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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
Cat Parker Photography Profile picture 2 subscribed
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
Nov 8, 2023 • 6 tweets • 1 min read
Had cognitive tests, follow up with full results next weds. He was quite aware that id probably be above average on lots of things and its relative to my baseline but even without analysing the results he picked up on two things:

#postvac #longcovid 1. My short term memory and short term processing is impaired. I could remember things just as well once id learnt them versus then coming back to them but learning took an unexpectedly long time
Oct 27, 2023 • 7 tweets • 4 min read
I've been in business a few months now and have started to collect feedback and testimonials 👇🏻

I'm really overwhelmed with the positive responses so far 🥹


#longcovid #postvac #mecfs #mcas #PoTSAwarenessDay #POTS #chronicillness lc-sc.co.uk



5 star testimonial reading: Harriet knows her stuff! She does not go outside her appropriate lane. She was really thorough and made some suggestions that have really helped.... Not a minute of this consultation was wasted! So grateful for your knowledge and time ~AJM
5 star testimonial reading: Game Changer! When we were lost and being told we were imagining my daughters symptoms, Harriet spoke to us like sensible people and understood immediately the issues we were struggling with. Her advice both on the call and afterwards in report were extremely informative, accessible and relevant, and the detail meant we could bring her recommendations to healthcare professionals with confidence, successfully accessing treatments that had previously been denied to us ~ Rosie Maguire
5 star testimonial reading: I’m really happy to have found Harriet and her service. Having been suffering for over a year and met with the usual blank from the NHS, I was getting most of my advice and info from Twitter. Even as a scientist myself, I was finding it difficult to sort the better evidenced treatments from the more wild experimental suggestions, and felt quite overwhelmed trying to figure out how or where to start....Harriet has a wealth of knowledge and patiently talked me through everything I needed to know with excellent clarity. I am feeling optimistic about finding ways ... If you've had an appointment with me and would like to give feedback, you should have an email with links to (i) an anonymous feedback form & (ii) a testimonials form, which should take a few minutes to complete (depending on how much you write)
Oct 6, 2023 • 8 tweets • 2 min read
I had an appointment with a very well known #POTS specialist today. It was very odd and didnt go as i anticipated.

1. He was very empathetic and didnt disbelieve me which is nice 🙏🏻

2. He focused on rehab and exercise. I explained about #MECFS and... He "reassured" me its safe—theyve made the exercises with ME in mind and they are easy and can be done lying down. 🤦🏻‍♀️

3. I said i think its better to address pathology and then focus on rehab once we know what is POTS and what is ME. He said he respectfully disagrees 🤷🏻‍♀️
Oct 2, 2023 • 6 tweets • 3 min read
ok im about to go to bed but i just learnt possibly THE best thing EVER so had to share...🧵

1. Go to Google

2. Type into Google: cat

You'll get 👇🏻

You may at this point be thinking "I know you love cats, Harriet, but this ain't anything to get excited about"

STICK WITH ME a google search for "cat", showing some cute cats and various websites etc 3. Look how cute the cats are 😻 (very important step, do not skip)

4. Make sure your sound is on

5. Click the orange circle with a paw in it, next to the word "cat" 👇🏻 the same google search for "cat" as the first tweet, but with "click here" written in red writing with paws in the font, and an arrow pointing to an orange paw on the google results page, near the top left.
Sep 24, 2023 • 4 tweets • 2 min read
Glad to see vaccine supporters raise awareness of the inadequacies of vaccine compensation schemes

We wont reduce vaccine hesitancy if those who are injured get abandoned My (UK) experience here 👇🏻


UK petition for change here:

In the UK, even some VITT cases have been rejected for not being causally related to the vaccine. Y'no, VITT, the condition unique to covid viral vector vaccines 🤷🏻‍♀️
petition.parliament.uk/petitions/6379…
Sep 12, 2023 • 4 tweets • 1 min read
Ive just learnt about post thrombotic syndrome (PTS).

Heres an idea:

Covid/vaccine --> clots --> damaged valves --> venous disease (e.g. iliac vein compression)

#longcovid #postvac #teamclots Add inflammation ± predisposition to connective tissue weakening, could a sort of PTS (not necessarily from classic DVT, and more on a micro scale) be the link between covid/spike and iliac vein compression etc that folks like @jfvaughnmd09 are seeing? 🤔
Sep 10, 2023 • 9 tweets • 3 min read
Checked my post and to my surprise ive been offered flu and COVID vaccines

To my knowledge, i dont meet any of the criteria - have they realised COVID is a thrombotic vasculitis??

Even ignoring my vaccine injury, vaccines are contraindicated when taking fludrocortisone
A letter inviting me for a flu and covid vaccine
Inside an accompanying pamphlet reading: who is being offered the vaccines? • residents and staff in care homes for older adults • people aged 65 and over • people aged 12 and over with a condition that places them at higher risk (including pregnancy) • carers age 16 and over • people aged 12 and over who are household contacts of people with a weakened immune system • frontline health and social care workers Very frustrating to see side effects being reduced to acute side effects and "very rare" and "quick to recover from" myopericarditis. This is upsetting for 2 reasons:
1. They emphasise men (which is what the data show) but women i know with myoperi were dismissed Pages describing acute side effects such as a sore arm and fever, plus a heading "very rare side effects" stating myopericarditis, mostly in younger men and language which infers its mild