Exam Dreams and ME

Dear subconscious, it has been decades since I was at university as a student and the odds of me needing to take an exam ever again are minuscule. And I certainly would not need to be writing about the DNA bases in Japanese, and I do so remember what ACTG are in Japanese (or rather, a ka ta ga since hiragana is a syllabary. But I would guess that Japanese scientists use the romaji anyway.)

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But you know, asshole brain has a point. Sometimes life with ME is like being a student. Just the other day I handed in a report. And there is so much technical stuff that people share around. If I were going to read it all, I’d need a thorough course of study in ummm,  something. Biochemistry? Molecular medicine? Definitely Metabolomics, but I’m not sure what the prerequisite courses are. And guess what! Brain fog, easy fatigue from mental activity… NOT going to help with that.

Here’s an example of stuff that turns up in my ME/CFS related FB groups.

Abstract

A model of the development and progression of chronic fatigue syndrome (myalgic encephalomyelitis), the aetiology of which is currently unknown, is put forward, starting with a consideration of the post-infection role of damage-associated molecular patterns and the development of chronic inflammatory, oxidative and nitrosative stress in genetically predisposed individuals. The consequences are detailed, including the role of increased intestinal permeability and the translocation of commensal antigens into the circulation, and the development of dysautonomia, neuroinflammation, and neurocognitive and neuroimaging abnormalities. Increasing levels of such stress and the switch to immune and metabolic downregulation are detailed next in relation to the advent of hypernitrosylation, impaired mitochondrial performance, immune suppression, cellular hibernation, endotoxin tolerance and sirtuin 1 activation. The role of chronic stress and the development of endotoxin tolerance via indoleamine 2,3-dioxygenase upregulation and the characteristics of neutrophils, monocytes, macrophages and T cells, including regulatory T cells, in endotoxin tolerance are detailed next. Finally, it is shown how the immune and metabolic abnormalities of chronic fatigue syndrome can be explained by endotoxin tolerance, thus completing the model.

Linky: Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

So, here’s an abstract that is relevant to my interests. And I do not understand it. Here are some terms that are over my head.

  • oxidative and nitrosative stress
  • the translocation of commensal antigens into the circulation
  • hypernitrosylation, endotoxin tolerance, sirtuin 1 activation.
  • The role of chronic stress and the development of endotoxin tolerance via indoleamine 2,3-dioxygenase upregulation and the characteristics of neutrophils, monocytes, macrophages and T cells, including regulatory T cells, in endotoxin tolerance

OK, I could look up most of it, with google and wikipedia, but I’m mostly too tired and vague, and also I’m pretty sure it would lead back to many other terms I don’t understand. It would be a never-ending rabbit hole of confusion. I’d do much better finding a place to start and building up to it.

But I’m not sure I want to. I only have a few hours of good brain space a day, and I want to learn Japanese and read fun SF & mystery books. And also I want to knit and do other crafts that I haven’t touched since the pneumonia. I’ve done a lot of studying in my time and I’m pretty sure I could still learn whatever it is I need to, even if more slowly than I used to learn. But it just seems so unfair that I would even have to. Don’t we have professionals for this?

So, here is another way that having ME/CFS sucks. All of the knowledge is new, and coming out in full-on academic research mode. Doctors don’t know it.  There’s certainly no popular science for a quick overview education. If you want to follow along, there’s one hell of a lot to learn, and that’s too much to ask of most people with ME/CFS and its consequent cognitive problems.

 

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Submission to the NHMRC

Here is where to go if you want to have a say. The deadline is noon next Monday.

In writing this submission I had hoped to give a more personal patient experience rather than taking a detailed line item approach. This is in no small measure because I have ME/CFS. This extremely debilitating disease has not left me with much mental energy for reading and processing technical reports. However, that option seems to be unavailable as it is “out of scope”. Damnit.

Out of scope for this public consultation

The following types of submissions are out of scope and will not be considered:

  • Detailed personal history/narratives
  • Personal medical information/records
  • Opinion pieces/blogs/newspaper articles
  • Personal opinions regarding committee membership
  • Research proposals or requests for funding of specific projects
  • Specific recommendations for clinical care.

What I could do was create an online account and answer a set of specific questions. So I did that. Honestly, I can’t find much to disagree with in any of the report, although some of the cautiously guarded scientific language has left many community members unhappy. More emphasis seems warranted, particularly on the discrediting of the PACE trial. It’s much more a matter of emphasis than of substance.

So, here’s my submission. There’s no doubt more I could have said and written, but, well, I was too tired and I reckoned that a tolerable submission was better than no submission.

The formatting leaves much to be desired; that’s their fault not mine. I did put in paragraphing but they seem to have helpfully removed it.Along with the 1b heading. Oh well.

1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?:
Ok
Comments:
While it is correct in broad strokes, the degree of understatement in this report is extreme. The range of problems includes stigma and disbelief, the lack of any specialist services, the poor education of medical professionals, as well as the sheer difficulty and costs of severely ill people getting to a doctor at all. The ME/CFS community organisations and social media groups report a never-ending stream of misdiagnoses, delayed diagnoses, condescension and dismissal from medical professionals. In addition, the fact that there is no established treatment is a very great obstacle to receiving care, especially when the perniciously counter-productive CBT/GET combination is still recommended in some quarters. Some medications that are prescribed internationally are not available to patients locally, or if so are non-PBS and therefore prohibitively expensive if one can even find a practitioner willing to prescribe them. Low dose Naltrexone, Wellbutrin, and high-quality probiotics are examples. My personal case involved 4 years from onset to diagnosis, including a number of specialist referrals to exercise programs that may have worsened my situation.
Comments:
As a non-clinician I cannot comment with authority on the experience of clinicians. Based on my experience as a patient and community group member, I suggest that professional education very urgently needs addressing. A decent set of diagnostic criteria would help matters, and at very minimum, a retraction of any advice to use GET. Note that addressing GET under “Community Concerns” implies that this is a concern for patients only, when it is a concern shared by biomedical researchers and clinicians, and these concerns are supported by biomedical research. This is of vital importance for clinicians to know.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.:
Neutral
Comments: How could the recommendations be improved?:
Again, in broad strokes this is not too bad, but in detail there are issues with emphasis and approach that could be improved. In reference to s5.3.3.1 We do not need to “update” the ancient 2002 guidelines. We want them to be entirely discarded and replaced with something sensible. The Canadian Clinical Criteria seem suitable. In reference to s 5.3.3.2 The interim “range of resources for clinical use” available on the website includes the outdated RACP 2002 guidelines as well as other resources that refer to the utterly discredited and pernicious GET/CBT. This list of resources needs to be more carefully curated to exclude the inaccurate and damaging items. In addition, some items are offline and/or subscription limited which makes them hard for community members to assess. Furthermore, many needs have been addressed only in passing. The difficulty in accessing services by the more severely suffering patients, many house-bound and some entirely bed-bound, needs much more attention.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.:
Agree
Comments: How could the recommendations be improved?:
The lamentable state of existing research funding has in fact been OVER-stated. Many of the research grants discussed did not, in fact, go to ME/CFS research but to a broad range of fatigue related research including Gulf War veterans, muscle fatigue and post-infective fatigue. I strongly support the recommendation that AIHW should produce a study on the Australian situation, including prevalence and burden of disease. As ME/CFS is not a notifiable disease, this will be no easy task and I would stress that funding will need to be supplied for this work.
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.:
Neutral
Comments: How could the recommendations be improved?:
Studies need to use consistent criteria and absolutely must include PEM to avoid confounding with other kinds of fatigue. A biobank seems all well and good, but funds for actually analysing the data will be imperative. Research on biomarkers is worth continuing. The report suggests that decades of research have not yielded results, but this is incorrect. Those decades of (poorly-funded) research have largely been focussed on the incorrect and stigmatising psychosocial model of the disease. In the last few years, biomarkers have been found by almost every study that looked for them, and diagnostic test seem not too far off now. Strategies for community inclusion and consultation need to take account of the disability levels of ME/CFS patients.

 

 

 

 

Snippets of Discovery

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Some things I have discovered recently.

A good heuristic for when to take Panadol is when I find myself speaking out loud about the pain. Doesn’t matter if it’s  just “ow” or “FUCK my head hurts!”. Out loud is the thing.

Playing D&D, even quietly on line, by text on a bulletin board, is a big suck of social and intellectual spoons. But SO MUCH FUN! Worth it.

It turns out that I don’t especially enjoy knitting cables. The result is fine, but the faffing about with cable needles breaks my flow. I don’t hate it enough to avoid entirely, but it will need to be something pretty special, once this blanket is done.

Earplugs are your friend. I recently went out to see a crazy queer burlesque game show, and the music and audience shouting were so loud that my sound sensitivity would have sent me running in 5 minutes. But with earplugs – no problem!

Bircher muesli too much effort to make? Grating apples and measuring oats and all that crap? Try my no-recipe quickie. Mix a nice untoasted muesli with a lot of natural unsweetened yoghurt (approx even quantities by volume of each) and a dash of water to loosen it up enough to be easy to stir. If you feel like it, add some frozen berries or canned pie apple (another discovery: this is unexpectedly good,) Cover and let it sit in fridge overnight. Taste for sweetness when it’s done, add a spot of whatever sweet stuff you want if it needs it for your taste. Maple syrup is good here.

 

 

Spoons, Batteries, Dodgy Chargers and Marathon-Flu-Hangovers

I recently read a piece on The Mighty by a writer who really does not relate to the Spoon Theory.  She prefers to use an analogy of a dodgy battery. It made me  wonder if people are taking Spoon Theory more seriously than it deserves. It was, after all, a spur of the moment idea for one woman to explain her life to a friend. It resonated with many people, including me. You only have so many spoonfuls of energy and you have to be very careful how you use them. I’ll cheerfully stick with the spoonie label.

But she does have a point. It’s not intuitively obvious: what on earth has cutlery got to do with energy? There have been many other analogies made. For example, this writer prefers cash, which gets at the budgeting idea. And a piece on Junkee asks you to “remember when you ran a marathon, drank a bottle of vodka and woke up with a hangover compounded by the flu?”  That one certainly gets at the bad days, but most days I’m not that bad. I don’t always have the flu feelings.

I really like this one – it gets at the unpredictability of it.

“It is like having a bad phone charging cord. You plug it in expecting to wake up with a full battery. But the cable didn’t connect properly so you wake up with 20 percent or less. No matter how much you try to rest, or ‘plug the phone back in to charge it,’ it doesn’t always work, or you only get another 5 percent after hours of rest/’charging.’ You never know how much battery power you will have at any given moment, and even when you try you can not fully charge when you need or want to. You just have to take what you get and use the power wisely.” — Priscilla G.

Unpredictability is definitely part of the experience. Some days I know I’m going to be out of action. A poor night’s sleep shows as soon as I wake up. But other days I feel “fine” in the morning (*not actually fine, but relatively), and then get hit by malaise later on. This is most likely to happen if I’ve been active the previous day. I go out to lunch, perhaps, and feel OK the next morning but at T+24 hours, whammo! I sort of plan for this by not going out two days in a row. But it doesn’t always happen, and also sometimes it just hits out of the blue.

And now that I’m (still) recovering from pneumonia, I’m having days when I actually feel alert around lunchtime, as I used to when I started this blog. But then on other days, around midday is killer headache time, and there seems to be no pattern to that. Perhaps it’s the heat, but perhaps not? That old sample-of-one problem strikes again.

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Damnit.

 

Blankets in Summer

It’s been hot. Damned hot. Canberra is having a slight reprieve today, in the yellow zone. Phew. So, naturally, I have been knitting blankets.

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My non-knitting friends may wonder at this, but really it’s very sensible. You see, many blanket patterns are modular, so you are only knitting a small thing and do not have a big drape of wool over your lap. I’m not going to be touching my Rebel shawl or my bulky cardigan until things cool down. But blankets work. Mostly.

Here’s one of them. This one is tiny squares (about 11cm) in sock yarn, in mosaic knitting technique. I bought some black from Bendigo and all the rest is my leftovers and minis. I’ll be sticking to a blue-green palette here. I accidentally did two with the wrong needle size, which is why they are smaller. Oops. No stress, this is a long term project.

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Yesterday I finished two more squares, and obviously one of them is NOT for the blanket above. I’m also using Bendigo Woollen Mills yarn, but thus one is 10-ply not 4-ply. It’s a set of 20 different cable pattern squares. I’m using this purple, with a pale grey and some blue tones.

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I also have two other blankets on the go. One is also doable in heat, though not quite as good because it’s long strips, like half-scarves. But also I’ve lost the pattern. It must be here somewhere… The other is absolutely no good for this weather since it’s knit all in one piece, and it’s double knitting. This one’s also blue and purple, but with white for the main contrast. I want to get back to that one in winter.

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Knitting small things that don’t drape over you is the key, and it doesn’t have to be blanket modules. I’ve recently completed my Trilobite Hat and I’m currently working on another hat, the very popular “Sockhead Slouch“.

It’s important to me to have multiple projects on the go – some for interest and challenge and some for brainfog times. The trilobite was a bit complicated. I altered the basic pattern, and it has cables and various regions of different stitches. It was good fun, but required thought.

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The sockhead, by contrast, is a stretch of ribbing following by a long stretch of plain knitting. Even the decreases, when I get up to them, will be a very simple pattern. It takes almost no thought and the yarn is very pleasing: Bleating Art sock in “Black Lagoon”. I think this will be a quick one, since I’ve decided that knitting in the afternoon should only be the brainless kind. I may have to start knocking out hats and scarves for charity. Anyone want a hat?

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Counter-resolutionary

It’s still January, so it must be OK to discuss resolutions. I quietly enjoy being contrarian in my resolutions. Last year I had “watch more daytime TV” on my list, which is a nice one since it doesn’t sound good. This year I don’t think I wrote these down, so I should maybe go edit my new year post, but I have “go to bed later” and “drink more booze” in mind.

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Last year’s was quite a success. I have never liked to watch TV in daytime, but I managed to bring my TV watching time forward to 4pm. For some time I was watching Supernatural on Stan, but now I’ve shifted to Critical Role on my laptop. The good thing about this is that I’m knitting, not playing pointless computer games. The only caveat is that I need to make sure I have some brainless knitting on hand, because 4pm is a major slump time for me. I’ve just finished one and now I need to wind yarn for the next and don’t wanna too tired.  *heaves dramatic sigh*

Going to bed later is actually a thing that happened while the Bloke was in New Zealand last year. Without him around giving structure to the day, I stayed up past my bedtime several nights… and much to my surprise, it helped. I have been sleeping much better since changing lights-out from 10.30pm to 11pm. So, that’s a random surprise and well worth keeping. I still go to bed at the same time, but now I read or learn Japanese until 11pm. I use a yellow clip on filter on my glasses to keep the blue screen light at bay, and that may also help.

Drinking more booze is another contrary-sounding kind of resolution, but really I am a very light drinker. And I have all this delicious booze on hand, some single malt whiskies dating back from even before I got sick. I should drink them! But also I have some sweet things like Pedro Ximinez sherry and Amaretto di Saronno, which work pretty well to satisfy my after dinner sweet tooth. And I’m pretty sure it’s better for me to have a small glass of something sweet than a big bowl of ice-cream. Not that I’m going to give up icecream, but perhaps a bit less. Keep it for bad days and weekends, maybe.

So, there, I amuse myself. The counter-resolution is, in reality, a thing about being more healthy while doing things that most people consider less healthy. But we won’t dwell on that, because it’s so much more fun to think about it as being contrary.  Go Falstaff!

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Revenge of the Bride of Snippets

The problem about being an ME/CFS blogger is that most of the time you’re too tired to be an ME/CFS blogger. Because you have ME/CFS.

I’ve been amusing myself with lines like “I haven’t had a drink ALL YEAR!” or “I haven’t had a shower ALL YEAR!”. I have showered by now, and had some of my Xmas boozeamahol, but I still haven’t left the house ALL YEAR.

I thought I would be more social online when the Bloke was away a couple of months ago, but it seems that extra fatigue eats my social spoons. So just when you’re in need of extra support you’re incapable of reaching out for, or accepting, the social support.

Sometimes my dreams are oddly specific. Just recently I dreamed that I was staying in a hostel and somebody stole my passport, ipod, a jewelled hair clip and a pen. And nobody could or would do anything to help me. So when I woke up it was obvious that ME/CFS  stole my travel, my music, and my hair. Not sure about the pen – work maybe?

Speaking of travel and music, I would have loved to go to Sydney last week. Though perhaps “loved” isn’t the right word for it, since I wanted to go to a funeral. I am very grateful to the internet and specifically the person who live-streamed it so I could attend virtually. A hall full of choristers singing hymns in tune with flashy descants, and mourners in Hawaiian shirts was exactly right for the occasion: our dearly departed was the original model behind Auntie Mark in Kerry Greenwood’s Murder and Mendelssohn.

Are we tired of Downfall parodies? Maybe. But this one is good. “What about the part where I climb Kilimanjaro?” indeed!