ME/CFS (kbin)

We have been given the green light for our new scan tracking leukocyte infiltration of the brain. We can now run the first-ever patient! I wanted to share the exciting news - Jarred Younger.

Jarred Younger's research uses new techniques to study the brain inflammation present in MECFS. If he finds leucocytes in the brains of pwMECFS that would mean they had crossed the brain blood barrier.

Abstract: Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness. In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS.

We're in the middle of a plague

[Click to listen to the article, and support the Canary]

The NHS killed Sophia Mirza on 15 November 2005. Sophia lived with myalgic encephalomyelitis (ME/CFS). In July 2003, psychiatrists got cops to smash the door into Sophia’s home down and forcibly take her to a secure psychiatric unit, where she was imprisoned against her wishes for two weeks before a tribunal ordered her release. This ultimately led to her death.

In January 2024, Olivia Jane Mott travelled from the UK to Dignitas in Switzerland to end her own life. She lived with ME. On 27 March 2024, Lucy Mayhew died. She lived with ME.

Right now, Millie McAinsh is dying in an NHS hospital because doctors don’t believe her illness is real. They previously sectioned her under the Mental Health Act, enforced Deprivation of Liberty Safeguarding (DoLS) measures on her, and are forcing her to have treatment she doesn’t want. Millie lives with ME. So does Karen Gordon – in an almost identical situation to Millie.

So, nearly 20 years after the NHS killed Sophia, people living with ME are still dying while the state either lets them or actively brings it about. The obvious question is why? Well, the Canary has extensively documented the answer to that.

However, the less obvious but perhaps more necessary question is why are we allowing this to happen?

ME/CFS: inaction, inaction, inaction

The answer to that is a complex melting pot of issues, including (but not limited to):

• ME/CFS is still poorly misunderstood – or rather, made out by the medical profession, the state, and media to be.

• The ME community exists in the most part of people online who are a) clued-up on the issues, and b) have a diagnosis in the first place. Read this about fibromyalgia and ME diagnoses.

• People have their own political views which play into how they respond to situations of injustice, abuse, and discrimination. We’re a mixed bag of left, right, and no wing.

• The full force of the media and state has been consistently putting its boot on the neck of the ME community.

• Charities and Disabled People’s Organisations (DPOs) within the community tend to work to their own agendas – not collectively.
  But one of the most pressing one is the community’s inability, and in some cases unwillingness, to protest.

Where are the protests? Where are the occupations?

Campaigning, protesting, and taking direct action have throughout history been the way ordinary people have brought about change. Be under no illusions: it is NOT politicians, charities, or the state who do – and even when they have, it’s because people like you and me have forced them to.

However, this has always been the circle that (until this point) cannot be squared: severely chronically ill and disabled people cannot easily protest. They’re bodies often won’t let them. So, they need allies and advocates to do it for them.

Yet where are the protests from non-chronically ill allies?

I seem to recall some shoes being placed outside the Department of Health and the BBC a few years ago (I’m being wry – I was there). Otherwise, the ME community doesn’t protest – unlike nearly every other marginalised group in the UK.

For example, me and my partner Nicola were literally blocking one of the main arterial roads into Westminster with other disabled people a few weeks ago. It was over benefit-related deaths. Cops kettled disabled wheelchair users and threatened people with arrest.

Yet that pales in comparison to the tens of thousands of people who have died under the Department for Work and Pensions (DWP) regime; one the UN said caused “grave” and “systematic” violations of chronically ill and disabled people’s human rights.

ME/CFS: we literally have nothing to lose

So, why has the ME community not embraced direct action and protest as part of its strategy?

I can’t safely answer that. That’s for all of us to reflect on. I think there’s elements of class within this. Many marginalised communities are also socioeconomically marginalised by the state. That is, they’re poor in every sense. Specifically, not only does the state marginalise you for, say, your ethnicity or disability, it also marginalises you economically.

As American writer and civil rights activist James Baldwin summed up:

The most dangerous creation of any society is the man who has nothing to lose.

Black people, disabled people, refugees, non-working people all have the least to lose – therefore, civil disobedience isn’t as daunting.

The ME community needs to fully recognise its own marginalisation and take that to its very core. Millie is a case in point for us all: she has little to lose, now – and things can’t get much worse.

Shut up and sit down

There’s another element to this lack of protest and direct action.

Regarding Millie, I keep seeing comments, and am also being told privately by quite well-known figures in the ME community, that:

Things are going on behind the scenes.

But:

You shouldn’t really do ‘x, y, z’ as it will make the situation worse for Millie.

And:

The ME/CFS charities are working with Millie’s family.

If I hear another comment along these lines I’ll scream.

Whatever the ME charities and those in the self-appointed (which they are, unless people with ME took a vote on it that I missed) upper echelons of the community have been doing since the NHS killed Sophia on 15 November 2005 HAS NOT WORKED. If it had, Millie and Karen would not be in the situation they’re in.

Olivia would still be alive.

Lucy would still be alive.

And Merryn, Maeve, and Kara Jane would still be alive.

Nothing has worked in 20 years.

Labour MP Debbie Abrahams once said in parliament regarding the tens of thousands of disabled people that have died on the DWP’s watch:

Does the minister think that it is unacceptable that any government policy should cause their citizens to take their own life or to die? If he does, should there not be a moratorium on this policy until it is got right? Surely one death is one too many.

Why has the ME community for decades accepted so many deaths of its own?

It is past time that the ME community realised that we are perpetually going round in circles, doing the same things over and over again – and that they are not working.

It is also past time that the ME community stopped allowing certain gatekeepers to govern how it conducts itself and how it responds to the abuse medical professionals and the state inflicts on its members; abuse that is not inflicted on those same gatekeepers.

And it is past time that the ME community stopped putting its faith in charities who take hundreds of thousands – sometimes millions – of pounds every year in donations and yet demonstrably achieve absolutely nothing with it.

That is, the ME community and its allies in other chronic illness communities like long Covid need to take matters into their own hands. Enough really is enough this time.

Get our acts together, or we are as good as dead

Larry Kramer was the founder of direct action group AIDS Coalition to Unleash Power (ACT UP). Him and his supporters advocated for disruptive civil disobedience in the face of the HIV/AIDS crisis that was sweeping the US in the 1980s.

ACT UP members repeatedly got arrested for actions like blocking roads. However, Kramer and his group changed the course of HIV/AIDS: how it was viewed by the public, how it was represented by the media, and ultimately how it was treated by medical professionals.

He once said:

I was trying to make people united and angry. I was known as the angriest man in the world, mainly because I discovered that anger got you further than being nice. And when we started to break through in the media, I was better TV than someone who was nice.

The ME community has been “nice” for far too long. It’s not like we’re complaining about potholes, tree-felling, or London’s ULEZ scheme. We’re fighting against the state-run health service literally killing members of our community. Yet, all those three other examples I gave have seen bigger – and often more civilly-disobedient – protests than the ME community has ever engaged in.

Crucially, though, Kramer famously screamed in the middle of a meeting of AIDS activists who were arguing among themselves and utterly disorganised:

Plague! We are in the middle of a plague! And you behave like this! Plague! 40 million infected people is a plague! Until we get our acts together, all of us, we are as good as dead.

So, get their act together they did.

The ME/CFS community needs it’s own ‘plague’ moment

The ME community’s “plague” moment should have been Sophia’s killing in 2005.

But it wasn’t.

It should have happened at the start of the coronavirus (Covid-19) pandemic.

But it didn’t.

It should have been Merryn’s, Maeve’s, Kara Jane’s, and every other person with ME’s deaths because of how the system has treated them.

But it wasn’t.

So, I ask you this: is it going to take the NHS killing Millie for the ME community to have its “plague” moment and finally ‘get its act together’? Because that cannot happen.

Millie’s story – ending with her returning home to safety – must be a watershed moment for all our sakes. It must be a moment where we as a community stare at ourselves in a mirror until our eyes collectively bleed and ask ourselves whether what we are, and have been, doing is right – and if we should continue with it.

And I can tell you now: the answer to those questions is ‘no’.

WASHINGTON, April 9 – Sen. Bernie Sanders (I-Vt.), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, today released a draft legislative proposal to address the Long COVID crisis that is negatively impacting the health of some 22 million Americans.

Before formally introducing this legislation in the Senate, the HELP Committee wants to hear from the Long COVID community to get their views on how this proposal can be improved and strengthened to effectively deal with this public health emergency. The committee is particularly interested in hearing from Long COVID patients and their families, scientific researchers, and medical professionals.

The public input on the proposal will help inform the legislation that Chair Sanders introduces.

Precis (full article in link): Introduction: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents substantial challenges in patient care due to its intricate multisystem nature, comorbidities, and global prevalence. The heterogeneity among patient populations, coupled with the absence of FDA-approved diagnostics and therapeutics, further complicates research into disease etiology and patient managment. Integrating longitudinal multi-omics data with clinical, health,textual, pharmaceutical, and nutraceutical data offers a promising avenue to address these complexities, aiding in the identification of underlying causes and providing insights into effective therapeutics and diagnostic strategies.

Methods: This study focused on an exceptionally severe ME/CFS patient with hypermobility spectrum disorder (HSD) during a period of marginal symptom improvements. Longitudinal cytokine profiling was conducted alongside the collection of extensive multi-modal health data to explore the dynamic nature of symptoms, severity, triggers, and modifying factors. Additionally, an updated severity assessment platform and two applications, ME-CFSTrackerApp and LexiTime, were introduced to facilitate real-time symptom tracking and enhance patient-physician/researcher communication, and evaluate response to medical intervention.

Results: Longitudinal cytokine profiling revealed the significance of Th2-type cytokines and highlighted synergistic activities between mast cells and eosinophils, skewing Th1 toward Th2 immune responses in ME/CFS pathogenesis, particularly in cognitive impairment and sensorial intolerance. This suggests a potentially shared underlying mechanism with major ME/CFS comorbidities such as HSD, Mast cell activation syndrome, postural orthostatic tachycardia syndrome (POTS), and small fiber neuropathy. Additionally, the data identified potential roles of BCL6 and TP53 pathways in ME/CFS etiology and emphasized the importance of investigating adverse reactions to medication and supplements and drug interactions in ME/CFS severity and progression.

Discussion: Our study advocates for the integration of longitudinal multi-omics with multi-modal health data and artificial intelligence (AI) techniques to better understand ME/CFS and its major comorbidities. These findings highlight the significance of dysregulated Th2-type cytokines in patient stratification and precision medicine strategies. Additionally, our results suggest exploring the use of low-dose drugs with partial agonist activity as a potential avenue for ME/CFS treatment. This comprehensive approach emphasizes the importance of adopting a patient-centered care approach to improve ME/CFS healthcare management, disease severity assessment, and personalized medicine. Overall, these findings contribute to our understanding of ME/CFS and offer avenues for future research and clinical practice.

A campaign group will be targeting UK media outlets during global ME Awareness Day – calling out what it calls the corporate media’s systemic “mis-and-disinformation” relating to this chronic illness.

It comes amid growing concern that the same psychologisation certain medical professionals and the media have enacted towards myalgic encephalomyelitis (ME, also known as ME/CFS) patients is now also being used against people living with long Covid.

ME Awareness Day: what is this debilitating illness?

ME is a chronic illness that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.

However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.

Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.

Severe ME

In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, and are completely reliant on others for their care. However, crucially ME can kill people – and has.

In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.

Much of the appalling treatment of people with ME is due to a cartel of medical professionals who have for decades claimed the illness is psychological.

Psychologising the physical

As the Canary’s Hannah Sharland recently wrote, there is:

a long global history of medical misogyny and trivialisation of the illness. Notably, one flawed 1970s study for instance, labelled a significant outbreak of the disease as hysteria.

This psychosomatic diagnosis, with sexist origins in tow, has persisted into the modern medical era. Of course, this also tracks, given that both historically and today, more women go on to develop the disease than men.

The medical establishment’s approach to ME/CFS is still mired in this same pernicious thinking. Largely, this pervasive psychologisation in recent years has come as a result of a persisting and highly controversial clinical study known as the PACE trial.

You can read more on the disease’s history here.

As Sharland also noted, medical professionals are also now using this ‘all in your head’ gaslighting against long Covid patients.

So, every year 12 May is global ME Awareness Day. This year, campaign group the Chronic Collaboration is set to up the ante when it comes to taking action.

Calling out the corporate media

The group’s founder Nicola Jeffery said in a statement about ME Awareness Day:

Patients have seen mainstream media repeatedly discredit and disregard any attempt to correct this – while at the same time continuing to platform medical professionals who are committed to the psychologisation of ME and Long Covid.

Enough is Enough.

The mainstream media has refused to report correctly on our chronic illness, so we have decided to do it for them.

On ME Awareness Day, the Chronic Collaboration will be reporting live from outside different media studios and offices at different times of the day – calling out their mis-and-disinformation and doing the corrections they should be doing for them.

It also wants people living with ME and long Covid to get involved. Jeffery said:

Whenever we do direct in person actions, we’re always really conscious of the fact that some of us are privileged to be able to even get out on the streets. So, we focus on how chronically ill people at home can get involved. For this demo, we want people to support online to get #MEAwarenessDay #ExposeMENow and #ExposeLongCovidNow trending on 12 May.

But we also want people to have a visible presence at locations we’ll visit. So we’re teaming up with campaign group Not Recovered UK to design roll up banners to plot outside media offices.

We want photos from people living with both ME and long Covid to put on them. People can email hello(at)thechroniccollaboration.com with a square photo (preferably 550×550 pixels), with their name, how long they’ve been sick for, & what they used to do, and we’ll add them to the roll up banners.

The Chronic Collaboration has set itself quite a challenge for ME Awareness Day. It will struggle to find a corporate media outlet that hasn’t contributed to the psychologisation of this very real and very debilitating condition.

ME Awareness Day: not the usual awareness-raising

As the Canary has documented, outlets like the Guardian and the Daily Mail, and broadcasters like the BBC have repeatedly contributed to the distress and gaslighting of people living with ME, and the regression of research into the illness.

For example, BBC ‘entertainment’ show Dragon’s Den was recently embroiled in controversy. It promoted a snake oil treatment for ME called Acu Seeds.

Meanwhile, the Guardian has repeatedly, published inflammatory articles pushing what is best described as junk science, without recourse.

Plus, the Daily Mail has defended members of the psych lobby – smearing chronically ill people in the process.

Until the idea that a physical illness can be ‘all in people’s heads’ is consigned to the dustbin of medical history, then we have to keep fighting back every time it rears its ugly head. Specifically, the Chronic Collaboration is correct to be targeting the corporate media within this. These outlets quite literally shape the views of much of the population.

So, as Jeffery summed up for this year’s ME Awareness Day:

Using the hashtags #ExposeMENow and #ExposeLongCovidNow we want our followers and supporters to let these media outlets know exactly what we think. Tag them in posts and tweets throughout the day, showing the reality of these chronic illnesses and correcting their lies. We want our voices to finally be heard.

This ME Awareness Day looks set to be a very disruptive one for the corporate media. What a shame that would be.

All the details of the Chronic Collaboration’s protest are in the image below:

Image

People with Long COVID in Australia have poor health outcomes that are comparable with another emerging disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot

It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

ME/CFS saps sufferers of energy and basic physical and cognitive functions, confining many to their homes or even their beds, often shutting down their working lives, social lives and family lives. The extreme seriousness of this condition, and the fact that there is neither a diagnostic test nor a validated treatment, places a special duty of rigour on doctors and researchers. But patient care has been compromised, and useful research inhibited, by the lingering conviction of many practitioners that ME/CFS is “psychosocial”: driven by patients’ beliefs and behaviour...

cross-posted from: https://swg-empire.de/post/669057

Long-COVID mit Antikörpern behandeln?

Three Long Covid cases could be healed with corona antibodies.

Only three cases and it's explicitly Long Covid. But maybe further studies can get insights into general ME/CFS.

Abstract

Post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (PI-ME/CFS) is a disabling disorder, yet the clinical phenotype is poorly defined, the pathophysiology is unknown, and no disease-modifying treatments are available. We used rigorous criteria to recruit PI-ME/CFS participants with matched controls to conduct deep phenotyping. Among the many physical and cognitive complaints, one defining feature of PI-ME/CFS was an alteration of effort preference, rather than physical or central fatigue, due to dysfunction of integrative brain regions potentially associated with central catechol pathway dysregulation, with consequences on autonomic functioning and physical conditioning. Immune profiling suggested chronic antigenic stimulation with increase in naïve and decrease in switched memory B-cells. Alterations in gene expression profiles of peripheral blood mononuclear cells and metabolic pathways were consistent with cellular phenotypic studies and demonstrated differences according to sex. Together these clinical abnormalities and biomarker differences provide unique insight into the underlying pathophysiology of PI-ME/CFS, which may guide future intervention.

Full text and pdf in link.

The new work, published this week in Nature Communications, affirms that ME/CFS is unquestionably biologically rooted, says Avindra Nath, clinical director of the U.S. National Institute of Neurological Disorders and Stroke, who led the study. It revealed brain activity differences, along with immune and other abnormalities, in 17 people with ME/CFS compared with 21 healthy controls.

Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

The study by Eva Untersmayr-Elsenhuber and her team from MedUni Vienna's Center for Pathophysiology, Infectiology and Immunology builds on earlier research on immune disorders and the intestinal barrier function in patients with ME/CFS. It is well known that ME/CFS patients often differ greatly in the clinical manifestations of their disease. However, despite intensive research, there is still no measurable parameter (biomarker) that clearly indicates the disease.

As the MedUni Vienna research team shows, ME/CFS patients can be divided into subgroups based on the function of their immune system. The study was able to identify various biomarkers in the patients that indicate immune system disorders or reduced intestinal barrier function. As a result, differences relevant to clinical care were identified in ME/CFS patients that would have remained undetected without the previous immunological stratification of the ME/CFS patient group. "In our study, we see that the immunological evaluation of ME/CFS patients is of crucial importance. Patients suffering from immunodeficiencies are characterised by an altered innate immune function. In ME/CFS patients with an intact immune system, the intestinal barrier function was reduced," explains the study’s principal investigator Eva Untersmayr-Elsenhuber. According to the researchers, this not only provides a more detailed insight in different disease mechanisms, but also indicates that depending on the patient’s immune competence, some treatment approaches might be more suitable than others.

The next step will be to review the study results on a larger scale. In order to advance research in the field, the first ME/CFS Biobank in Austria is currently being set up at MedUni Vienna with the support of the WE&ME Foundation. “ME/CFS Biobank Austria” collects human samples, which will be made available for future research projects. Untersmayr-Elsenhuber: "To ensure that ME/CFS research can take place quickly and transnationally in the future, we have been coordinating with research groups in the UK, the Netherlands and Germany from the outset."

Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease characterized by profound fatigue, post-exertional malaise (PEM), and neurocognitive dysfunction. Immune dysregulation and gastrointestinal symptoms are commonly observed in ME/CFS patients. Despite affecting approximately 0.89% of the general population, the underlying pathophysiological mechanisms remain poorly understood. This study aimed to elucidate the relationship between immunological characteristics and intestinal barrier function in ME/CFS patients. ME/CFS patients were stratified into two groups based on their immune competence. After documentation of detailed medical records, serum and plasma samples were collected for the assessment of inflammatory immune mediators and biomarkers for intestinal barrier integrity by ELISA. We found reduced complement protein C4a levels in immunodeficient ME/CFS patients suggesting a subgroup-specific innate immune dysregulation. ME/CFS patients without immunodeficiencies exhibit a mucosal barrier leakage, as indicated by elevated levels of Lipopolysaccharide-binding protein (LBP). Stratifying ME/CFS patients based on immune competence enabled the distinction of two subgroups with different pathophysiological patterns. The study highlights the importance of emphasizing precise patient stratification in ME/CFS, particularly in the context of defining suitable treatment strategies. Given the substantial health and socioeconomic burden associated with ME/CFS, urgent attention and research efforts are needed to define causative treatment approaches.

In 2019, Professor Ron Davis from America reported that researchers had developed a nanoelectronics test that could detect an impedance in white blood cells taken from people with ME/CFS1.

They felt their findings could represent a diagnostic marker, but since then there hasn’t been any further research in this area. ME Research UK and the ME Association have jointly funded a new 12-month study that will build upon these initial findings.

The research grant has been awarded to Professor Robert Dorey, Dr Fatima Labeed and Professor Michael Hughes from the Centre for Biomedical Engineering at the University of Surrey, and Dr Eliana Lacerda and Caroline Kingdon from the London School of Hygiene and Tropical Medicine and the UK ME/CFS Biobank.

The UK researchers have already used a more robust approach to identify statistically significant differences between the electrical properties in blood from people with ME/CFS compared to healthy and multiple sclerosis (MS) controls (using samples from the UK ME/CFS Biobank).

Their preliminary work suggests that the 2019 results from America are repeatable and can be explored in more detail. Furthermore, that they have the potential to be used as a routine diagnostic test.

(More in link)

The 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID aims to raise awareness, clarify misconceptions, promote understanding, and stimulate discussion among healthcare professionals, investigators, policymakers, patients, and community representatives on the clinical manifestations, management, therapeutic options, and health challenges related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID.

The incidence of ME/CFS continues to rise globally, in the aftermath of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections and Long COVID, increasing the need for informed diagnosis and treatment. Emerging evidence reveals many shared underlying biological abnormalities and symptoms reported in both illnesses, documented by multiple laboratories. This underscores the importance of sustained medical education and regular updates on research, diagnostic, and treatment guidelines.

The program will feature state-of-the-art lectures, and interactive sessions designed to address the educational needs of Portuguese healthcare professionals and health system capacity. It offers dedicated time for discussions to enhance knowledge exchange and reinforce the implementation of guidelines and recommendations.

The conference will take place on April 3 and 4, 2024, in Lisbon, at the premises of FLAD – Luso-American Development Foundation. You can attend in person (places are limited) or participate online via streaming.

Mitochondria retain bacterial traits due to their endosymbiotic origin, but host cells do not recognize them as foreign because the organelles are sequestered. However, the regulated release of mitochondrial factors into the cytosol can trigger cell death, innate immunity and inflammation. This selective breakdown in the 2-billion-year-old endosymbiotic relationship enables mitochondria to act as intracellular signalling hubs. Mitochondrial signals include proteins, nucleic acids, phospholipids, metabolites and reactive oxygen species, which have many modes of release from mitochondria, and of decoding in the cytosol and nucleus. Because these mitochondrial signals probably contribute to the homeostatic role of inflammation, dysregulation of these processes may lead to autoimmune and inflammatory diseases. A potential reason for the increased incidence of these diseases may be changes in mitochondrial function and signalling in response to such recent phenomena as obesity, dietary changes and other environmental factors. Focusing on the mixed heritage of mitochondria therefore leads to predictions for future insights, research paths and therapeutic opportunities. Thus, whereas mitochondria can be considered 'the enemy within' the cell, evolution has used this strained relationship in intriguing ways, with increasing evidence pointing to the recent failure of endosymbiosis being critical for the pathogenesis of inflammatory diseases.

© 2024. Springer Nature Limited.

Summary:

• Small proof of concept study

• Patient cohort had long covid

• Ampligen well tolerated

• Ampligen reduced fatigue more than placebo at some points in the 13 week study

• Full press release in [the link(https://aimimmuno.com/aim-immunotech-reports-positive-topline-results-from-phase-2-study-evaluating-ampligen-for-the-treatment-of-post-covid-conditions/).

IntroductionDisturbances of energy metabolism contribute to the clinical manifestations of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Previously, we found that B cells from ME/CFS patients have an increased expression of CD24, a modulator of many cellular functions including those of cell stress. The relative ability of B cells from ME/CFS patients and healthy controls (HC) to respond to rapid changes in energy demand was compared.MethodsCD24, the ectonucleotidases CD39 and CD73, the NAD-degrading enzyme CD38, and mitochondrial mass (MM) were measured following cross-linking of the B cell receptor and costimulation with either T-cell-dependent or Toll-like-receptor-9-dependent agonists. The levels of metabolites consumed/produced were measured using 1H-NMR spectroscopy and analyzed in relation to cell growth and immunophenotype.ResultsProliferating B cells from patients with ME/CFS showed a lower mitochondrial mass and a significantly increased usage of essential amino acids compared with those from HC, with a significantly delayed loss of CD24 and an increased expression of CD38 following stimulation.DiscussionThe immunophenotype results suggested the triggering of a stress response in ME/CFS B cells associated with the increased usage of additional substrates to maintain necessary ATP levels. Disturbances in energy metabolism in ME/CFS B cells were thus confirmed in a dynamic in vitro model, providing the basis for further mechanistic investigations.

MEAction is thrilled, once again, to partner with Shannon Williams-Bramburger of Nourish Therapeutic Yoga to provide a 30 minute, virtual very modified movement class on Thursday, Feb 8th at 11am PT/2pm ET/7pm BST that has been crafted specifically for people with ME. The whole class will be lying down and can be done from bed.

What to expect in this 30 minute class:
5-10 min. Breathing Exercises & Grounding
10-15 min. Gentle Movement with Breath
10 min. Guided Relaxation Meditation

-This class is free to attend-

There is an option to stay at the end of class for an additional 30 minute Community Chat. This gives the opportunity for you to ask questions and engage in a positive, supportive community with others who “get it.” If you are not able to attend the class in-person, the class will be recorded and shared at a later date.

Register for the class here: https://momence.com/Nourish-Therapeutic-Yoga/%23MEACTION%3A-FREE-Community-Yoga-Class-/98822140

cross-posted from: https://swg-empire.de/post/478875

More recent research news, something about T-Cells

I'm too brain fogged to really understand it, but it seems like the ME/CFS research is also having good results.

cross-posted from: https://swg-empire.de/post/477617

Long Covid: Zürcher Forschungsteam findet Ursache der Symptome

Roughly translated, the immune system keeps fighting. They found the proteins persisting in the blood of Long Covid patients. They lead to blood clots and other stuff. Most importantly this can be tested for.

Hopefully this is applicable to CFS/ME as well.

Interesting thread from Reddit.

TLDR for the link: This professor suggests that, as a pacing regimen, you never exert any muscles for longer than 30 seconds at any one time. After any such exertion, you need to have a break of 30 seconds of rest. Otherwise hypoxic damage of the muscles is bound to occur which leads to PEM the next day or day after. When you avoid PEM for a sufficiently long period of time, and exert yourself only in a safe manner, then, according to his experience, you can recover (go into remission).

TLDR for this post: More findings and recommendations in connection with this method. Plus explaining how overexertion leads to the flu feeling that some experience, through viral reactivation. I have highlighted the relevant section below for you to find in bold, if you want to read about that part in more detail.

Only recently I found him speaking in German podcast on ME/CFS for which he was interviewed on the subject of pacing with ME/CFS specifically. (For fellow German speakers, here is the link)

You will make more sense of the below points if you are familiar with his approach of the 30/30 seconds rule already, so you might want to take the time to read up on the original post linked above, in case it's all new for you.

Ok, so here are some more interesting insights from Dr. Simon that I only happened upon recently in the above mentioned podcast interview, specifically for ME/CFS:

(All these points reflect what he says in the podcast, but it's not a comprehensive list for the whole interview, because I only jotted down what was either new for me or else reiterated what I thought was worth reiterating again. If I have left something out that seems important, please, German speaking friends, post it below, so that we don't miss anything for the friends who are not German speakers but would also like to know everything that was being said and explained.)

Here goes:

• It typically is easier to go into remission and regain impressive function with his 30/30 seconds pacing regimen if you have suffered with ME/CFS for a long time already and have a stable baseline than if you are newly and severely affected by the Long Covid version of ME/CFS that's all fresh. An explanation for this is, that typically new Long Covid patients still have very active auto-antibodies that cause more disruption to the system than it is the case in longtime ME/CFS sufferers. The ME/CFS sufferers' antibodies willl have calmed down over the years already.

• He tells the story of an ME/CFS patient of his who went into full remission with this 30/30 pacing strategy after having been very ill with ME/CFS for many years. She started with a simple 30 seconds standing up exercise only and slowly slowly slowly (this can not be emphasised enough) worked her way up to now being able to go for runs in 14 km/h and 7 km/h intervals again. 7 km/h is a light jog, according to him. So I would guess that 14 km/h is decent running. (Note: 14 km/h are 8.7 miles per hour and this translates to 6 minutes 54 seconds per 1 mile.)

• He considers mild to moderate ME/CFS sufferers to generally still be in comparably quite good physical condition as they typically can still do impressive things if need be (of course they will crash if they overexert, but just speaking of strength, they still have an impressive capacity and function considering how ill they are and feel). It is these patients for whom his method can effectively yield very good results, if they learn how to not overexert themselves again. Note: especially dangerous on good days where people tend to overexert themselves. This is detrimental. It doesn't work. According to him, no one ever recovers by exerting themselves over capacity on good days.

• ME/CFS patients' lives are so difficult because they are stuck in a vicious circle of overexertion all the time. If these patients got the chance to truly pace, then they would not be so sick and they could recover. But the daily overexertion of just basic hygiene and household chores keeps them in a loop that keeps them low functioning. It's a vicious circle.

• Mental and emotional exertion have the same detrimental effect as physical overexertion. They have to be avoided if one wants to regain their health. Emotional exertion can also happen if exciting positive things happen, like a visit from a friend you have been looking forward to see. Patients will need to find a way to emotionally pace. This is important.

• Micro circulation issues: The whole problem is that the muscles and tissues don't get sufficient oxygen from the blood (which is perfectly oxygenated) anymore. This is a problem of micro circulation. It happens because some of the important cells for this to work are destroyed by auto-antibodies after an infection. But, and this is the important bit, they can come back. New cells can form again. And the vascular system must learn how to regulate blood flow again. This happens in the 30 seconds break (the "awarding break" where we sense and assess how we feel and where we rest and give the system a chance to learn). Such learning will take weeks, months and sometimes years to come to full fruition. But the body can do it if you give him the breaks and opportunity to adjust very very slowly.

• Activities where you need to use your hands over your head (like shampooing your own hair) will be extremely exhausting, because the blood needs to flow against gravity even higher up and the body of ME/CFS patients can't tolerate it. The 30 seconds rule doesn't work here. It needs to be less. Like 5 or 10 seconds. Then rest before you continue.

• When going for a slow and careful walk in accordance with the 30/30 rule, some ME/CFS patients need to sit down for the 30 seconds break while others can stand still or walk very very slowly. For the more severely affected folks, when sitting down they will need to raise their legs and rest their head on their knees to get the beneficial effect from the 30 seconds break. So not everyone will be able to go for walks right away, as a training, even if they can technically walk for 5 minutes. If they need their rests to include sitting or lying down, when there is no opportunity along the way to do so, then walks are not possible yet. Stick to simple standing up training at home. Sit down immediately when you feel unwell. If you can't yet stand up and tolerate it, start with sitting up and lying down again. If you can't tolerate sitting up yet, start your "training" by only raising your arm for a few seconds and then have a break and see how you tolerate it.

• As far as breaks are concerned: Switching between physical exertion and cognitive exertion unfortunately doesn't work as a break. It's not a real break, but we need real breaks. "Awarding breaks" as explained in the original post.

- Intense overexertion can lead to viral reactivation. (He says that sports physiology has shown this already 10 years ago)

Overexertion apparently "lures" back viruses from the tissue into the blood. But not only the virus itself, but also lymphocytes (which react to the virus)!

He says that this is what immediately leads to the patient feeling ill and feeling as if they had the flu or were about to getting the flu. It's the overexertion that facilitates this. And it's "definitely not good!" (quote as emphasized by Professor Simon).

Therefore patients who want to recover their health need to avoid such exertion intensity that leads to these immediate flu feelings. It's all about the intensity. (He emphasizes that word.) He says that unfortunately it can also be emotional or cognitive intensity that does this.

Once the viruses are reactivated then it can take 4 to 8 weeks (without any overexertion or too much physical or emotional intensity) before the situation calms down again.

This is the time when it can be "dangerous" to fully retreat to your bed and lie down for many weeks, as deconditioning happens on top of it and it makes everthing worse.

In case this reactivated virus thing happens to you, you should try extremely carefully to stay active in some way, but be extremely careful to not overexert yourself and to dial down on any mental (cognitive) or emotional intensity. (That's why for some patients psychotherapy is extremely helpful when they learn to calm themselves before intense emotions even happen).

He says that these flu symptoms don't always mean a full viral reactivation in every case. But when these flu feelings and symptoms happen, it points to too much previous exertion intensity. And that that is the intensity that you will need to avoid in future in order to recover.

His whole approach says to not be afraid of exertion in general, just 100 % avoid overexertion.

Bear in mind that muscle use of less than 30 seconds generally is safe when it is followed up by a 30 seconds break. And if you are at a stage where you have a steady baseline already that is bigger than these 30 seconds. If you are severe and bed bound than 30 seconds will be too much for you at this stage. You need to start smaller.

And also with taking stairs, the 30 seconds rule might not apply for you yet, even if it works well in other areas. It's more complicated due to the complex nature of the thigh muscle. You need to be even more careful. Take 3 steps, then rest 30 seconds. Then take the next 3 steps. It will take you longer to get up the stairs, but it generally will not exhaust and destroy you. (Of course this doesn't apply yet to patients who are still bedbound.)

If as an ME/CFS patient you do happen to overexert, make sure to rest the day after and day after that. Big crashes for ME/CFS patients, in his experience, happen not after one simple overexertion on one day, but after overexertion and then more overexertion on the next day and the day after as well.

EDIT: Another important message I just remembered, is: that generally, once the vascular function and microcirculation is restored with this pacing strategy, the recovered person will have their full capacity again. That means that a former professional athlete who is bedbound post Covid will not have to start from zero (like an untrained person) after recovering. This shows that it's not a matter of deconditioning. Once the circulation is restored, people can fully use their muscles again and walk 30 kilometres is necessary, without having to train up months to do it. The normal energy will be fully restored.

EDIT 2: Here is Prof. Simon speaking in English at a conference about this. It is a very technical talk to his colleagues, and unfortunately doesn't contain much info for patients on the 30/30 method. But in case you want to check him out nevertheless: from 46:32 onwards in this Vimeo link: https://vimeo.com/771944349 (thanks to u/Electrical-Fault301 for finding this and letting me know).

With that...

For me, my time on the sub ends here. Not because I am already fully recovered, but because the other day I read a seemingly random statement in a comment that said that people who get better from CFS don't keep hanging around on the CFS sub. I have been searching my soul and have now decided to take a leave from the sub and potentially even reddit as a whole, to see where it takes me. I want to go into full remission and I feel like hanging on to the sub and all the excitement (i.e. the intensity) that comes with posting on here (with my controversial views on the health benefits of calming your system with re-education (retraining) of the nervous system) is not allowing me to fully move on and fully pace the way I want to.

I feel my views on nervous system re-education are totally in line with what Prof. Simon is suggesting with his findings, that emotional pacing is key too, that we need to dial down intensity ourselves, and that the body can learn to regulate itself again, even when you are severely dysfunctional and your vascular system doing its own thing and causing you an insanely high heart rate. But arguing about my views in comments with users who feel like re-educating your nervous system or doing trauma therapy couldn't possibly have any health benefits for "real" or "true" CFS patients, is not going to bring me the calm I need for where I want to be.

I wish everyone on the sub, no matter if friend or foe (of my views and comments), health and happiness ❤️