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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Reposted by Alexis Gilbert

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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Alexis Gilbert @alexisme.bsky.social · 04/08/2025

I agree - many psychiatric diagnoses have clear neurological drivers. I think in 100 years time we will have determined the neurological basis for just about all of psychiatry - I'm a 'reductive materialist' when it comes to neuroscience and philosophy of science

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

I’m sorry you’re dealing with multiple illnesses. It’s really hard. I focused on the experience of ME here but unfortunately many of these issues will be common to other chronic illnesses today too - especially those neglected by medical science funding.

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

See next tweet in the thread for answer!

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Reposted by Alexis Gilbert

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

If you got this far Thank you. Thank you for having an open mind and for listening and wanting to help to make the world a better place Check out linktr.ee/alexisme for links and www.instagram.com/alexis___me?... for highlights and posts on ME, long Covid and living with a chronic illness.

instagram.com

Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.

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

So what can you do? If you care: • learn more from reliable sources (see caption) • advocate for better healthcare and policies • advocate for research funding and clinical trials • mutual aid (check my 'Direct giving' highlight on IG www.instagram.com/s/aGlnaGxpZ2... • donate to research omf.ngo/

instagram.com

Direct giving = @alexis___me

See Instagram 'Direct giving' highlights from Alexis (@alexis___me)

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

So what can you do? Friend/family: • ask the person what they need from you. Accept this and deliver it. • educate yourself on the science of ME and best care practices. • NEVER encourage them to "push through" • support them to rest • be their advocate with drs More: www.meandmore.net/resources

meandmore.net

Resources — ME and more

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

So what can you do? Health professional: • keep up to date on best practice guidelines Bit.ly/nice206 • respect patient's experiences and knowledge of their own condition • offer symptom management and chronic illness support • consider evidence based off license treatments bit.ly/BHC-ME

bit.ly

Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE

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

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.

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

The science says: "Do not offer people with ME/CFS: • any therapy based on physical activity or exercise as a cure for ME/CFS" Para 1.11.14 - NICE NG 206 UK GUIDANCE - bit.ly/nice206

bit.ly

Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE

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

People with M.E. deserve appropriate holistic medical care which includes symptom management, off-licence treatments based on good evidence and psychological support to deal with the impact of chronic illness. Eg batemanhornecenter.org/providers/me...

batemanhornecenter.org

ME/CF Healthcare Professionals

BHC breaks down the diagnostic criteria for ME/CFS and provides videos, handouts, and health management guidance geared toward healthcare professionals.

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

For many people with M.E. the neglect goes further and becomes abuse and gaslighting. I have friends who have been held against their will in psychiatric facilities and abused by family for "making up" [their carers words] their illness.

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

Imagine for a moment, NOT being treated for your severe illness but actively being pushed to do something that's harmful and making you worse, whilst also not getting the psychological support you need for your trauma. This is the reality for many people with M.E. en.wikipedia.org/wiki/Controv...

en.wikipedia.org

Controversies related to ME/CFS - Wikipedia

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

Looking after the mental health of people with chronic illness is vital and this has suffered hugely from the misdiagnosis of their underlying disease as a psychological problem.

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

The combination of bad science and misogyny pushed the idea of chronic fatigue syndrome in the 1980s and 1990s to replace M.E. Rooted in the incorrect idea that ME/CFS had a psychological cause. theconversation.com/ignored-blam... pmc.ncbi.nlm.nih.gov/articles/PMC...

pmc.ncbi.nlm.nih.gov

Royal Free Epidemic of 1955: A Reconsideration

From a re-analysis of the case notes of patients with Royal Free disease it is concluded that there is little evidence of an organic disease affecting the central nervous system and that epidemic hyst...

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

Despite overwhelming scientific evidence, there are still many doctors who treat M.E. (Myalgic Encephalomyelitis) as psychological. This is morally, ethically and scientifically wrong. bit.ly/goodmed24

bit.ly

Good medical practice 2024

We’ve published an updated version of Good medical practice. This sets out the standards of care and behaviour expected of all doctors, physician associates and anaesthesia associates.

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

Thankfully for most of these illnesses understanding, attitudes and treatments have moved on and people do get the care they need. But that's not the case for everyone.

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

Science showed that each of these illnesses has an underlying biological cause and the psychological symptoms are an impact of the disease not the cause.

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

Answer: Doctors thought they were caused by emotions and thoughts and patients suffered instead of getting appropriate treatment. Source: DSM-1, American Psychiatric Association. archive.org/details/dsm-1

archive.org

DSM-1 Full PDF : US Army : Free Download, Borrow, and Streaming : Internet Archive

DIAGNOSTIC AND STATISTICAL MANUAL MENTAL DISORDERSCollected and prepared by the US Navy (1944), US Army (1945)and adopted by American Psychiatric ...

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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

Sorry only just saw this. Bnf.nice.org.uk another helpful source of info on drug interactions. There are some SSRIs which don’t interact with Ivabradine/have lower risk interactions.

bnf.nice.org.uk

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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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Reposted by Alexis Gilbert

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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