Fightback Against FND

601 posts

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Fightback Against FND

Fightback Against FND

@FndFightback

FND Warrior 💪🇬🇧 Down, but not out! Bringing more awareness to the debilitating effects of Functional Neurological Disorder (FND) Coffees warmly welcomed 👇

London, UK 가입일 Mayıs 2022
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BBC Politics
BBC Politics@BBCPolitics·
"Disabled people should have been at the heart of the matter from the beginning" Comedian Roșie Jones says the government "never considered the real effect" that the proposed welfare reform would have for disabled people #BBCLauraK bbc.in/4lqTJud
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Stephanie-Roxanne Blanco
Stephanie-Roxanne Blanco@S_R_Blanco·
Today I submitted the PhD 😱 "Dissociation, Brain Function and Inflammation in FND". It's been a long 6 yrs! I'm so grateful for all of the support I've had through this🥹 Special shout out to the #FND community who supported this to the end! #fndresearch #phdsubmission
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Fightback Against FND@FndFightback·
@DisbldUrbanFarm We have "Talking Therapies" in the U.K. which is like basic psychotherapy for mild anxiety or depression. But the FND services are telling patients it can help with FND (though they can't) so are telling patients to report anxiety/depression just to get a foot in the door. Crazy!
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ThatDisabledFarmsteadLife
ThatDisabledFarmsteadLife@DisbldUrbanFarm·
@FndFightback Nope, and my therapist said she didn't understand why my medical team thought it would help. I've had CBT for years, working through trauma, and my FND has just gotten worse, so...
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Fightback Against FND
Fightback Against FND@FndFightback·
Have just finished a course of Cognitive Behavioural Therapy (CBT) aimed at treating Non-Epileptic (Functional) Seizures (NEAD), and I honestly don't feel any better. If anyone else has tried CBT for NEAD/NES, did it help? 🤔
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Fightback Against FND@FndFightback·
@Playtus1 I hate this whole "face your fears" narrative which implies that Avoidance traits are the cause of worsening FND/NEAD symptoms. I feel that the psychologizing of FND is drawing attention away from finding and treating the biological/organic physiological triggers.
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Playtus
Playtus@Playtus1·
@FndFightback CBT made me relive a traumatic incident like it was yesterday. I have NEAD and I still can't find anything that works. I take Hypervase for my flash backs and that is one thing that truly works.
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Fightback Against FND
Fightback Against FND@FndFightback·
@FoxPsyche101 Really sorry to hear that. In my experience therapists seem to believe that CBT is a "cure", so when it doesn't work, they claim that it must be the patient's fault for not trying hard enough. Personally I think CBT is bogus quackery, but I know not everyone shares that view.
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a MAN in NEAD
a MAN in NEAD@aMANinNEAD·
@FndFightback My therapist was mixed. She was nice but also a bit rude and challenging. I didn’t find it helpful and made me suicidal.
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Fightback Against FND
Fightback Against FND@FndFightback·
@MyVoucherCodes I can't log into my account. It says the password is incorrect, but the password reset link doesn't send me an email either. Can you please advise how I can access my account?
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Functional Neurological Disorder Society
🗣 New FND research💡 update! After a successful launch in Australia, FND Research Connect is going global 🌐. FND Research Connect aims to bring together 👐 people affected by Functional Neurological Disorder and researchers. By signin🗣 New FND research💡 update! [1/n]🧵
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Michael Crawford Hick
Michael Crawford Hick@mchphotoworld·
Please help me make a disabled sports magazine as nothing exists out there. I can capture the photos, now I need help in funding the first issue with people and printing cost can you help? Please share /retweet as far as possible Thank you gofund.me/0666340f
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Wolfson Neuro Rehabilitation
Wolfson Neuro Rehabilitation@WolfsonNeuro·
It’s senior neuro OT education time at the Wolfson. This month: FND across the pathway. First up is Aoife Sheehy with the consensus guidelines by @CNicholsonOT and colleagues
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FND Portal - is no longer on X
“Cadenza” is my deep-dive essay on the history, biology, and social impact of FND. Please consider checking it out if you haven’t already. Many people have this condition and have been abandoned by medicine. This is my best attempt to tell the story. @fndportal/cadenza-for-fractured-consciousness-e9c236dc7bf2" target="_blank" rel="nofollow noopener">medium.com/@fndportal/cad…
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LifewithFND
LifewithFND@FndLifewith·
RESEARCH CALL-OUT 🚨 An Exploration of Self-As-Context in Individuals with Functional Neurological Disorders. If you’re interested contact the researcher via their email address.
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Tom Plender
Tom Plender@TomPlender·
Maverick 🏆 💸 The GOLDEN Dawg 🏎️💨🇯🇲🇳🇴🏁🤘🏽@GeecheeThreat

@TomPlender @FndPortal @FNDAction & with regards to genetics and FND, there is NOT enough information for African American, Caribbean, or Mixed Race folks — I belong to all three groups. I’d love to try to see which line may have the genetic biomarkers for FND and PNES if they exist, but…idk who or where to go

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Functional Neurological Disorder Society
📚 Discover the FND Resource Library! This is a curated selection of journal articles and video lectures in the field of FND - available to all FNDS members! Ideas for learners and health professionals who want additional resources. Check it out here: fndsociety.org/members/fnds-r…
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Jon Stone
Jon Stone@jonstoneneuro·
An excellent collection of new papers on FND. If you can’t access then consider emailing the corresponding author
David L. Perez MD, MMSc, FAAN, FANPA@DavidLewisPerez

Sharing our 13-article volume on Functional Neurological Disorder in @ClinicsReviews. Great working alongside #SaraFinkelstein as co-editors, and a MAJOR THANK YOU to our international panel of co-authors! Check it out. 1/14 @FNDSociety @FNDHope @MGH_RI neurologic.theclinics.com/article/S0733-…

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Fightback Against FND@FndFightback·
For any GPs and Healthcare Professionals out there, this thread is definitely worth a read 🧵
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