Kati
Patient in training
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All claims. In keeping with the theme of this thread, where is the evidence?
Exactly.
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All claims. In keeping with the theme of this thread, where is the evidence?
If something causes neuropathy its very likely that the FDA, for example, will never approve it. Though this depends on what is causing the neuropathy. If its a temporary suspension of nerve capacity, then they might. If nerves actually die in numbers, then its very unlikely they will ever give approval.
After safety studies, I would reach for studies on outcome measures. How was recovery measured? What were the objective markers? Only after those would I look at subjective outcomes, to see if they differed in implication from the objective ones. (On this point CBT/GET fails - there is a clear mismatch between objective and subjective outcomes.)
If a treatment worked, and safety was acceptable, and likely responders and non-responders could be identified, then I would consider approval. However, that does not mean I would presume the theory is correct.
For example, Rituximab can induce full remission, and historically it was first used to treat lymphoma (RA came later I think), but I would not want to presume that its mechanism in ME is essentially the same as in lymphoma. I would want to see the mechanism tested, and pathways mapped, and then tested in light of the new understanding, and so on.
Just as a side point, I have a suspicion that neuropathy is a common long term consequence of ME, and that too much may lead to multiple organ failure, a common cause of death in us. It is also becoming clearer that many of us have comorbid fibromyalgia, and that this might in fact be a neuropathic disease.
Bold hypotheses are good. They have to be coupled with cautious and robust science though.
Do you see all these advertisements in the UK ?
Tc .. x
Hi @alex3619Here in the US, we're being bombarded with drug advertisements and told to go ask our doctors for them. If you google drug tv advertisement you'll see articles on this. Sometimes the disclaimers in these ads are longer than the promotional part. Lol. Some of them are hysterical.
I want to respond to a couple of posts that I can't find now.
"Pathogens don't cause autoimmune disease"
Not exactly true. The strep bacterium, for example, is suspected of triggering autoimmune responses in the form of rheumatic heart disease and glomerulonephritis (kidney disease).
http://textbookofbacteriology.net/streptococcus_3.html
While there is a problem that 'some dodgy treatments get promoted by patients to patients' I don't know how to really improve things. Maybe just talking about this a bit more will be of some value? Thanks to all those who have been discussing it here and sharing views on this.
It may also help to consider adding 'in my experience' or 'in my opinion' or 'according to Dr so and so' it bit more often when making statements about tests or treatments or theories of mechanisms.
I have seen some of these adverts. 10% promotional, 90% warnings, with happy images and music in the background.
This is the public relations age, or to use the old name, the propaganda age. Its often cheaper to propagandize a problem away than actually deal with it. This is becoming a huge problem not just in pharma, but in big industry and even police departments. If half the money spent on public relations for some police departments were spent on reducing crime, things would be better.
Public relations is fast becoming the social equivalent of giving a patient antidepressants so they stop complaining. In other words, we are being lied to. This is in an age in which investigative journalism is close to dead. Only the fifth estate, that is the internet, allows citizens to find out what is going on for the most part, but the level of misinformation is so high that to date its also part of the problem.
I want to respond to a couple of posts that I can't find now.
"Pathogens don't cause autoimmune disease"
Not exactly true. The strep bacterium, for example, is suspected of triggering autoimmune responses in the form of rheumatic heart disease and glomerulonephritis (kidney disease).
http://textbookofbacteriology.net/streptococcus_3.html
"My doctor wants me to stop taking vitamins"
I can think of three reasons:
They haven't been shown to help people who aren't overtly deficient, and people who take vitamins die sooner than people who don't. Weird, huh?
http://blogs.plos.org/publichealth/2014/08/21/multivitamin-supplements-increase-mortality-risk/
The antioxidant vitamins are maybe too much of a good thing. Clinical trials of vitamins A and E against lung cancer, for example, were stopped early because the patients who were taking the vitamins did worse than the non-treated patients. I don't know if it's been proven, but the theory was that the body needs oxidants to kill cancer cells, and antioxidants thwarted that process.
More:
http://www.webmd.com/news/20070227/antioxidant-supplements-up-death-risk
I agree with you about 'antioxidants' - we do need a certain amount of oxidation, not least in energy production. I think the term 'antioxidant' is way overused, and an overly-simplistic way of referring to compounds, foods, nutrients, etc. that have multiple effects.
That's why I said "suspected". I try to be careful in how I word things.Just a technical point IreneF:
We have no real evidence that rheumatic fever and post streptococcal glomerulonephritis have an autoimmune basis. To be autoimmune there has to be evidence of antibody or T cell reactivity to self. It was speculated around 1950 that rheumatic fever involved 'cross reactivity to self' but as far as I am aware this has never been satisfactorily confirmed. In both conditions there is a relatively short lived period of active tissue damage followed by scarring. You do not see long term active damage to tissues as you do in an autoimmune disease. So although rheumatic fever may look a bit like an autoimmune disease (and may well involve immune complexes) we have no reason to think it is - it is very unlike most autoimmune diseases in its natural history.
A lot of textbooks still continue to talk of cross reactivity or 'molecular mimicry' but the only condition in which this seems to have been reasonably well shown in Guillain Barré syndrome. Again, this is a short lived tissue attack process with prolonged and often only partial healing.
Pathogens can certainly cause disease beyond the immediate effects of tissue invasion. Rheumatic fever is an example, and so is Reiter's syndrome, which can persist for many years. But we do not see evidence for autoimmunity there either - it would now tend to be classified as 'autoinflammatory', which is not a good word but at least makes the distinction.
I was wondering about the sicker-people-take-more-vitamins issue myself, but it's such an obvious confounder that I would think it's been addressed (?) I recently went from 1000 IU to 2000 IU daily vitamin D, but that's because I live in a fog belt, don't go outside much, and when I do I wear sunscreen. (Red hair, freckles, family history of skin cancer.) Personally, I don't think there are really good reasons to take vitamins and supplements outside of a specific need. Much better to eat healthy food! I also think there are factors in real food that we can't replace with pills.I wonder if you are referring to my post in which I said that autoantibodies are not to pathogens, which is of course true? Autoantibodies are to self. Antigens, yes, but not pathogens.
There may be an indirect way in which pathogens could lead to autoimmune disease, and @Jonathan Edwards described it in this post. I then tried rather ineptly to summarise it in these two posts:
http://forums.phoenixrising.me/inde...rence-1-2-sept-2014.32344/page-20#post-501847
http://forums.phoenixrising.me/inde...rence-1-2-sept-2014.32344/page-20#post-501877
I don't have time to look at the PLOS blog (have read studies on the subject though) but wonder if it allows for the confounding impact of people with certain illnesses, or a family history of them, being more prone to taking vitamins?
I agree with you about 'antioxidants' - we do need a certain amount of oxidation, not least in energy production. I think the term 'antioxidant' is way overused, and an overly-simplistic way of referring to compounds, foods, nutrients, etc. that have multiple effects.
I've been feeling good enough this week to cook!
Not being well enough to cook is one good reason for us to take vitamins etc. Also there are specific needs in subgroups. More research is needed in the area of vitamins etc., and so much of what is published appears dodgy or makes overblown claims ... both positive or negative claims. I think a huge area neglected in the research is macronutrients though. Also we are just beginning to research the various factors in food that help us that cannot be considered vitamins etc.
Food is very much a superior way to get most vitamins and minerals though, especially if we can get high quality food, and then prepare it. However there are some who react so badly to most foods they are down to eating a small range of things. Such people often react to supplements too, but I would not want to recommend they don't take supplements if they can handle them.
I may say more later, my computer is dinging with incoming messages.
It would be great if we went through all that with pharmaceutical drugs, many of which are very toxic, but no one loses their children for taking that risk.
What parts of their practice do you consider quackery?
As ever more research is needed but i fear that this area will never get the funding it deserves - it isn't cancer, Alzheimers etc. and therefore afforded low/no priority.