Профиль

sarah boothby

Профиль Vively

Speaking up for everyone affected by severe/very severe ME/LongCovidME. #MEKills #MaeveInquest #pwME backstory: https://x.com/swastrosarah?lang=en-GB Justice4ME.uk ME is much more than chronic fatigue; it kills every year.

sarah boothby

31 июл., 20:20

@longcovidkids.bsky.social is testimony to the long term outcomes of the policies that people in England voted for. They stopped because the last iteration blew tax revenue on compounding national debt, not because they care about the future (represented by our children) or the health of the nation.

sarah boothby

11/12 would require a completely new type of children's services in England. After 16 years without the (universal) integrated children's services established over the previous 11, all we have left is persecuted parents. I like your sentiment but delivery needs infrastructure elected governments 1/2

sarah boothby

29 июл., 18:03

At last!! #ME #Research into unrefreshing sleep, led by OMF Ron Tomkins www.omf.ngo/sleep-distur...

Sleep Disturbance in ME/CFS and Long COVID - Open Medicine FoundationWe intend to examine multiple sleep studies that have been conducted in the past two years and performed at the MGH Neurology Sleep Medicine Laboratory.www.omf.ngo

sarah boothby

25 июл., 17:34

New pre-print claiming extraordinary benefit from low dose rapamycin (6mg/week) with improvements in #PEM recovery/lessened OI/lessened fatigue. Measured over 3 months. n=86. No controls. Reliable sampling (Bateman) pubmed.ncbi.nlm.nih.gov/40502741/

Low Dose Rapamycin Alleviates Clinical Symptoms of Fatigue and PEM in ME/CFS Patients via Improvement of Autophagy - PubMedLow-dose rapamycin effectively reduced PEM and other key symptoms in patients with ME/CFS, as measured by BAS, SSS, MFI, and SF-36. Future studies should encompass dose optimization and develop a diag...pubmed.ncbi.nlm.nih.gov

sarah boothby

24 июл., 15:45

Salt in the wound. Deep wounds, already salted by indifferent NHS Execs, DHSC ineptitude/laziness (delete as preferred; I know I am a LOT more productive and a lot less afraid of upsetting any apple cart ploughing over the right to equal access to healthcare by UK residents) and political naivety.

Andrew Gifford

My grumble isn't about my photos not appealing, it's about the lack of gratitude for a really sick person doing their very best to make something of a very shitty situation. I can totally accept creative differences/failings on my part, but I struggle with how cold it feels. It's salt in the wound.

sarah boothby

23 июл., 09:54

I hate #ME, and everything that goes with it, because of the wasted potential it represents. Maeve was born a scholar, knew the syllabus for all her exam subjects better than her teachers, and they had confidence in her (sometimes too much; she was only a child). The stupidity of British medicine

sarah boothby

22 июл., 08:19

www.rnz.co.nz/podcast/all-... In England, NHS doctors are making identical mistakes with #ME in adults. Paediatricians are less reluctant to tube feed a child who cannot sit up and eat. Gastroenterologists prefer to let #pwvsME starve. The Plan for ME promotes this opinion as government policy.

Introducing: All In Her Head episode of All In Her HeadA young woman is starving to death. Some doctors say she needs life-saving surgery; others say the diagnosis doesn't exist. All In Her Head is a seven-part investigative podcast from RNZ’s award-winni...www.rnz.co.nz

sarah boothby

19 июл., 21:56

The so-called #ME community is riddled with duplicitousness (England/Wales). I am close to quitting. This is not about my ego. It is about rigour. When the evidence does not fit our opinions/experiences/knowledge, we should review. Nothing will be gained from yet more lies/bias/intellectual laziness