Naviaux et. al.: Metabolic features of chronic fatigue syndrome

[JPV]

To be fair to such interventions, after I got sick I got way MORE careful about my health -- don't we all? -- and noticed changes in health based on diet. However, having a decent diet in the first place doesn't seem to have saved me.

Diet helps me a lot. Food definitely is an issue as my symptoms often get worse, after a meal, if I'm not careful.

You say you're on a "decent diet" but the problem is figuring out what exactly constitutes a good diet. There is no real consensus on this subject. Factor in allergies, pathogens that thrive on certain foods, the inability of certain individuals to process fats, proteins, carbohydrates. It's a complete and utter puzzle.

I use Paul Jaminet's recommendations as a starting point and modify it to suit my needs. The key is learning to pay attention to your body's reactions and making adjustments.

 

[M Paine]

I'm going to take the opportunity to plug The Microbe Discovery Project.

They are trying to raise funds to not only independently replicate/validate these findings, but they will go above and beyond by including more deep sequencing/high throughput technology.

If you take a second to reflect on the importance of this study, and how it was made possible by modern high throughput analysis of many patient samples, then I think you will probably agree that this approach is the best moving forward to identify the possible underlying microbial causes and pathogens related to CFS.

The study will look at Metabolites, Microbes, Viruses, Proteins, Genetics, Epigenetics, and more.

Unlike Bacteria which are simple to sequence, Viruses need deeper sequencing. You can't just target primers at the highly conserved 16S Ribosomal subunit like with Bacteria. In the case of Viruses, the whole genome needs to be sequenced usually. VirCapSeq-Vert developed by CII is specifically designed to extend the capabilities of Virus sequencing, and will be used in this project.

Anyway, I'm not a salesman, and have nothing to do with this project, but I honestly believe that the quicker it's done, the quicker we will see real progress with this disease. I have donated, it's more than a worthy cause.

 

[JPV]

Yeah, in addition to diet, taking (the proper) probiotics has been the other approach that's helped me the most. There's definitely something there. I don't think it's the root problem but it seems to help alleviate some of the symptoms at least.

 

[Nielk]

Yeah, in addition to diet, taking (the proper) probiotics has been the other approach that's helped me the most. There's definitely something there. I don't think it's the root problem but it seems to help alleviate some of the symptoms at least.

This is not unique to ME. Most chronic disease can be improved with diet/supplements.

 

[M Paine]

taking (the proper) probiotics has been the other approach that's helped me the most.

I'd be interested to hear about your experience with this, is there another thread, or otherwise which you discuss this?

 

[alex3619]

I was part of the trial and put down 60 on the Karnofsky questionnaire. The Karnofsky scale is sciffoso in my opinion.
60 is no panacea. I'm in a recliner or bed most of the day. I need others to shop, cook and clean. I'm able to do basic care functions but can't drive or even handle being out of the house.

Yes, this is a quandary about that scale. Most cases of "60" with ME or CFS are, I suspect, really 50 or 40 and not getting the help they need.

 

[alex3619]

You say you're on a "decent diet" but the problem is figuring out what exactly constitutes a good diet

... for the individual in question. One person's good diet can be another's poison.

 

[JPV]

I'd be interested to hear about your experience with this, is there another thread, or otherwise which you discuss this?

This might be a good starting point...

Clostridium Butyricum - A Game Changer?

 

[JPV]

... for the individual in question. One person's good diet can be another's poison.

Yeah, I agree that there is no such thing as a "one size fits all" diet but I may not have been as clear about that belief as I intended.

 

[Forbin]

I'm going to take the opportunity to plug The Microbe Discovery Project.

Although I try to remain agnostic about chronic infection causing ME/CFS (I admit to a pet suspicion about fungi), if there's one place you'd want to look for elusive pathogens, it's the gut.

Here's an interesting article on how some viruses use bacteria in the gut to evade the immune system. They basically attach themselves to lipopolysaccharide molecules on the surface of a bacteria and "blend in."

Beneficial gut bacteria can become virus collaborators

As with poliovirus, MMTV sticks to the LPS molecule on the surface of gut bacteria. Kane thinks that it collects fragments of LPS that have dislodged from gut bacteria and are floating around the gut. LPS triggers the production of a chemical called interleukin-10, which tells the immune system to stand down. Gut bacteria use LPS as a backstage pass – it allows them to wander about their hosts without being attacked by security. By stealing this pass, MMTV can gain safe passage too.

http://phenomena.nationalgeographic...-gut-bacteria-can-become-virus-collaborators/

One of the researchers mentioned in the article above was able to protect mice from developing polio by greatly reducing their gut bacteria (presumably denying the polio virus its LPS "cloak").

 

[Gingergrrl]

Yes, this is a quandary about that scale. Most cases of "60" with ME or CFS are, I suspect, really 50 or 40 and not getting the help they need.

Sorry for the confusion on this but wouldn't it be the opposite? Meaning someone is really a 40 or 50 if they were not getting help but b/c they do have help (from a spouse, parent, caregiver, etc) then it appears that they are a 60 but they really are not? This Karnofsky scale confuses me a bit as it relates to the people in the study!

 

[M Paine]

Although I try to remain agnostic about chronic infection causing ME/CFS (I admit to a pet suspicion about fungi)

I agree with the sentiment, both in terms of Fungi, but also archea. I don't recall if Archea have the same conserved 16S ribosomal subunit as bacteria, but I know for a fact fungi don't, I don't expect anyone is doing mycobiome sequencing on CFS patients yet.

I remain open-minded about a pathogen being involved in general (or not) in my own case, but we have to look to answer the question. The thing is, there are going to be multiple ways to ellicit hypometabolism, the authors of this paper are clear about their thoughts.

There are likely multiple ways in which hypometabolism can be induced. Genetic susceptibility could enhance the activation of, or prevent the deactivation of host hypometabolic defence. Different persistent infections (Bacteria, Archea, Viral or Fungal) could trigger this. Or even a microbe could hijack and intentionally set off hypometabolism as part of a virulence factor. This strategy is common place when host immune features benefit a pathogen. Hypometabolic state could benefit a pathogen in some way. Then of course there are other environmental triggers, not to trigger anyone myself, but psychological stress for example could trigger epigenetic changes in a genetically susceptible person.


*Edit: apparently Archea do have 16S RRNA

 

[JaimeS]

I'm going to take the opportunity to plug The Microbe Discovery Project.

Then I don't feel bad plugging #MEAction's funding project! We are going to hire a PR firm for #MillionsMissing: that is our primary goal. After that, we are going to fund #MEAction and the local #MillionsMissing protests in a ratio of 2:1. If you value what we do, please consider donating to my fundraiser. It all goes into the same pot in the end, I've just linked you guys to my own, personal fundraising goal.

If you do decide to donate, please promote your donation and say why you donated on Facebook or Twitter, so long as you aren't keeping your donation private. That's how grassroots orgs get more notice.

I'm considering doing something special when my own personal fundraising page reaches milestones. I'm about to hit 10% of my goal. I wonder what I should do / release / write?

 

[JaimeS]

This might be a good starting point...

Clostridium Butyricum - A Game Changer?

Wow, I remember that thread.

....good times.

I've been helped by what amounts to a paleo diet, with many restrictions due to food intolerance.

I don't expect anyone is doing mycobiome sequencing on CFS patients yet.

I really want to work on this, personally. I've started looking into some mycobiome supplements (as opposed to primarily bacterial probiotics with some Saccharomyces sprinkled in).

 

[M Paine]

I'm working on this... one beer at a time. Thanks Saccharomyces!

 

[alex3619]

Sorry for the confusion on this but wouldn't it be the opposite? Meaning someone is really a 40 or 50 if they were not getting help but b/c they do have help (from a spouse, parent, caregiver, etc) then it appears that they are a 60 but they really are not? This Karnofsky scale confuses me a bit as it relates to the people in the study!

Karnofsky scores really are not useful in ME in my opinion. What I meant that if people are not getting help, and are not looking after themselves, it might be taken that they do not need help, and so rated higher. But, yes, it could happen the other way around.

On paper I might be a 60 myself, but I have many untreated medical issues, and cannot even organize sufficient care that most would consider it an acceptable minimum. I do get some care, a cleaner and shopper, and it helps, but this still leaves me with untreated medical conditions and a list of other unmet needs. So am I a 60? 50? Something else? I still think that taking into account homebound, bedbound or around the clock care status is better for evaluating us.

 

[alicec]

apparently Archea do have 16S RRNA

Yes uBiome sequences both Archea and Bacteria as part of its microbiome analysis occasionally also Eukaryota.

I don't expect anyone is doing mycobiome sequencing on CFS patients yet.

It's very early days for that. Here and here are a couple of recent, more general studies

 

[Kati]

Karnofsky scores really are not useful in ME in my opinion. What I meant that if people are not getting help, and are not looking after themselves, it might be taken that they do not need help, and so rated higher. But, yes, it could happen the other way around.

On paper I might be a 60 myself, but I have many untreated medical issues, and cannot even organize sufficient care that most would consider it an acceptable minimum. I do get some care, a cleaner and shopper, and it helps, but this still leaves me with untreated medical conditions and a list of other unmet needs. So am I a 60? 50? Something else? I still think that taking into account homebound, bedbound or around the clock care status is better for evaluating us.

i agree with you @alex3619, the Karnofsky scale is useless for ME. I have found that the term bedbound means different things for different people. Some are unable to go to the bathroom, while others do. Some are even unable to turn themselves while others sit in bed while doing hand crafts and talk on the phone.

And within housebound, some are unable to get outside their home but can read and even muster the energy to do online university courses, or water their garden. Self-care encompasses what, exactly, does that mean if you live by yourself, you can mop the floors and wash your dishes? Does that mean you manage to have a shower every now an then but leaves you crashed for the rest of the day? When you are by yourself, sometimes it can take all day to empty the dishwasher. Does that mean that your functional capacity score is greater because you can do it?

And if like me you are able to get out, mind you, using a mobility scooter, does that mean I am not housebound? Does that mean you are less sick? It is simply that I have access to a tool (the scooter) which I can roll straight into my appartment. Does that mean I am more functional because I manage to sit in my scooter and roll 2 blocks, and grab groceries, and breathe fresh air? But then I can unable too receive visitors or talk long on the phone because talking is too much of an effort.

There are nuances that are difficult to capture in any performance status scale. None of them is perfect but Karnofsky is the worse of them all for us ME patients. It is mostly used for hospitals.

I am hoping the research will help us out here in better understanding in what we are dealing with.

 

[Deltrus]

I bet this CFS state is used as a last ditch effort to get rid of viruses, and it usually works. Normally the virus replication is greatly reduced due to the reduced metabolism, the body's immune system slowly mops it up, and the CFS state ends. But being a last ditch effort, if the virus cannot be eradicated, the body just stays in that state. Perhaps we evolved to use the CFS state against different viruses and it actually hampers response to some viruses.

 

[alex3619]

I am hoping the research will help us out here in better understanding in what we are dealing with.

Yes, current scales, and I mean all of them, miss the nuances. Its why evaluations get it wrong so often, and not just for ME. SF36 tries to get around this by breaking issues down into different subscales, but I don't think even that is enough. Just the physical subscale is far too subtle to be captured by any simple linear scale.