This one is a good book.
Julie Rehmeyer, a mathematician and science writer, chronicles how chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) crept up on her until her entire life had vanished and she was frequently completely paralyzed. While she desperately tried to find a treatment, she instead encountered an array of quacks, snake oil salesmen, nice but useless therapists, nice but useless doctors, a patients’ community full of apparent crackpots, and medical literature claiming that it was a mental illness caused by, essentially, being lazy and whiny.
In desperation, Rehmeyer finally starts listening to some of the apparent crackpots… and when she applies her scientific training to their ideas, she finds that stripped of the bizarre terminology and excessive exclamation points, they sound surprisingly plausible. With her entire life at a dead end and nothing left to lose, she reluctantly decides to try a treatment which is both radical and distinctly woo-woo sounding.
And it works.
But unlike every other “How I cured/treated my illness by some weird method” memoir, the story doesn’t end there. Instead, she not only researches and theorizes about how and why it might have worked, she interviews scientists and doctors, and even arranges to do a double-blind experiment on herself to see if it’s a real cause of her symptoms or the placebo effect. I cannot applaud this too much. (I was unsurprised to find that every article I read on her book had a comment section claiming that her results were due to the placebo effect.)
Lots of people have suggested that I write about my own horrendous illness, crowd-sourced treatment, and jaw-dropping parade of asshole doctors who told me I was lying, a hypochondriac, or crazy. While you’re waiting… read this book instead. Though it’s not the same disease and she was treated WAY better by doctors, a lot of her experience with being beaten over the head with bad science and diagnoses based purely on sexism was very similar. As is much of her righteous rage. I am way more ragey and less accepting than she is. But still. It’s similar.
Overall, this is a well-written and honest memoir that shines a welcome light on a poorly-understood illness. Rehmeyer's perspective as a science writer provides for clarity, justifiable anger, and humor as she takes apart the morass of bad science, victim-blaming, and snake oil that surrounds chronic fatigue syndrome. It's informative without being dry, easy to read and hard to put down.
Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand
This involved a certain amount of faff and hassle about making sure we were buying the right kind of ticket for the train which would also give us free rides on public transport, ascertaining which platform the train in the right direction left from, etc etc. And then when we arrived a) finding the right stop for the tram b) missing the stop we wanted and being carried on to a point we didn't want.
Except it turned out to be right around the corner from Hundertwasser's Waldspirale apartment block, which was on the list of things to see.
After which we wandered down in the direction of the Schloss (which can only be seen by way of guided tours, we passed) and had what was a rather more leisurely lunch than we had intended at the Altes Rathaus before going to the Hessische Landesmuseum, based on the collections of the Grand Dukes, which has some nice stuff.
We then went out to Mathildenhöhe, which was where the artists of the Jugendstil Art Nouveau movement hung out. This includes a Russian Orthodox Church (not particularly Art Nouveau) and the Hochzeitsturm, Marriage Tower, which looks as if it might be the HQ of one of those somewhat spooky early C20th New Agey cults that crop up in mysteries of the period, and a rather small museum (but I think part of it was closed) of furniture and objects created by the artists of the colony.
And then back to Frankfurt, whence we flew home today.
And in other news, spotted this in today's Guardian: the strange world of book thefts:
“We caught a gent last Christmas with £400-worth of stolen books in his trousers and elsewhere.... As we showed him the door he told us: ‘I hope you’ll consider this in the Žižekian spirit, as a radical reappropriation of knowledge.’”As an anarchist friend of a friend remarked when his car was nicked, 'Property is theft: but so is theft theft'.
Having a weekend with partner in Frankfurt.
Hotel perhaps overdoing the stylish minimalism: why does this always mean, nowhere to put stuff in the bathroom? However, good marks for the breakfast buffet.
On matters of modern design, am I the only person who finds themself waving their hands at a tap that turns on some other way, and vice versa?
Today to the Stadel- art gallery, very good stuff and lots of it. Among works observed, one C16th courtesan as Flora, with obligatory symbolickal bubbie displayed.
Also to the Arts and Crafts Museum, which has gone full-on poncey and eschews labeling in favour of composing curatorial 'constellations'. Though I could have spent more time with the shiny pillow-like balloons that one was permitted even exhorted to touch. (Sometimes I am shallow and frivolous.)
Some general flaneurserie, looking into churches, etc.
Re the current hoohah about Boots the chemist charging well over the odds for the morning after pill, I was going to comment - when posting the link on various bits of social media, to go 'and Edwin Brooks must be spinning in his grave!'
Brooks was the MP who put through the sometimes overlooked but significant 1966 Family Planning Act: as discussed in that post I did some while back on 'why birth control is free under the NHS'.
However, I discovered from googling that - as far as one can tell from The Usual Sources - Brooks is still alive, but moved to Australia. I am profoundly shocked that the Wikipedia entry, under his political achievements, doesn't include that act. We wonder if, in the long history of reproductive rights, it got overshadowed by the more controversial 1967 Abortion Act, or, by the final incorporation of contraception into the NHS in 1974. If I had time on my hands (which at this moment I don't) I would go and try and edit that entry.
*I think this is a quotation from someone? but I can't find a source.
Except some of it doesn't seem to be, o hai, I am now making an effort, it is more that various academic things (seminars, conferences, etc) that I had flagged up in my diary ages ago finally came up and were all within the space of a few weeks, I don't know, it's the 'like buses' phenomenon. And some of them I did do some social interaction at and others I just slipped in and out, more or less.
Have booked up, what I was havering about, the annual conference in one of my spheres of interest that I was usually wont to go to but have missed the (I think) last two because I was not inspired by the overall theme that year. And it's not so much that I'm not inspired by this year's theme, it's more 'didn't they do something very similar a few years ago and I did a paper then, and don't really have anything new to say on the subject', so I didn't do that, but I think that it would be a useful one to go to to try and get me back into the groove for that thing that the editor at esteemed academic press was suggesting I might write and talk to people (if I can remember how to do that thing) and hear what's going on, and so on.
Also had a get-together with former line manager, which between the two of us and our commitments involves a lot of forward planning, but it was very nice to do it.
Have also done some (long) and (a bit less) outstanding life admin stuff, which I both feel pleased about and also as if I haven't actually done anything, which is weird.
Did I mention, getting revised article off last week, just before deadline? and then got out of office email from the editor saying away until end of month. WHUT. The peeves were in uproar.
And generally, I am still working out what I do with the day when it does not begin with posting an episode of Clorinda's memoirs and go on with compiling the next one. Okay, there are still snippets to come, but they come slowly.
What I read
Melisande Byrd His Lordship Takes a Bride: Regency Menage Romance (2015), very short, did what it says on the tin, pretty low stakes, even the nasty suitor who molests the female protag in a carriage (the Regency version of Not Safe In Taxis) just disappears. The style was not egregiously anachronistic (apart from one or two American spellings) but a bit bland.
Janet Malcolm, Forty-One False Starts: Essays on Artists and Writers (2013) - charity shop find. Some of the essays were of more interest to me than others, but all very well-written.
On the go
Matt Houlbrook, Prince of Tricksters: The Incredible True Story of Netley Lucas, Gentleman Crook (2016). I depose that somebody whose scams got rumbled and who was banged up in various institutions for his crimes is not exactly trickster royalty. He then went allegedly straight and got into journalism, partly writing up the inside stories of the crime world, but these are very much complicated by the author as to their authenticity and did he actually write them. While he was more of a career criminal than the opportunistic upperclass louts in the McLaren book mentioned last week, he did have claims to gentility, but again, so not Raffles The Amateur Cracksman.
I'm currently a bit bogged down in it, which may be a reflection of the author's own experiences in trying to write about somebody who lived by lying, had numerous false identities, etc etc (which are very much foregrounded).
Simon R Green, Moonbreaker (2017) - came out this week, I succumbed.
Also started one of the books for review.
There's a new Catherine Fox out tomorrow (allegedly)...
How about, not?
Do we not get the impression that he has a very halcyon vision of what working on the land might involve? I suspect that there are not enough lovely organic farms practising biodynamic agricultural methods to take up anything like the numbers of intending students there are each year and a lot of them would end up working in agribusiness enterprises (which I suppose might be a salutory awakening, or not).
Also, would not much of the work be seasonal? What would they do the rest of the time?
Might there not be objections from the local communities?
I also think of the lack of amenities in many rural parts, e.g. no or inadequate public transport: in the evenings, not in the least worn-out from hours of back-breaking toil for poverty wages, maybe they'll gather round and sing folk songs and dance traditional folk dances and practice folk crafts?
And actually, I don't think this is true:
We also know that without contact with nature we will not form an attachment, we will not learn to love it.
See the rise of the notion of the healing powers of nature and the pastoral way of life in Britain as the society became increasingly urbanised, and therefore romanticised the supposedly more simple and harmonious existence of country life.
I have a feeling that people who live close to nature know exactly how dreadful nature can be. Tetanus! Anthrax! entirely natural.
Doesn't say how long this charmer has been running a business, if you can call it that, but what I should have liked to have seen would have been a face-off between him and Driff Field, author of successive editions (last in 1995) of the idiosyncratic Driff's Guide to All The Secondhand and Antiquarian Bookshops in Britain (these are probably still worth reading if you ever come across copies, even though the information on actual bookshops is presumably waaaay out of date):
Hugely successful for its wit and wide coverage of the field, the guide was nonetheless chaotic, idiosyncratic and often sarcastic, with entries such as: "the b[oo]ks are slowly transforming themselves back into rags"; "judging by body temp, shop seems to have expired in 1930"; "I could smell a bargain, pity was I had a cold that day"; "owner has been unwell recently with bad back (possibly caused by turning on the customers once too often)".or at least how Driff would have written him up.
Yet another paean to the 'return' of the physical book and the allure of the bookshelves: My bookshelf says who I am – and a Kindle cannot do that.
Well, that depends whether your bookshelves do say who you are - mine, I depose, say 'I am large, I contain multitudes' - and whether you want this revealed to any casual observer - though I daresay anyone wishing to decode oursin from her bookshelves would have to be in and out of several rooms and up and down staircases.
(Also, of course, we may not have physical shelves to browse but we have our virtual ones, no?)
Today’s unlimited information makes the boundedness of bookcases profoundly comforting. My inner librarian is also soothed by arranging books. When my young children go to bed and I’m confronted by their daunting mess, my favourite activity is tidying their bookcase.*looks around at piles on floor* And not even the excuse of having small children.
Me, myself, today, I was actually doing something that might be considered my inner archivist at work - going through what I cannot even with any accuracy describe as my files, to bring some order into various matters of life admin, accumulated over a considerable period. The cobblers' children...
Bread during the week: brown oatmeal.
Saturday breakfast rolls: from the wholewheat nut bread recipe in James Beard, cutting down on the amount of sweetener he seems to think necessary - sugar AND honey!!! Nice. Haven't made these for yonks.
We stayed in Saturday evening and I made the following meal: starter of healthy-grilled asparagus and hard(ish)-boiled quails' eggs, sprinkled with a dukkah-type dry dressing of toasted sesame and sunflower seeds + pinenuts, crushed in a mortar; then smoked swordfish (which I had happened to spot in the organic butchers/fishmongers), which I served with ground black pepper and lemon, and a couscous and raisins salad dressed with lemon juice and olive oil, heritage tomatoes sliced and tossed in wild pomegranate vinegar with salt, sugar and basil (maybe it's me, but do heritage tomatoes, whatever their colour and shape, all taste like tomatoes?), and a hot cucumber pickle thing from one of my books of Japanese cooking - cut the cucumber in 4 lengthways, cut out the seeds, chop into batons, stirfry briefly in sesame oil with dried chile, add a mixture of soy sauce, rice vinegar and sugar (recipe also says salt, which I consider supererogatory with soy sauce) cook briefly, and leave to marinate for a bit.
Today's lunch: duck steaks, panfried and then rested as per instructions on packet, with Greek spinach rice (for some reason the rice was a bit too al dente), okra simmered with ginger, coriander and fish sauce, and padron peppers.
via liseuse. Why do I think this was compiled by somebody who has not been reading for as many decades as I have? (I am still considering that peach you are offering me.)
1. You currently own more than 20 books: I slightly shudder to think how long ago I passed that mark.
2. You currently own more than 50 books: vide supra
3. You currently own more than 100 books: vide supra
4. You amassed so many books you switched to an e-reader: no, I switched to an e-reader for portability when on the move.
5. You read so much you have a ton of books AND an e-reader: is this at all exceptional?
6. You have a book-organization system no one else understands: I used to have a book organisation system but with one thing and another much of it has fallen into chaos.
7. You’re currently reading more than one book: yes, but some are more backburnered than others.
8. You read every single day: I breathe every day too.
9. You’re reading a book right now, as you’re taking this book nerd quiz: I'm not actually trying to multitask here.
10. Your essentials for leaving the house: wallet, phone, keys, and
a book: unless I'm just going round the corner to the shops or to the gym, e-reader; also, Freedom Pass for London Transport.
11. You’ve pulled an all-nighter reading a book: no, but I've stayed up later than I intended.
12. You did not regret it for a second and would do it again: no.
13. You’ve figured out how to incorporate books into your workout: WOT.
14. You’ve declined invitations to social activities in order to stay home and read: no, but there are occasions I may have wished I had.
15. You view vacation time as “catch up on reading” time: to some extent. Also, long journeys.
16. You’ve sat in a bathtub full of tepid water with prune-y skin because you were engrossed in a book: eeeeuuuuwwww, no.
17. You’ve missed your stop on the bus or the train because you were engrossed in a book: yes.
18. You’ve almost tripped over a pothole, sat on a bench with wet paint, walked into a telephone pole, or narrowly avoided other calamities because you were engrossed in a book: not to my recollection.
19. You’ve laughed out loud in public while reading a book: once or twice.
20. You’ve cried in public while reading a book (it’s okay, we won’t tell): no.
21. You’re the one everyone goes to for book recommendations: I'm not sure this is a thing one can say about oneself.
22. You take your role in recommending books very seriously and worry about what books your friends would enjoy: what am I, some kind of missionary? I put my thoughts out there and people can make their own decisions.
23. Once you recommend a book to a friend, you keep bugging them about it: good grief, no. Seriously poor ton.
24. If your friend doesn’t like the book you recommended, you’re heartbroken: oh, come on, how old are you, 6?
25. And you judge them. A little bit: de gustibus non est disputandum, seriously.
26. In fact, whenever you and a friend disagree about a book you secretly wonder what is wrong with them: what are you, 6?
27. You’ve vowed to convert a non-reader into a reader: eeeeuuuuwww.
28. And you’ve succeeded: you have a great future ahead of you as a cult guru, but count me out.
29. You’ve attended book readings, launches, and signings: only when it's been mates of mine launching their book.
30. You own several signed books: a few, but mostly ones by friends.
31. You would recognize your favorite authors on the street: some of them.
32. In fact, you have: no.
33. If you could have dinner with anybody in the world, you’d choose your favorite writer: this supposes that there is one prime favourite. Also, quite a lot of my favourites are dead.
34. You own a first-edition book: a few, none, I think, that I went out specifically to collect rather than happening across a copy that was.
35. You know what that is and why it matters to bibliophiles: oh, come on.
36. You tweet, post, blog, or talk about books every day: no.
37. You have a “favorite” literary prize: I skorn them utterly.
38. And you read the winners of that prize every year: what, with my existing tbr pile?
39. You’ve recorded every book you’ve ever read and what you thought of it: life is too short.
40. You have a designated reading nook in your home: no.
41. You have a literary-themed T-shirt, bag, tattoo, or item of home décor: what is this even. Okay, I do have a photo of Dame Rebecca on my wall: it was a present. Do piles of books count as home decor?
42. You gave your pet a literary name: what pet.
43. You make literary references and puns nobody else understands: I will cop to that.
44. You’re a stickler for spelling and grammar, even when you’re just texting: ditto.
45. You’ve given books as gifts for every occasion: birthdays, Valentine’s Day, graduations, Tuesdays...: not really.
46. Whenever someone asks what your favorite book is, your brain goes into overdrive and you can’t choose just one. You end up naming twelve books: and then adding afterthoughts.
47. You love the smell of books: yes.
48. You’ve binge-read an entire series or an author’s whole oeuvre in just a few days: or at least over the course of a few weeks.
49. You’ve actually felt your heart rate go up while reading an incredible book: I've never actually checked this.
50. When you turn the last page of a good book, you feel as if you’ve finally come up for air and returned from a great adventure: not sure I would put it exactly like that.