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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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10 years of exercise induced/chronic brain fog – I’m cured! (90% sure)

Hip

Senior Member
Messages
17,824
Yes, I know about POTS, I spent lots of time researching it and other diseases. I probably was borderline, my pulse went up about 25, now it's about 15 - 20 and improving.

So you actually have POTS to a degree.

POTS by the way is often present in ME/CFS patients.

POTS I think more likely explains your brain fog and your exercise intolerance, as both are known symptoms of POTS.

And the fact that these symptoms improved and more or less disappeared on taking 4 grams of salt a day again hints at POTS as the cause, as salt is a treatment for POTS.

When you say that your heart rate jump on standing is now down to 15 - 20, did that improvement occur while you are taking 4 grams of salt daily?

Have you tried stopping the salt for several days, to see if your brain fog returns, and your heart rate increase worsens?


By the way, are you testing for POTS in the morning, or later in the day? There can be a big difference. I get a heart rate increase of up 40 if I test first thing in the morning, but only around 25 to 30 if I test later in the day.

Dr Raj suggests that for maximum sensitivity, testing for POTS should be performed in the morning, because POTS symptoms are worse in the morning.1 Note that the threshold for a POTS diagnosis using the poor man's tilt table test should be set to 27, according to Dr Satish Raj (though if you are using professional tilt table, then the threshold is 30).


In any case, thanks for taking the time to post your story. I find these stories helpful, as you never know when a treatment that helps others, even if they don't have ME/CFS, may also be helpful for those here ME/CFS.
 
Messages
3
Location
Denmark
When you say that your heart rate jump on standing is now down to 15 - 20, did that improvement occur while you are taking 4 grams of salt daily?
Took 4 grams every day, last 8 months, heart rate difference reduction happened gradually during that time.

Have you tried stopping the salt for several days, to see if your brain fog returns, and your heart rate increase worsens?
No, may do that in the future.

By the way, are you testing for POTS in the morning, or later in the day? There can be a big difference. I get a heart rate increase of up 40 if I test first thing in the morning, but only around 25 to 30 if I test later in the day.
Both mornings and evenings, I may check for differences in the future too.
 

SOC

Senior Member
Messages
7,849
Pointing out that his cure for his condition -- clearly not ME/CFS -- is highly unlikely to be a cure for OUR condition is now some kind of a sin? I'm glad for him, and said so. It's great that he figured out his fatigue from obesity and other metabolic syndrome symptoms can be cured by diet. Good for him.

People with fatigue and cognitive problems from major depressive disorder may, in some cases, be cured by psychotherapy and/or psychotropic medications. I'm glad for people for whom that works. I also think that's unlikely to cure, or even provide major QOL improvements for ME/CFS.

People with fatigue and other problems resulting from deconditioning may be cured by exercise. It's good that people figure that out and improve their QOL. That is unlikely to cure ME/CFS, either.

Is it also a sin to point out that these simple solutions that cure some of the symptoms we have in common with other illnesses are not cures, or even significant QOL improvements, for ME/CFS?

Do we need a new forum for the "Hey guys, I cured my XYZ -- not ME -- by exercising/eating right/the LP process/CBT/GET/jumping in the cold ocean" threads? We have one for non-ME (but somehow related) research, and non-me (but somehow related) news, so why not one for non-ME (but somehow related) cures?
 

Sean

Senior Member
Messages
7,378
I don't think the neuroimmune illness ME/CFS is caused by obesity, zero exercise, and eating exclusively highly processed foods.

Since we don't really know what causes ME/CFS, that's kind of an unfair statement.
If ME/CFS only, or overwhelmingly, occurred in people who were obese, didn't exercise, and ate exclusively highly processed foods, before getting sick, then you may have a point.

But there are way too many counterexamples to that set of pre-conditions for it to hold any serious water as a primary causal explanation or therapeutic possibility.

At a generic background level those factors may both increase vulnerability to getting ME/CFS, and exacerbate it if you do get it. But otherwise, there is no evidence I know of that they have any specific relevance to it.
 

whodathunkit

Senior Member
Messages
1,160
This will be my last post in this thread. Promise. But I feel compelled to to address some things.

ointing out that his cure for his condition -- clearly not ME/CFS -- is highly unlikely to be a cure for OUR condition is now some kind of a sin? I'm glad for him, and said so. It's great that he figured out his fatigue from obesity and other metabolic syndrome symptoms can be cured by diet. Good for him.
For heaven's sake, SOC. Why use a loaded word like "sin"? You specifically said you thought he was advertising he cured his ME/CFS. But he clearly never said he had! Frankly, I'm not even really sure why the fact that diet isn't a cure for CFS was even brought into it. So no, your remarks aren't a "sin", just a little confusing.

...these simple solutions that cure some of the symptoms we have in common with other illnesses are not cures, or even significant QOL improvements, for ME/CFS?
First off, there's nothing *simple* about curing any type of long-standing metabolic problem. Let's be clear about that. It may be simpler than overcoming CFS, but overcoming almost anything seems to be simpler than overcoming some cases of CFS, so saying it's "simpler" doesn't mean much.

Anyway, diet may not have made any significant different in your case. But I've seen plenty of anecdotes on this board where diet and nutritional interventions *do* result in significant QOL improvements for some people with diagnosed CFS. As we know well, not every ME/CFS case is the same. And as we also know well, militantly insisting they are is counter-productive. Every case is different; some things seem to work for some people and not so well for others. However, I do stand by my assertion that regardless of our morbitiies, we're all still human, and instituting the dietary guidelines in the OP to the extent tolerable to the individual will probably benefit everyone. Slamming the door shut on that notion by insisting it can't possibly result in anything but marginal improvements in someone with CFS is IMO counterproductive.

f ME/CFS only, or overwhelmingly, occurred in people who were obese, didn't exercise, and ate exclusively highly processed foods, before getting sick, then you may have a point.

But there are way too many counterexamples to that set of pre-conditions for it to hold any serious water as a primary causal explanation or therapeutic possibility.
First of all, the OP said that exercise was the *cause* of his problem, not the cure. Why does everyone keep missing that? That's a rhetorical question, BTW.

Second, we can't really know what people's diet was before they got sick. People may say they ate healthy before getting sick, but a couple/few years of healthy eating right before getting sick may not be enough to counter the lifetime of poor or marginal eating habits before that. We frequently don't take childhood patterns, habits, or happenings into account when we get sick in our 30's and beyond. But for all we know our childhood/adolescent nutritional foundation may play the biggest part in our adult health or even our longevity. (God help me if that is so.)

Or maybe people may have eaten a lot of a "healthy" food they were allergic/addicted to, which helped precipitate ME/CFS.

Also we should remember that "eating healthy" is a very subjective term. I know people who say they eat healthy because they eat frozen meals with vegetables instead of McDonald's or Burger King. I also know people who say they eat healthy because they have salad with dinner just a couple times per week.

I also know people who cook everything in vegetable oil or margarine, and slather their salads and veggies with vegetable oil and margarine, who say they eat healthy.

Point being, the perception of healthy eating is subjective and we can't necessarily rely on it when people say they ate healthy before getting sick with ME/CFS

Further, poor eating habits do not automatically correlate to obesity. Most of those people I referenced above (who think they eat healthy but don't) are not obese. Many are not overweight at all.

And as we well know, trying to get healthy can actually precipitate some health problems, due to immune stimulation or whatever.

Until someone does a rigidly controlled, long-term study on the effects of diet and nutritional status on a large number ME/CFS patients, we can't know for sure.

I guess my biggest problem with some of the comments in this thread is the sweeping generalizations that are being made about what can and cannot help ME/CFS in every single case. Because we can't possibly know what's going to help or hurt any single individual.

Therefore, my contention is that any positive anecdotes about alleviating any long-standing symptoms of ME/CFS might be helpful to someone and have a valid place on the board, and people shouldn't have to worry that their anecdotes aren't going to get marginalized or devalued somehow because they're not legitmate because they've never been diagnosed with ME/CFS.

Do we need a new forum for the "Hey guys, I cured my XYZ -- not ME -- by exercising/eating right/the LP process/CBT/GET/jumping in the cold ocean" threads? We have one for non-ME (but somehow related) research, and non-me (but somehow related) news, so why not one for non-ME (but somehow related) cures?
Could be. The OP specifically states he wasn't sure if this was the correct place to post this anecdote. However, the proliferation of subforums on PR already makes it hard to find stuff. It's kind of like bureaucratic rules...there is a tipping point at which more is not necessarily productive.
 

ebethc

Senior Member
Messages
1,901
@SOC: so you're just trying to make it double-extra clear to everyone, even though the OP and JPV already made it quite clear, that diet isn't likely to be a complete cure? Cuz I don't think anyone ever said it was or would be. Just that it may help or has helped them. I'm just not sure where your remarks are coming from, is all. Since everything that generally has the potential to alleviate mitochondrial problems will generally be of help to ME/CFS patients.

Just making sure we're on the same page here (and whereof you keep speaking of diet not being a cure for ME/CFS, when nobody ever said it was).


awesome.
 
Messages
10,157
This forum is for people with ME/CFS, caregivers, researchers who are interested in ME/CFS, doctors who are interested in ME/CFS -- this forum is NOT meant to be a place where people who don't have ME/CFS come to discuss general individual symptoms like fatigue, their cure/recovery unrelated to a diagnosis of ME/CFS.

It's not about having an 'official' diagnosis, many are self-diagnosed and when they describe their symptoms, it's likely they have ME/CFS. When the forums get filled up with non-patients discussing symptoms un-related to ME/CFS, the webite becomes confusing and meaningless and loses its focus. There are many here that can only tolerate limited time on the forums due to the nature of ME/CFS, they don't want to waste precious time reading a thread about a cure to find it has nothing to do with ME/CFS.

There are people who join who do not have ME/CFS and are looking for information related to SNP's. There are people who google and join because they found something on one of the forums, not even realizing the website is for people with ME/CFS. There are people who come here conflating chronic fatigue with CFS and then start pushing lifestyle cures. There are people who join and have absolutely no idea what ME/CFS is because they came to talk about something like 'sleep' because our forum came up in a google search. It's never-ending and the forum needs to be focussed on ME/CFS -- it's why it exists. Sure discussing symptom relief is fine but it should be symptom relief related to having ME/CFS.

No one said he didn't have a very real, serious problem, just that his cure is unlikely to cure, or even make a major difference in CCC/ICC-defined ME/CFS.

This is an ME/CFS board, not a general health board, so it's quite relevant to discuss whether the treatment is likely be beneficial to ME/CFS patients.

This is an important point -- Phoenix Rising is NOT a general health board so it IS quite relevant to discuss whether the treatment is likely to be beneficial or even relevant to ME/CFS patients.

Regardless of any of that, please point me to the place in the PR rules where it says that everyone who joins here must have CFS and every single discussion must focus on CFS exclusively and not CFS symptoms, comorbidities, or adjunct therapies. If that rule exists, I am completely unaware of it.

Does it have to be a rule? I don't go and join Alzheimer's forums to discuss brain fog, I don't go and join Cancer forums to discuss my own symptoms of pain and fatigue which have nothing to do with Cancer even though both can have these symptoms. I think I would be called out on a forum for Alzheimer's or Cancer if I joined and started talking about ME/CFS. Maybe, the members could offer me some solutions related to brain fog, pain, and fatigue but really I should be on a forum for ME/CFS to discuss these things because of my diagnosis which is neither Cancer or Alzheimer's. We need to keep the focus on ME/CFS.

Unless there's some sort of unwritten rule on PR that I am unaware of that states that the word "cure" is only allowed to be used here if it is in reference to a cure of CFS...

There is no rule but really this is a forum for ME/CFS so any cure story should be related to it. I wouldn't go to a Cancer forum and start discussing a cure related to ME/CFS. A line needs to be drawn somewhere? There are hundreds of forums and sometimes people end up on the wrong one through no fault of their own for many reasons.

@Cured-dk says he was 90% sure he found a cure for his brain fog. I just don't get it why some members on this forum almost routinely castigate newcomers who generously come here to share their improvements. And for the seeming transgression of not being technically perfect with their words--by some unknown, indecipherable PR standard??? No wonder so many of them make one or two posts and then disappear.

When a new member comes here to 'generously' share improvements that may not be related to ME/CFS, it is fair enough to point that out. Every time a member has questions or comments that are relevant to a thread, it is not okay to accuse them of verbally castigating members when they are simply trying to make a point regarding what the forums are for, what ME/CFS is and isn't, and really that is unfairly criticizing members who simply take the time to answer questions and care what the focus of Phoenix Rising is supposed to be.

Obviously not every one is going to agree with what I have written but we need to have boundaries and focus to keep Phoenix Rising about ME/CFS. After-all, we are a Non-Profit for ME/CFS.

Please stop arguing about this. Some really good points have been made and maybe if members are interested in discussing this further, we can split the thread and put the relevant posts in the Moderation forum. The bottom line is though -- we are a website for ME/CFS.

Thank you.