🚨Attention medics.🚨 An important thread on #MyalgicEncephalomyelitis Forget what you think you know. It is not psychosomatic. These pts are desperately physically unwell, likely with a chronic infection. #MedTwitter #MedEd #TeamGP 🧵 1/
https://twitter.com/dafoewhitney/status/1528878798686412800
Bedbound & housebound, they make up #millionsmissing. They maybe out of sight, but they are never far from my mind.
Neglect of #ME is the biggest medical scandal of the 21st century. The medical community will soon look back on their treatment of #pwME with horror & shame./2
Neglect of #ME is the biggest medical scandal of the 21st century. The medical community will soon look back on their treatment of #pwME with horror & shame./2
But some Drs maybe forgiven for their ignorance. #ME fails to feature on the UK medical curriculum and as such, awareness & understanding is low.
The condition has also been highly stigmatised & erroneously - but deliberately - labelled psychological./3
The condition has also been highly stigmatised & erroneously - but deliberately - labelled psychological./3
It is a condition which has been deliberately psychologised by clinicians with links to insurance companies and as such, has gone chronically underfunded & neglected by the medical profession for decades. This myth has done untold harm & must stop, today. /4 
Routine tests often return normal. This unfortunate situation has aided psychologisers to perpetuate their myth.
But know this: pathology is evident when the correct investigations are performed./5
But know this: pathology is evident when the correct investigations are performed./5
https://twitter.com/fearnley_k/status/1490384048375672832
#pwME are not ‘fatigued’; their tissues are oxygen starved and they have impaired energy metabolism./6
It is by no accident terms like ‘fatigue’ and ‘Post Exertional Malaise’ (PEM) are used to describe symptoms of the condition. These terms were deliberately coined by psychologisers to normalise serious pathology./7
Post Exertional Malaise (PEM) (I prefer the term Post Exertional Symptom Exacerbation PESE), describes a worsening of symptoms after exertion.
Exertion can be cognitive or physical, and worsening of symptoms is often delayed./8
Exertion can be cognitive or physical, and worsening of symptoms is often delayed./8
You maybe forgiven for thinking: (I) Surely anyone is ‘fatigued’ after exertion - this is normal?
Except ‘exertion’ is not working a 14hr shift or running a marathon, it can be as little as brushing one’s teeth or hair./9
Except ‘exertion’ is not working a 14hr shift or running a marathon, it can be as little as brushing one’s teeth or hair./9
And (II) how does exertion cause symptoms to worsen? It doesn’t medically make sense./10
It doesn’t - at least, not to me at this point in time. Maybe if the condition hadn’t been neglected for decades we would have more answers, but nonetheless, that is what happens: exertion worsens symptoms./11
When one exerts themselves they don’t just feel ‘fatigued’, they experience autonomic nervous system dysfunction. Maybe if terms like ‘autonomic nervous system dysfunction’ were used symptoms of #ME would be taken seriously./12
To aid your understanding of PEM/PESE, here is a short video of my HR & O2 SATs the day after attempting a short (100m), snail paced walk:/13
Stood still I have a RHR 115bpm, SATS 96%.
On walking up 12 steps, HR increases to 140bpm, SATs drop to 92%.
For reference, prior to falling unwell, I had a rHR 60bpm, SATS 99%. No underlying medical conditions. /14
On walking up 12 steps, HR increases to 140bpm, SATs drop to 92%.
For reference, prior to falling unwell, I had a rHR 60bpm, SATS 99%. No underlying medical conditions. /14
Many #pwME have been permanently harmed by #GET (graded exercise therapy).
Can you imagine if this was your HR & SATS on standing & walking up 12 steps, you would want to push your body further?
I didn’t think so. /15
Can you imagine if this was your HR & SATS on standing & walking up 12 steps, you would want to push your body further?
I didn’t think so. /15
The poorly conducted, widely discredited #PACE trial conducted by psychologisers of #ME recommended GET & CBT- this has harmed & disabled countless sufferers by its inclusion in ME guidelines. Thankfully @NICE no longer recommend this harmful therapy. /16 healthrising.org/blog/2019/04/1…
It is essential #pwME operate within their energy envelope. If they exceed this (as I did attempting a slow 100m walk) they experience PEM/PESE (or as I prefer, autonomic NS dysfunction), risk their baseline shrinking further, & risk permanent disability & even death. /17
Patients with #ME have different sized energy envelopes depending on the severity of their condition.
With careful resting and pacing, some patients with less severe forms of #ME are able to work, while those with #severeME are bedbound, intolerant of light & sound. /18
With careful resting and pacing, some patients with less severe forms of #ME are able to work, while those with #severeME are bedbound, intolerant of light & sound. /18
Metabolic energy is so low for patients with #severeME that they only have enough for functions essential to life - breathing. And sometimes this is not enough. /19
I strongly suspect - as I suspect the case to be for patients with Long Covid - processes of autoimmunity and abnormal coagulation are downstream processes of pathogen persistence. /20
#pwME have suffered enough. Some have been housebound/bedbound decades. Well I see you. Medics, it is time it open your eyes to the #millionsmissing. The millions living their lives housebound and bedbound that until now, you have failed to see./21
@NIHRresearch @NIH @sajidjavid Time to aggressively fund research into #ME and commence drug trials to rid the body of persistent pathogens./22 #ChronicLyme #ChronicCovid #chronicEBV #viralpersistence @microbeminded2 #BigPharma
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