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Millions with autoimmune disease need better solutions

Jonathan Edwards

"Gibberish"
Messages
5,256
Sorry if you've answered this elsewhere, but if autoimmunity is truly random, why is it that people often seem to get more than one autoimmune disease? For example, I have CREST and Graves' disease as well as ME.

The evidence indicates that you start with a genetic risk for one or more autoimmune diseases. Some of the risk genes just favour one disease, some increase risk for a range of autoimmune diseases. If you have the risk genes then at some random time in life an immune error trips - and as far as we know without any trigger. If your genes increase risk for several autoimmune diseases you may trip more than one error - but at different times. Most people with more than one autoimmune disease do not get them at the same time. For identical twins with the same genes there is a likelihood that both will get the same disease but at quite different ages.

So the random factor relates to WHEN you get the disease rather than IF you will get the disease, if you like.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
If you have anything resembling ME/CFS, dysautonomia, autoimmune disease of a rarer type, and I could go on and on, you are usually out of luck, even in the U.S. I wish this was not the case but it has been my experience and I have spent three years trying to find answers and am the sickest that I have ever been.

ETA: Sorry I got off-topic and didn't respond to what I just quoted. I am confused how auto-immunity is not related to infection? Prior to having mono/EBV and another infection, I did not have hashimoto's or any autoimmune condition and now I have several. Even the doctors who will not take a risk to treat me believe that my dysautonomia and auto-antibodies were virally mediated/caused. Is this not true?

I am not sure it is a matter of being out of luck in terms of medical attention. The main reason for not using therapies for autoimmunity is that we are not at all sure they produce more benefit than harm. We need more research but not offering treatment may be the wise thing to do. Clearly I am not in a position to comment on a specific situation without all the details.

What does seem crazy to me is that if we had the money that is spent on health car in the US and used it to provide a universal insurance system linked to a research commitment, where nobody was motivated by personal profit, we would almost certainly have cracked these diseases long ago. In the US huge amounts of money are spent on making doctors and their indemnity lawyers rich and in the UK so little is spent people do not even get care. Maybe Norway has the answer - they spend about as much as the US but through a universal insurance system.

Lots of doctors believe that autoimmunity is triggered by infection because that theory was proposed in the 1960s and it got stuck in the textbooks. But since the 1980s we have known that the epidemiology does not support it. ME may be different, in that it does seem to be triggered by infection, but then it may not be autoimmune. In the general population there is no link in time between infections and autoimmunity. People may get their autoantibodies detected after infections because they are having tests done but they may have been there for years. In the autoimmune diseases we know most about we know that the autoantibodies are expanding for five to ten years before symptoms occur. The start of symptoms is not the start of autoimmunity.
 

Justin30

Senior Member
Messages
1,065
The main reason for not using therapies for autoimmunity is that we are not at all sure they produce more benefit than harm. We need more research but not offering treatment may be the wise thing to do. Clearly I am not in a position to comment on a specific situation without all the details.

Really? So if you have an autoimmune disease it is not neccesarily better to give therapy like all the drugs approved for the many autoimmune diseases?

ME may be different, in that it does seem to be triggered by infection, but then it may not be autoimmune.

Do you have an opinion as to what it may be? 1 Disease or several different diseases all called ME?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Really? So if you have an autoimmune disease it is not neccesarily better to give therapy like all the drugs approved for the many autoimmune diseases?

Do you have an opinion as to what it may be? 1 Disease or several different diseases all called ME?

A few drugs are licensed for specific autoimmune diseases like rheumatoid or lupus because we have reasonable evidence of good risk/benefit profile but across the board of autoimmune disease in most cases drugs directed to the immune response are useless (as in Hashimoto's disease). And in the majority of less common autoimmune diseases we have very little idea whether drugs are useful or not (e.g. CREST or dermatomyositis or channelopathies). There are things to try and it may be worth doing so but each case has to be judged in terms of potential benefit or harm.

All autoimmune diseases are different in some respect or other so there might be a form of autoimmune ME that is different in this respect but we have no idea.
 

Valentijn

Senior Member
Messages
15,786
I am a skinny type 2. Not all type 2 diabetics are overweight overeaters.
We met one who was a helper at the hospital when I was there for metabolic testing most of the day. Skinny & active guy, never overweight, but had type 2. My fiance developed type 1 (previously "juvenile" diabetes) at around age 40.

So I don't think we know nearly as much about Type I or Type II as we think we know :p There's a lot of assumptions about excessive carb or sugar consumption burning out insulin receptors for Type II, but there are some cases where there was definitely no such excessive consumption.

And that seriously calls into question the assumption that such dietary, exercise or weight factors are usually the actual cause of the disease, rather than being correlated with the disease in a different manner. Is eating too much causing insulin resistance, or is insulin resistance causing increased eating? Or is some other factor causing both?
 

Gingergrrl

Senior Member
Messages
16,171
I am not sure it is a matter of being out of luck in terms of medical attention.

I have some new avenues to pursue but I am out of luck with the path of treatment that I believed I was on yesterday b/c it was denied to me by the doctor.

We need more research but not offering treatment may be the wise thing to do. Clearly I am not in a position to comment on a specific situation without all the details.

I disagree that not offering treatment is the wise thing to do but I also know that you do not know all of the details re: my situation so you cannot comment which is more than fair. I am in a place now that more than one doctor has said if my lung weakness does not plateau, I could end up on a ventilator. I used to be afraid of the risks of certain treatments but am now much more afraid that I could die if I do nothing. I am willing to try IVIG, plasmapheresis, RTX, etc, and am now going a different avenue to pursue this. I have multiple auto-antibodies with one in particular that we believe is at least partially triggering my symptoms.

In the US huge amounts of money are spent on making doctors and their indemnity lawyers rich

I absolutely agree with you and I despise this part of the system. There are doctors that charge the patient thousands of dollars for a 15 minute appt (these are not the ones that I see LOL) but it is very common.

In the general population there is no link in time between infections and autoimmunity. People may get their autoantibodies detected after infections because they are having tests done but they may have been there for years.

It is true that the two auto-antibodies I learned recently that I have were not tested prior to me becoming ill so I do not know when they developed. I also have no doubt there is a genetic component. However, I did not have Hashimoto's disease prior to having an infection and was tested.

Really? So if you have an autoimmune disease it is not neccesarily better to give therapy like all the drugs approved for the many autoimmune diseases?

Justin, I agree with you 100% (as you already know!) and if I am willing to risk my life for a treatment, why should a doctor or insurance company deny me? It is rhetorical question and I know the answer but I disagree with it.
 

Gingergrrl

Senior Member
Messages
16,171
I'll give you two personal stories of the incompetence of Kaiser Permenente. Hell, its a criminal institution, IMO.

I just wanted to clarify that I have never had Kaiser myself and always declined it for better insurance when I was working. But I have had many friends who had Kaiser and witnessed the nightmares that they encountered with the worst being my close friends death from lung cancer b/c Kaiser told her she was fine for about a year until it was too late.

And in the majority of less common autoimmune diseases we have very little idea whether drugs are useful or not (e.g. CREST or dermatomyositis or channelopathies).

I missed this quote earlier but I do not see why someone with a less common autoimmune disease such as a channelopathy (what I have) should be denied drugs or treatments that could be useful? In some cases, not trying the treatments, could be fatal it the antibodies are attacking the brain (not in my case) or breathing (my case.) Why should only common diseases like lupus or RA get offered treatment?
 

Gingergrrl

Senior Member
Messages
16,171
Sorry that you have not been able to move forward with this treatment path @Gingergrrl

Thinking of you :heart:

Thanks Andy and I really appreciate it. I don't want to detract the thread too much but I agree with the title that millions with AI conditions need better solutions (or not to be denied treatment by the doctor or insurance company) and am glad it was posted. Thanks @Kati!
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
Why is it that the patient can't have more say in the decision-making? If the doctors consider that there might be potential benefit, but are also completely candid about the risks of harm of treatments, surely competent adult patients should be able to say "I accept the risks and want to try this?"
At some point, the potential harm of doing nothing must outweigh the risks of treatment.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
There are no persistent autoantibodies. T cell autoreactivity is also hard to pin down. I gather that it is now seriously being considered that type 1 diabetes may be a form of early onset islet cel exhaustion that like type 2 is more to do with sugar than immunity. It does not behave like any of the other true autoimmune diseases.

What do you mean by T1 diabetes not behaving like other true autoimmune diseases?
 

Kati

Patient in training
Messages
5,497
Thanks Andy and I really appreciate it. I don't want to detract the thread too much but I agree with the title that millions with AI conditions need better solutions (or not to be denied treatment by the doctor or insurance company) and am glad it was posted. Thanks @Kati!

i posted it because I felt it was important to see what was happening in other diseases, the ones that actually belong to medical specialties, and how diseases which affects predominantly women are treated. The dismissal of women, the difficulties and delays in obtaining a diagnosis are everlasting themes which parallels with the issues that the ME patients community experience.

While @Jonathan Edwards points out the pitfalls of lumping different diseases which may not be autoimmune after all (diabetes) it remains that research for auto-immune diseases is over-shadowed by the 'sexy diseases'. I just read today from Vincent Racaniello's Facebook page how Zika research is progressing so ever quickly. This is proof that when there is a will, there is money, and when there is money, research can progress very, very quickly. (granted, this is public health concerns, especially at the eve of the Olympics being held at Zika's ground 0)

Sadly, women's health especially life altering diseases will never be in the forefront unless there is political will.

Edit to add: what was reported was the patient's perspective, which is oftentime disregarded in research and in health care. Patient voices is critical in shaping health care and in assessing the needs of patient populations, more critically so for the most neglected/ underfunded / underserved diseases.
 
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Gingergrrl

Senior Member
Messages
16,171
The dismissal of women, the difficulties and delays in obtaining a diagnosis are everlasting themes which parallels with the issues that the ME patients community experience.

Sadly, women's health especially life altering diseases will never be in the forefront unless there is political will.

I totally agree on all counts and there was certainly money to be found (in the US) for male pattern baldness and erectile dysfunction research. Am not saying this in any way to minimize the suffering of any of the men on PR (many who I love dearly :heart:) but ME/CFS and autoimmune diseases that mostly affect women are not high on the research priority list.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
I have a lot of family who are diabetics, type 1 and 2
over the years, the beliefs on it have swung, and now they recognize there is sort of 1.5 where one can lead to the other

and all the research shows Type ONE *is* linked to a trigger by an infection.
that has got TWO of my family, both as kids, both get an infection and...Type 1.
doctor and a nurse tried to f'ing "euthanize" my aunt (back in 1950s), my mum a nurse, walked in on them, she bawled them out demanding if they liekd playing Nazis and seeing how much air it took to murder an infant?
not really believing they could DO such a thing...until afterwards and it sunk in.
my aunt, 10 years old was watching the bubbles in the IV line travel down...paralyzed, knowing it was death crawling to her veins.
That *REALLY HAPPENED*. how many other poor kids got scragged by such bastards, and never noticed?

as said, there's a very heinous conflation, another criminal propaganda scam, to mix the idea of diabetes and "fat scum over eating", to make enforced rationing acceptable.
folk can now accept that the crap flung at M.E. patients IS a bloody conspiracy
but there's many more
as always, not simple "One Big bad Evil Guy" plotting it all, various groups and outlooks overlapping, sometimes out fo sheer bloody arrogance to shove things down folks' throats "DO what daddy tells you!"

there's too much money and power involved in this, as per bloody usual, for the "truth" to be known
if it is sugar, or pesticides, or whatever as a trigger, they don't want it to come into the light, doesn't matter what it is exactly, but they won't have their "apple cart" upset so whitewash it.

and some of them have links with the foo companies, and the idea that "refined sugar is bad"...is troublesome to their bank balances.
again, not as simple as "One side one actor behind these conspiracies of power.

Power sources (like oil), food, medicine, water, transport, and information, control them and you have the populace by the balls
the sums of money are vast, the amount they are willing to spend on broad cover ups using gits like the Science Media Centre PROVES this.
just like the issues on pesticides, vaccines or any other damn thing, they taint the evidence, and use flimflam artists and bought and paid for "experts" to "fudge" it.
You can't trust any damn thing when it comes to area where power and money have serious interests :/

Again, the folk in my area are dying like flies, it has F*** ALL TO DO WITH US BEING LOW-BROW, MORONIC, APE-LIKE SCUM, as we are painted as by vermin in the media, see Kelvin McKenzie of "The Sun" (oh ye gods the irony of that!).
it's because we were poisoned very damn day of our lives by the enormous steelworks , the very ground poisoned by 2 centuries of previous metal works, cement works etc.

they built some new houses, and folk left them in a panic, nose bleeds, vomiting etc
built on a munitions factory site AND an X-ray device factory site. Toxic and radioactive.
and of course the incredibly corrupt local government said "oh it was just mass hysteria!"
and what SOBs keep using that line to "brush away" problems such as M.E.?

our modern world is toxic as hell, at least for those in many urban areas, and even, for farmers etc
we have fast travel which allows diseases to spread far faster than they can be stopped or even identified at times.
and yes we are (or were in years previous) eating too much refined sugar and *other* things not good for us.
all adds up.
no wonder our immune systems are going nuts.

but it's too much of a "Hot potato", such stuff must not be thought of by the Proles!
that is why He Who Must Not Be Weaseled, the Nyarlothotep of the Caduceus :p and his ilk exist.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
my ravenscraig 3d map.jpg


If anyone thinks my rant was ridiculous
please read up on Agent Orange, PCBs and links ot Diabetes



this is the 3D map I was working on of my area
it's to exact scale
my house is the little Red box (2 up 2 down block of flats) on right hand side, directly in prevailing wind pattern, 1 kilometre form the 3 grey boxes in the steelwork site which were the coking ovens
coal made into coke, horrible toxic crap form this used to make all kinds of useful but toxic/explosive compounds
and one of their pollutants are PCBs as well as mercury, amount of coal that factory burned was truly enormous, on the scale of the largest electric power stations iirc.

the folk in Craigneuk to bottom of the 3D parts were closer to all,. and though less direct wind, the geography and dense fumes from certain process got them even more.

I'm glad in one sense I've lost nearly all social contact, because so many of the folk I knew are DEAD.not talking "Old" tlakng folk from 50 and down, even in 20s and 30s the cancer and chronic health problem rate is enormous

there were four of us, best mates as we grew up, so now I have M.E, etc
and my "Punk rocker" pal has Fibro, his spine is crumbling from another weird condition etc

don't tell me pollution doesn't cause health problems including autoimmune ones.
Frikkin witches brew of poisons we were steeped in :(
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
http://www.endocrineweb.com/news/diabetes/17611-link-between-endocrine-disrupting-chemicals-diabetes


New research presented last week at the annual meeting of the European Association for the Study of Diabetes (EASD) in Stockholm adds weight to the growing body of evidence linking endocrine-disrupting chemicals (EDCs) with diabetes.
One study—a meta-analysis of 21 earlier studies involving more than 66,000 people—found that exposure to any type of pesticide was associated with a 61% increased risk of diabetes, with some pesticides appearing riskier than others.
A separate study of 639 women in Crete, Greece, found that those who had elevated blood levels of polychlorinated biphenyls (PCBs) during the first trimester of pregnancy were more than four times as likely to develop gestational diabetes.
“The findings are interesting scientifically as they help us understand which disease pathways may be affected by pesticides,” said Ioanna Tzoulaki, PhD, lead author of the meta-analysis and senior lecturer in Epidemiology, Imperial College London’s School of Public Health, UK.
Indeed, the meta-analysis echoes in human populations what researchers have demonstrated in animal and laboratory studies: Exposure to endocrine-disrupting chemicals can provoke precursors to diabetes and even diabetes itself.

EDCs have been shown to do everything from slash insulin levels and raise serum glucose to set-off hyperinsulinemia, worsen glucose tolerance, and insulin sensitivity and reduce insulin-stimulated glucose uptake. The chemicals are also capable of altering the expression of genes, which in at least one study led to a rise in blood glucose levels analogus to those seen in adult-onset diabetes.

The Crete study, meanwhile, sheds light on a less-studied phenomenon: The ability of EDCs to raise the risk of diabetes developed during pregnancy. "Our findings support the idea that early-life exposure to endocrine disruptors may exacerbate gestational diabetes,” said principal investigator Leda Chatzi, PhD, assistant professor of epidemiology and nutrition at University of Crete, Heraklion, Greece. “It is important to develop interventions in pregnancy, including dietary and lifestyle changes, to minimize the effects of early-life exposure to persistent organic pollutants.”

Both authors acknowledge that their studies are observational and that lifestyle factors including diet, weight and exercise are critically connected with diabetes. But the role of chemicals cannot be ignored, they say.
"We often think of insulin resistance as a consequence of overeating and lack of exercise," says Laura Vandenberg, PhD, assistant professor of environmental health at University of Massachusetts, Amherst. “But chemical exposure can promote insulin resistance, too."

Chemicals known as endocrine disruptors—so-called for their ability to interfere with the body’s endocrine system—have come under scrutiny in recent years amid mounting evidence of their association with health problems ranging from developmental and reproductive disorders to cancer, obesity, and more recently for their link with diabetes.

Results from animal models, human clinical observations and epidemiological studies converge to implicate EDCs as a significant concern to public health, reports the Endocrine Society.
A large number of chemicals have been identified as endocrine disruptors, among them certain pesticides and organic pollutants such as those in the two studies: DDT, dieldrin, heptachlor, HCB and PCBs.
Even though some endocrine-disrupting chemicals like the pesticide DDT and PCBs, used in electrical equipment, were banned in the 1970s in the U.S., they are still used or have been used more recently in other parts of the world. And the very qualities that made them so effective for industrial and agricultural use—their ability to stick around and get the job done—are the same ones that make them hazardous to public health and the environment: The chemicals are slow to degrade and can persist in the environment for decades. People around the world continue to be exposed through air, soil, water and food.

“When considering the reality that diabetes is rising in every country worldwide, and that environmental pollutants are abundant, there is a real urgency for prospective, high-quality research, said Lisa Staimez, PhD, assistant professor at Emory Global Diabetes Research Center at Emory University in Atlanta. “That research should in turn inform policies aimed at reducing the burden from diabetes.”

More than a billion pounds of pesticides are used each year in the U.S., according to the Environmental Protection Agency. The vast majority are applied on crops, but the chemicals are also used on golf courses and lawns and in schools and homes. Not all have been fully tested for their endocrine-disrupting abilities. Pesticides include herbicides, which are used to control weeds; insecticides, which are used to control insects; and fungicides, which are used to prevent mold.

Meanwhile, rates of diabetes and other metabolic diseases have risen dramatically over the last several decades. Globally, more than 170 million people suffer from diabetes—a number some researchers say will reach 366 million by 2030.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
What do you mean by T1 diabetes not behaving like other true autoimmune diseases?

To call something an autoimmune disease I think one needs to have good evidence for an adaptive immune response to self antigen - either an autoantibody or anti-self T cells. The innate response cannot really be 'auto' becuase it never changes and does not discriminate self from non-self in an 'optional' way.

In type 1 diabetes I gather there that antibodies to insulin or other islet proteins are found transiently in some cases but they do not seem to be a consistent finding as in the autoimmune diseases where we think the antibodies are actualy pathogenic. People also talk of T cell responses to islet cell proteins but the trouble is that you can get T cell responses to anything if you jigger the culture up a bit with cytokines. To my mind convincing evidence of pathogenic autoimmunity ought to be backed up by a sufficiently solid assay for anti-self activity to provide a clinical diagnostic test and as far as I know there is nothing like that for diabetes.

People often talk about diseases being autoimmune with very flimsy evidence. MS is not a typical autoimmune disease because nobody has found consistent anti-sefl antibody. There are antibodies in the wrong place but that is another matter. There is an assumption that there are antibrain T cells but I don;t think they have ever been found.

The other odd thing about Type 1 diabetes is that it occurs in childhood, and most autoimune diseases increase in incidence as you get older and are specifically more common in women. That is not the same for all but T1D is very anomalous.

Someone mentioned that you can have type 2 diabetes and be thin. I think that may just be a reflection of the fact that these terms (type 1 and type2) are made up categories based on speculation and may turn out to be wrong. Maybe if you are thin then by definition you should be called type 1, or maybe it is more complicated.
 

lansbergen

Senior Member
Messages
2,512
To call something an autoimmune disease I think one needs to have good evidence for an adaptive immune response to self antigen - either an autoantibody or anti-self T cells. The innate response cannot really be 'auto' becuase it never changes and does not discriminate self from non-self in an 'optional' way.

That is a clear short summary.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
The evidence indicates that you start with a genetic risk for one or more autoimmune diseases. Some of the risk genes just favour one disease, some increase risk for a range of autoimmune diseases. If you have the risk genes then at some random time in life an immune error trips - and as far as we know without any trigger. If your genes increase risk for several autoimmune diseases you may trip more than one error - but at different times. Most people with more than one autoimmune disease do not get them at the same time. For identical twins with the same genes there is a likelihood that both will get the same disease but at quite different ages.

So the random factor relates to WHEN you get the disease rather than IF you will get the disease, if you like.

This is interesting.. I first developed ME 2 years ago, and some months ago psoriasis around my eye (which other family members also have had). You might remember me saying that i had a huge amount of t-cells with CD45RA and CDRO double positive phenotypes, which at least some researchers think might predispose for autoimmunity. May it be that such a phenotype predisposed me? It`s hard to say when a lot of patients have that phenotype without ME.. Is it right to say that such a phenotype is down to genetic expression? Anyway, I think you are right that genetics probably play a role, but not the whole role.