Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

[Steve.]

Hi Hip. Nice document.

I just read your evidence based document above. I was writing here to ask if you could include natural anti-viral treatments, as according to Wikipedia reference valganciclovir
anti-fertility effect, which is a real breaker. Plus many alternatives have serious effects, are heavily regulated here, and expensive.

I was going to originally try silver, vitamin C or olive leaf. The last two have had positive effect on me after weeks (6 weeks vitamin C). But I don't know how much is anti viral, and how much is just health (the olive leaf quickly produces complications somewhere in digestive tract I found.

Maybe it would be good to do a document entitled "Suggestive anecdotal treatments yet to be researched to completion". Dealing only in natural alternative medicine nutritional treatments. So medical people are not turned off.

I'm looking up a few things to talk to a doctor about starting a treatment clinic locally. I don't have the time to be much involved myself, but such resources help them step ahead.

I'm sorry if this has been covered before. Unfortunately there is no thread search function so I can see if this is covered in thread (if there is ever one, it would get good if it had OR and Not (-) and definite (+) operators so you can easily find all posts with any terms.

 

[Sushi]

Unfortunately there is no thread search function

There is an indirect thread search function that works like this: open any sub-forum and under ""Post new thread" type in a title for a thread that would cover your subject (don't post it though) and the software will show you the titles of any similar threads.

 

[Hip]

I was writing here to ask if you could include natural anti-viral treatments,

To my knowledge there are no herbs or supplements that have any decent antiviral effect against the viruses found in ME/CFS.

I recently spend a few months of solid work trying to find natural antivirals that were effective, but my pharmacokinetic calculations showed that natural antivirals are very weak in comparison to standard pharmaceutical antivirals. I am going to post these pharmacokinetic calculations in a new thread soon. I was doing all that work because I was hoping to find some herbs or supplements with potent effects in vivo, but unfortunately I found none.

You often see studies finding antiviral effects of herbs in vitro, but when you perform the pharmacokinetic calculation to see what antiviral effect the herb actually has in vivo (in the body), most turn out to be very weak in vivo.


However, some herbs and supplements have immunomodulatory effect which fight viruses by boosting the immune response, oxymatrine and inosine being good examples, and these are used by ME/CFS doctors to fight viral infection.

 

[Steve.]

Yes, olive leaf extract (green seems best) and vitamin C has that effect. Vitamin C also has a direct attachment effect to I read. But what about changing the pH of the body at the same time? Utlimately the effectiveness is the accumulative effectiveness. So, the suggestive rate of cure of natritional routines of treatment would be a starting place for research. Testing in the lab is fraught due to the amount of variable ways it can be regularly tested.

Silver was shown to have done sort of effect that way, but I think it is more direct. I make my own for personal use and I can tell you the stuff is temperamental. I have noticed using on skin, it is easy for it to not be really right and loose a effectiveness to varying degress. It can go off effectiveness after making and it is hard to make most effective.

The basis of silver water (ionic or coloidal) is purity and size of silver particles. Depending if you are going ionic or coloidal, you can make too much non ionic or too much non coloidal. As the particle size increases or are attached with impurities the effectiveness can deteriorate, and varioys nonpure compound recipes have issues.

Trying to get your water purer is an issue. I've tried many repeat distilling runs to get down impurities, but eventualke concluded the stainless steel distiller (and maybe glass) was crontrubuting and probably defeating the attempt. I have some testing equipment and will try again.

I have only made some a lot more effective (a number of times). I am looking into making a technique to produce more effective silver. Water purity is still an issue.

 

[Steve.]

There is an indirect thread search function that works like this: open any sub-forum and under ""Post new thread" type in a title for a thread that would cover your subject (don't post it though) and the software will show you the titles of any similar threads.

Hi Sushi. I meant search in the thread, in post bodies, for a bunch of related terms in individual posts. This helps locate if what you want to discuss has been discussed. I've seen it on forums.

 

[Steve.]

Thanks for the PM sushi. Under the little magnifier.

 

[Steve.]

I've looked up Artesunate, and found it is an compound related to Chinese (sweet) wormwood Hip. Which is interesting, because 20 years ago a herbalist put me on Chinese wormwood and cats claw (etc), which has action in CFS and anti viral. I put the short term gains down to an extract that used grapeseed, green tea and something else (can't remember). They had some other pill that stopped blood cells sticking together.

The sweet worm wood active ingredient is said to be a lot less effective. But maybe that one might have some action worth future scrutiny.

 

[tiredowl]

Great thread!

I wonder if Fucoidan is helpful for viruses.
''Fucoidan is known to exhibit powerful anti-viral properties. Research has shown that fucoidan can prevent viral infection by blocking the entry of viruses into cells and inhibiting the adhesion of viruses to host cells.''
It's derived from seaweed.
Also it increases Natural Killer Cells and used for cancer.

 

[Hipsman]

I have been refering to your map for a year now, and only today discover that "Page index" is actually a very helpful button! Maybe it's just me, but I would suggest to reveal page index menu by default.

 

[Hip]

I have been refering to your map for a year now, and only today discover that "Page index" is actually a very helpful button! Maybe it's just me, but I would suggest to reveal page index menu by default.

Thanks for your feedback.

OK, I've changed it so that the page index now shows by default (to see the changes, you may have to reload the roadmap webpage in your browser while holding the shift key down, to force a cache update, otherwise your browser may just show you the old version of the roadmap from the browser cache).

I was debating anyway whether to show the index by default or not. Since ME/CFS patients are sensitive to information overload, I was not sure whether showing it was a good idea. But you may be right that it's better to show it.

 

[Hipsman]

I was debating anyway whether to show the index by default or not. Since ME/CFS patients are sensitive to information overload, I was not sure whether showing it was a good idea. But you may be right that it's better to show it.

I think back then when I found the roadmap I was overloaded by looking for category I was interested in, I was frequently visiting it and every time while scrolling tried to determine where I am by reading random portions until I found what I was looking for.

 

[Hip]

I think back then when I found the roadmap I was overloaded by looking for category I was interested in, I was frequently visiting it and every time while scrolling tried to determine where I am by reading random portions until I found what I was looking for.

That's interesting. Do you have any suggestions about making the roadmap more navigable and accessible?

Do you think the roadmap would work better if it was split across say 6 or 7 pages, with one page for the 1st round tests and treatments, another page for the 2nd round tests and treatments, etc?

That's something I've thought of doing, but I am not sure if it will make it easier for people or not. Personally I tend to prefer it when the information is contained in one page. In a long page, if I am looking for something, I will usually use the browser Find command, and look for a specific word.

Another idea might be to keep everything in the same page, but color-code each of the 1st, 2nd, 3rd and 4th round sections, so that you can know where you are by the color. I find that if you place "landmarks" within a document (landmarks could be diagrams, images, icons or colors) then people remember where they are by these landmarks.

It's particularly hard to read text when you have brain fog, so anything to make reading and assimilating the info easier would be worth adding to the roadmap.

 

[Hipsman]

That's something I've thought of doing, but I am not sure if it will make it easier for people or not. Personally I tend to prefer it when the information is contained in one page. In a long page, if I am looking for something, I will usually use the browser Find command, and look for a specific word.

That's how I like it too.

Another idea might be to keep everything in the same page, but color-code each of the 1st, 2nd, 3rd and 4th round sections, so that you can know where you are by the color. I find that if you place "landmarks" within a document (landmarks could be diagrams, images, icons or colors) then people remember where they are by these landmarks.

I like color-coding idea, maybe different background(light purple that's under the page) color for each section.

It's particularly hard to read text when you have brain fog, so anything to make reading and assimilating the info easier would be worth adding to the roadmap.

As a beginner I was particularly confused with what tests to do and some tests were not available. My idea is to have separate page between Roadmap and Mini Roadmap or to the right of Mini Roadmap with chronic conditions that can cause ME/CFS, so that some people may grab to something they have and try treating it first, it might be easier to convince Drs to order tests that way and also convince caretakers to take it seriously - "I have X condition that is linked to cfs, so it's not just all in mind". I realize it can be done from original roadmap, but I think it's hard for not medically knowledgeable beginners to navigate it while looking for this. But don't exclude these conditions from original map for those who prefer it that way.
I now realize that it's mostly 4TH ROUND things that would classify for that page and some of them are hard to diagnose, like Vaccination trigger or Jaw bone cavitation infection, maybe simplify or exclude some of them. This may particularly help for rare causes since someone could try treating EBV, other infections or immune deficiency, when in reality the core reason for example is sinusitis, and Sinus Surgery may resolve it. I know some people who treated EBV or HHV7 after positive tests and only got worse after.

 

[Cherry]

I noticed that cranial-cervical instability and related conditions was mentioned in the 4th Round. Please correct me if I am wrong, but it seems to me that for most people, treating infections does not cure ME, and at best offers some lessening of symptoms for some period of time. (I really don't know if this is true, so help me out here.) On the other hand, treating CCI, AAI, Chiari, etc has apparently cured or greatly improved many who have pursued this diagnosis. I know the medical establishment is not on board with this yet, and those who have seen the most benefit have undergone surgery or even multiple surgeries, but I would like to see more attention paid to this.

 

[Hip]

Given the experiences of Jeff W, Jen B, and others, this seems like something worth looking at.

Indeed, and the roadmap contains quite a bit of info about CCI and related conditions — see here. The CCI info is currently placed towards the end of the roadmap, as at this stage we do not know how common it is in ME/CFS patients.

 

[Hip]

My idea is to have separate page between Roadmap and Mini Roadmap or to the right of Mini Roadmap with chronic conditions that can cause ME/CFS, so that some people may grab to something they have and try treating it first, it might be easier to convince Drs to order tests that way and also convince caretakers to take it seriously - "I have X condition that is linked to cfs, so it's not just all in mind".

I am not really following what you are saying here, Hipsman, can you please explain it again. When you refer to the "chronic conditions that can cause ME/CFS", do you mean the diseases which have similar symptoms to ME/CFS, such as lupus, hypothyroidism and celiac?

I've added the color-coding to the roadmap, by the way.

 

[Cherry]

the roadmap contains quite a bit of info about CCI and related conditions

I
Sorry, I should have spent more time reading before replying. This really is a excellent, thorough document. Thanks so much for putting it together!

 

[Hip]

Thank you @Cherry. To respond to your edited post: at the moment nobody knows how common CCI etc is in ME/CFS patients. And at the moment we also don't really have any statistics for how successful surgery is for curing or improving ME/CFS linked to CCI etc. A few were cured, but other cases have just gone from severe to moderate ME/CFS (although they may still improve more over time). Once we get more info and understanding on CCI in ME/CFS, then if necessary it can be moved to the top of the roadmap.

I started a survey for ME/CFS patients testing for CCI here, in the hope of getting more info on the subject. Though one of the problems with the survey is that people who are diagnosed negative for CCI and related conditions don't tend to answer the survey, because once they find they are negative, they tend to lose interest in the subject.

 

[Hipsman]

I am not really following what you are saying here, Hipsman, can you please explain it again. When you refer to the "chronic conditions that can cause ME/CFS", do you mean the diseases which have similar symptoms to ME/CFS, such as lupus, hypothyroidism and celiac?

no, not the "Ruling Out Diseases With Similar Symptoms to ME/CFS" conditions.
By "conditions" I meant ME/CFS causes that are separate conditions, like Physical trauma, Sinusitis, etc - things that can cause ME/CFS (those that you already have in your map).
My idea is to duplicate part of roadmap for this new section. I want it to include "conditions" that are not hard to diagnose or can be diagnosed at home: Varicella zoster virus reactivation, Irritable bowel syndrome, POTS, Pesticide exposure, Physical trauma (eg: car accident), Sinusitis, Ciguatoxin exposure, Meningitis. I don't know enough about these to say exactly witch conditions to select.
My initial idea is that someone new to ME/CFS can do some tests at home and if they find VZV reactivation or Sinusitis or Physical trauma or else, they will make mental connection that their ME/CFS can be connected to that "condition".
I find that I was lost and too focused on the "Popular causes" like EBV or leaky gut, becouse I didn't make good mental connection with "condition" I have that is considered as rare cause of ME/CFS. This is becouse it was at the bottom of roadmap and I unconsciously perceived it as much less important to investigate (Sinusitis in my case, and I had known that I have it before ME/CFS onset. Indeed I could've found effective sinusitis treatment earlier if I considered this"rare" cause more seriously).
I think this new section will help some people not to fall in this "thinking fallacy" when evaluating connection between their ME/CFS and "condition" they have (if they have one), that is known to cause ME/CFS.

I've added the color-coding to the roadmap, by the way.

It's more readable, but I just realized the red to orange and then green to blue progression makes me unconsciously perceive first half of the map as MUCH more important that the other half(( Almost to the point where things listed under first half is bad and things listed under second half and second is good...
changing colors to: 1 (#6F8E73) 2 (#634469) 3 (#066865) 4 (#958556) will stop this...

 

[CFS_for_19_years]

I still think sinusitis should be placed much higher on the list. I brought up the topic in 2014. Too bad you're not a doctor @Hip, I think your priorities on the Roadmap would be different. While some may find your roadmap helpful, I think it is misleading in some respects. Here is the 2014 discussion regarding sinusitis:
https://forums.phoenixrising.me/thr...tiate-mental-illness.33789/page-2#post-523807

If your ME/CFS began with a viral infection and you stay infected a long time, like several months, you are going to have more problems with bacterial infections such as sinusitis and ear infections. If you keep having repeated viral infections that last for months, being concerned about bacterial infections should be at the top of the list. I think by keeping sinusitis as the bottom of the list you are doing patients a disservice.

While I don't have the energy to create my own Roadmap, you do, and unfortunately, I think your lack of medical training/experience creates problems.