connection between CFS and POTS is also an interesting point.
  2. I don't know where the clip was set, but even in the US involuntary commitment laws tend to vary from state to state. In some states (Arizona, Nevada, and Iowa come to mind) the process is relatively easy, but still subject to a high burden of proof. In other countries, the laws vary even more. In Britain, patients can be committed for up to six months, though this depends upon the judgment of mental health professionals (a frightening idea, if you ask me). Holland has a robust system of involuntary commitment institutions; at any given time, between 1500 and 2000 persons are generally confined in these wards. Every year or two, they get a chance to appeal for release. If you go back even forty or fifty years, even in the US before some Supreme Court decisions, involuntary commitment was much more common and easier to achieve. The case narrated in the video sounds very similar to a famous CFS/ME case in Britain, perhaps around the 60's or 70's. A child paralyzed with ME was subjected to various barbarisms as the doctors tried to get him to reveal that his paralysis was simulated. He was almost drowned in a pool, in the belief that he was faking his condition and that he would eventually swim to avoid drowning. I forget the other tortures they put him through; I believe the psychiatrists left him in a chair for a long time, believing that he would get up to use the bathroom. He didn't, of course, and soiled himself. His wheelchair would be suddenly tipped forward; they expected that he would involuntarily put out his arms to catch himself. He didn't. Terrible stories, I'll try to track down the source. It sounds like the girl in the video experienced the same treatment; judging by the accents, that may have been in Britain around the same time.
  3. All right, I found the article. Unfortunately, I found it somewhat disappointing, and I suspect many of you will concur. I will summarize it at some length. First, it is quite a brief article--only about eight pages, one containing a bibliography and several others taken up by tables and ancillary matter. The author, judging from her other publications, is not primarily a POTS researcher, but a neuropsychologist. The description of POTS is drawn from standard sources dating from the early 1990's. POTS is defined as "a mild form of orthostatic palpitations." Considering that this appeared in a journal (a relatively marginal one) targeted at neuropsychologists, the few paragraphs that actually describe the condition are probably insufficient to inform a clinician not already familiar with it. On the other hand, the article does not seem to be targeted at a broad audience; judging by the view count, I was the second person to download it. So, on to the meat of it, which is where the problems appear. The article is structured as a case study of two sisters, 19 and 22, who both have POTS. While this case study may be interesting from a neuropsychological standpoint, it is, I think, almost entirely irrelevant as applied to POTS. The problem is that both of these patients have a number of comorbidities and complicating factors. Sister A has been diagnosed with bipolar disorder, severe depression, agoraphobia, social anxiety, and obsessive-compulsive tendencies. Both sisters have been previously diagnosed with ADHD (though, as the authors point out, it is possible that the attention deficits were caused by then-undiagnosed POTS). Both have a chronic pain syndrome; one of them uses narcotic analgesics daily. Sister B also has a complicated psychological history, including suicidal ideation, self-multilation, panic attacks, anorexia, and post-traumatic stress syndrome related to a sexual assault. As the abstract suggests, the full-scale IQ score is preserved in both sisters. One has quite a high score of 132, and the other has a very good score of 118. Each, however, shows a number of deficits in certain specific subtests. For the purposes of the article, a significant deficit was a subtest score more than 1.5 standard deviations (23 points or so) below the general FSIQ. By this measure, Ms. A had 16 scores significantly below FSIQ, and Ms. B had 10. The impairments were related to working memory, processing speed, visual memory and recognition, category fluency, and inhibition. The authors contend that this pattern is "suggestive of prefrontal cortical cerebral dysfunction." The immediate concern is the large number of comorbidities, and the associated psychiatric conditions. Not only does this create the impression that psychiatric conditions are regularly compresent with, or worse, inseparable from, POTS (which studies like Raj 2009 have shown is not the case), it means that the case studies chosen for the article are not representative of the general patient population. The specific cognitive problems that these sisters are experiencing could have other causes from POTS. Cognitive deficits, of course, are also associated with some of their psychiatric conditions and some of the medications they are taking. Again, this doesn't invalidate the case study by any means, but it does seem to limit its usefulness for commenting on POTS in general. In addition, the article does not spend much time describing the cognitive symptoms these women are experiencing. I had hoped for a fairly robust phenomenological account of what those cognitive symptoms are like, subjectively; this does not occur. One sister left college because she found it "too stressful"; the other left for the same reason, though she elaborates, "stressing about getting things done on time, being late with assignments, and then getting more stressed." These are understandable responses to cognitive difficulties, as far as it goes, but these are the only sentences in the article that actually describe the sisters' subjective and functional sense of their cognitive problems. And given the psychiatric components, this concern with stress could just as easily be attributed to anxiety. It seems extremely dangerous to equate cognitive dysfunction with stress. The authors are aware of these limitations. The conclusion notes that "the two individuals have comorbidities that complicate test interpretations." Specifically, the diagnosis of ADHD, the presence of treated hypothyroidism, and the anxiety and affective disorders really muddy the waters in these cases. It is impossible to say which deficits are attributable to other causes and which arise from the POTS. In fact, the specific cases of POTS are not discussed at all: it is not mentioned what form of POTS the sisters have, how they were diagnosed, how severe their symptoms are, etc. Some of this seems like extremely basic footwork, and I can't help but thinking that the authors should have covered these bases more thoroughly. It is an interesting article, but these problems make it unsuitable for drawing any conclusions. Anyone looking for enlightenment regarding their own cognitive symptoms (which was my hope) will probably be disappointed. At worst, the article will suggest to uninformed readers that POTS is intimately bound up with psychological problems. On the bright side, I think Vanderbilt is working on an extended study of cognitive dysfunction in a more homogeneous set of patients, and their results ought to be a little more meaningful.
  4. I found a library nearby that apparently has access, so hopefully I should be able to get ahold of it in a couple of days. Very much looking forward to it, since this is the only publication I know of that specifically addresses cognitive dysfunction and POTS. The research on brain fog and CFS is helpful, but it's hard to know to what extent it applies to POTS, especially considering that the relationship between these two conditions is not entirely clear.
  5. I do have access to the journal, but I'm afraid my online access is delayed by a year, so that's not much help. I might request it through interlibrary loan; it looks like a fascinating article. Cognitive dysfunction is definitely my most frustrating problem, and anything that can start to shed some light on it is welcome. Plus it's nice to see that, even in the abstract, the authors acknowledge that the cognitive symptoms can be severe, even when they don't necessarily match up with objective tests.
  6. Hello. I'm new to the forums. I'll introduce myself here before too long, but I thought I'd start out by mentioning one of the single most useful devices I've found for living with my POTS. One of my biggest problems is cognitive dysfunction and mental clouding, and I often find that I can barely read or write when sitting up. Lying down helps a little bit, if not as much as I would like, so I use these: http://www.amazon.com/Reizen-Prism-Bed-Spectacles/dp/B003I7HOF6/ref=sr_1_3?ie=UTF8&qid=1372460657&sr=8-3&keywords=supine+reading+glasses Best $18 I ever spent. I spend at least five or six hours a day reading, when I can, and these were a lifesaver. I also have a more involved bookholder that sort of hovers above a bed or recliner, but it was much more expensive, and these work great most of the time. You can stand the book up on your chest and lie down flat, and the prisms in the glasses shift your vision sixty or seventy degrees downward. They take some getting used to, but it's brilliant for anyone who does a lot of reading and has worse cognitive symptoms sitting up. I use them at least a couple hours a day. Some people use them for watching TV also. There are some different brands and things, these are just the ones I happened upon after I googled "supine reading glasses" on a lark and discovered that, as usual, some inventive German had already come up with them. Now if they could just make glasses that see through brain fog, I would be able to read in peace. Hope this helps somebody.
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