Not Quite a Live Blog

But I’m keeping this open while I watch the SBS Insight program and will edit & update as the mood takes me, so maybe ALMOST a live blog depending on how I feel.

There’s been a lot of talk on the Australian ME/CFS facebook page today, with many people expressing severe doubts that it will be any good. One thing that prompted this was this article: Can exercise help manage the symptoms of chronic fatigue syndrome? There’s an immediate OH HELL NO knee jerk here.

But on the other hand, maybe not. The title says “help manage” not “cure”, which is good. But author Nathan Butler says the PACE trial showed GET helped more than pacing. which is unadulterated bullshit. It did no such thing. (Discussion Link) On the third hand, he says “Exercise needs to be tailored, individual and flexible” and “I often describe exercise as any physical activity that is above and beyond what you normally do so that may be sitting up in bed for those that cannot leave their bed” – which is good.

I’m a minor advocate of GET, when done carefully. Or as some people term it to get away from the PACE stigma, mobility therapy. I believe that non-aerobic activity like stretching and strength are good for me.  I find them quite easily  tolerated in small doses, and in theory, being stronger means less exertion and therefore more ability to do things without malaise. Not that I’m doing anything right now while I’m in recovery from pneumonia, but I am looking forward to getting back to it.

Bur the show may not even be about this. Watch this space…

And it begins. The teaser ad is worrying, Devastating etc but then… is recovery possible? A perky young woman says she’s fine.

And an article by a participant came out yesterday on MEAustralia.net and it’s also very worrying. It seems that some of the clinicians being interviewed are very wedded to their problematic treatments.

The participants with ME/CFS seem sympathetic. They are all young.

The kid, Luke, represented by his mother, is heartbreaking, and so familiar. “Post-viral thing.”
Adele, twenty-something, sporty, and active, had glandular fever.  “My body was lead.”
Andrew, 31, is the participant who wrote the article above. Glandular fever and shingles onset. Went to the Melbourne Fatigue Clinic.
Deb, recent maternity leave, “some kind of virus”.  Doctor did not believe her.
Mark Donohoe, the GP,  brings up PEM.
Ketra lives in a nursing home, severely bed bound. Same old post-viral onset.
Alistair Lynch, pro footballer, thought the onset was a hangover but it never stopped.
Andrew, climate scientist, had teens with ME/CFS; one had no obvious onset, the other glandular fever.

The inability of doctors to do anything, and the disbelief from the general community and some health professionals is par for the course. Luke’s mother says she always has to show it’s not Munchhausens by proxy. Depression is commonly suggested. GP Mark concurs: I’ve heard these stories a hundred times.  Noted that 4x more women than men get it, which is the case with most autoimmune diseases… so is it?

Researchers:
Sonya Marshall-Gradisnik (Griffith University) talks about genetic ID, the calcium channels, finding genetic markers. Calcium can’t get into the muscles so they don’t work.
Paul Fisher, microbiologist, works on mitochondria – CFS patients have something wrong here.
Chris Armstrong, metabolomics, found many differences in energy metabolism metabolites, amino acids rather than sugars used. Gut microflora seem implicated.
Andrew Lloyd, Adelaide, infectious diseases: an infection can be a trigger for CFS. It’s probably something in the brain – not the mind. (Evidence seems lacking. Is he even an active researcher like the others?)

“Over a hundred double blind trials and not a single therapy researched as yet has benefit over placebo.”

Treatments:
Andrew Gram father of 2 with ME/CFS – nutrition, meditation, mindfulness, optimism. Son is partly recovered. “Significant improvements”.

Andrew L wrote the 15 year old guidelines, CBT & GET was all we knew.
Andrew B tried it and oh, so not good. Blaming the patient for not doing it properly.
Adele – saw the same one, and it was successful for her. Started slow, with walking to the letterbox, then down the street etc,

Nathan the exercise physiologist: seems OK. Pacing to get baseline, Best to be cautious, Do what does not exacerbate symptoms. In some cases just sitting up in bed is enough exercise.

Mark Donohue: my patients don’t do well with GET. It occasionally works for some people.

Jennie asks Andrew L should we update the guidelines? Nah, we don’t have anything new.
Ketra: guidelines should be changed to match the recent US update.

Adele is all better now and playing state netball. Lucky lucky bastard.
Alaister L, AFL also is better and back to footie. Also, lucky bastard.

GP Mark: great outcomes like those are very rare. Getting enough back to think you’re better tends to mean getting about half way. Many don’t make it. Seven suicides among his patients.

Deb: is part way better. Works 3 days a week, rests two. Sometimes runs.
Ketra: is not better. Does some mild exercise with a physiotherapist.

GP Mark: important to acknowledge the depth of the disability. Many doctors and specialists don’t. NDIS often doesn’t. They want the blood tests which don’t exist. Also, we have no treatment. CBT and GET certainly won’t be the long term answer but it’s what we have now.

The End
Well, it wasn’t too bad. They certainly weren’t hyping CBT & GET as much as the community had feared –  but also did not condemn it as much as the community would hope. Nobody questioned the reality of CFS, and they did critique the medical establishment’s failures. But also nobody questioned why CBT might even be remotely relevant to treating a disease that is not a mental illness.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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More On Being Sick When You Are Sick

Following up on my previous post, I am still sick. Not as sick as I was, but there’s still a slug farm operating down in my lungs, and I’m too weak and tired even to do my usual stretching. Dr Google sent me to the NHS which tells me I can expect a long recovery time, but I think mine was milder than their model. I’m two weeks in and already up to the four-six weeks phase.

four weeks – chest pain and mucus production should have substantially reduced. six weeks – cough and breathlessness should have substantially reduced.
three months – most symptoms should have resolved, but you may still feel very tired (fatigue)
six months – most people will feel back to normal.

Ooooh, back to normal – that would be nice! I DREAM of being normal. Probably not going to happen, but you never know your luck… It’s a common trope in cartoons and sitcoms: the Injury Bookend. One whack on the noggin causes amnesia, a second one cures it.  So one pneumonia=ME/CFS, two pneumonias=cure? Yeah, right. I’m sure that’s going to work.

Anyway, I have been considering the difference between acute and chronic illness. It’s a very different kettle of fish in many ways. Primarily, with an acute illness you expect to get better within a fairly limited timeframe, while a chronic illness may never leave you. This plays out differently in many ways, both practical and psychological.

The basic framework is:
Acute: Focus on getting over the thing.
Chronic: Focus on learning to live with the thing.

How this works for different people and different illnesses will vary, but in my current case, this is how it works.

Acute: Take all the drugs!
Chronic: Be cautious with the drugs, you don’t want to ruin your liver or overuse them so they stop working.

Acute: Spend the day in bed.
Chronic: Get up. Even if only to the couch.

Acute: Nap all you want.
Chronic: Don’t nap, it messes up your sleep cycle.

Acute: Take your meds and keep hydrated. Everything else is optional.
Chronic: Do the self-care. Wash your face, clean your teeth, take your vitamins and all the rest of it.

Acute: Rest. Don’t try to do things.
Chronic: Cautiously do things, as much as you can within your limits.

Acute: Swear, grump, bitch, moan and vent.
Chronic: Try to be zen about it. Mostly. With the occasional bout of swearing and crying, but let’s not make ourselves miserable by dwelling on what can’t be changed.

It must be odd for The Bloke, since now that we’re home and I’m two weeks past the worst of it, I’m just hanging out in my nest in the couch like always. There’s a lot more coughing and rather less activity, but he can’t really see the difference at a glance. Did I do my morning exercises or just drag myself from bed to couch? Am I knitting something super simple or something that takes brains? Am I playing match 3 games all day or engaging in social media, research, writing, or other online activity? Am I reading some light fluff, or learning Japanese and reading Ancient History? It looks the same.

Being this acutely sick is quite a lot like having severe post-exertional malaise without the exertion and with added coughing. The quality of the sore throat and aches is different, but that’s a bit subtle. In some terrible way, it is a bit good. It reminds me that I haven’t given up, because this kind of being sick is what i think of as giving up. Not even trying to get anything done.  And it reminds me that I do still have some quality of life remaining. I can usually do more than this, and maybe I should appreciate that more.

 

 

 

 

 

What’s in the Tabs?

A lot of stuff I’ve been meaning to post about, is what. But my energy is low and so I’ll just do a link roundup. Then I can actually close all those browser tabs and come back to find them later, if I want.

“Your disease is real” says JJJ hack. all over my FB newsfeed for weeks. Well, thanks, I know, but very interestingly there may be a diagnostic test not too far off, based on calcium channel activity,

Researchers found chronic fatigue syndrome and the related myalgic encephalomyelitis, or ME, is a calcium ion channel impairment condition.

Further in Australian media we are getting  a whole programs on SBS Insight about ME/CFS. Due to air on Tuesday 16 October, this will be a must-watch.

Also in my tabs, there is this thing about dietary supplements for mitochondrial disease, which may or may not have any relevance. Mitochondrial malfunction is one of the ME/CFS hypotheses.

Another hypothesis is a malfunction of the autonomic nervous system, which can be addressed by retraining the brain. (Site links out to two programs for sale,  so caveat emptor there.) The Bateman Home Centre explains a bit more how this could work, and notes a potential drug treatment – pyridostigmine, a drug used for the muscle disease myasthenia gravis.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness is a whole book that you can read online for free. It’s from the US National Academy of Sciences, and it’s the 2015 report that recommended renaming ME/CFS to SEID: Systemic Exertion Intolerance Disorder. The rename didn’t take, but apart from that it’s a seriously big and thorough report and I have not finished reading it.

A couple of other tabs are about living with illness. Knitting designer Kate Davies has a book, HandyWoman, about her recovery from a stroke, and there’s some supplementary material on her website. This one is about the Etac turner, a piece of rehab equipment that had a major effect on her both for enabling her mobility and as an exemplar of simple yet effective design.

When you’re sick of being sick some of these tips might help. But mostly I had this open to remind me of the author’s book How to Be Sick, which I must get round to reading one day.

And another knitter, Knitsonik, has a piece about bullet journalling and how she uses it as a tool for tracking self-care. I am a very low key journaller, but this is inspiring me to perhaps improve my system. (Thanks to hmsh for this one.)

 

 

 

 

On Being Sick When You Are Sick

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It seems grossly unfair. Surely being seriously ill should make you immune to being otherwise ill! It doesn’t, though. Bugger.

One difficulty is that the signs get harder to read. For a normal person, a few coughs and sneezes most likely mean a minor cold. Take some pills and/or hot toddies, and take it a bit easier and you’ll be fine. If you are also aching and deeply fatigued, then it’s time to take it more seriously and get some bed rest. If it’s bad, see the doc to check if you need antibiotics or not.

For me, though, with ME/CFS, aching and deeply fatigued just means it’s any old day after an outing. So the difference between serious and trivial is masked, until it gets far too serious to ignore. I wrote about the guessing game recently, and now I’ve just gone through another case where I lost the game, and it did matter. I probably should have cancelled my trip and stayed home, but I got it wrong.

So instead of rescheduling, we pottered off to Melbourne, via Beechworth. I was still thinking I’d take my cold & flu pills, buy some nice honey lozenges at the wonderful honey shop, and I’d be fine for the Bloke’s birthday pizza and beer at Bridge Road. But no. Probably the first serious sign was that I was too tired to knit. I’d do a half dozen stitches and stare out at the scenery and vague out.

The rest of the story is pretty boring medical crap. I semi-passed out, spent all the rest of my Beechworth time in bed, emerging only to crawl off to the bathroom a couple of times and inhale copious amounts of Ventolin. Next morning the Bloke took me off to Wangaratta hospital emergency where they gave me blood tests and a chest Xray and steroids for my asthma. They said I probably didn’t have pneumonia but they would get the expert to check. We went on to Melbourne and I crashed in my friends’ guest room for the next week.  On Monday the Wangaratta doc rang up and said, umm, err, you do have a mild case of pneumonia, get antibiotics. So the Bloke took me up to the local clinic and I did.

The steroids and antibiotics seem to have worked, and after the 5 day course I was able to go out to lunch a couple of times (pub lunch, and fancy tea!). But mostly I spent the time in the guest room lying down, listening to my lungs creak and coughing up half a lung or so. No bloody fun, I tell you.

I was half glad and half sad to come home. It’s good to be in my own home, but I was very sorry to miss most of the opportunities of seeing my Melbourne friends.  And of course coming home does not make me better, damnit. I’m still hacking up copious amounts of grossness. They say it takes up to six months to recover from pneumonia, and I’m on track with the fever gone and just the cough and fatigue remaining. But last time I (probably) had pneumonia, I never recovered. It was hello to my new life with ME/CFS and adult onset asthma. Will there be lingering effects this time? Who knows?

I wish I could say I learned a lesson from this, but really I’m not sure I did. I must remember not to travel without my steroids: even if I only need them once every two years, when I do need them it’s important. But that’s just for the asthma. How will I know in future if I need bed rest and antibiotics instead of couch slothing and cold & flu pills? I really don’t know.

Knitting on the Road

I’m off to Melbourne shortly, and I was thinking of writing a post about road trips. But I have a horrible cold with a very impressive cough and a fever, and even less energy than my usual low. I haven’t even started packing, and usually I start a week in advance so I can do little bits at a time.  In earlier times I would have said “it’s only Melbourne, if I forget something I can go buy it” but these days going out is a much tougher task.

Since the Bloke drives, I can get in quite a lot of knitting in the passenger seat. I have actually knit lace from charts by propping the chart up on the glovebox. Not fine lace, I prefer to knit heavier weight yarn on the road. The freeways can be quite smooth but even so it’s a bit shaky and it’s much easier to handle thicker yarn.

My Fat Green Lace Cardi is a good candidate for that. It’s in Paton’s Inca, a bulky (12 ply) yarn. But will I have the brain space to handle charts? The last couple of days I’ve been feeling too sick to knit anything complex, and I don’t see me recovering all that much before we leave. I could do the sleeves, though. That’s pretty plain.

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The main one to take on the road is Scalene. This is a no-brainer: a very simple triangle scarf. There’s a keyhole which makes it easy to wear, but that is also easy.  I’m getting close to that point, and there will be some black striping to come. I may well finish it on the way, so I will need something else for the trip home.

 

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In the last few days I’ve been working on my Song of the Sea cowl (infinity scarf) because it’s pretty easy. I have been screwing up a bit and there has been tinking (un-knitting) but for the most part I don’t need to refer to a chart, just count up to 14. I’ll take this one in the car with me. The yarn is a bit fine, perhaps, at 4-ply/fingering, but it might work. It will be a good one to take to knit group. I’ll take it in the car, too, and see how the weight works for me.

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I am also going to take Dance of the Hours cowl (short neck-warmer type of thing) with me, but in my suitcase. There’s no way I could knit two colour cables on the road with my brain in the state it is. I might be able to work on it at my friends’ house later in the week.

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Finally, I’m going to take a brioche project. This has been my theme for the year, but after finishing Aurora I decided to take a break for a month. I do have Rebel Two started, but I think I’ll actually start a new one for the trip. Rebel Two is a bit fiddly with complicated increases and decreases requiring close attention to pattern. But the Briochevron cowl and scarf is basically a one-row pattern, so not a bad candidate for a road trip. And I’m making it in DK (8 ply) so it’s a good weight for knitting on the road.

This is it modelled by designer Stephen West. See? Perfect for a trip. West is a delightful madman, a ludicrously flamboyant knitting rock star but also sweet and kind. This is a fairly tame version for him: only one neon peach. Mine will be more muted, in a purply red and sandstone.

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So, that’s five projects. Enough for a one week trip? Or should I add another? Would six be excessive? I’ve been thinking for a while of making a braided scarf, like Lucy Liu wears in Elementary.  Google image search has mostly failed me: this terrible dark shot is the best I could find.  Of course several people created patterns, and the Barrington Knits version below shows the design quite clearly.

 

I have in mind to do a three-colour variation in the blues from White Gum Wool DK. But I’ll create my own version rather than buying the pattern. Maybe even do some stitch variations – a rib, a wavy rib and a checkerboard? Or maybe not, that might be too fussy. Anyway, since it’s so simple (except for the final grafting) it would also make good road knitting. Maybe I’ll pack the yarn just in case. OK, that’s six projects.

 

 

The Guessing Game

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Yeah, I know.  ME/CFS. It’s a bastard. One of the perhaps surprising ways that it is a bastard is that it likes to keep you guessing. You wonder: do I feel like crap because I’m coming down with something, or do I feel like crap because it’s a day ending in Y?

Is this the onset of a cold, or is this achiness and sore throat from malaise due to going out two days in a row?

Are my guts grumbly and loose because of something I ate, or is it a new ME symptom developing? Or did I just spray on too much magnesium?

Are my eyes refusing to focus because I’m too fatigued, or do I actually need new glasses?

Do my muscles ache because I lifted some weights or because I’m in malaise?

Am I extra clumsy and smashing things because of ME brain fog or is it low blood sugar faintness and dizziness?

Does my head hurt from sinus pain, or is it the ME/CFS?

Am I sleeping badly because of ME or because I’ve been doing too much blue light screen time at night?

The answer can also be “why not both?”, or some complex interaction. I might be dizzy and faint because I’ve postponed eating because I’m too fatigued to stand up and get food. Or have a headache because I’m dehydrated for the same reason. And even with brand new glasses, I have trouble focussing when fatigued.

To some extent it doesn’t matter, because the treatment is usually the same. Rest, take some OTC symptomatic relief if it’s bad enough to warrant it. Paracetamol for pain, ventolin and hot drinks for a tight chest. Lavender or a Vicks inhaler  can clear the sinus pain type headache. I find kombucha seems to settle my guts, and it’s also delicious (thank you hipsters!).  I’ve taken to using some clip-on yellow light filter glasses when I look at my ipad or iphone just before bed. I think it helps a bit.

But the focus thing was a bugger; I should probably have gone to the optometrist  months sooner. I really did think it was just fatigue, until one day I was randomly holding my glasses at arms length and everything through them was crystal clear. So off I went and got new glasses, which have indeed improved my ability to read. Thanks goodness. That had been worrying me for some time. CURSE YOU, ME/CFS YOU TRICKSY BASTARD!

 

 

 

Consulting Dr Google

When you have a chronic illness for which there is no established treatment, what can you do?

As I’ve noted before, It’s so easy to be fooled when you’re out of your depth. No matter how smart and educated you are, no-one is immune. I am very much out of my depth where it comes to medical research – and I write that as a science-minded person who has actually worked in bioinformatics, medical research, and public health. I was a scientific and statistical programmer, so I picked up a fair amount of domain knowledge. And very importantly, I learned enough to know what I don’t know.

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Pope was onto something there, well before Dunning and Kruger and well before the “arrogance of ignorance” was such a big thing in politics. However, he’s not entirely right. A little learning is really only dangerous when you mistake it for a lot – like antivaxxers, creationists and climate change denialists. And also like all the desperate people who sadly fall for miracle cures for cancer. Wishful thinking is a big danger.

 

I do have a few heuristics for evaluating health claims on the internet:

  • Is it too good to be true? (Then it isn’t.)
  • Is it a miracle cure? (No it isn’t.)
  • Is it a cure-all? (Then it doesn’t.)
  • Are they selling something? (Caveat emptor!)
  • Is there no evidence but testimonials? (You can just make these up.)
  • Is it a known quack site like Mercola, Dr Oz, David Avocado Wolfe, etc? (Run away!)
  • Do they endorse quackeries on the level of homeopathy, reiki, anti-vaccination and such? (Run away!)

 

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But. Here is the fly in the ointment. There IS no medicine that’s been proved to work. So it’s do nothing, or try the things that have not been proved not to work. As long as there is some plausibility to the hypothesis, I’m a bit more lenient on some alternative medicines. Vitamins and other supplements, herbs and even acupuncture and chiropraxy can have some effects. They do something more than magic water and handwaving. True, it might be something dangerous –  don’t let a chiropractor near your neck and beware of Traditional Chinese Medicine – but just maybe you’ll get lucky and it will be a harmless placebo, or even really help a bit.

So what can we sensibly try? The ME-pedia has an incredibly long list of suggested treatments. This is a collection of extreme variability: some are feasible, some are pretty out there, some are complete nonsense, and some are actively harmful. As they note:

Disclaimer: The following is a range of some of the interventions (including anecdotal) that have been used by patients to try to treat both individual symptoms and the disease as a whole, some of which have been researched and many which have not. The vast majority lack ANY reliable evidence of efficacy. Many carry significant side-effects and risks. This content is provided for information ONLY.

So, ruling out the coffee enemas, homeopathy, exercise and talk therapy what can you do? Pick one and go research, is my approach. A couple of sites that can help you to evaluate online claims for yourself are Trust or Trash and this short tutorial at Medline.  For identifying the Bad Guys, I’m also quite fond of Science-Based Medicine and Respectful Insolence. Quackwatch can also be worth a quick check.

Government and medical organisation sites such as Health Direct , WebMD, the Mayo Clinic and the like can be helpful, even if sometimes their understanding of ME/CFS is very limited and they still think exercise and talk therapy are valid treatments . They are slow to change and conservative, so even if some are stuck in the past on ME/CFS they may still know if a supplement is completely useless or dangerous. Likewise, Cochrane is normally the gold standard, but they seem to be sadly mistaken about ME/CFS – Mental Disorders? Seriously? Still? (Commentary here but I’m getting off topic now.)

Currently I take vitamin D and iron, and I’m trying out some vitamin B12 thanks to Dr Google. I occasionally use some D-ribose. I have also been collecting supplements for some mitochondrial support but I haven’t started on that. I’m very cautiously trying some exercise, and I’m also considering an old calcium channel blocker antihypertensive, which oddly seems to be a calcium channel enabler everywhere but the heart. (Nifedipine.)  What are calcium channels, you may ask? Buggered if I know. I refer you back to the beginning of this post.