Dr K Fearnley Profile picture
May 24 22 tweets 11 min read
🚨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/
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
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
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 ImageImageImage
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
#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
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
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
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
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
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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More from @fearnley_k

May 25
1/ An important thread on Long Covid and #viralpersistence

“Almost all infectious outbreaks leave behind a proportion of pts who remain chronically unwell with symptom patterns similar to #LongCovid. This is known as the ‘long tail’ of epidemics.”


2/ Clues can be gained from studying survivors of the SARS (SARS CoV-1) outbreaks of the early 2000’s, and the West Africa Ebola crisis of the past decade.
3/ After SARS CoV-1 in 2002 - 2004, some survivors were reported to feel “weak, extremely fatigued, had aches and pains all over their body, and they were completely unable to work”

Some also reported ‘sleeping extremely poorly’.
Read 25 tweets
May 24
I’d love to say I find this amusing. But in truth, I’m heartbroken.

I am heartbroken because I watched peoples loved ones die while they partied.

🧵 1/7
I am heartbroken because healthcare workers - including myself - risked their own lives to care for those Covid positive while they partied.

I am heartbroken because the conservatives made “extensive use” of emergency procurement contracts and misused £9BN pounds of taxpayers money to pay their mates for unsafe and unusable PPE, leaving healthcare workers exposed to a deadly virus.

Read 7 tweets
May 23
I think we need to stop referring to these people as ‘experts’. Our immune systems are exhausted fighting against repeated infection with SARS CoV-2 and, in the case of long covid, chronic infection. @WHO @bbchealth 🧵1/3
From a medical perspective, nothing about this is the least bit puzzling.

What is concerning, is the moral compass of those in charge; leading politicians, scientists, medical professionals, who all play their part to deny #COVIDisAirborne & infection harms. #CovidIsntOver 2/3
I have two questions:

(I) When are we going to invest in #CleanAir? Air filtration systems must start to be installed in public buildings, starting with schools & hospitals.

(II) When are we going to stop breaking HSA legislation & equip patient facing NHS staff with RPE? 3/3
Read 4 tweets
May 22
This patient was ‘fortunate’ her d-dimer was raised.

Attention medics: why a normal d-dimer and CT imaging do *not* exclude the presence of micro clots 🧵 #MedTwitter #MedEd
A raised d-dimer is often indicative of clots. If raised, CT PA imaging is requested to further investigate for the presence of clots.
Despite micro-clots being present in blood of Long haulers our d-dimer is often normal. D-dimer is a break down product of clots & our micro-clots are not being broken down.

In the presence of a normal d-dimer, imaging isn’t requested.
Read 6 tweets
May 2
This is not how a healthservice should run.

Threat of contracting Covid will deter vulnerable patients from seeking medical care. Those who decide to take this risk, face risk of death or permanent disability.

How is this in any way legally or morally acceptable? @sajidjavid
Patients deserve to be treated & cared for in a safe environment.

NHS staff deserve to go to work without fear of dying or becoming permanently disabled.

Hospitals MUST start to install air filtration systems #hepa. It’s time to make the air safe & invest in #cleanair
Read 4 tweets
May 1
Dear companies, who are encouraging staff to work when they are symptomatic or have tested positive for Covid-19, how do you intend to protect customers, especially those clinically extremely vulnerable? @sainsburys @Tesco @BootsUK 🧵

As someone who has nearly lost their life to Covid, sustained multiple organ damage, and has now been significantly unwell Long Covid for 15 mths and illness ongoing, I would pls like an answer to this question.

And for any ableist’s reading this, who believe CEV ppl need to protect themselves and dodge society, prior to Covid, I had no underlying health conditions and was a fit and healthy 35yr old.

Being fit & healthy does not make you immune from adverse outcome.

Read 7 tweets

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