I wrote this....😀 x.com/Moodscope/status/71352…

We sent an open letter to @WIRED in response to “The Painful Truth About Long Covid.” We are concerned it misrepresents ME/CFS and Long COVID by overemphasizing a few recovery stories and underrepresenting decades of biomedical research and patient impact. mecfssandiego.com/mecfs-advo…

We must be crystal clear about a few points. Long Covid is not a "poorly understood neuroimmune disorder" with no biomarkers. It is a widely studied biological medical condition. Pathology spanning basically all body systems is well documented, with damage in situ across organs

And those complications help us build new testable ideas, refine our models, and think outside the box. Science isnt an answer, its a method to systematically test ideas. Uncertainty is kind of our jam.

We’re a primary care practice in Vermont. We implemented a practice-wide protocol screening every patient at every encounter for recent SARS-CoV-2 infection history. What we’re observing in our panel is not consistent with a psychosomatic framework. We’re seeing measurable, objective increases in new-onset hypertension, acute cardiovascular events, new-onset allergic disease, and new-onset type 2 diabetes mellitus, all temporally correlated with infection history. These are not symptom reports. These are clinical findings.

⚠️After seeing the response from patients, clinicians and scientists, I think this needs to be said clearly: Re-promoting an article that has caused so much harm to the Long COVID community is not brave journalism. It is irresponsible. This article did not simply “open a difficult conversation.” It amplified a deeply damaging frame: that maybe patients are rejecting the uncomfortable truth that CBT, exercise and “mind-body” approaches are the way forward. But when you present a complex post-infectious disease through that lens, without properly separating psychological support from biological treatment, you are not helping patients. You are making their lives harder. These narratives do not stay inside an article. They reach families. They reach employers. They reach disability assessors. They reach doctors who already know very little about Long COVID. They reach people who are looking for an excuse to say: “maybe it is just anxiety,” “maybe you are afraid of exercise,” “maybe you are keeping yourself sick.” That has consequences. Social consequences. Medical consequences. Workplace consequences. Psychological consequences. Patients with Long COVID are already fighting disbelief, lack of biomarkers in routine care, lack of approved treatments, disability, isolation and medical neglect. Using their suffering to generate clicks while repackaging old psychosomatic narratives in modern “mind-body” language is not courageous. It is cruel. The problem is not talking about the nervous system. The problem is turning nervous system involvement into a story about beliefs, fear, trauma or patients refusing to accept recovery. The problem is using recovery anecdotes as if they establish causality. The problem is ignoring those who worsened with exercise. The problem is presenting PEM caution as dogma. The problem is being much more generous with “brain retraining” narratives than with the biomedical evidence already showing immune, vascular, autonomic, metabolic and muscular abnormalities in Long COVID. If a journalist wants to write about Long COVID, they have a responsibility to understand the history of harm done to post-infectious patients. Because this is not new. ME/CFS patients have lived this for decades. “Unexplained” became “psychological.” “Normal routine tests” became “nothing is wrong.” “Supportive care” became “cure.” “Exercise” became “rehabilitation,” even when patients were crashing. And now the same mistake is being repeated with Long COVID. Patients are not angry because they reject science. They are angry because they recognize the pattern. They have seen what happens when medicine turns biology it cannot yet measure into psychology. So no, this is not “a way forward.” A way forward would be stratification, biomarkers, mechanistic trials, antivirals, immunology, dysautonomia research, PEM-safe protocols, autoantibody studies, vascular biology, tissue persistence, metabolism and serious clinical phenotyping. A way forward would be listening to all patients, including those harmed by exercise and psychologizing narratives. A way forward would be scientific humility: admitting what we still do not know without turning unexplained biology into psychology. Not click-driven repetition of the same ideas that have already harmed post-infectious patients for decades.

This explains A LOT. Levinovitz's new book is called 'Demons by another name: Biology, belief & stories make us sick.' It is clear that brain retaining fits the argument that he is making: that what was deemed as demons are still making us sick & the mind can miracle cure 1/8

Also 1. Income tax is forecast to exceed welfare in the coming years, 2. The state pension makes up more than half of welfare, 3. Cuts to welfare have already been made, targeting disability, a smaller part of welfare, 4. Disability welfare was lower in 2025 than uncollected tax.

‼️⚠️Please read this until the end. A widely shared article has presented a deeply misleading view of Long COVID, suggesting once again that cognitive behavioral therapy, exercise, and “mind-body” approaches may be the uncomfortable truth patients refuse to accept. This needs to be challenged. Not because the nervous system does not matter. Not because psychological support cannot help. But because confusing support with cure, physiology with psychology, and heterogeneity with “it might be in your head” is exactly how medicine has harmed post-infectious patients for decades. There are articles about Long COVID that look like science journalism, but in reality they repackage, in modern language, a very old idea: if we do not fully understand a disease, maybe the problem is in the patient’s mind. And that is not science. That is repeating history. The article begins with a striking sentence: “There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness.” This may sound forceful, but it is a very misleading way of presenting the problem. The fact that there is still no drug specifically approved for Long COVID, or a single diagnostic test, does not mean that “nothing has been found.” It means that we are dealing with a heterogeneous disease, probably with several biological subgroups, and that medicine has not yet converted those findings into validated clinical tools. “No single diagnostic biomarker” is not the same as “no biology.” In just a few years, immunological, vascular, neurological, endocrine, and metabolic abnormalities have been described in subgroups of Long COVID patients: autonomic dysfunction, herpesvirus reactivations such as EBV/HHV-6, alterations in the cortisol axis, autoantibodies against GPCR receptors — including adrenergic and muscarinic receptors — persistent viral antigens, endothelial damage, muscle abnormalities after exertion, mitochondrial dysfunction, persistent inflammation, and differential immune changes. Is everything settled? No. Does that mean it is psychological? Also no. Science does not work like that. Multiple sclerosis did not stop existing before we had MRI. Many autoimmune diseases do not show up in routine blood tests. If a complete blood count, a basic biochemistry panel, or an X-ray comes back “normal, normal, normal,” that does not prove the absence of disease. It only proves that you are looking with inadequate tools. One of the article’s most serious mistakes is this: it confuses the absence of a simple clinical test with the absence of organic disease. And that mistake has caused harm for decades. The article also says: “Almost $2 billion and half a decade of international effort have yielded little more than hypotheses about micro blood clots and spike proteins and mitochondrial dysfunction.” No. That is not correct. A hypothesis is a provisional explanation. But when you compare patients and controls and find significant differences in muscle tissue, metabolism, response to exertion, immune biomarkers, viral antigens, autoantibodies, or vascular dysfunction, you are no longer talking about “little more than hypotheses.” You are talking about lines of biomedical evidence that still need to be organized, replicated, stratified, and translated into treatments. That is not scientific failure. That is research into a complex and new disease. 🔵Continued in the next post.👇🏻 (1/6)

The Heritage study funded by the government states the annual cost to the U.K. economy from #ME and #LongCovid exceeds £12 billion. That’s £32.8 million a day to the U.K. economy. Yesterday they pledged £4.75 million for research. This makes no economic nor humanitarian sense.

My old account is gone permanently due to inactivity for 30 days so I lost all my connections to the #LongCovid and #MECFS community. Need to get following everyone again…

Good morning @RestIsPolitics team, Will there be a post local elections podcast today? Many thanks.

Congratulations to @NickyProctor who just spoke most honestly and eloquently on BBC 4’s Feedback about the recent episode of Radical where Amal Rajan interviewed Suzanne O’Sullivan about her book and didn’t challenge her appalling views on #LongCovid. Thank you so much Nicky.

I think our benefits system should treat us all with dignity and respect, not suspicion. I added my name to this open letter to Pat McFadden. Will you join me to send a clear message to government? Add your name to help #StopTheStigma and #FixTheSystem. act.turn2us.org.uk/page/1799…

June 30 22… 🥳 I’m hugely relieved that DHSC is apparently publishing the Final Delivery Plan today. But it’s contemptuous that it is only being released as the long Summer Recess starts, depriving MPs of the opportunity for proper scrutiny. tinyurl.com/5zf6h89p

I’m glad the #infectedbloodscandal victims are finally getting somewhere,I’m glad the #PostOfficeScandal victims are finally getting somewhere,but when will the victims of the #GreatestMEdicalScandal finally get somewhere?!When will we get our justice,treatments,acknowledgment?!

Whatever people’s views about the concessions, surely everyone can see the process here is ALL wrong? Third Reading in eight days? A timetable like that diminishes the role of MPs in getting this legislation right, shuts out disabled people and puts too many at risk.

Just to be very clear, the amended and then amended again ‘pathways to work’ green paper remains an undemocratic travesty that will push 100,000s into worse precarity and cause huge mental and physical damage. It is vital that it is voted down. #TakingThePIP

What the hell just happened? What did they vote for? #Taking

NEW YouGov poll: Most Britons oppose cutting disability benefits. 🔹 53% oppose any cuts to support for disabled people who can work. 🔹 74% oppose cuts hitting those who can’t work. @UKLabour, whose side are you on? #TakingThePIP yougov.co.uk/politics/articl…

A lot of people end up in hospital, get iller, self-harm more and some die by suicide if they need to appeal. This is not hyperbole, I can (literally) send you the ‘prevention of future deaths’ reports if a MP. Most cases fail at MR and have to go to tribunal. That takes a year.