Tracey Burgess
@TraceyABurgess
Followers
2,845
Following
3,373
Media
936
Statuses
61,851
Mum to a trans daughter 🏳️⚧️ who loves the natural world.🌿Degrees in Hist/Phil & Counselling/Psychotherapy. Unwell since 2007, worse 2016/17. Improved.🌼
Ireland
Joined January 2021
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Pinned Tweet
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@RuhoyMD
'I knew something was not right.'
When someone's lived in a body for any length of time, they know when it's not working. I find it deeply insulting, dangerous and neglectful, for others to refuse to believe me.
I'm so sorry, that you had such a horrendous experience.
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Wearing my FFP2 mask into my homecare client's house earlier this afternoon, another homecare worker was already there having a cup of coffee, (no mask on) dropping off the meds from the pharmacy. They called me Duck Face. I am not happy!😠
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Wearing my FFP2 mask 😷 to my clients & when I'm in the shops is affecting my mental health due to other people's response to me. I will obviously still wear it, I'm not uninformed & I'm fairly resilient but public health is failing catastrophically & I can see the path we're on.
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Y'all masking 😷
Tracey the rural homecare worker! 🐴
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@AHinkle628
When I went into hospital for a procedure, needing a general anaesthetic, I took my very expensive looking scarf and nice coat, on purpose. I wanted them to believe I had a certain amount of power. I saw the bossy nurse notice them and she changed her attitude and was nicer.
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Something that I often wonder about is: how many people are there, who have made improvements in their ME/CFS & LC symptoms but who are wary of saying anything for fear of a negative reaction from others?
I seem to have made progress but I don't know how I can safely share this.
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I think the CBT/GET crowd have done so much damage in so many ways. One of them, I think, is that pwME, Long Covid or other post infectious onset, or with other onset chronic illnesses have to be very wary of openly discussing any mental health they may be experiencing. Not good.
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I have just talked to my supervisor and she is going to discuss this with the state homecare department.
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"Medical gaslighting" is an informal term sometimes used to describe when a medical professional does not know how to resolve a patient's condition or want to get involved in a complex situation and downplays a patient's concerns about their health or tries to persuade them...
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I'm not the same person I was in 2019.
Anyone else?
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It's the pitiful look that gets to me. And sometimes the outright sneer. It's taking chunks off me.
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'...the clinical trials group apparently didn’t know about the disease’s signature symptom – postexertional malaise – and has been forced to go back to the drawing board for the exercise trial.'
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I wanted to send out some love and solidarity to everyone suffering with ME and Long Covid. I am finding the
@NICEComms
fiasco increasingly wearing and I wanted to join with others in a sort of vigil - supporting each other in this interminable void. 💕🌿🌼💖🌻🌈💙🌸
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I've made it to 62! 🥳 Yay! 🎉
Over the last 15 years, there have been countless times, that I genuinely thought I might die 👀 Anyway somehow & so far.... I'm still here 😁 Sending my love and best wishes to everyone. 🌼🌿
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I'm currently upset, as I've just realised that the GP has most likely decided that I have functional neurological disorder (FND). I couldn't work out why they said "...you're very healthy" when I'd explained earlier all the brain issues I have had?
So, I have hysteria?!
With fewer than 1/3 of medical school curriculums currently addressing ME/CFS and less than 1/2 of medical textbooks containing information about the disease, it’s undeniable that ME/CFS has slipped through the cracks of our modern medical system. This needs to change in order
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We may not know what makes people with ME *better* but we DO know what makes ME *worse*.
Graded Exercise Therapy (GET) makes people with ME much worse.
ME has absolutely nothing to do with deconditioning or false illness beliefs.
Healthcare workers need to understand this.
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@1goodtern
I try & explain the situation to my family but they think I'm overly anxious & have lost the plot. Nothing new there then. But in the years to come, I really don't want to be right & it'll be too late then. 🤯
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Don't forget that ME/CFS was ONLY ever a psychologically rooted illness, INSIDE the individual & collective MINDS of psychiatrists & psychologists.
It does NOT exist in this form in reality & never has.
These false beliefs were then FED to & ADOPTED by the medical profession.
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@mominmedicine
My teenager's best teacher (in our opinion) at secondary school said to them, that she didn't think she was the necessarily the brightest but she worked the hardest.
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These trials are apparently expected to last for FOUR years. That
@NIH
are looking into exercise, as a 'treatment' for people with Long Covid continues to legitimize exercise (where this may be contra-indicated) possibly causing immense damage to some.
.
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I think it's worth remembering just how toxic the atmosphere was towards people with ME, in the summer of 2021, before Maeve died.
NICE executives pandering to the medical establishment by *pausing* the publication of the revised guidelines on ME. Pathetic.
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@ABrokenBattery
Great find Adam. I suspect that when people find out how their governments have lied to them, about the possible long term consequences of Covid, they will be very angry; especially in relation to their children. There's plenty of evidence of harm, if you know where to look.
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Fair warning: mentioning personal improvements in ongoing symptoms after viruses.
A few people asked me what I'd done to improve & I'm happy to chat about this in a conversational sort of a way, if anyone's interested?
These ideas are related to me & I'm not suggesting a cure.
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@DrGrounds
I'm so sorry to hear of your experience Marie-Claire. You and your colleagues have been so badly let down - it's such a tragedy and could have been avoided. I hope you have some support and are receiving help with your symptoms. 💗
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I just sent a short email (highlighting ME and Long Covid) to the production company Little Gem, who with ITV put together the four part TV series, Mr Bates and The Post Office.
Their email address is:
info
@littlegem
.tv
🙂
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@DeansKevin
@DoctorsWithME
So glad I came across your tweet, it's cheered me up no end! Good for you, that's what most patients with ME/CFS are looking for - someone who wants 'to understand enough about their condition to be able to give them the best care I can.' Brilliant.
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New profile pic, in case anyone gets confused 😊 Took the last one two years ago. I'm fatter than I was (a lot!) but I can eat a wider range of food, with less consequences & am managing a good bit better now. Sort of... 🤞
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that their symptoms are imaginary. Medical gaslighting is an exploitation of trust.'
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#SaveCarlasLife
When a hospital is caught up in the denial of reality, systemically failing and actively neglecting and harming a patient, where do you turn to?
Carla. April 24th 2024. London. UK.
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#DontLetMEDie
Anyone else ready to spontaneously combust with anger? 💥😠
I am so fed up with sick, vulnerable people, being treated with such a lack of care & respect by health & social 'care', due to ignorance (in all meanings of that word).
Treat ME Patients properly. 💙
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@Dan_Wyke
I remember in the 1970's hearing someone say that horses should not be exercised when they have a virus because they may not get over it. Similarly, nowdays I've seen vets say the same thing online. Maybe we should go and see a vet.
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😷 "Tracey's got her nosebag on" said to me recently, in a house of people after a funeral. I am lost for words...
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I've wrecked my phone, by dropping it twice. Once wasn't enough! New phone on the way. I can only see parts of the screen & all words can be doubled up :(
On a happier note, I have beautiful new dog cslled Hailey. So absolute chaos!
Hailey relaxing ⬇️
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@exceedhergrasp1
@EmLyWill
@NIH
So, re-packaging something that everyone has at their disposal (exercise) as a healthcare commodity & selling it back to patients, as an intervention studied in an expensive NIH funded trial. Over hyped & over packaged with modest gains for some & risk of immense harm in others.
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@JanetDafoe
Gaslighting is a form of psychological manipulation. ME/CFS patients have routinely had their experience twisted around by countless people, with the full support of a small but powerful group of psychiatrists/psychologists - for decades.
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Controversial topic: improvement.
As I've written about before, I have seemingly made significant improvements. However this is a fairly lonely place to be. Some people can be highly sceptical (okay I get that) and some are poised to strike (I get that too) but it's not helpful.
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Thinking of
@swastrosarah
on the eve of Maeve's two week long inquest. 💔 We are going to find out the sheer level of pain, suffering and trauma endured, in isolation, by Maeve and her mother and carer, Sarah.
Maeve was a bright, beautiful & highly intelligent young woman. ❤️
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Rosscarbery, West Cork, Ireland. 🇮🇪
I love this view 😊 On my way to homecare client and just had to veer off, in the wrong direction, to take this. Sorry for the wobbliness. Sea in the distance. Little bird chirping too 🎶
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Anyone unwisely thinking they'll conquer ME/Long Covid (if they get it it) will experience an enormous shock & a deterioration in their health, if they try to *push through* their symptoms. Exertion makes ME worse.
And *exertion* can mean going to the toilet, having a shower...
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#BringMillieHome
#DontLetMEDie
So, not only does Millie & her family have to deal with rogue doctors & psychiatrists but now a physiotherapist has joined in.
Not UK *health professionals* finest hour. 🤦♀️
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@DellaLuna
@CDCgov
So sorry. That's a nightmare. I am a part time home careworker. Caregivers definitely need wear masks at all times. I bought my own FFP2 masks and I believe my agency is now giving them to all caregivers, like myself. I need to go to the office to collect them. I'm in Ireland 🇮🇪
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On
#SevereMEDay
8th August 2023, I am wondering who are those with Severe ME 💙 and where are they?
I can immediately think of many people but there will be many more, around the world, that we don't hear from. 🌏🌎🌍
Maybe they, or their carers, could let us know? 💕
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Diary of a homecare worker 😷
Part One: I wear my FFP2 Duck face mask with my clients, in the shops, in the petrol/gas station etc. It's not very difficult. But other homecare workers do not wear their masks. I'm seen as a bit of a party pooper but that's okay, I'm used to it.
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@TomKindlon
I think the CBT/GET crowd have the treatment of ME/CFS patients the wrong way around. If someone spent time listening to the chat amongst pwME, they'd discover that they all want to do MORE than they can and they need psychological support to ACCEPT they're ill and to DO LESS.
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@UnwantedGuest3
Spectacular piece of writing. I am so relieved to read that you're experiencing a bit of improvement. This is a mass traumatising experience, that people are going through in isolation. To be that sick and no one recognise what is going on, or how to help, is truly terrifying. 💕
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I'm so fed up of the fighting. Let's discuss instead. As someone who has had post acute, infectious onset, complex chronic illness for sixteen years with no help or support & no diagnososis etc., etc., David Putrino PhD is one of the people who gives me hope for the future.
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@BinitaKane
Does Dr Musgrave have any family or friends who can help her respond more intelligently to a virus that's leading to a massive number of deaths and disability worldwide? Dr Musgrave's open & dismissive challenge of a well known expert seems to me, to be very self destructive.
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@OpenMedF
ME/CFS patients have frequently been on the receiving end of poor quality medical care - based on poor quality research and now we have poor quality physician governance from NICE. ME/CFS patients deserve a far higher standard of care and protection than this - and they know it.
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@cfs_jo
Another of my client's said that some of the other carers don't wear masks either. What are they thinking? She often says , 'You never have a cup of tea here?' And I answer 'You're so kind thanks but I need to keep my mask on...'
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@1goodtern
I reckon you make a big difference tern. I see your tweets & am familiar with your caring & responsible messages. They're a support to me & undoubtedly many others in keeping going with the protections from Covid, that others now see as something irrelevant from the past. 😷
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I've recently gone back to see my GP, after years of not attending (repeat presc for asthma) to address some new health issues. Having an internal dialogue in relation to being severely traumatised by years of gaslighting. How do I handle the years of medical neglect? Hmmm....🤔
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@davidtuller1
@VirusesImmunity
Excellent interview. It's so refreshing so see someone who's genuinely interested, is so respectful towards patient's lived experience and is so knowledgeable. Gives me hope for the future. Thank you David & Prof. Iwasaki.
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@haziethompson
I think it's very difficult to assess someone elses's position, if you don't fully understand what's going on for them.
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@brownecfm
I wear my FFP2 mask everywhere there's other people indoors. I'm just about the only one now. I seem to be regarded as overly anxious & a bit odd etc. I honestly don't really care that much but sometimes it does get to me. The smirky looks are the worst.
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Masks 😷
I went shopping yesterday & as far as I could see, I was the only one in a mask (FFP2). Usually there's one or two others.
I also wear a mask to work with my vulnerable clients as a homecare worker. I will continue to do so.
Just tweeting in support of other maskers👋
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Bank Holiday. Between the Spring showers. West Cork, Ireland. 🇮🇪
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There's something really sinister going on in the medical profession & it seems as though it's being supported & NOT challenged by social workers. This is pure abuse. Psychological and physical abuse. This cannot be allowed to continue.
Finally, we spoke for an hour today with the father of a young woman called Carla: currently living with
#SevereME
that an NHS hospital is ignoring. She is extremely unwell repeatedly losing consciousness, unable to eat, yet the hospital is refusing to follow
#MEAwarenessHour
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@SabineHermisson
Mila's existence day after day, night after night, is beyond most people's comprehension. It's so important that others get a glimpse of the full extent of very severe ME/CFS. 💔
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"An alternative – parenteral feeding through a vein – was rejected because it would have been unsafe in her case."
So instead, Maeve starved to death, which does seem to be another very *unsafe* alternative to me.
I'm speechless and internally raging.
The Guardian: Not a single bed set aside to treat ME in any UK hospital, says NHS director - Father of Maeve Boothby O’Neill, who died in 2021, says it is ‘shameful’ that health system is unable to treat the disease
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#BringMillieHome
Steve & Nicola are in Lancaster! They are with Millie's family & are going up to the hospital now!
URGENT
#BringMillieHome
#DontLetMEDie
We are in Lancaster at the request of Millie's family, Lucy and Abbie. We spent a few hours with them last night and they are amazing people. Why are we here? Watch below and sorry there's no captions 😔
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*Important press release by COVID-19 Airborne Transmission Alliance (CATA)
Next week public hearings commence for Module 3 of the COVID-19 Inquiry
➡️focus on the experience of healthcare during the pandemic
Will it be a reckoning for those responsible for the deaths/disability?
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Dave's being a pain again. I've muted & blocked him, as I don't like his attitude towards others in the community. He has many accounts & will just create new ones. And I'll keep muting & blocking him...
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#ExposeMENow
Need a bit of a break? Resting is vital, if someone has ME. 💙
Copper Acer & Bluebells. West Cork, Ireland. 🇮🇪
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@LiqaDr
@TrainUs4Ireland
@DeptJusticeIRL
@DonnellyStephen
@HMcEntee
@CathyReilly
@neasapress
@med_indonews
This is ridiculous. The Health Service is so poorly managed & it's just getting worse.
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#BringMillieHome
Millie has been placed under another Dols (Deprivation of liberty safeguarding).
They don't seem to realise that it's the hospital itself, that Millie needs protection from. The hospital environment & lack of appropriate care is causing Millie harm.
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@PutrinoLab
@julierehmeyer
(sp)
& having worked in so called, 'caring professions', I found out the hard way that there's inevitably a fork in the road. Do you choose to support the client/patient & focus on their care, or do you toe the line, keep quiet & focus on your career progression?
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@davidtuller1
I am so sorry Sarah. 💞 Maeve's nightmarish experience is sickening. Reading David's account is both heartbreaking and enraging and I'm speechless, at the sheer arrogance and ignorance of some of the doctors involved in her blatant lack of care.
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An irresponsible decision.
RTE news : Facemasks no longer mandatory in healthcare settings
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@GeorgeMonbiot
@NICEComms
Thanks George. It's pretty poor isn't it? I think it reveals a lot. Do they not realise how ridiculous they look. Many people with ME/CFS are unfortunately horribly familiar with the dark and dingy back alleys of healthcare. But now the corruption and dysfunction is in the open.
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People who are currently not wearing an appropriate mask when indoors with others in shops, healthcare settings etc & think Covid is over (because their Government told them it's over) are leaving themselves so vulnerable. They probably think there's help & support available. 😳
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What the GET/CBT pushers have done for years, is a repulsive abuse of their power & privilege. Most of us know that. But you may not know what I know, about the level of corruption that runs along the underbelly of Counselling & Psychotherapy. Challenge it & you're on your own.
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Going to my GP this morning. I haven't been in to see them for two & half years. I'm just going to go & see what happens. Check out the lay of the land so to speak. Will mention heart & brain & energy irregularities. And of course food. That'll be a start...
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@sliccardo
Janet, Ron and their son Whitney, who is very unwell with ME, are great advocates for finding effective treatments for ME. Ron consistently works very hard to try and figure out ways to help ME patients with his ongoing research. Despite his expertise
@NIH
does not support him $
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I cannot believe I've missed this ⬇️😱 Lee would have walked along the coast near where I live. He's walking for his brother Josh, who had ME & died last year & to raise money for
@IrishMECFSAssoc
&
@actionforme
Article in the Southern Star newspaper on Lee Colligan's mammoth walk in memory of his late brother, Josh, in aid of us & Action for ME
#MyalgicEncephalomyelitis
#MEcfs
#CFS
#PwME
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#Millie
I do hope the perpetrators of Millie's abuse are brought to account for their actions. They may not like social media but I don't like witnessing ignorant, arrogant bullies torturing an extremely unwell teenager. Is there no discipline in Lancashire hospitals?
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@TimesONeill
@guardian
Keeping a patient alive by providing appropriate nutrition & hydration seems to be an obvious priority, until you find someone who is 'familiar' with the condition.'
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Afternoon, winter sunshine. ⛅️ West Cork, Ireland. 🇮🇪
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I think Louise makes a vital point here. Millie has a diagnosis of Myalgic Encephalomyelitis (ME) from a UK specialist, Dr William Weir, who travelled to the hospital in Lancaster to assess her.
@TheChronicColab
@ABrokenBattery
Vital that news reports state Millie has a diagnosis of ME, that ME is a physical disease, classified as a physical disease by the WHO, NIH, CDC+UK NICE. +The hospital kept Millie under a Deprivation of Liberty statement due to Drs wrongly interpreting her symptoms as psychiatric
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#SaveCarlaLife
#ExposeMENow
Apparently a nurse, involved in Carla's neglectful 'care', has made a complaint about Carla's mother Caroline. The complaints process, I assume, will be looking for Caroline's response.
@TheChronicColab
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The slip at the cove. Bantry Bay, West Cork, Ireland. 🇮🇪
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#Millie
"As with previous examples of medical dogma, the belief that ME/CFS is “psychological” will eventually be consigned to the dustbin of medical history, alongside miasma theory and suchlike."
@EttaLovedayME
@childminderabi1
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@Healthy_Control
@ABrokenBattery
@RCPhysicians
I think Professor Edwards letter to Andrew Goddard is measured and thoughtful and seems to me to be reflecting what many people in the ME/CFS community are saying.
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Please report this account, if you see them post anywhere. They're really nasty & they're posting vicious, sexually threatening replies. If we all block the account, then they have no platform. I'm going to block them now.
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@cstroeckw
💯 In the beginning, I thought doctors would help to find out what was wrong with me. But tests & visits to consultants didn't show anything, so therefore they decided I had psych issues. My condition worsened - I had bact & viral infects. My 🧠 & energy were severely affected.
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I've heard two interviewers ask "What do people with ME want/really want?"
They are Krishnan Guru-Murthy
@krishgm
and
Matthew Wright
@Matthew_Wright
Have they looked at the history of ME? A good place to start would be the excellent Dialogues series.
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@Dan_Wyke
I would have thought the roundtable meeting is invalid and that NICE are conducting themselves outside of their own procedures and that they need to be brought to account. I believe that it's so important that NICE are made to stick to their own processes - they're out of control
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@TheChronicColab
Just cover the door window!
Respect the very simple wish of you patient NHS.
This is ridiculous!
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@keithgeraghty
@NICEComms
Thanks Keith. I think the whole NICE debacle has opened up such a can of worms, which has been picked over by yourself, Brian Hughes and David Tuller. I have been left speechless on occasion, by the sheer absurdity of what I was reading. It's quite a lot to get your head around.
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@aurorakangaspuu
@kprather88
@Annalisa840917
@WHO
For example, no mention of masks, good ventilation or air filtration...
Respiratory viruses are on the rise across the United States. Take preventive actions to stop the spread of viruses like flu, RSV, and
#COVID19
:
🩹Get an updated COVID-19 vaccine & get your annual flu vaccine
🏠Stay home if you are sick
🧼Practice good hand hygiene
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@swastrosarah
Maeve was so clear and articulate. ❤️✨️
The absolute worst kind of nightmare, to have your fragile physical health be so fatally damaged by the mental health hierarchy, who push the neglect & abuse of ME patients, with government backing & sponsorship. So cruel.
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