Best theory so far?

[barabara]

For my ME/CFS: Untreated hypothyroidism and hardship/overexertion caused metabolic damage to the CNS. Exertion causes easy fatigue of functions such as movement, cognitive functions, as well as autonomic functions. Pushing past the fatigue releases endorphins, which cause PEM and brain fog.

Naloxone cures the PEM and brain fog by antagonizing endorphins, but not the fatigue or possible damage. The damage caused by hypothyroidism could be due to localized lactic acidosis. Anion gap was high for many years, and would be much higher in the brain, considering it's a metabolically active organ.

Treatment is ramping up thyroid, supplementing thiamine, and increasing cerebral blood flow, all of which reduce lactic acid formation in the CNS and give the brain an oppurtunity to heal.

 

[ljimbo423]

I think most people in this field think that both ME/CFS & long COVID, the symptoms are caused primarily by brain abnormalities, that include an activation of the immune system in the brain, or neuroinflammation;

I think this quote from Dr. Anthony Komaroff is right on the money.

Now researchers need to find what's causing the activation of the immune system in the brain. This is where treatments need to be focused to treat the root cause of ME/CFS imo.

My flu-like flares are clearly caused by immune activation in my body. My lymph nodes get swollen under my chin and I get flu-like symptoms from the immune cells in my brain being activated by an activated immune system in my body.

 

[lenora]

As you can see, there are no easy answers. We've all read so much and been through a lot.

Have you seen a neurologist for a proper diagnosis? You need to have multiple other illnesses ruled out and the neurologists are at the top of the medical hierarchy. I would ask if one has dealt with CFS/ME/FM before you even make an appointment.

Failing that many good rheumatologist are also specialists in our problems. Don't be surprised if you're put on an anti-depressant IF you experience pain. This is commonly used to help reduce the pain load in most patients. Both types of doctor will typically suggest that....and a small dose is all that you may need, it's hard to tell. Common ones are elavil, gabapentin (also used for seizures, so don't be surprised) and pregabalin (lyrica) which I use myself. All are supposed to help but not eradicate pain....you're progress will be followed.

As I told someone else, I can tell you about ice if you write back in that the drugs aren't working. There is also a compound ointment that can be prescribed...but this is one step at a time.

Whether you choose to use vitamins, herbs, etc., is up to you but I would urge you to have as much ruled out as possible. You should be given literature about the illnesses; if not, please ask for it. Take another person with you to remember answers and write them down. It can quickly become very confusing. Yours, Lenora.

 

[JES]

A trigger that activates the immune system, leading in my case into some sort of autoimmunity or more general immune dysfunction causing issues with ANS and likely, neuroinflammation. As this immune response progresses or goes on for years, you are prone to developing other issues such as SIBO from low transit times, which I believe are now a consequence rather than cause.

The "secondary issues" like an altered microbiome can themselves be responsible for lots of symptoms. Even if we do not know the exact cause, I believe it's possible to treat certain aspects, which may improve quality of life. I have gained back some health by focusing on diet and gut treatments.

I believe the root cause is often a pathogen, likely a virus, triggering the immune response either through a hit and run scenario or becoming a chronic infection remaining hidden in some places, which the immune system keeps recognizing but cannot destroy.

 

[sometexan84]

Cells are damaged due to infection and toxins.

This is actually a decent summary for it, if you had to explain it in it's most simple form.

Because the cells are damaged (and/or infected). And the results can be endless - inflammation, autoantigen production, energy metabolism dysregulation, etc etc.

What do the leading CFS researchers say? I don't think they're close to identifying a cause.

I don't believe the "leading CFS researchers" agree, they're not on the same page at all. First off, there's not many of them. Second, they all seem to be pretty stubborn regarding their personal theories.

I imagine research scientists focusing on such a niche as ME/CFS are not wealthy. And that they chose this area of research, not because of the money, but for the sole purpose of making a breakthrough. Like, THEY want to make the breakthrough. If this is all true, it would make sense as to why they all seem to do their own thing and collaboration is sort of rare.

 

[Rufous McKinney]

If this is all true, it would make sense as to why they all seem to do their own thing

Most of these researchers arrived where they are, on a path they followed mostly alone. A harvard person who is focused on heart rates and CPETS realizes these odd people with PEM are fascinating. Another is looking at CSF fluids and all kind of things in Norway. Ron has his son, his background, which he brings to the table. Somebody is looking at GWS notices similar to us- we get a bit more attention.

yes they are talking.

What I wannt know is: Solve ME sent this out today- with alot of great info on progress we've made here!

HUGE PROGRESS. From SOLVE ME:

• In December 2020, we authored a letter co-signed by 20 organizations calling for federally funded research into Long-COVID and ME/CFS. Congress approved $1.15 billion for Long-COVID research and clinical trials, with $100 million specifically used for the Rapid Acceleration of Diagnostics.

Who/What/How is this large sum of money and opportunity: going to manifest and WHO....WHOM knows whats going on in the Big Picture?

Is there a strategy regarding- how might these funds be used to GET US SOMEWHERE?

Does SOLVE ME have a research/NIH type coordinator? Does anyone know?

 

[perrier]

In Komaroff's recent words:
"ME/CFS often follows an infection illness of some-sort. It's very similar to what's seen in long COVID. What causes this? That's the big question. The big answer is, we don't know yet.
But, we do have theories, theories based on pretty substantial evidence.
I think most people in this field think that both ME/CFS & long COVID, the symptoms are caused primarily by brain abnormalities, that include an activation of the immune system in the brain, or neuroinflammation; auto-antibodies or an autoimmune disease that causes auto-antibodies that attack targets in the brain; decreased blood flow to the brain caused by abnormalities of the nervous system; and finally an abnormality in the failure of cells in the brain to produce enough energy molecules to meet the needs of the brain. All of these have been documented in ME/CFS & likely to apply in long COVID as well."

("Learning from the Past: The Long-Term Consequences of COVID-19 with Dr. Anthony Komaroff")

Thank you very much for posting. Komaroff understands ME very well; what do you folks think of his thesis. It sounds very daunting to treat what he is suggesting might be wrong.

 

[Marylib]

This is amazing. Treat EARLY with immune-modulatory drugs so it doesn't get chronic. Sadly, we didn't get Ampligen. There are protocols but at this point we don't know who has access or which immune signatures are which. Endothelial cell dysfunction, viral reservoirs, proteins, etc. One can only hope that Long Covid gets money for research.

 

[Rufous McKinney]

Question for ANYone Smart:

The metabolic trap theory (I still like this theory, and its associated theory- sudden remission and a pill fixes us)......

In my chair the other night, late, when we ponder things....

There must be a way to lower the tryptophan levels temporarily, allowing for the theory of becoming untrapped- at least for some period of time (unless some other process, traps us once again).

Now I understand its dangerous or something to just- have zero tryptophan.

But does'nt this route still seem like a somewhat obvious- possibly desirable approach?

Do we just need a Harry Potter wand, or something?

 

[Wishful]

There must be a way to lower the tryptophan levels temporarily, allowing for the theory of becoming untrapped- at least for some period of time (unless some other process, traps us once again).

I tried that. I was on a cornstarch (zero TRP) and water diet for months, maybe over a year, and I never managed to notice any deficiency symptoms or any change in my ME, so the body seems able to handle low TRP diets when necessary.

A functioning magic wand would probably solve ME, but it just moves the difficulty to 'first find a functioning magical wand'.

 

[Rufous McKinney]

cornstarch (zero TRP) and water diet for months

Really? Months? you lived? (it seems you did!)

 

[JES]

There must be a way to lower the tryptophan levels temporarily, allowing for the theory of becoming untrapped- at least for some period of time (unless some other process, traps us once again).

I was thinking about using something like BCAAs. BCAAs compete with tryptophan for entry into the brain, so if you supplement with BCAA, less tryptophan will make it into the brain. Another thing that will increase tryptophan in the brain is carb-heavy meals. Eating carbs results in an insulin spike, which interestingly decreases levels of all other amino acids and allows tryptophan to enter the brain more easily. I believe this is why some people experience fatigue after a carb-heavy meal.

I had a go at regular intake of BCAAs a couple of years ago, but it unfortunately caused a lethargic mood even at small doses - it seems many of us are very sensitive to these things. I don't think BCAAs are very likely to get you out of the metabolic trap, but they could perhaps reduce symptoms slightly if excess serotonin and tryptophan is a problem.

Aside from a no-tryptophan diet, which sounds a bit brutal, the other thing that could perhaps alter tryptophan levels in the brain is a ketogenic diet. If the carb intake is very low, it follows that you would get rid of the meal-time spikes of tryptophan transport to the brain. If the metabolic trap exists in the brain, this could theoretically help.

 

[Rufous McKinney]

I had a go at regular intake of BCAAs a couple of years ago, but it unfortunately caused a lethargic mood even at small doses

yes, I've used the BCAAs- they helped PEM, I think....

But then I keep getting odd gastroperesis, and during some acute episode, I stopped drinking things like: my BCAAs.

Need to get this happening again somehow.

I don't drink very much liquids. The delayed emptying seems improved......

 

[Wishful]

Really? Months? you lived? (it seems you did!)

Yes, and the experience really made me skeptical about the RDAs for nutrients. I did take VitC occasionally, since skipping that for long enough did make my gums sore, but I never experienced any other problems I could associate with nutrient deficiencies. Our distant ancestors didn't die because of lack of daily Flintstone's vitamins.

 

[seamyb]

ME is simply caused by the body being a total shit weasel. No more investigation or explanation is necessary, just ask the majority of doctors.

 

[Rufous McKinney]

Our distant ancestors didn't die because of lack of daily Flintstone's vitamins.

my metabolics would never survive it. I mean- one day I was handed a 2 pound tri tip and for 2 weeks: I simply gnawed on flesh- like some ravenous person in the movie The Fifth Element.

 

[Wishful]

Yes, and the experience really made me skeptical about the RDAs for nutrients.

I was thinking about this, and wanted to clarify. I accept that the RDAs for nutrients probably are somewhat optimal. What I'm less convinced of is the difference between meeting the RDAs and having a reasonable diet. The full RDAs might reduce chances of cancer, and extend lifespan, but I think it's a fairly trivial amount. Advertising for supplements imply benefits far beyond what is likely. The advertising also ignores potential health problems from taking some supplements.

 

[Rufous McKinney]

Advertising for supplements imply benefits far beyond what is likely. The advertising also ignores potential health problems from taking some supplements.

my husband is officially a Mega Supplement addict. I should photograph and document the horror.

 

[Wishful]

my husband is officially a Mega Supplement addict.

Maybe it will extend his lifespan by 13.108 hrs, or some such thing.

 

[Rufous McKinney]

Maybe it will extend his lifespan by 13.108 hrs

My husband's supplement consumption is inversely proportional to mine.

I am currently willing to swallow: 3 things.

I under do everything-if it says take three, I take one.

If the plant says: I need water , I say- well I watered you two weeks ago- whats the issue now?