Absolutely NOTHING is positive?

[xchocoholic]

Hi @Jonathan Edwards

Thanks for posting this. I'm not medically trained so I'm still trying to get a grasp on what's known and what tests actually show.

I was a programmer analyst tho and based on my experience, there's no mystery as to why computers crash. There's just software and hardware. Hardware crashes are unavoidable unless there's an obvious defect. But that's not a mystery.

Sometimes software crashes can be the result of improper or lazy software writing and testing. The Obamacare rollout comes to mind.

Tc . X

Edited. Waaaay too chatty. Lol.

 

[Jonathan Edwards]

I was a programmer analyst tho and based on my experience, there's no mystery as to why computers crash. There's just software and hardware. Hardware crashes are unavoidable unless there's an obvious defect. But that's not a mystery.

And software crashes are the direct result of improper or lazy software writing and testing.

I think the situation may be a bit more complicated and more interesting, though. Once an internal signalling system gets beyond a certain level of complexity I am fairly sure that there is always a trade off between computational power and resistance to crashability. Any software system that can be hacked is crashable and that probably applies to virtually all software systems designed by the least lazy software writers. The more flexibility and range of computational performance built in to the system the more opportunities there are for generation of loops.

So I agree that there is no mystery - but it is inherent in building a very complex system. And note that biological systems have to work on signals depending on the continuous variables of chemical reactions and may be about a million times more complex than any written software - there are maybe a trillion cellular units, each carrying complex information in the distribution of 40,000 different proteins.[/quote]

 

[xchocoholic]

Hi @Jonathan Edwards

When I was first learning how to code, I took down a large company wide computer system via an infinite loop that kept building a bigger and bigger file so I get this. But I also knew what had happened because the evidence was there. Everywhere. Literally. Lol. But obviously the problem was in my code. I was cheered in the lunchroom. Lol.

I'm beginning to understand how biological processes can't be monitored like computer processes. The data either isn't available or can't be measured properly. Or no one has looked. Our govt has ignored cfs for decades.

Luckily lazy programmers weren't the norm where I worked. Fwiw tho, I said lazy programming and testing, not programmers. Big difference. Most, 95% were talented.

Imho, the complexity of a computer system really shouldn't be the cause of crashes. Complex computer systems are broken down into the smallest possible tasks and / or programs so data or computer errors can be analyzed and corrected.

I honestly don't know why so many companies are on the internet. Before the internet everything was in house and untouchable to anyone on the outside.

Gotta rest. Sorry for the book. Tc .. x

 

[Jonathan Edwards]

Yes, I agree that a programme written so that it cannot be overwritten should be possible to keep free of glitches - like the old ROM chips we put in BBCB computers for WordStar. But anything up and running in a memory site that is constantly being written to seems to me to be impossible to make foolproof. The sorts of problems I have dealt with in autoimmunity are a bit like getting command and data strings confused. My suspicion is that any 'software' that is flexible enough to be changed in response to need will suffer from at least a very tiny chance of making such a mistake. In biology we are dealing with such vast numbers of microevents that 'tiny chance', if it can snowball, has to be very tiny indeed to be harmless.

 

[A.B.]

My suspicion is that any 'software' that is flexible enough to be changed in response to need will suffer from at least a very tiny chance of making such a mistake. In biology we are dealing with such vast numbers of microevents that 'tiny chance', if it can snowball, has to be very tiny indeed to be harmless.

I think this is Gödel's incompleteness theorem applied to biology. Or the halting problem in computer science. You're most likely right.

 

[Jonathan Edwards]

I think this is Gödel's incompleteness theorem applied to biology. Or the halting problem in computer science. You're most likely right.

Gödel's old turkey gets blamed for rather a lot to my mind. But I think I agree that it is something a bit like that. A sort of 'no such thing as a free lunch'.

 

[xchocoholic]

[quote="Jonathan Edwards, post: 507789, member:

The sorts of problems I have dealt with in autoimmunity are a bit like getting command and data strings confused.

My suspicion is that any 'software' that is flexible enough to be changed in response to need will suffer from at least a very tiny chance of making such a mistake.

In biology we are dealing with such vast numbers of microevents that 'tiny chance', if it can snowball, has to be very tiny indeed to be harmless.[/quote]

Lol. Ah, yes the good old days. We used punch cards in my first computer programming classes.

I was disabled before the internet was invented so I never had to worry about computer programs being hacked. I can't believe how many companies are connected to the web. Esp those old enough to know the benefits of in house computing.

Can you explain the rest of your comment ? How can command and data strings get confused ? Command strings would be consider software, correct ?

All computer software changes are tightly controlled via specific code. Even by hackers. I can't imagine that kind of control working in biological processes.

I have a basic understanding of autoimmunity.

Thanks. X

 

[Alea Ishikawa]

Childhood and adolescence pattern ME/CFS spills over into college years. The cut off for the statistical analysis at 16 or 18 is to do with medical practice, not patients. If recovery in childhood and adolescence is 80% and in adults in total is 20% I think we can at least expect a 22 year old onset to have a 50% chance of recovery on statistical grounds. My suspicion is that it may be closer to the 80% because the division in the quoted figures probably has no biological basis (just whose office you go to).

Jonathan - I'm curious where your suppositions come from. My numbers are from here. Another article here.

By definition, an adolescent would be a teenager (13-17). Regardless the nation, it seems a 22-year-old is an adult in studies.

On the Smith et al. study, only 4 out of 15 (26.7%) adolescents recovered. The other 4/15 had marked improvement over 6 months but were not recovered. In contrast, 7/15 did not improve or became worse.

Children can be diagnosed after 3 months, adults at 6. So, the game can drastically change between 17 and 18 years of age, for example. Someone who has been sick for 3 months is much more likely to recover than someone sick for 6.

On statistics: In 2013, the U.S. population was 23.3% children. The 2011 UK population had a similar percent of children. Adults are more likely to have CFS. Specifically, young/middle-aged adults are more likely to have CFS. So, there would be more data points in the adult and specifically young/middle-aged adult range. That's your cluster and it is captured in what is generally representative of the disease population as a whole.

Given this information, I imagine a 22-year-old's % is weighted more toward the adult population vs. pediatric.

I entirely agree that it is important to keep in mind other diagnoses and consider further tests on that basis, but most of the discussion we are getting is about unproven tests supposedly relating to ME that I suspect are a complete waste of time for Automobile.

I agree it would not make sense to run tests that would have no potential bearing on treatment approach. However, a positive EBV test can be useful in ME/CFS (e.g. antiviral). If the test was negative thereafter, I'd consider moving on to something else.

What other tests are you referring to?

I would bet that you will be much better in 3 years time, Automobile. I have no idea why but I think you will, if you have ME. If I were you I would not poison myself with medicines and 'supplements' in the meantime.

I am actually really surprised to hear you say this. Rich Van K. and Freddd both created methylation cycle protocols, which have significantly improved folks' quality of life. Many on antivirals and/or antibiotics have recovered or went into remission or improved their quality of life. And so forth.

I would avoid fake supplements, of course, but genuine ones can be useful. Even something like fish oil can help reduce headache severity and turmeric curcumin is associated with increasing intracellular glutathione and breaking down fibrin deposits associated with the hypercoagulation found in ME/CFS.

Meds and supps can take me from around 1-3 to a 7 on the PR scale. That can be the difference between being mostly bedbound/floorbound/couchbound and being able to drive and work a basic desk job (albeit with considerable difficulty).

Also... Jonathan and Automobilie - I'm in my 20s. I got severely sick over 3 years ago and it wasn't until recently that my physician suspected CFS and I got on this forum. 3 years did not cure me. But meds and supplements can make a huge difference in quality of life, not to mention the ability to pay bills.

 

[Jonathan Edwards]

How can command and data strings get confused ? Command strings would be consider software, correct ?

All computer software changes are tightly controlled via specific code. Even by hackers. I can't imagine that kind of control working in biological processes.

This is complicated but I will have a go. My understanding is that within standard computer code strings of digits are allocated to either 'command', or at least 'designation' status and 'data' status. Thus a set of 0s and 1s will encode, very crudely: 'your next data value will start in X bits time': 'data' value': 'there is more of the same value in X bits time' : 'more of that value': 'that is the end of that data value', there will be a new data value in X bits time. The simplest way for this to go wrong would be for one digit to be missed out in transmission, with the result that data might be interpreted as command and vice versa. I realise that systems are pretty foolproof to that but more complicated errors obviously do occur. When a file is being transferred it will contain both sets of values and indications on how those sets of values are to be interpreted. So if you try to open a file in an old version of the programme you may get nonsense because the interpretation commands have been reallocated. You may get a screen full of what ought to be text data but is in fact a whole lot of commands in some intermediate level language.

In biology there are almost no true strings, except DNA. So DNA has base sequences that say 'your next bit of data starts at the end of this TATA sequence, etc. If chromosome translocation re-stitches two bits of DNA at the wrong place you could get the equivalent of the one digit missing mistake. Some cancers are now known to be consistently generated by this sort of mistake. In fact this is usually a matter of applying a command to the wrong data. But it could potentially lead to synthesising a protein that was a meaningless sequence of amino acids read off some bases that were supposed to be a transcription factor binding site.

But to get to the immune system: There are no string sequences involved in the signalling here, but instead there are complex steric patterns. T cells handle data a bit like a computer in that they will only see an antigen if it has been cut down to a peptide and inserted in a groove in a 'command' molecule (MHC) plus several flanking command molecules. It is quite hard to see how a T cell could get hoodwinked here.

On the other hand B cells are not quite so fussy. They cannot afford to be because their antibodies need to recognise antigens whole, as they would be found lurking in tissue. But they also require 'data' (antigen) and 'command' (often called danger) signals. The simplest command signal is another antibody. So if a B cell picks up antigen X on its own, by the B cell's surface antibody sticking to epitope shape P on X the B cell is likely to die because there is no 'danger' command signal. If the B cell binds to epitope P of X when X is also already bound by another antibody sticking to another epitope Q then the Fc portion of the second antibody, through complement or other means, can provide a danger signal so the B cell proliferates.

So in this situation there are no strings but we have data signals that are antigen and command signals that are, in this case, other antibodies. But what would happen if the B cell decided to bind to the antibody bound to Q on X, rather than P on X itself? That is, what would happen if it is a rheumatoid factor B cell? It would be taking a 'command' signal as its 'data'. The story gets a bit complicated from here on but basically it means that this B cell can be told to proliferate whatever X is.

That's the sort of idea. For antinuclear antibodies it is thought that Toll like receptors are the 'command' signal binders and there is a problem because DNA and nuclear proteins can bind TLR directly. I hope that makes sense.

 

[Jonathan Edwards]

Jonathan - I'm curious where your suppositions come from. My numbers are from here. Another article here.

By definition, an adolescent would be a teenager (13-17). Regardless the nation, it seems a 22-year-old is an adult in studies.

Children can be diagnosed after 3 months, adults at 6. So, the game can drastically change between 17 and 18 years of age, for example. Someone who has been sick for 3 months is much more likely to recover than someone sick for 6.

On statistics: In 2013, the U.S. population was 23.3% children. The 2011 UK population had a similar percent of children. Adults are more likely to have CFS. Specifically, young/middle-aged adults are more likely to have CFS. So, there would be more data points in the adult and specifically young/middle-aged adult range. That's your cluster and it is captured in what is generally representative of the disease population as a whole.

Given this information, I imagine a 22-year-old's % is weighted more toward the adult population vs. pediatric.

I may be wrong but it seems to me that you are assuming that there are two maybe more or less Gaussian populations here, one childhood and one adult. And as long as you in the adult box your stats fit that box. But I don't think that can be right. If the recovery rate for, say, five year age bands, were to be plotted out against age I see no reason to think that we should expect a sudden jump at age 20. It is surely at least as likely that there will be a rather smooth transition. (In fact it looks as if Automobile was 20 or 21 when this started.) Even if the average adult recovery expectancy was reached at 25 we would surely expect the rate for 20 to be about half way between that and for 15? I don;t understand the way you are reading the data. Figures for populations are not figures for individuals.

 

[Jonathan Edwards]

I agree it would not make sense to run tests that would have no potential bearing on treatment approach. However, a positive EBV test can be useful in ME/CFS (e.g. antiviral). If the test was negative thereafter, I'd consider moving on to something else.

What other tests are you referring to?

None. I don't think we have any reason to think that an antiviral is justified if an EBV titre is high to be honest. It just isn;t that simple.

I am actually really surprised to hear you say this. Rich Van K. and Freddd both created methylation cycle protocols, which have significantly improved folks' quality of life. Many on antivirals and/or antibiotics have recovered or went into remission or improved their quality of life. And so forth.

I would avoid fake supplements, of course, but genuine ones can be useful. Even something like fish oil can help reduce headache severity and turmeric curcumin is associated with increasing intracellular glutathione and breaking down fibrin deposits associated with the hypercoagulation found in ME/CFS.

Meds and supps can take me from around 1-3 to a 7 on the PR scale. That's the difference between being mostly bedbound/floorbound/couchbound and being able to drive and work a basic desk job (albeit with considerable difficulty).

Also... Jonathan and Automobilie - I'm in my 20s. I got severely sick over 3 years ago and it wasn't until recently that my physician suspected CFS and I got on this forum. 3 years did not cure me. But meds and supplements can make a huge difference in quality of life, not to mention the ability to pay bills.

That is your considered opinion, and you are entitled to it. But I am also encouraged to give my considered opinion on this website and I am afraid I think the methylation story makes no sense and antivirals are unproven. What worries me is that it may be all too easy for people coming on the site to get really depressed when they keep being told they are just not taking the right alternative medicines when in fact they may well get better anyway.

I am sorry to hear that you are not better yourself but you may not have noticed that I was trying to be at least a little optimistic for Automobile because it can help, whatever is wrong with you!

 

[xchocoholic]

Hi @Jonathan Edwards

The computer part made sense but I'll need to review the rest of it.

Fwiw tho, computer programs don't wait for data. They're completely off but in memory in case they're needed. Kinda like a toaster. Lol.

What you see when you 0's and 1's is called a dump. Or at least it was. It's only generated when there's an error. Typically what's called a fatal error. It contains code and data but the sole purpose of the dump is for computer programmers to find the error.

Most programs aren't written in 0's and 1's. They're written in a more normal language, source code, and converted to 0's and 1's, object code by running a conversion software product. Object code is all a computer understands.

Once I worked with an offsite software provider who had us fix his coding errors by plugging 0's and 1's into his object code. That was the only way he had to make his corrections at our site. We would've corrected the source code and generated new object code. I'm assuming a hacker changes object code.

Thanks for the feedback. It helps me to compare our bodies to a computer. Tc .. x

 

[Alea Ishikawa]

I don't think we have any reason to think that an antiviral is justified if an EBV titre is high to be honest. It just isn;t that simple.

True. If I were an average person with basic EBV, I would wait for it to resolve on its own. However, recurring/chronic EBV may be fought with an antiviral. Another article is here.

I would be careful and research the treatment, weigh the cost, etc. It might make sense to try to tough it out or address the B cells another way. But if an antiviral is the only way to increase quality of life or become recovered at this point in time, especially after waiting it out for years, then treatment is something to consider.

I may be wrong but it seems to me that you are assuming that there are two maybe more or less Gaussian populations here, one childhood and one adult. And as long as you in the adult box your stats fit that box. But I don't think that can be right. If the recovery rate for, say, five year age bands, were to be plotted out against age I see no reason to think that we should expect a sudden jump at age 20. It is surely at least as likely that there will be a rather smooth transition. (In fact it looks as if Automobile was 20 or 21 when this started.) Even if the average adult recovery expectancy was reached at 25 we would surely expect the rate for 20 to be about half way between that and for 15? I don;t understand the way you are reading the data. Figures for populations are not figures for individuals.

Yes, distinct populations. The diagnostic criteria can differ between children and adults, which I think can play a significant role in children having a higher recovery rate, so the population is split.

We could further divide the child population into two more populations: young child and adolescent. Though I have limited data, it looks like young children have the highest percent of recovery. Adolescents are significantly closer to the adult %. For the purpose of argument, let's say the representative adolescent age is 15 for that aforementioned ~26% chance of recovery.

In the adult population, the "weight" seems to be toward young/middle-aged adults. Young/middle-aged adults are 20-64. Again, for argument's sake, let's average the age to 42 and the recovery rate to 7.5%.


If we take 26% at 15 and 7.5% at 42, that leaves us with a change of 18.5% over 27 years or 0.69% per year. So, a 22-year-old might expect ~21% chance of recovery. Per your point, this is higher than the general adult population, but significantly lower when compared to the recovery rates of young children.

If you have a link to more information, I would be interested.

 

[globalpilot]

Johnathon,
I'm a bit confused why you say nobody knows what tests such as EBV and NK cell means. I assume you mean NK cell activity. It seems to me it could be a useful biomarker.
2 of the few recoveries I know of are of people that tested and treated everything found normal.
GP

 

[Jonathan Edwards]

Johnathon,
I'm a bit confused why you say nobody knows what tests such as EBV and NK cell means. I assume you mean NK cell activity. It seems to me it could be a useful biomarker.
2 of the few recoveries I know of are of people that tested and treated everything found normal.
GP

NK cell activity can be very low in a variety of other conditions so it is never going to answer the question 'is this ME or some other rare condition?'. It may be a biomarker for a particular type of ME, amongst people who clinically have ME, but so far there seems no agreement on the consistency even of a statistical finding. When I say we do not know what it means I really mean that we do not know what implications it has for how one should think about treatment. Low readings in a killing assay do not necessarily mean anything about what NK cells are doing in the body. Since the discovery of NK receptors it has become clear that the NK system is extraordinarily complex.

 

[Automobilie]

Just hit another crash. I usually suddenly become VERY weak, diarrhea, become nauseous, and my appetite tanks. Flu hasn't been a thing much, but I've been crashing easier and easier. BS and BP are ok right now too...

 

[caledonia]

Hi all, I've been lurking here for quite a while and finally made a profile. I'm a 22 year old college student (Was I guess) and came down with something the start of 2013. The first year, I'd get crashes that were extreme nausea, weakness, and would lose my appetite.

My suggestion would be to get a stool test to see what's going on with your gut. I had similar symptoms, along with simliar flu-like aching that you're reporting and it turned out to be candida.

While this may not be the totality of your problem, and even if you do turn out to have ME/CFS, this is the best place to start. Having this one aspect under control will also make you feel a lot more comfortable.

See the 4R Gut Rebuilding Program in my signature links below for more info.

 

[Automobilie]

But the thing is the flu feeling is much rarer than the other symptoms. It'll hit a few days out of the blue and then be gone for awhile. Sorry, brain just went out. Three weeks ago I could get on the communter awhile and fiddle in the garage on projects. Now I can't leave bed more than five minutes and i'll still crash. It's verh scary. I already am underweight, I can't keep losing weight.

 

[WillowJ]

But the thing is the flu feeling is much rarer than the other symptoms. It'll hit a few days out of the blue and then be gone for awhile. Sorry, brain just went out. Three weeks ago I could get on the communter awhile and fiddle in the garage on projects. Now I can't leave bed more than five minutes and i'll still crash. It's verh scary. I already am underweight, I can't keep losing weight.

that is scary. I've been in the very underweight place, so I understand. I'm sorry, and I hope you figure out something that helps soon. I was sent to a GI doc because that seemed obvious, but in the end it was a cardiologist who was able to help in my case.

 

[Automobilie]

How did the cardio help? Did a tilt table and echo, all good, but my hr was 120 the whole time. Been upping salt alot and elevated my bed a couple inches which I think is helping, but laying down leaves me feeling weak and heavy.