iiinova — where your digital self keeps evolving

Alexis Gilbert @alexisme.bsky.social · 19/08/2025

“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/...

bmj.com

Investment in care and clinical trials in long covid is an economic and moral imperative

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Alexis Gilbert @alexisme.bsky.social · 19/08/2025

“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/...

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Alexis Gilbert @alexisme.bsky.social · 19/08/2025

“…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/...

bmj.com

Investment in care and clinical trials in long covid is an economic and moral imperative

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Alexis Gilbert @alexisme.bsky.social · 19/08/2025

“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/...

bmj.com

Investment in care and clinical trials in long covid is an economic and moral imperative

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Alexis Gilbert @alexisme.bsky.social · 08/08/2025

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.

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Alexis Gilbert @alexisme.bsky.social · 08/08/2025

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...

you.38degrees.org.uk

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...

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Reposted by Alexis Gilbert

DecodeME @decodemestudy.bsky.social · 06/08/2025

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.

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DecodeME @decodemestudy.bsky.social · 06/08/2025

(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.

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Arthur @unrealarthur.bsky.social · 01/08/2025

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.”

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Alexis Gilbert @alexisme.bsky.social · 02/08/2025

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

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Alexis Gilbert @alexisme.bsky.social · 02/08/2025

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.

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Alexis Gilbert @alexisme.bsky.social · 31/07/2025

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.

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Alexis Gilbert @alexisme.bsky.social · 22/07/2025

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.

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Alexis Gilbert @alexisme.bsky.social · 21/05/2025

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."

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C.H. Romatowski @chromatowski.bsky.social · 23/02/2025

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.

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Alexis Gilbert @alexisme.bsky.social · 18/05/2025

@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.

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Alexis Gilbert @alexisme.bsky.social · 26/04/2025

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!

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Alexis Gilbert @alexisme.bsky.social · 21/04/2025

Taking care of yourself is productive and productivity is not the measure of success.

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Sammie McFarland @sammiemc.bsky.social · 21/04/2025

📣 It’s finally out out - initial guidance to address the spectrum of LC as a disease & reinforces the need for translational research & large-scale treatment trials for treatment protocols. 🌍 🫶🏼 🙏 to the 179 exerts who collaborated from 28 countries ann-clinmicrob.biomedcentral.com/articles/10....

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Alexis Gilbert @alexisme.bsky.social · 23/03/2025

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

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Liz @liz-is.bsky.social · 20/03/2025

UK people, PLEASE add your name to this open letter asking the government not to cut disability payments action.versusarthritis.org/s/7956436/6b...

action.versusarthritis.org

Add your name 📢

Cuts to disability benefits would be catastrophic

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Alexis Gilbert @alexisme.bsky.social · 20/03/2025

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...

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Alexis Gilbert @alexisme.bsky.social · 20/03/2025

We need medical research funding for long covid and ME. We need NHS services that can manage symptoms and prescribe experimental medications. We need care, understanding and health professionals to be trained in ME. www.bbc.co.uk/news/article...

bbc.co.uk

Leeds doctor still 'bedbound' three years after Covid infection

Dr Alexis Gilbert was working in public health when he fell ill and now struggles with daily tasks.

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Alexis Gilbert @alexisme.bsky.social · 18/03/2025

Hidden behind the small sentence of needing 4 points on PIP now means you could need assistance to be able to get in or out of a bath or shower and still not qualify as disabled enough for this gov to help you with the increased cost of being disabled.

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Alexis Gilbert @alexisme.bsky.social · 16/03/2025

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.

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Atul Gawande @agawande.bsky.social · 13/03/2025

Nothing will kill more children than the ongoing decimation of CDC, NIH, and USAID work to lift vaccine uptake in the US and world. Child survival rose 75% in the last 50 years. Vaccines account for 40% of that. Measles vax alone was 60% of the benefit. www.thelancet.com/journals/lan...

thelancet.com

Contribution of vaccination to improved survival and health: modelling 50 years of the Expanded Programme on Immunization

Since 1974 substantial gains in childhood survival have occurred in every global region. We estimate that EPI has provided the single greatest contribution to improved infant survival over the past 50...

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Reposted by Alexis Gilbert

C.H. Romatowski @chromatowski.bsky.social · 13/03/2025

This is a very important piece and I am very grateful to Ben and MEAction for the moral leadership here. Everyone in the IACC advocacy space should read this.

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Alexis Gilbert @alexisme.bsky.social · 12/03/2025

Really glad the @meassociation.bsky.social chair has stepped down after thousands called for his resignation. Shame no apology though. We need strong bold leadership in this space to transform ME care and research. Especially for those most severely affected and everyone with ME and long COVID.

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Alexis Gilbert @alexisme.bsky.social · 02/03/2025

@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.

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Alexis Gilbert @alexisme.bsky.social · 02/03/2025

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Jamie 🏳️‍⚧️🏳️‍🌈 (they/them) @treesofreverie.bsky.social · 16/02/2025

Please take action to support Line. (She also has a new book coming out very soon!)

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