Alexis Gilbert
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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/
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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
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
NICE UK best practice guidance based on an evidence review.
Screenshot of the NICE guidance NH206. 1.11.14 Do not offer people with ME/CFS: • any therapy based on physical activity or exercise as a cure for ME/CFS • generalised physical activity or exercise programmes - this includes programmes developed for healthy people or people with other illnesses • any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4) • physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS. Box 5 Cognitive behavioural therapy The committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness. 1.12.29 Only offer CBT to adults, children and young people with ME/CFS if, after discussing it (see recommendation 1.12.28), they would like to use it to support them in managing their symptoms.
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
alexisme.bsky.social
A photo of a purple allium flower. A blurred background and Black text on White highlight which reads: Pushed myself more than I should to go out into the garden. Used the stair lift and had my feet up but still my heart rate was going up a lot. But I needed it for my mental health. Getting so sick of staring at the same four walls.
May 18, 2025 at 11:09 AM
alexisme.bsky.social
"I just want to live not in pain" scribbled on lined paper with a black pen
May 18, 2025 at 11:08 AM
alexisme.bsky.social
@annadixonmp.bsky.social great to see you bluesky instead of X now - hope you can advocate for those in your constituency with ME and long covid this ME awareness week.
Myth versus fact images from World ME alliance https://worldmealliance.org/worldmeday/ Myth versus fact. Myth ME is a mental health condition, fact ME is a biological illness that disrupt the metabolism and impaired brain immune system and autonomic nervous system.
May 18, 2025 at 11:07 AM
alexisme.bsky.social
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!
April 26, 2025 at 11:03 AM
alexisme.bsky.social
Taking care of yourself is productive and productivity is not the measure of success.
April 21, 2025 at 8:38 AM
alexisme.bsky.social
In the Sunday mirror today in the UK. Thank you Jeremy for listening and telling my story in a sensitive way.
A photo of page 31 of today’s Sunday mirror newspaper with a large photo of Alexis lying in the hospital bed and a smaller one with his young son on his front The article text reads: Covid doc stuck in bed for 3 yrs BY JEREMY ARMSTRONG A DOCTOR bed bound for three years with long Covid says he feels abandoned by a government pretending it does not exist. Dr Alexis Gilbert, 41, caught the virus in July 2022 and still suffers fatigue, pain and sensitivity to light and noise. The dad-of-two, once a keen mountaineer, is unable to work or help his wife, who is also a doctor, care for their kids aged 11 and five. Diagnosed with long Covid and ME - also known as chronic fatigue syndrome - he can sometimes sit up in the mornings but even having the curtains open hurts him so he spends most days lying down in the dark. Dr Gilbert, of Burley in Wharfedale, West Yorks, who advised on public health in the pandemic, said he knew of five sufferers who had ended their lives. He said: "There is a lack of care and research, there has been no dedicated funding. People are struggling in silence." Long Covid impacts an estimated 1.5 million people across England and Scotland. A government spokesman said: "We are committed to ensuring there are quality services across the country." BEFORE He could climb mountains
March 23, 2025 at 12:25 PM
alexisme.bsky.social
Interview on bbc news today

Full version with @binitakane.bsky.social is at 6.30pm on Look North BBC1 Yorkshire

www.bbc.co.uk/programmes/b...
March 20, 2025 at 5:30 PM
alexisme.bsky.social
Millions missing with long covid and ME
A black-and-white image of Alexis. His eyes and his mouth have been covered by red lines across the picture drawn on.
March 16, 2025 at 2:34 PM
alexisme.bsky.social
Daffodils
Three yellow daffodils slightly out of focus on a Polaroid picture frame
March 14, 2025 at 2:08 PM
alexisme.bsky.social
A purple heart on a cloudy background
March 3, 2025 at 3:58 PM
alexisme.bsky.social
Should have said a return of investment of £1.83 per £1 spent. As much as £19 benefit to wider economy for every £1 spent in NIHR research source: www.england.nhs.uk/long-read/ma...
The 2022 ABPI Life Sciences Superpower report found that delivering the Life Sciences Vision could raise £165 million of additional revenue and save £32 million of costs for the NHS every year. The latest National Institute for Health and Care Research (NIHR) annual report 2022/23 highlights that for every £1 invested by NIHR to support research, a return of £19 to the wider wealth of the nation is generated. Every £1 million spent by charities on medical research in the UK contributes £1.83 million to the economy.
March 2, 2025 at 8:31 PM
alexisme.bsky.social
@AshleyDalton_MP @wesstreeting I hope you can take a moment to read this. I was a Consultant in Pubic health leading the response to outbreaks to protect the public. Now I am bedbound with ME. Please pleas please can you devote just 0.06% of the NHS budget to ME to give me a chance of recovery.
Please fund the ME/CFS action plan due in March 2025. • Without dedicated funding, this plan is meaningless to the 2 million UK citizens affected by ME/CFS and Long Covid. • The economic case is clear: for ever El invested in medical research, the return is approximately £0.83 annually in perpetuity. • Funding this plan would return thousands of working-age people to productivity, reducing welfare costs and NHS A decision not to fund the plan with ring fenced money would effectively render the upcoming action plan worthless. The ThereForMe campaign's request for £100 million annual funding represents less than 0.06% of the NHS budget to address conditions affecting over 3% of the population. The evidence from NICE guidelines (NG206) and the ME/CFS Priority Setting Partnership o shows what needs to be done - only your funding decision can make it happen. Your decision will determine whether millions continue to suffer needlessly or begin receiving the care they deserve. Below the text is a photo of a POV from a patient on a hospital bed in a ward. The Light has created coloured halos around the photo and vignette to the edges makes it seem like its taken from a partly closed eye.
March 2, 2025 at 2:53 PM