Thread by @fearnley_k

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 🧵

https://twitter.com/AnilvanderZee/status/1532913044375879680

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.

https://twitter.com/fearnley_k/status/1483130091634892801

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. 👇🏼

https://twitter.com/fearnley_k/status/1529409852912680960

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.

End.

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