Carole Bruce
@CaroleBruce17
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💙Art, Nature, Books, Some Music. Severe ME 32 years, would love to be released from this one room. Daughter severe 38 years. Furious about treatment of ME.
Gloucestershire
Joined June 2017
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#ME
is a violent, turbulent condition. Words like brain fog, tiredness, aching, mood disturbance, interrupted sleep patterns, do not begin to describe the turmoil of
#MECFS
bodies. It’s like being attacked by a malevolent being, often for decades and without help or understanding
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319
1K
25% of
#ME
patients are bedbound, can’t walk and can’t take care of themselves. 75% are mostly housebound and can’t work. Most struggle with socialising. Scientists say
#MECFS
has been triggered in about half of
#LongCovid
cases. No treatment no cure.
#MyalgicEncephalomyelitis
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923
Celine, a member of the
#ME
community has chosen to end her life this morning. Her illness and the lack of care and treatment has made her life unbearable. Tragically she is not alone feeling this. My thoughts are with her family and friends and all of us
#pwME
who suffer too. 💔
@ArlettePoolen
Utterly heartbreaking. Unfortunately, I have patients like Celine. No one sees them. The people who call ME psychological do not see people who are in bed 24/7&cant tolerate light or sound. It makes me so angry that we are not pulling out the stops to treat this. Heartbroken.
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#ME
is a neuroimmune, neuroinflammatory illness that affects numerous organ systems throughout the body, involving dysfunction of the vascular, autonomic, neurological, mitochondrial, metabolic, connective tissue, endocrine, and immune systems. It’s not taught in Med schools 🤬
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These empty shoes are representative of millions of people with
#MECFS
who no longer need shoes as they struggle to get out of bed. They lead painful dependent lives that don’t need shoes. I used to love my shoes 30 years ago.
#MEAwarenessDay2023
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687
There’s been so little written about grief in chronic illness, all the grief books are about death. The ongoing, gnawing grief of the limbo,not death but not life the case of
#ME
it’s compounded by the constant attacks and denial of our reality.
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Throughout the pandemic
@Tesco
drivers have kindly filled bags I leave in my porch with my order Last week a driver dumped two heavy crates on top of the bags saying Covid was over and he would collect crates next week I explained I am disabled unable to lift crates, he ignored
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#LongCovid
patients are experiencing what
#ME
patients have experienced for decades, namely the inadequate, clumsy, antiquated, basic (add any other adjective here) tests that we undergo to show that ‘everything is normal’. We all need better, more thorough testing pronto.
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#LongCovid
patients are beginning to experience the useless clinics, political indifference, interference by psychs, media misinformation, confusing studies, and lifestyle advice from the healthy that
#ME
#MECFS
patients have experienced for decades. Deep commiserations.
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Thank you so much to all the
#LongCovid
patients who have included
#MECFS
in their posts, articles and comments. We know it can’t always be easy to face such a complicated and contentious condition as ours, our stories can be grim.
You have given us hope, solidarity friendship.
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Increasingly sick of lifestyle gurus, grief experts, pop psychologists who glibly imagine that everyone is healthy enough to phone friends, get exercise, cook from scratch, get a hobby, enjoy nature. Until one has been ill for a long time we don’t recognise this world as ableist
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Executive function and language are the big areas of cognitive disfunction in
#ME
and
#LongCovid
It’s often what stops our ability to work or socialise. It’s not brain fog, it’s not fatigue, these are derogatory terms that minimise a severe problem that needs researching.
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This is what Millie’s family is asking for, just this. Too many people with
#SevereME
have already died. Please let this be a turning point and let
#ME
be treated as the biophysical illness that it is for all patients.
#DontLetMEDie
#BringMillieHome
🙏
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Millions of us are missing. You won’t see most of us. You won’t hear most of us. Could you imagine if you caught a virus and never recovered? Drs dismissed you are could offer no help. Family and friends couldn’t understand why you weren’t the old you any longer.
#MEAwarenessDay
3
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495
“I exist but I don’t live and this condition has become unbearable to me and has been for a long time now, to the point where I want to end my life.”
#ME
#MyalgicE
#MedTwitter
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489
Like many thousands of others I have been living in one room, in the dark, for over 3 decades. Subjected to disbelief, apathy, ignorance and hostility. The
#NHS
offers no treatment, no understanding nor support. We need outrage on our behalf. Radical change now.
#SevereMEDay
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My daughter has had severe
#ME
for 36 years. She lives alone in a tiny flat year in year out. She has a violent neighbour. She has never lost her humanity, endless kindness, interest and wisdom. She cannot pursue her great artistic gifts, she is on survival. She is
#CloseToMe
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#ME
#LongCovid
When is this symptom, so well described by Ed Yong, going to be near the top of the symptom list and made a priority in research? This is what prevents so many of us from working, being able to communicate with family, friends and HCPs. It’s dreadful and endless.
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“The interpretation of
#ME
as a purely psychiatric illness by two men took the wind out of early research into the condition’s physical causes and gave energy to psychological treatments, with devastating consequences ever since.”
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She’s describing exactly what
#ME
patients have been describing to Drs for decades. So psychiatrists took charge, governments, benefit agencies and insurance companies concurred, media lapped up the psychiatrist’s explanations and here we still are with more joining us every day
“I would describe
#LongCovid
as having the worst hangover of my life, together with a bad flu, together with food poisoning — all at once, every single day.”
Powerful testimony from
@giorgialupi
via
@nytimes
tiktok/ig
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There’s been so little written about grief in
#chronicillness
all the grief books are about death. The ongoing, gnawing grief of the limbo, not death but not life either. In the case of
#ME
it’s compounded by the constant attacks and denial of our reality by those who could help
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#ME
#MECFS
#pwme
How long have you been ill?
Weeks, months, years, decades?
#LongME
#LongMECFS
#LongMyalgicE
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410
This response from a GP on Facebook. We
#pwME
are not blaming the vast majority of
#GPs
who are doing their best without the help of qualified consultants or suitable support in hospital. Education is lacking and disagreement and stigmatisation is rife
#MaeveInquest
#ME
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The first time, to my knowledge, that there has been such a serious, impeccably researched article published in a national newspaper.
#ME
charities….this is how it’s done.
@GeorgeMonbiot
and
@guardian
is giving you a template.
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Trying to rest in an
#ME
crash is like lying at the shoreline on a stony beach with waves crashing over and over your body. It’s never a quiet and peaceful release, it’s a clinging on until the tide turns then lying beached and breathless until the next time
#MEAwarenessWeek
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Tragic that this magnificent tree, a symbol of something lasting for the joy of others, something that was just always there, has been senselessly felled.
Apparently a 16 year old boy has been arrested for the crime. Somehow that makes it even sadder.
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Update: Alice is still with us but is able to take in little feed. they didn't feed her at all over the weekend. Sadly, another case in the same locality who is more advanced than Alice and no doctor will take responsibility for her. The family does not want any publicity.
#MECFS
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Yesterday for the first time ever, because of a scary escalation of symptoms I had to ring 111. The person on the line had never heard of
#ME
only vaguely of
#CFS
after lengthy questioning she suggested I take Paracetamol. This is how the
#NHS
supports severe ME! 🥵
#SevereMEDay
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This has been my view all day, every day for 28 years. I am imprisoned by M.E. I cannot stand much light, nor sound, nor touch. I cannot speak much. There are millions worldwide just like me. We have had no medical help whatsoever.
#MEAwarenessHour
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Just to clarify what severe
#ME
is:
My daughter severe for 35 years, me 29 years. Severe means over 90% bedbound, never leaving the house, darkened rooms, earplugs, hard to speak and no support or recognition by major institutions. Constant gaslighting by psychs
It’s a problem!
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@ITV
@Suej1959
People have died, people (like me) have laid in bed in darkened rooms for decades, children have been removed from their parents, it’s endless. For the sake of benefit agencies, insurance, government’s psychiatrists have derailed medical treatment and research. Please help!
#ME
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There are no words to fully describe the tragedy of being disbelieved for decades for us
#ME
patients. Since
#LongCovid
appeared we are beginning to see some validation for the first time since the psych lobby took over our lives and declared our thoughts to be the problem.
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Hard copy of article from The Times on the inquest into the death of Maeve Boothby O’Neill aged 27 from
#ME
The inquest continues for the next two weeks.
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#dysautonomia
so often ignored in a
#ME
#MEcfs
diagnosis. I wish I’d known about it years ago. I would have avoided so much worry and self-doubt. I was a sitting target for the snake oil vendors.
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My beautiful daughter has had ME for most of her life, she lives alone in a tiny flat never seeing trees or flowers, hills or streams. She cannot cope with visitors. I, her mother, cannot help nor support her as I too live with ME 100 miles away from her Tragic
#MEAwarenessHour
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#ME
patients have been denied such scans, most have just had simple blood tests. If we had not been labelled psychiatric cases who were tired over 30 years ago, there would probably be treatments for
#LongCovid
now.
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It’s so hard for chronic illness sufferers to share their feelings safely without being labelled as psychosomatic. We are all aware that BPS proponents will jump on anything that isn’t stalwart with a past history of athletic prowess. Being ill with no support can be terrifying.
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I wasn’t going to post anything on
#MEAwarenessDay
this year. I had nothing to say. Then I thought of my lovely friends who suffer this bloody awful illness every day with courage, kindness, humility, humour, vulnerability and wit and I just want to thank you all so very much. 💙
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HIV/AIDS recognition took about twenty years. By contrast,
#ME
was first documented more than eighty years ago but patients are still not routinely recognised as having a “real” illness and there is still no effective treatment. Funding is minuscule.
#LongCovid
a new illness 🤦♀️
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Do you think that the majority of
#ME
people who post on here are more severe than most of the ME population? I just saw photos of my local Facebook ME/CFS group where 67 of them had a real life tea party yesterday in a big hall. Good for them but my ? remains. Few of us cd do it
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47 psychologists, academics and psychiatrists who believe
#ME
to be a biomedical condition have signed this 👇 to the British Psychological Society about the DHSC delivery plan. 👏👏👏
Please pass this on. 💙
47 psychologists, academics & psychiatrists have signed an open response to
@BPSOfficial
re the DHSC Interim Delivery Plan for
#MyalgicEncephalomyelitis
, stating that
#ME
is a 'serious, chronic, systemic, potentially life-threatening biomedical disease’.
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People without
#ME
and now
#LongCovid
understand fatigue to be something rather delicate and something that can be cured by a good rest or sleep. What I, and I think others experience is more of a near death experience. In the midst of it one’s whole body and mind shuts down.
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A candle for Anna Fitzgerald-Clarke.
Anna died on 25th Dec 2022 in hospital surrounded by her family.
Anna suffered with Very Severe
#ME
.
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‘Some long COVID advocates are focused on blocking the NIH from using Congressionally directed funds from benefitting ME/CFS and other post-viral diseases’.
From Health Rising
.
This is very sad and mean imo. A lot of
#ME
#MECFS
patients did and do their best to help
#LongCovid
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It’s becoming more and more obvious to me in watching
#MaeveInquest
that if the low blood volume situation was addressed by enough IV Saline and more expertise in feeding options was provided by the NHS, the lives of very severe patients could possibly be saved.
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It’s outrageous that we
#ME
and
#LongCovid
patients have to perform these trials on ourselves without medical assistance. Nicotine patches, LDN, Vagus Nerve Stimulators to name but a few, because there are no treatments trialed and implemented by medical professionals. Despair😞
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Language counts. Words such as ‘brain fog’, ‘fatigue’, ‘unrefreshing sleep’ and so on were carefully brought it to daintily label what are devastating, raw, excruciating symptoms. Let’s not add to the stigma. Let’s fight back via language even if we are cognitively damaged.
#ME
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This is my daughter A beautiful, happy girl who went to India and got ill. She never got better, has been rejected, insulted, forgotten and dismissed by Drs and hospitals, just like many other daughters. My heart breaks for her and I’m so proud of the woman she is despite it all
When you have severe ME for decades all the numerous small loses inevitably add up & lead to the huge loses
Not being able to get to the bathroom
Not being able to sit up & have a conversation ++
➡️Not being able to have children Not being able to have a career ++
#MEcfs
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Just reaching out in solidarity to anyone else who feels stuck in an endless loop of complicated symptoms and crying with grief and frustration about it all. It’s so bloody tough, sometimes an illusion of control and choice gets swept away in an instant.
#meawarenesshour
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Absolutely chilling.
I expect she thinks she ‘chooses’ to be healthy and that I ‘choose’ to be ill. The arrogance of the healthy.
Perhaps listening to people with conditions like
#ME
and choosing to fund research might bring more cash to the economy in the long run.
#pwME
Rachel Reeves is asked what she'd have done differently to Jeremy Hunt:
'We need to get people back to work. There are 700,000 more people due to be on sickness benefit.'
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Perhaps the government could fund research into the illnesses of the 2 million unfit to work instead of forcing them into work and more severe illness.
It’s logic, cure the illness and work and productivity will follow.
#ME
#LongCovid
#chronicillness
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We are living with energy limiting illnesses and yet we have to expend most of our tiny glimpses of energy in endlessly advocating for ourselves. We are rarely heard but what else can we do?
#ME
#LongCovid
#pwME
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If one lives alone and has little, inadequate or no care available, things like changing a light bulb, organising shopping, changing sheets etc are usually way beyond our capacity. Steady pacing is unicorn land for too many of us.
#ME
#LongCovid
#chronicillness
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It’s four years today since Merryn Crofts died from severe
#ME
My heart goes out to her family who miss her every minute of their lives.
Tragically no lessons have yet been learned by the medical profession that might prevent such tragedy happening again.
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People have died, people (like me) have laid in bed in darkened rooms for decades, children have been removed from their parents, it’s endless. For the sake of benefit agencies, insurance, government’s psychiatrists have derailed medical treatment and research. Please help!
#ME
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75
287
ME is a living death. I have lived in one room for 28 years, apart from hospital visits. I was a busy, working mother of four. Now I am 98% bedbound all day everyday. Often unable to speak. I have received no useful medical help whatsoever.
#MEawarenesshour
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One unpublished, not peer reviewed paper merits this clickbait headline? Shame on you
@guardian
on
#InternationalLongCovidDay
It’s disturbingly Orwellian that, on
#InternationalLongCovidDay
, there is a concerted effort across the press to downplay the condition. How awful for anyone struggling with
#LongCovid
.
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@KSchnickelfritz
It’s crazy it’s spreading like a wildfire and it’s not mild, it’s completely knocking out children and parents. I can’t get my head round why masks are bad and ventilation is missing.
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Too many
#MEcfs
patients are dying due to lack of education, acknowledgment, stigma. Dying in horrible circumstances.
#DontLetMEDie
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The whole business of food and keeping clean take up approx 98% of available energy, and still I crash. This is not what I had planned for my life.
#ME
#MyalgicE
#MECFS
#LongCovid
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Really important notice. We are all tired but this could be terribly important. Please retweet. 💥🔥💥
NICE have asked for at least 50 case studies from people who’ve been harmed by Graded Exercise Therapy. They need them today.
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If referred at all
#ME
&
#LongCovid
patients are sent to a variety of specialists with a variety of results. No one is then tasked with looking at the big picture, getting more detailed tests and joining the dots. Until such Drs exist I doubt that any progress will happen for us
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This is utterly heartbreaking. All our hearts are with
@swastrosarah
as she conducts herself with incredible strength and grace in the courtroom.
#MaeveInquest
#ME
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275
Time, pacing and rest until we draw our last breath seems to be the ‘treatment’ offered for
#LongCovid
and
#ME
#MECFS
Exciting stuff isn’t it?
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We are not crazy
We are not work shy
We are not simply stressed
We are not hysterical
We are not deconditioned
We are not hypochondriacs
We are severely ill people who have been ignored, gaslighted, patronised and lied to.
We have
#ME
#meawarenesshour
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‘It’s always been said that
#ME
is an illness of exclusion. This is not true. The pattern of symptoms is unique; there is no other illness in general medical practice that looks like this one.’
Dr David Bell
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@implausibleblog
Yes Hancock in charge, but also a collection of the worst of politicians and people in powerful jobs, many of them brought in to push Brexit through, at a time when the country needed the best, wisest and most honourable people leading us.
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Sajid Javid: Labour must deliver on ME as patients suffer without a cure
A new piece today from
@sajidjavid
on the urgency of help for
#ME
sufferers.
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I wonder if someone
@NICEComms
could point me towards ‘the people who care for me and the professionals who treat me’. After 28 years of severe
#ME
I’m still searching for such people.
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‘People with ME/CFS had the lowest median quality of life (QOL) scores of any disease tested. The next highest QOL score was 12% higher (bleeding ulcer)’
I’m still shouting this and similar studies into the void. Such a waste of energy as no one hears 🌚
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Just sending love to anyone connected to the difficult world of
#ME
it’s been such an emotionally charged couple of weeks for us all Few of us knew Maeve personally but through her story we have come to love and care about her and to see our own lives reflected in hers.
Just😢🫂
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I’m absolutely sick of the
#ME
charities and the APPG in Parliament treating ME advocacy as a ming vase and tiptoeing gently around the issues. Patients have died, it’s common knowledge that at least 3 young women are being mistreated in hospitals at the moment. Act now or go.
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From Maeve:
This is how she felt in her own words.
This was her experience. 💔
#MaeveInquest
#ME
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#ME
patients are never just tired or fatigued. We have bodies that hold hundreds of symptoms. The only treatment we are offered is rest which feels impossible when everything hurts and there’s no one to help.
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We are told to be vulnerable, to ask for help.
Well I’ve been lying in bed in a darkened room with earplugs in for 28 years waiting for help to arrive. It’s bloody hard to keep hoping and asking when there is no response whatsoever.
#meawarenesshour
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