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Harriet Carroll: Long Covid Scientific Consultancy Profile picture
Harriet Carroll: Long Covid Scientific Consultancy
@angryhacademic
#LongCovid Scientific Consultant Hon Research Fellow, Lund Uni PhD Nutrition & Metabolism Tweets: nutrition▪health▪all-things-science▪activism▪#TeamClots
3 subscribers
Nov 27 • 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 • 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
Nov 13 • 20 tweets • 4 min read
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
Nov 1 • 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 The sign I wish to describe is one which I have employed for the past two years. Although the cases observed number only four, I feel justified in attaching great importance to the sign because it is dependent on a normal function, which I find always exhibited in healthy persons and invariably present in the sound leg of patients suffering from hemiplegia or paresis of one leg due to some pathologic lesion.
Oct 7 • 26 tweets • 6 min read
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")
Oct 6 • 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 • 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 • 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 • 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

"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…
Aug 2 • 7 tweets • 1 min read
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.:
Jun 24 • 16 tweets • 6 min read
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…

Long Covid scientific consultancy poster reading: Helping bring clarity to long covid, covid vaccine injury and similar illnesses. Have you or a loved one had a COVID infection or vaccination, & things haven't been right since? Maybe symptoms like… (symptoms pointing to an outline of a body) Thirst, dry mouth or dry eyes Problems thinking clearly Tinnitus Palpitations Chest pain Difficulties exercising Exhaustion Insomnia Rashes Legs change colour or swell when you stand up Muscle/joint pain Fingers, arms, or legs tingling Food intolerances Nausea Breathlessness ...among many other things ...
Poster reading: Do you: Feel unsure about what is going on,& you’re struggling to find answers or make sense of things? Want help interpreting test results, or deciding what tests to ask for? Want help navigating evidence, not be sold another protocol? Read so much that you are now overwhelmed & dont know where to start? Feel abandoned or dismissed by your healthcare provider, or been told there is nothing that can be done to help? In my own journey, I remember frantically trying to find answers & getting constantly dismissed by doctors. Looking back, I wish I had some guidance from someone... 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
May 31 • 8 tweets • 2 min read
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 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
Apr 23 • 5 tweets • 3 min read
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…
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…
Apr 20 • 13 tweets • 2 min read
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
Feb 24 • 20 tweets • 3 min read
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
Jan 29 • 9 tweets • 2 min read
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…

Infographic of symptoms that can occur post-vac (fatigue, cognitive dysfunction, weakness, tinnitus, pain, tachycardia, etc), diagnoses to consider with relevant tests: Cardio/respiratory: BP, ECG, MRI, echo, D-dimer, FBC, PFT, VQ/DECT. MCAS. Connective tissue disorders: imaging, beighton score. SFN, nerve conduction, QSART, QST, skin biopsy. Nutrition screen. Autoimmune: ANA, ANCA, PR3, MPO, CRP, ESR, APS, reactivated pathogens. ME (see NICE). Endocrine: thyroid, renin, aldosterone. Dysautonomia: NASA lean test, 24 h urine Na. Support patients by: Listening; showing empathy; curious; beli... 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
Jan 22 • 4 tweets • 1 min read
When i was employed by @NHSGrampian i wrote a generic letter to your doctor about key things to look for in #longcovid/#postvac:


The aim was to give drs some direction based on emerging evidence as the NHS has offered nothing helpful in terms of guidance dontbelievehype.co.uk/covid-%26-vacc…
I was told to remove any reference that i worked in the NHS which i had initially written in the letter.

The NHS didnt want any association with *checks notes* evidence. It was deemed "too risky".
Jan 12 • 4 tweets • 1 min read
Randomized Controlled Trial of Intravenous Immunoglobulin for Autoimmune #POTS


Clever study design: n = 30 POTS patients (27 completed) received either IVIG or albumin infusion. They did this to control for volume expansion

Results: No difference!researchsquare.com/article/rs-350… If we look a bit closer at the results, it does look like a subgroup of IVIG patients get distinctively better (> 20 % improvement), and other get a bit or significantly worse. graph showing symptom score change between IVIG (n = 15) and albumin (n = 12). IVIG shows a range of patients getting 40 % worse to 50 % better. 7 of these patients improved by 20 % or more, 5 hovered between 0-10 % worse, 1 was 40 % worse, and the rest were 0-20 % better. for albumin, 3 patients got 0-10 % worse, 2 got more than 20 % better, and the rest were 5-20 % better.
Jan 12 • 7 tweets • 2 min read
Fatigue and tiredness are different. Simple way to show this:

First generation antihistamines block histamine action in the brain. Histamines are a wakefulness molecule. Hence a side effect is drowsiness and tiredness.

But these drugs can also significantly relieve fatigue. If fatigue was a form of tiredness, this would be unlikely to happen, especially considering the other mechanisms of action with first gen antihistamines which are not conducive to wakefulness
Nov 29, 2023 • 4 tweets • 1 min read
Just had an appointment at the nutrition clinic with my best dr & it leads to an important lesson for #MedTwitter

Ive been on fludrocortisone for about a year or more now i think. Ive been supplementing with potassium...

#POTS #longcovid #postvac Today my potassium came back just above the threshold of needing to be admitted for IV. Surprisingly having a good week. I had no idea it was this low.

The BNF discusses regular electrolyte monitoring with fludro but the Heart Rhythm Soc POTS guidelines dont (iirc) mention this
Nov 13, 2023 • 9 tweets • 2 min read
If someone has cancer & dont respond to treatment, they still have cancer

If someone has MS & dont respond to treatment, they still have MS

If someone has hypertension & dont respond to treatment, they still have hypertension

Yet a common misconception i hear is:👇🏻
#LongCovid "i dont respond to #MCAS treatments, so i cant have MCAS"

The key difference is that the 3 illnesses i describe above have clear biomarkers. Most with MCAS wont get appropriate tests, & if they do, there are limitations in the tests such that negative results cant rule-out MCAS