“Rest didn’t help me, I rested for years and only gained more function when I started moving more again”
This is a common opinion ion encountered amongst pwME who have seen some functional gains. I would argue however that this perspective comes from a logical fallacy.
When we are judging what happens ourselves over time, we cannot be our own control.
In other words, we can do one thing, and cannot know what would have happened if we’d done differently.
This sort of thing means people often think something didn’t work when actually it did.
Sep 25 • 6 tweets • 2 min read
Dr Melvin Ramsay was one of the 1st advocates for #MEcfs who defined the disease based on 3 features proven today: 1) muscle fatiguability after minimal exertion + a delay in restoration of muscle power (2) cerebral dysfunction, & (3) impaired circulation en.m.wikipedia.org/wiki/Melvin_Ra…
Dr Ramsay advocated for use of objective testing with hand grip strength measurement on consecutive days to ascertain muscle weakness and a worse performance on day 2.
This test is simple, cheap, and accessible to most of us.
He was measuring PEM before it had the name.
Sep 24 • 5 tweets • 1 min read
What can be done for a person in the UK if they’re bedbound with severe ME but end up homeless?
Police/authorities don’t take it seriously when disabled people are abused by neglect.
But if someone who cannot care for themselves is pushed out of a house, where do they go?
There are people like this all over the world.
There is, to my awareness, no service, organisation or charity that is there to help disabled people escape abuse or find homes when they need constant care & become homeless.
They can’t go to standard shelters.
Sep 14 • 5 tweets • 2 min read
I don’t think enough people know this:
Please be aware of what you’re taking is anticholinergic.
This applies to basic antihistamines as well as meds like Ketotifen and travel sickness meds.
Side effects of taken in someone already low in acetylcholine can be very severe and include:
- slowed gut motility
- hallucination’s
- anxiety
- insomnia
- impaired cognition
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.
