I am sure I’m not the first Dr who has stumbled upon the scandal of MECFS - due to developing it themselves. I’m sure I’m not the first to learn from others in the community about the history of the condition. In sure I’m not the first to use their limited energy to hunt 1/
One thing I wish people who don’t have
#LC
or
#MECFS
would understand is that SO MUCH
#TIME
is lost due to
#PEM
that when you feel OK , it’s hard to work out which of the many things on your “ to do” list to tackle first. Never mind the more enjoyable ‘want to do’ list .
@FlorenceOfLabia
colleague from the past who was horrified and couldnt understand why i wasn't there banging on the door being more demanding. Easy to say when you're not the one being gaslit..
@FlorenceOfLabia
So sorry. I was dismissed for months last year wrt things that, being a Dr myself, i knew were 'red flags'. Its a terrible feeling. And the more you question the more you look like a neurotic, or 'hysterical' woman. In the end i just tried to push it aside. Until I talked to a
@HackedOffHugh
It actually makes me feel sick. Why are there not more people looking at this,thinking. “Why are the people leading our country actively trying to make our lives worse, whilst theirs better ? And shouldn’t we maybe stop voting them in ?”
Starting to get hate because I retweeted something saying that we need to support the Vaccine Injured. Note - I am NOT “ anti-vax” in any way. I simply think that we can’t deny people care if they turn up with a syndrome that looks identical to long covid if they didn’t test
What is
#PEM
like ? Yesterday evening I contemplated sleeping in a chair outside because I was too embarrassed to admit to my parents that I didn’t know if would be able to physically get to my bed. Managed to do it in stages. I couldn’t even lift a book to read.
#LongCovid
When i see " decision to leave" is trending all I can think of is F**K the architects of Brexit, those who manipulated so many others to vote for something that would undoubtedly make their lives worse
Any other
#longhaulers
out there who really just cannot handle competing noises ? I’ve always been a bit like this, know it’s a
#ND
thing, but now when someone tries to talk to me when the tv is on , I cannot handle it - unbearable. Anyone else ??
The only roasting of Liz Truss’s bull**** defence of Boris Johnson you need to watch
This is another graphic illustration of why the whole rotten lot need to go
@BladeoftheS
People in the UK have NO CLUE what it’s like without public healthcare. They should speak to those in the USA. 44% cannot access ANY care.
“As a Dr,if you need a biomarker or a screening test to show abnormalities after 2hrs listening to a patient about their symptoms,then you are clearly in the wrong job,"
Prof Carson compares those who suggest
#LC
is "all in the head" to flat earthers 🎯👏🏻
Another positive medical experience. The best yet. She listened , took me seriously, didn’t appear to dismiss
#LongCovid
examined me, appeared shocked thar no one has scanned my brain yet - ordered a MRI… I felt able to “ admit” that I’m also a Dr ( had stopped that..) PHEW❤️
@alexandrite113
Oh my God .. this is just horrid? Your response sounds reasonable to me ?
You haven’t done anything wrong. Better off without this person anyway - although must hurt if you considered them a friend. 🫂
@S_wei
Argh this has forever done my head in - I’m sorry . This is also common with elderly patients. I’d keep pulling med students aside and reminding them that these are your elders not babies / don’t do that
I need to start a group called “Psychiatrists against
#FND
”.
Just because medicine doesn’t have “all the answers”doesn’t mean unexplained symptoms are psychosomatic.
#Longcovid
is certainly not “functional”.Have you seen my
#fluoroscopy
results? I’ll pin them to my profile.
Here's a form of fraud and attack on patients that many psychiatrists, neurologists and cognitive neuroscientist choose to perpetuate.
If you work in this functional bubble and think this is science then you are part of the problem!
#LongCovid
@AmandaB55744931
How awful 😞.
Happened to a friend of mine in Heathrow airport when she arrived in from Spain. Around a year ago. Haven’t experienced it (yet) myself. Have had people mock me a little but nothing like this. Hope you’re ok and glad you reported xx
Massive hug out to anyone else who is still suffering with this affliction from early 2020:( it’s been too long. We don’t deserve this. And I am so unbelievably fed up of people not believing me. Trust me, my Friday nights used to be fun. I am not faking this.I want my life back.
@MrkStdngr
And the worst bit is that you get so frustrated with it all that you appear a bit crazy and then this acts as confirmation bias for them . It’s exactly like what happens in gaslighting in an abusive relationship
@prima__facie
@AllyKeyLime
Great points…
If only we had governments that would say “why don’t we just look to the countries who handled this pandemic well, and copy them?”
Any advice from the
#MECFS
community about how to deal with the disappointment felt when you get ready in order to go out (not even “out-out” just out to support yer ma at an art exhibition..) When it came to it I just feel too fatigued. And now guilty and sad.
@MrkStdngr
This happened to me too - despite me being a Dr. Mine was more that I was a neurotic hypochondriac with nothing wrong …Not just them, it spreads … I’d say it’s involuntary gaslighting.
@Liz_ORiordan
My faith in the management side of the NHS has steadily deteriorated since 2010 on all fronts. Going to management meetings and seeing how tense they were - a “them V us” situation - opened my eyes. Following treatment of whistleblowing Drs like
@drcmday
who only tried to 1/
@FaithOxenbridge
Sadly most Drs don’t know much about long covid. There’s a massive gap in our training about MECFS too which doesn’t exactly help (given the overlap). The little we are taught is detrimental IMO.
I wouldn’t know any if this if I didn’t have long covid myself.
@1goodtern
Yes. Long Covid is a whole body problem. Including the brain.
That is very very different from something being “psychosomatic”. This isn’t a difficult concept.
I have also been appalled at the lack of basic understanding ( and curiosity ) from many of my own profession.
Waking up and checking on Michael Mosley again and no sign? It’s weird how someone who is essentially a stranger can weigh on your mind. Seems like such a nice person, hope he is found when the search resumes. Thoughts with his wife and kids:(
@PhysicianDoodle
If more funding was put into GP , or out of hours GP , then .. ER’s would be freed up. I know this is pointing out the obvious ..but strains in GP obviously then lead to inappropriate ER/ED/A&E attendances
@GeorgeMonbiot
Bravo 👏 and as someone who has developed this as part of Long Covid-THANK YOU.
It IS the biggest medical scandal of the 21st century (?perhaps ever ..)
One of the worst parts?
I didn’t know until it happened to me & I guarantee many of my ex-colleagues still don’t.
positive / or had any symptoms of Covid. And if there are many that correlate their symptoms to just following their vaccine - then we need to properly investigate this without fear that the anti - vaxxers will pounce on it and extrapolate it to mean something bizarre & then
Shouldn't have watched PMQs... why on earth does Sunak keep asking Starmer why HE is responsible for ..X/Y/Z....
Is Sunak so removed from reality that he has forgotten that it is HE that is the Prime Minister?
Spread this as misinformation .Like any other medicine this needs longitudinal follow up & an open mind .There is a risk that people will lose all respect for science and medicine without transparencyAnd that people will be dismissed / told that their symptoms are in their head.
@DrGrounds
With you too. I thought I’d be off for a short time. No cure …at the min…stay positive ( I know this is nearly impossible at times) but with so many people now experiencing what is what
#MECFS
patients have endured for years, there is much more research going on.
Woke up , decided to do some CBT on myself and - wow suddenly I’m 100% better. Phew , glad all that’s over - now to move on with life. First thirst first , some graded exercise …
down a copy of Dr Melvin Ramsay’s book, to finally get their hands on it and then be taken aback at the clear details of a neurological illness with clear evidence of an immune component - that some psychiatrists .. somehow/for some reason … decided was psychogenic in origin 2/
As a qualified
#MD
&
#Psychiatrist
. I’m pretty baffled as to how a virus which produces a vasculitis (aka inflammation of arteries/veins) all over the body (more in some than others);& that we know is able to replicate in the brain ..could be written off as ¨psychological”🤔🤷♀️
#HHV6
transcripts in postmortem biopsies in ME/CFS
“Our results show abundant viral miRNA in various regions of the human brain and associated neuronal tissues including the spinal cord that is only detected in
#MECFS
patients and not in controls.”
#PwLC
£37,000,000,000 of our money, wasted, as could have been predicted given that many of these companies had no experience in producing PPE. They were just mates with Tory MPs. Now prisoners get paid to recycle the evidence? Any space for Mone & Harding ?
“Paying prisoners money to destroy stuff we never needed but bought for billions from ministers’ friends feels like a Mafia TV series plot. In fact, it’s just everyday life in the UK under this government.”
@laurenancona
Do you think being a human barometer IS a sensory sensitivity? Im one too. Have ADHD dx , and as we know the two things overlap considerably, in fact I think they’re slightly different flavours of the same thing
Im sure im not the only Dr to wonder so few other Drs at the time questioned this ..
I’m sure I’m not the only one who looked at the dates of these reports … thinking .. “ this was all known??”
“Why wasn’t this covered in my training ?” And then to question whether there’s 3/
Another day in
#LongCovid
paradise. Another appointment today , do I go? Do I risk yet another experience of someone threatening me ? Of being belittled and ending up in a state of shock/ then tears ? I have never had any fear about seeing Drs as a patient prior to this hell.
Horrible feeling of guilt …because I was upset and tearful last night about this thing that has ruined my life.
This thing that wasn’t my fault.
It’s like on top of everything else-we have to pretend that we are ok so as not to upset others - fabulous isn’t it ?!!
#LongCovid
@darrengrimes_
Jo Brand was a psych nurse prior to being a comedian. Do you have any idea how hard that job is ? Thereafter she has provided us with a lot of much needed laughter. A pretty impressive contribution to society.
What’s yours ? Derogatory remarks about the appearance of others ?
@misshealing7
Im so sorry .
Message for your mum :
- many cardiologists don’t know much about this
- yes, even though the virus affected our blood vessels.
- heart itself can withstand a lot more than the tiny capillaries - where a lot of the damage is happening ( see my pinned tweet)
@jonathanstea
Agree . Tell that to all the people with long covid who can’t exercise . I miss it so much. Every day I think about running . Wonder what would happen if I tried . Then remember what happened when I did try ..
A Dr I went to was angry when I raised subject of
#nattokinase
. Advised me strongly not to take this. Worried about bleeding risk. AFAIK many
#japanese
people have this as part of their diet. So what happens in
#japan
? Presuming they don’t all bleed to death ever time they 1n
much chance that this could be accidental …”🐓up V conspiracy?”
I’m sure I’m not the only Dr who has ended up in PEM multiple times due to getting upset about all of this.
What a cruel condition- that the very nature of it means that (*like with many other conditions*) stress
@JolyonMaugham
@CojangoCrafts
Someone should actually make this into a TV "based on real life"
#crimedrama
. Inside - characters
doing time for minor offences/likely with untreated MH problems. Then switch scenes to Baroness Mone on her yacht. etc etc
#channel4
?
@lcwithme
There is so much wrong here I don’t know where to start.
Lots of people with long covid satisfy the criteria for MECFS.
I presume they want you to see a psychiatrist as they think this is psychosomatic … it most certainly isn’t ( I’m a psychiatrist!)
Managed to make it to the hospital for my biopsy despite getting a bloody flat tyre on the way. Thankfully happened near a mechanic’s garage , and thankfully my mum speaks Spanish well , and was able to explain the situation and the mechanic took me to hospital 😵💫
“Unless the Tories can convince middle-aged voters that
#Brexit
was a good idea, then it is an idea that will die on its feet as the electorate changes,” Curtice said. “There are very few voters under the age of 24 who think Brexit was a good idea.”
Still feel like people look at me like I’ve said “I believe the earth is flat” just because I had bad side effects from a cVld 💉.
I’m not an “anti-vaxxer”.
I do not wish to increase “vaccine hesitancy”.
We should be able to tell our experiences without judgement.
That’s all.
And of course we know that those with mild symptoms get long Covid - so the other massive question is whether this is in fact what happened to these people. All of this will take time to work out but I don’t think we should let the anti-vaxxers stop us from keeping an open mind.
Awake at 3am thinking how much life has changed in 2 years. I should be just getting home from a night out, or maybe on a Night Shift. Maybe I’d even be in a relationship. Little did I know that that pesky dry cough I developed in march 2020 would change life so so much
#LCsucks
Has anyone totalled up just how much UK public money the tories have now squandered / lost / etc etc etc ? If you include costs associated with borrowing etc ? And the £37billion supposedly for test and trace ? And Brexit ? And the rest ?
triggers relapses or flares. But unlike many of the others there’s not the same level of controversy and injustice… which cause stress - that then results in you being reduced in your ability to actually explain it to others because you’re in PEM again / flattened to the bed 5/
Needing to withdraw myself tonight before I start being sarcastic to all the people who say either “ I had covid and guess what - I’m fine !!” Or “ I had 3x mRNA vaccines and I’m fine !” Yes .WE KNOW. Some people are not fine.
struggling with horrid neurological symptoms and generally feeling like you have the flu.
PEM - or PESE - is the thing that stops you doing what needs to be done to try and help to fix this situation . And anyone who has it knows it’s not just and excuse. 6/
@johnredwood
Is this a joke? Do we need to remind you that all this has happened under tory rule ? The decisions not to pay staff enough are what has caused many of them to leave and then come back, sometimes to the same role more or less , via an agency. Morale has been steadily 1n
@1goodtern
Ive heard of some cases of acute psychosis. Zero doubt in my mind that this can have neuropsychiatric complications (in addition to all the trauma from being dismissed / gaslit which virtually all of us long haulers have experienced)
If you want to understand
#LongCovid
, follow us, the patients that have had this since 2020. Many of us were Drs and scientists before this took us out.
This is not still some sort of unknown land where “ no one really understands what is happening” /far from it.
Long Covid and having periods = a really bad combo. And other women finding that their periods are worse in all sorts of ways than pre- Covid ? Just had a succession if cramps so painful that I thought I may pass out. Sorry not sorry male followers..
Just been listening in on a long Covid chat thing with
@D_Bone
🔥🔥
Wow. The stories are uncannily similar to me.
We really need to SHARE our experiences. I’m promising to myself that I’ll start my blog tomorrow. I’ve procrastinated long enough.
It’s so important.
#LongCovid
A very good place to start if you can’t get a copy of this book & wonder what I am talking about -
@davidtuller1
’s blog.
I don’t have energy to write any more at present . 💪🏼💙
Just curious . When I tell people that several of my mates who were Drs have now left medicine ( voluntarily ) do people find this hard to believe ? It’s so completely normal for me now- but they’ve all got to this point whilst working in the
#NHS
under the
#tories
Yesterday I was stressed as late for an appointment , so I ran from my car / up the stairs if the building . Walked around town for a bit ,bought a few things. Felt ok. Today biggest
#PEM
crash I have had in months - it’s 6 pm and I’m still in bed. 28months
#longcovidsucks
Yesterday diagnosed with
#hypothyroidism
. Mixed feelings; relieved + + to know why my health has likely worsened (slept through Xmas more/less)happy re:thyroxine. BUT lump in thyroid growing & they now want to biopsy. My bet is more
#autoimmune
stuff. But 😬🤷♀️
#longhaulers
Cant sleep. Lying here thinking about what an old friend said to me via text.
"Have you tried any of the Long Covid Treatments?"
I am a Dr.
I am 9 days away from my 5th year of Long Covid.
#pwME
do any of you have any links to important research about
#ME
that you feel was largely swept under the carpet by
#medicine
? Trying to self educate from my
#longcovid
bed
She was also warm and engaging ( despite me being late) . It also makes me look back and think 🤔 actually no, I wasn’t asking for too much… and the fact I’m a Dr too shouldn’t be off putting, shouldn’t have to hide this
Waking up with
#LongCovid
.. before you try to move..“ What have you got in store for me today then ? Am I going to be as ridiculously fatigued as yesterday or are things going to start improving again ? Have I rested enough for you now ?”
@VPrasadMDMPH
Hi 👋🏼
There are many studies showing that those with LC deteriorate further with re-infection. LC more of an umbrella term and considerable variation in severity. People don’t want to accumulate more disability.
This study is well worth a read :-
Here is the latest from our team in
@NatureMedicine
Should you protect yourself from Covid-19 reinfection
Yes!
Reinfection is not benign; it is best to avoid it
by
@Bcbowe
@Biostayan
@zalaly
A thread 🧵
I can’t help but think this must be a major contributing factor as to why this hasn’t been challenged within medicine … those who realise / have it / and this is why they don’t speak out ( in many cases they can’t due to their symptoms ) .
Off to pace . 8/
Pleased to announce that I had a Dr’s appt that actually went well!☺️🍀In fact the last 2 have…Not sure WTF has changed …🤷🏼♀️it might simply be that as time progresses more
#Drs
are realising that
#LongCovid
is (sadly for us ) an
#organic
problem and not a “functional” illness
@nadinebh_
@LyndaMumshoes
I loved it the other day when she said “ the prime minister thinks ethics is a county east of London” or something v similar … 😂😂👏🏻👏🏻👏🏻💪🏼
@AngelaRayner