Did you, just like me, have dental treatment for overbite when you were a kid? (Pushing back the jaw with headgear or similar)

I recently found (unintentionally) a very strong link between my jaw and my health issues. In fact my issues temporaly goes away one by one and I have/had extreme issues spending more or less all my time in bed in a dark room with hearing protection for the last 2 years.

I have made a document trying to include all the relevant information, unfortunately it is quite long so if this applies to you and you are very unwell but interested maybe ask someone close to read it. I will update the document when things proceed. If you are in a very bad place mentally I'd suggest to wait with reading it.

I'm asking for your help to share this to people in positions that can actually do something and take this further since me being shown this connection and keeping it to myself is of no help. Unfortunately I don't have a doctor or contact in the health care system that listens. I will try to share this document in as many ways possible. If you have suggestions to where I could send it please let me know.

https://docs.google.com/document/d/14-Ov38TK_vn4hm-SUAOMElVllfSjmpxwmGG6luWQhkY/edit?usp=sharing

Best, Simon

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I just started this month and over 3 sessions in a month we did the first dose to see how I did. I had my half dose and last of the titrating up a week ago and I just need to vent and see if there are others with MECFS on IVIG for primary immune deficiency specifically since dosage is very different depending on why you’re on it.

About 3 days after my last dose I started the intermittent flare up and crazy crazy fatigue. My sleep is completely all over the map now even on meds that’d normally knock me out. I have no control over my sleep which I had finally gotten a little control over. I was finally able to say I’d be awake from about 1pm to 9pm every day and a couple hrs in the middle of the night. My best sleep was 7am to 1pm ish. Now there is no rhyme or reason. And out of the blue all the flu like symptoms come popping up. I’m unable to talk on the phone for days and there’s always a background feeling of anxiety.

It’s nothing I can’t handle in the long run. It’s just extremely annoying and a bit triggering since I was finally out of that space. I knew messing with the immune system would of course trigger my MECFS but man, I don’t like going back there.

So anyway, anyone else on IVIG for PID? What has your experience been?

Hi all, I have been on the MEAction mailing list since at least 2016, but I haven't joined the reddit until just now. I acquired moderate following neuroinvasive infection and waffle between mild/mod these days. I am using a final paper in my social psychological theory course on collective action to speak about Millions Missing and MEAction, to spread some awareness among my schoolmates. As far as I am aware, first protests including shoes were around May 25 2016. Was that the first, or first larger scale, protest of the Millions Missing movement, or did collective action begin before that under the same brand/name/group? I want to do due diligence representing the movement and timeline faithfully. Plus, If there is anything the community considers important to include in such a project, don't hesitate to let me know.

I made a short video in support of the Open Medicine Foundation for a charity fundraiser called the Project For Awesome (PFA). Most of you probably already know that the Open Medicine Foundation is working to find a cure for ME/CFS. My son has been severe for several years now.

The way it works is that we posted the video on YouTube and the PFA website, then between 12:00pm EST on Friday, February 16th and 11:59am EST on Sunday, February 18th (so all next weekend) people go on the PFA website to watch a livestream and donate and vote for the best videos. It's basically a telethon, with videos for all different kinds of charities.

https://www.projectforawesome.com

The top 30 or so videos get a share of the proceeds. Last year that worked out to about $50,000 each. Here's a link to the YouTube video, which you can watch right now (warning: it gets pretty sad in the middle, so maybe skip 0:40 to 1:55 if that kind of stuff triggers you, I don't want to make anyone's symptoms worse):

https://youtu.be/HUrJ8LKJKf0?si=Y3aKJf89Ah6vvQmH

Please feel free to share this post & information with whoever you want - friends, family, social media, etc. - urging them to vote and/or donate. My daughter pointed out that it would be a good idea to go back and remind everyone next Friday or Saturday, so if you do share it, a gentle reminder could go a long way toward raising money.

Thanks so much for your help!

​

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I have ME/CFS and used to use the visible app, but got out the other habit as I never remember to log stuff. There is now the option to use it was an arm band to log your data. Does anyone use this? Is it too good too be true?

• NEW ARTICLE PUBLISHED!

Unraveling the Connections Between EBV, Long COVID, and Myalgic Encephalomyelitis
After months of meticulous review and analysis, I am proud to present a study that explores the deep connections between Epstein-Barr virus (EBV), Long COVID and Myalgic Encephalomyelitis. The findings, while fascinating, urge us to rethink our current understanding of these conditions:
1️⃣ EBV as a link: This review article suggests that EBV may be a catalyst, inducing similar symptoms in Long COVID and Myalgic Encephalomyelitis, and orchestrating far-reaching immune challenges.
2️⃣ Immunodeficiency and Ectopic Lymphoid Aggregates: One of the most intriguing and alarming findings regarding EBV is its ability to induce the formation of structures called ectopic lymphoid aggregates in tissues. These structures are not benign; in fact, they can be potent instigators of inflammatory responses that disrupt normal tissue function. Why does this occur? This review suggests that in individuals with certain genetic characteristics - specifically those with "weak" HLA-II haplotypes against EBV - this virus can become more easily established, leading to the formation of these aggregates. Most worryingly, these aggregates not only cause inflammation, but may also contribute to a form of acquired immunodeficiency, further weakening the body's defenses and even developing autoimmune diseases.
3️⃣ Consequences:

• Development of Autoimmune Diseases: EBV, by interacting with certain genetic haplotypes, can increase the risk of autoimmune diseases. The infection triggers an immune response that, in combination with genetic predispositions, can confuse the body's own tissues with foreign agents, leading to an autoimmune attack.
• Chronic Innate Immune Response: EBV infection weakens the T-cell response, causing persistent inflammation due to a constant activation of the innate immune system.
• Reactivation and Transient Autoantibodies: T-cell dysfunction leads to viral reactivations. During these reactivation episodes, the body may produce transient autoantibodies that may contribute to clinical symptoms. These autoantibodies may come and go depending on the stage of infection and viral reactivation.
• Abortive Lytic Replications: EBV cells can begin, but not complete, lytic replications, releasing proteins that intensify inflammation.
• Hypocortisolism: A reduction in cortisol levels. This hormone is essential for numerous functions in the body, including stress management. An imbalance can have profound effects on overall health.
• Microclot formation: These tiny clots can hinder blood flow, which in turn affects the delivery of oxygen and nutrients to tissues.
• Insulin Resistance: There is a connection between EBV infection and insulin resistance, which may contribute to metabolic complications.
• Serotonergic Disruption: It is notable how EBV affects serotonin levels, with an increase in the gut and a decrease in the central nervous system. This dichotomy may be at the root of several symptoms.
• Hypozincemia and Decreased Ceruloplasmin: Infection can lead to decreased levels of zinc and ceruloplasmin in the body, affecting immune function and other processes.
• Oxidative Stress and Inflammation: EBV infection intensifies oxidative stress and inflammation, depleting the body's antioxidant defenses and contributing to a vicious cycle of cellular damage.
• IDO Pathway Activation: This metabolic pathway, essential for tryptophan degradation, is impaired, which may have implications for mood and neurological function.
• Nitrosative Stress: Increased nitrosative stress may contribute to cellular damage and alter mitochondrial function.
• Altered Microbiota: Chronic EBV infection of the intestinal mucosa compromises the intestinal barrier. Increased serotonin in the gut causes inflammation, which combined with an increase in proinflammatory cytokines, leads to increased intestinal permeability. This results in an overgrowth of bacteria in the small intestine and development of food intolerances. Vitamin deficiencies may also occur due to inadequate absorption.
• Transactivation of Human Endogenous Retroviruses (HERV): EBV can activate genes in HERVs, specifically the env gene of HERV-K18, through their latent proteins. These superantigens may contribute to immune fatigue and a state of anergy in T lymphocytes.

4️⃣ Sex Differences: The role of gender differences is critical in affecting EBV interaction and symptom manifestation. Biological sex may influence the interaction with EBV. Estrogens in women increase B-cell survival and antibody release, but may also amplify risks with EBV, potentially promoting autoimmune conditions.
Women's menstrual cycles further complicate this situation, as phases such as ovulation cause potential immunosuppression and increase vulnerability to viral reactivations.
In men, testosterone shapes the immune response differently, often favoring a more effective defense against intracellular pathogens. This distinction may affect the progression and manifestation of conditions such as ME/CFS and Long COVID.
5️⃣ Treatments that could improve or worsen symptoms:

• Hydrocortisone:

Advantage: Potential to address hypocortisolism.
Disadvantage: May have limited or adverse effects in patients with ME/CFS, as HPA axis hypofunction is a consequence, not a cause, of immune impairment. In addition, it could worsen immunodeficiency and EBV reactivation. Therefore, it would not be recommended.

• Selective Serotonin Reuptake Inhibitors (SSRIs):

Advantage: They could help restore serotonergic impairment, especially at the CNS level.
Disadvantage: At the peripheral level, they could exacerbate hypoglycemia and hyperinsulinemia. In addition, they could worsen intestinal symptoms due to increased serotonin at the intestinal level. Other alternatives are better.

• Metformin:

Advantage: May be beneficial by reducing ROS production, improving insulin sensitivity, and not associated with risk of hypoglycemia.
Disadvantage: Side effects of the drug.

• N-acetylcysteine (NAC) and other antioxidants:

Advantage: Help reduce oxidative stress. They may decrease the risk of developing EBV-associated cancer and also inhibit NF-κB activation.
Disadvantage: No specific adverse effects are mentioned at normal doses.

• Hydroxychloroquine:

Advantage: May be useful by increasing intracellular zinc and decreasing SARS-CoV-2 replication.
Disadvantage: Promotes reactivation of EBV and other herpesviruses, which may contribute to long-term development of lymphomas. In addition, it limits T-cell responses and may increase oxidative stress. Its use would not be recommended.

• Antivirals such as valganciclovir or valacyclovir:

Advantage: May reduce reactivation, inflammation, appearance of temporary autoantibodies and insulin resistance.
Disadvantage: Side effects of the drug.

• Hyperbaric Oxygen Therapy:

Advantage: May increase pathogen clearance, synthesis of various growth factors, and angiogenesis.
Disadvantage: Increased oxidative stress may generate higher levels of ROS and reactive nitrogen species, leading to more oxidative and nitrosative damage. Therefore, this therapy could be useful for those viruses that do not generate latency, such as SARS-CoV-2, but could be detrimental for viruses that do generate latency, such as EBV, as it promotes the increase of latent cells by increasing oxidative stress.

• In summary, the symptoms of individuals with EBV-acquired immunodeficiency could be improved with the combined use of antioxidant supplements, antivirals, and metformin. The use of anticoagulants could also be considered.

I hope this study will serve as an aid to all professionals and sufferers seeking answers in the maze of symptoms and treatments associated with these conditions.
Twitter thread describing more details of the article: https://twitter.com/user/status/1703705886286344336
Read the full study here: https://link.springer.com/article/10.1186/s12967-023-04515-7
I appreciate the opportunity to share these findings with you and look forward to your feedback and comments.
If you find this information of value, I invite you to spread this post and the article to your contacts - together we can make this valuable information reach more people!

I have had ME/CFS for five years. One of my worst symptoms for the first half of that time was severe thirst (drinking typically 6-8 litres of water per day but up to a very dangerous 20 litres during severe episodes which always coincided with serious crashes), even to the point of experiencing multiple life-threatening episodes and ultimately hospitalization with a profound hyponatraemia of 116. However, I have successfully reversed these symptoms and I believe I have managed to work out the main reason for the thirst I experienced. I now drink no more than 3 litres of fluid daily.

I have written a book in which I share my hypothesis. This book is, and always will be, available for free download on its website. I am not looking to make any money with this book: I just wish to help out those who may now be stuck in the same nightmare of extreme thirst that I was once in (or even just a lesser nightmare). 

In this post, I will share my ideas as concisely as I can. It relates to thirst in ME/CFS, POTS and Long Covid. Anyone who wishes for a more complete summary of my book can read my post on the Phoenix Rising ME/CFS forum.

Please forward this information to anyone you think might find it helpful, whether a patient experiencing this symptom or a medic with an interest in these conditions. And please note that this is just an hypothesis for educational purposes only: this hypothesis has not been proved and nothing in this post constitutes medical advice. There are a variety of conditions that can cause extreme thirst and these should be thoroughly investigated by a doctor. Furthermore, I do not think that the ideas I present here are the only causes of thirst in ME/CFS and related illnesses (mast cell and histamine issues or other neurological dysregulations may also play a role for example), but I do think it is the main one/the likely reason for the most extreme form of thirst.

Why does extreme thirst occur in ME/CFS, POTS and Long Covid?

ME/CFS and POTS forums are full of posts in which patients describe their chronic thirst. The presentation is always similar: unquenchable thirst, dilute urine and a tendency towards hyponatremia (eg see this thread). Similarly, two recent Long-Covid research-surveys of thousands of patients found that over a third of patients cite extreme thirst as one of their main symptoms (see here and here). But why is this happening?

I believe that, for the most part, the thirst is caused by low blood volume. 

We know that many ME/CFS, POTS and Long Covid patients have less blood than a healthy person. An ME/CFS studyfound that ME/CFS patients with orthostatic intolerance have a mean reduction of 23% less blood than the physiological norm. Similarly, a POTS paper found a mean reduction of 16.5% less than the physiological norm**.** A recent paper about Long Covid also suggests that hypovolemia is central to the condition.

In the main, this reduction in blood volume appears to be driven by ‘Renin-Angiotensin-Aldosterone Axis’ suppression. The RAA axis is a complex hormonal network that controls salt levels in the body. In a healthy person, the RAA axis is capable of holding onto salt when needed. In ME/CFS and related conditions, this does not happen: ME/CFS patients routinely lose more salt in their urine than a healthy person, leading to a state of low blood volume over time. And even when that state of low blood volume develops, the RAA axis suppression is unable to correct it.

Why might this create thirst? The brain actually has two thirst centres: the osmotic centre (which is triggered when the body’s water content is too low) and the hypovolemic thirst centre (which is triggered when plasma blood volume drops by 10%). It is my belief that the extreme thirst in ME/CFS, POTS and LC, is actually the result of the firing of the hypovolemic thirst centre. 

But the hypovolemic thirst centre cannot be quenched by water alone. It requires appropriately concentrated fluids in order to be satisfied. Blood is salty stuff after all. I believe that the great and understandable mistake that patients make is that they just drink plain water in response to their thirst. The kidneys will just filter this water out, the overall blood volume will remain low and, as a result, the patient enters a vicious cycle of unquenchable thirst and excessive urination. The wrong solution is being applied to the problem. The urine is dilute because of the high water consumption and the hyponatraemia develops, both because of the high water consumption and because of the salt loss caused by the RAA axis suppression. 

For me, the likely most successful treatment is to cease drinking all plain water and instead only to drink Oral Rehydration Solution (according to the WHO formula). These sachets of glucose and salt are highly effective at boosting blood volume, something that was found in a recent POTS study. I am not saying that one could not drink some plain water but I believe it is important for the majority of fluids consumed to be ORS as plain water will counteract the effect of the electrolytes, pulling them out. I also do not think that just adding loads of salt to your meals is a good solution. A high salt diet stresses the cells whereas the salty solution from ORS just stays neatly in the bloodstream.

The book focusses on the thirst in ME/CFS, POTS and LC in chapters 2-4. However, the book itself has another purpose. It is challenging a condition currently termed ‘Primary Polydipsia’ or ‘Psychogenic Water Drinking’. This is a condition in which people supposedly drink huge quantities of water only because they are mentally ill. However, that condition has received very little research and is currently regarded as a medical mystery with an unknown cause. In the book, I suggest that, for the most part, what has always been called ‘Psychogenic Water Drinking’ is, in fact, ‘Hypovolemic Thirst’, and that the thirst that ME/CFS patients experience can solve the mystery that is ‘psychogenic polydipsia’. Again, my forum post on Phoenix Rising can provide more context about this part of the book for those who are interested. I will just mention that I myself was diagnosed with ‘psychogenic water drinking’ and, had I died from the profound hyponatraemia I suffered, would have had mental illness listed as my cause of death. 

I hope that this book will lead, one day, to the validation of a new kind of polydipsia, ‘Hypovolemic Dehydration’ and that future medical students will be taught about this as part of their studies instead of 'psychogenic water drinking'. This will include having to be taught about the pathophysiological mechanisms in ME/CFS, POTS and LC that create this low blood volume. In this way, no one will leave medical school without understanding at least one central aspect of the serious and devastating pathologies of these conditions. Again, you can download the book for free here.

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Hi everyone, I thought that I should post about this here to reach more people. I have an MEcfs discord server that I made and if anyone would like an additional resource for all things ME and also a place to meet others & network, you are welcome to join <3 feel free to share the server too. If advertising this not allowed let me know thanks!!

https://discord.gg/6xGcRtwsXb