Why would CFS symptoms continually worsen overtime ?

[Viala]

- an enzyme, somewhere, is blocked or has lost affinity with a co-factor which can no longer help. Metabolic issue. Not making food into energy, which overtime, becomes worse and worse.
Currently on B12 transdermal oils (about 3 months), tried the B1 megadose thing to no avail so far...

I think this one is very possible. One of the factors could be a diet itself, something that we may not be able to tolerate and it gets worse after we continue to eat it. I think the influence of a diet is still hugely underrated, a wrong diet could easily cause all of the other things that were mentioned here, autoimmune conditions, inflammation, then infections and eventually mitochondrial damage.

If we are in some type of a viscious cycle, it could be the case that anything we eat could make us worse, and then even fasting could make us worse, at least up to the moment when we fix that part. It may also be caused by a single macronutrient or ingredient, or a combination of them that we do not tolerate, just like in celiac disease or any other food sensitivity. This could explain sudden remissions and short term remissions, because we usually never eat the same way every day.

 

[Wishful]

If were just the brain we wouldn't expect the odd responses to the exercise we get.

Exercise sends various signals to the brain, and the brain controls the rest of the body, including localized metabolic functions, so I don't think you can say that those responses can't be via the brain. It's not just nerve signals to the muscles (and vice versa); there are hormones and other signalling chemicals from the brain and from the muscles. They are released at picomolar concentrations, and affect cells all through the body, including the brain. I was going to post a bit from the Wiki page for myokines ( https://en.wikipedia.org/wiki/Myokine ), but you should read the whole thing, since there's a lot of complexity in muscle/brain interaction. If you want more, there's : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7288608/ . One comment was "Physical inactivity is associated with low-grade chronic inflammation,". Since inflammations seems to increase ME severity, chronic inflammation from not being active seems like a positive feedback loop, although we have plenty of evidence that GET doesn't seem to help.

The metabolic profile of the body wouldn't fail to respond to the exertion,

Mine doesn't, and other PWME reported being able to continue physical activities (including serious bodybuilding) without problems, so the muscle/metabolic problems don't seem to be a core part of ME, but rather a common downstream effect. I've done plenty of very strenuous activities, and not noticed any more "lactic burn" than pre-ME.

I haven't notice any breathing or oxygen reductions from pre-ME either, so I consider that not a core ME aspect either. Blood O2 is definitely influenced by the brain, via nerves and chemical signalling, so I see it as possible that a few malfunctioning brain cells could be trying to maintain blood oxygen at a lower than normal level. Hmmm, has anyone with ME complained about too high O2 levels? If yes, that would support the "control malfunction" theory.

 

[skandar]

It's been surprising to me, but I've rarely, if ever, read anyone mention their CFS got worse overtime. Their condition is usually a hindrance, but a steady one.

Jo - I've had me/cfs for 27 years. It had a definite trigger, a viral infection. The first year my total daily activity was reduced by 30 or 40%. I was still high functioning on most days, but my life changed for the worse. Then gradual decline to now, only 10% of normal (reduced by at least 90%, correcting for aging).

 

[Long Haul Mono]

Possible routes:
- Chronic infection: some pathogenic bacteria is making the host waste away, and hasn't been eliminated, so continues to do damage, worsening the symptoms; but I've tried a bunch of antibiotic therapies and combinations, and tests don't show a major sign of infection. Perhaps a more advanced dysbiosis test from a private lab ?

- Mitochondrial damage increases with time, because of oxidative stress, because of pollutants/alcohol/tobacco ... but I quit cigarettes long ago, rarely drink, the only med I take it Ambien for sleep, eat a very low sugar/ average-low carb diet. Perhaps long term keto is a solution ? Also NAC or NADH+CoQ10 don't seem to help much judging by a month's consumption.

- Brain inflammation due to some practice, dietary habit... ?

- An undiagnosed, cryptic autoimmune condition ? My mom had a form of autoimmune. I tested positive on a few alpha-adrenergic labs years ago.

- Something respiratory. Something to do with either oxygenated blood not supplying enough oxygen to the brain, or maybe even some sort of mini obstruction in pulmonary pathways or, just, sth with oxygen and bloodflow that was never diagnosed or treated.

- an enzyme, somewhere, is blocked or has lost affinity with a co-factor which can no longer help. Metabolic issue. Not making food into energy, which overtime, becomes worse and worse.
Currently on B12 transdermal oils (about 3 months), tried the B1 megadose thing to no avail so far...

Hypothalamus dysfunction leading to the body adjusting to a dysfunctional homeostasis?
...just a thought.

 

[Rufous McKinney]

I think ligament laxity can worsen over time, and that means our brain stem may drop further, over time.

Can lax ligaments recover? possibly?

 

[Jyoti]

Can lax ligaments recover? possibly?

Good point. I am pretty sure my brain stem is getting more smushed by the year..... There is regenerative medicine which potentially re-invigorated ligaments and tendons, but sadly I haven't heard anything really encouraging in relation to the ones that hold our cervical spine in place.

 

[Rufous McKinney]

There is regenerative medicine which potentially re-invigorated ligaments and tendons, but sadly I haven't heard anything really encouraging in relation to the ones that hold our cervical spine in place.

perhaps prolotherapy for the neck, works....and I'd be sorely tempted to try it.....

 

[wabi-sabi]

Overall, I'd say a pretty inexorable march of getting worse over 20+ years. Why? No idea.

Yes, this is my experience too.

My only thought is that any chronic illness is going to get worse if it isn't treated. I don't know specifically what's going wrong in us, but imagine if you had diabetes or Parkinson's for years... they get worse with time too.

I think you don't hear these stories because we get too sick to tell them.

 

[Azayliah]

[...] other PWME reported being able to continue physical activities (including serious bodybuilding) without problems [...]

I hadn't heard that before. Are symptoms other than PEM been defined as universal for all with ME, or do all of the ones I commonly see mentioned (brain fog, digestion and heart-related issues) vary/develop over time?

I haven't notice any breathing or oxygen reductions from pre-ME either, so I consider that not a core ME aspect either. Blood O2 is definitely influenced by the brain, via nerves and chemical signalling, so I see it as possible that a few malfunctioning brain cells could be trying to maintain blood oxygen at a lower than normal level. Hmmm, has anyone with ME complained about too high O2 levels? If yes, that would support the "control malfunction" theory.

My oxygen levels seem to be good, not too high. Despite that, I can get air hunger from brushing my teeth. Pacing according to heart rate is a no-go for me, but this reddit post led me to try 30 seconds effort, 30 seconds rest. I'm still skeptical about certain aspects of this, but the advice seems to be getting me through 2 days/week of physical therapy and an hour of arm exercises so far.

There has been some discussion by posters to that thread that might touch on your question. I think higher O2 correlates to lung damage, but I didn't see anything about a possibility of naturally heightened O2 levels... it all seems to require supplemental oxygen.

 

[Judee]

perhaps prolotherapy for the neck, works....and I'd be sorely tempted to try it.....

My Mom had full back prolo at least a half dozen times and since she was having it, I tried it for two sessions with my neck and jaw. It didn't really do or help anything for me. Of course, it was only two sessions and even though the practioner also used lidocaine injections first it was pretty uncomfortable to go through. Some practioners don't use the lidocaine. I can't imagine how that would feel.

It was also hit or miss for my Mom and her back pain. Sometimes it worked for about a month and other times no improvement whatsoever. Plus, I will say it was pretty physically traumatic. It makes you feel dizzy and faint afterwards.

She actually got more relief with chiropractic and DO adjustments than the prolo. It's the same for me as well. I am long overdue for a chiro visit. I used to go about every 4 months and haven't been able to go since Nov of 2021.

You could possibly try things like vitamin C, gelatin, and horsetail tea before trying the prolo and see if they help any.

Anyway, not to take the thread off topic but thought I'd mention all that.

 

[Wishful]

Are symptoms other than PEM been defined as universal for all with ME, or do all of the ones I commonly see mentioned (brain fog, digestion and heart-related issues) vary/develop over time?

I'm not sure that any symptoms are 100% universal for ME. I cured my PEM, but still have all the other symptoms, so I consider PEM to be a near-universal downstream symptom of ME, but not essential to ME. Some people report having no brainfog, while having various physical symptoms, while others report no physical symptoms but that brainfog is their worst symptom.

I don't recall any threads about long-term variations in symptom severity, but I expect the responses would vary from "absolutely constant" to "changes dramatically weekly". In my 20+ years of ME, I haven't had any digestion or heart-related issues. I've had (non-physical) muscle aches that have come and gone, and returned occasionally. I've had changes in responses to foods, but I consider those to be microbiome changes or changes to gut products, rather than digestive changes. My ME gave me double-vision somewhere around year 15. I haven't had any connective tissue issues, although those seem common for PWME too. ME has a very wide variety of how it affects the body and mind. For that reason, I'm against wasting money on studies of symptoms that aren't 100% universal.

 

[hapl808]

Obviously the problem with ME/CFS and associated research is: what is ME/CFS?

We don't know if 100% universal anything is possible, as we have no idea if it's a distinct disease, a bucket of many different diseases, or something else entirely. It's one of the reasons I'm a bit resistant when people discuss in definitive terms anything to do with it.

How can we say anything conclusive for something that we don't know what it is?

The scientist in me doesn't like vague criteria diagnosed disorders. You don't usually decide someone has a broken femur because they're complaining of pain, they're not feeling good after exercise, and it hurts when you touch it. Even with something that simple, ideally you want an x-ray and you can say, "Hey, it's broken right here."

Sadly, I think a lot of medicine is further away from understanding disorders and even disease than we'd care to admit.

 

[Rufous McKinney]

It was also hit or miss for my Mom and her back pain. Sometimes it worked for about a month and other times no improvement whatsoever.

which is likely why I"ve not bought a plane ticket to Florida.........(I"d want to see Dr. Hauser)

 

[Osaca]

How can we say anything conclusive for something that we don't know what it is?

That is why Long-Covid research is so vital for ME/CFS research. For the first time in history (or at least the first time biomedical into seems possible) a massive pandemic has caused a post-viral illness that often resembles or even causes ME/CFS and which is receiving some attention as well. We don't have to guess which viral culprit it could have been, whether it was Dengue, EBV, HHV-6, HERV, a retrovirus, toxins or something else. We know it's Covid, at least initially.

For the first time in history longitudial studies, studying the whole immune system from disease onset are possible. Far too few teams are doing it and sharing their data, but some are and much could be learned from that.

If they don't solve Long-Covid, I'm pretty sure they won't solve ME/CFS. Long-Covid is like the "simple problem" you solve to work your way up to ME/CFS.

 

[Jo86]

I think this one is very possible. One of the factors could be a diet itself, something that we may not be able to tolerate and it gets worse after we continue to eat it. I think the influence of a diet is still hugely underrated, a wrong diet could easily cause all of the other things that were mentioned here, autoimmune conditions, inflammation, then infections and eventually mitochondrial damage.

If we are in some type of a viscious cycle, it could be the case that anything we eat could make us worse, and then even fasting could make us worse, at least up to the moment when we fix that part. It may also be caused by a single macronutrient or ingredient, or a combination of them that we do not tolerate, just like in celiac disease or any other food sensitivity. This could explain sudden remissions and short term remissions, because we usually never eat the same way every day.

Yes. This would be the most obvious explanation I think. "- Why is he getting worse overtime ? - Oh well he simply must've been eating sth, weekly, and never stopped eating it". But what could it be ? Some people feel better on the carnivore diet. Some on the keto. I've tried entirely cutting out for months foods like grains, bread, anything with white flour... but never felt an actual improvement, like, distinctly noticeable, a before-and-after type delineation. I've never tried cutting out all animal products either, or cutting out ALL plant based products for eg.

 

[Jo86]

Jo - I've had me/cfs for 27 years. It had a definite trigger, a viral infection. The first year my total daily activity was reduced by 30 or 40%. I was still high functioning on most days, but my life changed for the worse. Then gradual decline to now, only 10% of normal (reduced by at least 90%, correcting for aging).

(I may've asked you this before) but is your username referencing the city of Alexandria ?

Anyways sorry to read that. Around what age were you at the time of the infection and start of the symptoms ? How do you know it was a viral infection ? It may've been in my case as the symptoms appeared immediately after my first semester at uni and 3 things happened during that time:
- smoking lots of pot (cannabis triggering CFS ?)
- awful eating habits: like cheap pizza slices, junk food, etc. Never any proper cooked meals.
- and a nose piercing, which caused a skin infection for months btw. So maybe sth entered the body that day.

 

[Mary]

@Jyoti , @Rufous McKinney - this is just a shot in the dark (btw, a Shot in the Dark, movie from the 60's, Iworth seeing as I recall . . . ) Anyways, a shot in the dark about neck ligaments and tendons - I've read several places that magnesium is important for tendon health. I'm guessing you both take plenty of magnesium, important for sleep as well as well as energy and other things. I take lots of it and have for a long time.

Relatively recently one of my knees began behaving oddly, it got painful after I went to bed and lay down, not while walking around. My sense was that things moved out of place when I lay down so I started wearing a knee brace to bed. It didn't occur to me to go to a doctor - I've gotten out of the habit!

I also started applying magnesium oil which helped a lot with the pain. I'd have to apply it a couple of times a night but it worked. I've noticed that recently my knee is better, I've stopped wearing the brace in bed and some nights don't even have to use the mag oil. Though I'm still careful about how I position my knee.

I'm wondering if the mag oil, which is important for tendon health, is helping to repair the tendons or ligaments in my knee? I don't know but I don't care - all I know is my knee seems to be better.

So I'm wondering if magnesium oil might help the tendons or ligaments in your neck? It has also been very effective for lower back pain. It might just be helping with inflammation but it might be doing something more for my knee. I'd actually gotten to the point of considering going to see a doctor (the last thing I wanted to do for several reasons!) but it looks like I lucked out.

Anyways, I just wanted to suggest this, applying it to your neck to see what, if anything, may happen - it's cheap, non-toxic, etc. And Swanson Vitamins has changed its formula so it no longer dries out your skin. It used to be in a brine solution - it was effective but it dried out your skin! And the new formula, whatever it is, is still effective but no longer dries out your skin --

 

[Jyoti]

I'm going to try it on MY knee right now! I have exactly the same thing--knee hurts when I am in bed but not so much when I am walking. I'll make a preliminary experiment on my knee. Then I'll try my lower back and work my way up the spine! I'll report back if it helps the cervical stability at all. I think that is a big ask, but I imagine we have all tried things even less likely to work. So why not? Thanks @Mary

 

[Viala]

@Mary @Jyoti Epsom salt baths are also a great source of magnesium, if sulfur is well tolerated. Sometimes after this bath my muscle pain went away for a couple of hours and I felt very relaxed, I think the bath needs to be really warm to work like that.

 

[Mary]

@Viala - I agree with you about the Epsom baths, and I find them very relaxing. But if I don't want to take a bath, the magnesium oil provides a quick source of magnesium I can use on targeted areas like my lower back or my knee or just about anything that hurts!