I Have No Idea What I’m Doing

flat800x800075f.u2

Really. No idea. And it’s totally not my style. But I’m doing it anyway.  It kind of kicked off from here but it’s a thing I’ve been considering on and off for a while. So anyway, I’m going to take all of these and more in May. Since I have no idea what I’m doing, I’m just going to take one of each pill, or the recommended dosage on the label. Whatever.

So here it is. The list is:

  • Curcumin
  • Probiotics
  • Co-enzyme Q10
  • Acetyl L-Carnitine
  • Vitamin C
  • Vitamin D
  • Iron
  • B6, Zinc & Magnesium
  • Vitamin B12
  • Folic Acid (B9)
  • Vitamin B complex
  • L-tryptophan
  • Huperzine A
  • Fish Oil

img_20190501_160336

Sample size N=1. No control. Subjective assessment only. Popping more than a dozen pills a day, and that’s not even counting prescriptions and all the stuff I use to try to sleep better. What could possibly go wrong? Down the hatch!

img_20190501_160856

Frankly, I expect I’m just wasting my money. But people do report improvements with some of these, and maybe I might get lucky.  My plan is one full month’s trial, and if it doesn’t make any difference then screw it. I feel kind of stupid doing this, but imagine if some of it works and I never tried it?  What the hell.

On Taking Supplements

skepticalmemedone

I’m not a fan of alternative medicine. I don’t want snake oil. I get my nutrients from food, and since I eat a lot of fruit and veg I generally think vitamins are a big fat waste of money. In the case of the water soluble ones, it’s quite literally pissing money away. I except vitamin D and iron, since I have had medically diagnosed deficiencies in both. The iron is odd, since I do eat red meat, but the blood tests are clear.

But ME/CFS does weird things to you. Like, when I read a headline saying Herbal Drug Kratom Linked to Almost 100 Overdose Deaths, the CDC Reports, I’m partly drawn in by smug confirmation bias, but I leave going “how can I buy this stuff?”  The piece explains that it’s an opioid-alike substance, and most of the deaths are in people with prior form for opioid addictions, so I don’t see myself at much risk, and if it would help me to a good night’s sleep I would fuckin’ shank a bitch.

I’m not actually going to seek that one out, but I will try out other alternative medicines. Even though ingesting uncontrolled quantities of unknown chemicals of unknown activity  in unknown dosages sounds like a bad idea in general.  Take this example: 4 Natural Supplements That Are As Powerful as Drugs. As powerful as drugs? Natural or not, they ARE drugs – just not refined, measured and fully clinically tested.

84d0717126c93ea07334c3bd3a05ac1c

But hey, that curcurmin sounds good. Maybe I should try it. And while I’m shopping, how about that probiotic sample pack and oh look, a sleep aid I haven’t yet tried. And did you see this jilungin bush herbal tea for sleep? Bring it on! What have I got to lose? (Yes, I know.)

It’s clear that ME/CFS comes with a lot of nutrient deficiencies. What is not clear, is why that is so. Is it cause or effect or coincidence? In the case of vitamin D, it’s definitely an effect: I don’t get out much. No morning cycle rides to work; no long walks on weekends, no bush camping trips, means not much sunshine to make the vitamin D. But the others? And even if it is an effect, will supplementing do any good? Who knows?

If only there were a few decades worth of  research and clinical trials behind me, instead of a few decades of denial and neglect of ME/CFS patients. But this is not so. We are currently stuck with no treatment while the basic research is just beginning. We’re left with our social media anecdata, and Dr Google, and personal uncontrolled experiments with n=1.

I was considering trying the whole shebang for a while. L-carnitine and CoQ10 and vitamins and minerals galore. It could be an expensive exercise, but for a couple of months trial it could be worth it. I decided not to do that when I got pneumonia, as any improvements could be confounded with the recovery. But by now I think I’m as recovered as I’m going to be – which is not as much as I’d like to be; I think I have lost ground. But anyway, perhaps next month I’ll give it try.

 

 

?

 

 

 

 

More Linky Oddments

Hanging out in the tabs at the moment, there is the usual collection of things that I think “Hey! This could be an interesting blog post” and then never get around to actually making a full post about. So here’s the short stuff.

British group ME Action has a post on how GET/CBT therapy is harming people with ME/CFS. It’s the results of a large study of patients in the UK, and almost everyone who tried it found it to be a failure. That’s thousands of people harmed, and all of us in danger until this terrible idea is defeated.

Another British piece, from the Royal College of Physicians, discusses how the most important thing for many patients is having a doctor who believes their disease is real – and how many doctors have no idea. A doctor who fell ill writes:

I had a vague notion that ME/CFS was an illness related to deconditioning. How wrong I was. The NICE guidelines had perpetuated my misunderstanding of ME/CFS by recommending Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET).

 

From my experience of ME/CFS there was no psychological component whatsoever, besides which exercise, if anything, was making me worse not better. I was not deconditioned or frightened to exercise. The symptoms were more consistent with a brain tumour or multiple sclerosis. The reality is ME/CFS is a serious, heritable, neurological condition …

And there’s a big piece in Medline (subscription required, but it’s free) on treatable aspects of ME/CFS. It’s mostly focussed on the orthostatic intolerance, which I do have, but the treatments are mostly about increasing blood pressure and volume. Since I have some mild hypertension this probably isn’t helpful for me. Damn. There’s some interesting stuff there on how our brains & bodies don’t respond to activity the same way as normal people, so it was still worth reading.

People with fibromyalgia, a common comorbidity with ME/CFS that I luckily do not have, might perhaps be treatable, and even cheaply! It’s possible that an old anti-TB vaccine may have curative effects.

Fellow Chronic Illness blogger Siobhan, also an Australian, has some tips on travelling with ME/CFS. I have used many of these ideas in the past. Another tip that is just now taking off is the Sunflower Lanyard, a signal to airport staff that you have a hidden disability and might need assistance. Link is to Heathrow, but it’s happening in other parts of the world too, and even spreading from airports to shops like Sainsbury’s.

sunflower-lanyard-350x233

Ars Technica has an interesting post on the physics of knitting.  Surprisingly, the material behaviour of knitted fabric hasn’t been much studied yet.

Also knitting,  I have this mitred diamond jacket pattern, not because I want make it, but because I was trying to find how to do a triangle.

 

I Made A Thing!

I am very pleased with my Thing.  I’m calling it a Crazy Mermaid, because the pattern base is Nereid, but I changed it in many ways. And also it’s a small tribute to an internet acquaintance who died recently with a brain tumour. In memory of Crazy Fish Lady,  Emma of Canada, I present:

img_20190412_122156

I really like it. The colour scheme, the way it twists and curls, the neat edging that makes it easy to hide all the ends. It’s a very pleasing piece. It’s made of two different yak blends, one with linen and one with bamboo. The bamboo is ultra-soft, and the linen is a tad scratchy but should soften with wearing and washing. Both yarns were bought locally, from I Wool Knit in Bungendore, for my 5 year “Knitiversary“. The owner, Barbara Gatzen,  mostly sells online, but does local pickup by appointment. Bungendore is a nice outing – not too far to drive for a bit of lunch and some shopping. (Though she’s moving to Wamboin soon.)

Although I wasn’t particularly close to Emma, I felt considerable good will towards her. She was a Ravelry friend, a regular participant in my favourite group, and I recall last year searching for a crazy fish themed cake gif for her birthday. I also remember her as cheerful and positive, even just before she went in for surgery. Many others were closer – especially the dog lovers, which I am not. She was known for her pictures of doggo Chai in hand knit jumpers. Well, Emma, this one is for you and the amazing Monthly Thread community. So long, and thanks for all the fish!

 

 

 

 

 

I don’t want to write this post.

I don’t want to blog about being sick.

I don’t want to finish off my half-dozen unfinished posts about ME/CFS and being sick.

I don’t want to participate in the Facebook ME/CFS forums, about people coping with being sick, and not wanting to be sick, and being desperate about being sick.

I don’t want to read books about being sick.

I don’t want to read books about better coping with being sick.

I don’t want to read websites about other people being sick, and coping with being sick and not wanting to be sick..

I don’t want to watch documentaries about being sick.

I don’t want to do online reading about the latest updates in ME/CFS research.

I don’t want to THINK about being sick.

DON”T WANNA!

ec5b215945951b0a511ae156918ee282

 

But there’s nothing to do but play the hand that’s been dealt.

BRB playing Candy Crush forever.1

 

 

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.)

Screenshot 2019-02-20 09.05.31

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.

 

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.