Dr K Fearnley Profile picture
Jun 4 26 tweets 10 min read
1/ According to latest ONS figures, 2M people in the UK now have Long Covid. Between 50-70% meet diagnostic criteria for #MyalgicEncephalomyelitis, a serious condition notoriously neglected & misunderstood by medical professionals.

Medics, read on for important information 🧵
2/ Thank you @AnilvanderZee for making this video. I want medics watching to understand that although Anil looks in good health, I can assure he is not. The exertion used to make this video will have triggered a ‘crash’
3/ I have experienced this for myself. Prior to covid I was a fit and healthy 35yr old, no comorbidities, regularly working 12hr+ shifts all day on my feet.
4/ I am now 18th mths housebound with Long Covid. Amongst many other symptoms, I exerperince #postexertionalmalaise (a diagnostic hallmark of #MyalgicEncephalomyelitis)
5/ Like many of you reading this, I had not heard of #MyalgicEncephalomyelitis or #postexertionalmalaise. You’re ignorance may be forgiven given that it fails to feature on the UK medical curriculum. There is, however, an insidious reason behind this.
6/ #MyalgicEncephalomyelitis is a serious, life-limiting - and in some cases - life-threatening condition, which has been deliberately stigmatised & psychologised by clinicians with links to insurance companies
7/ Owing to this inappropriate psychologisation, research into #MyalgicEncephalomyelitis has gone chronically underfunded for decades and patients are often victims of medical gaslighting.
8/ Please remember: absence of evidence is not evidence of absence. Investigations are not always sensitive or specific enough to pick up pathology. But please know, pathology IS evident when the correct investigations are performed.
9/ It is unfortunate that in the case of #MyalgicEncephalomyelitis basic tests often return normal. This often erroneously reassures busy clinicians that there is nothing seriously physiologically wrong with the patient. Nothing could be further from the truth.
10/ My experience of PEM: Recently, I attempted a very slow, snail paced 100m walk. At the time of walking I didn’t feel too bad, but I knew not to push my body. the effects of #PEM are often delayed.
11/ The negative effects of my slow, snail paced walk were felt that night. The walk threw my body into autonomic dysfunction. Laying in bed I had a resting heart rate of 120bpm.
12/ The next day, I had a higher than normal resting heart rate (90bpm) which would increasing further just on standing (120bpm) and increase again on minimal exertion (160bpm walking up a day flight of stairs). If you want to see my dysautomnia in action:
13/ It is essential #pwME operate within their energy envelope. If they exceed this (as I did attempting a slow 100m) they experience PEM, risk their baseline shrinking further, & risk permanent disability & even death.
14/ PEM and a worsening of symptoms can follow any type of exertion. Exertion may be cognitive, emotional or physical.
15/ There are different severities of #MyalgicEncephalomyelitis. With careful resting on pacing, some pts are able to work part time. While others with severe forms of #MyalgicEncephalomyelitis spend their lives housebound/bed bed bound, intolerant of light or sound.
16/ We are not ‘fatigued’. This word is bullshit. It doesn’t come close to describing how we feel.
17/ Know this: On a cellular level the body is not metabolising energy properly. This is likely secondary due to tissue hypoxia. You feel a Lactic acid build up in the limbs.
18/ I have felt this Latic acid build up after doing as little as lifting a tooth brush. It is a sign of anaerobic respiration. Our tissues are hypoxic. They are not receiving enough oxygen.
19/ All long Haulers who have had their blood tested have been positive for microclots. We know COVID is causing a prothrombic vasculitis. Micro clots are trapping inflammatory/immunogenic material.
20/ There is a growing body of evidence of viral persistence within the medical literature. I strongly suspect processes of autoimmunity and microclot formation are downstream processes of viral persistence. 👇🏼
21/ I suspect similar is happening in those with #MyalgicEncephalomyelitis. Ultimately we need to clear pathogen persistence from our bodies. @NIH @NIHRresearch @NIHDirector #millionsmissing
22/ I ask you take #MyalgicEncephalomyelitis seriously. Despite appearing ‘well’ these patients are suffering beyond anything you can ever imagine.

Edit: To add for clarity, @AnilvanderZee clearly has severe #MyalgicEncephalomyelitis. His tipping point isn’t a 100m walk like me; it’s as little as holding a conversation.
Once you cross your baseline, the body crashes. The minimal energy you have is diverted to functions essential to life: breathing, digestion. There is no allowance for luxuries like processing light and sound.
If you push yourself, your baseline can permanently drop. The more you push against the bars, the smaller your world becomes. This is the cruelest thing you could ever imagine. Now imagine no one coming to help and a doctor telling you it’s all in your head.
The medical profession is now starting to look back on it’s treatment of those with #MyalgicEncephalomyelitis with shame and horror. Now is the time for change. Time to invest in research @sajidjavid @NIH @NIHRresearch @NIHDirector & clear the body of #pathogenpersistence

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More from @fearnley_k

Jun 5
🚨 Can anyone who lives local to Southcote Road, BOSCOMBE, Bournemouth, check on the welfare of these dogs? Update below. @rickygervais @PeterEgan6 @domdyer70
This morning I have contacted Dorset Police and the RSPCA.
@dorsetpolice confirmed the incident had been reported to them, but because I am not the dog owner or the car owner, they said they cannot give me any details of the case.
Read 9 tweets
Jun 5
New preprint:

Long COVID is associated with extensive in-vivo neuroinflammation on [18F]DPA-714 PET

A significant number of COVID-19 patients develop ‘long COVID’, a condition defined by long-lasting debilitating, often neurological, symptoms.
Post-mortem histopathological studies have shown extensive inflammatory responses in organs of patients with acute COVID-19, including the brain. Postmortem studies reveal diffuse microglia activation predominantly in the olfactory bulbs, medulla oblongata, brainstem & cerebellum
Read 23 tweets
Jun 3
1/ I tweeted earlier that wearing a mask is a sign of intelligence. This gentleman is not so sure. I thought others may feel the same, so let me tell you why I think this. This is esp pertinent to those who’ve had a mild-short lived illness & think #SARSCoV2 is nothing to fear.🧵
2/ Reason 1: Public health messaging fails to warn on the dangers of #LongCovid which can follow on from an asymptomatic or mild infection. Long covid steals your health, life and independence, and is currently absent of treatment or cure. This is what Long covid can look like:
3/ Just because you’ve had a mild-short lived infection the 1st, 2nd or 3rd time - do not count your chickens.

Do not assume the next time will be the same. Every time you get infected you roll the dice.
Read 12 tweets
Jun 2
1/ Captain Daniel Chertow (MD, MPH Head, Emerging pathogens Sections, Clinical Centre, NIAID, NIH) presents results from a series of 44 autopsies showing evidence of SARS CoV-2 infection and persistence through the human body and brain.
2/ All autopsies were performed & samples collected within 24 hours of death.

“SARS CoV-2 can replicate within tissue for over 3 months after infection in some individuals, with RNA failing to clear from multiple compartments for up to 230 days.”
3/ He says they found indirect evidence of replication competent virus in the brain.
Read 5 tweets
Jun 2
1/ Important thread.

Why UK government failure to acknowledge & invest in #LongCovid will have irreparable health & economic consequences. 🧵

@Conservatives @UKLabour @LibDems @LSHTM @markjit @AnnaVassall
2/ In April 2021, #LongCovidKids hand delivered letters to Prime Minister, @BorisJohnson, requesting investment & treatment for #LongCovid.
Read 23 tweets

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