Alexis Gilbert
LightNews LightNews
banner
alexisme.bsky.social
Alexis Gilbert
@alexisme.bsky.social
830 followers 720 following 130 posts
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/
Posts Replies Media Videos
Pinned
alexisme.bsky.social
Alexis Gilbert @alexisme.bsky.social · Aug 2
What do these diseases have in common?

Asthma
Syphillis
Multiple Sclerosis
Myalgic Encephalomyelitis
Ulcerative colitis
High blood pressure
Stomach ulcers
Vaginal discharge
Huntingtons chorea
alexisme.bsky.social
“For many patients, the situation has deteriorated with the closure of long covid clinics and 51% of adults reporting they have been discharged from NHS services despite ongoing symptoms.”

www.bmj.com/content/390/...
Investment in care and clinical trials in long covid is an economic and moral imperative
www.bmj.com
August 19, 2025 at 9:20 AM
alexisme.bsky.social
“My own experience of having a referral to a neuropsychologist declined and a neurologist tell me there was nothing they could do, despite profound cognitive dysfunction, underscores a systemic failure to tackle a mass-disabling event.”

www.bmj.com/content/390/...
A screenshot of the linked article
August 19, 2025 at 9:20 AM
alexisme.bsky.social
“…the way long covid, M.E., & other Infection-Associated Chronic Conditions (IACCs) are managed by health systems; patients with complex multi-system illnesses do not have a specialty that provides the holistic care they need and multi-disciplinary care does not exist.”

www.bmj.com/content/390/...
Investment in care and clinical trials in long covid is an economic and moral imperative
www.bmj.com
August 19, 2025 at 9:18 AM
alexisme.bsky.social
“Investment in high-quality biomedical research is not optional; it is an economic and moral imperative, a point now belatedly acknowledged in the UK’s ME/CFS Delivery Plan”

My Rapid response in the BMJ today

www.bmj.com/content/390/...
Investment in care and clinical trials in long covid is an economic and moral imperative
www.bmj.com
August 19, 2025 at 9:16 AM
alexisme.bsky.social
Today is Severe ME day. Please take a moment to understand our reality. ❤️‍🩹
Black text on a green background. Having severe ME is not receiving care because of 70 years of neglect and gaslighting Black text on a green background. Having severe ME is being one of the sickest patients in the hospital yet receiving the least medical care. Black text on a green background. For those with severe ME it can mean being spoonfed by your carer not being able to eat at all and needing tube feeding. Black text on a green background. Having severe ME is watching friends die from lack of support or basic medical care.
August 8, 2025 at 11:51 AM
alexisme.bsky.social
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
August 8, 2025 at 11:47 AM
Reposted by Alexis Gilbert
decodemestudy.bsky.social
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.
August 6, 2025 at 6:24 PM
Reposted by Alexis Gilbert
theguardian.com
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...
www.theguardian.com
August 6, 2025 at 6:15 PM
Reposted by Alexis Gilbert
decodemestudy.bsky.social
(2/2)
Graphic 1 of 4. DecodeME: The Results graphic. The slide says: ‘The signals discovered are involved in the immune and nervous systems, indicating immunological and neurological causes to this poorly understood disease’. Graphic 2 of 4. DecodeME: The Results graphic. The slide says: ‘At least two of the signals relate to the body’s response to infection’. Beneath this is an image of green germs. Graphic 3 of 4. DecodeME: The Results graphic. The slide says: ‘Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS’. Beneath this is an image of a person curled up in bed feeling ill. Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘All of these signals align with how people with ME/CFS describe their illness’.
August 6, 2025 at 7:06 PM
Reposted by Alexis Gilbert
decodemestudy.bsky.social
(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more.

These findings reflect the lived experience of thousands of #pwME.

Thanks to all our participants & supporters who made this possible!

Read a summary of our results: shorturl.at/pgsjk
Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides. Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass. Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs. Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.
August 6, 2025 at 7:03 PM
alexisme.bsky.social
Featuring helpful links and writing by @georgemonbiot.bsky.social @openmedf.bsky.social @batemanhornecenter.bsky.social @nicecomms.bsky.social @thereforme.bsky.social @actionforme.bsky.social and more
alexisme.bsky.social Alexis Gilbert @alexisme.bsky.social · Aug 2
What do these diseases have in common?

Asthma
Syphillis
Multiple Sclerosis
Myalgic Encephalomyelitis
Ulcerative colitis
High blood pressure
Stomach ulcers
Vaginal discharge
Huntingtons chorea
August 2, 2025 at 1:52 PM
Reposted by Alexis Gilbert
unrealarthur.bsky.social
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.”
August 1, 2025 at 4:57 AM
alexisme.bsky.social
What do these diseases have in common?

Asthma
Syphillis
Multiple Sclerosis
Myalgic Encephalomyelitis
Ulcerative colitis
High blood pressure
Stomach ulcers
Vaginal discharge
Huntingtons chorea
August 2, 2025 at 12:35 PM
alexisme.bsky.social
Full 20 slide post here: www.instagram.com/p/DM2eVC9sYV...
Black text on light Green background. What do these diseases have in common? Asthma Syphillis Multiple Sclerosis Myalgic Encephalomyelitis Ulcerative colitis High blood pressure Stomach ulcers Vaginal discharge Black text on a green background with a cream frame. “ Doctors thought they were caused by emotions and thoughts and patient suffered instead of getting appropriate treatment.” Black text on a green background with a cream frame. Science showed that each of these illnesses has an underlying biological cause and the psychological symptoms of an impact of the disease not the cause Black text on a green background with a cream frame. “ despite overwhelming scientific evidence there are still many doctors who treat ME (myalgic encephalomyelitis) as psychological. This is morally ethically and scientifically wrong.
August 2, 2025 at 11:58 AM
alexisme.bsky.social
Some helpful phrases to support your friend with chronic illness
A green background with a white box. In the box is blue text. This reads: your feelings are valid I’m here to listen. Without judgement, I’m here for you. A green background with a white box. In the box is blue text. This reads: it, it’s okay to express your pain and frustration. I’m not here to fix it, just to support you in whatever way you need. A green background with a white box. In the box is blue text. This reads: I am here to sit with you without expectation. A green background with a white box. In the box is blue text. This reads: it, it’s okay to feel overwhelmed. This is overwhelming.
July 31, 2025 at 2:03 PM
alexisme.bsky.social
The words help ME is spelt out in capital letters using used medication foil packets. The photo is black-and-white and the background is dark grey Cream background with a green large square with rounded corners. Inside the large square the words “my dreams” are printed. Inside a much smaller green, coloured darker green, set within the large square, are the words “my existence”.
July 30, 2025 at 8:15 PM
alexisme.bsky.social
The emptiness of the days isn’t reflected in my thoughts. They still race and rage against this existence. Written in black pen on lined paper.
July 28, 2025 at 10:01 PM
alexisme.bsky.social
What the ME delivery plan should have looked like - full post here:
www.instagram.com/p/DMa8sjPMzd...
Green background with white text Research Ring-fenced, multi-year ME and long covid Research Fund of £100m per year overseen by a scientific board with 50% independent patient representation and with 80% allocated to biomedical mechanisms and therapeutics, not behavioural studies. Living with ME National network of ME Centres of Excellence delivering: 1.Home-based outreach for severe/very severe patients 2. Rapid-access inpatient beds with low-stimulus environments for emergency care. 3. One stop online clinics (eg. immunology, cardiology, neurology, sleep etc) Social care Automatic highest-rate disability benefit entitlement for patients who meet severe or very severe criteria, removing the real harm done by detailed assessments and reassessments. 24-hour home-care entitlement for all very severe cases. @alexis_me Education Creation of a new medical specialty to look after medically complex illnesses and comorbid patients including ME and other IACCs such as long covid. This would have its own postgraduate training scheme and consultant posts in every hospital. Training would include the patient experience, immunology, cardiology, infectious diseases, renal and respiratory medicine, environmental medicine and more including the history of ME.
July 22, 2025 at 8:18 PM
alexisme.bsky.social
A teal green background with white writing. UK ACTION PLAN FOR ME We've been waiting years for a delivery plan of research and care for people with ME in the UK. It has been pushed back time and again, while we wait in pain and without decent care for an illness that affects more than 400,000 people in the UK. We need research. We need care. We need action. @alexis__me alexis_ _me @wesstreeting @ashleydaltonmp @dhscgovuk will we be seeing the action plan before the summer recess of Parliament next week? We've been promised this plan is going to be published time and time again and we're still waiting. @thereforme.uk @joanne.platt.mp @_annadixonmp #millionsmissing #me #mecfs #dhsc #ukgov
July 15, 2025 at 9:20 AM
alexisme.bsky.social
June 5, 2025 at 3:24 PM
alexisme.bsky.social
The back of the chair is visible through the doorway of a balcony. Black-and-white photo shows raindrops on the banister and a beach in the background.
May 29, 2025 at 12:49 PM
alexisme.bsky.social
A pink lupin
May 25, 2025 at 11:10 AM
alexisme.bsky.social
Yes yes yes - thank you @putrinolab.bsky.social @binitakane.bsky.social @sunny-rae1.bsky.social and all those who wrote, organised and signed this robust evidenced based response to the gaslighting outdated opinion piece in the @bmj.com

www.bmj.com/content/389/...
white text on black background that says: "people living with severe ME/CFS deserve to have hope. But hope will come from effective therapies backed by robust clinical research, not opinions."
May 21, 2025 at 2:49 PM
Reposted by Alexis Gilbert
chromatowski.bsky.social
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.
February 23, 2025 at 11:32 PM