Gulf War Illness - causes

I was given ciprofloxacin for a bladder infection in 2010. I developed an issue with the tendons above my heel - I was hobbling and complaining about it well before I googled for side effects of the drug. The tendon problem did eventually come right. I felt bad on the drug and for some time after. It may well have knocked my health down a level. It was at this time that I started getting a frequent sensation of warmth on the top of my left foot that I still get.

Since then, I mention ciprofloxacin when doctors ask if I have bad reactions to any drugs.

In my case, I didn't come down with ME/CFS until 2 years later, and then it was with my two children, and neither of them has ever had cipro. So, I can't point to the drug as a cause of our ME/CFS. But, without doubt, it's a dangerous drug and should not be used lightly.
The FDA view:
the FDA determined that fluoroquinolones should be reserved for use in patients with these conditions who have no alternative treatment options.
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Hutan said:
I was given ciprofloxacin for a bladder infection in 2010. I developed an issue with the tendons above my heel - I was hobbling and complaining about it well before I googled for side effects of the drug. The tendon problem did eventually come right. I felt bad on the drug and for some time after. It may well have knocked my health down a level. It was at this time that I started getting a frequent sensation of warm water on the top of my left foot that I still get. :
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Man, I was looking for extra information on how this topic is pertinent to GWS to prevent going off-topic, but there's just straight up nothing to be found but lawyers, who mostly stopped taking up lawsuits over Cipro due to futility. There's just absolutely no scientfic interest in this subject.

I'm curious though, how long did it take for your achilles tendon damages to set in? Because some people experience tendon tears after a *single* pill right the next day, and others such as me, stumble around for a few months after last adminstration without a care in a world, only to find out that three months later, a bomb suddenly went off in their bodies. And while I do have some poorly conceived ideas, there is absolutely no way whatsoever to predict a reaction like this, and honestly, I doubt there ever will be.

I developed ME/CFS a year later, and while there might not have been a direct causal relationship, I do believe that the neurotoxic, mitochondrial and endothelial damages from FQAD made me more susceptible to developing ME.
But yeah, you absolutely should be careful never to ingest another molecule of this garbage in your life. The damage is cumulative, and the fact that you just barely got away with a slap on the wrist (or the heel) the first time is highly indicative that next time, it likely wouldn't have ended well for you.
 
Suffolkres said:
So the following is very useful and interesting to listen to. https://sustainablefoodtrust.org/podcast/episode-27-with-zach-bush/ * References human exposure from air, water Soil, food etc- below
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My personal view on this is that we need to see some significant prevalence studies on “toxins”. Until then there will always be conspiracy theories of how some humans are poisoning others through ineptitude or us living in a non-utopian environment where air fresheners, herbicides, pesticides, lead in our water mobile phone masts etc etc ‘could’ be the source of a condition. These are so numerous and varied though i keep coming back to ‘why do some people get ME and others don’t’ (if the toxin was food or environmental). Perhaps the GWAS study will reveal something?

I am deeply suspicious of medical “experts” that claim that non provable environmental “toxins” are to blame for conditions..sounds like career building fluff to me...a bit like all the BMJ articles written by cardiologists about the causes of obesity.

the only way to lance the fake conspiracy and ill-informed crap from actual facts is to study it properly. Until then medical professionals should stick to provable medical facts not blame casting speculation.

having said all that, improving environmental standards has to be a good thing regardless of human health, but judicial use of pesticides etc may have to be balanced against gene editing and other methods ...you can’t grow and rear everything organically in small farmsteads (or whatever unrealistic utopian food supply-chain people think they want), there just isn’t the land space to feed everyone with that level of inefficiency. (Sorry for the mini rant at the end I’m overloaded with fake food news atm...too many idle hands with internet access.
 
My bet is on pesticides. In Scotland many people reported getting CFS after being exposed to sheep dip (anti flea / parasite agent for sheep). During the gulf war similar agents sprayed on soldiers to protect them from mosquites. Sounds like the same story to me.

In the early 2000's there were quite a few studies on the link between pesticides (organophosphates ) and ME/CFS. Seems like this lead has died down however, because they found evidence that GWI and sheep dip-induced CFS have a different aetiology than ME/CFS.

Here's one study that compared the 3 groups and found differences:

https://pubmed.ncbi.nlm.nih.gov/14503920/
 
Sarin Gas as blamed for Gulf War Illness - BBC
US scientists say they have discovered what caused thousands of soldiers who served in the 1991 Gulf War to fall sick with mysterious symptoms.

They have pinned the blame on the nerve agent sarin, which was released into the air when caches of Iraqi chemical weapons were bombed.
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Dr Haley said the key to whether somebody fell ill was a gene known as PON1, which plays an important role in breaking down toxic chemicals in the body. His team found veterans with a less effective version of the PON1 gene were more likely to become sick.

The latest study - largely funded by the US government - involved more than 1,000 randomly-selected American Gulf War veterans.

Dr Haley, of the University of Texas Southwestern Medical Center, said: "This is the most definitive study.
"We believe it will stand up to any criticism. And we hope our findings will lead to treatment that will relieve some of the symptoms."
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The National Gulf Veterans and Families Association, a charity working with British ex-soldiers who are ill, welcomed the study.
"For 30 years they have been disowned, ignored and lied to by consecutive governments, with no positive answers to their questions about exposure to toxic substances and gases and the affect it had on them both physically and mentally," it said in a statement.

"We hope the UK government takes this report on board and will respond by offering Gulf veterans access/opportunity to have the tests. This will hopefully lead to more meaningful and proper medical treatment which they have for too long been denied."
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the Royal British Legion said there had been "little meaningful research" on Gulf War Syndrome in the UK.
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I don't know whether this will hold up, but it makes sense. I wonder what Wesseley and his mates in the British defence forces think of this.
 
https://www.mayoclinicproceedings.org/article/S0025-6196(11)64983-5/fulltext
Here's Dr Robert Haley (involved in the latest publication) writing back in the year 2000:
In his recent Special Article, Sartin1 presented in detail the side holding that ill Gulf War veterans are suffering only from common symptoms exaggerated by stress and that organic brain injury from environmental causes is implausible. For the past 5 years this view has dominated research and policy positions in Washington.
In his commentary, however, Sartin1 omitted important longknown facts that have caused others of us to question this popular view and consider the possibility that 100,000 Gulf War veterans may have suffered brain injury from exposure to environmental chemical toxins, including low-level sarin nerve agent. Representative examples follow.
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A decade after the war, tens of thousands of Gulf War veterans may be suffering a characteristic set of neurologic symptoms,19and the rate of VA-acknowledged disability is 2 to 3 times higher than after any prior war.20 As physicians trying to understand this problem and serve these veterans, we must resist the human tendency to censor the facts to conform with strong popular viewpoints.
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https://www.science.org/content/article/gulf-war-illness-linked-neurotoxins
And here's a 2004 article
A panel of outside experts chosen by the Department of Veterans Affairs (VA) has concluded that there is a "probable link" between neurotoxins such as sarin gas and the mysterious ailments that struck veterans of the 1990–91 Gulf War. This conclusion--in a draft report obtained by Science and scheduled for release later this month--is at odds with other analyses of Gulf War illness, including an August report from the Institute of Medicine (IOM).
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But many scientists who study Gulf War cases are unconvinced that neurotoxins can explain Gulf War illness. "I don't know of any serious expert review that has come to these conclusions," says Simon Wessely, director of the King's Centre for Military Health Research in London. Wessely, like many researchers in the field, believes that Gulf War illness arose from a combination of the stress of war, the use of experimental vaccines, and possibly exposures to environmental hazards such as oil-well fires.
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I haven't been able to find a scientific paper to support the 2022 claims of certainty.
 
I don't want to pour cold water on this news, but it looks as though Dr Haley has been announcing that the cause of Gulf War Syndrome is known for a while now, and others have been ignoring the finding with equal determination.

e.g. USA today story 2012
WASHINGTON — Gulf War illness, the series of symptoms ranging from headaches to memory loss to chronic fatigue that plagues one of four veterans of the 1991 Persian Gulf war, is due to damage to the autonomic nervous system, a study released Monday shows.

"This is the linchpin," said the study's lead author, Robert Haley, chief of epidemiology at the University of Texas Southwestern Medical Center in Dallas.

"The disease itself is so difficult to express and to understand," Haley said, explaining that veterans described simply that they "don't feel well" or "can't function," without being able to further explain a disease that affects the automatic functions of their bodies, such as heat regulation, sleep or even their heartbeats.
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The doctors had funding from Congress until 2010, when they were dropped by the Department of Veterans Affairs after being accused of wasting millions of dollars in research money. That came directly after a 2009 study from Haley showed that neurotoxins such as anti-nerve agent pills, insect repellent and the nerve agent sarin caused neurological changes to the brain, and that the changes seem to correlate with different symptoms.
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arewenearlythereyet said:
My personal view on this is that we need to see some significant prevalence studies on “toxins”. Until then there will always be conspiracy theories of how some humans are poisoning others through ineptitude or us living in a non-utopian environment where air fresheners, herbicides, pesticides, lead in our water mobile phone masts etc etc ‘could’ be the source of a condition. These are so numerous and varied though i keep coming back to ‘why do some people get ME and others don’t’ (if the toxin was food or environmental). Perhaps the GWAS study will reveal something?

I am deeply suspicious of medical “experts” that claim that non provable environmental “toxins” are to blame for conditions..sounds like career building fluff to me...a bit like all the BMJ articles written by cardiologists about the causes of obesity.

the only way to lance the fake conspiracy and ill-informed crap from actual facts is to study it properly. Until then medical professionals should stick to provable medical facts not blame casting speculation.

having said all that, improving environmental standards has to be a good thing regardless of human health, but judicial use of pesticides etc may have to be balanced against gene editing and other methods ...you can’t grow and rear everything organically in small farmsteads (or whatever unrealistic utopian food supply-chain people think they want), there just isn’t the land space to feed everyone with that level of inefficiency. (Sorry for the mini rant at the end I’m overloaded with fake food news atm...too many idle hands with internet access.
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re,....'deeply suspicious of medical “experts” that claim that non provable environmental “toxins” are to blame for conditions..sounds like career building fluff to me...."

Please read following; Sent to HoL last year and to NICE Vice chair.......

Professor Steven Holgate was recently knighted. He was involved in this research which links agricultural pesticides to altered gene expression and ME and CFS.


https://jcp.bmj.com/content/61/6/730.full

Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis: a detailed analysis of gene networks and clinical phenotypes

CFS/ME subtype, we determined those genes whose expression differed significantly from ... nervous system, OP-modified NTE initiates neurodegeneration. ... Harrison TJ, Wilkinson RJ, Tyrrell DA, Holgate ST, Kerr JR.
Please use your influence to help us here.

'We all know that particulates are highly damaging to human Health.

The paper Perspective: Cell danger response Biology-The new science that connects environmental health with mitochondria and the rising tide of chronic illness - Robert K. Naviaux was referred to by Baroness Finlay in support for amendment 11 in September’s debate. https://www.sciencedirect.com/science/article/pii/S1567724919302922
Please follow the science (and learn from current modelling & evidence)..'


FYI
Dear Member of the House of Lords,

I watched with keen interest to the debate and was encouraged to hear fine words about amendment 11 in September.
I was also encouraged by the vote of 212 for the amendment.

I do hope Labour are not considering turning on a critical public health issue at this juncture, failing us during the pandemic which is teaching us all so much but most importantly denying every children’s right, that is, “The right to be born into a healthy environment”.

Air Pollution comes in many guises and forms.

We all know that particulates are highly damaging to human Health.The paper Perspective: Cell danger response Biology-The new science that connects environmental health with mitochondria and the rising tide of chronic illness - Robert K. Naviaux was referred to by Baroness Finlay in support for amendment 11 in September’s debate. https://www.sciencedirect.com/science/article/pii/S1567724919302922
Please follow the science (and learn from current modelling & evidence)

I have lived in a beautiful but ‘toxic’ environment impacted by agriculture for 44 years.
Despite indisputable medical and research evidence of risks and harm from pesticides in the air, resulting in development of many long term conditions, I very concerned that rural residents, like me, continue not to be afforded any protection from the spraying of agricultural pesticides on crops.

When gardens like mine are impacted next to sprayed crops, the visible damage to gardens following spraying, (see below recent damage to walnut and roses) show that residents like me, are equally impacted and therefore are effectively being treated like collateral damage.

It is understandable why this Tory Government would reject & seek to avoid this public health risk and liability but there is no excuse for Labour to fail to work in the public interest. It’s a no brainer.

Air Pollution comes in many guises and forms. We all know that particulates are highly damaging to human Health. The paper Perspective: Cell danger response Biology-The new science that connects environmental health with mitochondria and the rising tide of chronic illness - Robert K. Naviaux was referred to by Baroness Finlay in support for amendment 11 in September’s debate. https://www.sciencedirect.com/science/article/pii/S1567724919302922

I coordinate a group to support those affected by chronic ill health, especially ME and CFS and am a National Institute for Health and Care Excellence stakeholder for a national Group.
 
Hutan said:
I don't want to pour cold water on this news, but it looks as though Dr Haley has been announcing that the cause of Gulf War Syndrome is known for a while now, and others have been ignoring the finding with equal determination.

e.g. USA today story 2012
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Yes, the BBC story is quite strange, because it doesn't seem to link to a newly published paper. And no other outlet is running with this 'story'....
 
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'King's Centre for Military Health Research 15 Year Report - summary of our scientific work'

https://www.academia.edu/2386138/Ki..._Year_Report_-_summary_of_our_scientific_work


September 2010


Page 15:

“We conclude that it is difficult to see how further direct research on Gulf veterans will provide much more in the way of relevant information concerning what happened in 1991. Likewise, after 20 years we don’t expect to learn much more about the direct causes of ill health.

Much relevant information wasn’t collected, and is not going to be found now. However, researching other populations may shed some light, and animal studies will continue to provide controlled data in a way that human studies cannot.

But does that mean that we should abandon research into Gulf veterans? Not at all. There is still a need to try and understand the causes of disability and disadvantage in Gulf veterans. We have suggested looking at Gulf War illness in a similar fashion to the way we think about illnesses such as CFS, irritable bowel syndrome and other unexplained syndromes, and to think more about why veterans are either staying ill or not getting better, putting to one side the vexed question of what started the problem in the first place”


KCMHR is led by Professor Simon Wessely who is the Vice Dean, Academic Psychiatry, Teaching and Training at the IoPPN and also heads the Department of Psychological Medicine, and Professor Christopher Dandeker in the Department of War Studies is co-director.


@dave30th
 
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Haveyoutriedyoga said:
They are now talking about being believed, pain, fibromyalgia, CFS and long Covid, which was introduced as a topic by the presenter by them referring to the ("previous") dismissal of Gulf War illness and the findings about the nerve agent (Woman's hour)
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Fantastic programme and articulate Dr who said of Long Covid- all the things we know to be true about ME!


How are medical diagnoses formed? And how can they be influenced by factors like bias, the media or patient-led campaigns? We discuss with
@Jules_Montague
, author of The Imaginary Patient: How Diagnosis Gets Us Wrong: https://bbc.in/3M8eY2P

Jules Montague on diagnosis, and other topics
Woman's Hour
In former consultant neurologist Jules Montague's new book, The Imaginary Patient, she looks at how they can be influenced by many external factors. Who gets to choose which conditions are "real" or not, and is that a helpful question to ask? And what implications does that have for women? She joins Emma.
 
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Suffolkres said:
Fantastic programme and articulate Dr who said of Long Covid- all the things we know to be true about ME!


How are medical diagnoses formed? And how can they be influenced by factors like bias, the media or patient-led campaigns? We discuss with
@Jules_Montague
, author of The Imaginary Patient: How Diagnosis Gets Us Wrong: https://bbc.in/3M8eY2P

Jules Montague on diagnosis, Abortion in the US, A scratch and sniff T-shirt, Disabled children in Ukraine
Woman's Hour
In former consultant neurologist Jules Montague's new book, The Imaginary Patient, she looks at how they can be influenced by many external factors. Who gets to choose which conditions are "real" or not, and is that a helpful question to ask? And what implications does that have for women? She joins Emma.

How are disabled children being affected by the war in Ukraine? There are claims that thousands have been forgotten and abandoned in institutions unable to look after them. The human rights organisation, Disability Rights International, has carried out an investigation. Their Ukraine Office Director, Halyna Kurylo joins Emma.

It’s been just over a week since the the publication of a leaked draft document from the Supreme Court, which suggests Justices are set to overturn the landmark Roe v Wade, ruling, which gave women in American an absolute right to an abortion. To discuss what this means for women in America Emma is joined by Associate Professor Emma Long and State Senate candidate Leslie Danks Burke.

We've been celebrating the emotional power of old clothes in our series Threads. Zoe, who was known as 'strawberry girl' on her small university campus in Liverpool tells us about her 'scratch-and-sniff' t-shirt.
Click to expand...

A diagnosis - the label we give to a disease - is supposed to offer certainty: a system for classifying and treating sickness, valid across time and space, and uncomplicated by value judgements or monetary concerns. Yet, as Jules Montague knows from years of working with patients in several countries, the practice is tainted by the forces of imperialism, politics, discrimination and Big Pharma. At their worst, diagnostic labels can do active harm to patients. Drawing on meticulous research and deep personal insight, Montague delves into historical diagnoses that have become extinct, and into modern maladies - from PTSD to oppositional defiant disorder to excited delirium - and explores whether they too may prove not to be true diagnostic labels at all. Eye-opening and urgent, this book reveals the heart-breaking, thought-provoking stories of real people living and dying in the shadow of their diagnoses.
 
Suffolkres said:
Fantastic programme and articulate Dr who said of Long Covid- all the things we know to be true about ME!


How are medical diagnoses formed? And how can they be influenced by factors like bias, the media or patient-led campaigns? We discuss with
@Jules_Montague
, author of The Imaginary Patient: How Diagnosis Gets Us Wrong: https://bbc.in/3M8eY2P

Jules Montague on diagnosis, Abortion in the US, A scratch and sniff T-shirt, Disabled children in Ukraine
Woman's Hour
In former consultant neurologist Jules Montague's new book, The Imaginary Patient, she looks at how they can be influenced by many external factors. Who gets to choose which conditions are "real" or not, and is that a helpful question to ask? And what implications does that have for women? She joins Emma.

How are disabled children being affected by the war in Ukraine? There are claims that thousands have been forgotten and abandoned in institutions unable to look after them. The human rights organisation, Disability Rights International, has carried out an investigation. Their Ukraine Office Director, Halyna Kurylo joins Emma.

It’s been just over a week since the the publication of a leaked draft document from the Supreme Court, which suggests Justices are set to overturn the landmark Roe v Wade, ruling, which gave women in American an absolute right to an abortion. To discuss what this means for women in America Emma is joined by Associate Professor Emma Long and State Senate candidate Leslie Danks Burke.

We've been celebrating the emotional power of old clothes in our series Threads. Zoe, who was known as 'strawberry girl' on her small university campus in Liverpool tells us about her 'scratch-and-sniff' t-shirt.
Click to expand...


Reply tweet to me from Jules who writes i Lancet it seems.....
@Jules_Montague
Writer & Neurologist. Guardian|BBC|Lancet. Visiting Lecturer Beira, Mozambique.
 
Hutan said:
I don't want to pour cold water on this news, but it looks as though Dr Haley has been announcing that the cause of Gulf War Syndrome is known for a while now, and others have been ignoring the finding with equal determination.
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I've done a thread:


I think the reason this has been "known for a while now" is because it is damn complicated! It's very easy for minimisers to minimise - and boy will they be trying right now.

The full paper is here: https://ehp.niehs.nih.gov/doi/10.1289/EHP9009
https://ehp.niehs.nih.gov/doi/10.1289/EHP9009
From my quick deep dive today, I initially thought the same, but Haley has spent years (decades) carefully establishing the pathological pathways, toxicology and epidemiology. This paper helps lock it into place. It's an impressive piece of work.

There's a commentary here: https://ehp.niehs.nih.gov/doi/10.1289/EHP11057
 
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From Professor Robert Haley's evidence to the 2004 UK Independent Gulf War Illness Inquiry (The Lloyd Inquiry) on Tuesday 3rd August 2004. The Lloyd Inquiry site, with transcripts of all the witnesses evidence, is unfortunately no longer online.


Professor Robert Haley: …..“Studies using nonspecific definitions of Gulf War neurological syndrome are biased toward finding negative results. Early in the history of Gulf War illness research, around 1993, a decision was made in the government to the effect that “there is no Gulf War syndrome,” and this led to pressure on researchers who wanted government funding not to use a case definition of the illness in their research. Without at least a provisional case definition, however, it is virtually impossible to design studies that will elucidate the nature of the illness, or illnesses, and connect them with causes. This unfortunate government decision is arguably the main reason for the delay in progress in this research field.

Finally, when a few studies bucked the policy and used provisional case definitions successfully to make promising discoveries, research groups that had performed expensive population surveys without a case definition in mind attempted either to prove that no case definition was possible or to concoct case definitions after the fact from data collected earlier, even when the collected data were insufficient for defining a case definition.


The most important example of the unproductive use of a nonspecific case definition concocted after the fact was the series of studies from the Kings College London group. In place of a case definition describing the disease that veterans were complaining of, they defined Gulf War illness as having a score of greater than 72.2 on the SF-36 questionnaire, which measures functional impairment regardless of the cause. This case definition essentially counted veterans as having Gulf War illness if they had any condition that caused them to feel bad. Consequently, many veterans with diseases other than Gulf War neurological syndrome that made them feel bad were mistakenly counted as cases, and conversely, many with typical symptoms of Gulf War neurological syndrome but who were not very ill with it were not counted as cases. This severe degree of bidirectional misclassification has caused all studies from the Kings College London group to reach spuriously negative conclusions.”


 
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