Interesting news on Gulf War Syndrome and ME/CFS

[DonPepe]

Griffith University researchers believe cellular door dysfunction is the cause of long-misunderstood Gulf War Illness​

By Janelle Miles and Emma Pollard
Posted 12h ago12 hours ago
WATCH
Duration: 4 minutes 9 seconds4m 9s

Griffith University researchers believe they may have found the cause of Gulf War Illness.

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In short:​

Up to a third of veterans who served in the Gulf War are estimated to suffer from the illness, which has never been specifically recognised in Australia.
Researchers at Griffith University say dysfunctional "cell doors" could be the cause.

What's next?​

The researchers say the findings may open up the possibility of treatments, similar to the trial of drugs to treat long COVID-19.
In a world first, Australian researchers have identified a significant defect in the cells of Gulf War participants they believe explains an array of mystery health issues that have plagued many of the veterans for decades.
The discovery, by Griffith University scientists, has given hope to the veterans that their often-debilitating symptoms will finally be recognised as Gulf War Illness by the medical profession and the Australian government.
It may also have international ramifications, with almost a million people serving in the US-led coalition of countries against Iraq in 1990-91, including more than 1,800 Australians.
Up to a third are estimated to suffer Gulf War Illness.

Australian Gulf War Veterans' Association president Ian Allwood, a NSW police sergeant, says the research has opened up the possibility of a treatment, more than three decades after the Persian Gulf battle.
Mr Allwood, who is Newcastle-based, was only 19 when he served in the Gulf War on HMAS Darwin as an upper deck lookout, manning 50-calibre machine guns.
"I remember during the smoke oil and dust fires, at 10 o'clock in the morning, as being in absolute darkness," he recalled.
"My eyes were watering. For years, I coughed up a mucous that tasted like smoke, oil, and dust.
"The yucky burning oil taste still comes out of my lungs if I get a knock in the chest. It's still there."

Mr Allwood, who took part in the Gulf War Illness study, said he gets goosebumps when he thinks about how it may help improve veterans' lives after years of their symptoms being doubted by doctors.
"There's nothing worse than going to a doctor and you have a symptom, or multi-symptoms, and they don't know what's wrong with you.
"Ultimately, it comes back to 'well, perhaps you're imagining those symptoms'. From a veteran's point of view, the effect of having someone say to you that they don't believe you, is very detrimental.
"To be believed, means the world."

 

[DonPepe]

Dysfunction in 'cell doors'​

In a laboratory on the Gold Coast, the Griffith University study's lead researcher Sonya Marshall-Gradisnik and her team have identified faulty cell function in veterans which she suspects is caused by their exposure to hazardous biological and chemical agents during their Gulf War service.

They compared the natural killer cells, a type of immune cell, in six Gulf War veterans with six healthy participants of similar age and gender in a pilot study recently published in the scientific journal, PLOS ONE.

The team has since replicated their findings in another 10 veterans.

Professor Marshall-Gradisnik, director of Griffith University's National Centre for Neuroimmunology and Emerging Diseases (NCNED), said they found crucial dysfunction in specific ion channels on the veterans' cells — or cellular doors that in healthy people, allow calcium to enter.

The immunologist said the doors are faulty in veterans, meaning calcium is unable to get into their cells at normal levels — explaining key symptoms of Gulf War Illness, such as fatigue, headaches, rashes, memory problems, joint and muscle pain, poor sleep, respiratory and gut issues.

"If we take, for example, brain function, where these doors are located are in specific areas of the brain that control cognition, memory, sleep, wake cycle," Professor Marshall-Gradisnik said.

"We find in Gulf War Illness veterans they have cognitive disturbances, cognitive difficulties, as well as other difficulties in the gastrointestinal tract and cardiovascular system where these faulty doors may be located on those cells as well."

Professor Marshall-Gradisnik said the Australian scientists are the first to identify ion channel impairment as a potential explanation for Gulf War Illness.

She said the scientists have found the same "faulty doors" in patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The specific ion channels, or faulty doors, are also known as threat receptors.

Exposure to 'threats' can add up​

In the case of Gulf War veterans, the Griffith University scientists believe they have become overwhelmed, and damaged, by being exposed to so many threats during their Persian Gulf service, including insecticides, depleted uranium, and smoke from hundreds of oil-well fires.

Mr Allwood said the veterans were also given mandatory medicines to protect against feared nerve gas attacks and deadly diseases, such as anthrax and the black plague.

"I do remember being quite unwell," he said.

Professor Marshall-Gradisnik suspected an individual's genetic makeup, plus environmental exposures have combined to trigger Gulf War Illness.

"If you think of it like a seesaw, you can load up a seesaw on one end a lot and in the end, it can flip and be out of balance," she said.

"It's the load and the exposure of all of these threats and how they all come to converge on that individual that may then be the turning point.
"There's potentially a real algorithm, if I can use that, to how people may have developed it versus those that did not develop it."

Hopes study will lead to greater recognition​

Australia's Gulf War veteran community hopes the research will trigger recognition of Gulf War Illness here, including within the Repatriation Medical Authority (RMA), an independent statutory body made up of a panel of medical and scientific experts.

The RMA, which is responsible to the Minister for Veterans' Affairs, fails to recognise the illness, saying there is insufficient evidence to designate a disease specific to the Gulf War.

Instead, the authority has accepted there is a "grouping of medically unexplained symptoms experienced by veterans of various deployments, as well as people in various civilian settings, and that these symptoms may cause significant distress and disability".

To establish a causal link between a medical condition and military service, the Department of Veterans' Affairs (DVA) is required to refer to determinations made by the RMA.

"Veterans and their representative organisations are entitled to request that the RMA review new evidence," the department states.

"We encourage them to bring any new evidence to the RMA's attention."
The RMA's expert members will evaluate the Griffith study at its next meeting in August.

WATCH
Duration: 15 seconds15s

Cells through the body are impacted by Gulf War Illness, affecting how much calcium the body can process.

 

[DonPepe]

The hormone Pregenolone may help some people with CFS. There are reports of positive effects, although the hormone is almost never mentioned in relation to possibly helping CFS. It may be worth a try but small doses and slow titration is advisable.

 

[Mary]

I find this very interesting. I have long wondered why people with ME/CFS (including me) often need such high doses of nutrients for them to be effective, and, further, why nutritional deficiencies never seem to get remedied as they will do in "normal" people. e.g., one of my sisters who had been vegetarian for many years developed neurological symptoms (tingling, numbness etc.) She didn't have money to see a neurologist or get proper testing. I told her to try B12 and within a week her symptoms had cleared up. And she no longer needed the high doses of B12, though I told her I thought she should keep taking it, at least for awhile.

Several nutrients have helped me with energy - B1, B6, methylfolate, methylcobalamin - but I have to keep taking them, and in higher doses than most "normal" people. I never reach a point where I don't need them. I have to take extra potassium and phosphorous every day too, etc. I didn't have to do this pre-ME/CFS.

I've theorized that something is interfering with nutrient absorption and metabolism and that's why such high doses are needed, every day.

@DonPepe - I know the Perrin Technique did not help you and was very expensive to boot. However, it seems to me that the theory behind the Perrin Technique may mesh with this research:

https://theperrintechnique.com/

The Perrin Technique™ is an osteopathic approach that manually stimulates the fluid motion around the brain and spinal cord. Manipulation of the spine further aids drainage of these toxins out of the cerebrospinal fluid. Massage of the soft tissues in the head, neck, back and chest direct all the toxins out of the lymphatic system and into the blood, where they are eventually detoxified in the liver. Eventually with no poisons affecting the brain, the sympathetic nervous system begins to function correctly, and providing the patients do not overstrain themselves their symptoms should gradually improve and in time some patients become totally symptom free.

And the PT is not like Swedish massage or similar techniques. Actually it's supposed to be done very lightly, it's not relaxing like a nice full body massage, from what I read. And can lead to people feeling sick because of toxins being released.

I plan to try it in August, if I can get the therapist to do it - and apparently Medicare will pay for it. My osteopath referred me for treatment, with a diagnosis of lymphadema. He was willing to read about it and could actually do the treatment but Medicare won't pay for weekly doctor visits for this, hence the therapist.

If I had to pay out of pocket, I wouldn't do it, unless it was pretty much guaranteed to work. As it is, I'm willing to be a guinea pig!

 

[DonPepe]

I find this very interesting. I have long wondered why people with ME/CFS (including me) often need such high doses of nutrients for them to be effective, and, further, why nutritional deficiencies never seem to get remedied as they will do in "normal" people. e.g., one of my sisters who had been vegetarian for many years developed neurological symptoms (tingling, numbness etc.) She didn't have money to see a neurologist or get proper testing. I told her to try B12 and within a week her symptoms had cleared up. And she no longer needed the high doses of B12, though I told her I thought she should keep taking it, at least for awhile.

Several nutrients have helped me with energy - B1, B6, methylfolate, methylcobalamin - but I have to keep taking them, and in higher doses than most "normal" people. I never reach a point where I don't need them. I have to take extra potassium and phosphorous every day too, etc. I didn't have to do this pre-ME/CFS.

I've theorized that something is interfering with nutrient absorption and metabolism and that's why such high doses are needed, every day.

@DonPepe - I know the Perrin Technique did not help you and was very expensive to boot. However, it seems to me that the theory behind the Perrin Technique may mesh with this research:

https://theperrintechnique.com/



And the PT is not like Swedish massage or similar techniques. Actually it's supposed to be done very lightly, it's not relaxing like a nice full body massage, from what I read. And can lead to people feeling sick because of toxins being released.

I plan to try it in August, if I can get the therapist to do it - and apparently Medicare will pay for it. My osteopath referred me for treatment, with a diagnosis of lymphadema. He was willing to read about it and could actually do the treatment but Medicare won't pay for weekly doctor visits for this, hence the therapist.

If I had to pay out of pocket, I wouldn't do it, unless it was pretty much guaranteed to work. As it is, I'm willing to be a guinea pig!

That’s not research it’s a theory. That’s all.

 

[Mary]

That’s not research it’s a theory. That’s all.

You’re absolutely right!

 

[lenora]

However, remember that you can help "prove" these matters by being a patient yourself. We have to if we ever expect to be taken seriously.

Yes, there are many, many theories floating around out there. However, doctors really have nothing concrete to work with until trials are done.

I had a sister with Stiff Person Syndrome (the same as Celine Dion). Unfortunately she also had other serious problems. It takes ALL of the doctors in a study to agree upon the disease. Out of 25, one of her doctors felt she didn't have it. A big loss for all of us.....but we have to keep going, doing and learning.

I find that as I get older (and my few friends left are the same) we think more, more and more about the younger people. Mind you, I was always that way....trying this medication and trying to get the right dose, things of that nature. Ask......you may be surprised. Hearing "No" isn't the end of the world. Give life some meaning....or at least trying to. Yours, Lenora

 

[Viala]

It's all theories until it's confirmed in practice. We have a slightly upper hand here because we can test a lot of things and see for ourselves if we feel better without waiting for anyone to test it first. We can learn from it and then adjust. That's practical knowledge which is unfortunately often disregarded as anecdotal, yet this knowledge is what works in reality.

Meanwhile a scientist usually has one or two sound theories in his life, which takes years to formulate, publish, test and prove and they still can be wrong. The only thing that matters is if it helps and leads to a recovery.

 

[Dysfunkion]

I find this very interesting. I have long wondered why people with ME/CFS (including me) often need such high doses of nutrients for them to be effective, and, further, why nutritional deficiencies never seem to get remedied as they will do in "normal" people. e.g., one of my sisters who had been vegetarian for many years developed neurological symptoms (tingling, numbness etc.) She didn't have money to see a neurologist or get proper testing. I told her to try B12 and within a week her symptoms had cleared up. And she no longer needed the high doses of B12, though I told her I thought she should keep taking it, at least for awhile.

Several nutrients have helped me with energy - B1, B6, methylfolate, methylcobalamin - but I have to keep taking them, and in higher doses than most "normal" people. I never reach a point where I don't need them. I have to take extra potassium and phosphorous every day too, etc. I didn't have to do this pre-ME/CFS.

I've theorized that something is interfering with nutrient absorption and metabolism and that's why such high doses are needed, every day.

Something definitely is in my case, it's as if my body doesn't really use much from the food I eat, in order to get any of the nutritional benefits of food I need to eat an abnormally large amount of it and gaining anything but bloat is very difficult for me. I need high amounts of methyl-b12 daily or my body just shuts down. Methyl-folate I think was helpful at one point but I think I got into some trouble with that before. The others I had mixed, weird reactions to. Potassium also seems to help me a lot but I can't supplement it because of my digestive reactions to it. My whole life I also had to do the whole "load up on nutrients/food" thing to keep my energy up. I'd eat a lot at once and then not much for a while since food immediately after consuming ironically would give me less energy, often times weird immune problems, and more cognitive problems. This also lead to a lifetime of eating disorders which didn't do me well either but were the lesser of evils in what options I had with the way my strange body worked.

---

On the cell gate theory, I've actually been thinking about this lately. Not really in the overall context of ME/CFS but my PFS (which played into my overall condition in the past year anyways, saw palmetto victim). I know my posts sound like a broken record sometimes on this topic but it seems vitamin D3 is the master modulator of my symptoms, it's based on my experimentation with it almost like a wild card. Whenever I use it I have no idea what is going to happen. I had a topical dose today and in a week or so I'll report on that and how the next days went for me. The last time I did this topically on the bounce back something turned back on and I feel like if all goes well it finally pulled me out of PFS.

What happened here though? In my case D3 is essentially the cross section between a hormonal and immune modulator. The vitamin D receptor is primarily controlling something that upon being altered can completely change the way my body is functioning in my case specifically. After I got dug out on the D3 bounce back I tried biotin which didn't go quite as well and for some reason gave me days of PEM hell but didn't drag me back into PFS hell. In fact on the bounce back from that I was actually even better as of today. I think there is something going on with the calcium channels as one of the major culprits in this condition in general. It appears to be tightly controlled by many immune, hormonal, and neurotransmitter signalling mechanisms. What we get improvements from doesn't seem to have any consistency besides trends in immune modulators and antibiotics/virals doing something to at least modify symptom patterns. The "weird reaction to B family vitamins" also pops up very frequently. The overarching theme is "my brain feels like it's misfiring and I have a million horrible life ruining physical problems that are somehow connected". I'm actually starting to think it's an ion gated channel problem caused by other dysfunction around the whole human body electrical system but it can't be fixed unless the problems around it altering the voltage channels are corrected. When these channel feedback loops get messed up as a result you get CFS.

 

[DonPepe]

Something definitely is in my case, it's as if my body doesn't really use much from the food I eat, in order to get any of the nutritional benefits of food I need to eat an abnormally large amount of it and gaining anything but bloat is very difficult for me. I need high amounts of methyl-b12 daily or my body just shuts down. Methyl-folate I think was helpful at one point but I think I got into some trouble with that before. The others I had mixed, weird reactions to. Potassium also seems to help me a lot but I can't supplement it because of my digestive reactions to it. My whole life I also had to do the whole "load up on nutrients/food" thing to keep my energy up. I'd eat a lot at once and then not much for a while since food immediately after consuming ironically would give me less energy, often times weird immune problems, and more cognitive problems. This also lead to a lifetime of eating disorders which didn't do me well either but were the lesser of evils in what options I had with the way my strange body worked.

---

On the cell gate theory, I've actually been thinking about this lately. Not really in the overall context of ME/CFS but my PFS (which played into my overall condition in the past year anyways, saw palmetto victim). I know my posts sound like a broken record sometimes on this topic but it seems vitamin D3 is the master modulator of my symptoms, it's based on my experimentation with it almost like a wild card. Whenever I use it I have no idea what is going to happen. I had a topical dose today and in a week or so I'll report on that and how the next days went for me. The last time I did this topically on the bounce back something turned back on and I feel like if all goes well it finally pulled me out of PFS.

What happened here though? In my case D3 is essentially the cross section between a hormonal and immune modulator. The vitamin D receptor is primarily controlling something that upon being altered can completely change the way my body is functioning in my case specifically. After I got dug out on the D3 bounce back I tried biotin which didn't go quite as well and for some reason gave me days of PEM hell but didn't drag me back into PFS hell. In fact on the bounce back from that I was actually even better as of today. I think there is something going on with the calcium channels as one of the major culprits in this condition in general. It appears to be tightly controlled by many immune, hormonal, and neurotransmitter signalling mechanisms. What we get improvements from doesn't seem to have any consistency besides trends in immune modulators and antibiotics/virals doing something to at least modify symptom patterns. The "weird reaction to B family vitamins" also pops up very frequently. The overarching theme is "my brain feels like it's misfiring and I have a million horrible life ruining physical problems that are somehow connected". I'm actually starting to think it's an ion gated channel problem caused by other dysfunction around the whole human body electrical system but it can't be fixed unless the problems around it altering the voltage channels are corrected. When these channel feedback loops get messed up as a result you get CFS.

Have you tried pregnenolone? There are a couple of anecdotal reports on improvement of symptoms in Reddit? It could be worth a crack.

 

[Mary]

Have you tried pregnenolone? There are a couple of anecdotal reports on improvement of symptoms in Reddit? It could be worth a crack.

My doctor had me start taking pregnenolone over 20 years ago and I've pretty much taken it ever since. I don't know how I would feel without it.

Back in the early-mid 1990's (pre-crashing/PEM which started in 1998), my adrenals were in trouble and I was weak as a kitten. My chiropractor who did muscle testing gave me an adrenal glandular which helped with my energy a lot. If I get put under severe stress, I need to take the glandular again, but in general I don't need it. It's possible the pregnenolone has been helping support my adrenals all this time. It's cheap so I keep taking it.

btw, I did see my MD for the fatigue (back when I thought doctors could help me) and he gave me Prozac (!) I hated it and stopped it after 2 days.

 

[DonPepe]

Interesting Mary

Is an adrenal glandular a specific test?

 

[Mary]

Interesting Mary

Is an adrenal glandular a specific test?

Actually it's a product - an adrenal grandular supplement. It has bovine adrenal gland in the supplement as well as several other ingredients. The first one I took was Drenatrophin PMG by Standard Process. You probably know that Standard Process has a really good (and deserved) reputation for quality products. I've also taken Drenamin by the same company, and there are a few other good products I've used - one by Biotics Research, I forget the others.

My chiropractor used muscle testing to determine (1) that my adrenals needed support, (2) that the adrenal glandular supplement was good for me and (3) how much to take. I initially had to take quite a high dose but within 2 - 3 days I felt my energy returning. It felt like a miracle. Unfortunately muscle testing hasn't been able to do anything for crashing/PEM but it has helped me on many occasions when doctors were helpless.

Often people like to argue about muscle testing, "it's not scientific" etc. - all I know is it has helped me a lot, and again, generally after the doctors were unable to do anything or just wanted to throw a drug at me with no good reason. So I won't argue about muscle testing, if someone does want to argue

btw, here's a tip - when you reply to someone, it's good to either hit the "reply" button, or highlight a portion of their post you're replying to and then hit that reply button, OR just tag them by putting the "@" sign in front of their user name like this: @DonPepe and that way they'll get an alert that you are responding to them

 

[Tammy]

Mr Allwood said the veterans were also given mandatory medicines to protect against feared nerve gas attacks and deadly diseases, such as anthrax and the black plague.

I had a neighbor who was in the gulf war. He mentioned that he never was the same after the meds they gave him to supposedly protect against anthrax.

 

[Viala]

The gulf war was their opportunity to experiment on soldiers, sadly. People think they're being protected while in reality they're lab rats, it's despicable. For veterans that literally risked their lives, hearing that they're imagining things must have been awful. I hope the time comes when humanity will realize that people who do all these things are evil.

What's up with doctors patronizing and treating other adults like children, it's so common that I am actually surprised it's not talked about more. Doubting symptoms and implying mental disease should also be treated as a crime.

 

[junkcrap50]

This group at Griffith's University has found Na+ cell transport dysfunction in several chronic diseases (ME/CFS, LC, lyme??, fibro??). Since it's such a basic cellular function, have they confirmed that this Na+ transport problem is exclusive to post-infectious/toxin caused syndrome like ME/CFS/LC/GWS diseases? Is it present in other chronic diseases, like MS or Alzhiemers or other rheumatological disease? It would suck majorly this wasn't unique to CFS/LC/GWS.