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

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

Type 1 diabetes: autoimmune, endocrine, metabolic

Stroke: vascular, metabolic, neurological

Crohns: autoimmune, gastrointestinal

Antiphospholipid syndrome: autoimmune, haematological, metabolic

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)

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.

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

https://twitter.com/ukcvfamily/status/1882151126717337976

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

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

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

Latest paper!
Venesection for chronic illness: N-of-1 blinded randomised controlled trial


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

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

I previously explained how antihistamines work: x.com/angryhacademic…

This post will talk through different mast cell stabilisers, which are also common medications for mast cell activation syndrome (MCAS)

Blog: lc-sc.co.uk/bodily-systems…

#longcovid #postvac #MCAS 💊 Examples: Sodium cromolyn, ketotifen, vit C, quercetin, luteolin

🧪 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")

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

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.

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

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

"We report...primary CNS demyelination, CVT, GBS, VITT, cranial nerve palsies, primary cerebral hemorrhage, vestibular neuronitis, CIDP, generalized myasthenia,& seizures"(n = 1-4)thejcn.com/pdf/10.3988/jc…

If i was going to write a review on #longcovid aimed at guiding clinicians, i would make two points:

1. There might be a unifying thing that "is" long covid but if that exists, we dont know what it is yet

🧵

#medtwitter 2. Failing knowing point 1, we should treat what we do know can be caused by COVID and/or the vaccines, e.g.:

Want help navigating the #longCOVID #postvac and related #chronicillness space? Want evidence, rather than be sold another protocol?

If so, I aim to help bring some clarity to things!

Book an appointment:
✉️ harriet@lc-sc.co.uk (🚫please no DMs) lc-sc.co.uk/book-an-appoin…


Why trust me? 🤔

I was a NHS COVID scientist researching immunity as part of the UKHSA SIREN study, and I am a vaccine-induced long COVID patient so I understand the lived experience and the science. Read about my journey here: lc-sc.co.uk/about-me

It's even cooler than this: lying down shunts blood towards the head. This tells sensors in the brain you are overhydrated and triggers changes that make you pee more = lower blood volume

#POTS

https://twitter.com/broadwaybabyto/status/1796021829032702086

This is most clearly seen in (models of) microgravity where blood goes to the head enough to cause the forehead to swell by ~7 %, whilst shifting ~1 L fluid out of the legs, triggering diuresis

Absolutely essential reading for #MedTwitter 👇🏻


#MECFS is more prevalent than MS, HIV, Parkinsons, etc. It would utterly absurd if medical professionals knew nothing of these diseases, yet this is the situation with ME

#MedEd @bmj_latest bmj.com/content/383/bm…

https://twitter.com/Naomi_D_Harvey/status/1782762286404239837

Further resources:
@NICEComms guidelines:

Excellent paper explaining pathophysiology:

Its NOT deconditioning:

ME-pedia:

Easy read blog: nice.org.uk/guidance/ng206
sciencedirect.com/science/articl…
…nslational-medicine.biomedcentral.com/articles/10.11…
me-pedia.org/wiki/Welcome_t…
lc-sc.co.uk/diagnoses/f/my…

I dont think #POTS experts realise how all-consuming the first line treatments can be:

🚰Drink loads of water...that you can't retain because part of POTS is water-retaining endocrine dysfunction (and going to toilet every 30 minutes with orthostatic intolerance is a breeze 🙄) 🧦Wear compression garments...which are ridiculously hard to put on (especially in those with energy limiting comorbidities like ME), and are incredibly uncomfortable, especially in the heat when you need them most

COVID-19 vaccines and adverse events of special interest: A multinational Global Vaccine Data Network (GVDN) cohort study of 99 million vaccinated individuals


Study showed increased risk of several conditions for Pfizer, Moderna, & AZ vaccines:🧵sciencedirect.com/science/articl… 🔴 = moderate/big increased risk;🟡 = small increased risk
AZ:
🔴GBS
🟡Transverse myelitis
🟡ADEM
🟡Thrombocytopaenia (incl idiopathic)
🟡Pulmonary embolism
🟡Cerebral venous sinus thrombosis (CVST)
🟡Myocarditis
🟡/🔴(depending on dose) Pericarditis

I'm very excited to announce that our survey data have now been published on a preprint:
Characterising long COVID-like COVID-19 vaccine reactions


I've already summarised key findings in the thread below 👇🏻
#postvac #vaccineinjuries #medtwitter zenodo.org/records/105820…

https://twitter.com/angryhacademic/status/1553025222332268544

Summary of key findings:
- Patients often had a high symptom burden
- Most tests came back normal, especially for mRNA recipients
- #MCAS and #POTS targeted therapies generally seemed most effective with few side effects
- Experience of healthcare was poor