Do MEs cause CFS?

[Leopardtail]

I checked out 'methylation & CFS' on Pubmed and found ONE PAPER PUBLISHED LAST MONDAY. It reports some different patterns of methylation in white cells in CFS. I am not sure what to make of that but at leas t there's one paper out there I can read!

that was interesting, but a slight curved ball. It's not talking about the process of creating Methyl groups, but about their application to genes.
Richard van Konenynberg did produce a fair amount of work, but it was never 'peer reviewed and published'. I am busy for a couple of weeks, but happy to email the stuff when I can find it.

 

[Ninan]

has he published anything on this as yet?

Have you seen Jonas Blomberg's study? Read about his discovery here (it's in the end).

@Jonathan Edwards comments on this study in the middle of this thread.

 

[MeSci]

I am a medical scientist not a doctor

I don't recall you saying this before. Have you worked formally in the field, or just have relevant qualifications?

 

[MeSci]

Obvious question here, has anybody considered self administration of IV saline?

I understand that at least one person here is already doing it.

 

[Ninan]

I understand that at least one person here is already doing it.

I've had IV saline for OI. Works fine as long as I'm not in my worst state (when none of my other medications work). Then none of my OI treatments help. This study says it may be because of altered plasma renin activity. Dr Bell says IV saline doesn't work for those who are the least and most affected by ME.

 

[MeSci]

I've had IV saline for OI. Works fine as long as I'm not in my worst state (when none of my other medications work). Then none of my OI treatments help. This study says it may be because of altered plasma renin activity. Dr Bell says IV saline doesn't work for those who are the least and most affected by ME.

I'm one of the few sufferers with hypertension. I have just created a poll to get an idea of how common this actually is in ME.

 

[MeSci]

ME5 sounds interesting, but most patients exhibit low NK cell numbers/activity and thus very likely low gamma interferon, which may also explain problems with degranulization in lymph nodes and other tissue.

Post #2 in this thread quotes:

 

[MeSci]

@alex3619 Do you have any thoughts on how that scenario would lead to the initial creation of the kind of auto-reactive B cells which appear to be crucial to perpetuating the illness process ?
To me, the answer to that question is probably a big part of the puzzle in (at least) ME1 & ME2

Not sure if my blogpost here relates to what you are talking about, but if you look at the section 'Connections between leaky gut and autoimmunity' you will find a link to a paper about how leaky gut may lead to autoimmunity. Here is the link to the paper.

 

[ukxmrv]

Obvious question here, has anybody considered self administration of IV saline?

I had saline infusions are part of another drug treatment (with IVIG) and didn't notice any positive changes in my health so I have not re-visited that idea again.

 

[thegodofpleasure]

Here's a recently published paper on Autoimmunity and the Gut : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4036413/

 

[MeSci]

Here's a recently published paper on Autoimmunity and the Gut : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4036413/

I wonder what @Jonathan Edwards thinks of this article. The author seems a bit 'alternative' - not that I necessarily see that as a problem, but I am having trouble finding website info about him or his 'Wellness Center' in Florida.

 

[mellster]

Post #2 in this thread quotes:

Hmm, could it be interpreted that there is an initial strong response with much release of Interferon-gamma, but as the condition progresses, that immune response weakens?

 

[rosie26]

@rosie26, I think that is indeed the case, that bacteria can send alarm signals to a sensitized immune system, and clearance or non-clearance might be only part of it. We have inbuilt sensors for things like bacterial lipopolysaccharide (LPS). We have learned responses too. It is often the case that high levels of LPS are found in ME patient blood. LPS is a what is called a superantigen, it has the capacity to massively induce an immune response. Immune cells called gamma delta T cells can migrate to sites of high LPS, and there they can induce or suppress the immune response. Yet LPS is only one common bacterial substance, there are others. It is also the case that we carry billions of bacteria in our body. If detox fails, particularly in the gut lining and liver, then products from these bacteria can make it to the blood and general immune system. I have speculated about this before, and always wanted to write a blog on it, but it still sits half finished several years later.

Thanks Alex. This really makes sense to me. Now where do I go from here. How do I get tested and treated ?

 

[Jonathan Edwards]

many people with ME suffer a delayed reaction with PEM. Exercise today, first feel like hell tomorrow |& after sleep. How would the vascular hypothesis explain that?

Yes, I realised that this was what was bothering the back of my mind although I could not put my finger on it at first. A primary problem with the autonomic system would not seem to get the time scale of symptoms right, I guess.

 

[Jonathan Edwards]

I wonder what @Jonathan Edwards thinks of this article. The author seems a bit 'alternative' - not that I necessarily see that as a problem, but I am having trouble finding website info about him or his 'Wellness Center' in Florida.

It seems to be a list of all the fashionable and not very rigorous ideas about autoimmunity rolled into the usual rag bag - the sort of thing that scores of trainees will write to get themselves a publication without having any in depth knowledge of the problem. Nothing actually adds up to a proper mechanism. There are a lot of accurate individual facts there but the overall picture is very naive, I think. Handle turning I would say, and maybe advertising!

 

[Leopardtail]

I am sorry I am a bit late with my reply but I read that you have found the interesting article that made some of us excited when posted here. Maybe one-carbon metabolism as a synonym of methylation is more familiar.

Late independent researcher Ph.D. Rich Van Konynenburg proposed that ME is caused by , not only has a connection to, a depletion of glutathione due to a blocked methylation. I shouldn´t try to present this further as English isn´t my first language, but I just wanted to introduce his thoughts. The hypothesis hasn´t been proved scientifically yet, but it works for quite a few people with ME . B12/folate protocols are used mainly by some doctors in USA . I think Dr. Sarah Myhill U.K. uses a similar protocol too. Dr. Neil Nathan and Rich Vank made a clinical study that is presented in the seminar below.

This article, I think, is the best presentation of the hypothesis (2007) :
http://phoenixrising.me/treating-cf...gue-syndrome-cfs-by-rich-van-konynenburg-ph-d

In this video recorded seminar he goes into details (2011)
http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/

There are also slides from the seminar that are possible to follow as a rather complete presentation too
http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_1R.pdf
http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_2.pdf

The presented treatment protocol was the actual at that time, October 2011, but was later changed a bit before Rich Vank died 2012.

There is no evidence for B12 and folate metabolism being different to my knowledge -yet. So far there is only an experience by some ME doctors ( e.g in Sweden and USA) that most of their their patients get better from rather big and frequent doses of B12 and folate. The eventual impact of MTHFR polymorphisms are investigated in an ongoing study in USA.

I hope this can give an idea of methylation issues and its , at least connection, to ME. Thank you for reading this, and for your interest in our struggles for diagnose and treatment. It means a lot to us.

part2 links to part 1R, correct URL below
http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_2.pdf

 

[Leopardtail]

I understand that at least one person here is already doing it.

was a response to Tanya, anybody meant 'in her medical team'....

 

[Ninan]

Yes, I realised that this was what was bothering the back of my mind although I could not put my finger on it at first. A primary problem with the autonomic system would not seem to get the time scale of symptoms right, I guess.

I've always taken that delay as a sign of some kind of immune activity or inflammation. The time between overexertion and reaction (PEM) is about the same for me as the time between overexertion (lifting something, doing too much garden work) and pain for my dad who has AS.

It differs too: The more I've overdone it, the longer it takes until the crash, and of course, the worse it gets. If I've done a little bit too much I get worse later during the day. If I've done way too much it can take four or five days, or more. During which I feel just fine (well, for having severe ME) or even better than usual. Then I crash, badly. It's tricky that way.

 

[Leopardtail]

I don't recall you saying this before. Have you worked formally in the field, or just have relevant qualifications?

Qualification only, doing my first piece of research now. Still at a very analytical / preparatory stage looking into energy management and the interactions of cellular metabolism and the endocrine manifestations of ME. Essentially it's a very complex network analysis. Like pretty much all researchers don't discuss it too permit later publication.

 

[alex3619]

Thanks Alex. This really makes sense to me. Now where do I go from here. How do I get tested and treated ?

Since we don't really understand the problem, then treatment tends to be hit or miss. Its my Lemon Rule again. KDM does however attempt to deal with this, but LPS from the gut is only one of a range of potential issues. Testing is theoretically easier, but I am unsure how common commercial LPS testing is.