Carole Bruce
@CaroleBruce17
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šArt, Nature, Books, Some Music. Severe ME 32 years. Daughter severe 38 years. Furious about treatment of ME. https://t.co/gEIrl86Wim
Gloucestershire
Joined June 2017
25% of #ME patients are bedbound, canāt walk and canāt take care of themselves. 75% are mostly housebound and canāt 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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Iāve just written something to be read at the memorial service of a dear close friend who, after Covid and then Shingles felt her mildish #ME worsening rapidly. Living alone, she couldnāt find the help she needed to live with dignity. She quietly took her own life. Our realityš.
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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. š.
@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. Itās not taught in Med schools š¤¬.
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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 donāt need shoes. I used to love my shoes 30 years ago. #MEAwarenessDay2023
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Thereās 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 itās 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 āeverything is normalā. 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 canāt 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 donāt recognise this world as ableist.
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Sad to hear that @drclairetaylor has Covid and is feeling very rough. I hope she feels better very soon. #ME #LongCovid.
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Executive function and language are the big areas of cognitive disfunction in #ME and #LongCovid Itās often what stops our ability to work or socialise. Itās not brain fog, itās not fatigue, these are derogatory terms that minimise a severe problem that needs researching.
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This is what Millieās 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 š
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Millions of us are missing. You wonāt see most of us. You wonāt 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 couldnāt understand why you werenāt the old you any longer. #MEAwarenessDay
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āI exist but I donāt 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.ā.#ME #MyalgicE #MedTwitter
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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. Itās dreadful and endless.
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āThe interpretation of #ME as a purely psychiatric illness by two men took the wind out of early research into the conditionās physical causes and gave energy to psychological treatments, with devastating consequences ever since.ā
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#ME #MECFS #pwme. How long have you been ill?. Weeks, months, years, decades?. #LongME #LongMECFS #LongMyalgicE.
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Sheās 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 psychiatristās explanations and here we still are with more joining us every day.
āI would describe #LongCovid as having the worst hangover of my life, together with a bad flu, together with food poisoning ā all at once, every single day.ā. Powerful testimony from @giorgialupi via @nytimes tiktok/ig
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Thereās 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 itās compounded by the constant attacks and denial of our reality by those who could help.
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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 charitiesā¦.this is how itās 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. Itās never a quiet and peaceful release, itās 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! š„µ.#SevereMEDay.
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Several friends of mine with #ME, have taken their own lives. They did not want to die, they wanted to live, even with restricted lives, they wanted care and support to enable them to live without insult. Itās not available so they chose to die alone, uncared for. Help them live
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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. Itās a problem!.
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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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@ITV @Suej1959 People have died, people (like me) have laid in bed in darkened rooms for decades, children have been removed from their parents, itās endless. For the sake of benefit agencies, insurance, governmentās 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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@GeorgeMonbiot Thank you so much. This article is what Iāve been waiting for for years. So grateful. Youāve done so much for us ME patients and continue to do so. It is disturbing and so many of us are the victims.
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Hard copy of article from The Times on the inquest into the death of Maeve Boothby OāNeill aged 27 from #ME The inquest continues for the next two weeks.
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āA doctor from Leeds who developed long Covid and the debilitating effects of #ME has said NHS patients like her have been āleft to rotā.
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#dysautonomia so often ignored in a #ME #MEcfs diagnosis. I wish Iād 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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Itās 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 isnāt stalwart with a past history of athletic prowess. Being ill with no support can be terrifying.
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I wasnāt 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. š.
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HIV/AIDS recognition tookĀ about twenty years. By contrast, #ME was first documented more than eighty years ago but patients are still not routinely recognised as having a ārealā illness and there is still no effective treatment. Funding is minuscule. #LongCovid a new illness š¤¦āāļø.
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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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Someone else promoting a book about how they recovered from #ME āME left me bedbound for nearly five years. A potted plant helped me rebuild my lifeā.Is this the same illness that leaves so many of us bedridden for decades? š«¤
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47 psychologists, academics and psychiatrists who believe #ME to be a biomedical condition have signed this š to the British Psychological Society about the DHSC delivery plan. ššš .Please pass this on. š.
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 diseaseā.
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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 oneās 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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āSome long COVID advocates are focused on blocking the NIH from using Congressionally directed funds from benefitting ME/CFS and other post-viral diseasesā. 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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Itās 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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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 Iām 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 ++. ā”ļøNot being able to have children Not being able to have a career ++. #MEcfs.
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Itās 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. Despairš.
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Language counts. Words such as ābrain fogā, āfatigueā, āunrefreshing sleepā and so on were carefully brought it to daintily label what are devastating, raw, excruciating symptoms. Letās not add to the stigma. Letās fight back via language even if we are cognitively damaged. #ME.
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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. Itās 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 āchoosesā to be healthy and that I āchooseā 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. Itās 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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Itās 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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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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People have died, people (like me) have laid in bed in darkened rooms for decades, children have been removed from their parents, itās endless. For the sake of benefit agencies, insurance, governmentās psychiatrists have derailed medical treatment and research. Please help! #ME.
@Suej1959 The social team is heading to the commissioning team in the morning with a list of scandals we need to make shows about. Itās growing by the minute! š„.
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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.
Itās 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 Itās crazy itās spreading like a wildfire and itās not mild, itās completely knocking out children and parents. I canāt get my head round why masks are bad and ventilation is missing.
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@doctor_oxford A close friend recently took her own life, she didnāt want to die but, post Covid, her MEcfs worsened and she couldnāt find the appropriate care for her to live. She loved life, even a restricted one but couldnāt find the help to let her go on living. Help to live not die needed.
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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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Kirsty Young on radio 4 just now hosting Miranda this week. She believes she'll have "full energy in a year" by "saying no to things". This is trite and frankly irresponsible to use a huge platform to spout platitudes around #ME when right now several patients are facing death.
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Living with #ME there is .actual loneliness as we canāt tolerate much social interaction and existential loneliness as we have been cast out of a medical system that we expected would help us. We are the untouchables of the medical world. #GreatestMedicalScandal
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Blood work seems pointless for #ME. It can pick up other problems but never gets anywhere near the root of the matter. Itās a get out for medics who say, āyour blood work is fineā and back off. Blood tests need to be radically updated to reflect current medical problems.
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Really important notice. We are all tired but this could be terribly important. Please retweet. š„š„š„. NICE have asked for at least 50 case studies from people whoāve been harmed by Graded Exercise Therapy. They need them today.
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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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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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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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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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Time, pacing and rest until we draw our last breath seems to be the ātreatmentā offered for #LongCovid and #ME #MECFS Exciting stuff isnāt it?.
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āItās 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.ā.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 ā¦@sajidjavidā© on the urgency of help for #ME sufferers.
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