Katy B
@KatyBruce108
Followers
5K
Following
195K
Media
327
Statuses
38K
Myalgic Encephalomyelitis ME + POTS 38 years Donor to the @mecfsbiobank for 10 years & @DecodeMEstudy Please watch https://t.co/rPfzhZQ6po #pwME
Joined January 2013
BPS proponents & FND fanatics take note, .as @PutrinoLab says "We have a new generation of scientific weapons to wield against the misinformation & abject cruelty you've used to harm these communities for so long & we will not let this stand" . #MEcfs #LongCovid #MedTwitter
9
72
191
A dear friend of ours died from #Covid this week. He such an incredible man & a wonderful artist, .this piece of stained glass which he made is called 'Mandala of Life'.Please take great care, Covid is not over & every single loss is grieved 💔. 😷
56
178
1K
No patient group could have tried harder to recover than people who've been diagnosed with #ME .To say otherwise is deeply hurtful & insulting. We really need good science & support in order to recover not pseudoscience. #pwME.#MEAwarenesshour.
7
95
447
I've had ME for 37 years .I assumed there would be biomedical research leading to treatments & cures .It never happened .Seeing younger generations being diagnosed with ME is absolutely heartbreaking & infuriating .It could have been avoided.& to all of you I'm so so sorry💔.
27
70
418
Today I've heard of 2 recent cases of young women in the UK with #verysevereME who've died of starvation after the hospitals who's care they were under refused to recognise their needs as #pwME & to give them the care they desperately needed. This has to stop .@NICEComms.
14
141
410
I've had ME for 36 years most days the symptoms are frighteningly extreme & after all these years nothing has changed there's no treatment for #pwME & most Drs & HCPs are so misinformed about ME it's best to avoid them.This should never have happened to any of us.#MEAwarenessHour.
19
77
374
One of the hardest things about having ME is being so limited in what we're able to do for others when they're having a very tough time & they really need our care & support & we're far too ill to be able to be there for them . #MEcfs steals so much from us 💔 .#meawarenesshour.
13
52
379
It's 35 years since I first became ill with #ME & I never recovered .Everything I'd hoped for, finishing my degree, having children, a career & more, all lost. I'm just 1 of 100's of thousands of #pwME who lives have been ruined by #ME .#MEAwarenesshour.
33
76
356
'Sign this petition to help try to save Alice Barrett's life. She's 25 & has #VerySevereME. She's currently in Royal Devon & Exeter NHS Foundation Trust hospital. They are refusing to adapt their NG tube feeding policy for her requirements'.#MECFS .#pwME.
24
258
344
For parents with ME .As the daughter of a parent with v long term ME .I promise you that love from a parent is everything .That what a child feels & trusts & knows is the deepest truth of their relationship with their parent can & does mitigate any potential trauma.Hold onto that.
21
34
332
“This was not a case of a local hospital being unable to treat a patient with a particular and unusual illness,” he said. “This is a nationwide failure to help ME sufferers. This is the very definition of a major systemic failing". #MEcfs #MedTwitter .
9
113
314
I live in central London but it's taken me 10 months to find a new GP who:. Accepts ME is a biological illness .Agrees there's no treatment for ME.Will follow the @NICEComms guidelines .Does🏡visits . We urgently need all GPs to be reeducated about #MEcfs. #MEAwarenessHour.
12
49
295
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.
26
47
299
@ITV @Suej1959 A programme about this must be made, the scandal & injustice is ongoing & it has destroyed the lives of countless of people in the UK. Here's one tragic case
Hopefully one day people with ME/CFS will have their #PostOfficeScandal moment. #pwME #MECFS #MyalgicEncephalomyelitis #horizonscandal #C4News #r4today.#MedTwitter #BBCBreakfast #bbcnews #NHS
2
30
294
Thinking especially of everyone with severe & very severe M.E. who lives alone. It can feel particularly tough at this time of year. Sending love & support to you all. 💙❄️💙. #MEcfs .#LongCovid.
13
42
276
Thinking of all the #pwME #MEcfs & #LongCovid who are stuck in their homes & their beds, in darkened rooms while the sun shines outside, feeling alone & cut off from the world. Sending love & strength to you all 💙.
16
37
276
Sean O'Neill's powerful statement mentions the terrible impact which Simon Wessley's influence has had on how #ME is perceived & understood . #MaeveInquest.
6
76
274
@ITV @Suej1959 A programme about this must be made, the scandal & injustice is ongoing & it has destroyed the lives of countless of people in the UK. Here's one tragic case..
Hopefully one day people with ME/CFS will have their #PostOfficeScandal moment. #pwME #MECFS #MyalgicEncephalomyelitis #horizonscandal #C4News #r4today.#MedTwitter #BBCBreakfast #bbcnews #NHS
1
24
275
'ME cruelly killed my daughter - the @BBCDragonsDen scandal is a disgrace' .So grateful to Clare Norton & @iEllieFry for this article, it really could not be more important & it needs to be read by everyone. #ME #MEcfs #MedTwitter #pwME #LongCovid .
8
95
266
Thinking of #pwME #MEcfs & #LongCovid stuck in bed, everyone doing their very best to stay connected, raise awareness, advocate & do anything they possibly can to change the situation we're all in .💙🫂💙. Image, Chiharu Shiota
11
62
269
It's just been confirmed that the report on #ME #MEcfs will be on @Channel4News this evening. It features Clare Norton, Mother of Merryn Crofts who died from very severe ME in 2017 aged 21. #pwME #MEKills #MedTwitter.
6
103
258
Coroner ruled that the 32yr old had died of complications due to ME, a landmark verdict in the🇬🇧 .Sophia Mirza’s spinal cord was inflamed with 3 1/4s of her sensory cells displaying significant abnormalities . #MEcfs .#pwME .#MEKills.#MedTwitter .
9
89
257
"BBC pull Dragons' Den episode after 'serious' concerns over 'ear seeds' .BBC have yanked Dragons' Den from iPlayer after concerns were raised after a guest showcased 'ear seeds' which allegedly helped 'cure' her ME".Thanks to all who demanded this.#pwME .
10
52
243
It could not be clearer to anyone witnessing #MaeveInquest that Sarah & Sean couldn't possibly have done more for Maeve. They were faced with terrible, insurmountable barriers, & every one of those barriers now urgently needs to be dismantled as a result of the inquest.
3
60
236
#MedTwitter . From @NICEComms guidelines for ME ."Recognise that people with #MEcfs may have experienced prejudice & disbelief & could feel stigmatised by people (including family friends health & social care professionals & teachers) who do not understand their illness."
8
56
229
Anyone with #ME can become severely affected at any time, the progression from mild to severe & very severe can happen rapidly with no way to halt it & once severe, there is no medical support at all, we're just left, often for many decades. #MEcfs #pwME #LongCovid.
4
67
235
When you have M.E for your whole adult life, being denied a life with real purpose, the ability to spend your time here doing something with real meaning & value & to be a part of the world is one of the hardest things to come to terms with.& it didnt have to be this way . #MEcfs.
11
33
224
'Prior to having ME I didnt believe in it as a real physical condition & was shocked as to how misinformed the medical profession are & how widely #MEcfs is misdiagnosed under recognised & underestimated by HCPs' Dr Nina Muirhead .#MedTwitter #MedEd .1/2.
11
78
215
"The initial finding suggests that the protein profile in cerebrospinal fluid from M.E. patients differs from controls & is similar to that in #LongCovid" Dr Bo Bertilson . #MEcfs #pwME #MedTwitter . Can't think or exercise your way out of that.
7
69
220
I dont say this often enough but I'm grateful to the ME online community & #pwME every single day.This is a group of extraordinarily brave loyal resilient smart compassionate people who do so much to support each other in the face of such extreme suffering .🙏 .#MEAwarenessHour.
10
61
230
Given that yet another #pwME was threatened with sectioning by their GP this week during a crash, .perhaps the ME orgs would consider including information on their websites for what specific actions to take if that happens. @MEAssociation @actionforme @MEActNetUK @DoctorsWithME.
14
51
212
If anyone is contacted by the @ITV commissioning team re making a programme about M.E, please could you let me or @JennyWi04810918 know, we have Dr William Weir onboard & he'd like to speak to them . #MEcfs #pwME.
6
77
211
‘We are not done with Covid, not even close’ - @VirusesImmunity ."I always have in the back of my mind how can these insights from #LongCovid help people with #MEcfs & other post-acute phases of infections, like post Lyme disease?". #MedTwitter #MedEd .
3
64
195
"Parents accused of faking their children's #LongCovid" @thetimes ."It's the default belief if we can't explain it, it must be psychological. it's absolutely shocking"- @BinitaKane ."LongCovid is going the same way as #ME"-Dr Nigel Speight . #pwME #MEcfs #FND #MedTwitter
15
87
214
Thinking of everyone who's feeling the loss of another summer, while we've been stuck in our beds & homes & yet another season has slipped away from us. #ME #pwME #MEcfs #LongCovid .🌥️💔🌦️.
10
20
215
I've been in some fairly terrifying situations in my life but nothing scares me more than being a severe ME #MEcfs patient in an NHS hospital where due to the ignorance of HCPs I'm denied life saving treatment & yet this is what's happening to women around the🇬🇧.#DontLetMEDie.
5
44
203
'Both Wessely & Sharpe have both frequently addressed employers orgs & health insurance groups making plain that they need to write #MEcfs off as a psychological disorder to avoid swiftly mounting costs in the face of rapidly rising numbers of ppl with this chronic disease .1/2
16
66
205
I still don't relate to the 'energy envelope' concept, severe & very severe #pwME often experience permanent, ongoing PEM & we don't 'recover' from over exertion. #MaeveInquest.
11
26
204
"Study decodes link between #LongCovid & M.E.'. 'Long Covid & #MyalgicEncephalomyelitis #ME #MEcfs are closely related, confirms a study.". #MedTwitter #MedEd .
7
80
195
"The Disgraceful and Dangerous Situation in the UK that Harms #ME Patients" ."Only last week, a young teenager died with severe ME when her GP refused to attend her at home.". #MEcfs #pwME #LongCovid #MedTwitter .
14
102
203
Boxer was banned from a prominent #ME F/book forum for spamming members about her “natural recovery”.Moderators expressed unease about her posts in 2019 which claimed she had “nearly recovered” & wanted to “share her journey with you all to give you hope”.
11
28
193
Dr William Weir is being interviewed live on @Channel4News this Friday, August 9th, following the coroner's verdict, between 7pm and 8pm. #MaeveInquest .#ME #pwME #MEcfs.
2
96
195
"Prof Griffin of Leeds Uni said the study suggests “the approach to treating conditions such as #LongCovid & #MEcfs using graded exercise regimens is entirely flawed & it appears that over exercising under these circumstances is actually directly damaging.
4
79
189
"Recognise that people with ME #pwME #MEcfs may have experienced prejudice & disbelief & feel stigmatised by people including family, friends, health & social care professionals who do not understand their illness" - @NICEComms guidelines for ME . image Chiharu Shiota
7
64
188
Tomorrow afternoon, while the fate of thousands of #pwME lies in the hands of others, including those who should never have been allowed anywhere near any of us, perhaps we could get #PublishThatGuideline @NICEComms trending again + any other suitable #.
7
76
191
I've emailed the British Acupuncture Council @TheBAcC & asked them to publicly correct claims made about ear seeds - Acu Seeds being a cure for M.E on #DragonsDen & emphasised that M.E #ME #MEcfs is incurable & in some cases fatal.It would be good to have their support.
10
40
187
'Lead author Dr Kiran Thapaliya said the 7T MRI showed the brainstem was significantly larger in #MEcfs & #LongCOVID patients compared to those who did not suffer from the same ailments' . #pwME #MedTwitter #MedEd #MyalgicEncephalomyelitis .
6
71
182
'The history of ME/CFS with exercise is one of false hope. More than 3 decades of trying exercise in this population can be summed up in one sentence: exercise can be harmful, sometimes life threatening, and should be avoided. (1).
2
47
184
@GeorgeMonbiot @WesselyS this is an invitation to you, Clare Gerada, Michael Sharpe, Trudie Chalder, Peter White & Esther Crawley & everyone else who is responsible for this, to apologise publicly & admit that you got it completely & utterly wrong about M.E.
5
36
184
Even when someone from the ME community isn't visible online & isn't typing or sharing or advocating or joining in in some way which we can all see, .they are no less a part of this community & they're never forgotten or out of our minds 💙. #pwME.
6
20
176
Its not realistic to be expected to pace yourself adequately when unexpected crises emergencies & traumas which inevitably happen in our lives take place .#ME means patients are always highly vulnerable to extended PEM .We're not in control & we aren't to blame.#MEcfs #LongCovid.
10
29
181
We need funding for biomedical research only for #ME, under no circumstances must any further funding be given to BPS or FND proponents, psychologists or anyone affiliated with Wessely, Sharpe, White, Chalder, Crawley, Garner etc who've done so much harm to #pwME .#MedTwitter.
ME: we need more funding and more research
4
48
182
I really do hope @swastrosarah & @TimesONeill can feel the continued support, solidarity & love which the whole #ME community are sending them both throughout week 2 of #MaeveInquest .🩵🫂🩵.
4
40
176
'The Price of Exertion in those with #PEM' (#PESE) - Ed Yong @edyong209 . #MEcfs #ME #pwME #LongCovid #myalgicencephalomyelitis #MedTwitter #MedEd .@NHSuk
2
66
181
"The reality is M.E is a serious, heritable, neurological condition" - Dr Nina Muirhead . #MEcfs #ME #pwME #LongCovid #myalgicencephalomyelitis #MedTwitter #MedEd.@NHSuk
5
62
177
"Forgotten faces of #ME 'harrowing' inquest agony & urgent call for change .As #MaeveInquest concludes the Mirror looks at other cases of those whose lives have been ripped apart by this cruel & widely misunderstood disease" . #pwME #MedTwitter .
3
59
176
At the Westminster hall #ME debate @GwynneMP said "We need far better understanding of this debilitating condition & its impact on the day2day lives of too many people Labour is committed to putting UK at the front of the queue for treatments by boosting clinical trial .1/2👇.
We welcome Andrew Gwynne MP @GwynneMP as Parliamentary Under-Secretary of State for Public Health and Prevention.
7
29
171
"New Blood Test For M.E #MEcfs Has 91% Accuracy". To make a donation to this research, please go to: .. #MedTwitter #MedEd #pwME .
4
56
163
Huge thanks to @MattNisbet6 for running the Brighton Marathon to fundraise for @MEResearchUK .“This is such an important area of health which sadly has been neglected for many years". "GP to run Brighton Marathon to raise funds for #ME #MEcfs research"
7
59
176
"Woman With #SevereME & EDS Starving To Death In NHS Hospital. Multiple failures by the medical system have brought her to this point" . #pwME .#MEcfs .#MEKills .#MedTwitter .
7
98
171
There are many extraordinarily courageous #pwME & #LongCovid here who have had their lives completely destroyed by #ME & LC & they're here doing their very best to support this community but they may well be holding on by a thread .Please don't be someone who breaks that thread🙏🏼
6
43
160
#MaeveInquest .“The medical orthodoxy is that #ME is a behavioural problem or a psychological illness, and that belief is deeply rooted in @NHSuk despite growing scientific evidence that it is a physical illness." -@TimesONeill .
3
59
170
Thank you for this Todd .It can't be emphasised enough that everyone with an ME diagnosis is potentially severe-very severe & that PEM/PESE is one of the key factors which can lead a #pwME to this level of severity .& that it's *exertion* intolerance not exercise intolerance.
I'm so excited to speak to the UK Department of Heath and Social Care Research Working Group on #MECFS on post-exertional malaise next month, sharing current physiological insights and future directions on potential responsible uses of clinical exercise testing to find a cure. 🙌.
1
34
167
To every #pwME #ME #MEcfs & #LongCovid everywhere who's using whatever energy is available, doing whatever is possible, to be seen, to be heard, to speak out against the cruelty inflicted on us all in a broken system which broke our health & our lives.Thank you all so so much💙✊.
5
36
167
Whatever anyone may tell you, this remains true. Huge thanks to all the honest, compassionate, incredibly courageous, supportive people with chronic illness on here for all that you do for this community . 🩵🫂🩵. #pwME #ME #MEcfs #LongCovid
0
38
160
'Had we as a community of scientists listened to #MEcfs patients a long time ago & really understood it better & did more research on it we'd actually be better & more equipped & more able to address the challenges of #LongCovid more .We just ignored it'.
3
50
161
'Fear' is a normal response to the threat of an increase in unbearable symptoms .If a Dr doesn't understand PEM-PESE they aren't qualified to treat #pwME .#MaeveInquest.
3
28
160
Desperately sad to hear @KaraJaneSings died today Sending love & deepest condolences to her family . 'In the end her body was too frail to survive Her spirit remained strong till the last & she faced the end with the same incredible courage that she showed throughout her illness'.
22
22
158
As a friend said yesterday re the @NICEComms Roundtable for the #MEcfs guidelines ."You don't ask criminals to support the implementation of a law they disagree with, ffs, you implement it and take action when they don't comply!".
4
42
157
"The country's leading expert on #ME", Dr William Weir, really must be put in-charge of all #ME education & policy & services for @NHSuk throughout the UK. His experience & depth of knowledge on #ME is unparalleled. #MaeveInquest #MedTwitter #MEcfs #pwME.
3
39
153
'Believing #ME is a condition that can be cured by attitude and effort is stigmatizing, no matter how carefully you try to frame it. That’s harmful, for individuals who blame themselves or get blamed for their suffering, and for the collective of people deeply affected' H Bastian.
1
34
147
"I am very poorly today & very stupid & hate everybody & everything" ~ Charles Darwin, in a letter to Charles Lydell 1.10.1861 .Darwin was ill for much of his adult life & is thought to have possibly suffered from #MEcfs . #pwME .#LongCovid .💙.
7
19
150
Thinking of all the other #pwME who are severe, housebound & live alone. It's extremely tough on many levels, thank you for being here with us all. Sending support & love to you all .💙🫂💙. #MEcfs .#LongCovid.
10
13
151
The vast majority of #pwME are extremely protective of other #pwME .We all know how absolutely essential it is to get the best possible advice as early as possible & how the worst advice can lead to permanent disability. #MEcfs .#LongCovid.
2
33
150
"New menopause guidance will harm women’s health, say campaigners" ."New evidence shows that CBT can help reduce #menopause symptoms including hot flushes & night sweats" It can't, it's just another example of women's health being completely disregarded😠.
14
36
148
It does seem that #pwME are endlessly put in a position where we have to educate journalists about the history of ME after their article on it has been published. 😠.
3
22
143
Everyones rightly completely horrified at what the Covid enquiry is exposing about those in power .It also shows what an #MEcfs public enquiry would expose if it was allowed to happen & how people might finally see the full horror of whats been taking place in the🇬🇧for decades.
7
38
146
Thinking of the sick & disabled & the #pwME & #LongCovid who are in Ukraine & sending love & support to every one of them . #pwMEsupportUkraine ✊🇺🇦💙💛.
3
23
145
So grateful to everyone involved in the excellent @Channel4News piece on #ME #MEcfs #pwME, especially Clare Norton & @TimesONeill. #channel4.
7
21
151
#pwME if you aren't already following Doctors with ME @doctorswithme, please do. They're doing fantastic work & helping everyone with #ME ."Doctors with ME is a unique, international professional association which is led by doctors and experts who suffer from ME themselves".
6
49
148
Huge thanks to #pwME who have been on here for .#MaeveInquest this week & to those who were able to share updates. It's helped enormously to be able to go through this virtually, together. 🫂 🩵.
6
14
150
@GeorgeMonbiot Can't ever thank you enough for your support George, your integrity & compassion in reporting on ME make it by far the best, most truthful piece ever on ME in the MSM & when the desperately needed change finally happens for pwME, your voice will be a key part of that.
1
12
150
Thank you @_NatashaDevon for covering #ME & for giving #pwME a much needed opportunity to speak about how ME has impacted their lives .Huge thanks to @johnthejack for speaking so honestly & movingly about living with ME & why radical change for #pwME is so urgently needed.
'Patients are alienated from the carers and support they should be having, it's very, very lonely. I am completely alone.' . Caller John has had ME, more commonly known as chronic fatigue syndrome, since 1986 - he shares his story with Natasha Devon.
1
28
154
#BringMillieHome #DontLetMEDie .@RCPhysicians @rcpsych @gmcuk we demand you publicly support the 2021 NICE guidelines for M.E. #MEcfs & reject the BPS model for ME & GET immediately. Your refusal to do so is leading to a catastrophic absence of life saving care for #pwME
2
75
149