Zoologist. She/her. 22yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
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Aug 24 • 5 tweets • 1 min read
In PEM after 15-20 min laptop time working on PIP form two days ago. Presumably, that laptop time pushed me over the anaerobic threshold & caused damage. Muscles hurt all over, hands weak and painful, hard to chew and swallow. Decided to check my lactate #TheAcidTest
I’ve had magnesium this morning (which lowers it) & my normal resting lactate for an hour after eating with Mg on board should be 2.1mmol/l, elevated but not enormously.
Today? 4.5mmol/l 😒 confirms my mitochondria are struggling more than usual, & validates why I feel so bad.
Jul 17 • 7 tweets • 2 min read
Medical alert card for #MEcfs along with lanyard
Will post links to POTS and other cards in reply etsy.com/uk/listing/120…
Medical alert card with lanyard for #POTS
Hi 👋🏻 I seem to have gained a few new followers lately. So a brief introduction seems due!
I’m a research scientist with a specialist topic in companion animal behaviour & welfare, skills in veterinary epidemiology & psychometric tool development.
I’m also chronically ill ♿️
I’ve been chronically ill with #MyalgicEncephalomyelitus since a virus destroyed my health aged 15. I also recently learned I have #POTS too.
I’m a patient-expert in ME and my body reacted so badly to my Covid vaccines that my ME is now Severe. I cannot work & am housebound.
Jun 24 • 7 tweets • 2 min read
“Our results demonstrate that pantethine, which is well tolerated in humans, was very effective in controlling SARS-CoV-2 infection and might represent a new therapeutic drug that can be repurposed for the prevention or treatment of COVID-19 & long COVID” nature.com/articles/s4159…
“cellular expression of the viral spike and nucleocapsid proteins was substantially reduced, and we observed a significant reduction in viral copy numbers in the supernatant of cells treated with pantethine”
Jun 22 • 20 tweets • 5 min read
Brief thread 🧵 on potential ways to mitigate against glutamate exitotoxicity in #MEcfs and #LongCovid
Glutamate has long been known to be involved in the pathology of #MyalgicEncephalomyelitis and more recently in Long Covid.
Recent neurology research confirmed there is significantly elevated glutamate in the brains 🧠 of pwME and LC .amjmed.com/article/S0002-…
Jun 21 • 13 tweets • 3 min read
There are sometimes meds or supplements that make people feel worse at first. Sometimes.
These usually will be known about & predictable, as they work by breaking biofilms or can trigger deficiencies in other things when one deficiency is addressed (B12 is a good example).
In some cases, the worsening is a sign that what you’re doing is needed.
But there’s *huge* caveats here.
Some ppl are so severe, they can’t risk any slight worsening.
Some worsening’s are not safe or expected & should never be pushed through.
How do you tell which it is?
Jun 13 • 14 tweets • 4 min read
Tyrosine 🧵
Tyrosine is an amino acid used to make dopamine, adrenaline and melanin.
Under situations where adrenaline is being released more, like under high stress, it can become depleted, thus reducing dopamine production.
ncbi.nlm.nih.gov/pmc/articles/P…
I can’t read the papers in detail unfortunately, but from what I did read, supplementing Tyrosine is not expected to increase adrenaline or dopamine production - unless you’re depleted already.
So, it’s considered useful to supplement under high stress conditions only.
Jun 4 • 15 tweets • 4 min read
Grape seed extract 🍇
Seriously, get it in your cupboard and if it’s ok for you to take (I haven’t found any proven interactions though), use it for Covid prevention or when infected
200-400mg of 95% OPC extract reduces viral load & stops the virus from replicating by 50%
Other very strict laboratory studies of extreme bed rest (beyond what most people ever experience) show that the metabolic consequences of it do not trigger anything like the diseased state we see in ME or Long Covid.
The presenters are, I’m afraid, showing their ignorance.
“EA reduces gene expression levels of TNFα, IL-6, and chemokine C-C motif ligand-2 secretion in LPS-stimulated macrophages and adipocytes”
Link ncbi.nlm.nih.gov/pmc/articles/P…
Apr 15 • 6 tweets • 2 min read
📢 “irisin protects against neuroinflammation by acting directly on glial cells in the brain”
Irisin is a peptide released by muscles after exercise.
It’s been identified as one of the reasons exercise helps cognition & works directly on microglia
hsci.harvard.edu/news/hormone-i…
Given it’s released after exercise, people with #MyalgicEncephalomyelitis and #LongCovid with PEM may surely be considered to be low in circulating Irisin.
Importantly: “soluble irisin…is sufficient to confer the benefits of exercise on cognitive function”
Apr 10 • 10 tweets • 2 min read
There’s a *very* pragmatic and important reason why ME/CFS must be included in this.
At least 50% of pwLC meet the diagnostic criteria for ME. We know that.
With the end of funded covid testing, Long Covid as a diagnosis will dwindle. Ppl are already not getting LC diagnosed.
Moving forwards, more of those with covid induced-ME/CFS will either have no diagnosis or will be diagnosed with ME/CFS just as anyone else who develops it from an unknown cause.
Mixed in with them will be those with non-covid-ME/CFS from EBV etc that’s still happening.
Apr 8 • 9 tweets • 2 min read
This looks MUCH better than the usual very limited scales.
I’m glad the Moderate group isn’t quite so wide and I like the expansion of the Very Severe into sub categories.
Oh and no wonder it’s good, co authors include Janet Dafoe, Whitney Dafoe and Ron Davis 😊
This is a marked improvement on previous severity groupings for #MEcfs
Mar 25 • 7 tweets • 2 min read
Check your choline intake: are you getting enough? #MEcfs #LongCovid
In people who have a variation of the PEMT -744 gene with one change from G-->C (rs12325817) 78% developed organ dysfunction when fed a low choline diet
pubmed.ncbi.nlm.nih.gov/16816108/
Choline deficiency is more likely in those with folate or B12 deficiency since choline is utilised more for methylation in the absence of those B vits.
Lack of choline leads the body to cannibalise it’s own cell membranes to keep blood levels above 50% ods.od.nih.gov/factsheets/Cho…
Mar 22 • 16 tweets • 3 min read
Revisiting this in depth metabolomics paper on ME/CFS.
Of the 6 such studies “common threads in the results from all these studies are decreased levels of phospholipids and metabolic dysregulation” ncbi.nlm.nih.gov/pmc/articles/P…
“we observed decreased levels of phospholipids, especially plasmalogens and phospholipid ethers”
My takeaway: Phospholipids may be crucial for pwME to supplement, even if they don’t touch symptom levels, but for basic cellular support.
Mar 14 • 4 tweets • 1 min read
@cstroeckw I think it could. I’ve just started a trial on myself. But there are good reasons why some pwME could react v badly also. It carries a risk of metabolic acidosis via pushing mitochondria into anearobic activity. Many of our mitochondria already do this too much anyway.
@cstroeckw The main risks for a bad outcome on Metformin are 1) hypoxia and 2) poor renal clearance of lactate. We know from #TheAcidTest some pwME have poor lactate clearance as standard, and may have chronic hypoxia from poor blood flow.
Feb 8 • 17 tweets • 3 min read
Every now and then I find something about research on #MyalgicEncephalomyelitis that I didn’t know.
This one is particularly astonishing in terms of remmision events such as @remissionbiome are creating.
Has relevance for #LongCovid toome-pedia.org/wiki/Interfero…
This research also shows that most of those with ME who ‘recover’ are in fact not recovered but remain at high risk of relapse. Which may prove the same for Long Covid.
So, highlights pasted in below:
Jan 23 • 5 tweets • 1 min read
I don’t think I mention this often enough as I see people describe this quite often:
If you get night sweats and adrenaline dumps at night, it’s very possibly caused by hypoglycaemia (low blood sugar).
When suga drops, adrenaline is released to compensate.
#MEcfs #LongCovid
Blood sugar regulation is commonly messed up in #MEcfs #LongCovid #Fibromyalgia and #POTS
🚨**You can have sugar problems in these conditions even if your GP has done a HbA1c test and says you’re fine**
You need to use a continuous glucose monitor for a week or two to check.
Jan 17 • 5 tweets • 2 min read
Very interesting study here on the metabolic and muscle consequences of extreme bed rest.
For 60 days the participants weren’t even allow to sit up, or use a pillow to prop up, did they develop ME/CFS?
““a 60-day strict 6° head-down bed rest. No pillows were allowed except for a thin cushion when participants lay on their side; one shoulder always had to touch the mattress, and all daily activities including personal hygiene were done in the −6° position”
Oct 9, 2023 • 6 tweets • 1 min read
This disease is like when someone is help captive & deprived of so much that when their captor eventually gives them just a grain of kindness & gives them back the smallest of privileges, like being able to clean themselves, or use a toilet, the captive is so grateful for it…
that they become subservient & accept their situation.
It takes so much, repeatedly, that we lower and lower what standards we’d accept as ‘good’ & be grateful for them as though if we aren’t grateful, those small privileges will be taken away again #MyalgicEncephalomyelitis
Sep 13, 2023 • 13 tweets • 2 min read
Stumbled on this paper, which seems particularly relevant to #LongCovid form of #MEcfs given the findings from the NIH study showing the role of ER stress induced mitochondrial dysfunction in the disease.
Few quotes below ⬇️ sciencedirect.com/science/articl…
“During evolution, SARS-CoV-2 have evolved strategies to escape immune responses by targeting ER and mitochondria.”
“COVID-19-related ER-mitochondrial stress is a major player in the promoting of cytokine storms and ARDS.”
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