@NobleRingleader @elizaclove I’m not sure which thread but yes, this is all very ‘normal’ for severe ME and LC. And it doesn’t cause abnormalities in standard lung and heart tests. What’s going wrong is in the microvessels that don’t get tested in medical tests, but the daily shows up in research grade tests @NobleRingleader @elizaclove There’s also a high likelihood that it’s partly caused by microclots, which again, doctors don’t test for - they can test for it but they don’t know this as the methods are very new.

VQ scans and SPECT scans can detect these microclots and vascular problems in the lungs but…

A lot of us suffer with slow gastric motility and constipation, for some this progressed to gastroperesis.

One thing I don’t see mentioned much around this, is that it can be caused by having too many methane producing bacteria in the gut: methane slows gastric motility. This has been shown experimentally and in observational studies enough to be considered causal now.

If you suffer from lots of gas and bloating too, then it’s a good bet methane could be the cause of your constipation.
pmc.ncbi.nlm.nih.gov/articles/PMC66…

For those who relied on Dr Taylor for prescriptions, this thread will share other options:

1. For LDN the best source is to get it prescribed by Dickson’s Chemist here shop.dicksonchemist.co.uk/the-ldn-privat… x.com/markmooch/stat… 2. Dickson’s also now run an MCAS clinic and cover MCAS meds, new appointments can be booked here:

shop.dicksonchemist.co.uk/product/mcasin…

We need more research on this:

“A simple nasal spray with antihistamine is not only effective for acute COVID but can also protect against Long COVID.
Placebo-controlled study with n=259”

https://twitter.com/c_scheibenbogen/status/1876680928766128359

Seriously though, just look 👀 at these statistics:

Zero people who had the antihistamine spray sought medical attention after infection vs 48 in the placebo ‼️

One person who had the antihistamine spray reported reduced daily activity/work vs 38 in the placebo ‼️

I’m seeing a lot of confusion about ‘risk’ versus cause.

The DecodeME results do NOT show that ME is a genetically caused disease.

There is no gene that causes ME.

They do show certain genes can increases our chances of developing ME. There will be people with very few of these genes that still get ME.

And there will be people (like our own relatives perhaps) who might have a lot of them, but never develop the disease.

It is not diagnostic, and it is not genetically caused.

Ok, so I do have an ultrasound machine and I have been using it. I can take notes here if anyone wants to bookmark this thread 🧵

https://twitter.com/melrobuilds/status/1942581021448225197

This is the machine I have that’s closest to the one sold in the US

I’ve only used the low setting which provides a low intensity pulsed ultrasound (LIPUS)

tensmachineuk.com/ultrasound-mac…

Just tried my clip on phone microscope 🔬 to check my nail food capillaries and it’s worked incredibly well. This is amazing.

@BanhamGemma @renesugar @IsabelRamirezRD @dbkell @PutrinoLab @healingfromlc

https://twitter.com/PeeNee2/status/1928071726606287239

This was my thumb on the left hand. A lot fainter and sparse looking to my eye.

Low intensity pulsed ultrasound can also help inflamed guts:

Study 1 on mice 🐁 “transcranial LIPUS stimulation can simultaneously alleviate DSS-induced neuroinflammation and colonic inflammation”

.pmc.ncbi.nlm.nih.gov/articles/PMC11… Study 2 (also on mice) shows it works both ways (treat gut or brain and help both)

“our results indicate that abdominal LIPUS stimulation attenuates LPS-induced colonic inflammation and neuroinflammation”

.pmc.ncbi.nlm.nih.gov/articles/PMC10…

@BocaHudson @SouthwestAir @FAANews @FlyTPA @FoxNews @cnnbrk @MarkWilsonTV Brian, that’s completely normal. Most wheelchair users can walk for short distances, maybe just a few steps, but they can standup and get out of the chair. We’re not ‘wheelchair bound’. It’s always been that way, but people assume incorrectly that wheelchair users can’t stand up. @BocaHudson @SouthwestAir @FAANews @FlyTPA @FoxNews @cnnbrk @MarkWilsonTV I can walk between rooms in my house, so I can stand up and walk to a chair as well, but I can’t walk more than 50m. I need my wheelchair to get anywhere outside of the house. I am not strong enough to propel myself either, I need someone to push it. Please delete your tweet.

@Bettje37 @SasBoekenwurm Being upright (even sat) can be a form of stress on the body. I can only sit upright for certain periods of time. But I don’t rest in bed unless it’s absolutely essential. I lean on my side on the sofa, reclined so not flat but not upright, legs up. @Bettje37 @SasBoekenwurm That works for me but not everyone, some have to be completely flat for extended periods of time.

But if you had covid recently, you will be depleted in various things, glutathione especially and often zinc, B12, taurine etc,

I’ve often tried to make clear here how important choline is for health.

Almost none of us get enough of it by diet alone, and it is so crucial for so many bodily systems, from cells to liver & brain health.

Primarily found in egg yolks 🍳 make sure you get your choline!

https://twitter.com/geneticlifehack/status/1861506781933117589

⬇️

https://twitter.com/naomi_d_harvey/status/1836703110653227212

“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.

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…

https://twitter.com/naomi_d_harvey/status/1838957681240920140

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.

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.

I don’t think enough people know this:

Please be aware of what you’re taking is anticholinergic.

https://twitter.com/naomi_d_harvey/status/1834983334553784619

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

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.

@1goodtern That’s fascinating.

This is where we need better terms for exercise related issues however, as in true PEM (the ME/CFS kind for which the term was developed) people’s ability to reproduce the activity reduces with each consecutive day. @1goodtern The 2-day CPET is the gold standard measure for identifying PEM and it clearly shows reductions in the bodies ability reproduce the activity in day two in pwME that does not occur in other tested diseases, even those associated with exercise intolerance like heart failure.

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

amazon.co.uk/orthostatic-Ta…

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.

“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”

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-…