TiggaMom

Mother of a young adult son with severe ME/CFS & dysautonomia: housebound and 90% bed bound. I will not give up until a cure is found.

[Christoph Ströck @cstroeckw]

🚨 Major news for ME/CFS research:

WE&ME has launched a new research call worth over €1 million in total funding, supporting around 7 biomedical ME/CFS projects.

What makes this especially notable, alongside the substantial funding volume from a foundation in a small country, is the degree of patient involvement. Members of the Science for ME (@s4me_info) community were heavily involved in shaping the call and will also play a major role in the review and jury process, helping guide funding decisions themselves. At the same time, the process includes internationally respected ME/CFS experts whose judgment and expertise I trust deeply.

I may be wrong, but this could be one of the most patient-driven biomedical ME/CFS research funding calls of this scale to date.

A huge thank you to everyone involved: the patients, patient advocates, researchers, WE&ME, the WWTF team around Benjamin Missbach, and all partners who helped make this possible.

Most importantly, thank you to everyone who fundraised for or donated to WE&ME. This is where your money is going: directly into new biomedical ME/CFS research.

Please share as much as possible! 🙏

[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

[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

[Manuel Ruiz @manruipa]

‼️⚠️I sincerely appreciate that you acknowledged this mistake.

Recognizing errors publicly is not easy, and I respect that.

But I also think this is why I have to ask you to look again at the much bigger issue: the WIRED article itself.

Because the problem is not only one misread study. The broader framing of that article is already causing real harm.

I say this sincerely: I know there is a person behind every account, with their own intentions, limits, mistakes and blind spots. We can all get things wrong. I do not believe the right response is to destroy someone when they are willing to correct mistakes.

But the article needs correction.

Over the last few days, I have received comments and private messages from patients saying that family members, people around them, and even clinicians who do not understand Long COVID are now using this narrative against them.

They are being told that they are not recovering because they do not want to.
Because they are not exercising.
Because they are not doing psychological therapy.
Because they are “stuck” in the wrong mindset.

You may not fully realize the damage that kind of framing can do if you have not lived this disease closely.

For many patients, their environment had finally started to believe them because biomedical research was moving forward. Years of studies showing immune, vascular, autonomic, metabolic and muscular abnormalities were slowly helping people understand that this is a real organic disease.

And then a simple, attractive narrative appears again:

maybe it is mind-body.
maybe patients are afraid of exercise.
maybe recovery is being blocked by beliefs.

That kind of framing can erase years of progress in one family, one workplace, one clinic.

Because when a disease is complex and poorly understood, the easiest story is always the old one: maybe the problem is psychological.

ME/CFS patients have lived with this harm for decades. Many Long COVID patients are now experiencing the same thing.

And this pressure is not harmless.

Patients lose their health.
They lose their jobs.
They lose their social lives.
They lose their independence.

And then, when public narratives suggest that maybe they are not recovering because of their mindset, they can also lose the last thing they had left: being believed and supported.

That pressure can become unbearable.

Some patients end up taking their own lives because they feel abandoned, disbelieved and blamed for an illness they did not choose.

Those lives matter.

They matter as much as yours or mine.

And these patients deserve exactly the same dignity, seriousness and protection that we give to patients with any other recognized disease.

Today, nobody would tell a patient with multiple sclerosis that they remain ill because they do not want to recover, because they do not exercise enough, or because they have not done the right psychological therapy.

Nobody would frame MS as a failure of mindset just because fatigue, stress sensitivity, cognitive symptoms or depression can appear in the disease.

So why is this acceptable with Long COVID or ME/CFS?

This is not about rejecting psychological support.
It is not about denying that the nervous system is involved.
It is not about saying every recovery story is false.

It is about not confusing support with cure.
Not confusing subjective improvement with disease modification.
Not confusing heterogeneous biology with “it might be in your head.”
Not using recovery anecdotes to reframe a post-infectious disease in a way that patients will pay for socially, medically and personally.

I genuinely believe people can reconsider things. None of us has to know everything about every field. Mistakes happen.

But when a mistake has consequences for a vulnerable patient community, correction matters.

The same criticism I have made these days, I would gladly replace with support if you helped correct the framing and the harm caused by the article.

Patients deserve mechanisms.

[EndMalnutritioninME @MalnutritionME]

NICE guidance is to refer people with #severeME to a dietitian with a special interest in #ME and to monitor those at risk of malnutrition.
#DietitansWeek
#EndMalnutritionInME

[Prof. Akiko Iwasaki @VirusesImmunity]

'STORM' is a short documentary about Scott Hugo. A story of Long COVID's impact on his life and family - a reminder of what is at stake in research on Long COVID.

His resilience humbles me.

Please watch and share 🙏🏼

https://t.co/tN7B5wcq2I

[Christoph Ströck @cstroeckw]

ME/CFS,

is one condition I strongly encourage you to put on your radar: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). ME/CFS is one of the most severe and neglected chronic diseases that is not rare. In its worst forms, patients are completely bedridden, unable to tolerate light, sound, or human interaction. Quality of life is among the lowest of any illness.

Despite all this, research funding has historically been extremely low relative to disease burden, largely due to long-standing mischaracterization and bias, including the fact that many patients are women.

ME/CFS sits at the intersection of immunology, neurology, and metabolism, involving complex multi-system dysfunction. This is exactly the kind of problem where AI can have an outsized impact by integrating complex data and uncovering hidden leads.

Please take a closer look. Your involvement could make an extraordinary difference to many millions affected globally.
Thank you 🙏

[Jack | amatica health @JackHadfield14]

ME/CFS and Long COVID research often misses the sickest individuals. Many severe individuals are housebound or bedbound, so research that needs clinic visits can end up studying the people well enough to travel.

[EndMalnutritioninME @MalnutritionME]

People with #severeME need protection from malnutrition and dehydration. Ensure suitable food and drink is accessible for them at all times. Provide nutritional support such as soft foods, drinking aids, and tube feeding when necessary.
#MEAwarenessWeek
#EndMalnutritionInME

[Jack | amatica health @JackHadfield14]

It all makes no sense.

RECOVER had $1B and couldn’t set up a mobile phlebotomy unit

At Amatica we built a global phlebotomy and shipping network with no funding, and I believe we have enrolled more housebound and bedbound patients than RECOVER did. That shouldn’t be possible.

[Prof. Akiko Iwasaki @VirusesImmunity]

Here is the article if you don't have access 👇🏼

[LUCIΞN | DARKTIMES @LucienDorman]

𝗠𝗲𝗱𝗶𝗰𝗶𝗻𝗲 𝗦𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗶𝘁𝘆 𝗶𝗻 𝗠𝗘/𝗖𝗙𝗦 𝗮𝗻𝗱 𝗟𝗼𝗻𝗴 𝗖𝗢𝗩𝗜𝗗 💉🤢

I wanted to share a quick update on the medicine-sensitivity Discord I’ve been building.

We’re now at 105 members and beginning to see some interesting early convergence in the reports. A recurring pattern is that many patients with severe medication sensitivity also appear to have marked sensory sensitivity, with screen intolerance showing up very frequently.

A lot of the anecdotal data is aligning closely with my own experience, which makes me think we may be looking at a recognizable clinical subgroup rather than a collection of isolated adverse reactions. No major breakthroughs yet, but the server is becoming a useful place to collate patient reports, compare reaction patterns, and track how highly sensitive ME/CFS patients respond to common interventions such as LDN, Abilify, benzodiazepines, and other frequently recommended treatments.

One important point is that this subgroup may be underrepresented in online discussion, precisely because many of the most affected patients have severe screen, sensory, and cognitive intolerance. So if anyone is interested in helping build momentum, starting discussions, contributing research, sharing observations, or simply helping connect patterns, please feel free to jump in.

I wanted to drop the invite here for anyone interested. Feel free to join, share with friends, or pass it along to anyone who may benefit.

Thanks guys. Join 👇
https://t.co/5okeo3ZfHm

[TiggaMom @MomTigga]

@elle_carnitine @Naomi_D_Harvey We use a cut off pool noodle to rest his head on inside the inflatable bath thing. Plastic sheet on the bed covered with a towel. Bucket of water and large jug. Works well.

[TiggaMom @MomTigga]

@renamemecfs Please don’t. There is a strong chance a treatment/cure is around the corner. The suffering is no doubt beyond comprehension, but there is so much happening right now that could bring answers soon.

[Jumpei Ito @jampei2]

By rapidly quantifying interferon-stimulated genes (ISGs) expression across 220k RNA-seq data sets from diverse animals, we comprehensively identified “hidden viral infections” in wildlife and livestock (1/n).
https://t.co/K6Yu47dhCJ

[Katy B @KatyBruce108]

For various reasons, it seems to be getting harder to find other #pwME in our feeds here on TwXtter.
If you can, do keep adding the # s when you tweet - #pwME #ME #MEAwareness #MEcfs etc,
so we can find each other easily & with the least amount hassle & effort.
💙👋🙋💙

[Michal Tal, PhD @ImmunoFever]

My Stratton lecture is available online. Get a sneak peek at the MAESTRO study interim analysis results and hear about what we can learn when we MEASURE absolutely everything! https://t.co/0ljh917hnz I go on at min. 23:33 and around min. 57 there's a Q&A with all the speakers.

[TiggaMom @MomTigga]

@pausedME Thank you. Please know that your input is exceptionally valuable. Really appreciate you sharing.

[TiggaMom @MomTigga]

@JackHadfield14 @NovaSupport Thank you. Very clear and helpful.

[Stefan Arce ME/CFS @stefan_arce]

I have very severe ME/CFS and dysautonomia.

My J-tube has displaced. I am severely malnourished, immobile, and have pressure ulcers.

My parents are overwhelmed and want to take me to IMSS emergency immediately. For a very severe ME patient, that environment (noise, lights, smells, waiting rooms, infections) can trigger catastrophic neurological collapse.

I am not refusing treatment.

I am asking for treatment done correctly:

• Low stimulation
• Minimal handling
• Controlled environment
• Procedural sedation only if needed
• Fast tube replacement
• Return home as soon as possible

Palliative sedation is being presented as my only option.

It is not.

This is a displaced tube in a neurologically fragile body — not a terminal cancer diagnosis.

I want to live.

If anyone has experience with severe ME hospital protocols or knows how to advocate in situations like this, please respond immediately.