explore | Grilled Cheese

I just got my first full refund on an order cancelled due to unpredictable supply lines.
Thinking of everyone with #ME #LongCovidME reliant on drugs NHS was prohibited from prescribing under the NICE guideline for CFS in 2007. NG206 compounded neglect in 2021.
#TradeBlockade #Shortages

Exercise is a standard treatment in POTS.
Orthostatic Intolerance, the 'o' in POTS, is reliably found in 70% #ME px.
Differential diagnosis is critical to safe clinical management, and ethical research, of #LongCovidME

www.youtube.com/watch?v=fL4p...
#pwME #LongCovidME highly recommend you save this presentation to your records. It is one of the most succinct descriptions of the disease process, packed with current international data, and full of promise based on almost 20 years of clinical experience.
🙏 Ron Davis

This is important. #ME #LongCovidME pose clinical challenges to every medical discipline.
#pwME the neglect of your illness is far more profound than the paradigm shift everyone has been fixated upon since the PACE debacle.
Medics urgently need proper training in safe management of #PEM

is cited as one of six national institutions failing #pwME #LongCovidME in the prevention of future deaths report.
The resistance to making these findings was no less in 2021-2024 than it was 2011-2015, especially from the Coroner's office www.judiciary.uk/prevention-o...

'Monbiot then wrote about Professor Sharpe’s accusation-in the process learning about the entire debate, including the history of the fraudulent PACE trial'
NB PACE Trial 'evidence' provided the basis NICE & NHS used to withdraw all drugs known to manage dysautonomia; symptomatic in #ME #LongCovidME

Unfortunately, contagion from that excrement has infected the entire system. Even the Suffolk service has no prescribing powers 🙄
The DHSC delay in establishing a clinical committee for #ME & #LongCovidME is inexplicable, except that politicians respond to the loudest voices. We lose ours to illness

I'm no medic, so can't give advice but would always recommend anyone with #ME #LongCovidME asks, "what's the metabolic load?" about any drug.
It's not a question Physicians are trained to answer, which should pique interest. If they fluff/gloss the reply, it's a signal. Something's not quite right.

justice4me.uk Please support lawyers to challenge this injustice, on behalf of everyone with #ME and #LongCovidME, regardless of disease severity.

Reflections on George Monbiot’s interview on Natasha Devon’s LBC show #ME #LongCovid #LongCovidME

Thanks to Dr Sanjay Gupta's fb feed for this cartoon. #pwME #LongCovidME

Bluesky is great for signposting though.
"The trickiness of unrelenting symptoms and avoiding anything hinting effort or concentration" is what everyone with #ME #LongCovidME needs to master. Thanks for thinking about it, but please, always, take good care of you. We owe you that much - and more

Yoga Nidra is perfect for #pwME
Western medicine could learn a lot from it, if only they wouldn't call it 'mindfulness' 😅
Being mindful of 200+ symptoms would drive me insane. Soothing the pns is wholly different, almost as good as sleep used to be before #ME #LongCovidME and has 0 metabolic load.

"the reality that when trust in one’s own body has been shattered, life will always have a hum of background fear. Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear."
@naomiwhitt.bsky.social 🙏🏼🫂😔
#ME #LongCovidME

I am not despairing. I am 'managing expectations' for #pwME #LongCovidME and their families. Legal action is limited and the neglect being experienced by too many needs more than the UK courts can achieve when UK government is so weak.

Little is to be gained by focussing on differences whilst ignoring overlap in similar symptoms

Speakers at yesterday’s Stanford Symposium on Molecular Basis of #ME frequently referred to the conditions as #ME and #LongCovidME because they are likely to be subgroups of post-infectious illnesses

Seeing how #pwME #LongCovidME at all life stages are routinely neglected and mismanaged by @england.nhs.uk - in several cases unto death (search PFD reports for ME or CFS) - if this Bill passes it will legitimate every known prejudice against disabled persons in sanctioning premature deaths.
Fascism

So thankful to have had @channel4news.bsky.social speaking up for so-called minority groups, like #pwME & #LongCovidME alongside doing what all decent journalists should but rarely do: report abuses of power for what they are; fraudulent scams.
Too many British journalists are part of the problem.