Discussion about concerns that some dodgy treatments get promoted by patients to patients.

[Kati]

All claims. In keeping with the theme of this thread, where is the evidence?

Exactly.

 

[xchocoholic]

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.

Hi @alex3619

You may want to google "fda approved drugs lawsuits" and look for "When can patients sue drug companies ?" on the nih website.

Here 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.

We're also seeing lawyers advertise about suing drug companies, doctors, hospitals, etc for certain drug or medical device reactions. Currently I'm seeing ads for anyone harmed by the pelvic mesh and men who were prescribed testosterone.

Between the two, we get a good idea of how this system is working. And then there's the black box warnings which I seriously doubt anyone knows about until they're injured and google that drug. I was too sick to google flouroquinolones before taking it.

We have a new ad now about getting a check up now or later that's purely a scare tactic showing a female patient with her doctor and then showing her dead. The ad states you can get a check up now or get one later. I can't find it on the web right now tho.

Do you see all these advertisements in the UK ?

Tc .. x

 

[Jonathan Edwards]

Do you see all these advertisements in the UK ?

Tc .. x

I think that anything much beyond over the counter painkillers or general advertising of health insurance is illegal, or was, but I think I heard something about the current government shifting more to the US position. I hope not.

 

[Esther12]

This thread has moved too quickly for me to keep up, but I had these points stored in my mind that I wanted to mention:

A few pages back someone mentioned that they don't see promoting 'positivity' as a bad thing so long as it's done in the same way for CFS as other illnesses. I think that it's a bad thing for all illnesses. Sometimes the stress and hardship of illness can lead to people taking an unreasonably negative view of things, and there's nothing wrong with trying to cheer up people like that, but I think it shouldn't be assumed that illness necessarily leads to negativity. From my experience, and what I've seen of others, I think that people with CFS are often unduly positive about prognosis, especially around the eighteen month to five year period. I think we should be aiming for a nice, rational, even keel.

More generally, I think that there is a big difference between this sort of emotional care being provided by people's social circle and family, and when it's provided by an institution like the NHS. I don't think that this is the sort of thing the NHS does well, and when it tries it can end up doing a lot of harm - especially if it's without fully informed consent. There are some people who do not have a support network to turn to, and some sort of NHS service may be of value, but I think we should be wary of creating a group of people paid for providing 'expert care', and it's important to ensure that any claims of real expertise are critically assessed. Personally I suspect some lowly paid 'nice people' lacking in much real training would be just as good, and maybe better, at this sort of basic emotional support than highly trained and well paid mental health professionals. (This seems really OT now I'm typing it out).

Another general point re patient's responsibility to try to be evidence based: The trouble with this is that it's so easy to agree with. I expect that most complementary therapists would agree too - it's just that it's hard to get right.

It might be helpful to have a guide on treatments that would help people distinguish the experimental but plausible from experimental and loopy? Not a task I'd fancy. For Lyme testing, I was thinking that it would be helpful to try to have a stickied thread that provided info on different testing - what prevalence it found, if it held up under blinded conditions, etc. But for a lot of important things there just isn't good evidence to be posted.

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.

 

[alex3619]

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 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.

 

[IreneF]

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

 

[Jonathan Edwards]

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

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.

 

[Jonathan Edwards]

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.

My original thought was that just talking and reflecting on the potential for unwitting promotion might help. There is no doubt that people with financial interests manipulate this list, even if the more serious cases are probably weeded out by the moderators. 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.

 

[alex3619]

I try to remember that most things discussed here are hypothetical or experimental. They might be right, wrong or kind of right, but we do not know for sure yet. Some caution is always warranted.

There is also what Taleb calls the antilibrary, in The Black Swan. Anecdotal evidence falls foul of this a lot. We hear the successes. Who is tabulating and publishing the failures? Or are they lost to history? The antilibrary (iirc) is the things that should have been recorded, that might have put things in perspective, but nobody ever did this.

This is in part why science requires things like dbRCTs to be sure of treatments. Even then, there is a suspicion that such "gold" standard studies are wrong about 10% of the time. Bias can creep in anywhere, for so many different reasons. Even pure chance has an impact, especially in small sample sizes.

 

[xchocoholic]

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 found PR's guidelines on this tucked away under Forum Support / Moderation / Please read this before posting here / Forum rules / PR is not legally responsible for content.

Maybe we just need to clarify this and make it prominent. Most forums I've been on have a long spiel on how to post on the internet too. Imho, to the untrained eye posting with imhos makes the poster look narcissistic. But it's also cya for the poster.

Tc ... x

 

[xchocoholic]

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.

Imho (and maybe I read this on the web) advertising from big pharma and the medical community is purely for profit. I just wish they'd stop. Even IF some of these ARE funny. Imho, they must be cracking up when they're making these.

Being housebound and supine regularly leads to too much tv watching and advertisement fatigue. Tc .. x

Ps. Imho, the upside to all these ads is that the public sees how profit driven the medical profession is. I saw this first hand when I tried to give a group of celiacs at a support group mtg in a hospital mtg room nutritional testing info from what was considered a competitor. The hospital rep took them up from the people I'd given them too and told me I wasn't allowed to pass these out. I was so shocked.

 

[MeSci]

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

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

"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 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.

 

[alex3619]

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.

Lots of biochemical processes rely on oxidation to occur, including even synthesis of some hormones. If an extreme level of antioxidants are taken then they may interfere with these processes and create problems. Balance is the key. Now we face the dilemma that our balance is out of whack. So some parts of our chemistry may have too much oxidative stress. So when we counter this with antioxidants, they can work widely, even in places they are not needed. The only "good" news there is that much of our body appears to be under excessive oxidative stress, so much of it needs antioxidants. Yet we do not know the negative impact of the antioxidants ... we can speculate, but we lack good data.

Oxidation refers to the transfer of an electron. Its a simple chemical process. Lots of things are oxidants, and absorb electrons. Antioxidants typically give electrons, and are called reducing agents. (Though, just to confuse things, sometimes its hydrogen being transferred.)

A very large number of substances are either oxidants or reducing agents.

Living organisms make a large number of highly effective antioxidants. These are what we take, and are in many foods.

 

[IreneF]

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.

That's why I said "suspected". I try to be careful in how I word things.

 

[IreneF]

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 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've been feeling good enough this week to cook!

 

[alex3619]

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.

 

[MeSci]

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 is often said that modern agriculture has depleted soils of the complex range of nutrients that food plants used to take up, and which were thereby ingested by us. Also, that the range of food plants in the diet has, on the whole, been greatly reduced, sometimes to a few inbred strains of specific food plants rather than the wider range a hunter-gatherer might have consumed.

For myself, I eat as healthily as I can and also take supplements - belt and braces!

 

[JalapenoLuv]

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.

Both drugs and supplements have side effects and their own sets of problems. Supplements suffer from lack of standardization requirements and no requirement for research to support use and safety. One example of a toxic herbal was kava kava which was a popular sleep aid that was later found to cause liver damage.

What parts of their practice do you consider quackery?

From the 2014 Textbook of Natural Medicine that is core curriculum for naturopaths. Page xx, Sec 3.

• Traditional chinese medicine & acupuncture (treating chi deficiency)
• Aruveda & Unani medicine
• Fasting
• Homeopathy, glandular therapy, hydrotherapy
• Spinal manipulation to improve organic disease
• Eat right for your type (ABO associated polymorphisms)

If I headed the Dept of Education I wouldn't even accredit naturopathy for teaching this nonsense.

 

[shahida]

I totally agree that there is so much more science needed in the area of vitamins-nutritional science. For me the issue isn't the simple binary of either take them or don't but what and at what dosage do we need to take various vits.I take loads but i don't know why and there is a possibility- very real- that some of what i take is doing me some degree of harm For eg. there's a synergistic interaction between vits- take more of one you may cause a negative effect with the other- (i think magnesium and calcium are like this- ). 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. that was the thing i didn't get about J. E's comment- seemed like a scientist saying there was no real need for science of this area- ?!!!

 

[MeSci]

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.

The issue may be more that patented drugs stand to produce a substantial return for pharmaceutical companies, whereas supplements already in widespread use don't, and a large proportion of medical research is funded by pharmaceutical companies.

That said, studies are regularly published about supplements and various diets, but they are largely based on self-reporting, which can be inaccurate.

What I would really like to do is monitor my blood levels of nutrients so as to guide me as to what to take and how much. In the UK it can be hard even to get a doctor to arrange such tests, and no way could I get to the doctors frequently enough without it eating seriously into my time and energy which I need for other things.

As well as intake, we need to consider absorption and excretion. Some of us excrete excessive amounts of some compounds or elements (for me, one appears to be sodium), and there are also dietary components that can cause this to occur. Some medical conditions also cause excessive excretion of some nutrients, or mean that a person needs higher or lower intakes.

We are largely left to stumble on with trial and error.