It'sMe

Sufferer of ME/CFS since a bout of EBV 7 years ago.

[Eliza Charley | Actress on Pause @ElizaCharley]

Excellent investigation by John Bolecek in @thesicktimes - My favourite is point 2. which includes insight directly from the creator of the game-test.

It illustrates the inappropriate nature of this test’s use in the @NIH @NIHDirector Intramural Study

@626Chuckwagon #MECFS

[Bridget O'Shea @Bridget_OShea]

The struggle with #MECFS isn’t just intolerable but unnecessary. This level of suffering doesn’t “build character” for anyone. It only leaves ourselves and our lives in ruins. I’ll never grasp this new reality. It’s so depressing. #LongCovid

[Lizzy H @hopefullizzy]

In 3weeks I turn 30.
I’ve never had a relationship. Never been on holiday with friends. Never finished my education, or gone out to work. I’ve never lived away from family. I’ve never cooked a meal.
It’s 14yrs since I went out on my own.

I have #MECFS

[Scott Daniska @scott_scientist]

To share my credentials:
-8 years of ME/CFS experience
-8 years of professional research experience
-3 years of research in ME/CFS experience
-Approx. 10,000 publications read
-Top of my graduate class; ran a genetics department
-Thousands of patients personally talked to through forums and phone calls
-Produced novel mechanism for ME/CFS & Long COVID, which resulted in remission of Long COVID patient I worked with
Yet the NIH does not find me "important enough" for a 3 minute comment in a 3 day meeting.
It should not be a surprise to anyone why $1.5 billion in Long COVID research funding yielded no results. 
At least I can say I tried to help.

[Monica Verduzco-Gutierrez, MD @MVGutierrezMD]

Spent Sunday doing the Lord's work being Reviewer #2.
Me: "The paper presents a biased & problematic view by focusing solely on female patients & implying that they somatize their symptoms. This outdated perspective undermines the serious physiological nature of #LongCovid."

[Kelly @broadwaybabyto]

Uncomfortable truth time - disabled & marginalized patients are frequently mistreated in hospital settings.

When you say “just walk out” or “just file a complaint” you’re failing to take into consideration the huge barriers to care we face (and the risk of retaliation) 🧵/1

[Manuel Ruiz-Pablos @manruipa]

🔴 𝐎𝐩𝐢𝐧𝐢𝐨𝐧 𝐨𝐧 𝐭𝐡𝐞 𝐫𝐞𝐜𝐞𝐧𝐭 𝐩𝐫𝐞𝐩𝐢𝐧𝐭 𝐩𝐮𝐛𝐥𝐢𝐬𝐡𝐞𝐝: 𝐌𝐲𝐚𝐥𝐠𝐢𝐜 𝐄𝐧𝐜𝐞𝐩𝐡𝐚𝐥𝐨𝐦𝐲𝐞𝐥𝐢𝐭𝐢𝐬/𝐂𝐡𝐫𝐨𝐧𝐢𝐜 𝐅𝐚𝐭𝐢𝐠𝐮𝐞 𝐒𝐲𝐧𝐝𝐫𝐨𝐦𝐞 (𝐌𝐞/𝐂𝐟𝐬) 𝐇𝐲𝐩𝐨𝐭𝐡𝐞𝐬𝐢𝐬: 𝐓𝐡𝐫𝐞𝐞 𝐒𝐮𝐛𝐭𝐲𝐩𝐞𝐬 𝐨𝐟 𝐍𝐨𝐫𝐚𝐝𝐫𝐞𝐧𝐞𝐫𝐠𝐢𝐜 𝐍𝐞𝐮𝐫𝐨𝐧 𝐃𝐲𝐬𝐟𝐮𝐧𝐜𝐭𝐢𝐨𝐧

We agree on the hyperinsulinemic state generated during chronic infections. Explanation with texts from our review article https://t.co/hdc9KNiyiC :

“High levels of IFN-γ produced by NK cells in response to persistent infection cause insulin resistance in skeletal muscle by negatively regulating insulin receptor transcription in myocytes but without this occurring in the liver, as occurs in type 2 diabetes mellitus. To compensate for insulin resistance in muscle and maintain euglycemia, the pancreas increases insulin production, causing compensatory hyperinsulinemia. However, hyperinsulinemia can reduce glycogenolysis in the liver, leading to reduced glucose production and decreased peripheral blood levels (transient hypoglycemia), which promotes fasting metabolism. Under normal conditions of infection, transient hypoglycemia is beneficial as it amplifies the cellular stress response of infected cells, leading to increased production of antiviral cytokines such as type I interferons, which impairs viral replication.

In addition, chronic high levels of insulin may also play an important role in the development of hypocortisolism, as insulin can cross the blood-brain barrier and bind to insulin receptors in the hypothalamus, inhibiting the secretion of corticotropin-releasing hormone (along with others such as growth hormone) and thus its negative regulation would inhibit pituitary ACTH secretion. This negative regulation of cortisol secretion can be observed, for example, in patients with insulinomas, where insulin augmentation causes a deficient cortisol response to hypoglycemia, whereas cortisol responses normalize after their resection. Both growth hormone and cortisol participate in glucose metabolism, increasing gluconeogenesis and antagonizing the effects of insulin. In addition, they participate as counter-regulatory hormones during hypoglycemia.

Thus, it seems that in the face of persistent infection the organism tries to maintain a state of transient hypoglycemia caused by an increase in proinflammatory cytokines, hyperinsulinemia and hypocortisolism, in order to maintain a chronic response of innate immunity, a decrease in viral replication and an enhancement of the effector response of CD8 T cells. But this state is not normalized in individuals genetically weak against the virus (HLA-II alleles), by presenting an impaired CD4 T cell function and thus a deficient CD8 T cell cytotoxic response, since CD8 T cells depend on CD4 T lymphocytes. ”

We would add that the hypocortisolaemic state in quite a few patients, would not only be due to the hyperinsulinemic state but also as a consequence of a lymphocytic hypophysitis in individuals with susceptible HLA-II alleles. Therefore, we believe that the hypocortisolemic state is due more to this damage to the pituitary together with the hyperinsulinemic effect.

For there to be an increase in glucocorticoid receptor resistance there should be a compensatory increase in cortisol (as occurs in hyperinsulinemia due to insulin resistance). Most patients with these diseases present hypocortisolemia but it is true that there are some with hypercortisolemia with the same symptoms. The latter could have this resistance of the glucocorticoid receptors mentioned.
#MECFS #LongCovid #health

[🕸️Dr.T, PhD @chydorina]

Why aren't your treatments working?

If you have #ME or #LongCovid and have been trying everything under the sun and nothing seems to turn the dial then this post is for you.

This is the question that has consumed me for years. When I look at the treatment protocols of some of the 'greats' - like Dr. Goldstein, their approach was to go down a list of 20-40 potential treatments and just try them in order of likelihood of efficacy.

This shotgun approach was used not because it was the best method - it was used because for most patients most treatments failed and there seemed to be no rhyme nor reason for it.

The strangest thing about post-viral and similar conditions is that treatments should work better than they do. There is good research showing that we have identified many of the pathways of dysfunction and that supplements and meds do exist that should THEORETICALLY help.

So, why dont they?

I really think this is the heart of the matter. Why are the treatments that should help not helping?

When you look at the problem from this perspective you should be able to see that the one thing missing from consideration is widespread basic biochemical dysfunction.

Lets use an analogy. Its like we are a car BUT but all the seals and hoses that are key for the motor to use oil and gas are leaky and broken. We do have a glitchy functioning electrical system though. We are likely to focus first on the electrical system (but this obviously will not help the car actually drive). Its just a component system. Lights are superfluous without a functioning motor.

All the components that are needed for the motor to use fuel are faulty. You can pour in all the oil and gas you want but it just leaks out and hits the floor. You can replace all the electrical components and fix the glitches. But no joy. You are trying to fix the system but working on the wrong parts (the electrical system) or the underlying parts that make the fuel system work are cracked and broken.

It doesnt need more juice (aka gas/oil) it needs new seals and hoses (in biochemical terms these are the co-factors - the nutrients, minerals, and other molecules needed to keep biochemical system functioning).

This is obviously not a great analogy but it does get few key ideas across. Somehow we are missing some fundamental problems that need to be fixed for treatments to work. They work sometimes in some people because people have varying levels of these fundamental dysfunctions (and these fundamental dysfunctions also change over time).

I think personally that four foundational systems need attention before "disease modifying treatment" can really work.

The foundation that we build medical interventions on IS incredibly important.

If we look at dysfunctional systems in #ME we see that nearly all systems of body are affected to one degree or another. This suggests something important: that biochemical problems exist at the very most fundamental level.

I have come to think that these are imbalances and severe deficiencies in nutrients, electrolytes, minerals, and microbiome dysbiosis. This theory is the brain child of @joshual_tm and this is what the Born Free protocol first targets.

Consider the following diagram. Dont get hung up on the details and skim over this. All i want you to pay attention to are the words in red that go between the compartments (bubbles).

So lets just look at one for example: Between DOPAMINE and NOREPINEPHRINE there are 3 sets of RED words: Vitamin C, Copper, B3.

What does this mean? It means for dopamine to become norepinehrine (which is an essential step) it needs those 3 things in the red. It needs: Vitamin C, copper, B3.

What if you are running low or are very deficient in those? Well, there will be a block in the conversation in the pathway. The normal cycle/process will not work properly.

Now imagine that of the 100,000s of processes similar to this going on in the body every single one of them with have little RED names between each step: these will be minerals, these will be nutrients, these will be other essential molecules.

It should be really CLEAR how important these foundational basics are. There are not optional. They are 100% crucial for proper function.

So, what do you do? I think this is where we all need to start. If we have been sick for a long-time then this is almost for sure a major issue. But even if we have not been sick for long it still applies. This is because the process of fighting infection is actually to take these important nutrients and minerals out of the game - this is what the body does to fight the infection - it starves it (and us at the same time) of what would be needed for proper function.

To complicate matters further - leaky gut means that even if you have a great well-rounded diet you are likely not getting everything you need from it. Because we have serious problems with absorption and with minerals being sequestered - we are not actually USING what we are getting from our food.

If you are feeling overwhelmed, dont. I actually think this is a really hopeful theory. Past failures make a lot of sense. Next steps are pretty clear. At the very least you will be working on a problem that does for sure have consequences - rather than just throwing money away on fixing a pathway that cant be fixed because the co-factors are not there.

I hope this makes sense! What do you think about these ideas? Do they make sense to you? For me - it just seems so intuitive.

[Matt Lazell-Fairman @mfairma]

Such a goddamn travesty Cochrane hasn’t pulled this yet and that we’re still waiting on a replacement. Our lives mean nothing.

[Bridget O'Shea @Bridget_OShea]

As long as funding for #MECFS continues to be pissed away, the more young people will die. I’ll never comprehend the lack of concern. The complex treachery may not be pretty, but it sure AF doesn’t warrant neglect to the point of literally burying a disease. #LongCovid #pwME

[Paul Keeble ME/LC @PaulRKeeble]

The psychologists are coming for Long Covid in the UK strongly now.

"The group will work to develop guidance about Long Covid and how psychologists contribute to rehabilitation, treatment and support."

https://t.co/JNOONvc3YR

[Brain Inflammation Collaborative @BrainInflCollab]

A recent discovery identified a new mechanism regulating:
- neuroinflammation and
- neurodegeneration

It might explain exactly why these two brain pathologies are so common.

Here is what you need to know (in simple terms)...🧵

[Jeannie Di Bon @jdibon]

How did it come to this? People commenting that preparing for medical appointments feels like preparing for a trial. Preparing evidence, hoping to convince the jury!

People even stop going to appts because it’s just too stressful.

[Brian Fog @useless_priest]

ME is the only illness where they have to research a cure for the doctors before they can move on to the patients.

[@richardvallee.bsky.social @richardvallee]

So good to see parts of the medical profession get around to what millions of amateurs have known for 4 years.

We may even see some tiny bit of progress on it somewhere between the next two ice ages.