If you have a trial for a heterogeneous condition like #MECFS, then looking at average effects is no longer a good option to determine effectiveness.

If half improve and half get worse, we determine the intervention ineffective.

#academict
Instead we should explore *why* those who responded did respond and vice versa.

For the non responders we should then move them on to another intervention

We also need to consider poly-interventions to address multiple pathologies
This is a whole different way of trialling drug efficacy than we do now.

Folk will rightly point out the flaws in this such as the bias it introduces but fail to understand the bias current trials introduce
We can never have a perfect trial.

Heterogeneous diseases cannot be studied in the same paradigm as homogeneous diseases

It is important to understand that X works in some but not others. This gives patients an option to try and guidelines to follow
We will never get answers for such diseases all the time we are hunting for a single biomarker and single treatment for all

Nothing is simple in these diseases, so myopic thinking wont be the answer
(To be clear: folks studying a single pathway are still needed. We need highly specialised experts. But we also need experts who can put all those bits together to create a bigger picture and provide individualised research and care)
Me and @Naomi_D_Harvey have been raging about this today 🤣

Also dunno what is up with twitter hashtag recently, should be #academictwitter in tweet 1

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More from @angryhacademic

Jun 5
Folks who support the @GoodLawProject GMC case want to reduce vaccine hesitancy.

Policing what they deem misinformation and making the @gmcuk arbiters of truth will not achieve that
What will reduce vaccine hesitancy?

One thing would be to acknowledge, support, and be curious about #vaccineinjuries

I think it would do more to reduce vaccine hesitancy if the money raised went to supporting the vaccine injured.

Why?
Because no one should suffer more than acute and tolerable side effects from a vaccine.

Doctors have repeatedly dismissed and gaslit vaccine injured patients. For many reasons, but also because they dont want to "sound antivax"
Read 9 tweets
Jun 1
the autonomic nervous system has a branch that does not use acetylcholine or noradrenaline as transmitters. instead it uses other things, like nitric oxide, ATP, serotonin, neuropeptide-Y, etc
link.springer.com/content/pdf/10…

some thoughts RE #MECFS #LongCovid #teamclots #dysautonomia 🧵
Nitric oxide gets released (depleted?) in ischaemia reperfusion injuries
jnnp.bmj.com/content/67/1/1

Dysmetabolism is commonly reported in #MECFS
ncbi.nlm.nih.gov/pmc/articles/P…

(Circulating) Serotonin may get depleted with platelet activation
portlandpress.com/biochemj/artic…
Appetite gets dysregulated in #LongCovid and ME, often (not always) causing lower appetite. ME may be associated with higher neuropeptide Y
pubmed.ncbi.nlm.nih.gov/21190576/
Read 5 tweets
Jun 1
I had an appointment with my best dr the other day and he had a student dr with him.

Whilst the appointment wasnt about my clotting, he asked me to explain how atypically i present with pulmonary emboli and how treatment affects me beyond breathlessness

#medtw
Some notes:
1. My dr knew id be ok with this and im beyond happy he did it

2. My diagnosis is pulmonary emboli but i present exactly how youd expect with #postvac #longcovid with anticoagulants stopping me relapsing
The point was that no one expected me to have pulmonary emboli. I had worsening breathlessness + positive d dimer, but didnt reliably desaturate, no pulmonary hypertension, no DVT signs, etc. Took 14 months to diagnose
Read 5 tweets
May 31
OHHHH the irony. Not even a week since our paper on persuasive communication devices gets published and a paper has cited a paper of mine using device 4:

#AcademicTwitter 4. Misleading use of refere...
Paper:
ncbi.nlm.nih.gov/pmc/articles/P…
"Osteopontin plays a critical role in the formation of stones & is the leading organic component of urinary calcium kidney stones"

Citation:
pubmed.ncbi.nlm.nih.gov/31676259/ (study about hydration & appetite - we didnt even mention kidneys or osteopontin)
another one
Paper:
sciencedirect.com/science/articl…
"The generation of fresh water can be accomplished in various ways, including fog harvesting, multi-stage flash distillation, reverse osmosis seawater desalination,& so on"
Citation: sciencedirect.com/science/articl… (water intake & diabetes risk)
Read 4 tweets
May 31
Latest #SIRENStudy paper:
Effectiveness of BNT162b2 mRNA vaccine third doses and previous infection in protecting against SARS-CoV-2 infections during the Delta and Omicron variant waves; the UK SIREN cohort study September 2021 to February 2022
medrxiv.org/content/10.110…
During Delta period:
278 primary infections (4/10,000 person-days follow-up)
85 reinfections (0.8/10,000)

During Omicron period:
2,467 primary infections (43/10,000)
881 reinfections (33/10,000)
Relative vaccine effectiveness 0-2 months post-3rd (Pfizer) vaccine in SARS2 naïve cohort during Delta: 63 (95 % CI 40, 77) %

During Omicron:
35 (95 % CI 21, 47) %
Read 6 tweets
May 30
Thanks to a very kind collaborator, i have some copeptin (marker of AVP) data, compared to my pre-vaccine measures👇🏻👇🏻👇🏻

Whilst not all samples were taken in ideal conditions, it is clear something funky is (or was) going on with my AVP. some thoughts🧵
#postvac #LongCovid #POTS Graph showing serum copepti...
First a bit of background about copeptin (AVP)

AVP is part of the HPA ("stress") axis. briefly, high AVP = high ACTH = high cortisol

AVP also regulates hydration: low fluid/high salt = high AVP = kidney reabsorption of water = pee less = stay hydrated
1. What i find MOST interesting is that under the most controlled conditions (9am, no fluid), my copeptin was much lower than pre-vaccine on the same day my cortisol came back much lower than pre-vaccine
Read 31 tweets

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