I thought I'd give this link in the hope it might make people think about what they read online
Not all that is published is worth reading - PMRGCAuk
Not all that is published is worth reading
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DorsetLadyPMRGCAuk volunteer
Very interesting!
There does seem to be a proliferation of scientific journals these days so we must be careful.
I was amazed at the mention of paying for research to be published. In my day ( granted it was the dark ages ) a paper was submitted, peer reviewed and either accepted or rejected. Of course with the internet anyone can publish anything, which can be picked up and spread by anyone else.
Then do we believe all we read in newspapers these days? How many times have we discussed that here?
This week there has been a discussion here about not trusting people.
It's the new skill of today - choosing what to believe.
Exactly - it seems to be a problem with inability to read critically. Which I find very disappointing in the science field. But we (OH and I) see it an awful lot these days. Together with even downright deception in getting something published in the Proceedings of a longstanding internationally renowned meeting.
OH gets emails almost daily inviting him to submit his esteemed work for publication. On payment of a fee of course. But it seems that or some of them they are so desperate to get content they will let it through at no charge.
This
whyevolutionistrue.wordpres...
was done by a Guardian article last week but I can't find the original Guardian article despite having read it at the time. He claimed penury - and eventually was "allowed" to have it published...
As for newspapers, only believe the crossword.....I'm getting like my cynical husband😕
in reply to Longtimer
You can't always believe the crossword either, I'm sure they make up some of the words.
in reply to scats
It is the new sought after skill.... choosing what to believe, and being right more times than not! If you can do that... you're golden!
scats in reply to
I don't think anyone can do it. It's disappointing how many clever people choose to use their abilities to deceive .
Or it is just utterly crap research! Badly set up, using statistics to prove anything without knowing what the stats means (and no, I don't know any more either), drawing conclusions that aren't justified...
When the majority of people have a degree I feel that its worth is reduced compared to what it used to be. I don't know, but can only speculate that more will want to do research, some will inevitably not be to the necessary standard. Compromises will be made... and statistics can be used to prove anything, as in your example above ( which caused much merriment here!).
This however does not justify it being published, and one would assume that medecine would be a special case. Then as we all know money equals power and so many wealthy companies will pay for the results they want.
How much cudos is gained by having published an academic paper, how many employers will check to see if you paid to publish it?
Everyone has an agenda these days and we must be looking for it.
Hope this makes sense and isn't too rambling, I've been up all night again!
Won't let me edit for some reason but my son has just come in and reminded me he'd been a fan of Ben Goodacre for years and has dozens of examples of published 'research'. His favourites are mostly based on the science of Startrek.
Oh in the USA there is a lot of kudos - if you want to get grant money you have to be seen to be publishing - as the proof you have been working. We see it a lot in our annual pilgrimage to an international meeting. There is reinvention of the wheel - some person presented a paper a few years ago with a mathematical model for measuring something that my husband had published multiple papers on having actually measured the thing some 15 years before - she had never read them, it was his first question! Or they turn up with something done on 2 patients and think that is enough to do stats and publish! We are fairly harsh on that sort of thing but OH is the scientific editor. Or - a new concept - is to submit an abstract for a poster that refers to the core subject of the meeting (oxygen transport) but when the paper is submitted it is about a totally different thing, oxygen doesn't get a mention and you didn't present your poster anyway. And you have about 15 co-authors - and they may change during the approval process...
Sometimes you couldn't make it up!
This is close to my heart. As part of my Masters Degree studies many years ago I wrote a paper on Statistical Methodologies. 50% of it was accurate, the other two-thirds was complete cr*p. 
I might have guessed!
Reminds me of the old saying: 'There are 3 kinds of Lies. Lies, Damned Lies - and Statistics' (Mark Twain / Benjamin Disraeli).
My son, the true geek in the family, says take a look at XKCD.com
Very disappointing. Seriously? Most of the 175,000 scientific articles produced by five of the largest publishers’ skip the traditional checks and balances of scientific publishing. WTF? How do we know who and what to believe?
That's my point. It is relatively easy to look up these journals - and if they want money, steer a very wide berth! Otherwise...
in reply to PMRpro
Hmmm? It might be easy, but I'm not really sure where I'd start? So are these 4 of the 5 "predatory open-access publishers," Omics, Turkish World Academy of Science, Engineering and Technology and Waset?
And would it be obvious to me (when I was reading a scientific article) that it was published by one of these predatory publishers or will that detail be buried deep and I'll have to dig for it?
Usually you can identify what journal it was published in quite easily - there is always a reference naming the journal/website.
But actually, even some of the apparently "good" journals where there is "peer review" may be a bit dodgy - the Editor can always send his favoured submissions to a friend of a friend. Hence my frequent scepticism.
I'm sure you'd agree PMRpro that the essential problem is that 'Science' clearly (like any other social institution) has huge problems living up to its own tenets. As we all know when humans are involved things can become very 'un-scientific' very fast as unsurprisingly $$$ are usually involved.
Despite this though I do feel annoyed (even as a sometimes malleable 'soft-scientist') - when people don't do the bloody hard work which is necessary to write a decent analysis about almost anything.
Rimmy
Fake news hits the scientific community...
Selective reporting even in science has been rife for years - Ancel Keys flawed research on the role of fat in heart disease was a prime example. He ignored countries that didn't fit his theory (including northern France and Germany who had equally low rates of heart disease but ate large amounts of animal fats) - a single fact that has a big effect. And carried out the study during Lent in a Roman Catholic population - next to no meat eaten then even today in some places.
I've actually met Prof Milton Wainwright a gathering.................giving his backing to a locally produced honey confirming the producer's belief that it is almost identical to Manuka honey, I myself cannot comment on this being neither a scientist nor a honey expert..........and then proceeded to talk about all life coming from outerspace kind of dropping down on dust particles........it was all rather strange.
There's a pretty serious theory that life was first on Mars and arrived on Earth via meteorites. That's one reason the scientists are so keen to find life on Mars, in case it contributes to our understanding of life on Earth. Another theory suggests that viruses arrive from outer space although I don't know if there is any evidence at all. It's a shooting gallery out there!🌠☄🌀
ThanKs Heron, as I said I'm no scientist,, electricity is magic as far as I'm concerned and as for TV.............
Thankfully we have you PMRPro to keep us straight. There seems to be less and less to trust these days. Surely the publishers and authors of fake scientific papers could be sued? Fortunately I find them difficult to understand anyway.
Often doesn't make much difference - Andrew Wakefield was found guilty of misconduct and now has a big following in the US in particular but also worldwide who deny the facts by choosing to only ever speak about comment that fits their agenda.
I did not know it was so widespread. Do you know if this is a real study? How can I access studies for Phases 1-4 for Tocilizumab regarding Giant Cell Arthritis? Thanks.
Trial of Tocilizumab in Giant-Cell Arteritis
John H. Stone, M.D., M.P.H., Katie Tuckwell, Ph.D..et al.
Link to Study:
nejm.org/doi/full/10.1056/N...
Looking at the dates I assume this must be using results from the Giacta trial using tocilizumab to get a paper with a different slant - probably something not actually included in the clinical trial report. I might be totally wrong though.
The only thing I will say is that the work was "supported by Hofmann la Roche" - and it is well known that there may be bias in drawing conclusions, It has been studied:
"Our review indicates that industry funding may not be a major threat to bias in the reporting of the raw adverse effects data. However, we are concerned about potential bias in the interpretation and conclusions of industry-funded authors and studies."
ncbi.nlm.nih.gov/pmc/articl...
The consensus at present is that tocilizumab is a wonder drug in GCA - but there is already evidence that while it makes the usual bloodmarkers fall and many patients do feel very well on it - the actual disease is still continuing in the background. So is this a false sense of security? Only time will tell I think.
Thank you. That is what I feel. Markers are low, but my disease still seems active. I have been having symptoms of temporal arteritis the last couple of months. Thank you for your reply and giving me so much information.
My doctor said I could not be having symptoms while using Actemra. However, this report did not support his statement. Thanks again.
More “bonkers” than WE are!!!
So true PMRpro. As a writer and self-publisher ('Write Me Funny..etc), I emphatically agree that my stuff is utter drivel and anyone who reads (and believes) it must be one slice short of a loaf.
I`ve been one loaf short of carbs for a long time, your writing certainly give me a lift though...thank you....
Thanks Longtimer - all part of the service 
Interesting!!
PMRproAmbassador
And then, of course, there is THIS aspect of "science"
theguardian.com/business/20...
in reply to PMRpro
Useful all these chems are but always a down side too! Same with meds! No perfection is there!! Way of the world!
Oh dear, it all becomes a little overwhelming!
No wonder our rheumys like to tell us “you can’t believe everything you read on Google “ when we are trying to explain some of the information we read on this forum or elsewhere. It’s a bit of a battle as a layperson against the medics and the “online research” for those of us who take a huge interest in our health and are desperately trying to understand what is happening to us.
So discouraging! (but thanks so much for sharing the article with us PMRpro).
Hello PMRpro.
I am a newcomer to this forum, and to PMR. I was diagnosed about 3 months ago after around a couple of months of what I now understand to be classic symptoms. The rheumy I was sent to was not very forthcoming with information about the condition - but then I didn't know what questions I should be asking!
I wondered if you could point me to any reliable sources of possible answers to the major question I still have which is: what does prednisolone do?
Does prednisolone help the adrenal gland to repair itself and make it again capable of dealing with the stresses of 'normal' life, or, once the damage is done, does the gland remain incapable of dealing with those stresses? (I'm not talking about the accumulation of stresses that led to the initial 'attack'. Clearly it needs at least a number of changes in lifestyle/diet to avoid that.) So, contrary to what my rheumy said at our first meeting, PMR IS a lifelong condition. (He also gave me the '18 months to 2 years' story, so I'm quite prepared for the less attractive answer!
Pred combats the inflammation that is caused by the shedding of pro-inflammatory substances in the body each day in the early morning. Reducing the inflammation reduces the swelling that causes the pain and stiffness - so the PMR symptoms improve. That is all the pred does - it has no effect on the actual underlying disease process that lead to the increased production of the ipro-nflammatory substances. That is an autoimmune disorder that makes the immune system go wrong so it is unable to recognise the body as "Self" and attacks it, thinking it is a foreign invader, just as it would attack invading viruses or bacteria in an infection. Just as that makes you feel unwell with flu or the like, the process makes you feel unwell with PMR. The pred doesn't change that - the unwellness and fatigue remain and must be managed in other ways, resting and pacing mostly.
PMR is nothing to do with the adrenal glands, there is nothing to repair. While you take above about 8mg pred the body knows there is no need to produce more of the body's own corticosteroid, cortisol, which is essential for life but the body is quite happy using the pred that is available, too much causes unwanted effects, so it doesn't produce more. Just like if you have the cental heating boiler running but also have a wood burner in the room with the thermostat, the boiler will produce no additional heat as long as the wood burner is on. Only when its heat falls away will the thermostat tell the boiler it needs to top up with some heat. But if the boiler wasn't being used all summer, the thermostat might be a bit dusty and take a bit of time to sort itself out, or the sun may be on it and it thinks it is warmer than it really is or there is a cold daught. The same applies for the adrenal glands as the dose falls, it is a very complicated feedback set-up and lots of individual things contribute and it takes a while to get into balance.
The potential to develop PMR seems to remain a lifetime thing - like most autoimmune disorders, there is no cure and although it can go into remission and you be symptom-free the possibly it may come back, especially if you are under stress, is there. But second episodes aren't that common, maybe 10% of patients overall, and can be totally different from the first attack. In 10 years on the forums I think I know of maybe half a dozen people who have got off pred for a few years and then had a relapse - out of thousands of contributors. 95% of patients DO get off pred sooner or later - but as you have already gathered, 2 years is the bottom end of the scale, the median duration of pred management is 5.9 years and obviously there are some of us who take longer or may never get off pred. But there is no way of knowing at the start to which group you belong.
What I can say is that loads of people get off pred and remain well and healthy afterwards. It probably takes a year for adrenal function to settle sown and 2 to 3 years to get back to anything like normal physically but you have also to remember that you have aged in the meatime. I know a lady in her mid-80s (at least) who has had PMR twice, got off pred both times and is now again running her large garden and chopping wood as she did before - but is finally adjusting it to make it easier to manage. I, on the other hand, have had PMR for 14+ years, have been on pred for 9+ years and live pretty well. I refuse to compromise on pred dose, I take what I need to feel well. Unfortunately I also have atrial fibrillation, originally also due to the autoimmune part of PMR/GCA, and it is closely associated with the vasculitis, it flares and the a/f gets worse. So at present I am taking enough pred to keep that under control after a flare in the spring and summer. It is far less easy to live with than the PMR.
Just ask if anything isn't clear or I missed anything, It is difficult to point to articles that are easy enough for lay persons to read, some make even my head ache! And your rheumy didn't tell you much because their knowledge is about limited to "it looks like this and pred relieves the inflammation" - they may know a bit about the mechanism but many don't if they aren't heavily involved with specialists who do research. That's what makes it so difficult...
Thank you SO much. That is all very, very helpful.
I think I still have a question but I need a quiet moment to sort out my thoughts. There's such a lot to get one's head round - particularly if, like me, one has a terrier-like determination not to let things go! (Probably one of my stress-inducing characteristics!)
Learning to be able to let things go is probably one of the most important factors in living well with PMR.
Hello, I'm back but mostly just to make sure I've understood. I realise that some of my puzzlement is the result of my, as a newcomer, not using the words in quite the same way as more experienced PMR endurers.
If I understand it correctly now: PMR is the collection of symptoms that indicate a condition in which (in my language) the autoimmune system has been so ‘challenged’ or overstimulated that it has flipped its lid and no longer recognises ‘ordinary’ levels of demand for its services and treats everything as an attack.
Consequently it creates severe inflammation/swelling etc in various parts of the body. Somebody, somewhere has classified this effect in this particular collection of parts of the body as Polymyalgia rheumatica. {My rheumy included a Latin word for 'symmetrical' when he gave me a longer version of the name and explained that it usually shows itself across both shoulders and arms, and centrally down the back in a symmetrical pattern.}
From your explanation I now get it that Pred is like a super analgesic and magically reduces the inflammation that the autoimmune system still wants to produce and, as you say, combats the inflammation that is caused by the shedding of pro-inflammatory substances in the body each day in the early morning.
The thing I am thinking of as ‘damaged’ is that inflammation-producing mechanism – ‘cos it’s not working now as nature intended it to.
My picture is that I have unwittingly caused most of that damage by making some poor choices in diet and lifestyle or submitting to insidious stress from all sorts of sources thereby allowing my system, physical and mental, to be overstressed. (I may have inherited a genetic predisposition to succumb to that stress making it pretty difficult for me to recognise that what I might be doing is OTT for my system. Because it is inherited it may seem perfectly normal to me.)
I have been using ‘PMR’ as the name for that ‘damaged’ state of the underlying system rather than for the attack periods when the symptoms are in full flow – still not quite sure whether that is how it is used. So I think I’ve got PMR whose symptoms are being managed by steroid medication.
I think you have answered my next question – which was, if that system is relentlessly blocked by Pred, how can it ever revert to default mode and get back to doing its proper job?- what I have been thinking of as being ‘repaired’.
Please tell me if I’m right in thinking that the answer is, in very simplistic language, that: the 'magic that Pred performs is to take over the job that the system was doing, by supplying cortisol (or something very similar), so the system takes a rest and lets Pred get on with it until the Pred is not supplying 'enough' for the default state.
I note what you say about the ‘complicated feed-back set-up’ so I won’t ask! I will just wait till I get down to 8mg of Pred and see what happens!
Meanwhile I will be looking out for those things that may be stressors and trying to eliminate them, or deal with them – in a non-stressed way of course! – so that flare-ups or relapses are kept at bay.
I am very heartened by your statistics of relapses and your mention of the 80-year-old woman. I am 78 - rapidly nearing 79.
Thank you again for your responses to my questions.
"My picture is that I have unwittingly caused most of that damage by making some poor choices in diet and lifestyle or submitting to insidious stress from all sorts of sources thereby allowing my system, physical and mental, to be overstressed"
No, all sorts of things can stress the immune system and many of them are nothing to do with you: as well as infections, which obviously put a load on the immune system, there are environmental, chemical, emotional, physical and ... and ... and ... other things which may upset the immune system to some extent. Eventually a straw breaks the camel's back and it flips out - but it doesn't have to be PMR that develops. It could be lupus, other forms of vasculitis, or forms of inflammatory arthritis. And you could never have known it was happening - there is also a genetic component, it isn't inherited but while having Scandinavian genes does make it a bit more likely it might happen, that is not definite and other ethnic groups also develop it, though less often.
PMR is the name given to the set of symptoms and there are several underlying possible causes - including some forms of inflammatory arthritis and a couple of cancers. These must always be ruled out before deciding the patient has the form of PMR we discuss here. Although our PMR typically responds very impressively to a moderate dose of pred (15-20mg) that isn't always the case and isn't diagnostic as some will try to tell you. It is not a good idea to start with a very high dose of pred - that may confuse the picture and exposes you to unnecessary pred. High doses would be used for PMR's big brother GCA which affects arteries in the head and can affect your sight if ignored.
Although you can't say for certain your past stresses caused it, one thing is certain - stress will wake up PMR symptoms!!! But it sounds as if you have a pretty good picture of PMR. One warning - just because you feel better on pred - don't think you are "cured"! You aren't and your muscles remain intolerant of acute exercise. Try to do too much and you will think the PMR is back in all its glory - when in fact it is actually DOMS, delayed onset muscle soreness, like you would experience if you tried to run a 5km race without training. Pacing is essential and that also helps with the autoimmune fatigue we almost all suffer from.
Hear, hear PMRpro. Just a small detail / spelling correction: do you mean 'DOMS'... ?
I did - duly changed. I was typing almost in the dark last night! Ta
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