So... We have a new name now then?

[Dechi]

I agree no more syndrome. Even if only for insurance purposes, they consider syndromes " not a real disease "... We need to have a strong name that won't trigger infinite questioning and generate lawsuits on our parts when we're not being recognized as sick and consequently, not paid our dues !

 

[alex3619]

This is not a description of myalgic Encephalomyelitis and that's why I have a hard time understanding it.

One way to think about it is its not a description of ME as a whole, just the metabolism, and it still needs replication and further research. In time I hope they can link the cytokine and immune changes with the metabolic changes in the same patients.

 

[osisposis]

This cohort was most likely an ME cohort, its not clear how well it will translate to loosely defined CFS groups, expecially Oxford which is the worst definition of all.

PS I am still going to use ME for strictly defined diagnoses, and CFS for the rest, and ME/CFS where its in doubt.

for me I consider ME as involeing meningitis, and CFS as a less severe , maybe not even disease but symptoms, and symptoms related to environmental exposures are just that unless in my view infections become systemic and whole body autoimmunity accurs not just one organ. I cant stop thinking about a certain "mold warrior" who claimed he was the protochild for CFS from incline village, and knowing I was a whole lot sicker than he ever was and several others on that bandwagon and the fact that none of them believed allergies had anything to do with that because I guess they didn't get to that point. ? this mold warrior claimed he cured himself by practicing avoidance of his triggers, even went so far as to claim he taught others how to cure themselves , lols well he later retracted but than I guess is still pushing he wares from what I've seen lately. gee, avoidance of your triggers comes from long ago knowledge with allergy, it's a no brainer and believe me nothing dictates more to you that you have no choise but to practice avoidance when you have anaphylaxis to mold extracts!, voc's and other chemicals.
but I'm haven't been in this group very long so my view may be more about that than how ME PRESENTS ITSELF. what I do know is that some have healed and moved on, some that didn't have the severe sinus involvement, lung involvement, IBS and sniffed and sold esstinial oils because they hadn't become horrabily reactive to voc's from their water damaged building exposures. yet up until I just resently was officially diagnosed with ME/CFS instead of CFS and FM, THE BIG DIFFERENCE BETWEEN THEM AND ME IS I DID END UP WITH SEVERE ALLERGIC DISEASE , specific IgE,IgG to molds. and I know I had meningitis witch none of them ever reported happening to them, so, ? and a symptom is just that until those symptoms become part of a on going disease. mold and it's by products are pretty hard to avoid, people with severe asthma and chronic rhinosinusitios likely wont do well climbing mountains and the whole single organ involvement vs. whole body involvement , systemic vs. not, still a lot more to it all because even autophagy dysfunction that might explain autoimmunity in the microbiome world may not happen with out a fairly high dose exposure and when it comes to the mucosa, inhalation exposures are not going to just affect the stomach, all the airway is involved, and dermal and ingestion also matters and the acquired immune system is involved just like the innate immune system is and in a bad water damaged building everything involved plays a role and those that didn't consider everything involved there to me are only looking through their own rose colored glasses, not saying the article isn't good, maybe it's more the title for me that sucks, depends on how you look at it. I guess

 

[caledonia]

Me patients suffer from chronic neuro inflammation. It seems to me that the cohorts in this study did not suffer from ongoing inflammation. The way I understand it - it's more like a hit and run scenarios where there was a n initial "hit" which might have been infectious or environmental or other stressor and then the stressor disappeared but the patients are left in this stuck hibernating state.

This is not a description of myalgic Encephalomyelitis and that's why I have a hard time understanding it.

Maybe the chronic inflammation is where the individual genomics part fits in.

The whatever stressor(s) cause the hypometabolic state, but in genetically susceptible people, it also kicks off inflammation.

 

[osisposis]

the hit and run theory has been implied with some mycotoxins, noticed Gordon medical was listed, I know at some point Shoemaker was involved with Gordon research, I've done quite a bit of research on the danger signal , innate immune system, epegentics, ect. what this article points to for me is more about chemical exposures, yes it brings up allergy but! what this article does do hopefully ,oints the and not just the gut witch is actually a continuation of the airways. now in the realm of longterm term low dose exposures or lifetime exposures ya the gut may suffer more than the lungs or sinuses, but in a high dose ihalation scenario that's not the case

 

[osisposis]

Me patients suffer from chronic neuro inflammation. It seems to me that the cohorts in this study did not suffer from ongoing inflammation. The way I understand it - it's more like a hit and run scenarios where there was a n initial "hit" which might have been infectious or environmental or other stressor and then the stressor disappeared but the patients are left in this stuck hibernating state.

This is not a description of myalgic Encephalomyelitis and that's why I have a hard time understanding it.

I actually did some research long ago on hibernation cause after my exposure I felt like that was exactly what my body was doing, started gaining weight after I started getting a fairly good grasp on avoiding my triggers, not long ago a problem with a rental apartment above mine caused a mold problem in mine and I became homeless again and exposed to the real world where I had no hope of avoiding all my triggers, I started losing weight and not eating much again. to bad it's not the other way around

 

[Research 1st]

Like Alex said, this research we're discussing is a part of it, not all of it, although it may well explain all of it in the long wrong (why multiple systems in the body fail, because it all ties back to deranged energy metabolism which without energy, organs don't work correctly, and presumably, pathogens prosper, immunity activates, inflammation flourishes and the end game is autoimmune diseases and micro-vascular injury, over time), at least in some subsets.

The other parts we have to work out are pathogens, which all fits in with the evidence of oxidative stress, neuroendocrine dysfunction, exercise VO2 max drop off, vascular issues, and finally cutting edge neuroimaging showing apparent changes in brain physiology etc.

The Mitochondrial part is (hopefully) unique to ME CFS, but then we have the inflammatory cascade and autoimmune diseases to decipher, diagnose and treat as well.

The diseases and syndromes in ME CFS will be multiple, complex and hard to treat, and this end game (our personal tragedy and that of our family and loved ones who go through hell with us) is the consequence of the people paid to look after you (Governments), handing the keys to your fragile health to religious propaganda merchants (BPS CFS theorists) who, of course, never went down the biological disease pathway ,as they don't understand complex multi systemic biological diseases or care for them, hence they qualified as MD's, and went into Psychiatry as its interesting and pays well.

If only we had been gifted that choice also. It would be nice to have choices one-day, not forced survival decisions.

 

[osisposis]

Scavenging nucleic acid debris to combat autoimmunity and infectious disease

http://www.pnas.org/content/113/35/9728.abstract

interesting.

 

[alex3619]

I think we are heading for an explanation that is more than just about energy. Energy paths might be slowed due to metabolite depletion, but many other paths may require many of those metabolites. Hence, even if we had enough energy, those paths would still be impeded.

I would love to see a name that reflects what the science is uncovering. We are still early in that discovery process though, and I am sure there will be surprises in store as the science advances.

 

[Mel9]

Nematodal Hypotmetabolic Disease (NHD).

No!

 

[taniaaust1]

Hypometabolic disease.. well I dont like it. Its just to vague a name. makes me think of another vague name we have now the CFS. I'd perfer them to know more and if they are going to change the name from ME to something else, I'd like to possibly see the cause of this in the name eg why the hypometabolism? there is something going on and its deeper this this. What's the actual fault in our bodies?

 

[Skippa]

Recurrent Hypometabolic Myalgia

Recurrent Hypometabolalgia

Recurrent Hypometaboliosis

Hmmm... I must be bored!

Still... Mathees Disease should win!

 

[TrixieStix]

in other forums people have been suggesting "Dauer Disease". but like others have said this newest research is only a piece of the larger puzzle.