Paula Knight @Paula_JKnight Twitter profile

Last Seen Profiles

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Paula Knight

@Paula_JKnight

1 year

Almost 5 yrs bedridden. I lie in the same space I worked, inclined at a similar angle. I can't weight-bear at all and require 24/7 care. Sometimes I can't speak. It's hard to endure this existence. Miss my life #MEAwarenessDay2023 #TreatME #WorldMEDay #MillionsMissing #ME #pwME

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Paula Knight

@Paula_JKnight

5 months

I'd suggest anybody berating chronically ill people for using social media to check their own (health) privilege and question if they themselves used social media more during lockdowns. Move on to what? A more isolated life with an untreated disease? #pwME #LongCovid

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Paula Knight

@Paula_JKnight

2 years

The idea that bedbound #pwME are 'giving in' to illness is insulting. It's not a choice. Why do healthy non-disabled public need to feel we're not giving in? This is the wrong disease for disability inspo. The media should stop peddling this #ME #MyalgicEncephalomyelitis #MEcfs

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Paula Knight

@Paula_JKnight

2 years

POTS isn't 'rare'. It's a commonly undx condition because Drs think it's rare. If people keep saying it's rare then they won't look for it and 'rare' become self-fulfilling prophesy. Tachycardia was put down to anxiety in my case before tilt table test confirmed #POTS

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Paula Knight

@Paula_JKnight

2 years

@hannahfearn Please could you write about the reasons that some disabled people can't 'just go & get it done'. Three years overdue. Bedridden. No one will do it at home. Spoken to MP to no end. Inequality of healthcare for people bedridden/ housebound - we are missing from this narrative.

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Paula Knight

@Paula_JKnight

2 years

Myalgic Encephalomyelitis isn't a self-improvement opportunity. I've learnt things I wish I'd never had to know, and I've learnt quite enough now, thank you. It shouldn't be a patient's job to do all the learning - that's what doctors are for. #LearnFromME #MEcfs #pwME #MedEd

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Paula Knight

@Paula_JKnight

2 years

It's #SevereMEDay Very severe ME Day 1,535 for me. Bedridden 4 yrs unable to bear weight, feed myself, brush teeth etc. Require 24/7 care from unpaid carer husband who is also trying to do ft job wfh. #MyalgicEncephalomyelitis #MECFS #SevereME #ME #MEKills #SevereMEweek

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Paula Knight

@Paula_JKnight

6 months

@BlondeHistorian Strange how they are centering the comfort of the non-disabled people in this group.

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Paula Knight

@Paula_JKnight

1 year

Everyone needs to read this. Health and able-bodiedness is only ever temporary and anybody suggesting taking benefits away from sick and disabled people unable to work would do well to remember that.

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Paula Knight

@Paula_JKnight

2 years

So angry about being bedridden I don't know what to do with it. Keep shouting about it even when I know most people have stopped listening. I'm not here because of a disease. I'm here because politics and medicine wilfully neglected it. #MyalgicEncephalomyelitis #MEcfs #pwME

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Paula Knight

@Paula_JKnight

2 years

Does it make people feel superior to think a person's organic disease is psychogenic? I'm not sure where it comes from - to decide, without any evidence, not to believe that someone is physically ill. I understand why psychs did it (money) but others? #MEcfs #pwME #LCME

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Paula Knight

@Paula_JKnight

1 year

When someone is bedridden, they didn't just decide to go to bed. There's no choice due to severe muscle weakness and exertion causing deterioration (PEM/PESE). Exertion for me is using my phone too much, coughing, laughing, crying. #MEAwarenessDay #MillionsMissing #ME #pwME

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Paula Knight

@Paula_JKnight

2 years

It seems that #LongCovid research keeps turning up with things that have already been seen in old #ME research/ autopsy - eg. hypercoagulation, and now ganglionitis. Don't worry, ignoring it has only wasted decades of people's lives #MEcfs #ME #LongCovid #PASC #MedTwitter

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Paula Knight

@Paula_JKnight

2 years

Being bedridden with vsME is nothing like being in bed healthy. It's not necessarily rest and comfort. It's pain and illness every day. It's being unable to stand or step. It's like a never-ending slow death. It's not a nice lie down. #MyalgicEncephalomyelitis #pwME #MEcfs #ME

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Paula Knight

@Paula_JKnight

2 years

I'm sick of patient blaming, patient shaming, patient ridicule towards those desperately ill without any help from their country's health provider. Until you've been in the same situation, no one has the right to judge, whatever treatment they try #pwME #MEcfs #chronicnneglect

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Paula Knight

@Paula_JKnight

2 months

@DrFrancesRyan PIP isn't just for adaptations it's for the extra cost of simply being disabled in our society, which won't be magicked away with this policy.

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Paula Knight

@Paula_JKnight

5 months

Infuriating things about ME No 1 is that research was knowingly and purposefully neglected, and initial research buried, in favour of patient blaming, gaslight and denial in order to deny welfare benefits. What an abject waste. #MEAwarenessHour #pwME #MyalgicEncephalomyelitis

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Paula Knight

@Paula_JKnight

3 years

And if some of us have diseases that are wrongly classed as primary pain because the cause hasn't been found yet and exercise makes our disease worse? Exercise isn't the answer to everything #drugshaming #chronicpain #exerciseshaming

Chronic pain sufferers should take exercise, not analgesics, says Nice

Medicines watchdog recommends physical and psychological therapies when treating pain with no known cause

www.theguardian.com

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Paula Knight

@Paula_JKnight

2 years

I doubt there'll be a happy ending in my life as a result of ME. At this point, I'd settle for a happy medium: Be able to move around house and garden, have visitors, converse, not feel like I'm dying, and be able to write. #pwME #mecfs #severeME #MyalgicEncephalomyelitis #ME

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Paula Knight

@Paula_JKnight

1 year

Suggesting severely ill bedbound people stay hopeful, positive, hang on etc. is unrealistic in a landscape of minimisation and biomedical research not happening fast enough. Saying so is empty platitude without advocacy and action. Solid reasons pls. #MyalgicE #pwME #pwLC #ME

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Paula Knight

@Paula_JKnight

2 years

Aside from practical help, which isn't always possible, one of the best things you can do for a friend isolated because of #ME is simply to stay in touch. Just a quick 'hello' every now and then to help them feel wanted, and that they still belong. #MEAwarenessWeek2022 #MEcfs

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Paula Knight

@Paula_JKnight

2 years

You can't 'help people back to work' if you've done nothing to treat or research the disease that's making them so ill they can't work. This logic seems to evade many politicians. Mental health care isn't the answer #LabourConference2022 #chronicillness #LongCovid #MEcfs #pwME

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Paula Knight

@Paula_JKnight

6 months

ME isn't 'tired'. It's a deficit of cellular energy. The process of making energy in the cells is not working properly. That's not the same as a healthy person feeling tired after activity. 'Everyone gets tired' was the first response I had from a friend after dx. #pwME

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Paula Knight

@Paula_JKnight

2 years

My life hasn't been taken away by ME. It's been taken away by every single person complicit in defunding/ not funding research into the disease, and everyone culpable for spreading misinformation and stigma about it. #MyalgicEncephalomyelitis #MyalgicE #pwME #MEcfs #SevereME

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Paula Knight

@Paula_JKnight

2 years

Severe #ME means having no imaginable future. It's about just trying to exist each day. I can't comprehend the future after almost 4 years of bedridden. How can I hope for anything when there are no treatments on the horizon? It's bleak #MEAwarenessHour #MEcfs #pwME #severeME

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Paula Knight

@Paula_JKnight

2 years

I wish I didn't have to spend any scraps of energy I (don't) have on following and trying to understand #ME research. It's too much, but I'm going to be 53 soon, I'm very severe, bedridden and hanging by a thread. I just want healthcare. It's 2022! #MyalgicE #MECFS #ME #pwME

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Paula Knight

@Paula_JKnight

2 years

@MetroUK_Life If someone is doing their job, performing the duties they are paid to do and leaving work on time, that's not any kind of quitting. It's working. Saying otherwise likely perpetuates the problem.

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Paula Knight

@Paula_JKnight

3 years

Last time I... Left the house: Sept 2020 (ambulance) Sat in my garden: Sept 2018 Saw my family: Easter 2018 Had a shower: Feb 2018 Washed hair: Feb 2018 Paddled: Sept 2017 Read a book: 2018 (hard copy) Socialised: Aug 2017 When will my Freedom Day be? #MEAwarenessHour #pwME

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Paula Knight

@Paula_JKnight

5 months

Blimey, this thread. Claiming that you've never met anybody with the said illness so that means it can't be true, is quite a narrow worldview. #pwME #pwLC #Fibromyalgia

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Paula Knight

@Paula_JKnight

3 years

The ME community must be one of the physically weakest, most fiercely engaged group of people who've never met each other fighting for health equality and disability justice right at the moment #MEcfs #stoptheharm #PublishThatGuideline #pwME #MyalgicEncephalomyelitis

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Paula Knight

@Paula_JKnight

8 months

@elle_carnitine The whole idea of illness being a punishment is quite toxic - especially if the ill person isn't even centred as the person experiencing it! Obviously it does affect family but this is quite a stretch. This is her stuff.

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Paula Knight

@Paula_JKnight

1 month

In 2019 my dad died the day after #MEAwarenessDay and I couldn't go to his funeral. This year I've become my mum's carer-from-a-distance. No siblings and bedridden. The people who delayed research have more to answer for than they'll ever know. #MyalgicEncephalomyelitis #pwME

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Paula Knight

@Paula_JKnight

26 days

Anyone who says patients are 'anti-recovery' is so far removed from our reality that they shouldn't be allowed anywhere near patients. To show such cruel disregard is anti-patient, self-serving and egregious. #MyalgicEncephalomyelitis #pwME #LongCovid #LightningProcess

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Paula Knight

@Paula_JKnight

2 years

I've been mostly bedridden for 4.5 yrs and completely bedridden for 3.5 yrs. For me that means I can't bear weight through my legs or get myself out of bed. I can sit up aided for v short periods of time but I can't get myself to upright. #MyalgicEncephalomyelitis #pwME #MEcfs

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Paula Knight

@Paula_JKnight

11 months

Wholly damaging article by @guardian #PwME don't have 'sensitivities' to our disease being treated as psychogenic, we know from scientific literature that it isn't. Report on biomedical research as you did two days ago. Stop enabling our abuse. People have died. #MyE

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Paula Knight

@Paula_JKnight

1 year

Severe/ very severe ME is your life, hopes and dreams being over but still being alive enough to experience the ongoing loss. It's to watch from the sidelines not knowing whether you'll ever be part of the game again. #MEAwarenessHour #pwME

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Paula Knight

@Paula_JKnight

2 months

#BringMillieHome #DontLetMEDie M.E. lives shouldn't be at risk in hospital. We badly need NHS protocols for ME hospital admissions, and feeding guidance. People have died from ME being psychologised. Please stop it happening again. @gmcuk @RCPhysicians @rcpsych @VictoriaAtkins

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Paula Knight

@Paula_JKnight

3 years

Exercise for all diseases evangelists are likely coming from a place of health privilege having never experienced intractable severe chronic pain. It is a holier-than-thou-everyone-else-is-lazy attitude with no knowledge of diseases for which exercise exacerbates #chronicpain

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Paula Knight

@Paula_JKnight

2 years

4.5 yrs today since I became bedbound. Not doing well. Wondering how much longer I can do this. I told myself 5 yrs at about 3 mths in. I know things unlikely to return to 'before' times, but I'd like the physical suffering gone. #MyalgicEncephalomyelitis #pwME #MEcfs #severeME

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Paula Knight

@Paula_JKnight

1 year

If anyone responds to #UrgentNormalSyndrome with 'but people just want to get on with their lives'. 'People' include elderly, CEV, immunosuppressed, chronically ill, disabled folks who now can't get on with their lives because majority are pretending C is over. #CovidIsNotOver

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Paula Knight

@Paula_JKnight

2 years

Holiday weekends can be difficult for people with chronic illness/ shielding. For me, the isolation that comes with being bedridden feels more acute when families gather and I sense people out and about doing nice things, parties etc #pwME #severeME #mecfs #ME #NEISvoid

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Paula Knight

@Paula_JKnight

10 months

August 8: Severe ME Understanding and Remembrance Day. Chosen for Sofia Mirza d. 2005. Today is my 1,900th day bedbound needing personal care. I've shared photos for the last 3 years. No changes in political urgency to help us. #SevereMEDay #MyalgicEncephalomyelitis #pwME

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Paula Knight

@Paula_JKnight

3 years

My usual GP has been ace over the past couple of years. Just spoken to them and they said that the profession needs to hold its hands up and admit that it has been wrong for a long time about ME. Attitudes need to change fast. #NICEguideline #MedTwitter #MedEd #pwME #MEcfs

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Paula Knight

@Paula_JKnight

2 years

1 I've decided not to collude with the preferred illusion that I'm not severely ill. If someone asks me how I am, I tell them the truth. If someone says they I hope I'm well, I say that, no, I'm not well. Each time I've done this, it brings no response #pwME #ME #MEcfs

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Paula Knight

@Paula_JKnight

2 months

Trending! #BringMillieHome #DontLetMEDie We need equal access to healthcare but we don't because many are afraid to go to hospitals as a result of cases such as Millies, Maeve's, Sophia's. It's 2024 and having ME risks being sectioned! @guardian @rcpsych @gmcuk @BBCNewsnight

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Paula Knight

@Paula_JKnight

2 years

If you hope someone with ME will 'get better soon' from a disease that has neither treatment nor enough funding for research, how do you imagine it will happen? Soon has long gone in my case. #MyalgicEncephalomyelitis #MEcfs #myalgicE #pwME #chronicillness #millionsmissing

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Paula Knight

@Paula_JKnight

1 year

@hannahfearn I think a lot of chronically ill and disabled people are struggling to want to vote Labour because of their disregard and erasure of us and recent benefit fraud propaganda. I feel politically disenfranchised now as a disabled person.

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Paula Knight

@Paula_JKnight

2 years

Pls can people stop with 'ME is a subset of long covid'. Sure, many will meet the criteria for ME as after any viral or infectious onset. Saying that a century-old disease *is a subset of a brand-new virus contributes to misunderstanding and erasure #ME #LCME #PwME #LongCovid

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Paula Knight

@Paula_JKnight

1 year

There's no such thing as a 'good day' when you have very severe ME, only degrees of bad days relative to one another. I'm bedridden all the time. I feel extremely ill all the time. Nothing good about that. #MyalgicEncephalomyelitis #pwME #verysevereME #mecfs #ME

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Paula Knight

@Paula_JKnight

2 years

Being bedridden is feeling a bit unreal. Can get through a few weeks and then it hits me - horizontal over 4 yrs incl. over 3+yrs unable to take a single step. How's this slow death acceptable? #MyalgicEncephalomyelitis #MEcfs #pwME #myalgicE #NEISvoid #TreatME #MillionsMissing

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Paula Knight

@Paula_JKnight

5 months

#DragonsDen didn't take place in a vacuum. It took place after decades of willful neglect to fund research into the disease, leaving no treatments, desperate patients' suffering, and poor public perception. ME is exploitable because of its neglect, and that's what the BBC did.

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Paula Knight

@Paula_JKnight

3 years

When I had my latest relapse I was at one of the most positive and confident points of my life with everything to look forward to. My book had just been published. The positive thinking mantra simply does not correlate. I find it toxic. #toxicpositivity #MECFS #MedTwitter

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Paula Knight

@Paula_JKnight

2 years

I wish I could go outside and feel the spring air on my skin. No idea if I'll ever be able to again because successive governments failed to fund research into my disease, choosing the cheaper option of psychologising it. #MyalgicEncephalomyelitis #MEcfs #pwME #grief #severeME

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Paula Knight

@Paula_JKnight

3 years

The idea that #pwme are 'militant' is risible when some of us can't feed ourselves. Is any other patient group called this for asking for equality of healthcare and the human right not to be harmed by 'treatments'? It's intended to silence. Not happening. #MEcfs @Telegraph #ME

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Paula Knight

@Paula_JKnight

2 years

Done some fairly adventurous things in my life - climbed massive trees, been behind the Iron Curtain, played music on live national radio, the big zip wire at the Eden Project! Strangely, I've never had a fear of everyday activities. Yet here I am bedridden 4 yrs. #MEcfs #pwME

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Paula Knight

@Paula_JKnight

2 months

We desperately need a protocol for hospital admissions/ 'hospital at home' for severe ME, and POTS. Too many people being mistreated/ disbelieved and conditions are not conducive to wellbeing. Hospitals should at least follow NICE guideline #SaveCarlasLife #ExposeMENow

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Paula Knight

@Paula_JKnight

6 months

This is my 6th NYE in bed. Nothing to plan or look forward to. Nothing of note from 2023 other than still being alive. Not really looking forward to another year of existence like this. I just feel numb and sad about it. #pwME #severeME #MyalgicEnceohalomyelitis

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Paula Knight

@Paula_JKnight

1 year

Complicit are the people laughing along, as were those who laughed along to the Gervais ME 'joke'. Not very original, and unnecessary ableism towards people losing their lives. A display of callous health privilege. Apologise #TheNewsQuiz @TheNewsQuiz

Robert Saunders (aka McMullen)

@RobertHMcMullen

1 year

“Let’s be honest, it’s never very hard to guess who’s going to get [Long Covid] is it? Know what I mean?” Comedian Simon Evans on BBC @TheNewsQuiz 2nd week in a row that The News Quiz has mocked people with #LongCovid . News Quiz should be mocking bigotry, not inciting it.

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Paula Knight

@Paula_JKnight

5 months

I'd like to see TV tackle the historic deliberate neglect to fund research into #MyalgicEncephalomyelitis and the tragic legacy of suffering that has left in its wake. Drama or documentary? Whatever brings a change in how we're treated. @ITV @BBCPanorama @Channel4 #ExposeMENow

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Paula Knight

@Paula_JKnight

2 months

What is it with chronic illness vs people ill for short periods and the care and concern the latter receive from others? It's disproportionate to suffering. People stop engaging with the former and the latter are treated with great care? Make it make sense #pwME #chronicillness

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Paula Knight

@Paula_JKnight

7 months

There might not be official treatments for ME yet, but we deserve compassion, respect and mitigation of insufferable symptoms and comorbidities. Hospitals and local health trusts need to listen to doctors with experience. Do No Harm shouldn't mean leaving people to die #pwME

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Paula Knight

@Paula_JKnight

2 years

Born on 30 April. I lived until I was 48 when my health gradually declined to bedridden semilife. That was 5yr ago. Last time I was able to do anything for my birthday was 2016 -Avebury (pic). I'd like a birthday TREATment for #ME #ResearchMEcfs #pwME #MEcfs #severeME #TreatME

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Paula Knight

@Paula_JKnight

2 years

Pls no more unhelpful replies such as 'ME is easily fixed' to posts by #pwME Not until it's actually true. That means every single pwME having access to effective treatments. We don't, so it's not. #MyalgicEncephalomyelitis #MyalgicE #MEcfs #chronicillness #healthEquality

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Paula Knight

@Paula_JKnight

9 months

Odd thing to say for someone who doesn't allow comments on his posts.

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Paula Knight

@Paula_JKnight

3 months

On #InternationalWomenDay 4 women are stuck in @NHSuk hospitals with very severe ME, not being treated adequately with their lives put at risk through there being no NHS protocol for severe ME. It's 2024. We deserve better. Please sign these petitions:

Sign the Petition

Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.

www.change.org

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Paula Knight

@Paula_JKnight

5 months

This article by @MrTopple gets to the crux of it all. Media should now be focusing on why we're in this situation in the first place, lived experiences, government and medical neglect, and why no NHS treatment pathways for us. #MyalgicEncephalomyelitis

Acu Seeds has devastated chronically ill people. Ofcom must now hold the BBC to account.

You cannot have missed the storm over the Acu Seeds product that appeared on Dragon's Den. Now, you can complain to Ofcom.

www.thecanary.co

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Paula Knight

@Paula_JKnight

3 months

I became in 93/ 94 after glandular fever. When I still wasn't better two years later my GP told me I was just unlucky. And that was that. Place the onus of the problem on the patient and leave them to it. It was ever thus. 30 years later and still no help. #pwME

Matt Lazell-Fairman

@mfairma

3 months

12 year old PWME, protesting in 1994. She would be 42 now. And still we have no treatments, no diagnostics, clinical care is abysmal, and patients struggle to get social and disability support. From the Summer 1994 #CFIDSChronicle . #MECFS #LongCOVID Alt text below

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Paula Knight

@Paula_JKnight

2 years

It takes a special kind of dogmatic cruelty to keep insisting that ME and LC are 'all in the mind' while attempting to silence the community by calling MH stigma. It's wholly damaging to obfuscate biomedical science. #myalgicencephalomyelitis #MEcfs #pwME #LongCovid #TreatME

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Paula Knight

@Paula_JKnight

3 years

The point is that there is NO safe or effective treatment for #MECFS yet because biomedical research has been woefully underfunded. That doesn't mean we should stick to treatments that we know harm people!! There is no logic to pausing for this reason #NICEguidelines #ME

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Paula Knight

@Paula_JKnight

7 months

2000 days bedridden. Poem as well. Not the best I've ever written but does what it says on the tin (see below). #Myalgicencephalomyelitis #pwME #Poem #poetry #MEcfs #DisabledWriters

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Paula Knight

@Paula_JKnight

2 years

Anyone house- or bed-bound could never have taken part in the PACE Trial. So there's no evidence whatsoever that it's efficacious for us. I wonder why severe patients were excluded - because they knew it couldn't work and maybe potential harm? #severeME #PACEtrial #pwME #MEcfs

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Paula Knight

@Paula_JKnight

2 years

Everyone used to do something before #ME or #LongCovid wrecked lives. But you'd think it was mainly a shocking shame for those who did sport/ fitness things. It is, but other losses are also a shocking shame and equally valid. #pwME #MEcfs

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Paula Knight

@Paula_JKnight

1 year

For 15+ years before I was diagnosed with POTS, I couldn't tolerate caffeine or alcohol. If I'd been out, I thought the reason I couldn't sleep and had fast HR was from sensory overload or over excitement! It would take until 3 or 4 a.m. to get to sleep. #Vasodilators #POTS

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Paula Knight

@Paula_JKnight

1 year

📢 #DontletMEdie protest: There's no cure for #mecfs but we deserve med professionals to at least be educated in our disease, take advice with good grace from experts who know better, and do their utmost to save our lives when very severe/ hospitalised unable to eat. @DHSCgovuk

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Paula Knight

@Paula_JKnight

2 years

I watched the moon landing and have lived through amazing scientific and tech changes. But in all that time we've failed to solve post-infectious chronic illness. That's because this world is disdainful towards those who stay ill. We are inconvenient #meawarenesshour #MEcfs

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Paula Knight

@Paula_JKnight

2 years

ME fam. Thank you for being here. That is all 💙

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Paula Knight

@Paula_JKnight

2 years

As a writer with v severe ME, I can't do deadlines. Otherwise I'd pitch to the G again. Therein lies problem with overall representation in the media of this disease. It's skewed unless folks write about others. Who gets to tell their story? #MEcfs #ME #MyalgicEncephalomyelitis

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Paula Knight

@Paula_JKnight

7 months

Drs, if somebody has ME you can guarantee that they are not 'otherwise healthy'. It's a multisystemic disease so that is kinda impossible. #MedEd #myalgicEncephalomyelitis #MedTwitter #pwME

Jo

@cfs_jo

7 months

Out of hours Dr: Other than ME and POTS is your health generally good? Me:

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Paula Knight

@Paula_JKnight

2 months

Situations like Millies and Carla's make me terrified of the thought of being admitted to hospital. Until things change, I avoid going. Already I don't have equal access to NHS healthcare by being bedridden. #SaveCarlasLife #ExposeMENow #pwME

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Paula Knight

@Paula_JKnight

3 years

#ProtestNICE4ME #GETharms @NICEComms Publish the guideline without further delay Rescind 2007 guideline immediately to prevent further harms from graded exercise therapy (GET) Not bow to pressures from the royal colleges to keep treatments that have harmed and disabled #pwME

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Paula Knight

@Paula_JKnight

3 years

The media think they're providing balance by rolling out so-called ME experts, who happen to be psychiatrists and whom nobody has heard of, but this is spreading harmful misinformation. Would they use climate change deniers as experts? #MECFS #stoptheharm #pwME #journalism

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Paula Knight

@Paula_JKnight

2 months

@MEAssociation @itvnews But brain fog is not caused by not using the brain, it's caused by the pathophysiology of the disease. I can't believe £335,000 is being spent on this 'research'. That so much money was spent on this makes me lose hope. What a waste.

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Paula Knight

@Paula_JKnight

2 years

ME Awareness Day #30 , yet here we all are. I don't know how to make the right people fund biomedical research - I'm just just trying to survive having been bedridden for 4 years. It shouldn't be my job. #MEAwarenessDay2022 @sajidjavid @karinsmyth #MEcfs #ME

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Paula Knight

@Paula_JKnight

5 months

We need ME-trained palliative care. We need care funded by NHS CHC. At the moment we just have to get through the worst times with no medical help to alleviate the suffering. It's a cruel neglect. Is it any wonder that people take this route? #MyalgicEncephalomyelitis

Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

5 months

Hopefully one day people with severe #MyalgicEncephalomyelitis won't have to choose death to end their suffering because there will be effective treatments and knowledgeable clinicians to look after them, just as there are for other diseases. #MyalgicEncephalomyelitis #MECFS

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Paula Knight

@Paula_JKnight

2 years

Being bedridden, disabled & chronically ill, social media is the only way I can feel community and connection to the world outside my room. A medical paper posted here possibly saved my life last year! Staying. (Will explain later.) #DisabilityTwitter #pwME #NEISvoid #MEcfs #ME

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Paula Knight

@Paula_JKnight

1 year

Trying to keep myself alive with this disease is too precarious. I want someone else to take charge and tell me what to take and if I'm doing anything wrong. How am I supposed to know? Still not back to pre autumn baseline (v severe then) #mecfs #pwME #MyalgicEncephalomyelitis

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Paula Knight

@Paula_JKnight

2 years

At 48, my career was at a turning point and my 50s were meant to be spent pursuing this and exploring new opportunities. Then health deteriorated and #MyalgicEncephalomyelitis Life can be axed by #severeME at any age. Older, the less likely help in our lifetimes #pwME #MEcfs

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178

Paula Knight

@Paula_JKnight

3 months

"There is a psychological intervention that could improve the lives of people with ME/CFS: an apology and recognition of the harms they have suffered." Thanks @GeorgeMonbiot for indictment of psychosocial approach to ME today. #MyalgicEncephalomyelitis

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal |...

The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot

www.theguardian.com

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48

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Paula Knight

@Paula_JKnight

2 years

Snowman in a bowl. When snow and being bedridden meet. #snow #snowman #chronicillness #MyalgicEncephalomyelitis #pwME #MEcfs Thanks @Naomi_D_Harvey for idea. It was really nice to feel the snow.

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Paula Knight

@Paula_JKnight

9 months

Wonder if there's a job tasting food spooned into my mouth by husband-unpaid carer? Hope so. #pwME #SevereME #MyalgicEncephalomyelitis

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31

173

Paula Knight

@Paula_JKnight

6 months

I might not always say something new or groundbreakingly useful about ME here. However, I only have two people I speak to in-person, and I'm unable to speak much at all. Posting is just communication, which I have very little of, and it's good for my well-being (mostly). #pwME

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Paula Knight

@Paula_JKnight

2 months

This is horrendous. How can they not learn from mistakes that have ended up in people dying? They are completely ignoring the NICE guideline. The fact is there are no protocols in place for people with very severe ME and hospital admission. We need this. #MedTwitter #pwME

Etta Loveday

@EttaLovedayME

2 months

Latest update from yesterday (4/04/24) Petition Fundraiser #MilliesevereME #verysevereME #pwME #saveMillie

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Paula Knight

@Paula_JKnight

1 month

If I die, nobody will be able to say that I hid the fact that I had ME. I don't care whether it ruins an image of productivity or not. Some of us have nothing left to lose and staying quiet about it helps no one #pwME #MEAwarenessWeek

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Paula Knight

@Paula_JKnight

2 years

I don't think I've ever felt erasure as much as I do right now - the pandemic had a lot to do with that, amongst all the other BS of being chronically ill and living in one room year after year, and having illness that has been neglected #DisabilityTwitter #chronicillness #pwME

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Paula Knight

@Paula_JKnight

3 years

When the NICE guideline is published, I hope doctors/GPs will realise that exercise has been bad advice and making #MEcfs patients worse. I worry that they will be on the defensive. I hope they will act with grace and respect #medtwitter #meded #MyalgicEncephalomyelitis #pwme

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Paula Knight

@Paula_JKnight

2 years

Two people have messaged to say that BBC morning live TV programme will be discussing why people with ME have been ignored for so long. Does anyone know who the doctor on the programme is? Let's watch and tweet #pwME #MyalgicEncephalomyelitis #MECFS #ME #bbcmorninglive

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22

166

Paula Knight

@Paula_JKnight

1 year

Husband is now having to help with messaging and social media so I might not be here much. Struggling to use phone unless I'm lying down flat on my side and even then I probably shouldn't be trying. Stressful Christmas has impacted ongoing PEM.

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Paula Knight

@Paula_JKnight

8 months

I'm really lucky to have a view from my room here, but as time goes on I'm finding it harder and harder to live in bed. Feeling especially hemmed in for some reason at the moment. Haven't seen family for years, and there's too much loss. #pwME #myalgicEnceohalomyelituis

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Paula Knight

@Paula_JKnight

1 year

Recently got a Garmin watch, and discovered that when lying on my left side I'm never in 'rest', including when asleep. And 'body battery' only charged 5%. The change from orange to blue is when I woke up and was turned onto my left side. Leftside sleeping it is, then. #pwME

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Paula Knight

@Paula_JKnight

2 years

Don't know whether I should be using the last scraps of energy I have, in what are likely the last years of my life, to fight tooth and nail for my life. This is the dystopian mobius strip that people with very/ severe #ME find themselves in. #severeME #MEcfs #MedTwitter

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