sarah
@swastrosarah
Followers
2,650
Following
845
Media
38
Statuses
8,863
speaking up for all affected by severe/very severe #ME . Daughter, 27, died from ME Oct 2021. Prevention of Future Deaths report to NHS, DHSC & NICE due 2024/5.
Exeter
Joined April 2021
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Pinned Tweet
Long 🧵Daughter's diary entry, age 12
'The writing beyond this page is strictly private and is only to be viewed with the express permission of Maeve' Of course I never asked or viewed. She died 2021 from
#ME
aged 27. We never identified a viral trigger. Lo & behold,
1/13
50
141
694
My daughter had
#verysevereME
.
@NHSEngland
failed her. She died at 27. She loved her life. She did not want to die. Caring for her through the torment of medical neglect of a fatal illness was traumatising.
@NICEComms
please consider the social impact of guidance
@RCPhysicians
92
264
894
#InquestUpdate
my daughter died from medical and local authority neglect of
#VerySevereME
Oct 2021. All witnesses who were involved with Maeve's care have now been heard and submissions made by the properly interested parties (NHS Hospital, Local Authority Social Services
1/4
33
168
733
Preparing for the inquest into the death of my only child from medical neglect of
#VerySevereME
is soul destroying.
20 witnesses to represent an entire hospital & local government social services.
Only 2 understand pathology of ME poses a real risk of death from malnutrition.
85
164
689
One of the big shocks about
#ME
for me was discovering I had to become expert in managing a very dangerous illness without any advice from medicine or the ME organisations. The NICE review has done nothing to improve the situation. The risk of death not even mentioned in it.
15
137
664
#InquestUpdate
my daughter died from medical and local authority neglect of
#VerySevereME
Oct 2021. 2 weeks full hearings begin 10am Mon 22 July 2024.
2-3 witnesses each day.
She was 27 and wanted to live.
Please contact HM Coroners for details of how to attend remotely.
31
177
435
My only child, 27, dying from
#verysevereME
before my eyes because
@NICEComms
@nhsuk
have been hampered for decades by the erroneous beliefs of psychologists instead of guided by factual evidence from biomedical research is destroying me too.
@MEAssociation
@actionforme
@MEActNet
38
119
417
Maeve didn't want to be remembered for being ill. She didn't want to be ill. How anyone can imagine being ill is a choice is beyond me. How an entire hospital could agree to refuse to save the life of someone who was so evidently ill; also beyond me.
14
51
392
This is how my daughter died. 3 hospital admissions sent her home to die from malnutrition & dehydration.
I was the only person keeping her alive.
She died hungry, wanting to eat, wanting to live, neglected by medicine all her 27 years.
#verysevereME
@MEAssociation
@actionforme
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
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147
434
38
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387
Every little discovery of how my daughter lived with
#SevereME
before medical neglect of
#VerySevereME
killed her (2021) breaks me. This afternoon it was these, found in her purse.
She was the world to me.
36
46
367
#InquestUpdate
No sign of the .pdf
Wondering how Archer could not find starvation was caused by NHS failing to prescribe adequate nutrition to sustain life when the court heard hospital had not monitored Maeve's intake was below 900 calories per day
1/2
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369
Long 🧵My daughter's voice, 4 Jan 2021 (NICE had published revised draft guidance for ME/CFS Nov 2020) 'I have been tired since I was 13. When I was 18 I was diagnosed with CFS/ME. I hoped diagnosis would help, that I would finally get treatment and recover my health. 1/
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1/3 "People with PEM are also frequently misdiagnosed. They’re told that they’re deconditioned from being too sedentary, when their inactivity is the result of frequent crashes, not the cause. They’re told that they’re depressed and unmotivated, when they are usually desperate
6
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345
#InquestUpdate
the findings today are not a verdict on
#ME
. The hearing 10:00 BST Friday 27 September 2024 may be. Between now and then,
#pwME
get your own stories told. Write to your local news outlet. Facts not fiction. Only psychiatrists think ME is a mental health condition.
12
137
340
CW 'we don't talk enough about very severe ME'.
In the last weeks of my daughter's life, I asked every day for palliative care. Our GP tried her hardest. The palliative care consultant did not believe death from neglected ME was possible. Palliative care denied.
@DoctorsWithME
@NeleHelena
Nele, I am so incredibly sorry to hear your disease is steadily progressing. Even within this space, we don’t talk enough about very severe ME. I hope medicine catches up (FFS), but I also wish you had autonomy over your body, and your life. It’s the least they could do 💔
0
2
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Saying it again.
#pwME
are some of the BEST I've ever met. Brain fog is a curse. Dysautonomia is a curse. Mito failure the biggest curse of all but the people. The people are some of the best.
Maeve being one such.
Working on her novel, at last, every day.
🤞🏼for a good publisher.
10
29
333
My daughter died from medical neglect of this illness. No other diagnoses. Age 27. She was starved to death by our
@NHS
(employing these Royal Colleges) and the only place that had the equipment to treat her. Inquest opened 2021. Findings will be made public.
#NHSReform
#MEcfs
Refusal of these orgs to support
@NICEComms
guidelines for
#MEcfs
leads to 'shockingly poor NHS care for
#pwME
'
'Medical leaders sign joint statement in response to NICE guidance on ME'
@RCPhysicians
@RCPEdin
@rcgp
@rcpsych
@AoMRC
@FSEM_UK
@FOMNews
13
26
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30
117
320
This piece was seen by an assessing Social Worker last night.
#VerySevereME
too unwell to speak. Unable to eat without assistance. No family support. Thanks again
@Channel4News
you've made an immediate difference to a lonely soul in desperate need of care & support 🙏🏼🙏🏼🙏🏼
Myalgic encephalomyelitis: Lives devastated - and sufferers told it's made up
162
864
2K
8
68
311
I do not miss
#ME
, the uninvited guest, one bit. I miss my daughter, every minute, every day, but not ME. It was a thug, taking over everything, destroying joy, ruining youth, and friendship, and adventure. I hated it then - and I hate it now. 11% of the population is a lot.
13
42
300
27 September 2022. New date for first public hearing of the inquest into 27 yr olds death from ME.
11 months 24 days after she died.
10 years after she was diagnosed.
14 years after a mild viral infection. All tests were negative.
#MEKills
#LongCovid
#MyalgicEncephalomyelitis
19
65
297
in teen lit.
It is too easy to push through because you don't want to be left out, at the beginning.
It was too easy for healthcare professionals to miss it & pathologise puberty & family instead.
@rcgp
@RCPhysicians
#MyalgicEncephalomyelitis
#pwME
#ME
#MECFS
#LongCovid
/ends
11
22
285
“you can disappear because someone is telling the wrong story about you” Jen Brae
2 days ‘til the 1st public hearing into my daughter’s death from ME. No other diagnoses. 14 years unwell. Viral infection; not acute.
#ME
#MyalgicEncephalomyelitis
#pwME
18
62
286
My child died from this medical treatment of postviral illness. Through self management - the only
@NHSuk
offer for
#SevereME
- she survived 14 yrs post mild infection.
I was expected to keep her alive solo. As I failed, alegations were made about me. Inquest opened 10/21
I’m utterly horrified at what is happening to some children with
#longcovid
. History repeating itself - this has happened for decades to kids with
#MECFS
. These kids desperately need care and treatment.
When will the medical profession wake up? 2/
11
241
1K
8
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281
from my
#pwME
daughter’s diary 16/10/2015 “I am only just 21 (but already too old to have peers when/if I go to uni) and Mum not yet 55. There is time. I will get better. But what will my life look like..?” She was A* student worrying about how to survive my death. She died b4 me
27
32
279
#pwME
yet another young woman in a
@NHSuk
Hospital Trust on the brink of starvation due to
#VerySevereME
. Trust has no idea what they are seeing, no guidance, no experts, no provision, no direct access to lessons learnt by
@RoyalDevonNHS
. Psychiatrists have been called in.
1/2
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279
GP Surgery and both divorced parents). HMC is taking time to reflect on the evidence and refer to relevant inquest law before concluding. Conclusion will be read into the public record at *Devon Coroner's Court 14:00 BST Friday 9 August 2024*.
2/4
2
25
269
#pwME
&
#familycarers
Things that are not supposed to happen: I provide life preserving care round the clock single handed for 7 months. My daughter dies from
#ME
age 27yrs 1month 7days. My employer, Devon County Council, fires me for being unable to work at the same time.
38
61
262
#VerySevereME
#Close2ME
#pwME
14 years for medical neglect of ME to kill my only child at 27 years. One of the most painful parts of mourning? Discovering how she had had to alter the settings on her smart phone to accommodate steady deterioration in neuro function. A* scholar.
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'I had every potential to be an asset to humanity, and hoped and intended to advance the cause of human flourishing - I achieved A* A grade levels and had offers from Russell Group universities' love from Maeve to every
#pwME
and
#Close2ME
@swastrosarah
Thinking of you, Sarah. You are incredible .You done Maeve proud 💙 Thank you so much for all you have done raising awareness of mistreatment of
#pwME
#SevereME
#VerySevereME
🙏 My new gastro consultant is following
#MaeveInquest
I can now keep my NG indefinitely. Thank you 💕🫂
16
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14
58
265
#InquestUpdate
the Coroner has asked all the PIPs (properly interested parties, NHS, Local Authority, GPs & family) to be ready to answer questions on both NICE Guidelines. This is FANTASTIC. It shows she is thinking about it being a failure of the State.
#pwME
#HumanRights
11
52
263
I've been through days of questioning at the inquest and hours of being questioned by the media. What nobody but others
#CloseToME
seem to understand is the impact of PEM in
#VerySevereME
. There is no symptomatic relief from PEM, there is only risk reduction eg Neuro nursing care
3
52
259
The idea that fear of effort ever afflicted my daughter, whose only diagnosis ever was
#ME
, is impossible. Effort was as natural to her as breathing. The only fear she ever showed was of being left to die from an illness her doctors had less knowledge of than she did.
8
52
253
While conventional wisdom has
#MECFS
as 'relapsing and remitting', the brief histories of many who have signed our letter to the Secretary of State show a steady deterioration over years. Where are the longitudinal studies into this neglected illness?
#research
#MedTwitter
15
40
252
"There is currently no cure, and the path towards finding one has been blocked for years thanks to chronic underfunding and a reluctance to give up bad science that harms patients. This isn't some casual cock-up from the BBC" ty Ellie Fry
@DailyMirror
5
50
245
thank you for focussing on how
#MEKills
. Psychiatry has no role in treating
#ME
. It is not strictly neurological either. They are just some of many symptoms. Others are: gastroenterological (complications from slowed digestion) metabolic (impaired mitochondria) & cardiovascular
Myalgic encephalomyelitis: Lives devastated - and sufferers told it's made up
162
864
2K
6
64
244
This Professor describes to a Public Inquiry what I went through with my daughter.
I was totally alone, calling for help for 9 months. Nobody helped. My only child.
@DevonCC
accused me of causing her symptoms.
Her only diagnosis was
#MyalgicEncephalomyelitis
#ME
And here he breaks down while explaining the absolute trauma experienced by smaller hospitals in particular - the "healthier" ICU patients were transferred out, leaving them coping with so much death.
They felt so alone.
84
2K
5K
8
63
236
all the time she was asking for help (Mar-Sep) and they were refusing to tube feed for more than 10 days max
&
Devon County Council failed in its statutory duty to protect Maeve from the harm above when she asked in Feb.
Any ideas?
2/2
11
41
235
It's exertion intolerance NOT exercise intolerance
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
1
36
176
5
35
233
Well done Karen, you articulated everything beautifully.
You are facing
@NHSuk
standard operating procedures with
#VerySevereME
: imminent death in hospital or at home. According to
#MaeveInquest
this is not a
#HumanRights
matter. It is. Inhuman and degrading treatment
@GwynneMP
Video of Karen Gordon filmed on 15 Aug at Conquest Hospital Hastings UK. Please share with as many people as you can. Karen has very severe ME. Please sign our petition to try to save Karen. Scroll down the petition page for latest update.
26
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7
115
232
#pwME
If you or your
#Close2ME
have the capacity to sue for medical negligence of
#ME
, contact Tim Annett at Irwin Mitchell in Shefffield. No win no fee. Tim.Annett
@irwinmitchell
.com. Please share far and wide.
6
163
230
My daughter had a piano for her 18th birthday; newly diagnosed with
#MEcfs
. Never well enough to sit up at it. She died from medical neglect 7 years later. A preventable death, using methods commonly available to other diagnoses. No mention of them in the UK 'Interim Plan for ME'
When the living room, where I usually lie with the bed and couch, is being vacuumed, I have to move to the old bedroom, on the floor. My accordion is in a box at the back right under the table. Never touched again. This isn't life. By the way not to change with GET or CBT.
16
28
303
16
51
227
Via full disclosure, just seen the statements for the inquest into my daughter's death from
#VerySevereME
.
Date for hearing now postponed to allow Coroner to review, & determine scope/witnesses with family & others 3 Aug.
To my mind, 0 doubt about public interest.
#MEKills
19
40
226
'the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.'
She died 3 Oct 2021, in the full knowledge of how and why she was being neglected as she was being killed by this neglect. Inhuman and degrading state sponsored 'healthcare'.
8
40
224
Please think of Cyrus. I miss him and his well informed and articulate tweets about
#VerySevereME
. He is now extremely unwell, still fighting for his life, unhelped by medicine despite his knowledge and requests for life saving treatment.
@CyruxiME
@Siobhan_ODwyer
#DontLetMEDie
13
40
216
"Millie’s family is now allowed to be with her at all times and advocate and support her!"
Thanks for listening Lancaster, please refer to
@RoyalDevonNHS
for details of safe tube feeding
#VerySevereME
5
44
213
The attitudes in this training video are what killed my daughter in 2021. They are actively contributing to punish countless others as you read this in 2024. NOTHING has changed. NICE G206 gives no guidance to clinicians on PESE/PEM. How do you 'pace' your heartbeats, gut, brain?
Thank you
@krishgm
@JaneDodgeC4
Doctors have been taught to gaslight patients with
#ME
for decades. This video from the 90s teaches GPs that patients are frustrating to work with because they are mistaken about the cause of the illness and can often engage in arguments.
49
213
579
10
53
210
#InquestUpdate
very emotional day for me & still processing. I'm sorry I could not (tho understand & accept the reasons why: witness protection) obtain full disclosure of Prof Hemsley's statement prior to the full hearing for child protection. Relieved beyond words that Justice
1
18
29
211
#SevereMEDay
65,000 uk citizens housebound without prognosis & abandoned by medicine trying their best to self manage so many symptoms they are too long to list. Reliant on social care that doesn’t exist.
No monitoring. No research. Just illness. Night & day.
1
72
203
how long before someone designs a study of gastroparesis in ME? This is not a comorbidity, imo, it is a symptom of mitochondrial damage
#Research
#ME
/cfs
#MedTwitter
#Gastroenterology
20
46
206
Countless GPs, a Paediatrician, self diagnosing & moving back again to where a centre of excellence for CFS confirms the diagnosis 4 years later, just in time for A Level results &
#SevereME
for the rest of her life. No help from anywhere after that. The diary is a treasure
6/13
1
10
201
Contact HM Coroner Devon for details of how to attend remotely via live link: *coroner
@devon
.gov.uk case ref 8057264*
My sincere thanks to Assistant Coroner Ms Deborah Archer for managing this complex case with respect for all involved, including the hundreds who attended.
4/4
12
29
197
#MyalgicEncephalomyelitis
#pwME
#ME
#MECFS
#LongCovid
@TimesONeill
Nobody ever told us this illness could kill. We found that out thanks to Merryn Crofts' & Sophia Mirza's familys' courage and grit. No acute immune reaction to the peculiar virus we had. No fibrile response
12/14
2
29
193
Anyone living with
#SevereME
is always on the edge of
#VerySevereME
. The symptoms are extreme & life threatening. Yet there is NO guidance (from NICE or ME charities) for health and social care professionals on how to manage
#PESE
#PEM
. UK wide institutional failure: how
#MEKills
2
47
190
Can’t find the right form of words to say ‘thank you’ for being here & supporting me with kindness, knowledge & well sourced, reliable information. Professional presenters complain about this platform (& it’s owner). My experience is good. I’m grateful. Thank you
#pwME
#LongCovid
16
13
190
This is how
#MEKills
. Being unable to sit up is a sign of severity, not indolence. Sitting someone up with
#VerySevereME
will exacerbate symptoms. It’s a mistake to make treatment contingent on sitting up to any degree. Tube feed & rest are all there is.
#MedTwitter
#MedEd
@arisonsned
@LetsDoIt4ME
Trying to explain to my GP that I am unable to sit up and bedbound, she replied "I have cancer patients who can sit up, I have to go and deal with them" and ended the call
#pwME
#MECFS
#MyalgicEncephalomyelitis
#neglect
21
15
111
2
54
186
Their argument is spurious. 100% bad science. Evidence shows there is less depression in
#pwME
than the general population despite more suffering than stage 4 cancer/renal failure. Now is the time to shine the brilliance of your hope for all to see.
@TimesONeill
@DafoeWhitney
3
48
184
1/4 More from Maeve's journal, "I cannot adequately describe how frightening it is to find at 18 that the only treatment which medical professionals are offering you, the only treatment there is, is not working, does not work, and that you are getting worse, not better."
4
46
183
'“Medicine is driven by the evidence and the paucity of evidence and therefore guidelines surrounding ME, and in particular severe ME, make decision-making and management more complicated.”
Shenton said many of the health professionals involved in caring for Boothby O’Neill
1/3
4
51
183
My daughter was not the first to die from a long established NHS policy of neglecting very severe ME.
She will not be the last. The inquest into her death no longer has an interest in the facts. No good can come of it without them.
Please remember her, not how she died.
7/7
13
35
182
to it from either of us. It lasted exactly 29 days for each of us, first me, then her. I recovered completely. She seemed recovered. Three weeks later, extreme, persistent tiredness becomes a significant feature, peppering her diary entries like the stars and exclamations
13/14
1
14
171
"Now he [Prof Sharpe] seems to have transferred his claims about treatments for ME/CFS to long Covid." One trick pony Prof, from the university we can thank for too many social ills.
7
42
174
@ErinAPN1
@BinitaKane
My honour if I can help change things for others. Please remember Maeve for who she was, not how she died. Bright, beautiful and generous. A loss to the world: with her linguistic ability, charm & intelligence, she would have been the diplomat in Russian and Hebrew needed now.
6
12
172
begins. I had the same virus. Went back to work too early. So dizzy I had to slow my gait too much & boss sent me home. 29 days off during term time from a KS3 behaviour unit is a long time off feeling pressured to go back but I recovered completely. No lasting effects.
4/13
4
7
169
Tired all the time is not normal. There must be something wrong. Ask everyone, what can it be? Meanwhile, like every child she's driven to do something & loves to learn so going to school isn't a question. It's just the tiredness & the headaches & being unable to fall asleep
5/13
1
9
168
@LBC
Live is always better for us because we are the only experts on this condition. Prof Sir Simon used military tactics in his assault on ME as an illness without an easy biomarker. Every move he made was to further his and his wife's careers. I'd like them to prove me wrong.
5
21
172
ME is killing my daughter (26).
@WesselyS
please explain. How is GET viable or safe treatment when energy transportation is progressively impaired? 9 years of steady decline without proper treatment. She is starving to death. Doctors don’t know how to help. You can
@Jeremy_Hunt
16
42
171
2/2
@steve_race
this is the 'conversion therapy' I was telling you about.
@wesstreeting
@GwynneMP
, family carers (like me) give up productive work all over UK to protect our relatives from v high risk of death from NHS ignorance
@RachelReevesMP
@leicesterliz
please, help us.
2
43
170
#pwME
please think of Alice and Jessica, told next two weeks are critical. Young, talented adults left waiting too long for
@NHSuk
to drop it's unofficial
#ME
/cfs treatment protocol.
ME is NOT an eating disorder nor FII by proxy.
Retrain
@rcpsych
@wesstreeting
@katlay
@BBCfileon4
7
40
168
Tue 7 Aug 2007 (Three weeks after a peculiar viral infection that lasted exactly 29 days, and recovering well enough to have orthodontic brace fitted; audition for school show; pack & move house; go to best babysitter's wedding with no complaints) 'God I am TIRED!'
2/13
1
9
163
It's been my good fortune to enjoy rude health all my life. My only child died from medical ignorance of a disease,
#MEcfs
, that stole half her life b4 it killed her @ 27. Does Western medicine always confuse symptom with cause?ME &
#LongCovidME
are not only neurological
#pwME
6
22
167
Hate to say it, but it's been a lot longer than 30 years of no change. Evidence disclosed at inquest is a review of everything every single
#pwME
goes through. Psychiatry has no role in this post-infection illness. Why do all state maintained professionals think it has?
@swastrosarah
@The_MRC
@AoMRC
@RCPhysicians
@TheBMA
@BMA_JuniorDocs
I've had ME for 30 yrs following meningitis. Was bedridden for 10. Parents told twice I was so critically ill I might not make it through the night. Told by a visiting GP "if you wanted to get better you would". Nothing has changed in 30 yrs. No test, treatment or cure.
0
7
56
9
38
162
#ME
/CFS stole my daughter.
@NHSEngland
@NICEComms
@RCPhysicians
@rcgp
drove the getaway car and crashed it. My daughter was killed. They all walked away.
There will be an inquest.
15
30
162
Thinking of a lot of pw
#VerySevereME
right now. There are so many, hidden from view, clinging to life, more or less cared for (depending on the availability of
#CloseToME
), many thinking death may be preferable. Not conventionally suicidal
@campbellclaret
@RestIsPolitics
3
32
158
#MEAwarenessMonth2022
there is no specialist service for
#VerySevereME
patients anywhere in the world. More than 65,000 in the UK alone. Why have they been abandoned?
#MedTwitter
#LongCovid
4
45
159
#pwME
At last, a response from the coroner. Inquest opened Oct 2021.
Bewildered still by evidence being undisclosed & having to nag for it. We want to assist in finding the facts, make them public, & help to prevent more deaths/permanent disablement
#MEKills
#MEcfs
#Right2Life
13
27
158
@TimesONeill
She loved reading and adopts an ironic voice from teen fiction to her style, leaping from one topic to another in a staccato of excessive yearning for a new top to intense dread of particular teachers or kids at school, without any narrative thread. School is
7/13
1
6
155
Mickey Mouse would have done a better job assessing my daughter's critical health and care needs.
8 highly skilled professionals talk themselves into a corner taking nil advice from NICE or expertise within the field over 7 months. px dies. In my sole care.
#VerySevereME
9
22
155
#MEAwarenessMonth2022
Most GPs have never seen anyone with
#VerySevereME
- not even in a case study. Why?
@rcgp
@NHS_HealthEdEng
#MedEd
13
28
155
@exceedhergrasp1
My daughter’s paediatrician (2008-2010) refused to diagnose ME. He told her to lower her academic expectations & run everyday. She couldn’t ‘lower’ her intellectual ability & she tried to run everyday. By 2011 with 13 A/A* grades she was severely affected. By 2021 she was dead.
22
38
155
@AaronCa11
Getting psychiatry out of
#ME
should have been the collective aim of ME charities decades ago. It’s the single biggest factor in the collective refusal in inquest disclosures to both assessment and treatment leading to my daughter’s death. It killed Sophia Mirza too.
12
44
156
Sat 11 Aug, Oooohh . . . tired . . . hav a dolls house YAY! Almost completely unpacked
Sun 12, I am still vair tired! Why?! Mum has said she wants me to stay in bed all day and rest :¿ (got a tiredness headache too. Ow ow ow ow)
Fri 17, in bed - still tired :(
And so it
3/13
1
6
149
#MEAwarenessMonth2022
I have almost no images of my daughter after 2016. She was 21, still growing, full of hope & life. She had to cut her waist long curly hair short & exist in a darkened room without distractions or company. I miss her desperately, but not her suffering.
The difference between posting something for ur fellow MEeps or on ur personal FB/IG page. The former full of support, the latter is that of people feeling uncomfortable with the disability & needing to look away. They do see it, they do notice & maybe one day they'll understand?
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'be wandering in a wilderness of quacks and blogs.
'I know of nobody who has benefitted from GET. I know a lot of severely affected people whose decline was precipitated by it. Evidence of harm is mostly anecdotal because large, rigorous studies into its impact have not been
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#pwME
can anyone give me advice on how to crowd fund for legal action arising from inquest findings, please?
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'treatment there is, is not working, does not work, and that you are getting worse, not better. How frightening to discover that there are no doctors who can help you, that they do not even know what is wrong with you, and that in looking for effective alternatives you will
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WTAF!?
@NHSuk
losing Mental Health Tribunals in cases of
#VerySevereME
because judges can read NICE G206 but doctors will not?
@rcpsych
@RCPhysicians
@rcgp
@RCPCHtweets
you have a lot of explaining to do about your diagnostic skills
@gmcuk
PLEASE investigate!
@Debbie_abrahams
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#pwME
#LongCovid
I need help, please. With no Expert Witness (Inquest, 2 full weeks, x3 witnesses per day, 22 July 24) I need each witness to answer on
#PEM
#PESE
. What would you ask highly qualified, experience & senior Physicians, Nurses, GPs, Social Workers about it? Please RT
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#MaeveInquest
10:00 Friday 27 September 2024 coroner
@devon
.gov.uk for the live link.
This is the 13th hearing. 1 witness who has submitted 3 separate statements. Why was he not called BEFORE HMAC concluded? Why has she not published half the facts heard? Whose court is it?
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Inquest disclosures update. Now we have it. Palliative care was actively obstructed in dying weeks by
@DevonCC
staff using S.42 to ignore medical opinion/advice Jan - Oct '21 & determined to persecute mother (me) rather than read NICE guideline instead
@LynRomeo_CSW
please help.
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Stalag 14. I don't know this girl.
The voice I know is her excited joy when Dad's partner is pregnant with their first. Struggling to reconcile her love for separated parents. Shuttling between addresses over 100s of miles. The jarring adjustment to different house rules.
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🙏🏼
@BhupeshPrusty
it is strangely comforting to listen to you describe what I observed over 14 years, especially what you say about so called co-morbidities in
#ME
/cfs
Your hypothesis describes how ME can be a progressive disease (starts at 26:44)
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& has read it all.
When witnesses withold evidence or fail to make a statement, their evidence cannot be heard but it can be found in disclosures. I await HMC Ms Archer's findings with interest. She has said repeatedly, an inquest is not a Public Inquiry.
100s attended daily
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Thinking of all the lives lost to
#verysevereME
for whom the new NICE guideline has come too late.
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'Why can't I just be normal like everyone else? Shut up!' goes beyond an adolescent's desire to fit in with peers.
24 Aug 'Well, two days to go until I'm 13!' then a list of the presents she was given at her beach party the weekend before, punctuated by how tired she feels.
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