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Patients with severe ME at risk of starvation
  • We do know it is multisystemic. We don’t know if it is mediated by the CNS. But there are some extensive neurological problems. From the latest long COVID research, the leading theory is that, (I’ll say this in vague terms because I don’t want to sound too concrete as this is all hypothesis). Is that the Immune System, specifically T-Cells and B-cells, along with the complement system start working weirdly, we start seeing depletions dysregulations and abnormalities, which don’t happen in people who recover normally from COVID.

    Then we start seeing problems with oxidative stress, and biopsies show damaged mitochondria with numerous abnormalities. It is thought that the problem with the mitochondria, including the resulting increased oxidative stress, which we havn’t fully figured out. Starts causing neurological issues.

    In that sense, the leading theories is that it is multisystemic and immune mediated, but we obviously can’t rule out centrally medicated as we are still in such an early stage of research.

    I’m extremely curious what we’ll find out in the next couple decades :).

    There’s also the possibility that “M.E.”. Just like the “waste-bucket diagnosis” it’s predecessor “CFS” was, is more than one disease. Which would explain the heterogenity and diverse symptom presentations. But what most leading researchers seem to think is that it can take a progressive form (through PEM, don’t have time to explain what PEM is but it’s a defining feature and it can lead to permanent worsening of the disease), which can cause it to start producing more symptoms and affecting more body systems.

    BTW: I appreciate your curiousity and open-mindedness. Gives me some faith in the medical field. Most older colleagues who aren’t specialised in this they hear ME, CFS etc. and their mind goes oh like psychosomatic fibro type stuff and they refuse to read newer research because it’s a “waste of their time” or to genuinely listen to one of us explain. It’s quite shocking too see this kind of groupthink. The new fashion for these types of docs is to diagnose everything they can’t understand from weak limbs to seizures to M.E. type presentation as “Functional Neurological Disorder”, the literal DSM-5 successor of conversion disorder aka. hysteria. I’ve had a decent couple patients who ended up having rare-autoimmune diseases or even a simple MS type presentation, who lived multiple years with the FND misdiagnosis.

  • Patients with severe ME at risk of starvation
  • Yeah, it’s a strange one because it’s two different diseases in one.

    Since the 1980s, a disease characterised by fatigue and mostly thought to be caused by psychological factors has been called “chronic fatigue syndrome”.

    Since then, we (biomedical researchers) have found a far more specific disease within this broad category, often caused by viral infections, which we named Myalgic Encephalomyelitis, which is what an original outbreak was called in London, I believe.

    Anyhow, M.E. has very strict diagnostic criteria, requires some features that don’t present in any other illnesses, and requires a substantial decrease in physical functioning (>50%). Here’s the International Consensus Criteria for example. Interestingly, some cases present without the “main symptom” of fatigue, as defined by chronic fatigue syndrome. Most chronic fatigue syndrome diagnosis criteria, such as the Oxford Criteria, require only unexplained disabling fatigue. For M.E. subgroups defined by strict criteria, we also have clear physical abnormalities present, which show it is a physical disease and not psychosomatic.

    The problem arises because most of these discoveries were made in the past decade. So, nearly every trained doctor and medical professional who advises the government treats M.E. as a “psychosomatic fatigue disease,” which is really far from what it actually is. This has even led to a few high-profile cases of patients dying in care after being refused a feeding tube and dying of starvation, for example, since M.E. can cause fatal gastroparesis.

    In practice, patients are often treated for psychosomatic fatigue and even blamed for their symptoms, which is far from the actual case. Unfortunately, most of the English-speaking world is quite behind on this. The Mayo Clinic Proceedings is decent, but the CDC, NHS, and NIH are still holding onto some outdated beliefs. The real push has come from Austrian and German-speaking medicine (including Dutch), where some major discoveries have been made recently.

    We had a young patient tragically die in our care a couple of months ago; there seem to be some cases that are progressive.

    It’s similar to fibromyalgia in that it includes a lot of symptoms, is of unclear aetiology, and has often been treated as psychosomatic in the past. But, in practice, they are quite different diseases, with fibromyalgia being characterised by high levels of pain and thought to be a pain processing disorder with “central amplification.” Meanwhile, M.E. is mostly characterised by severe functional disability, and we have found different immune abnormalities and depletions, as well as problems with mitochondria and increased clotting. As of now, we don’t know how this all fits together. Something I find interesting is the only drug that has had some positive clinical trial results is an AIDS drug. Although none are approved for the disease as of now.

  • Patients with severe ME at risk of starvation

    Nearly 200 health professionals have written to the health secretary saying that patients with the illness are being left to ‘languish behind closed doors’

    The Times (UK)

    Doctors have said that NHS patients with myalgic encephalomyelitis (ME) risk starving to death because of unsafe and “unconscionable” standards of care.

    The letter calls for the government to take action to address the “serious patient safety concerns” for patients with ME, an illness which affects about 250,000 people in the UK.

    More than 200 health professionals including GPs, hospital consultants and nurses have written to Wes Streeting, the health secretary, saying that patients with the illness are being left to “languish behind closed doors” because specialist NHS services to provide safe care “do not exist”.

    ME, also known as chronic fatigue syndrome, is a complex neurological disorder that leads to symptoms including extreme exhaustion. Severe cases can be fatal, with patients bedridden and unable to eat or drink, but these patients currently “fall through the cracks” as there is no specialist NHS care provision.

    A letter signed by 202 doctors and NHS staff calls on ministers to convene an ME clinical task force providing “emergency specialist guidance in cases where patients are hospitalised”, as well as to commit to holding NHS trusts “accountable” for care.

    They write: “There is little access to truly specialist ME care or treatment within the NHS and paradoxically, the sicker a patient is, the less care they receive.

    “Even if doctors and healthcare professionals are knowledgeable and willing to treat patients, the infrastructure to provide safe and appropriate care does not exist.”

    […]

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    Microvascular and Immunometabolic features of Post-Exertional Malaise in Long COVID and ME/CFS
  • hmmm. To be honest, that’s an okay summary out of context, but it really fails to grasp the essence of the paper. It’s not wrong per say, but it adds irrelevant details while withholding key information. I wouldn’t rely on chatgpt’s summary for this.

  • Microvascular and Immunometabolic features of Post-Exertional Malaise in Long COVID and ME/CFS
  • There’s a feature of some Long COVID cases (~50%) which is also the defining feature of an illness called ME/CFS which has been caused by various forms of viral infections throughout history. (It is thought that a lot of Long COVID cases are ME/CFS). Anyways this feature is, Post-Exertional Malaise, a worsening of the illness after exertion beyond a certain threshold, which can entail hundreds of symptoms and be permanent.

    This paper is a review of some of the biomedical studies looking at what could possibly cause this, and finds there is repeated data of Microvascular (blood vessels) and immunometabolic (metabolic markers relating to immune function) differences with healthy controls.

    The leading hypotheses are that this is caused by mitochondrial dysfunction which is mediated by a dysregulated immune system.

    Some of my colleagues were co-authors on this paper. I’ll forward the feedback that it is jargony.

  • Microvascular and Immunometabolic features of Post-Exertional Malaise in Long COVID and ME/CFS
    link.springer.com Towards an understanding of physical activity-induced post-exertional malaise: Insights into microvascular alterations and immunometabolic interactions in post-COVID condition and myalgic encephalomyelitis/chronic fatigue syndrome - Infection

    Background A considerable number of patients who contracted SARS-CoV-2 are affected by persistent multi-systemic symptoms, referred to as Post-COVID Condition (PCC). Post-exertional malaise (PEM) has been recognized as one of the most frequent manifestations of PCC and is a diagnostic criterion of m...

    Towards an understanding of physical activity-induced post-exertional malaise: Insights into microvascular alterations and immunometabolic interactions in post-COVID condition and myalgic encephalomyelitis/chronic fatigue syndrome - Infection

    Background

    A considerable number of patients who contracted SARS-CoV-2 are affected by persistent multi-systemic symptoms, referred to as Post-COVID Condition (PCC). Post-exertional malaise (PEM) has been recognized as one of the most frequent manifestations of PCC and is a diagnostic criterion of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Yet, its underlying pathomechanisms remain poorly elucidated.

    Results

    Upon physical activity, affected patients exhibit a reduced systemic oxygen extraction and oxidative phosphorylation capacity. Accumulating evidence suggests that these are mediated by dysfunctions in mitochondrial capacities and microcirculation that are maintained by latent immune activation, conjointly impairing peripheral bioenergetics. Aggravating deficits in tissue perfusion and oxygen utilization during activities cause exertional intolerance that are frequently accompanied by tachycardia, dyspnea, early cessation of activity and elicit downstream metabolic effects. The accumulation of molecules such as lactate, reactive oxygen species or prostaglandins might trigger local and systemic immune activation. Subsequent intensification of bioenergetic inflexibilities, muscular ionic disturbances and modulation of central nervous system functions can lead to an exacerbation of existing pathologies and symptoms

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  • Cool yeah!

    I’m really passionate about my field. And a lot of medical professionals have prejudice or believe outdates stereotypes about it. So I’d love to make some posts about it if that’s okay?

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  • Hey I have a MD with residency in Neurology. Then I did a PhD in Neuroimmunology with board certification.

    I’m currently doing a hectic mix of teaching two med courses, working on Long COVID research (biomarkers), and working in an understaffed long COVID (now post-viral disease) clinic.

    Nice to meet you.

    I mostly lurk on lemmy, but that’s because I haven’t found a place I’d like to consistently contribute yet. Maybe here?

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  • Are octopus related to octopus? I mean technically they’re 100% related, but also they aren’t related as related implies not being. Depends on your interpretation.

  • 🐊🐓🦖

    If you’re confused: Birds are dinosaurs, crocodiles aren’t; note the “closest living relatives

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    Plague Poems
  • If you’re healthy.

    Sucks to be disabled or immunocompromised or at risk in any other way…

    Also, it’s still killing at much higher rates than the flu.

    And I won’t even start getting into Long COVID, which I’m currently researching. But it is a major crisis. 2-4 million people unable to work in the US because of it.

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  • FYI, you seem to be new here and seem not to be far-left. For your future enjoyment of lemmy, note that Lemmy.ML is a communist instance and therefore you may not like some of the content there.

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    Efficient distribution of labour my ass
  • Not really.

    There have been extensive sociological studies over this. Condition in a capitalist society and the promotion of the “homo economicus” model continually reinforces “greediness” and leads to people in capitalist societies being far “greedier” on average.

    It isn’t a natural thing, it is conditioned. Obviously everyone is greedy to an extent. But in anthropological examinations of different forms of societies, altruism scored far higher than greediness in non-capitalistic societies.

    Kate Raworth, Oxford Economist, wrote an excellent chapter about this in her book called “doughnut economics”. The chapter is “Nurture Human Nature”.

    The view that all humans are greedy and rational was promoted by Adam Smith and John Stuart Mill and is the precursing foundation of capitalism. But modern economics have rejected this view as it has been proven to be inaccurate, and increasingly rely on theoretical models built within behavioural economics.

  • Efficient distribution of labour my ass
  • Critical of capitalism ≠ Socialist

    There’s a lot of nuance you’re missing out on in this simplistic statement.

    I obviously oppose any authoritarian regime regardless of the economic system.

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    cross-posted from: https://mander.xyz/post/16143715

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