I think this is a really unfair way of running a poll on what the particular causes of WG and other forms of autoimmune disease are in this clearly biased manner. Most people ( no disrespect to anyone) do not fully understand what latency periods are, how exposures work. Most won't know that exposures can happen anywhere at any time or even what those exposures may be, where they may be found in places or in work exposures you wouldn't have thought of. The two things that have been strongly linked to causing autoimmune diseases crystalline silica & asbestos, accepted as such, considered proven by many, do not even feature on there. It's terribly biased. There is much peer reviewed research published, as evidence of this. It's difficult to understand the many different headings these publications would come under, so unless research is your job perhaps you wont necessarily find it, and certainly not with a few Google searches. Ask Dr David Scott, Dr Richard Watt, Professor David Scott . Even though Dr Richard Watt and Professor Scott acted for the defence as medical expert witnesses in a particular legal case against a WG sufferer, they still decided in a joint report that a patients WG had been caused by his workplace exposure to wood dust from wood composite board such as MDF, chipboard, particleboard, asbestos cement board would have caused his WG had he have been exposed to at least 5 years of a high level of exposure to crystalline silica, which the sufferer had & more. To give you a picture anyone can understand, if you place a new penny next to a grain of silica that looks the size of a full stop that is up to the daily limit that is deemed safe, over that would be considered too high. Then you have to look at where silica can be found. As it was with asbestos its in so many places you just wouldn't think of or consider. Asbestos has been found in baby talc, children's crayons, cigarette filters, brake linings, artex, even teachers sticking drawing pins in display boards have been found at risk. Wood and wood dust so hence many wood products natural & composite contain it. Cosmetics, dental composites, cigarette papers, paper, medicines and tablet production, scouring powder, coal, fiber cement boards, the list is endless. Even those exposed to silicone via implants are finding that they are suffering with autoimmune diseases. Vaccinations, needles are coated with silicone to make it easier for the needle to pass through the skin. Pesticides have silica added because its sharp and scratches the hard outer cuticle like shell of the pest, maybe why pesticide exposure has been linked to causing autoimmune diseases. The incidence numbers have risen at phenomenal rates they can't all be due to better diagnostics by Doctors. Most people who have been exposed to silica or asbestos would be unaware of how or where it when if asked, especially if things weren't explained to them before hand. Most wouldn't understand fully what is meant by latency periods or just how far the exposure could have been. See the discussion thread on dust exposure & Wegener's for yet more evidence from other sufferers. Even victims of the WTC dust have high incidence of autoimmune disease attributed to the dust. So to ask people to complete a poll without any prior explanation, combined with extremely limited & vague tick boxes is very wrong, misleading, unfair & cannot be held as a true representation & wrong to use the good reputation of Vasculitis UK to do it knowing that others will use its reputation as providing validity to the poll. You may not agree with current findings but the evidence now is overwhelming. You should at least consider it but only after reviewing the evidence available to all. The poll should be withdrawn, ask for personal experiences instead, people would be much better educated than by a poll. After all as Dr Jayne himself said, if this was due to a virus or infection alone then more people would be suffering from AD than currently are, more in families for example. So please take the outdated blinkers off. I know of a group of stonemasons' who suffer from silicosis and also GPA,(WG) etc., even miners many of those were suffering from respiratory disease but also Caplan's disease, RA, another autoimmune disease, all exposed to crystalline silica. Compelling evidence that deserves considering. Ask these people what caused their GPA (WG).
'Cause for your Vasculitis' poll is unfair. - Vasculitis UK
'Cause for your Vasculitis' poll is unfair.
I tend to refute your conclusions although as you say silica may have an underlying relationship in auto-immune disease.
My reasons are as follows, in my working life I have been an Arboriculturist, gardener both in landscaping and in maintenance, I have worked in London Underground and acted there as the Health and Safety representative entering areas that even supervisors and managers were not permitted. London Underground and especially where I worked is rife with asbestos, brake dust and dust from the tunnels mostly ballast related. this is a known fact. I also took part in company research into any harmful aspects of that environment including noise protection. And yes, I used full safety gear when doing so. Within London Underground there are approx. 15,000 employees yet I am the only one that developed an auto-immune disease and that over a period of 20 years employment with them (research within Occupational Health and the Unions post my acquiring this disease.)
Working within the horticultural and arboricultural industries I have been exposed to pesticides, herbicides and wood dust as well as industrial fuel oil and coal and its derivatives.
I also live in London which has a high pollution from traffic and where I live is in a Victorian house.
So where would I start to apportion blame for my disease. I could consider also that I was under extreme emotional stress since 2004 and in 2009 up to 2012 when I was diagnosed and this was exasperated due to my involvement as the industrial representative as well at that time. Also stressful!
I do know that stress lowers the immune systems ability and makes one more subceptible to viral infections which is what happened in my case. It is then that the immune system reacts to fight off the infection but fails to switch off, the result being that it causes inflammation affecting various organs in the body and the which affected determines the type or types of auto-immune disease you get. There is also the genetic susceptibility within the individual to acquiring such diseases. In my case there has been no past occurrences within my family history both either through the male or female lines to suggest this. Yes, I researched that too!
So for you to say so emphatically that silica is a primary cause of auto-immune disease is refutable. It may be one of many contributary causes but even today, given the best research, we cannot be exact as to what causes auto-immune disease to occur. Hence such polls. At best they are an indicator as to a common denominator and as such become an aid for research. Perhaps one day given such a broad approach we may find a cure and a means to prevent it from occurring.
But to prevent it we have to first find the cause. Prevention is better than cure. There is now overwhelming peer reviewed evidence for silica and asbestos and this is widely accepted. We have to start somewhere and as I've said before genetics does play a part perhaps in which type of AD someone goes on to suffer from after certain exposures. Yes I've researched the causes too. I never said it is the only cause. A poll is only as good as its questions, to limit the options can scew the outcome.
We were asked to do this poll by a third person.
The question that is asked in this poll is "What do "YOU THINK" was the trigger for your vasculitis? Many people have their own personal theories, the poll does not ask for expert testimony or published papers, just what the "person" thinks was the trigger.
You have given your opinion of what you thought was the trigger for your Vasculitis others also have their own opinions.
As for the WTC, the poor people there, were exposed to hundreds of different toxins due to fire as well as the dust due to the collapsing buildings.
Numerous possible triggers have been implicated for Vasculitis and other auto immune diseases, one of these possible triggers is Silica. In the case of particle boards there are synthetic resins used in the manufacture, the dust from certain types of wood is known to be carcinogenic which is why dust extraction is now considered to be essential for those machining wood.
This poll is not intended to be a piece of scientific research, merely to give an indication of what people diagnosed with vasculitis think triggered their vasculitis. It is a subject that is talked about often, by patients in online discussion forums and in support groups.
It seems you are being very selective with your "evidence". For example the increase in allergies and autoimmune diseases coincides with increased use of antibiotics and thermoplastics such as PVC and numerous other features of modern life. But we would not claim any direct link.
We are not really happy you are quoting Drs Scott, Watts and Jayne out of context.
I didn't say it had asked for expert testimony or published papers, merely used them as examples.
As regards WTC dust I based those comments on peer reviewed publications specifically on the high incidence of autoimmune disease that has been experienced since and also on the lengthy conversation that I had with the Doctors who phoned me that are monitoring the victims. Of course there were cancers too but the high incidence of autoimmune disease is causing as much concern and the research is enlightening, we should learn from these tragedies.
Your knowledge of the wood industry is extremely limited clearly. What you say about wood dust is not correct. It is wood dust per se that is classified as carcinogenic, it's a group 1 carcinogen not wood itself or its resins. ALL wood dust is considered carcinogenic not just certain types and included in that is also wood dust from wood composite boards too, that you refer to as 'particleboards'. They do not know which element of wood dust it is that renders it carcinogenic but it contains crystalline silica and that is a known classified carcinogen also linked to causing autoimmune diseases. Masks provide little or no protection, even respirators don't really provide full protection, nothing that works on a filtration system does, never could. Nor does the dust extraction you say is essential. You would have to understand all about particle size to understand the point, a complex subject at best, too complex to explain here to you and no offence meant but I would probably be wasting my time anyway. You should learn more about it perhaps. Nanotoxicology too and how particle size matters and why the smaller the particle the more toxic, more harmful it is and how it induces an inflammatory response. It's not the dust you can see that is the most harmful, it's the dust you cant see with the naked eye that is. Hence why masks and 'dust extraction' provides little protection in reality, as anything that works on a filter system allows air through, it's what the basic process of filtration is based on. If it allows air through therefore it allows the more toxic, more harmful particles and the contaminants attached to them through to be inhaled in copious amounts. Air may look clean but it's not in these places & that is well documented. Safe levels are rarely adhered to but little monitoring and enforcement us carried out anyway. According to WHO there is no safe level of exposure to any known carcinogen, so makes a mockery of any alleged working exposure level set surely. If the risks are increased for various cancers then that must also apply to anything that it contains that can cause autoimmune disease. In the wood industry there has been a huge problem & they have over decades undertaken research to find out what causes the premature blunting of the industrial strength metal diamond & tungsten carbide tipped blades which always finds the cause to be the high silica content in both wood & wood composite boards, something not mentioned on MSDS but they are a farce anyway. If it does so much harm to these super strong metal blades, then what harm is it causing, how much scarring and inflammation is being caused to the lungs of those inhaling copious amounts of wood dust containing these harmful particles?Silica is found in the lung lavage of wood workers. Wood dust from wood machining is infinitely much finer than wood dust from other processes & it's why the IARC has categorised those working as wood machinists as most at risk of all the wood trades, to the copious amounts of very fine wood dust particles that they inhale. Wood composite boards are made from 'recycling' old contaminated wood waste extracted from construction & demolition waste from the demolition of old buildings another aspect to consider as it increases the level of crystalline silica too, possibly even asbestos. Please do not suggest that those working in the wood industry are fully protected from harm by any 'dust extraction', including from those elements that can cause AD's, just because dust extraction should be used, as this is definitely not the case. It's only partially protective and only then if it's properly maintained, but in lots of wood machining & other wood plants it is not. Even in wood machine shops that appear relatively clean the better ones have wood dust sensors, which are there because of the wood dust particles that cannot be seen with the naked eye that stay permanently suspended by static electricity, but these companies that have them are few & far between, especially in SME's, & are there for the reason that wood dust is highly combustible and highly inflammable due to the smaller particle size. Particles so small that when inhaled can pass through the lung alveoli into the bloodstream to affect any part of the body. Wood dust when ignited explodes almost, due to the very fine smaller particles suspended permanently in the air, as fire passes from one suspended particle to another, at lightening speed and acts like a fireball engulfing a building in seconds. I have already provided sufficient proof of the reasons why myself and others consider silica and indeed asbestos as being a cause for AD's in other threads, which most people welcomed. I never said it was the only cause just perhaps a common denominator if you look deeply enough, which most wouldn't.
I have based my opinion on thorough research over many years, of copious amounts of peer reviewed evidence, etc., and from having spoken to many eminent scientists from all over the world that have written it, only mentioned such as peer reviewed evidence to prove my point. At least I have done that before stating what I have and its based on experience too. If I hadn't have done that I would have been accused of not providing any evidence at all to back up my statements no doubt.
Please don't wrongly accuse me of being devious by being 'selective' with my 'evidence' when you then also disparage me for providing any at all, where is the sense in your comment? What was I supposed to do to keep you 'happy', as you insist you must be, also provide all the evidence relating to other suspected causes that have been looked at by researchers, that to be honest the evidence of is scant, that I have also reviewed? You need to make your mind up.
I did not quote anything out of context as you state. Just because you didn't understand the context in which it was used does not mean it was out of context. Again you accuse me of devious means. Why would I do such a thing?
Are we only allowed to state our opinions, share our considerations if you're 'happy' with it? So if you don't agree with what others say, then we're not allowed to say it? Not exactly fair or just is it. I have heard you ban people who say things you don't agree with, is that true, as I'm beginning to wonder.
When so much research has been done into crystalline silica and asbestos as causes for autoimmune disease then surely it merited a mention in your list of options? Why was it left out, what was the reason for that? As I've said before most don't understand the complexities of exposures, latency periods and such, so possibly not really able to say for sure where or how they think they might have been exposed or even to what exactly they were exposed to or for how long or what their trigger might be. The poll in that format proves nothing. Polls are undertaken to provide an insight or to prove a point but to do that they have to be fair and balanced. To leave out the biggest contenders as triggers/cause as options meant it wasn't. You never know where these things can be used or quoted especially when undertaken & quoted under such a renowned banner such as that of Vasculitis UK, where no consideration is given as to whether or not the poll was undertaken fairly. It can give an unfair view. You have to be responsible when you're conducting these things on behalf of an organisation surely. Some people take them seriously.
So much more I could say but probably not worth me doing so, as apparently we're not allowed to share anything unless you're 'happy' with it.
It is widely accepted that there is no one single cause of autoimmune disorders. Nor any postulated cause that affects everyone who is exposed to it. That is what makes the entire thing so difficult. Many people are convinced it was their flu jab - I'd never had one in my life. I've never been exposed to many of the suggested factors. I have an autoimmune vasculitis.
On a forum like this I think you have to accept that people have differing needs - and while there may be a need for an identification of a causative factor it is NEVER going to be found from a poll done amongst a very small population which is, in any case, skewed because it is an on-line population. In such a poll you can be looking for what patients think - because knowing what the people who have the disease THINK often helps you to manage their expectations in the meantime. If nothing else, for example, by explaining that it very probably wasn't the flu jab that did it and it is still in their best interest to have it next winter.
"a complex subject at best, too complex to explain here to you and no offence meant but I would probably be wasting my time anyway" - maybe you think that isn't offensive but don't look down your nose at the work done by this or any other forum or charity. I for one am quite well aware of the significance of particle size and aerosols and chemicals for one thing - but this isn't the place to discuss it.
It isn't the role of a forum/message board/blog - whatever you want to call it - to do research of the sort you want validated so I think you are being a bit unfair in shooting the messenger. Correlation is not causation - and please don't try to get into a slanging match at me for saying it.
And before you ask - I'm not a member of Vasculitis UK.
Clearly you haven't read what I've put correctly. You accuse me of things I haven't done, have taken comments I've made out of context. I certainly never have 'looked down my nose' at anyone, nor would I, not in my nature to do that. I have spent all my adult life helping others and have raised money for many different charities and still do, so very unfair to imply that I don't understand or appreciate others who do too. I said more or less what you are saying. I've just taken the time to fully research it from all angles before forming my opinion first. Was just trying to clarify that I hadn't done this lightly and that I'd even taken the time and trouble to speak to the eminent authors of those research studies. Pity you couldn't see their responses to me, all very positive. Maybe for those who think their trigger is the flu jab maybe they're more right than you seem to think. Maybe it is the silicone (which contains silica as an element) that lubricates the needle that was the culprit. Are we not allowed to discuss that possibility? The 2 main contenders were missed off the list, dust in general too. What's the point of running a poll that is unfair? Had you have been a member then you might have been aware of previous threads on this issue & so would have known some of the history behind it. Silica is the one most researched and is accepted widely now as a cause, it's wrong to say otherwise. I don't see evidence of a ' slanging match', only a difference of opinion. When heading an organisation, a group of people, no matter what your own personal opinions are you shouldn't let those get in the way of others expressing theirs. With the glory also comes responsibility to be fair. You might not have liked what I said but that doesn't make it wrong. Nor do I take part in 'slanging matches', as you put it, not sure what your intention is by that remark. Was it to prevent me the right of reply in the face of the very scathing comments you've made about me based on absolutely no knowledge of me as a person, or to infer something else about me? Not sure what your intention is there. You picked on me remember, not the other way round.
Hi, I enjoyed reading your very interesting comments and appreciate all the knowledge you have regarding possible causes of autoimmune diseases. Thanks suzy
I said I wasn't a member of Vasculitis UK - I didn't say I wasn't a member of this forum and I have read your posts in the past. I don't think I was "scathing" nor did I "pick on you" but you are perfectly welcome to your opinion. You were pretty caustic in your response to Suzy who administers this forum. I was just trying to point out the limitations of a forum. That's all.
Yes limitations, so was it fair that I was accused of being 'selective' by her, implying it was done with a devious intent or ulterior motive? Do the limitations not apply to me too? I'm in a hospital trying to type this on a mobile phone, very limiting too, especially when feeling so lousy.
Maybe I'm being thick here-I probably am-but I'm not quite sure what your complaining about exactly. Someone has suggested that we have a 'poll'. The reason was to see IF there is a causal link-deliberately emphasised the 'if', for a reason.
Sorry but, unless I have completely miss-understood you (sorry if this is the case) then how would start any research at all? Surly a 'start point' has to be given, don't it?
Once again sorry if I've got you all wrong. I would, very much, like to discuss this with you further.
We are still in January so Happy New Year.
AndrewT
Oh dear 😳
In the poll I ticked the box as "stress" being the start of my GCA, at the time I was working for Social services and had a really bad experience, prior to that experience I was very well and had NO health problems, I was 54 at the time, [ now 71 ] so I can only assume it was stress. And as the poll said "what do YOU think started your vasculitis " Regardless, I did carry on with the same job and completed 28 years service.
Well, I was going to reply when I read Wooddustaffected's long diatribe but I was asleep by the end of it.
It lost all meaning for me when everyone got lumped together in one basket. You all seem to be very knowledgeable about these diseases but it just seems all too complicated for me to contemplate.
My husband and I have looked into his history, surroundings, occupations and can find absolutely no reason for him contracting his WG/GPA.
So thanks to you that replied to Wooddustaffected, you've done it in language I couldn't hope to match.
Let's all keep being able to have our opinions, but remember that they are our own opinions and long may that continue.
Like you i gave up when it got too long winded, i never got to the end.
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Seems I'm damned of I do and damned if I don't. I merely responded to the comment about being 'selective' but then my providing further explanations that was wrong too. Unfortunately for myself and my husband we are, we are told, the only husband and wife couple in the world to both have WG, so in the very unique position (no didn't meet via a support group). As a result of that very experienced Doctors decided ours would have a cause as the odds of 100 million to one suggested other than mere chance. Public health investigations performed not by myself found no environmental cause leaving only an occupational cause as a possibility. Hence the research since 2006. To be fair I was only responding initially to the comments made against me by Susan Mills, not the whole. Susan has been privy to more of the detail of our circumstances, hence her comments, and why some aspects went unexplained. Possibly most people wouldn't know to look into possible exposures sufficiently ( no disrespect to anyone why should they) to be able to say either way. Most people would perhaps be surprised at where exposures and substances can be found.
Susan Mills has not been privy to any of you or your husbands details other than what you have posted here in this group now and in the past.
I think I have met you and your husband once briefly at a support group meeting in the North West quite a few years ago.
I also know and have met another married couple who both have vasculitis, one has WG. They have been married many years and have both been diagnosed while they have been married. The last time I spoke to them, they had no idea why either of them should have Vasculitis.
Just to add there is a theory that there is a genetic predisposition to "some families" to having an autoimmune disease run in the family.
Research is being done at the moment into this theory.
We sadly, know many families where there are members of the same family with an autoimmune disease. We also know of two lots of sisters diagnosed with WG. One was diagnosed at the age of 11 the younger sister at 5. The other sisters were diagnosed in their 40's just a few years apart, one sister lived in Italy. We also know of identical twins, ( actually friends of ours ) born 5 minutes a part, One was diagnosed with WG about 8 years ago the other is monitored and there is no sign of any disease at all. We also know of two generations , where mum has Rheumatoid Arthritis and her two daughters have been diagnosed with WG and Lupus. Another family, where mum has vasculitis, so does her son and her sister has Lupus. Another family where brother has MS and sister has WG, and another family where sister has MS and brother has MS. I could go on.....
We know many many people more diagnosed with Vasculitis, than we do who do not have vasculitis. There are over 1000 members on the VUK mailing list. Other than their names, what type of Vasculitis they have, where they live, and the hospital they attend VUK do not keep or hold any other details. There are also over 100 hospital doctors on the VUK mailing list and other than their names and where they work VUK do not hold anymore details about the doctors either.
Susan
Susan, wrong again. We have never met at any support group I can assure you of that. Your husband and I have exchanged personal emails some years ago other than on here. I have never been allowed to give my full reasons why I and others have come to the conclusions we have, have merely tried to get a message across that might be helpful to some including in previous posts. As I say damned if I do and damned if I don't seems the theme. You speak only of familial cases with genetic or blood connections, none of which I have questioned but am familiar with, not of a husband and wife both with WG specifically. Not sure what point you make by that. I haven't questioned your knowledge on the subject at all, although you did of me then refused to allow me to defend myself. I only asked for fairness in options for a
poll is all. I have also not doubted your loyalty to the Vasculitis world as was implied by another, or your clear adoration and support of your husband which is admirable. The response
has been shameful and so unnecessary.
I only answered to your post about the poll being unfair, as we thought your post was unfair too and we gave the reasons why. When you make a post like you did, in the way you did , you will receive reactive replies and not all replies will agree with you.
The poll was requested by a third party not me or John, but someone, newly diagnosed, who has vasculitis and was 100% sure it was an insect bite, (they were abroad on holiday at the time), was the trigger and were very interested in what others thought.
As we only have 8 options , the most common "reasons" were chosen through looking back on what "most" people had talked about before in this group and the FB groups, being the reason they "thought" was the trigger or "triggers", "Infection" being the top reason. The 8th option was left for those who thought there was another reason not mentioned and to leave a comment.
I have no idea you have written to John in the past at all, John receives at least 4/5 emails a day from people with Vasculitis , he has no time to discuss any of them with me unless it involves looking for a hospital or doctor who can help them when they are struggling to get a proper diagnosis. He also receives on average 2/3 phone calls a day from people needing help and advice. This is why we are so grateful to have extra help now to man the helpline and help with the many emails and phone calls which come in everyday.
I am afraid I am not wrong, I do remember meeting you both, very briefly at a support group meeting in the North West, quite a few years ago, because I was told by another trustee at the meeting as we were leaving that you and your husband both had WG.
I am sorry you feel the way you do and if you want to share the evidence you have found with VUK I am sure the trustees and medical advisors will look at what you have found.
Susan
No I have never ever attended any support group of any kind, either in the North West or otherwise. Clearly you were given the wrong information by whoever told you that. Yes I do still have the emails I referred to. After my experience of how I have been treated, for simply asking for fairness in a simple poll, I wouldn't want to share my very thorough research with you, why would I. It seems it's okay for the 3rd party to request such a thing but not for me. Even though there is a thread where several of us have shared our opinions on asbestos/silica/dust from various exposures as a cause of our Vasculitis, yet that is ignored. I can only wonder why that may be. As I say shameful response
.
I have no idea about you emails to John at all and as far as I know you have never been in contact with any of the admins or volunteers in this HU group to ask for a poll on the subject. I do know you have posted before on the subject and there have been previous debates and discussions in the group about the subject. I am not sure who you have been ignored by previously? We here in the VUK HU group can only debate and discuss the subject, it needs research doctors and scientists to investigate all the evidence for a "cause" or a "common thread" and it could take many years.
There has already been lots of research by eminent Doctors and scientists on the subject of silica, asbestos, dust, etc. And have been strongly linked as a result of that and widely accepted by them and others. Perhaps you haven't conducted research specifically into this
subject, as I have and continue to.
I spend about 10/12 hours a day supporting, listening too and helping newly diagnosed people find appropriate hospital care, also help and support families who are looking for appropriate care for a relative, support bereaved families who have lost someone to vasculitis. All these people have never heard of vasculitis before they contact VUK and are in a state of shock. We post out, information leaflets and booklets to patients and hospitals on a daily basis. I am also trying to get off the ground, with a lovely young girl, who has vasculitis, a support group/weekend for young people, there are hundreds of young people here in the UK, diagnosed with vasculitis who have no chance of meeting/talking to anyone else with vasculitis other than online. Since Patricia died last year I have also been trying to oversee the VUK website with some help from a great guy who lives in our village. John works 10/12 hours a day with the medical profession, supporting research and writing consultation documents to find better kinder treatments and to make it easier for patients to have access to these new treatment and supporting newly diagnosed patients. VUK , also support research with a strong patient focus, eg:- to help save lives and make life better/easier for patients. vasculitis.org.uk/research/... We have to leave the research into what causes Vasculitis to the Research Scientists and Research institutions. where they have the vast budgets needed to support this kind of research. I am sure you could share your research with them.
Susan, no one least of all me has said anything against your role. I have only defended myself when attacked or answered questions when asked them. I do more than my share too. Now after all this you say you must leave research to others. Absolutely fine by me. I doubt they have vast budgets though. It usually all goes on finding improved treatments, there's more money to be made out of those by the drug companies. Finding a cause would only deprive them of their profits.
One of the 5 research studies VUK funded for the start of last year and for this is year is :- Improving early diagnosis of Wegeners Granulomatosis ( GPA ) in primary care. Prof Richard Hubbard and Dr Fiona Pearce; University of Nottingham.
Duration 12 months
6 people have died from WG in the last 16 months, in the UK, due to late recognition and diagnosis, one of the 6 was diagnosed after her death , she was 24 years old. The others were aged between 29 years old and 69 years old.
But that's nothing to do with the subject is it. I've never questioned late diagnosis is a problem, i would be the last to do that, I never mentions it. Is there anything else you would like to accuse me of?
I am not accusing you of anything, just trying to explain what VUK do, how they do it and why they do it. You just seem to have a different view. I think it is time for me to draw a close to this conversation.
I had already sent my final post. I do not want anything to do with an organisation that treats people like this. Just in case you missed it this was my final post .....now, as I said please leave me alone
... '.Myself and my husband both have WG, we sympathise greatly better than most how awful this disease is, the devastation this causes, we suffer daily too, both of us, at times too unwell to look after each other. One Xmas we both flared up and literally could not get to the kitchen even to get a drink at one point. I spend many hours every day without fail, have done since my husband was also diagnosed with WG in 2006 when he nearly died, researching, speaking/writing to doctors, scientists and such like and helping victims of exposures all over the world. Helping them with the devastation this has caused them. Support groups, forums, speaking publicly are not for everyone and everyone's case is different. Despite all our own horrendous difficulties and they have been massively so, I carry on because I hope it will go a little way to preventing others suffering as we have in the future. I know I have helped lots of people. I use my skills, my time for the sake of others to my own detriment without ever complaining. Apparently that's not nice. I haven't shared all our symptoms, all our horrendous problems which compared to the majority of people we have double of to cope with because I wouldn't want to burden anyone with them. That doesn't mean to say we are not suffering. It may please some of you to know that we are. All this because I expressed a concern that something was 'unfair' which it was, and tried to explain why in a very limited format with only a mobile phone. All it needed was for it to be added. This was all so unnecessary. No need to imply I was witch, or not nice just because I used the word unfair, or that I was lying when clearly I was not, accused of saying all kinds of things I clearly had not, had my words twisted.....now that really was unfair and just to really make everyone's day yes it all hurt deeply. So you achieved your goal. Maybe now that you have all got what you want you'll leave me to get on with my own suffering, my research. I wish you all well.
Absolutely, no one should ever underestimate the often catastrophic effects that stress can have on any disease process or indeed on anyone without. Sadly we live in an increasingly stressful world.
On an upbeat note, one of the advantages in conducting such a poll is that it offers a release from the psychological strain in coping with the demerits in having an auto-immune disease. It gets people talking about themselves instead of just bottling it up. Has anyone considered this aspect?
Quite agree, It's nice to talk. Not sure why people can get into a tizzy over a simple poll,
Most of it what wooddustaffected posted was beyond me anyway, and I felt like I was being blinded by science, as probably most of us on this site were ?
or maybe I'm a bit thick, I blame the Pred !!!!!!!!!!!!!
I so agree good to talk rather than take a poll. I tried to explain things simply for all to understand so as not to blind people with science and was accused of not being sufficiently knowledgeable to be allowed to disagree. So applied more science in reply that was wrong too. Unfortunately to prove that particular point involves using the science and peer reviewed publications that show that, that's not my fault, just how it is. Tried or offered to provide proof got accused of being 'selective' in my evidence. Didn't supply any, that was wrong too. Yes good to talk but on here it seems it's only allowed if you agree, if you don't you get pilloried for daring to. Not helpful in my opinion. Am I
Not allowed an opinion on the facts available? Ridiculous it should come to this, is it really necessary to stick the knives in, will put people off contributing in future no doubt. Such a shame. All because I dared to ask for fairness. Really....very sad.
Seems like you need you keep the couldron brewing, sorry Iv'e gone off the boil, I am more concerned with my health, how I got vasulitis is something I can't do much about, whether it was stress, flu jab, shingles, gall stones, diverticula, basal cell carcinoma, kidney disease, and suspected WG YES I have all those and a few more , oh and not forgetting my GCA which I have had for 16 year.
I don't think this will put people off contributing in future, we all have our own opinions but go about it in a different way, we learn by one another because we cant all be right.
I'm done,
I am not sure there is much " glory " attached to volunteering with VUK and working 12 hrs a day, 7 days a week on behalf of everyone with Vasculitis, regardless of variant or precipitating factors.
I can hear the passion and frustration in what you have posted. If you don't feel that the current set up in VUK is meeting the needs of patients with Vascilitis then what do you propose to do about it? Its fairly easy to be negative, do you have any positive proposals? In what capacity are you prepared to get involved with VUK? I would be interested to hear your solutions.
Once again being accused of saying something that I very clearly haven't. When did I say that the current set up within VUK is not meeting the needs of patients with Vasculitis? I didn't. I have actually said very positive comments actually. I questioned the fairness of one poll. Not fair to imply that I do not do my bit for Vasculitis or VUK when you have no knowledge of me personally. I more than do my bit in lots of ways, unfair to suggest that I do not.
oh dear, while not wanting to indulge in a petty he said she said debate it would appear you have wilfully misunderstood me ( sound familiar? ).
I wasn't trying to imply anything, I was just very interested to find out what you would do differently and your ideas to help VUK. There are multiple polls posted on this site, far be it from me to suggest how you conduct yourself but wouldn't a simple
" was there any specific reason as to why you didn't make exposure to X a question as I have research to show that it may be significant? ".
Now I will get back to my VUK volunteering and leave you in peace to do your " bit " for VUK as well. 😇
Already had that conversation before the poll was posted. No I did not misunderstand, merely asked you where I had stated what you were accusing me of, as I had not. The fact that you couldn't respond speaks volumes. Fine by me you stick to your volunteering.
Aww thank you, I will.
As others have said the poll asked what we THINK caused our vasculitis. And you could have voted for your option, using the other option and explaining in the box, as some have done. Polls on this site are limited in how many options they can show - this is an unfortunate software issue - so the other option is always offered, for people who want to give another answer.
Expecting people to back up what they say with scientific reports in this context is frankly ridiculous.
And yes I found the text too long to read too. I have huge cognitive problems from the brain damage from my cerebral vasculitis. Ploughing through a solid paragraph like that is asking too much of me, and many other patients here. This is despite me having a PhD.
For the record my answer was emotional stress, after living through a hellish year of family/divorce breakdown (parents), then suddenly falling ill out of the blue. At just 22.
Once again it was not I that expected anything be backed up in this instance, it was others who suggested I was wrong to have not done so. When I tried to offer a little that was wrong too. I was merely pointing out that I could have. I can not be held to blame surely for the limited format or that it was a block of text or that it was only in reply to the very specific statements made. I am using a basic mobile phone, a struggle in itself. I simply could not help that situation & of course do sympathise with your problems, as I do with anyone's, but I also have raised cranial pressure and CSF leaks from the brain, amongst others but it doesn't affect me in the way yours does with you. Interesting to hear about though. We all have no choice but to get on with it, no matter how it affects us but our unique circumstance's led me up a different path as a result. To find a cause would lead to prevention in the future, which is always so much better than a cure in the long term, and I chose to help with that particular aspect. It was the subject of my thesis for my Post Graduate Diploma MSc at University too.
It is a highly complex subject. However, what is the problem with the poll?
If you care to understand the complexity, see the following video: this does raise environmental factors. It seems to me that you, wooddustaffected, might have issues with these named doctors who did not support the sufferers with silica dust, nothing to do with the poll? If so, why wouldn't you get in touch with these doctors instead?
As far as I am aware (someone else already mentioned), silica is only one of the triggers which are associated the disease, there are other triggers. Different people had different triggers. Hope that someone will enjoy this video 
youtube.com/watch?v=_Gcp6YL...
I do wish people would read all the posts before passing comments. I have already said myself it one trigger and that there are others. I don't have any issues with any Doctors, none whatsoever, quite the contrary. Not nice to imply anything other. It doesn't help to confuse the issue either.
OK, have a look at the video. You might be pleased to see that your SILICA is mentioned 
If you looked at your original post, you called the poll "unfair", well, that's not nice. Maybe, you wrote it when you are not well. We tend to get grouchy when we are not well. Best not to post when you are feeling rubbish. I learned that myself Without VUK, we are nothing.
Sorry I didn't read everything that was posted, but my husband has cerebral vasculitis, and he for one was under enormous amounts of stress for approximately 5 years prior to him becoming ill. The day he was ill was the day he encountered two bleeds in the brain, seizures and lying in a coma for a month. He was a very lucky man to have recovered and continues to recover at the age of 53 and still not working. So I for one would welcome any poll, research etc., to find out why, how can it be managed/cured, and is this hereditary. Let the poll go ahead, I am sure any collated information would be helpful and useful.
Myself and my husband both have WG, we sympathise greatly better than most how awful this disease is, the devastation this causes, we suffer daily too, both of us, at times too unwell to look after each other. One Xmas we both flared up and literally could not get to the kitchen even to get a drink at one point. I spend many hours every day without fail, have done since my husband was also diagnosed with WG in 2006 when he nearly died, researching, speaking/writing to doctors, scientists and such like and helping victims of exposures all over the world. Helping them with the devastation this has caused them. Support groups, forums, speaking publicly are not for everyone and everyone's case is different. Despite all our own horrendous difficulties and they have been massively so, I carry on because I hope it will go a little way to preventing others suffering as we have in the future. I know I have helped lots of people. I use my skills, my time for the sake of others to my own detriment without ever complaining. Apparently that's not nice. I haven't shared all our symptoms, all our horrendous problems which compared to the majority of people we have double of to cope with because I wouldn't want to burden anyone with them. That doesn't mean to say we are not suffering. It may please some of you to know that we are. All this because I expressed a concern that something was 'unfair' which it was, and tried to explain why in a very limited format with only a mobile phone. All it needed was for it to be added. This was all so unnecessary. No need to imply I was witch, or not nice just because I used the word unfair, or that I was lying when clearly I was not, accused of saying all kinds of things I clearly had not, had my words twisted.....now that really was unfair and just to really make everyone's day yes it all hurt deeply. So you achieved your goal. Maybe now that you have all got what you want you'll leave me to get on with my own suffering, my research. I wish you all well.
I've just read the entire thread and had no trouble understanding or following any of it, despite not even having a degree!! I've been exposed to a lot of the substances mentioned over the last 50 years but don't have WG, nor can I pinpoint any particular trigger for my immune system going bonkers as there are many suspects.
Antibiotics are particularly interesting. Could it be that antibiotics either save people who would otherwise have died .. who then develop other conditions because of some inherent weakness? Or that antibiotics are given to people who have strong immune systems that would have beaten the disease for which they were prescribed and the immune system throws a wobbler because it hasn't been allowed to do it's normal job? Nobody's going to risk researching that possibility, of course - there would be too many dead patients 
Good for you understanding all "the tread" I feel even thicker now ha ha, at least I admit it.
You said that you can't pinpoint a particular trigger for your immune system
going bonkers, I don't think many of us really know. The poll just asked "What do you THINK" caused it.
Antibiotics are a bit like Pred they both cause side effects, and also save lives. I wonder if I wasn't prescribed Pred, would my immune system eventually do it's normal job ? too late late now Iv'e been taking them for 16 years.
In my case there are a lot of candidates for the trigger so it would take an essay rather than ticking a box or even ticking 'other' then explaining. I do wonder what the answers to these polls are used for, though.
I was very interested in seeing the results anyway, and the Admin/volunteers on this site are only doing what's asked of them re the poll.
What a palava over a simple poll, I'm amazed, I think it's time we put this one to bed, don't you ?
The person who asked for the poll maybe is convinced it is "x" but her doctors have told her it can't be - that happens quite a bit.
I think my point made what it feels like a few years ago that knowing what patients THINK caused it helps those of us involved with support deal with their expectations (or otherwise) applies. When you find someone who campaigns for the abolition of "x" because they are convinced it was the cause of "their" illness there has to be some way of explaining that no, while it may have been the final straw for them - it doesn't apply for thousands of others. And that is where the woods disappeared because of the trees in this thread I think.
The word 'research' really worries me nowadays. I spent the last few years of my teaching career trying to ensure that my pupils didn't believe everything that they read on the Internet, and that they used other sources to check or refute their ideas. I know this is increasingly difficult to do, and when I got ill I did try to stay away from the whackier health fringe that is out there. As someone with two science degrees, I would still rather use printed media, or material that I know has been peer-reviewed, though this isn't easy if you are fatigued and/or housebound. I'm not questioning anyone in particular, just pointing out that this a constant consideration now. Getting complex material from a screen is also much harder than using paper, and is probably why some people on this post say they feel 'thick'. I'm sure they aren't, just using the wrong medium for this sort of information!
There was a lecture at a support group meeting a couple of years ago that certainly listed silica as one of several possible triggers for Vasculitis, and said that there was ongoing research. But it definitely was not given as a cause...just one of several factors that could be harmful to someone whose genetic makeup made them susceptible to autoimmune disease.
I have worked my way through most of this 'discussion'. As a Vasculitis sufferer of 8 years standing [sitting really as mononeuritis multiplex has made hands and feet useless owing to nursing and diagnostic incompetence] I thought it worthwhile to do so.
I spent all my 47 years working life in Construction [NOT Building houses] and asbestos plus wood-dust in joinery shops was a fact of life. The MM hit me ONE year after retirement [good luck eh?] so, given that the latter years were spent well away from carcinogens, is this delayed action?
I have long held the opinion that the average questionaire is bound to be biased, particularly a Social Services one concerning possible benefits, none of which I get as I was 66 when IT happened.
The bias is NOT always intended. It just happens [except of course SocServ where it is always deliberate].
Just what practical research is being done concerning Vasculitis, and why does the medical 'profession' seem to be ignorant even of its existence?
Quite a lot of research going on, and even in my remote part of Scotland I've come across a good few medics clued up on vasculitis, even my rare variety!
Hi Orsen, Yes you're right. There has been lots of peer reviewed research into crystalline silica & autoimmune disease published over years too. I thought this one below may be of interest to you. Dr Richard Watts was appointed as Medical Advisor to Vasculitis UK. He has published others & also one based on a cluster of 8 farmworkers (different farms) all with WG. I have corresponded with him a few times but also met him in 2008 and just to be clear (as I always do ) I asked him what had caused the WG in the cluster of 8 farmworkers and he said emphatically 'it was the crystalline silica in the grain dust'. He was very sure. In fact it was Dr Watts who encouraged me to research what the cause for our WG was for us, to research further into an occupational cause, because with odds of us both having WG is 100 million to 1 apparently, so not by chance....… Here’s the one mentioned earlier.......
2015. Dr Richard Watts et al .....'..Dust and fumes exposure......Exposure to any dusts as well as specific exposure to grain or silica dust was associated with GPA (Table 4). ...........Exposure to chemical sprays, glue/paint fumes and petrol/diesel fumes was based on hobbies identified by the participants. GPA was associated with exposure to chemical sprays, petrol and diesel.....We have also shown that exposure to dusts and silica may be associated with an increased risk of GPA........ Silica exposure has been associated with a number of auto-immune diseases including GPA [14], rheumatoid arthritis [15] and systemic lupus erythematosus [16]. .........The mechanisms whereby silica results in auto-immunity are not fully understood but are thought to include its potential action as a non-specific immune adjuvant for activation of responder T cells and regulatory T cells (Tregs) [17]........... We have shown a relationship between the intensity of exposure and disease....... Further clarification of the timing of exposure as well as the threshold of intensity or duration of exposure for the risk of disease to increase will require long-term prospective studies....'
ncbi.nlm.nih.gov/pmc/articl...
I wonder if anyone's researched the workers from the silica mine in morvern (Scotland)? Or indeed the population of lochaline on its doorstep?
Can't say the same for West Gloucestershire. My practice doctor had 'never heard of it' six years ago. He has now.
And the 'specialists` in Neurology, when they appeared after two weeks in AAU had to contact another 'specialist' in Bristol to discover they had to put me on a Cyclophosphomide [aka mustard gas] drip to stop it killing me.
Not a healthy experience then. I notice the two principle protagonists in this discussion don't know when to shut up = like whose stick is bigger.
If you mean me, wildlife, I was actually finding the discussion on silica very interesting. Sorry if it's not your thing but you can always 'scroll on by'.
Wildlife....No has to read it if they don't want to 😊 .
same goes for opinion polls, you don't have to fill them in if you don't agree with them.
I didn't. Didn't see the point .
sorry about that
Hi Orsen, Here is a couple (of many) that may interest you regarding silica. Please bear with me I may have to post separately..NB '..Silica is known as one of the strongest environmental substances that cause autoimmunity dysfunction.
"..Immunological effects of silica and asbestos by Professor Otsuki 2007
“………Silica is known as one of the strongest environmental substances that cause autoimmunity dysfunction. Silicosis patients often develop immunological complications such as rheumatic arthritis (known as Caplan syndrome, systemic sclerosis (SSc), and systemic lupus erythematoses (SLE). The effects of silica on autoimmunity have also been recognized following the discovery that patients who receive plastic surgery with implants containing silicone ([SiO2-O-]n) show frequent complications involving autoimmune disorders. These findings clearly indicate that crystalline silica causes dysregulation and/or disturbance of the human immune system, particularly autoimmunity.
On the other hand, asbestos causes malignant tumors such as lung cancer and malignant mesothelioma. At the view point of immunology, there may be the decline of tumor immunity.
Our research focus is to seek the immunological effects of silica/asbestos and to realize the mechanisms of these effects involved in the development of dysautoimmunity and impaired tumor immunity….....…
Hi Orsen, Here's the 2nd one I promised.....
August 2014....…A panel of eminent scientists met to discuss the possible environmental causes of autoimmune disease and decided this for silica (see extract/link below)…….. whilst the mechanism may not be fully understood as yet, as is very often the case, (like in other cases too… wood dust (soft/hard, wood /wood composite board) for example is classified by the IARC (1995) as a Group 1 carcinogen on the same level as asbestos, based on evidence from research from the 1960’s, but it is well documented that they do not know why) there is deemed sufficient evidence that exposure to crystalline silica induces autoimmune disease in some. As with any disease and its cause, should there be any, it is recommended that further research is undertaken, which is normally the case & should always be welcomed. Over the years I have spoken to 3 of the authors directly re their own specific research prior to this...
"..Expert Panel Workshop Consensus Statement on the Role of the Environment in the Development of Autoimmune Disease. Aug. 2014....'
Extract…'.......…2.3.1. Chemical Factors The panel was confident that crystalline silica exposure contributes to development of several systemic autoimmune diseases, including RA, SSc, SLE, and anti-neutrophil-cytoplasmic antibody (ANCA)-associated vasculitis [55,56]. Evidence also supports an association of solvent exposure (in general) and development of SSc [57]…......…
In several instances, animal models of environmentally induced autoimmune need to be promoted when there are good epidemiological data supporting an association. A prime example is that of silica and silicate exposures, which have been associated with multiple autoimmune diseases in humans. These findings are corroborated by relatively few studies in animal models, and so more work is recommended, particularly for the inhalation route of exposure.....’
Hi Orsen, would highly recommend a film 'Merchants of Doubt' by Robert Kenner (available free online or DVD) not about silica per se, more asbestos and smoking, but brilliant, answers questions as why certain organisations & those leading them (or funding them) scew or hide the truth and how those who speak out about the truth are disparaged, as happens too often! There's a book too 'Doubt is Their Product'.... Enjoy should you choose to! Will make people think if nothing else. 😉
Wow! Having PAINSTAKINGLY read through all of the discussion I am going to reward myself with a strong cup of coffee. Looking at it positively I have gained a greater awareness of the potential hazards of dust and silica particulates in particular and Iam grateful for that. However probably not the best way of going about it. As for the VUK Polls, keep them coming, I've always found them interesting. It's not something to be used as part of a research study or valid statistical evidence but I do believe helps many members of this forum. If the poll had been able to have an additional specific question on dust, I'm not sure that it would have made much difference to the outcome. Whilst I not wanting to fuel debate I would just like to voice my support for the polls, including the one under discussion.
I can well understand wooddustaffected's sense of frustration coming through in her posts here. Being really ill with WG or CSS etc. does make the best of us want to lash out verbally and sometimes we are seen to say the 'wrong things'.
Maybe it's important, however, to choose words carefully so as not to hurt people who are, after all, only trying to help. Most of the responses here show considerable patience and sympathy. So let's try to keep down the anger / sarcasm as it helps no-one.
Me, I chose to use the 'other' option in the survey I recall as there wasn't anything to click on for 'laser printer / photocopier toner and fungal particle exposure'. However, this doesn't mean to me that the survey is unfair.
But perhaps, considering the common factor here is 'were small particles inhaled that elicit a strong immune response', then if the survey had that option to click on, it would have been great for me and wooddustaffacted... BUT then the next problem would be, and would have quite fairly drawn criticism, would that have demanded too much prior research and scientific nous of the survey's respondents? and thus in itself have been 'unfair'on Jo / Joe average?...
bottom line - you can't win!
Incidentally, office exposures -as well as 'industry'- are a good source of dodgy nanoparticles for us to inhale. the 'Finnish study' good re this. - worth a read. Also German support group 'Krank durch Toner' (sick from toner) has an interesting take and some good refs to read. Farmworkers breathe lots of mould from handling grain, hay, silage etc. as well as silica from seed husk. It's all so
...complicated
Did you know what the 'half life' of a toner particle is when it's got into your bloodstream? Did you know it can pass into your CNS via your olfactory bulb? Maybe we're all sick from modern life!
Love to all
Rob.
Do you know? I'd have thought the half life of such particles might be VERY VERY long. They certainly get stuck in the deeper recesses of the lungs.
In fact, it scares me to death when I see all these "silver nanoparticle products" for cleaning. Will silver nanoparticles be the next plastic contamination of the world's water?
There was a programme on German TV last night telling you to avoid lemon-flavoured cleaners - because of the damage some of the flavourings can do to you. I've had an aversion to lemon-smells other than a lemon for years - my husband though it was totally irrational but last night he agreed maybe I had a point.
And to pick up on another of your points - what exactly was "farmer's lung" do you think? They won't have done imaging and pms to find out in the old days.
There was also something on the BBC news site about scented candles! As for farmer's lung, I'm sure Joe Grundy could give you chapter and verse!
Hi PMRpro, A friend of mine, a Senior Research Fellow from a University, actually invented the microscopy techniques still used today by scientists all over the world to identify nano particles using specialist microscopy. So I speak with a little knowledge of the subject. You are right to be so concerned, as substances/particulates such as these do, as you say, get stuck in the lungs and can continue to do untold physical damage long after exposure ends, as it does with many diseases caused by exposures in this way such as silicosis caused by inhaling crystalline silica.
But nanoparticles, due to their small size which means a greater surface area making them more toxic than a same amount of larger sized particles, are far worse and due to their nano (smaller) size can, after inhalation, pass through the lungs into the bloodstream where their toxicity or carcinogenicity can cause harm in other areas/parts of the body, therefore adding to the risks. Hence why they often cause systemic disease rather than organ specific disease. It's a complex subject and as is always the case insufficient rigorous medical research was done to find out more about the harm they cause before putting them into thousands of products and have been for many years now. The industries, such as in Paints for example, have been using them not fully knowing the harm they cause for at least 10 years. However, they do have a beneficial use too, especially in medicine, but we should still evoke the 'precautionary principle' as it is known, as we should do, which would prevent victims, but would still allow for them to be used where there are benefits.
It's safe to say (even for me 😉) that inhaling particulates of any kind, not just those that are known to cause cancers, respiratory disease, autoimmune diseases, etc., depending on type, are harmful to health.
Crystalline silica and asbestos do the harm that they do because of their structure which is hard, begged, with sharp edges, which cuts into tissue causing it to become embedded, meaning also that they cannot simply be coughed up. Both are very similar in properties which is possibly why they are both now linked to causing certain autoimmune diseases. Our immune system cannot destroy them as it would normally (trying to keep it as non science as I can) because they are too hard, too strong, as the 'macrophages', part of our immune system, that engulf the harmful/foreign particles cannot destroy them with the enzymes/secretions they emit to do so. They emit more and more until they become overwhelmed and are themselves destroyed instead of the particle, which stays in your body then forever usually. The more overwhelmed our immune system is by such exposures, the more likely autoimmune processes are to kick in which leads on to various different autoimmune diseases dependent on other things too, as besides type of contaminant, size, length/intensity of exposure and of course our own genetics all are thought to play a part. Hence why there will be not just one cause/trigger for autoimmune disease, similarly as it is with causes/triggers for cancers. Crystalline silica that is freshly fractured is more toxic because it is much sharper than aged silica which tends to be more rounded like that on the beach. It's the sharpness, the cutting that causes inflammation around the wound, part of the process of our immune system but too much inflammation is a bad thing, as it causes cell death, etc. Kept it as simple, very very basic, as short as I could. Tried not to leave important stuff out so apologies if I have and to those who understand the science. Sadly anything complex is lengthy to explain but no one has to read it if they don't want to.
To give an analogy, a pearl in an oyster. They form for a reason. An oyster sucks in water to get nutrients in the same way we inhale to get oxygen into our lungs. Within that is particles of grit/sand (dare I say it aka silica) the particles of sand/grit are mostly expelled by the oysters filtering process, like with our lungs. However, some smaller particles do get stuck, embedded in the oyster because they are small but they're still sharp. This cuts into, irritates or stimulates its immune system, a process, to help to protect it from the sharpness of the sand, to protect it from harm. It begins to secrete a substance that forms around the sand particle that hardens (a little similar to the scarring process in our lungs such as when nodules are formed after particles that get stuck there, it's the body trying to protect itself) covers it in layers over time, until you end up with a very smooth less
harmful object, a pearl, or in the lung a smooth nodule or area of scar tissue, not quite so prized, as in the lungs it affects lung function!! The rest is history.
With autoimmune disease such as WG(GPA) possibly this is why for sufferers primarily it affects their upper and lower respiratory tract (as particles are inhaled) and their kidneys too in some. Kidneys filter the blood that smaller particles get into then they too can get embedded in the tissue to cause harm there too.
'Farmers lung' , 'woodcutters lung, etc., there were lots of common names given to those in certain trades years ago, especially the dusty ones, such as these , before knowledge grew sufficiently re occupational disease and its many processes/diseases. Even today they do, there is such a thing as 'Popcorn lung'. Those working in factories making the popcorn that is microwavable in bags that contains all kinds of chemicals but particularly the one that replicates the smell of butter I think, 'Diacetyl' , has been linked to causing this disease in those workers exposed to it. It causes a form of irreversible lung disease that causes scarring which in turn limits lung function. Several have sued successfully in the US.
With nano particles, as I tried to explain before, they are too small to
be seen with the naked eye, but you can often smell something or taste it, even if you can't see it, it's there. Lots of research is being done now into the harm they cause, but for some too little too late. Should have been done before they unleashed nano particles of anything into the environment and the air we all breathe. Seems as a society we never learn. We haven't learnt from the terrible harm caused by asbestos and smoking and air pollution, where many tried to voice concerns, trying desperately to alert the public to the harm/deaths it was causing....instead of listening to the messenger they shot him or her instead, choosing to brand them as mad, troublemakers, idiots, and such like.... look where that got us!
Mmmmmm.... 😉😉😉😉
PS... did you know they used to add crystalline silica (and asbestos into filters) in cigarette papers, so that the paper/cigarette took longer to burn.
With all due respect clearly I have not 'lashed out' at anyone verbally or otherwise. It’s not in my nature to do that. To use the term 'lashed out' implies that I was abusive, vindictive, nasty, etc. , when I was not. I never criticised the outstanding efforts of John and Susan Mills. I used the word 'admirable’, how was that bad? Many of us 'do our bit’ for all sufferers of autoimmune disease, and more besides, but just because we do it in a very different way to others doesn't make it less or more admirable. If all my posts were actually read properly then anyone can clearly see that I have only voiced a concern on one relatively small but important aspect, in a reasonable polite manner. Despite some terrible accusations that were completely untrue, never at any point was I abusive, nor did I reply in a nasty manner as some did, I did not resort to unnecessary sarcasm either as some did. I merely tried to defend myself when I was wrongly
accused of saying things I clearly had not said as was evident, and tried to justify those concerns I raised when forced to do so in what was not a suitable arena to do so. Who wouldn't defend themselves under those circumstances? When I simply asked when I had said the things I was accused of there was no response, that's because I had never said them, hadn't even implied it. That should surely speak volumes. However, what I have said I stand by (which I have already said prior to the 'poll' with absolutely no objections raised then ) and as I've said can back up what I say.
It's clear that some people, even by their own admission, did not read all posts before criticising or accusing, their choice to do that by the way (despite the sarcastic objections to the length it was their choice to read it, they didn't have to and actually it was specifically in reply to Susan's factually incorrect comments, so really no need for anyone else to interfere), which meant that they then took aspects out of context, which, intended or not, did not help anyone, only served to make matters worse. It sadly often happens on forums such as this, which is why I'm not a fan of them. If the 'polls’ are not to be taken seriously, then why do them? Many take these results, especially when undertaken by an organisation such as this, no matter how lightly intended, as read, and quote them often again out of context if they think they prove a particular point they are trying to make, including the media, without first considering the circumstances under which they were undertaken or why. This can sometimes be to our detriment as sufferers of these terrible diseases and can at times be used against us. I think the power of these 'polls' is hugely under estimated.
The subject raised clearly deserves consideration at least. This is not the arena to do it which is what I did say from the start. However, when questioned and accused, in the manner I was, how do you prove aspects to others when they ask for evidence or make accusations wrongly and then who state that the limited evidence allowed to provide, is then said to be 'selective' when the arena is so very limited. When 'selected' reading of posts takes place, aspects are then taken out of context by others . I tried desperately to put them back in context to provide clarity from the confusion it caused.
I made very positive statements, often in agreement with others, showing a great deal of interest, sympathy and concern for others, their opinions, their circumstances, where none was shown to me. Interestingly no comment on those. As I say, damned if I do and damned if I don't.
There is copious amounts of peer reviewed research (yes to be clear I do understand what that means) published by many eminent Doctors and Scientists from all over the world, and other overwhelming evidence on the subject of crystalline silica being one of the causes/triggers for autoimmune diseases, including vasculitis, which includes that undertaken by your own patrons, who you must surely trust. I am not saying that anyone takes my word for it, just that they check it out before refuting it. I have made huge efforts to research this aspect due to our very unique circumstances, more than most would perhaps due to my background, in the hope that in the future it helps others, prevents others from suffering in the future as we all have, and have undertaken it as thoroughly as I could do. That's why I spend all my time helping others.
It is vital that we continue to look for a cause/s/trigger/s for autoimmune disease, no matter what they may be, so that we can try and prevent others suffering from it in future, as much as it is that we look for cures and/or new treatments for those sadly suffering already. Unfortunately (not saying this applies to Vasculitis UK) , (for those that may not understand or have thought about it, no disrespect to anyone), Drug companies are hugely wealthy and very controlling, do not make money/profits out of finding a cause/trigger because that results in healthy people who don't require the drugs/treatments they produce, and they are after all business to make money, to keep shareholders happy. So that's why so little research is done into finding a cause/trigger compared to other forms of research. Researchers wanting to pursue this angle are often prevented from doing so due to lack of funds for that reason, that's why it's vital, perhaps more so for that reason, that influential patient led organisations and its supporters, support this type of research too, but more importantly to actively and vigorously make more of a point of encouraging more research into finding the causes/triggers. For the meantime others have to try and fill the gaps in other ways. As Professor Noel Rose Chairman Emeritus of AARDA states'…In my opinion, the only way we're going to develop really effective treatments will be to treat the cause of the disease, not the symptoms. The symptoms are late; the symptoms are at the end of the train of events. We want to get on the train at the very beginning...' but we have to find them first.
I am as much entitled to express, share my concerns or findings with anyone (their choice if they read it of course, they don't have to) as much as anyone else is free to do, that has interests in other possible causes/triggers. I was asked to justify mine, I simply tried to do as was asked of me. I was attacked, wrongly accused and outnumbered, after doing as asked, so defended myself, who wouldn't. Always difficult to express concerns in a limited arena, or to defend oneself when wrongly accused especially when you are one person being picked on by so many, wrong for so many reasons, no matter why they felt the need to do what they did, it was wrong.
Now please let's move forward. This is not helpful. Let this be an end to it. That's not to say the subject matter should not be discussed, as despite some saying this was not the arena to do it, and have disparaged me for doing so, some seem to think it is and want to do that. That's good! Not all bad then! It is more complex than most would think though.
Hi wooddustaffected, I think you have answered the question of the poll quite succinctly in one of your replies, I quote, "After my experience of how I have been treated, for simply asking for fairness in a simple poll, I wouldn't want to share my very thorough research with you, why would I." i.e., just a 'simple' Poll for those who generally have no concept of the innumerable possibilities and causes of Vasculitis. I believe also that if you hadn't thrown your dummy out of the pram in the above quote, your 'constructive' input to any forum would be most welcome.
Hi Derek,
You say (not me to be clear) and I quote...' just a 'simple' Poll for those who generally have no concept of the innumerable possibilities and causes of Vasculitis. ...' Firstly, I'm pleased that we agree that there are. But surely that proves my point exactly not yours or theirs? So why ask members in the first place, who you say 'generally have no concept' of what they are being asked about, if they really then would not be able to answer it with any knowledge as to why? And if there are 'innumerable possibilities and causes of Vasculitis' as you say, then surely a simple poll that is very limited as to what the causes/triggers may be is not going to be a true reflection of anything? What you don't seem to be aware of are the concerns I raised before the poll was posted on this very subject. Why miss out from that poll the biggest contenders, contenders that eminent scientists agree on?
Surely, rather than waste members time in that way completing what clearly is a useless poll, on this occasion, if what you say is true, by asking members questions you say they can't answer with any credibility, surely it is kinder to spend time to help them to understand, to raise awareness, to educate IF necessary, and to alert people, so that they can make an informed decision on this for themselves, rather than to treat them all like they're either stupid or unknowledgeable, as if not worthy, and to try and make up their minds for them. Misguided members they may be at the moment, but definitely not stupid or unknowledgeable, just unaware perhaps. They deserve better consideration than that in my opinion.
I would rather be guilty of what you accuse me of than be guilty of being a group of people who turned on one person, a sufferer like themselves, like a hungry pack of misguided wolves. As I said, shameful.
Just serves to make me wonder why they would wish to deny this as vehemently as they do, especially when there is so much evidence to prove them wrong. Where's their evidence that I am wrong? Been no evidence of that in all of this.
As for my comment on not wishing now to submit anything to leaders of this group, who do they think they are? I don't have to justify my research or my reasons for doing it to them. I've already made it perfectly clear as to why and what the focus of it is. They've proven by their appalling and unnecessary behaviour, in this thread and others, that they would not be capable of looking at anything objectively. All I am guilty of is to have proven that they are clearly reliant on out-dated information and are simply trying to justify their action of wrongly, in my opinion, continuing to feed it to their members. I would rather spend my valuable time more productively, than waste my time on a useless exercise.
Better surely to have thrown the dummy out of the pram to prove a point, if that was how you viewed it, rather than be guilty of throwing the baby out with the bath water.
Again, if anyone doesn't like it, they don't have to read it, their choice if they do or not.
If you're interested in the detail re inhaled particles and their toxicity and half-life in the lungs, this book is probably relevant as it draws some of the evidence together and shows how these things ramp up the immune system in unexpected ways:
"Carcinogenicity of Inorganic Substances: Risks From Occupational Exposure",
edited by J H Duffus.
It contains many references for further reading. Shows that what you inhale can stay around for a long time, depending on the substance and its particle size; inhaling one thing can lead to reduced clearance from the lungs for a year or more. Silica / quartz, titanium dioxide and carbon nanoparticles are some of the worst. Nice to know that titanium dioxide nanoparticles are used in sun cream...
Enjoy a bit of light reading. If you find something to print off, don't use a laser printer!
best wishes to all
Rob.
PS farmer's lung: extrinsic allergic alveolitis.
Thanks. Very much appreciated.
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