Alexis Gilbert

Referencing excellent work by @longcovidsupport.bsky.social @longcovidkids.bsky.social @decodemestudy.bsky.social @batemanhornecenter.bsky.social

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

“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/...

A screenshot of the linked article

“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/...

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

“…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

“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/...

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.

Today is Severe ME day. Please take a moment to understand our reality. ❤️‍🩹

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...

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...

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.

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
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Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s

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...

Scientists find link between genes and ME/chronic fatigue syndrome

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’.

(2/2)

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.

(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

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

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.

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

See next tweet in the thread for answer!

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.”

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.

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/

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

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

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.

NICE UK best practice guidance based on an evidence review.

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

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.

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...

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.

Controversies related to ME/CFS - Wikipedia

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...

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.

(((((((((Myalgic Encephalomyelitis) OR (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)) OR (ME/CFS)) OR (Fatigue Syndrome, Chronic)) OR (Postviral Fatigue Syndrome)) OR (Systemic Exertion Intoler... (((((((((Myalgic Encephalomyelitis) OR (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)) OR (ME/CFS)) OR (Fatigue Syndrome, Chronic)) OR (Postviral Fatigue Syndrome)) OR (Systemic Exertion Intoler...

We don't understand everything about how M.E. works yet, but we know enough from the thousands of research papers published that this is a biologically not psychologically caused illness.

pubmed.ncbi.nlm.nih.gov/searches/730...

www.meaction.net/learn/what-i...

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot

Instead of managing symptoms and supporting patients, some doctors continue to push debunked exercise programmes and cognitive therapy on patients.

www.theguardian.com/commentisfre...

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...

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...

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.

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