Kerry Newnham

@ompsychiatrist To improve relationships there must be acknowledgment of harm. I’m bedbound because drs “insisted” (that word shows how strongly &without caution this was) I push on &push thro. Now gvt &the medical est. cover gross harm up with words like “felt unseen” or “were underserved”

As a psychiatrist I see this regularly - patients with ME/CFS, Long COVID and hEDS who have real trauma from being dismissed and disbelieved by doctors for years. Their pain is genuine. I do have a problem though with the term 'clinician-associated traumatization' (here iatrogenic/Medical PTSD). It feels like it is making clinicians as 'the enemy'. A big part of the problem is the honest uncertainty these conditions create as they often lack clear biomarkers and are difficult to diagnose. We need more empathy and better training on both sides instead of blame.

@ompsychiatrist I don’t think patinets have trauma because their clinicians indicated uncertainty tho.

@bbclaurak Gvt spends 1500xs more (£3b per year min.) on loss of productivity, care &benefits for “ME/CFS, a serious, chronic…systemic disease” than it does on research (£2m/year), even tho the illness has no licensed treatments& keeps 200k (75% of patients) out of work, 25% house/bedbound

Excl - Alan Milburn reveals his report finds govt spends TWENTY FIVE times as much on benefits for young people as helping them find work - tells us it’s ‘shameful’

@BBCNews Gvt spends 1500xs more (£3b per year min.) on loss of productivity, care &benefits for “ME/CFS, a serious, chronic…systemic disease” than it does on research (£2m/year), even tho the illness has no licensed treatments& keeps 200k (75% of patients) out of work, 25% house/bedbound

Government spends 25 times more on benefits than jobs for young people, says Milburn bbc.in/4dF7vr3

@TheOldLostRoad @CaroleBruce17 Yes

@Squashedhedgi @CaroleBruce17 Sfme is that Science for ME?

Basic common sense: 1)Eradicate the name #CFS and let it be #ME without argument. 2)Change the NHS website on #ME. Let the educated Drs in ME write it. It’s the first port of call for everyone and it is totally inadequate in educating and informing people of the severity.

@x3r0gx4 @tink_ina But even more broadly, properly conveying the average disease burden isn’t well done and we have to undo the damage of Chronic Fatigue syndrome in the name,

@x3r0gx4 @tink_ina I agree, there’s tensions vs working with the establishment & its preferred framing; a broad emphasis, many US orgs lump m.e in with other conditions, so inevitably severe ME gets sidelined & maintaining a steady supply of newly ill members or doners & repesenting the most sick

POLL! ⬆️⬇️ Does the way our community and allies talk about #MECFS properly reflect how serious the disease is? Please see the comments for clarification.

@linmeitalks Wow 👊⬇️

Doesn’t have the minerals … this is what we can expect with a Green Party government.

@WorldMEAlliance Phrasing “if my Dr had been aware of the advice *now* recommended” lets past institutional med. failure/individual dismissal off hook Dr Ramsey & MEA long warning re exertion to avoid bad outcomes - but overridden/no caution applied >10s of 1000s with needless lasting disabilty

When ME/CFS patients are denied the care they deserve, the consequences are significant: => delayed diagnoses => harmful or inappropriate treatments => repeated experiences of stigma and disbelief => patients not warned of the risks of Post-Exertional Malaise (PEM) #EducateME

@DrBrittaniJ ME/CFS was grotesquely dismissed &mismanaged around the world. In my country UK, for 30 years patients were blamed &advice was push/ exercise. Disability rates =consequently high -75% can’t work, 25% =house/bedbound. NIH ME funds =just $7m/yr- 1% of YDL. This scandal needs focus

Millions of people got sick, then got sicker — and then stopped getting better. They came back with normal labs. Unremarkable imaging. And the quiet suggestion that maybe the problem wasn't biological. Long COVID didn't just introduce a new illness. It exposed how modern medicine responds when suffering can't yet be measured. Modern healthcare systems struggle with: - Illness without measurable biomarkers - Symptoms that fluctuate and defy categorization - Patients — especially women — whose suffering outpaces the science - Chronic complexity in a system built for acute resolution What Long COVID revealed was already there. Patients with ME/CFS, fibromyalgia, and dysautonomia (like POTS) had been describing this reality for decades. Long COVID just made it impossible to ignore. In this essay, I explore: - Why Long COVID exposed cracks in medicine that existed long before the pandemic - How "we can't explain this" quietly became "this may not be real" - Why chronically ill patients already knew this story - How a system built for acute disease failed millions with chronic illness - Why Long COVID's research funding is catastrophically misaligned with its actual harm - And what medicine still owes the patients it dismissed open.substack.com/pub/brittanija…

@WorldMEAlliance @ValeBodi If widespread harm is acknowledged, then the absence of any justice agenda from The main charities is astonishing

@WorldMEAlliance @ValeBodi Is it acknowledged that most severe/ advcanced ME is a consequence of medical failure to support — or active harm (eg GET)? That’s iatrogenic harm, as poorly managed diabetes would be. By not stating this, charities would be complicit in cover up, as well as burying key causation

ME/CFS is a seriously disabling condition impacting at least 67 million people. Medical education is lacking in most countries. Patients are denied the care they deserve. Consequences are significant. Share your story and the World ME Alliance's Medical Education Hub #EducateME

NHS Digital has introduced a SNOMED CT UK code for very severe ME/CFS. Until now, medical record codes existed only for ‘mild’, ‘moderate’, and ‘severe’ ME/CFS, but not ‘very severe’ ME/CFS. However, all still under "Chronic fatigue syndrome (disorder)"- tinyurl.com/y3wrh3ru

I know all too well from my own experience caring for our dear son, Ivan, that for millions of patients living with rare diseases and their families, time matters. Too often patients and their loved-ones face years of uncertainty, worry and heartache, with few or no treatment options available to them. Today’s announcement from @MHRAgovuk is an important and hopeful step towards changing that, while helping the UK become a powerhouse of drug development for genetic and rare diseases. By recognising the unique challenges of developing and delivering rare disease treatments to patients, and the need for an innovative, nimble and adaptable regulatory approach, the UK is showing real international leadership, building on the success of @GenomicsEngland and the 100k Genomes Project, both of which I launched as Prime Minister. Through my work with the @OHRareDisease Centre, we see every day the extraordinary potential of scientific innovation to transform lives. What patients and families need now is a system that can move with the same urgency as the science.

The rare disease therapies framework aims to address…challenges by introducing a single, flexible authorisation, the Investigational Marketing Authorisation... [to] allow controlled early access to a therapy while further clinical & real‑world evidence continues to be generated

@BBCMorningLive @DrOscarDuke Hi I wanted to share a 2 min video by a man with MS who is an ally to people with m.e (an illness grotesquely disserved, misnamed, mistreated and ignored) about the inappropriateness of framing this illness, M.E, as fatigue x.com/finnishgunners… Please watch Thank you!

🩺 @DrOscarDuke is back, separating fact from fiction in the health headlines. He explores if New Year’s resolutions could harm your health, the four diseases to watch in 2026, and whether walking backwards can help prevent a knee replacement. Watch 👉 bbc.in/morninglive

@rebeccaoco @ABrokenBattery @bhanlon15 @DrOscarDuke We don’t know the central disease mechanism that’s part of the problem but no excuse and “frustrating Fatigue” framing is part of why there’s been far too little research and resources

@ABrokenBattery @bhanlon15 @DrOscarDuke Trying to think of other illnesses that are named after a primary symptom rather than referencing the disease mechanism and am struggling…

BBC Morning Live covered the new £4.75m UK government funded #MEcfs DNA study yesterday, which will sequence 6,000 samples as part of the wider DecodeME project. Unfortunately @DrOscarDuke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.

@SoAmChr @ZacharyGrinDPT You don’t seem to understand that for m.e , as someone with Multiple Sclerosis recently said, effort is poison. Young people who want to live full lives need to learn they must not exert or their repeated post-exertional malaise will make them far more disabled

@SoAmChr @ZacharyGrinDPT An m.e diagnosis should be accompanied by immediate safety measures to warn about post-exertional malaise & real risk of deterioration & harm. Unfortunately most drs in UK haven’t done this & a lot of the “functional conditions” stuff starting with Wessely contrubuted to that

Why would a person need/want additional exploration when their symptoms have already been diagnosed? That doesn’t make any sense. If FND is a lazy diagnosis then so is Parkinson’s Disease, migraine, ME/CFS, Long Covid, and many other conditions that are clinically diagnosed.

@SoAmChr @ZacharyGrinDPT it would protect young busy people like me who started off able to attend college & work from deteriorating to a nightmarish state - unable to stand or eat, requiring care for all my needs & having to live in a dark room isolated. Diabetes care has same prevention of harm role

@Squashedhedgi @ZacharyGrinDPT How is warning about PEM "coherent, effective care"? It rarely results in remission or reversal of symptoms.