Myalgic Encephalomyelitis is clear to see in the blood

[Rufous McKinney]

Why are we yin deficiency?

its more than just the Yin Deficiency but somehow THAT is a pre-disposing feature. Probably it collides with the other contributing factors.
I"ve been mad all day, it seems, so now I"m mad at my MOM. No Im' mad at myself that I failed to ask MY MOM the right questions about what was going on at AGE ONE.

My whole life went south because I was fed peas at age two months. That is the basic story as I understand it

MUSHY PEAS

MUSHY PEAS cause ME CFS in later years. Right.

Can I share this causal agent with the ME CFS research community? Maybe they missed peas?

 

[Rufous McKinney]

Why are we yin deficiency?

I think I should start a thread on this topic. And I just found some info on actual GENES.

5:27 pm is NOT when I start a new thread so Look for this exciting topic at a later date.

 

[Oliver3]

its more than just the Yin Deficiency but somehow THAT is a pre-disposing feature. Probably it collides with the other contributing factors.
I"ve been mad all day, it seems, so now I"m mad at my MOM. No Im' mad at myself that I failed to ask MY MOM the right questions about what was going on at AGE ONE.

My whole life went south because I was fed peas at age two months. That is the basic story as I understand it

MUSHY PEAS

MUSHY PEAS cause ME CFS in later years. Right.

Can I share this causal agent with the ME CFS research community? Maybe they missed peas?

Haha rufous.are you OK? I'm new to the pea hypothesis!
I think connective tissue differences create a whole host of downstream effects.
Life in general, let alone peas will do that to us.

I do like peas !

 

[Rufous McKinney]

Haha rufous.are you OK? I

I'm ok, despite the Peas.

Growing up, I was required to eat canned mushy peas.

Now, we get fresh peas and sometimes they get added to various food items like rice, so I can pretend I ate a vegetable.

I think connective tissue differences create a whole host of downstream effects.

Im very into that theory as well. If nothing else, I hypothesize that the virus has been feeding on the proteins and leaving us weaker. The fat bundles break down. The brain stem potentially falls. The neck gets more unstable. Feed back loops.

 

[Rufous McKinney]

I think connective tissue differences

my granddaughter: her elbows bend forward and sideways also. It's freaky to look at and concerns me, of course. I don't think she has EDS, nor does she meet Brighton criteria, but what is with these elbows?

 

[Oliver3]

Haha. I was sortve matching your irony...people wabt a reason for the fact we're I'll. Peas will do!.
But the reason Is. We were born weaker.
No one wants to hear thar! I didn't. It took a lot for ne to accept that it's likely the ultimate cause.
Like you say, many feedback loops get involved. But it takes the initial fault. In my opinion.
I think you can have eds and never develop cfs, because the threshold is never crossed.
Ron Davies had myocarditis as a kid. My mum did. They never developed cfs

But both the sons dud.
There's some kind of vulnerability in eds that makes us vulnerable to viruses.
It's not the virus itself. It's how we react.

Regarding the Beighton score and without wanting to worry where it's not necessary. I think eds is a spectrum disease and it can be expressed differently in ways that don't meet the Beighton criteria.
I believe Usain bolt has eds of the spine. The American female gymnast, for get her name has it. So it's not a foregone conclusion. You're granddaughter most likely has hypermobility in her arms. I think it depends on how the extent and type of tissue involved
That happened to Jen brea. She did have eds in her neck. In my opinion, that was an illness waiting to happen. Like say someone with a proclivity to high cholesterol

I'd say eds is needed to develop cfs. But eds doesn't mean you will develop cfs.

It's like any disease , it depends on genetic predisposition and life exposures.

There needs to be a huge dive into eds.
It's just way too common in ths disease to be a coincidence.

Theres likely an adaptive resoonse to eds. I heard m.s. sufferers developed an inflammatory gene about 5,000 years ago to deal with viruses.
it's probably the vast ecogenic influence. All the poisons etc that are triggering the cell danger response in us. Consistently triggered since in utero. Doesn't help make a healthy individual
I really hope there's a pivot to regenerative medicine .
Also anti putigenic therapies. Anything that stops our sensitive tissues from being triggered and makes them stronger

 

[Oliver3]

Regarding the something in the blood thing.
It seems to be a very generic marker for an organism that's being poisoned. From what I can tell, all those markers are involved in being an alchaholic and probably a shed load of other poisonings

 

[Rufous McKinney]

it depends on genetic predisposition and life exposures.

the files with DNA results are both extremely difficult for me to locate in my laptop AND I also have my husband's. I somehow truly hate trying to find the files and then trying to find the info (in multiple files with multiple confusing names).

I can't find anything in this Mac. I was a PC person for 45 years.

My husband is covered in connective tissue issues (including he has the hand contractures). so I can also forget which of us has what.

I "think" I'm heterozygous for something EDS.

Consistently triggered since in utero. Doesn't help make a healthy individual

why did they invent kindergarten?

Hanging out in our evolutionary village, with maybe 150 other people around, maybe my immune system would have been fine.

But instead.........

 

[Oliver3]

Yeah currently reading a book about an American woman being admitted into an aboriginal tribe. They go ' walkabout' for three months. Basically hunter gatherers. I'm sure there's been deaths or disease, but to be honest, the 90 year old matriarchs are also on the walkabout.
They don't need much water. Their bodies are hardened. They are beautifully in tune with nature.
They just don't lead a life of poison.
I saw a study on a tribe in south America somewhere.
Cardiac issues are very rare. Indeed most 80 smthgs have the same cardiac heakth as 50 year old westerners. This was confirmed on Fri scans etc.
They also had parasites that didn't affect their heakth.

Of course, I know death and disease can wipe out villagers like that so it's not all roses, but their bodies work incredibly well if they're allowed to live by the rhythms of nature.

God knows what we've done by creating this safe, but alien culture. But I mean you only have to look at bob naviauxs work to know that much of our illnesses are ecogenic.

My nhs doctor told me in their training that they're told that most adults have sine degree of heart disease.
This doesn't happen hardly at all in these so called ' primitive' tribes

 

[Rufous McKinney]

the 90 year old matriarchs are also on the walkabout.

Furniture probably kills us. What a mistake, chairs. That wrecks our backs, and likely our hips and knees.

Bad dentistry for the Boomer Generation, messed with our teeth and health.

The woman who cooked and cleaned for me, quit abruptly. So my son in law called the woman who used to work for his family.

Raquel has shown up, and she is likely my same age (71). So she's doing all the work I can't do five minutes off. Mopping, cooking, laundry, scrubbing.....This morning my shoulder was aching and she started up giving me a shoulder massage (I'm loving having Raquel, but I feel guilty).

 

[Rufous McKinney]

They just don't lead a life of poison.

And the poisons. All the chemicals. And we expect what different outcome?

 

[Oliver3]

And the poisons. All the chemicals. And we expect what different outcome?

I agree. I mean this idea is starting to gain traction even I. Mainstream politics. The forever chemicals, plastics, food poisons, medication s etc.
And the sedentary life over generations has got to have some kind of effect

 

[Oliver3]

And the poisons. All the chemicals. And we expect what different outcome?

There was a piece in the new York Times about this that I can't access because of the pay wall. basically questioning traditional views of ageung abd saying that chemichaks are desreoyung our heakth.

On a brighter note i noticeda stem cell therapy cured type 1 diabetes in a small trial.
the draw back is that immunosupressabts for life would be needed for these patients. BUT. it's proof of concept that regenerative therapy works and they're already trying to find ways to make the immune system not react to the transplant..

Anti purigenic therapies are another avenue. I've seen purines implicated in heart disease as well as autism etc. Hence suramin working in proof of concept trials.
Also 8n high blood pressure trials.

I think working at strengthening the organism is gonna be protective and perhaps reverse many of our deficits.

 

[Gala]

There is something coming up in the near future that may well help. The DEcode ME study. A genetic analysis of about 20,000 me/cfs patients which is looking to find what makes a person susceptible to me/cfs. Should be published in a couple of months. So maybe putting research like this together with that will lead to treatments.

That sounds very promising. I suspect that DecodeME will help reveal an underlying genetic vulnerability in connective tissues, particularly affecting the intestinal and capillary linings. Such a predisposition could compromise both the endothelial layer and the glycocalyx, leading to chronic barrier dysfunction and immune dysregulation. For this reason, I believe that restoring endothelial and epithelial environments should be considered as crucial as addressing the anaerobic pathogens that often colonize these compromised interfaces in ME/CFS.

In this context, a drug like sulodexide —a purified glycosaminoglycan compound used clinically to repair endothelial damage, treat chronic venous disease, and improve microcirculation— could represent a real breakthrough in the management of this condition. Sulodexide has demonstrated the ability to reconstruct the endothelial glycocalyx, enhance endothelial function, and modulate vascular inflammation.
Ferro et al., Sulodexide for the treatment of vascular diseases: a review, Vascular Health and Risk Management, 2017. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5710929/

In long COVID patients, sulodexide significantly improved the Endothelial Quality Index (EQI) and reduced symptoms such as chest pain, palpitations, and fatigue after just 21 days of treatment.
Vlachopoulos et al., Sulodexide improves endothelial glycocalyx and reduces symptoms in post-COVID-19 patients, Clinical Research in Cardiology, 2022. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8710949/

In vitro studies also showed that sulodexide reduced IL-6 and von Willebrand factor when coronary endothelial cells were exposed to post-COVID serum, indicating protective effects on the endothelium under inflammatory stress.
Barale et al., Human plasma from post-COVID-19 patients induces endothelial dysfunction in vitro: protective effect of sulodexide, Frontiers in Cellular and Infection Microbiology, 2023. https://www.frontiersin.org/articles/10.3389/fcimb.2023.1268016/full

The integration of large-scale genetic research like DecodeME with biomarker discovery and pharmacological approaches —including glycocalyx and endothelial restoration using sulodexide— may finally pave the way for mechanism-based therapies in ME/CFS.

I've written about this in more detail in a recent blog post (in Spanish):
https://fatigacronica.es/disfuncion-endotelial-sfc-em-long-covid/
Hopefully your browser can translate it if needed.

 

[Rufous McKinney]

will help reveal an underlying genetic vulnerability in connective tissues, particularly affecting the intestinal and capillary linings.

definitely on to something important here. I feel my intestines really struggle in part due to issues with connective tissue and associated structural components.

Recently I started taking a small dose of Lyrica at night, which unexpectedly seems to have helped calm down my gut a bit. Otherwise it disrupts my sleep often.

 

[NameHere]

I still think it's possible even for severe ME patients to show no abnormalities in the blood, aside from some that would occur in non-ME patients who had similar lifestyle limitations. Would a disease caused by nerve signal dysfunction necessarily show a signal in the blood? Likewise for many possible brain cell disorders.

I agree with you. They will likely need to do spinal tap to find the biomarker(s). For example, to my knowledge MS has no blood biomarkers; it is found on MRI and spinal tap.

 

[Wishful]

They will likely need to do spinal tap to find the biomarker(s)

Even a spinal tap might not reveal ME's abnormalities. The abnormalities could be highly localized and short-lived. Many of our symptoms could be due to a small variation in some neurochemical in a small part of the hypothalamus, which would be unnoticeable in spinal fluid. The molecules might not even move a millimeter before being broken down into something else.

 

[Oliver3]

Even a spinal tap might not reveal ME's abnormalities. The abnormalities could be highly localized and short-lived. Many of our symptoms could be due to a small variation in some neurochemical in a small part of the hypothalamus, which would be unnoticeable in spinal fluid. The molecules might not even move a millimeter before being broken down into something else.

Did you see the study that found out alzheiners might start in the kidneys.
This is a multisystem disease

 

[Oliver3]

definitely on to something important here. I feel my intestines really struggle in part due to issues with connective tissue and associated structural components.

Recently I started taking a small dose of Lyrica at night, which unexpectedly seems to have helped calm down my gut a bit. Otherwise it disrupts my sleep often.

Isn't there a new tratement to line the gut for those predisposed to leaky gut

 

[Wishful]

Did you see the study that found out alzheiners might start in the kidneys.

That doesn't mean that ME can't have biomarkers limited to a couple of mm around a tiny part of the brain, or any other body part. I'm not saying that ME is that limited, but it's still a possibility, so a negative search for a biomarker doesn't mean that whichever body part they took samples from is not involved. Furthermore, there are still molecules or structures that aren't looked for, either through ignorance or lack of appropriate technology.

My point was just that doing a spinal tap is not necessarily going to reveal an ME biomarker or prove that the brain isn't involved. If you look for a lost small item in a house, you check the most likely areas first, then less likely ones, but the item might be in an "It couldn't possibly be there" spot, with a valid reason for how it got there.