Kerry Newnham @Squashedhedgi

@sheilas34872235 @julierehmeyer Unfortunately it’s highly unlikely that doctors will have had good training on ME/CFS, let alone of severe ME and many have unhelpful beliefs

Well no, we are not a neighbouring country to Russia like Finland and Poland, fortunately. And isn’t welfare support vital about protecting life and wellbeing, in the way that warfare does? Welfare feeds, clothes and houses sick, unemployed, low paid and old people. I’m glad we do that.

@finnishgunners I doubt that this level of severity even makes it to discussion tables in advocacy. I don’t know if those who decide funding are even aware ;(

My friend with ME who lives in a nursing home recently divorced her husband and had to give up custody of her kids as well. She’s very severe and been sick for many years. She’s missing seeing her kids grow up. There are no limits how cruel this disease is. And nobody gives af.

If we get effective #LongCOVID treatments in the next decade, I will experience a mid-life crisis like no man has ever experienced. I can *promise* you that.

#MECFS can cause worse physical limitations than those seen in cancer, heart disease, and many other chronic illnesses. That surprises people who haven’t encountered ME/CFS firsthand. It doesn’t surprise anyone living with it, or caring for someone who is. The phrase “chronic fatigue” makes people think “tired.” The reality is a complex, multi-system illness that can leave previously healthy people unable to work, exercise, parent, socialise, or even get out of bed. I often speak to patients about who they were before they got sick: marathon runners who now use mobility scooters, mothers who can no longer care for their children, people whose lives have been completely upended. For too long, poor understanding of ME/CFS has meant patients are misdiagnosed, mismanaged, and sometimes pushed through approaches that make them worse. Graded exercise therapy is one example of what happens when post-exertional malaise is misunderstood. These patients deserve better: more research, more funding, properly educated clinicians, and care that understands the biology and complexity of the condition. Most of all, they deserve to be believed. The psychological framing of ME/CFS has been a real impediment to progress. There are many incredible advocates, clinicians, and researchers already doing this work, many of them patients themselves. We’re doing our small part, but changing this will take much more: advocacy, research, funding, education, and better systems of care.

Vindara Health @vindarahealth

23 hours ago

ME/CFS has some of the lowest quality-of-life scores of any chronic illness studied (Hvidberg 2015). On the SF-36 it scores ~27 vs cancer ~41. Lower means worse. A physiological illness this disabling should be taken seriously. For too long it hasn't been. Chart: @wecrunchme

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@newscientist It’s like how the medicine hypnotics briefly reenliven some minimal conscious, neurological disease And very severe m.e patients

Victims of vaginal mesh and epilepsy drug 'deserve justice', says patient commissioner trib.al/W4PpcjY

Netflix has a new movie coming out where a family gets trapped inside their own house for four years. They can’t get out, the windows repair themselves if they break them, and all I could think about was how are they going to have enough food 😂 I’d be worried about that before anything else.

@NIH What about ME/CFS? all money ($bs) is going to long covid, as ME/CFS funds have been allowed to fall to a shocking $8m, with severe & advanced ME, unlike the different stages of Multiple Sclerosis, never getting any NIH research funding at all.

@BBCNewsnight I hate Labour language of freebies and handouts and the over 65 bus pass has been widely used by my mother, no doubt helping the local economy widely As long as keeping traffic down.

Problems here. LC is approached as early intervention, prevention & management. ME/CFS is way beyond this &needs to be provided for as other potentially devastating neuro conditions, which have good services &minimal service stipulations, even FND. The MEA repeatedly fail the severely ill in their healthcare advocacy imo.

Grateful to have a relationship with an ME organization open, willing and in the process of shifting. We’re in talks of centering very severe in public facing advocacy. I believe this is the future for ME awareness.💙 This includes moving away from framing ME as a confusing, foggy disease, towards a clear message the public can digest. ME patients feel that shame, invalidation and disempowerment come with the diagnosis. We want to change that. In order for the diagnosis to come with deep respect, care, fear, honor and dignity, ME must be framed as serious and severe as it is in public-facing awareness. No more softening around the edges. Some may think that each stage should be equally represented, but we believe that when done right, the fear and respect the disease gains from focusing most on the sickest, benefits all patients the way it has in other diseases. Our goal is for friends and family to feel invested in protecting their ME patient. No more external pressure to try harder and exceed limits until patients deteriorate and may become severe or very severe because no one was informed. We believe in a future where patients are socially protected and encouraged to rest by friends and family. Patients have the right to be informed about the severity of their own condition. Families have the right to be educated about the worst outcome. And the public must know how profoundly severe and dangerous ME actually is. This creates external pressure on the systems that are responsible, and gives more power to advocates in important rooms. A disease where 25% are as sick as those on their deathbed, but chronically and without healthcare, cannot continue to be represented by its most mild state. It’s confusing to the public, inaccurate to the real severity spectrum, and fuels more confusion and neglect. This needs to change, now. That’s why I’m pushing for this change that so many others have recognized as a fundamental issue, too. I’m calling for this change to become the new standard in public-facing ME awareness. #MEawareness #verysevereME #mecfs

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Germany has launched a €500 million, 10-year research program: focused on ME/CFS, Long COVID, and other post-infectious diseases. Current status and next steps: mecfs-research.org/en/news-ndpe-u… Analysis of the first funding call: mecfs-research.org/en/news-ndpe-c…

OK. I'm looking at the Final Delivery Plan (FDP) now: gov.uk/government/pub… I'm going to throw out random thoughts in this thread...

The Sick Times @thesicktimes : "The U.K.’s plan for ME has failed us. Members of parliament must step up." by Nick Benton thesicktimes.org/2026/06/19/the… Screenshot from latest Science for ME weekly update #MEcfs #PwME

@_Lucibee I also think whilst the very severe =urgent priority, gvt has craftily syphoned it off as the only ones “who may” deserve medical care, Safe hospital & wider support, whereas I think the full 25% severe spectrum do, so sME=being treated minimally & unlike other neuro conditions

We have been listening to Gvt assurances since Jaqui smith - still around - stood in House of Commons assuring that 2002 chief medical officers report was groundbreaking recognition & progress & would lead to services & research …years later they’re still saying same. Without pressure, it’s easy for Gvt to cankick vs act.

@RosieDuffield1 ME/CFS is a burning medical scandal +a women’s rights issue. Dismissed as hysteria, then psycho-behavioural, harmful NHS management included GET (like sugar to diabetics) & left many 1000s much worse, incl. Children, with severe, sometimes irreversible disability. Harm covered up

Individual lords and ladies with ME/CFS sympathies can be contacted by patients in advance of this

Hazel @HazelOEW

4 weeks ago

From Action for ME – House of Lords debate on severe ME actionforme.org.uk/house-of-lords… “A House of Lords debate on the treatment of, and research into, severe myalgic encephalomyelitis will take place on Thursday 18 June 2026.” oneagleswings.me.uk #pwME #MECFS

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