Tom Plender
@TomPlender
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Musician, Artist, Chairman of FND Action
London, UK
Joined December 2021
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Pinned Tweet
#FND
left me housebound for many years, unable to walk or use my arms. The turning point came when I met Prof Mark Edwards & finally received diagnosis & treatment. It’s still a battle but I am starting to play again. I hope my story shows with the right treatment, there is hope.
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I drew this after being taken off huge dose of lorazepam, I’d been on it for 15 years, the withdrawal was awful- 2 year taper, then 18 months of protracted withdrawal symptoms. After coming off I was seeing everything afresh with a vivid intensity that came out in the drawing
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I’m going to be on
@SkyNews
tomorrow morning talking about my
#FND
functional neurological disorder journey, they will also be talking to my neurologist Prof Mark Edwards
@fndhopeuk
@fndaction
@fndlifewith
@fndconnect
@jonstoneneuro
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1/Something that is rarely discussed in the medical literature around
#FND
is the mental health impact on a patient of being repeatedly told they have repressed psychological trauma when in fact they don't.
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Here's my interview discussing my
#FND
journey with
@skynews
, also features
@FNDHopeUK
and my neurologist Prof Mark Edwards
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What you need to know about FND
1/FND is a problem to do with the way the brain and nervous system sends and receives signals
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Pfizer knew about anti depressant withdrawal and chose to bury it as it would harm sales. Thousands, including myself given the wrong advice and severely harmed by withdrawal, it nearly cost me my life. Yet have Pfizer been held to account? Is there any support for withdrawal?
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1/People often ask is
#FND
neurological or psychological? I would argue this is the wrong question. Areas of the brain that process movement, pain & emotion are so intertwined there really isn’t such a division.
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1/ FND is often described by researchers as an 'error of predictive processing' in the brain.
But what does this mean?
Lets break it down -
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1/ FND is a brain network disorder it is not Freudian conversion disorder. Emotional trauma is a risk factor for for developing FND, but so is physical trauma, 30-40% of patients have no psychological trauma.
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Here's the interview I did on the GB news morning show with Angela Rippon. I discuss my
#FND
journey and the current desperate situation for FND patients.
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Anti depressant withdrawal nearly cost me my life, this programme is long overdue. Of course we have the usual knee jerk responses from many psychiatrists 'irresponsible pill shaming' etc . I would argue it's equally irresponsible not to inform patients about the potential risks
The Antidepressant Story is on BBC One and BBC iPlayer now
If you are affected by any of the issues in tonight’s Panorama, you can find details of organisations that can help via the BBC Action Line
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We had a magical night last night at Neil Gaiman’s brilliant play ‘The Ocean At The End of The Lane’ Amazing sets and special effects, still reeling from a unique and truly mind blowing evening!
@neilhimself
@OceanOnStage
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I really think this is an amazing sculpture - Melancholy by Albert Gyorgy
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1/Medical gaslighting describes a behavior in which medical professional dismisses or downplays a patient’s physical symptoms or attributes them to something else, such as a psychological condition. Medical gaslighting is especially likely to happen to women and people of colour
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A breakthrough! After 18 months of intensive physio for FND I started being able to play piano again last year, and now just last week the guitar, for the first time in 5 years! Still can’t play drums, my main instrument, but fighting to get back to it!
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Sadly many FND patients still experience stigmatising and negative interactions with medical professionals. This
@FNDAction
campaign is aimed at informing doctors about the latest research into the condition so we can move things forward!
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#FND
is a v complex condition that seems to have many subtypes. MDT treatment- Physio/CBT/OT works for many, but not all! Effective but in many ways a blunt instrument. We need more research into new & more targeted treatments the Global FND community must unite & fight for this
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1/ Recent research into
#fnd
shows unusual connectivity between brain regions that control movement and emotion.
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Here's a new video I've done with
@FNDAction
explaining why
#FND
is a brain network disorder. Click on this link to watch the full video -
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I’ve received a lot of messages from patients telling me their doctors have told them FND is ‘just psychological’. Having read many scientific papers in prep for the recent
@FNDAction
campaign I think I’d say to these doctors ……. It’s a bit more complicated than that!
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18 months ago my physio started me playing piano for just one minute a day, I hadn't played for many years due to the disabling effects of
#FND
. Now up to 2 hours a day and it looks like there may be the chance of doing some gigs next year. There is hope!
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The daily work! Approx 18 months ago my physio started me on 1 min a day on piano after years of disability due to
#FND
. I'm now up to 2 hours and slowly climbing. Here are some clips from the last few months of trying to get it back.
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Medical Gaslighting, a major issue, 30-40% of what doctors see fits in to the 'MUS' bracket. Using the dismissive 'it's all psychological' excuse will continue to harm doctor/patient relations, a sensible debate and culture shift is needed on this issue.
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This was a painting I made when I was still in the National Hospital for Neurology back in 2016 - recovering from a massive
#FND
flare up. Had it framed recently, I think they did a pretty good job! 😁
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1/Some key points about
#FND
FND is not -
Freudian conversion disorder, this is a pseudoscientific diagnosis for which there has never been any definitive evidence. In addition to this recent evidence has come to light showing Freud falsified results
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Neuro physiotherapy for
#FND
is still not well understood by many patients & medical professionals
@GNielsen_Physio
is one of the pioneers in developing neuro physio treatments for FND . To learn more click here -
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If you are thinking about coming off anti depressants or have experienced withdrawal symptoms I would strongly recommend Dr Mark Horowitz's website
@markhoro
for accurate info on this issue. For me personally his work has been a lifesaver. Link here -
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I messaged this doctor and asked him to take down a tweet mocking FND patients, I said I would be happy to discuss FND with him, he blocked me. What is going on with the medical profession at the moment, I find the current level of aggression towards FND patients really shocking
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Another recent painting. Was thinking of calling this one ‘FND Patient’ as it pretty much sums up my feelings about FND. For more art, check out my website, link in bio.
#FNDPatient
#FND
#Art
#Artist
#AbstractArt
#Painting
#Cubism
#ModernArt
#AcrylicPainting
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I was asked to appear on BBC News Look North last night to discuss
#FND
along with FND patient Leanne Fraser here’s a link if you want to check out the full interview -
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From 2016 when I was readmitted to the National Hospital for Neurology with a severe flare up of my
#FND
. My OT got me painting again & it was key to my recovery. This one was an attempt to capture the chaos of confused signals & sensory feedback that is FND.
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3/ There is a running joke among FND patients that if you didn't have PTSD at the beginning, by the time you have been through the medical system, you probably will do.
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More misinformation about
#FND
, without neuro physio movement re training I would still be unable to walk or use my arms & I’d still be in be constant pain & spasm. The treatment I had gave me my life back- so please stop spouting this ill informed rubbish.
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Many FND patients experience outdated and stigmatising views from medical professionals. This campaign is a chance to change that through education. Go to the website to find out how you can get involved.
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1/The last few weeks of antidepressant withdrawal have been a living hell, 'Brain zaps'-electric shock like sensations in my head that have made it impossible to sleep. Bizarre mood swings/disorientation, dizziness of such severity last week I fell to the ground & injured myself
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2/Having your experience of a disabling and very serious neurological illness negated and invalidated year after year, and being told by medical professionals you have trauma when you don't, can over time actually end up being very traumatising.
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#FND
is a complex multi network brain disorder - simplistic and outdated Freudian theories are not fit for purpose in the 21st century
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Last weekend walking on Hastings beach we discovered this amazing submerged boat sculpture by artist Leigh Dyer. Having spent nearly a decade housebound with FND to now be recovering & able to go away & walk on the beach like this still feels really special.
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1/
#FND
doesn’t fit into our current medical model. The reason for this is the brain network disruption in FND affects so many different brain areas- (regions of the brain that process movement, emotion, pain etc), our ‘physical’ v ‘psychological’ medical model collapses
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1/ In recent years the rhetoric around
#FND
has shifted from 'FND is all psychological' to 'FND is a disorder with the way the brain sends and receives signals, and not to do with anything structural that can be seen on a scan, it is therefore a software not a hardware problem'
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I've collaborated with
@fndportal
to create an audio version of his excellent article 'A Cadenza for Fractured Consciousness' We know many of our fellow FND patients are battling with concentration and cognitive issues so hoping this will be helpful.
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1/The trauma model failed when it came to treating my
#FND
& ended up causing a lot of harm. It failed because trauma is a risk factor not the root cause, & there are many risk factors. My recovery came from treating FND as a problem with the way the brain controls movement.
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A recent painting, been getting over very bad flu which seemed to flare up my
#fnd
symptoms, painting has been a real help getting my nervous system calm down, therapeutic as always
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Another painting, this one’s from last year. Entitled ‘In Dreams’. Acrylic on canvas. For more art, check out my website, link in bio.
#Artist
#Art
#AbstractArt
#Painting
#Cubism
#ModernArt
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I was diagnosed with
#antidepressant
withdrawal syndrome several years ago. At times the symptoms have been so severe I considered ending my life. For years I was met with denial by medical professionals and I'm still unable to find any support from the
#NHS
. Is this acceptable?
"We believe that the NHS has a clinical & moral obligation to help those who've been harmed by taking their medication as prescribed...we urgently call upon the UK government to fund & implement withdrawal support services, including a national helpline".
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Having a break from London & FND campaigning as I’m feeling burnt out & still struggling with anti depressant withdrawal syndrome. Was walking through the woods this morning with a head full of worries about the future- then something unexpected & magical happened!
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1/
@FND
is now often described as a 'brain network disorder', but what does this mean?
Let's break it down-
Scientists used to think different bits of the brain were concerned with only one function, so for example they used to believe-
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#FND
is a multi network brain disorder. with underlying biology. It is not a mental illness or a ‘behaviour’. It is a real condition and can be devastating. For more information please go to the
@FNDAction
website
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2/We have been cultural indoctrinated into the idea that you can split illness into either physical or psychological. To understand FND you have to think multidimensional terms. The biopsychosocial model is the only framework broad enough to encapsulate the complexity of FND
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3/ So what this means is that areas of the brain that control motor movement, pain processing ,emotion and self agency are so intertwined that our cultural tendency to split illness into either ‘physical’ or ‘psychological’ is false, the brain doesn’t work like that
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'May' still carry stigma? It should be 'does' still carry stigma! As an FND campaigner I hear from patients every week- negative and stigmatising interactions with medical professionals are the norm- not the exception!
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As promised here’s an accessible/no paywall version of my interview discussing my
#fnd
Functional Neurological Disorder story in the ‘I Paper’ last week. Also features my Neurologist Prof Mark Edwards.
@FndPortal
@fndhopeuk
@AlanCarson15
@johnstone
@davidperez
@louiseweir1
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As someone whose experienced severe antidepressant withdrawal syndrome it's positive to see this finally being discussed. Patients must be informed of the pros/cons when taking these medications. .
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I've just been looking at this FND Hope stigma survey, 81.64% of FND patients felt they had been treated poorly due to stigma by medical professionals, this is not acceptable, we have to change this culture, we must end the stigma and abuse
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The Freudian psychoanalytic approach to FND can end up doing harm because it doesn’t address the fundamental underlying mechanism- errors of predictive processing. I’m in favour of bio/psycho/social model but conversion disorder with its stigma and lack of evidence needs to go
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On some days FND can make me feel a bit like this!
(another recent artwork, black ink, coloured pencil, watercolour)
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1/Given the recent abusive tweets going round by doctors who appear to be mocking patients with
#FND
functional seizures, I have some thoughts on what's going on here in terms of thinking about psychology and human behaviour
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From 2017 when I was readmitted to the National Hospital for Neurology. I was taken off SSRI’s to quickly resulting in’Anti Depressant Discontinuation Syndrome’ which then triggered a relapse of my FND. My OT got me painting again which helped me through that dark time
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85% of
#FND
patients experienced negative interactions with medical professionals, 64% felt label would negatively impact future medical care
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Predictably there are now some troll comments under the You Tube interview I did with sky news, can I encourage members of the
#FND
community to report these people to you tube, many thanks
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This is a text book example of how the emotive 'mental health stigma/pill shaming' argument is used to try and shut down a sensible debate about this issue. Patients deserve to be given information about the risks versus benefits of these drugs so they can make an informed choice
.
@BBCPanorama
seems to be the biggest driver of mental health stigma these days. First we had diagnosis shaming; now we get treatment shaming.
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#fnd
awareness day! The fantastic FND portal will be giving a talk entitled - ‘A future history of FND’
Who is this mysterious figure, fighting for justice for FND patients & striking fear into the hearts of Freudian’s everywhere? To find out listen in at 3pm this afternoon!
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1/As an
#FND
campaigner I'm regularly contacted by patients, I try to give them the best advice I can on treatment options and point them towards the latest research.
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There seem to be 2 ways the
#FND
diagnosis is used
1. To correctly diagnose a condition relating to brain network dysfunction and predictive errors in the brain
2. As a convenient catch all term for anything doctors don’t understand
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Article from
@SkyNews
where I discuss my
#FND
journey, also features
@cindy_smulders
from
@FNDHopeUK
and my neurologist Professor Mark Edwards
'Most common condition you've never heard of': Campaigners demand new plan for FND treatment
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Some afternoon blues! I’ve been playing consistently for a year now after many years of being disabled by FND
Thank you to all the medical professionals who research and take this condition seriously, without you I would not be playing today!
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This is the reality of living with
#FND
- there are many who say it's 'imaginary' or 'doesn't exist' - FND is real, it's debilitating and patients suffer greatly. Enough with the denial - we need compassion and more research to help patients with this condition!
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Good to be in Crete for a 2week break, had a great slightly drunken late night jam with Irini the hotel pianist. None of this would be possible without the groundbreaking treatment for
#FND
I received in 2012 with Prof Edwards and
@GNielsen_Physio
which gave me my life back.
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It’s been a long road back from FND-a decade housebound & no diagnosis -told ‘It’s all in your head’ . Then in 2012 I met Prof Edwards whose treatment began turning things around. In 2016 a massive flare up due to SSRI withdrawal. I kept fighting & now finally I’m playing again.
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6/ FND can be triggered by physical trauma and also psychological trauma, psych trauma is certainly a risk factor for developing FND but not the root cause, historically doctors have often confused risk factors with root cause.
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#FND
awareness day. At 7pm we have the Godfather himself- neurologist and leading FND expert Professor Jon Stone!!!! He’ll be giving a talk called ‘FND hiding in plain sight’ - you don’t want to miss this!
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2/FMRI brain scans have shown disruptions to several key brain areas, including the amygdala, insular cortex and temporo parietal junction, meaning FND is now viewed by leading researchers as a ‘brain network disorder’
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#FND
is real, debilitating and I personally know someone who died as the result of a functional seizure. The language and attitudes on display here are shameful. Doctors take an oath - 'first do no harm' openly mocking patients is not included in that.
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Recently collaborated with
@fndportal
to create an audio version of his brilliant article on
#FND
It covers the entire history of the condition and also discusses the latest neuroscience and treatment approaches. If you haven't heard it do check it out!
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I think this drawing sums up how I feel at the moment
#FND
plus
#antidepressant
withdrawal, not a good combo! 😖😖🤮
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One of a series of drawings made at the end of my 3 year withdrawal from Lorazepam back in 2015. My dads garden in Somerset near Glastonbury. Finally off the drug after many years the world suddenly seemed vividly alive and rich in detail.
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Been an amazing few weeks for
#FND
campaigning culminating in a brilliant FND awareness day. Big shout out to all involved & huge thanks to Kim our CEO at
@FNDAction
who works so tirelessly behind the scenes to make things happen & support patients, Kim you are a legend!👏👏👏
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4/ I experienced 12 years of this negation before finally meeting Professor Mark Edwards who diagnosed and treated my FND, and probably saved my life. For 12 years I was not only denied any medical support, but to make matters worse, was also told the illness was my fault.
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A lot of doctors hold outdated views about
#FND
.The
#InformTheDoctor
campaign is aimed at bringing doctors up to date with the latest research into FND. Check out this short video and find out how you can get involved and be part of the change!
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Dear FND community, I am currently making a short film about my
#FND
journey & I also want to include footage of patients with severe symptoms - such as walking issues and seizures. If you have any footage & would be interested then do get in touch , many thanks
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Here's the interview I did on the GB news morning show with Angela Rippon. I discuss my
#FND
Functional Neurological Disorder journey and the current desperate situation for FND patients.
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Here's one of my recent paintings titled
#Dryad
. Acrylic on canvas. For more art, check out my website. Link in bio.
#Artist
#Art
#AbstractArt
#Painting
#Cubism
#ModernArt
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1/I’ve had
#FND
for over two decades and in that time I’ve seen the field go through several shifts in ideology. When I first got a FND in the early 2000’s, most of what I heard from medical professionals was essentially Freudian.
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Another recent painting! For more art check out my website (link in bio)
@KirstyJ80
@FndPortal
@DevonOship
@FNDHopeUK
@punkchef41
@Elledalton011
@tonesqueFND
@alinewlandious
@Fionas_Story
@alex_fisher1969
@FNDAction
@ClaireM24173017
@livingmyfndlyf
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To mark World FND Month, FNDHope are asking patients to make a short 10 second video about what gives them hope
What gives you hope and keeps you moving forward?
Here is my own 10 seconds of hope.
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17/Unless there is a constructive and thoughtful approach to the common and difficult scenario of when a doctor is faced with an illness they don't understand, and an acknowledgement of past failings, we will see no progress, and sadly this harmful culture will continue.
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I seem to be quickly running out of wall space for my paintings! 🤣🤣🤣
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As an FND patient these have been two of the most important papers in terms of expanding my understanding of the recent findings in FMRI brain imaging , highly recommend!
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1/Depending on which studies you look at, so-called 'medically unexplained symptoms' account for approximately between 30 to 40% what doctors see.
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7/ Having spoken with many doctors over the last few years of being involved in FND campaigning, I now understand what I was up against was a culture, a culture of negatively stereotyping FND patients based on a lack of understanding of the condition,
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Gavin is a massive inspiration! He’s using a lot of the same principles relating to ‘automatic’ movement taught in
#fnd
rehab - to battle Parkinson’s!
@vertigologist
It’s important to acknowledge there’s a wide spectrum of freezing, bradykinesia, off-state, and other gait issues. Different people have different experiences and ability can be very fluid even among individuals. Movement is very complex involving much more than the physical.
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7/ like most illnesses the reasons why people get FND are complex and heterogenous.
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FND Portal - a hero to many!
You have lead the way so that others may follow, you’ve been a voice for the voiceless. Thank you for everything you have done and continue to do for the FND community!
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