#LongCovid Scientific Consultant
Hon Research Fellow, Lund Uni
PhD Nutrition & Metabolism
Tweets: nutrition▪health▪all-things-science▪activism▪#TeamClots
3 subscribers
Sep 12 • 5 tweets • 1 min read
My prediction: 1. Once MCAS is properly recognised, we'll find theres also platelet activation syndrome and basophil activation syndrome
2. MCAS, PAS, and BAS will likely be commonly comorbid
3. Significant symptom overlap
4. (Luckily) Treatment overlaps
As an example: many MCAS patients respond very well to aspirin (me 🙋🏻♀️). Ofc this is likely in part from blocking prostaglandins, but it also inhibits platelet activation
Sep 8 • 34 tweets • 6 min read
SIADH and hyponatraemia: why does it matter?
This paper is absolute fire 🔥🔥 and some of the core points are 100 % relevant to SO MANY diseases🧵academic.oup.com/ckj/article/2/…
SIADH = syndrome of inappropriate anti-diuretic hormone. In SIADH, patients (usually) have high ADH (also called vasopressin). A problem with this is that patients store too much water which dilutes blood, causing too low blood sodium (hyponatraemia). Worst case = fatal
Sep 2 • 10 tweets • 3 min read
When doctors say "i PrAcTicE eViDeNcE-bAsEd MeDiCiNe", what they really mean is...
1. Picking and choosing what evidence they approve of 2. Not even reading the latest guidelines 3. Refusing to read scientific literature (and being pretty shit at understanding it anyway)
4. Psychologising and gaslighting patients instead of admitting they don't know 5. Arguing against and ignoring legitimate experts, which has literally led to deaths,.e.g.:
Most doctors accept endometriosis is an inflammatory condition even if inflammatory markers are not raised
Yet when i speak to neurology or rheumatology they deny i have any inflammation because my inflammatory markers arent raised
So i simultaneously have an inflammatory condition, yet i dont have any inflammation 🧐
Jun 22 • 6 tweets • 2 min read
Mitochondria Are More Than Powerhouses—They’re the Motherboard of the Cell
Fascinating piece by @MitoPsychoBio. Makes me wonder if the energy problems in ME are related to cristae alignment/mito-mito communication 🤔🧵scientificamerican.com/article/why-mi…
I.e. Picard states that healthy mito help out unhealthy mito, and thats why things like exercise can be good, as it forces everything to work together. But if that communication path is shut off, i would guess adaption to exercise/stress would not be possible
May 28 • 6 tweets • 1 min read
POTS not being immediately life threatening i think is one reason (in combination with others) there is little interest in it medically. However, this is a very narrow view of life and death - and not just because it ignores the life ruining impacts of POTS 🧵
But also the fact it *can* impact life and death decisions.
For example: my tachycardia in A&E was very normal for me. "Thats just POTS"...whilst im haemorrhaging internally.
May 11 • 8 tweets • 2 min read
Something underappreciated with chronic illness is the amount of things constantly going on *even on better days*.
For example, on a lower symptom day, having a conversation can mean:
🦵🏻 My legs start tingling and internally vibrating
🙌🏻 The numbness in my hands gets worse
🧵
👂🏻 Pulsatile tinnitus gets worse
🫁 Breathing becomes harder
💓 My heart beats faster and i can often feel palpitations
🤢 Nausea kicks up a notch
😵💫 Dizziness gets worse
💪🏻 My muscles twitch and sometimes spasm
👋🏻 I might start tremoring
😨 My energy drains and fatigue sets in
May 7 • 5 tweets • 1 min read
We often say a difficulty with illnesses like ME and POTS is they span multiple body systems so they dont have a "home" in a siloed medical system.
But medicine created its own categories that nearly always include multi-system diseases.
For example:
MS: autoimmune, neurological
Type 2 diabetes: immunological, metabolic, endocrine
Im glad to see more doctors speak about things like #MECFS #POTS #MCAS #fibromyalgia etc but it also worries me because its seems many have a rather superficial understanding. For example, i quite often hear such doctors speak about MCAS only in terms of histamine
#medtwitter
They talk about the more obvious histamine related symptoms like hives. I heard one dr say one of the "most common" symptoms is dermatographia (skin writing) and im really not sure thats the case (both our samples may be biased though)
Mar 15 • 18 tweets • 4 min read
It's #LongCovidAwarenessDay2025 and these are the messages i want different groups to understand:
Medical professionals:
Our best healthcare teams dont have all the answers, nor do they pretend to. Instead, they read the evidence, they listen, they believe, they monitor 🧵
They take risks (with informed consent), they keep accurate notes, they advocate, they wear respirators, they accommodate (e.g. low lighting, allowing us to lie down, or have online appointments and home tests), they care.
Jan 22 • 45 tweets • 8 min read
Ive just finished watching Prof Evans and it really seems to me that the purpose of the inquiry has been lost.
The point of an inquiry is to scrutinise *and* learn lessons to do better in the future.
Nearly the entirety of Evans interview was saying how great everything was/is
Clearly things DO need improving otherwise we wouldnt have the need for a vaccine injury charity to be set up to support patients with vaccine injuries.
We wouldnt be waiting for basic tests/diagnoses, we wouldnt be censored, and we wouldnt be battling VDPS
Nov 27, 2024 • 12 tweets • 2 min read
Had an appointment with my best dr today. The only dr i fully 100 % trust. Some points for #medtwitter:
1. I trust him because he believes me, first and foremost
2. He knows i struggle being upright and with light so he turns the lights down & preps a couch for me to lie on
3. He knows i am clinically vulnerable so wears a respirator, and if med students/whoever are observing, he gets them to mask up too. Also has the window cracked for ventilation
Nov 22, 2024 • 7 tweets • 2 min read
Update to the @NHSScotland #POTS pathway disaster:
In EDIT 7, I went through a bunch of emails & one showed Dr Claire Taylor was invited to help on the pathway. I wanted to know Dr Taylor's involvement so I FOI'd any emails between her & NSS/POTS groups👇🏻 dontbelievehype.co.uk/covid-%26-vacc…x.com/angryhacademic…
As you will see in the blog, Dr Taylor had no substantive involvement. Having seen the pathway, this is no surprise. She was clearly unable to attend meetings due to her clinic. But what is maybe a surprise is that Dr Taylor absolutely hammered NHS Lothian's approach to POTS
As some of you may recall, I did a n-of-1 study on therapeutic phlebotomy (venesection). The results were surprising...🧵
#postvac #longcovid #chronicillnessdoi.org/10.31219/osf.i…
Brief recap on methods:
This was a blinded randomised placebo controlled n-of-1 trial. What does that mean?
Blinded: this means I did not know if I was truly getting blood taken, or if it was sham (placebo) phlebotomy
Nov 1, 2024 • 11 tweets • 3 min read
A NEW SIGN FOR THE DETECTION OF MALINGERING AND FUNCTIONAL PARESIS OF THE LOWER EXTREMITIES (Hoover, 1908)
This is the paper that defined the Hoover's sign. Let's delve in...sci-hub.se/10.1001/jama.1…
It starts that this is a sign Hoover as seen in 4 (yes, FOUR) patients, but he feels justified in saying it's VERY IMPORTANT
🧪 Main mechanism: Unlike antihistamines, which block the histamine receptor as their primary mechanism of action, mast cell stabilisers help prevent mast cells from spewing out their contents ("degranulation")
Oct 6, 2024 • 19 tweets • 4 min read
Mast cell activation syndrome (#MCAS) & histamine intolerance are common features for many #longcovid & #PostVac patients. 🧵on antihistamines which are commonly used in MCAS & histamine intolerance. (I will do another post on mast cell stabilisers) lc-sc.co.uk/bodily-systems…
There are different types of antihistamines with different actions, but they all block a histamine receptor so histamine can no longer attach to the receptor & cause chaos. I.e. antihistamines do not stop histamine production, they just stop histamine from working properly
Oct 5, 2024 • 9 tweets • 3 min read
As #microclots are a common part of #longcovid #PostVac chat, different treatments are also a common talking point.
Some treatments do not work exactly as people realise though. A quick rundown of the main mechanisms of different clot-targeting therapies... 🧵
#teamclots
Direct oral anticoagulants (DOACs):
💊 Examples: Apixaban, rivaroxaban
🧪 Main mechanism: These work by blocking part of the clotting cascade.
❌ A common misconception is DOACs *break down* blood clots, when actually their main role is to help prevent clot formation.
Sep 12, 2024 • 7 tweets • 2 min read
I think when #chronicillness patients notice new symptoms, people think we are being dramatic.
But really what we are noticing is new malfunctions with unknown consequences, and we're getting a reminder of just how broken we are.
To give an analogy... 🧵
#medtwitter
I have had REALLY shit cars before, and one car that would keep going no matter how broken it was (i.e. a really good car).
With the good car, when a new thing happened (the engine light came on, it made a weird noise, or whatever) i knew i had nothing to worry about
Aug 22, 2024 • 8 tweets • 3 min read
Neurological autoimmune diseases following vaccinations against SARS‐CoV‐2
"Cases included VITT with CVST, CNS demyelinating diseases, inflammatory peripheral neuropathies, myositis, myasthenia, limbic encephalitis & giant cell arteritis" (n between 1-8)ncbi.nlm.nih.gov/pmc/articles/P…
Spectrum of Neurological Complications Following COVID Vaccination in India
