Alykhan Asaria
@AlykhanAsaria
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Lived experience mental health researcher and NHS volunteer. Please share the article in my pinned tweet to raise awareness that EDs are not untreatable.
United Kingdom
Joined August 2023
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Pinned Tweet
Spread hope for
#eatingdisorder
sufferers who are unfairly labelled as ‘untreatable’, 'treatment-resistant', or 'terminal'. Please share/repost my new article ('Terminal anorexia': a lived experience perspective on...):
The take-home messages include:
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"A sufferer who protests that there is no hope left may actually need the clinician to hold the hope for them, until they can carry it on their own... They may need clinicians to give them permission to live rather than permission to die."
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My new article on the harmful and unnecessary label ‘terminal anorexia’ has just been published by the Journal of Eating Disorders. Please read and share.
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‘Terminal anorexia’: a lived experience perspective | Journal of Eating Disorders | Full Text
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I received an acknowledgement from
@NHSEngland
of my letter of concern regarding 'palliative pathways' for ED sufferers. This is an important first step for demoralised ED sufferers who need to be heard. Please continue to share:
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I am touched by the response to this quote from my first article. There is so much hope for sufferers who are given up on because some clinicians 'treat' them as untreatable. Many more clinicians hold hope for them. If you are one of them, please spread hope for them.
"A sufferer who protests that there is no hope left may actually need the clinician to hold the hope for them, until they can carry it on their own... They may need clinicians to give them permission to live rather than permission to die."
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I sent this letter of concern to
@NHSEngland
earlier today, regarding
@NHSEastEngland
guidelines for treating longstanding AN sufferers.
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I often wonder whether clinicians who treated me years ago ever think of me, or even remember me. I think of them all the time.
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Surely, the role of a clinician should not be to "tease out" of a patient whether they really want to die, and whether their expressions of despair are 'authentic'? Death is not a game to be played with. Life is precious.
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Please read my recent lived experience article, and share the hope for eating disorder sufferers who are unfairly labelled as ‘treatment-resistant’, ‘untreatable’, or ‘terminal’.
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I co-wrote this letter with
@jamesldowns
and
@HopeVirgo
, who have campaigned tirelessly for ED sufferers for years. It responds to unsatisfactory reassurances from NHS England’s National Mental Health Director. (1/2)
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Independent research is very difficult when you don’t have access to most journal articles because you are not part of an institution, and therefore have to pay more than most books just to read one article.
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"... they have identities... that go far beyond their eating disorders. They should not have to feel that defeating their ED requires defeating their whole selves... they can and deserve to live (not just ‘exist’ or wait to die)."
#hope
#eatingdisorder
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Letter of Concern to NHS England about 'Palliative Pathways' for Eating Disorder Sufferers
Follow-Up Letter of Concern to NHS England about Eating Disorder Care
“Limited progress in addressing the poor quality and effectiveness of eating disorder services is causing avoidable harm.”
@RobBehrens1884
warns Maria Caulfield that more action is needed to address the system for treating people with eating disorders.
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I'm glad the label ‘terminal anorexia’ has in principle been withdrawn by Dr Gaudiani. Its dangerous misuse by professionals in the real world, and the heart-crushing concept, needs to die. People with eating disorders should never, ever have to die unnecessarily. (1/3)
#ICED2024
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Trying to ‘achieve’ a perfect diet is not healthy eating. There is no such thing as a ‘perfect’ diet, despite what some people (often with self-interests) may claim.
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Person-centred care means patients are treated as unique individuals, not just ‘service users’. I’m not sure if that exists anymore.
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"Research is not just read, seen, and heard about by the professionals who promote it. Vulnerable and conflicted ED sufferers, and their families, can be victims of theoretical academic discourse that has real-world, life-or-death implications." (2)
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Please read and share my article if like me you have been affected by recent discourse about treatment withdrawals.
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I just received this response to my letter of concern but have not had time yet to read it.
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"Above all, we should be debating about how, as therapeutic allies, we can give
#eatingdisorder
sufferers the right to truly live – not just exist, survive, or wait to die."
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If someone with an ED relies on processed bread to eat a sandwich that keeps them alive, then so be it.
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“‘Terminal anorexia’: a lived experience perspective on the proposed criteria” is a follow-up to a related article (“‘Terminal anorexia’: a lived experience perspective”) that was published by the Journal of Eating Disorders earlier this year:
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@autisticpuffin
I'm so sorry. This happens extremely frequently, so you are not alone in feeling this way. I briefly addressed some of these issues in a recent article (the link is in my pinned tweet), but of course every ED sufferer is unique, so what I wrote does not apply to all sufferers.
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My new article is a follow-up to this paper, which was published by the Journal of Eating Disorders in July 2023.
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Please help me to spread the hopeful message that eating disorders should never be be considered untreatable or ‘terminal’.
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It always confuses me whether insensitive media reporting is due to their lack of awareness, or their conscious desire to make newsworthy stories regardless of the costs to vulnerable people.
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Patricia and her family deserve so much better. I wish I could write another letter but I'm lost for words after the second article by
@JanetEastham
. 💔
@kateparminter
@carolinenokes
@DrLadeSmith
@HopeVirgo
@jamesldowns
@mariacaulfield
@PHSOmbudsman
@AgnesAyton
@danny__kruger
I received an acknowledgement from
@NHSEngland
of my letter of concern regarding 'palliative pathways' for ED sufferers. This is an important first step for demoralised ED sufferers who need to be heard. Please continue to share:
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“Above all, we should be debating about how, as therapeutic allies, we can give ED sufferers the right to truly live – not just exist, survive, or wait to die.” (3/3)
#ICED2024
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I’m constantly torn between blocking out the world and trying to convince myself that I can change it.
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Bone density CAN increase if you have osteoporosis, despite what so much eating disorder research says.
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Mind calls on UK’s Covid-19 Inquiry to consider mental health impact of pandemic - Mind
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Just a personal opinion - Some of the heart-crushing numbers and photos shared widely in news articles are not helpful for some individual ED sufferers, even though it may be in the name of raising awareness for all. Avoiding these triggers is not so easy when they are broadcast.
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Mental health research and quality improvement need to be integrated far better.
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I think I'm a pessimistic idealist. Or maybe an idealistic pessimist. Either way, I've lost faith in humanity.
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If I were a treating professional, I'd rather give hope the benefit of the doubt - for my patient above all, but also for myself, to make sure I don't give up on her/him.
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If hope could be prescribed, it would be one of the most healing medications.
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“Vulnerable and conflicted eating disorder sufferers, and their families, can be victims of theoretical academic discourse that has real-world, life-or-death implications.” (2/3)
#ICED2024
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I'm really sorry, I should have said longstanding eating disorder (not just anorexia) sufferers in this tweet. All EDs (including BN, BED, ARFID, OSFED) deserve equal consideration, as they are all devastating illnesses. To all ED sufferers, please look after yourselves ❤️
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"Patients with anorexia, he said, are often keen students of their disorder; they read the academic literature about it. As a result, for the first time in his career, he has had patients in their 20s ask about palliative care and assisted deaths." - Dr Philip Mehler (1)
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It’s such a relief when words are not needed to express how you feel.
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Evil inflicted by murderous terrorists does not justify evil sanctioned or overlooked by international governments. My heart goes out to Israeli and Palestinian civilians who have been killed or had their lives ruined.
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@AgnesAyton
@jamesldowns
Yet all ED research I have read states as a matter of fact that osteoporosis as irreversible in patients! 🙂
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The article by
@katieengelhart
in
@NYTmag
on
#terminal
#anorexia
and
#palliative
care highlights the need for all perspectives to be heard during this tragic discussion. So, please read and share my concerns written in this article published last month:
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@AgnesAyton
@beatED
@FEAST_ED
@uksciencechief
@PHSOmbudsman
@JeffStelling
@HopeVirgo
Thank you for helping me to spread the positive message. Hope is so important for ED sufferers, their loved ones, and even professionals (who may understandably feel disheartened sometimes)
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Maybe having dreams is better than them coming true, as it means that you can still have something to look forward to.
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@EDsetMefree
@beatED
@ClaireCNWL
@FEAST_ED
@kateparminter
@DrLadeSmith
@NHSEngland
@ptsafetylearn
@CharitySANE
@Rethink_
@Carolineslamb
Your story is so inspiring and heartening to read. Thank you for sharing it ❤️. Another courageous individual had a similar experience; she is quoted in my article ( ) .
@AgnesAyton
@OxfordHealthNHS
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It’s very confusing in my head. But at least confusing is familiar.
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@jamesldowns
James, your kindness always warms my heart. Your words mean so much to me, and they remind me not to lose faith when it feels like no one is listening :)
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Hope and compassion are so important in the treatment of all mental illnesses.
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@_madi_faith
@AgnesAyton
@jamesldowns
I have been told quite a few different things! I think what really matters is that bone health can improve - whether or not the bone mineral density score (which I think is just a relative number based on age and sex) is in the osteoporosis or osteopenia range❤️
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The willingness to be present, to stay, to not leave – even when there is silence – speaks a lot louder and hears a lot clearer than words.
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@KitchenBee
Thank you for helping me to spread this hope for people who struggle to carry it on their own
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This article () by
@emmelclein
is the most powerful media article on ‘terminal anorexia’ that I have read. A very moving read. It reinforces everything I wrote in my two journal articles last year.
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It is important that people like me with lived experiences (as well as clinicians and researchers, who may also have lived experiences) listen to others with lived experiences.
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Few things amuse me other than the self-deprecating 'black humour' that I joke to myself when I'm detached. It's sadly funny to me.
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I admire researchers and clinicians who value the voices of those whose opinions they do not necessarily agree with, and in some cases, even encourage these voices to be expressed and heard.
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This would not have been possible without you. I am humbled that you value my perspective.
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"Remember, remember, this is now, and now, and now. Live it, feel it, cling to it. I want to become acutely aware of all I've taken for granted." - Sylvia Plath ❤️
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@norourke78
@xoxy_Rissa
I’m so heartened that you no longer feel that way ❤️. People like you are inspiring and need to be heard
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I've always wondered whether it’s better to have a broken heart that has at least experienced love from another person, or a cold heart that has never been warmed by the love of another person, and therefore cannot be broken.
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Wanting to be liked but not wanting to be known or found.
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@gonefishin752
@AgnesAyton
@ChrisPalmerMD
@Metabolic_Mind
Please don’t be sad! I believe in recovery, whether or not this means being ‘cured’. Recovery means different things to different people. Every sufferer can recover according to their own definition of recovery if they are given the right support and treated compassionately.
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@AgnesAyton
I don’t understand why we have to disprove what researchers say if DEXA scans do it for us!
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@jamesldowns
@NHSEngland
I hope that because my letter has been publicly shared, and their response will also be, they do not send a default and impersonal response.
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The most precious memories are also the most painful to remember.
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You can read my second (follow-up) article here: ……… . Some of the key points are outlined in my pinned tweet.
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@AgnesAyton
In the short-term for someone with autism who can’t be flexible? Isn’t eating something less unhealthy than eating nothing? The lesser of two evils? 😟
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@AgnesAyton
@rcpsychEDFac
I’m really blessed we crossed paths nearly a year ago! Thank you so much 🙂
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@AnorexiaMyths
@JenH_EDSUK
I’m so heart-warmed to hear that your daughter is better. I’m sure there are many others who are blessed and inspired to meet her now ❤️
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We don’t have time to wait for scientific evidence that justifies saving lives. Compassion should be enough justification in the short-term, surely?
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"Because she was on palliative care, Naomi’s doctors were prompted to indicate, after appointments, whether they expected her to live longer than six months. Sometimes they did, and sometimes they didn’t." ... Is this ethical and professional. Is it moral and humane?
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@HadleyFreeman
@HarperCollins
Hi :). I quoted some emotive words from ‘Good Girls’ in an article that has just been published by the Journal of Eating Disorders.
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@jillian_rigert
Thank you so much 🙂. I have written a more detailed follow-up article that will be published very soon
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@LouiseW_psych
Thank you Louise :). You are so right - hope and compassion are crucial. The article would have been worth writing even if only you and your loved one were the only readers.
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I wish someone could teach me how to help others when I’m feeling helpless.
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You can read my second (follow-up) article here: …… . Some of the key points are outlined in my pinned tweet.
"A sufferer who protests that there is no hope left may actually need the clinician to hold the hope for them, until they can carry it on their own... They may need clinicians to give them permission to live rather than permission to die."
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@Katie_Bee86
@DavidViljoenED
@NHSEngland
@NHSEastEngland
Treatment has failed you, not vice versa. I want to try helping you personally, not just others. Can I write your question in a follow-up letter to NHS England? Your voice deserves to be heard, and your question deserves an answer.
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Please join me and add your name to this open letter
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@GraceHBDalton
Hi Grace :). I agree with you. I wrote in a letter of concern recently: "NHS EoE’s guidance suggests that at a given point in time, patients have a binary choice between ‘recovery’ and ‘harm-reduction’. However, these two approaches are not mutually exclusive...
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@ehardyjb
You are absolutely correct - people who relapse "have not failed treatment. In fact, it is far more likely that treatment has failed them... patients who are given up on by professionals... are far more likely to give up on themselves also." (p.8)
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