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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CFS is a metabolic condition!

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I think that veterans with Gulf War Syndrome before leaving were probably sick of mild ME, worsened for all the harsh physical and psychological received in war, that they ate food of excellent quality, with preservatives, they were forced to make vaccines , to take drugs, they were in contact with many harmful chemicals, explosives, used drugs, had strong emotions (fear, anxiety, anger), extreme cold and heat, etc., etc .; these factors would lead the majority of people with ME to manifest MCS and then GWS .....

breakage of chromosomes could be explained (perhaps) even with viral infections or
metabolism of viral products;

Only a few of these are thought to apply specifically to Gulf War military personnel and not other conflicts.

Notably vaccines, nerve agents (and depleted uranium? Or was that a different conflict?)
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Hi everyone, and happy new year. May this be the year they figure out the nature of this beast that, for good or bad, binds us.

I could not help myself from posting to this thread and add to the conversation. In a way it feels like we are a bunch of people stuck in a dark room trying to describe what colors look like. It's already 2015, we have landed on a comet, and about to land on Pluto, and we still have no clue why we are so relentlessly sick. This is my 16th year in this hell, and still trying to learn as much as possible about it, and not willing to give up quite yet.

The lack of funding and the way this illness has been ignored make it very difficult to discern what's making us so sick. There are as many theories for ME/CFS as Ben & Jerry's has flavors of icecream. Yet we have no clear explanation, no cure, and no funding to figure it out.

I doubt radiation is the actual culprit, although I'm aware that exposure to depleted uranium was a major component of GWS. Other theories for ME/CFS claim that the origin is either metabolic, thyroid, immunological, vascular, intestinal, genetic, pathogenic, etc. At the end of the day, ME/CFS is multi-systemic, affecting just about every fiber of our beings, so it's not surprising to see so many different research paths and approaches. Yet, we are missing the key, the 'one ring to rule them all'.

For the vast majority of us, ME/CFS started suddenly, with a flu-like illness that never quite went away. The more I read, and the more I compare the research that I slowly digest (thanks, brainfog!) to my own experience, the more I'm convinced that this illness is the result of a complex and unfortunate series of events. This is how I see it:

  1. I believe there may be some genetic propensity first. Some of us may be more vulnerable than others to be affected by this illness. The studies by Dr. Huber on the HLA-DR4 gene allele could explain why some people develop chronic Lyme, and why others bounce back without a problem. Some of us may have a predisposition to have our immune system ravaged by the right trigger or pathogen.

  2. There is a trigger, and it seems to be an infection. Most people suffering from ME/CFS recall that sudden change, usually accompanied by a flu-like infection, and how nothing was ever the same after that. We don't know if this is a specific pathogen, but enteroviruses have been suspected. Same goes for EBV, HHV6, and countless other infections. Some theories speak of combinations of intracellular bacterial infections (cPN, Lyme, etc) with EBV, creating a perfect storm of immune evasion. Maybe we are talking about a novel virus that hasn't been identified yet (Dr. Lipkin is on the case, if he gets the money).

    Also popular is the idea of a hit-and-run virus: it infects you, you get the flu-like symptoms and the subsequent CFS syndrome, but then the virus goes away, which makes it devilishly difficult to identify. Others like Dr. Shoemaker have identified mycotoxins as the trigger for the syndrome, also following a "hit and run" model.

  3. There's a subsequent immune disruption that affects all systems, with concrete neurological implications. Those of us that are in the care of CFS specialists know the "markers" that doctors are looking for in our blood: elevated levels of cytokines, high TGF-b1, high EOS, decreased numbers of NHK cells, reduced NHK/natural killer cell function, extremely high IgG levels for a number of specific infections (EBV, HHV6, Parvo, others), as if our immune systems have been turned upside down, and fighting a never-ending war that can never be won. As repeated studies have proven, most recently by Dr. Montoya, this immune disruption has major neural effects, even affecting the brain of patients with a noticeable reduction of white matter.
    Then it affects other bodily systems and functions as well (vascular, intestinal problems, metabolic, etc)
(In my particular case, I can certainly put a checkmark on every single one of those. I seem to have all the markers they look for. Then add Lyme positive results to the mix. Fun times.)

I may be completely wrong, but I really think those three steps listed above constitute the closer scenario to what's happened to us. Our immune system has been kicked into a vicious circle, a battle it can't win. This is a neuro-immune disorder that's likely triggered by a specific pathogen, but it doesn't affect everyone the same (hence the potential genetic predisposition for some of us). As many have pointed out, MS may be the closest thing to ME in more ways than one.

It's important that science focuses on identifying the conditions and triggers to the illness (pathogens, biotoxins, genetic types that could make some people more vulnerable, like HLA-DR4), and how to reverse the immune disruption, how to put the genie back in the bottle, which may be the most difficult part yet. Specially without funds for research or even the recognition of the medical community.

Just my two cents.
 
Last edited:

Aidan Walsh

Senior Member
Messages
371
Hi everyone, and happy new year. May this be the year they figure out the nature of this beast that, for good or bad, binds us.

I could not help myself from posting to this thread and add to the conversation. In a way it feels like we are a bunch of people stuck in a dark room trying to describe what colors look like. It's already 2015, we have landed on a comet, and about to land on Pluto, and we still have no clue why we are so relentlessly sick. This is my 16th year in this hell, and still trying to learn as much as possible about it, and not willing to give up quite yet.

The lack of funding and the way this illness has been ignored make it very difficult to discern what's making us so sick. There are as many theories for ME/CFS as Ben & Jerry's has flavors of icecream. Yet we have no clear explanation, no cure, and no funding to figure it out.

I doubt radiation is the actual culprit, although I'm aware that exposure to depleted uranium was a major component of GWS. Other theories for ME/CFS claim that the origin is either metabolic, thyroid, immunological, vascular, intestinal, genetic, pathogenic, etc. At the end of the day, ME/CFS is multi-systemic, affecting just about every fiber of our beings, so it's not surprising to see so many different research paths and approaches. Yet, we are missing the key, the 'one ring to rule them all'.

For the vast majority of us, ME/CFS started suddenly, with a flu-like illness that never quite went away. The more I read, and the more I compare the research that I slowly digest (thanks, brainfog!) to my own experience, the more I'm convinced that this illness is the result of a complex and unfortunate series of events. This is how I see it:

  1. I believe there may be some genetic propensity first. Some of us may be more vulnerable than others to be affected by this illness. The studies by Dr. Huber on the HLA-DR4 gene allele could explain why some people develop chronic Lyme, and why others bounce back without a problem. Some of us may have a predisposition to have our immune system ravaged by the right trigger or pathogen.

  2. There is a trigger, and it seems to be an infection. Most people suffering from ME/CFS recall that sudden change, usually accompanied by a flu-like infection, and how nothing was ever the same after that. We don't know if this is a specific pathogen, but enteroviruses have been suspected. Same goes for EBV, HHV6, and countless other infections. Some theories speak of combinations of intracellular bacterial infections (cPN, Lyme, etc) with EBV, creating a perfect storm of immune evasion. Maybe we are talking about a novel virus that hasn't been identified yet (Dr. Lipkin is on the case, if he gets the money).

    Also popular is the idea of a hit-and-run virus: it infects you, you get the flu-like symptoms and the subsequent CFS syndrome, but then the virus goes away, which makes it devilishly difficult to identify. Others like Dr. Shoemaker have identified mycotoxins as the trigger for the syndrome, also following a "hit and run" model.

  3. There's a subsequent immune disruption that affects all systems, with concrete neurological implications. Those of us that are in the care of CFS specialists know the "markers" that doctors are looking for in our blood: elevated levels of cytokines, high TGF-b1, high EOS, decreased numbers of NHK cells, reduced NHK/natural killer cell function, extremely high IgG levels for a number of specific infections (EBV, HHV6, Parvo, others), as if our immune systems have been turned upside down, and fighting a never-ending war that can never be won. As repeated studies have proven, most recently by Dr. Montoya, this immune disruption has major neural effects, even affecting the brain of patients with a noticeable reduction of white matter.
    Then it affects other bodily systems and functions as well (vascular, intestinal problems, metabolic, etc)
(In my particular case, I can certainly put a checkmark on every single one of those. I seem to have all the markers they look for. Then add Lyme positive results to the mix. Fun times.)

I may be completely wrong, but I really think those three steps listed above constitute the closer scenario to what's happened to us. Our immune system has been kicked into a vicious circle, a battle it can't win. This is a neuro-immune disorder that's likely triggered by a specific pathogen, but it doesn't affect everyone the same (hence the potential genetic predisposition for some of us). As many have pointed out, MS may be the closest thing to ME in more ways than one.

It's important that science focuses on identifying the conditions and triggers to the illness (pathogens, biotoxins, genetic types that could make some people more vulnerable, like HLA-DR4), and how to reverse the immune disruption, how to put the genie back in the bottle, which may be the most difficult part yet. Specially without funds for research or even the recognition of the medical community.

Just my two cents.
 

Aidan Walsh

Senior Member
Messages
371
Very soon the truth will be told about this cover-up & it is 99.9% radiation injuries that has already been proven in a number of CFIDS patients 'all were positives to radiation isotopes with damaged cromosones/translocation' now the top Radiation team is going full blast on getting their work completed & published it will be coming out of Hamilton Ontario McMaster University one thing is certain it is not Lyme nor an infectious cause it will prove to be radiation injuries & yes we will be compensated through the Courts for damages then this illness will be given the urgent funding judgements it deserves...The truth will be told plus it explains the thyroid issues involved radiation attacks the thyroid...Our symptoms are no different to Chernobyl victims plus now Japan, make no mistake about this we will see more epidemics millions are going to get so called CFIDS
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
For the vast majority of us, ME/CFS started suddenly, with a flu-like illness that never quite went away.

Happy New Year, and thanks for listing your thoughts.

Just want to question the sudden onset bit - I don't think that the proportion with this is as high as you think.

This poll shows about a third of us with gradual onset. This was the case for me, and I don't recall any obvious infectious trigger.
 

Aidan Walsh

Senior Member
Messages
371
I had sudden onset they assumed febrile illness no infection was ever identified I have also shown high antibodies to numerous infections just antibodies IGM but remain IGG negative to all tests including Lyme,ebv etc etc a Phyciatrist in USA says he believes HHV-6 is a cause he has been using antivirals but don't know if he cured anyone plus other team from there also say HSV-1 is a cause but I do not hear people running Triathlons the only success I have seen is in one patient who used llong term I.V. antibiotics with CFS diagnosis then given Lyme antibiotics but I question that result it could have been any type of bacterial gut infection or other the antibiotics worked on even Myamotoi but have heard others taking long term antibiotics did nothing but made people sicker I am hearing some success with T3 thyroid using natural pigs thyroid dessicated natural forms not synthetic ones here on www.stopthemadness.com even Dr Mark Hyman claims to have success with natural thyroid medicines with other vitamins/minerals/diets plus gluten-free some research now points to gut infections plus possible SIBO types but still not hearing thousands being healed it still could be radiation hopefully soon we will know if it is or not I pray it is not :) Be well soon everyone :)
 
Last edited:

Elph68

Senior Member
Messages
598
Hi everyone, and happy new year. May this be the year they figure out the nature of this beast that, for good or bad, binds us.

I could not help myself from posting to this thread and add to the conversation. In a way it feels like we are a bunch of people stuck in a dark room trying to describe what colors look like. It's already 2015, we have landed on a comet, and about to land on Pluto, and we still have no clue why we are so relentlessly sick. This is my 16th year in this hell, and still trying to learn as much as possible about it, and not willing to give up quite yet.

The lack of funding and the way this illness has been ignored make it very difficult to discern what's making us so sick. There are as many theories for ME/CFS as Ben & Jerry's has flavors of icecream. Yet we have no clear explanation, no cure, and no funding to figure it out.

I doubt radiation is the actual culprit, although I'm aware that exposure to depleted uranium was a major component of GWS. Other theories for ME/CFS claim that the origin is either metabolic, thyroid, immunological, vascular, intestinal, genetic, pathogenic, etc. At the end of the day, ME/CFS is multi-systemic, affecting just about every fiber of our beings, so it's not surprising to see so many different research paths and approaches. Yet, we are missing the key, the 'one ring to rule them all'.

For the vast majority of us, ME/CFS started suddenly, with a flu-like illness that never quite went away. The more I read, and the more I compare the research that I slowly digest (thanks, brainfog!) to my own experience, the more I'm convinced that this illness is the result of a complex and unfortunate series of events. This is how I see it:

  1. I believe there may be some genetic propensity first. Some of us may be more vulnerable than others to be affected by this illness. The studies by Dr. Huber on the HLA-DR4 gene allele could explain why some people develop chronic Lyme, and why others bounce back without a problem. Some of us may have a predisposition to have our immune system ravaged by the right trigger or pathogen.

  2. There is a trigger, and it seems to be an infection. Most people suffering from ME/CFS recall that sudden change, usually accompanied by a flu-like infection, and how nothing was ever the same after that. We don't know if this is a specific pathogen, but enteroviruses have been suspected. Same goes for EBV, HHV6, and countless other infections. Some theories speak of combinations of intracellular bacterial infections (cPN, Lyme, etc) with EBV, creating a perfect storm of immune evasion. Maybe we are talking about a novel virus that hasn't been identified yet (Dr. Lipkin is on the case, if he gets the money).

    Also popular is the idea of a hit-and-run virus: it infects you, you get the flu-like symptoms and the subsequent CFS syndrome, but then the virus goes away, which makes it devilishly difficult to identify. Others like Dr. Shoemaker have identified mycotoxins as the trigger for the syndrome, also following a "hit and run" model.

  3. There's a subsequent immune disruption that affects all systems, with concrete neurological implications. Those of us that are in the care of CFS specialists know the "markers" that doctors are looking for in our blood: elevated levels of cytokines, high TGF-b1, high EOS, decreased numbers of NHK cells, reduced NHK/natural killer cell function, extremely high IgG levels for a number of specific infections (EBV, HHV6, Parvo, others), as if our immune systems have been turned upside down, and fighting a never-ending war that can never be won. As repeated studies have proven, most recently by Dr. Montoya, this immune disruption has major neural effects, even affecting the brain of patients with a noticeable reduction of white matter.
    Then it affects other bodily systems and functions as well (vascular, intestinal problems, metabolic, etc)
(In my particular case, I can certainly put a checkmark on every single one of those. I seem to have all the markers they look for. Then add Lyme positive results to the mix. Fun times.)

I may be completely wrong, but I really think those three steps listed above constitute the closer scenario to what's happened to us. Our immune system has been kicked into a vicious circle, a battle it can't win. This is a neuro-immune disorder that's likely triggered by a specific pathogen, but it doesn't affect everyone the same (hence the potential genetic predisposition for some of us). As many have pointed out, MS may be the closest thing to ME in more ways than one.

It's important that science focuses on identifying the conditions and triggers to the illness (pathogens, biotoxins, genetic types that could make some people more vulnerable, like HLA-DR4), and how to reverse the immune disruption, how to put the genie back in the bottle, which may be the most difficult part yet. Specially without funds for research or even the recognition of the medical community.

Just my two cents.
Hi Aidan,

I am not a conspiracy theorist but I am a research social scientist, I believe that the basic reason there is no funding for research is that there is no money in it for drug companies to find a cure. I will put on the table that they have already concluded that this is likely to be a bacterial problem and therefore needs the right treatment protocol to fix ... not new drugs. In fact, for many drug companies that provide various potions used to treat symptoms, it is in their worst interest for a cure to be found, as their potion would no longer be needed ....

The medical profession in most part believes that we are a bunch of loonies and need to sit around a campfire singing kumbaya in order to deal with our psychological issues which is causing all our problems ......

Personally, I believe that we are on the tip of an iceberg and there is going to be a pandemic of disease associated with these bacterial problems .... A healthcare crippling pandemic .... A national healthcare budget destroying pandemic ......

It is going to cost us more than 2 cents ....
 

Aidan Walsh

Senior Member
Messages
371
Hi Aidan,

I am not a conspiracy theorist but I am a research social scientist, I believe that the basic reason there is no funding for research is that there is no money in it for drug companies to find a cure. I will put on the table that they have already concluded that this is likely to be a bacterial problem and therefore needs the right treatment protocol to fix ... not new drugs. In fact, for many drug companies that provide various potions used to treat symptoms, it is in their worst interest for a cure to be found, as their potion would no longer be needed ....

The medical profession in most part believes that we are a bunch of loonies and need to sit around a campfire singing kumbaya in order to deal with our psychological issues which is causing all our problems ......

Personally, I believe that we are on the tip of an iceberg and there is going to be a pandemic of disease associated with these bacterial problems .... A healthcare crippling pandemic .... A national healthcare budget destroying pandemic ......

It is going to cost us more than 2 cents ....
Sorry you are ill but strong strong evidence is now pointing towards radiation injuries & these Governments have known this for the longest times now I do not think it has anything to do with bacteria viruses or any infectious agents it could also explain why they refuse to fund this illness 'cause they want to hide the truth we will see soon if radiation is the cause it will be out soon that's 100% the best on the globe are now working on this & they are convinced this is the cause to me it makes the most sense aside from Vitamin D3 is it possible it does something to radiation I guess time will tell if people recover on it or not :) Anything is possible but sorry I do not trust NIH/CDC to do anything they never have nor will they fund serious Science but that's ok we will fund from the Private side for the real truth 'replicated truth' not b.s. lies...
 

unto

Senior Member
Messages
171
is very rare that patients have the opportunity to direct research on the cause of a disease, that I believe we ME sufferers have this possibility; unfortunately most of us do not have the courage to say anything you know; is content to survive and is swept by an almost steady current ......

I agree with Elph68, although I think it is more likely an unknown virus
the cause of ME,

Aidan,
if they were really radiation to cause ME I think that would emerge in the dozens of epidemics;
however there should be an exaggerated incidence of the disease in those places where these "radiation" are more ... but this has never emerged.

Mesci,
maybe probably your beginning was light, so you have not given weight to a sore throat in the most .... why do not remember.
night
 

Aidan Walsh

Senior Member
Messages
371
is very rare that patients have the opportunity to direct research on the cause of a disease, that I believe we ME sufferers have this possibility; unfortunately most of us do not have the courage to say anything you know; is content to survive and is swept by an almost steady current ......

I agree with Elph68, although I think it is more likely an unknown virus
the cause of ME,

Aidan,
if they were really radiation to cause ME I think that would emerge in the dozens of epidemics;
however there should be an exaggerated incidence of the disease in those places where these "radiation" are more ... but this has never emerged.

Mesci,
maybe probably your beginning was light, so you have not given weight to a sore throat in the most .... why do not remember.
night
We'll see if they are right one thing is very clear a person should not have this radiation but unfortunately all of the cohort are positives this same cohort were also positives with Dr. Henry Heng as well plus the severity of cromosone damage was far greater than Gulf War Ilness...Time will tell soon once work completed/published
 

wastwater

Senior Member
Messages
1,270
Location
uk
Could the title be expanded a bit to cfs is a metabolic and neuroendocrine disorder.
I think it may involve cAMP.This cAMP pathway has an effect on neurotransmitters and hormones I think,and energy recycling
and metabolic disorders are also said to be common in Autism
 
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Aidan Walsh

Senior Member
Messages
371
The truth will soon come out of McMaster University plus also from Dublin, Ireland on Radiation Sickness afterall we Irish want the truth that the British phycobabblers are trying to squash but get this I will teach everyone of you how to

sue all of them babblers from the Private sides of Laws no Courts no Judges we will be putting Liens on even their Homes including any moveables...Mark my words now it is the key to Ehlers

Danlos Syndrome 100% *Uniform Commercial Codes not Admiralty b.s. Merchant Sea Laws...The Pirates are going to fall their credit plus any stocks will crash...