Lene Frank

ME-patient, WHO ME G93.3, siden 1997. Førtidspensionist fra 2011. Uddannet afspændingspædagog. Tidl. underviser i fødselsforberedelse og bla fysisk genoptræning

[Carole Bruce @CaroleBruce17]

Five deaths (that we know of) in one week from #ME and yet the psychiatrists still dominate the medical and social attitude that our symptoms are ‘all in our heads’. Where is the outrage from the healthy? Anybody’s health can flip in a moment but denial is more comfortable.

[Adam @ABrokenBattery]

“We don’t know how to cure many conditions, but that doesn’t mean that this condition [ME/CFS] doesn’t exist… we don’t know how to treat probably 90% of neurological conditions.”

Dr Tarek Gaber, interview at the #MECFS Clinic in Wigan (2024).

[Billy Hanlon @bhanlon15]

Health Rising: 'Hitting the Target? ME/CFS and long COVID T-Cell Researchers on Uncovering the Precise Drivers of the Illnesses'

https://t.co/TlruuRXVoE

[Adam @ABrokenBattery]

Why #MECFS is so misunderstood. A quick history lesson from neurological in the 60s to being reframed as psychological and fear of exercise. Treatments were only withdrawn recently after patients reported harm.

Clip from Zoe Madden-Smith’s award-winning RE:News documentary

[Amy Rochlin @amyrochlin]

A few things come to mind.

One of the most important lessons from modern medicine is that progress follows biology.

Patients with diabetes aren't asked to prove their illness through symptom questionnaires alone. We measure glucose metabolism.

No one diagnoses a heart attack based solely on fatigue and chest discomfort. We measure biomarkers, blood flow, and tissue injury.

We don't debate whether skin cancer exists because a patient reports a suspicious mole. We examine the tissue, study the biology, and make a diagnosis.

The path to treatment has always been the same: understand the biology.

That is why I find the comparison in this paper between complex disorders and multiple sclerosis compelling.

The transformation of multiple sclerosis did not occur because people became more sympathetic to patients.

It happened because researchers developed tools that allowed them to see the disease.

MRI revealed lesions. Immune profiling uncovered underlying mechanisms. Biomarkers provided objective measures of disease activity.

Biology changed everything.

Complex disorders are in the midst of the same scientific ambition.

The future is not asking physicians, researchers, policymakers, or society to simply believe patients more.

The future is generating a level of biological understanding that makes these diseases impossible to ignore.

In this paper there are excellent highlights for deeper testing and I agree, we should be investing aggressively in:
• 7T MRI to visualize the brainstem and autonomic control networks•
• PET imaging to understand neuroimmune activity and neuroinflammation
• Advanced immune profiling to characterize the cellular and molecular drivers of disease
• Cerebral blood flow measurements to quantify physiologic dysfunction
• Longitudinal studies that connect biological changes to patient outcomes (oh how we need these).
• I'd also add AI-driven research to add speed and depth

These technologies and approaches give us the opportunity to move beyond broad symptom categories and begin identifying the biological pathways that drive illness.

Medicine advances because better biology leads to better diagnostics. Better diagnostics lead to better clinical trials. Better clinical trials lead to better treatments. Better treatments lead to health.

That is how we transformed diseases like multiple sclerosis.

That is how we transformed cancer.

That is how we transformed cardiovascular disease.

And that is how we will transform and treat complex neuroimmune disorders.

When patients ask me why research matters, when all they need is better care: This is why.

Better science drives better care.

And the exciting part is that we can do this now.

We have technologies that previous generations of researchers could only dream of. We have advanced imaging. We have immune profiling. We have AI. We have wearable devices. We have large clinical datasets. We have unprecedented computing power.

The challenge is bringing the data, technologies, researchers, clinicians, and patients together in ways that allow us to see the biology more clearly.

That is why expert collaboration matters.

No single lab, institution, specialty, or dataset will solve these conditions alone. Progress will come from connecting expertise across neuroscience, immunology, autonomics, imaging, computational biology, and clinical medicine.

The opportunity is here. @CODA_research is following a specific path: finding answers for patients.

CODA CCD unites 8 experts in the field and then will go out to 50 more experts on the best ways to evaluate and treat craniocervical dysfunction.

Immune studies (Anktiva and Inspiritol) are based on specific exploration of biomarkers, subgroups.

Vagus nerve modulation shows huge promise for RA - how do we bring it to our diseases.

AI data specialists - both internal and our partners - are using multiomics and clinical data to subtype and get a clearer picture of underlying biology.

This is just a small amount of where we're going with our partners.

And we partner with as many leading scientists and other foundations - we believe we are stronger together.

One of the greatest moments we had this year, was coming together with @actionforme Schmidt Initiative for Long COVID, @PlzSolveCFS @weandmecfs to get a massive @DecodeMEstudy long-read genomics study launched - with an amazing ￡4.5 invested by th UK govt because of this partnership. That wasn't my idea - it was @SonyaChowdhury and team's brilliant idea and we were glad to be a part of it.

I have a child in this space and I talk to patients every single day who are suffering beyond measure. I know patients can't wait for better care.

The more we work together, the more experts engage, the better we can use science to accelerate real progress and the more people we can help. Quickly.

Thank you @dysclinic et. al. for the paper. And @BrainInflCollab for calling it out for me this morning.

https://t.co/Jr6CjnotEl

[Hannah Davis @ahandvanish]

#LongCovid has not decreased from 2020-2024.

Prevalence is 13-23% of US population, increasing 0.4%-1.5% every 3 months.

Incidence was 10-29%, but began increasing in 2023.

"These findings indicate an accumulating rather than resolving disease burden." https://t.co/SZGm2NFkg0

[Adam @ABrokenBattery]

Dr Ranj explains the four symptoms required for a diagnosis of ME/CFS: debilitating fatigue, post-exertional malaise (PEM), sleep disturbance and cognitive difficulties.

If you’ve had these symptoms for over three months, speak to your GP.

Clip from BBC Morning Live.

[Brain Inflammation Collaborative @BrainInflCollab]

A recent review proposes integrating POTS, ME/CFS, and Long COVID into the neuroimmunology subspecialty. Here is their compelling case.

\ Overlapping Drivers of Disease:
The authors outline several major overlapping pathophysiological mechanisms shared by POTS, ME/CFS, and Long COVID. This includes:
1. Autonomic Dysfunction (Dysautonomia)
2. Mitochondrial Dysfunction
3. Cerebral Hypoperfusion
4. Immune Dysregulation
5. Neuroinflammation
6. Autoimmunity

\ The Harm of Psychiatric Misdiagnoses:
For decades, patients have been wrongly labeled with "functional neurological disorder," anxiety, or somatization because routine tests often look normal.

\ A Call for Better Diagnostics:
Researchers and clinicians urgently need advanced tools such as:
- 7T MRIs
- Targeted PET scans
- Autoantibody and cytokine panels
- Comprehensive autonomic function testing

Routine tests are simply not enough.

\ The Authors’ Core Proposal:
Classify and treat POTS, ME/CFS, and Long COVID as neuroimmune disorders under the subspecialty of neuroimmunology.

This shift would:
• Improve clinical care
• Accelerate research
• Enable effective neurotherapeutics (including repurposed immunomodulatory and anti-inflammatory treatments)

Thanks, Dysautonomia Clinic, for the awesome paper!

#MECFS #POTS #LONGCOVID #PASC

Read more here: https://t.co/QD2SJuwQu3

[Carmen Scheibenbogen @C_Scheibenbogen]

The presentations from the 2026 ME/CFS Conference will soon be available to watch via the @MECFSResearch Foundation @JoergHeydecke.

Already available with presentation slides in English: a brief summary of the treatment studies.

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

Apologies if this has already been pointed out but, last year, as predicted by patients, all three of the NIH RECOVER Initiative's large-scale brain retraining trials failed to improve cognition in #LongCovid patients. #MECFS
https://t.co/F6Gdz3XhUi

[Adam @ABrokenBattery]

“Perhaps the most damaging experience of all though is not simply the illness itself. It is not being believed.”

MSP Morven-May MacCallum speaking about her experience of Lyme disease and other chronic illnesses, including #MECFS, in the Scottish Parliament.

[Lene Frank @LeneFrank]

@VibekeVind Troede egentlig, det blev Monika Rubin, da hun er læge, og Ida Auken er præst. Men det har vel været led i en kabale, der skulle gå op.
Det havde måske været en fordel, for os med ME, med en læge, der kender sundhedsystemet, men måske netop ikke ?

[Lene Frank @LeneFrank]

@VibekeVind Ja, håbede på en stærk og klog sundhedsminister, Vibeke👆... og det har vi vist fået 👍
Om hun kender til ME-problematikken vides vel ikke, men det kommer hun til.

[Adam @ABrokenBattery]

DecodeME has received £4.75M in UK government funding to sequence 6,000 DNA samples. This is phase 2 of a wider project, to sequence 9,000 #MECFS samples and 9,000 #LongCovid samples.

Full article in The Times:
https://t.co/fCD2oMMqMZ

[Anil van der Zee © @AnilvanderZee]

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME.

It is one of the only places where the sickest patients can receive specialised care.

We need this everywhere!!

#pwme #myalgicE #millionsmissing #severeME

[Billy Hanlon @bhanlon15]

WBUR: 'The scope of long COVID is bigger than we think, Mass. researchers say'

“I think Long Covid is a serious national and global problem that demands attention from governments and international bodies" - Dr. Ziyad Al-Aly

https://t.co/qzQrTDDsB8

[Lene Frank @LeneFrank]

@VibekeVind @LarsIgum Ja, det virker nærmest som en indforstået pagt ikke at give sig af med post-viral (kronisk) sygdom 🤔
Når det ignoreres af sundhedmyndigheder, sundhedsvæsen, medier osv. - findes det ikke og noget, som patienter indbilder sig.
Så det må FL tage sig af.

[Vibeke Vind @VibekeVind]

Et bidrag til den forhøjede forekomst af langtidssygemeldinger kommer fra Long-covid. Alligevel bliver det ikke nævnt med et ord i Danmark.
#sundpol #dkpol #dkmedier

[Vibeke Vind @VibekeVind]

@tv2newsdk Det store problem er at funktionel lidelse ikke er en anerkendt diagnose i ICD-11, som Danmark er forpligtet til at indføre.
Læs Peter La Cours kritik af den danske konstruktion “funktionel lidelse”:
https://t.co/s3HfirVZBa