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Alexis Gilbert

@alexisme.bsky.social

Medically retired due to M.E. Previously Consultant in Health Protection, FFPH (2020) MPH MBBS BSc | Severe ME, Long Covid and POTS patient | Global health Most active on IG stories: https://www.instagram.com/alexis___me/

133 Posts862 Follower719 Folgt
Alexis Gilbert@alexisme.bsky.social · last yr.

Healthcare not handcuffs: the NPCC must change guidance on pregnancy loss investigations to stop intrusive practices at times when people are at their most vulnerable and grieving. Agree? Join me and sign the petition now: you.38degrees.org.uk/petitions/ch...

Change the NPCC Guidance on Pregnancy Loss Investigations

This guidance is out dated, legally questionable and deeply traumatising to individuals experiencing losses. The surveillance and accusations aimed at grieving women and birthing people is a gross bet...

you.38degrees.org.uk

The Guardian@theguardian.com · last yr.

Scientists find link between genes and ME/chronic fatigue syndrome

Scientists find link between genes and ME/chronic fatigue syndrome

Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community. Early findings from the world’s largest study into the genetics of the condition pinpointed eight regions of the human genome that were substantially different in people with an ME/CFS diagnosis compared to those without the illness. Continue reading...

theguardian.com

Arthur@unrealarthur.bsky.social · last yr.

Update from Isla’s mother @swiftsandswallows.bsky.social , “We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.”

Swiftsandswallows Isla’s mother post on Twitter, “We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.”
sarah boothby@swastrosarah.bsky.social · last yr.

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

Alexis Gilbert@alexisme.bsky.social · last yr.

What do these diseases have in common? Asthma Syphillis Multiple Sclerosis Myalgic Encephalomyelitis Ulcerative colitis High blood pressure Stomach ulcers Vaginal discharge Huntingtons chorea

C.H. Romatowski@chromatowski.bsky.social · 2y ago

NIH recently found 1 in 22 ppl who’d had Covid developed ME/CFS. The “mild” form of that disease, as @julialmv.bsky.social’s graph shows, means losing capacity to do 50% of your daily activities. What would you give up? Friends? Time w/your kids? Could you cut work hours in half w/o losing yr job?

A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.
Alexis Gilbert@alexisme.bsky.social · last yr.

Anyone spot the obvious issue with this DWP form which is aimed at people who may have cognitive dysfunction amongst other things? Seriously, did no one read this before they put it out there for millions of people to use.

A screenshot of the ESA WCA form which shows a cross in the box they want you to include and a tick in the box of the things they don't want you to include!