Miracle cures. Diets. Supplements. Cleanse. Detox. Evidence?

[Kati]

One thing I've noticed on this forum, that's been concerning me for years, is the number of people who seem to have developed orthorexia. It's really unhealthy for someone with ME to restrict their diet hugely because other people are telling them entire food groups are bad, not because they actually need to.

Much agreed from my viewpoint.

From my oncology RN perspective, I have had patients who came with 1000$ worth of supplement on their first chemo day, for the first month supply, because they have been told it would kill the cancer. There is a market for desperate people.

Recently on twitter a breast cancer patient mentioned breast cancer tweet chats and how the discussion goes about. The chats revolve not around what to eat to beat cancer, but around the chemo protocols, the incoming climical trials and what evidence-based best practices are.

i so can't wait till we get there.

 

[Violeta]

Well @Violeta many groups are worthy of being supported. Open Medicine Instutute is one of them. Simmaron Research and Dr Lipkin/Hornig group are also very worthy of being supported.

Okay, what a plan. Eat whatever we want, donate our money to research, and wait. And if we get cancer while we're waiting, go to an oncologist for chemo.

 

[Violeta]

Much agreed from my viewpoint.

From my oncology RN perspective, I have had patients who came with 1000$ worth of supplement on their first chemo day, for the first month supply, because they have been told it would kill the cancer. There is a market for desperate people.

Recently on twitter a breat cancer patient mentioned breat cancer tweet chats and how the discussion goes about. The chats revolve not around what to eat to beat cancer, but around the chemo protocols, the incoming climical trials and what evidence-based best practices are.

i so can't wait till we get there.

What is breat cancer?

 

[Kati]

What is breat cancer?

Breast cancer. Typo.

 

[barbc56]

Okay, what a plan. Eat whatever we want, donate our money to research, and wait. And if we get cancer while we're waiting, go to an oncologist for chemo.

I don't see a problem with this. Why wouldn't you go to an oncologist?

The further we get from solid scientific research, the further we are from finding a cure, if that is even possible, as well as symptom relief.

Science is not perfect. We have to look at it critically from many directions. There's a lot, maybe not enough, who are starting to look at science with a more critical eye.

But at the moment, it's the best method we have to find out what helps and what doesn't

https://www.sciencebasedmedicine.org/answering-our-critics-part-1-of-2/

https://www.sciencebasedmedicine.org/answering-our-critics-part-2-of-2-whats-the-harm/

Barb

 

[barbc56]

From my oncology RN perspective, I have had patients who came with 1000$ worth of supplement on their first chemo day, for the first month supply, because they have been told it would kill the cancer. There is a market for desperate people

There is increasing evidence that shows vitamin C may interfere with chemotherapy and even promote growth of cancer cells.

http://well.blogs.nytimes.com/2008/...-cancer-treatment/?_php=true&_type=blogs&_r=1

http://www.ncbi.nlm.nih.gov/pubmed/25601965

 

[Kati]

There is increasing evidence that shows vitamin C may interfere with chemotherapy and even promote growth of cancer cells.

http://well.blogs.nytimes.com/2008/...-cancer-treatment/?_php=true&_type=blogs&_r=1

http://www.ncbi.nlm.nih.gov/pubmed/25601965

Oncologists where I worked actually do not want their patients on supplement regimen while on chemo because of synnergic effects and potential toxicity related to both treatment regimens. Chemo is definitely hard on the body, and should there be adverse reactions one need to know exactly what the patients reacted to.

They were allowed to do whtever they wished once the chemo was over with.

 

[GhostGum]

You can throw the baby out with the bath water if you want, but it is clearly not that simple. There is obvious value in many things discussed here, as there are throughout the diet and supplement world, but at the end of the day it is simply a hedging of bets and a crap shoot, sometimes more so than others.

I mean we know many environmental pollutants and toxins (especially man made ones) can cause cancer, at the same time it can also be clearly genetic. Sometimes changes in habits and diet is clearly going to help some where the issue has been influenced by environment, then other times it is probably going to be no help at all. It is also obvious that there are many different cancers with potential causes, grouping everything as 'cancer' is clearly a bad generalisation.

If you got cancer you would not worry about the potential benefit from adding a ton of micro nutrients from good fresh vegetables, adding fresh garlic/ginger/spices, anti-oxidant fruits, certain mushroom species? Just because this does nothing for some people, it is crazy to think it does not have potential, in the least to help you deal your system deal with conventional treatments and prolong your life. I would be changing my diet, adding all types of different things, probably a few choice supplements; maybe I still die and the guy living off maccas makes it, shit happens.

B12/methylation has basically saved my life, but my history and hallmarks, in hindsight, fit this profile more so than others. While others with different onsets methylation probably has no relevance at all. We are all here due to similar symptom sets/experiences, which more often than not is incredibly similar, it does not mean our onset and cause is actually the same.

Chicken and egg, work it out for yourself, or do your best; which is all any of us are trying to do.

 

[barbc56]

Oncologists where I worked actually do not want their patients on supplement regimen while on chemo because of synnergic effects and potential toxicity related to both treatment regimens. Chemo is definitely hard on the body, and should there be adverse reactions one need to know exactly what the patients reacted to.

They were allowed to do whtever they wished once the chemo was over with.

I highlighted a part of your post that I think is very important.

My BIL is an oncologist/hematologist and says the same. While he discourages supplementation but probably some patients do anyway.

Philadelphia's Children's Hospital has removed most of supplements from it's lists of approved medications. Other hospitals may follow.

One factor is the lack of regulation so the supplements may contain unknown ingredients or the supplement itself may interfere with treatment.

http://m.livescience.com/40322-philadelphia-childrens-hospital-bans-dietary-supplements.html

Note that they do use a couple of supplements such as melatonin which has some science behind it and of course for any vitamin deficiencies. These are prescription vitamins which are regulated.

ETA

http://m.livescience.com/28736-dietary-supplements-recall.html

Barb

 

[GhostGum]

I don't see a problem with this. Why wouldn't you go to an oncologist?

The further we get from solid scientific research, the further we are from finding a cure, if that is even possible, as well as symptom relief.

Science is not perfect. We have to look at it critically from many directions. There's a lot, maybe not enough, who are starting to look at science with a more critical eye.

But at the moment, it's the best method we have to find out what helps and what doesn't

Barb

And how many oncologists are fighting/pushing for medical cannabis use, in the least as an adjunct for symptom relief and to help abate the sides of radiation/chemo? I am sure some are, but what is the hold up? There is also studies and evidence all over the place of its potential to even cure some cancers. It is still a Schedule 1 drug in the US btw, has no medical value apparently and should not be researched; meanwhile Meth sits at Schedule 2.

Sorry but the system is incredibly bias and adverse to anything that exists on the open market, your reasons above about lack of regulation is a fair point, but there is clearly other reasons and the waters are endlessly muddied.

I like in that article you just linked as well, the link to information about placebo's, even though CoQ10 has been around for decades with extensive research and was approved for use for congestive heart failure 40 years ago in Japan. Why it would be suggested for cancer though who knows.

 

[barbc56]

And how many oncologists are fighting/pushing for medical cannabis use, in the least as an adjunct for symptom relief and to help abate the sides of radiation/chemo? I am sure some are, but what is the hold up?

Ever hear about Marinol? I don't know about other countries but here it is an FDA approved prescription medication in every single state.

http://www.drugs.com/pro/marinol.html

There is also studies and evidence all over the place of its potential to even cure some cancers

Do you have citations that show this? "All over the place" doesn't count.

Oncologist have extensive training and experience with issues of pain control.

Barb
.

 

[GhostGum]

Ever hear about Marinol? I don't know about other countries but here it is an FDA approved prescription medication in every single state.

http://www.drugs.com/pro/marinol.html



Do you have citations that show this? "All over the place" doesn't count.

Oncologist have extensive training and experience with issues of pain control.

Barb
.

Yeah I have heard of Marinol and SativaX, and my understanding is they are inferior products to the real thing, or especially the concentrate derivatives you can get from dispensaries these days. Sorry but I can not take the FDA or big pharma seriously in the least on this subject, it has been their goal the whole time to slowly work it into their product lines while lobbying governments to maintain prohibition and your ability to do it yourself.

Developing the science and our understanding behind it all is fine, but we do not need the FDA to tell us what works and what does not, when dispensaries have been doing it for a long time and treating patients. Maybe specific better understood products will be helpful in the future, but why should anyone wait.

This article covers the subject pretty well and sites some studies,

http://illegallyhealed.com/numerous-human-clinical-trials-of-cannabis-for-cancer-in-2015/

Edit: Sorry that^ is not great for past studies, there is a large list here at the bottom of this article (the title is terrible),

http://wakeup-world.com/2015/05/17/over-100-scientific-studies-agree-cannabis-annihilates-cancer/

 

[Violeta]

One thing I've noticed on this forum, that's been concerning me for years, is the number of people who seem to have developed orthorexia.

Everybody has different standards especially when one is sick. Who is right? Who is wrong? i say, please refrain from judging other people.

Much agreed from my viewpoint.

I'm still waiting for a reply to why it's okay to judge people who find that changing diet helps their overall condition.

And whoops! Did you forget to warn everybody how dangerous homeopathic remedies are?

 

[Valentijn]

I'm still waiting for a reply to why it's okay to judge people who find that changing diet helps their overall condition.

I don't think that is what she said. She seemed to be talking about people who advise major reduction in diet variety based on flimsy half-baked theories in the absence of any evidence.

If avoiding some foods has noticeable benefits for someone, then they should avoid those foods. But if it is not having obvious benefits, it is not helpful and can even be harmful to avoid a lot of foods in the baseless hope that it will somehow cure them.

 

[Calathea]

I'm talking about the people who are changing their diet because everyone keeps telling them to, not the people who made a change that actually helped. There are people who are malnourished, people who are having blood sugar problems, people who are exhausted and stressed up to the eyeballs trying to keep up with a difficult and expensive diet, and people who find that it has a really damaging effect on their mental health. That's worth being concerned about. Orthorexia is actually a mental illness, I'm talking about that rather than situations such as giving up dairy and finding that your migraines and IBS massively improve (which happened to me when I went vegan at 19).

I also don't like all the pressure on people to go raw/paleo/whatever. When I was having a huge mast cell disorder flare-up recently and having big histamine reactions to food, I was desperate to find something to eat that would help. So I followed the advice of the Low Histamine Chef, having not yet read in depth enough on her site to notice that she no longer advocates a low histamine diet, and tried vegetable smoothies. They were low in fruit, I'm not talking more than an apple in a day here, but the amount of sugar involved was still enough to set off the worst pelvic pain flare I have had in my life. These things aren't harmless. I've met people on a raw diet who are really aggressive about pushing it, tell you that anything else you eat is "processed rubbish", and vehemently deny the health problems that are common in raw dieters, especially dental problems. I had someone tell me I should be gnawing on raw courgettes (zucchini) when I was too ill to chew much and kept ending up in hospital due to collapsing, that was completely inappropriate. She was the person who made the "processed rubbish" comment, told me that a raw courgette would provide "proper nutrients" which seemed to mean a few vitamins but next to no calories, and strongly appeared to have orthorexia. A lot of people with ME are underweight, especially the ones who are more severely affected where it's more dangerous to be too thin, and telling them off for consuming foods with good amounts of calories in them is the last thing we should be doing.

And yes, what @Valentijn said.

Homoeopathic remedies are an excellent example of pure placebo and an outright scam, but I have no idea what point you were trying to make there. They're only dangerous if you are stopping taking meds you actually need in favour of them. They're entirely unethical and should be banned as fraudulent, of course.

People who go on about Big Pharma often seem to forget that Big Alterna is in it for the money as well, and has less scientific research and usually no regulation going on. We should be careful with all of it.

I completely agree that drugs regulation is all over the place and needs to be sorted out. I'm in favour of decriminalisation and regulation, personally. Cannabis definitely needs to be made available, and properly researched and regulated for medical use.

 

[Violeta]

I don't think that is what she said. She seemed to be talking about people who advise major reduction in diet variety based on flimsy half-baked theories in the absence of any evidence.

If avoiding some foods has noticeable benefits for someone, then they should avoid those foods. But if it is not having obvious benefits, it not helpful and can even be harmful to avoid a lot of foods in the baseless hope that it will somehow cure them.

If you read the three quotes in my previous post,you will see that both Kati and Calathea are judging people for their own dietary choices.

 

[Violeta]

omoeopathic remedies are an excellent example of pure placebo and an outright scam, but I have no idea what point you were trying to make there. They're only dangerous if you are stopping taking meds you actually need in favour of them. They're entirely unethical and should be banned as fraudulent, of course.

There you go, that just had to be brought into this conversation.

 

[PeterPositive]

There is increasing evidence that shows vitamin C may interfere with chemotherapy and even promote growth of cancer cells.

http://well.blogs.nytimes.com/2008/...-cancer-treatment/?_php=true&_type=blogs&_r=1

http://www.ncbi.nlm.nih.gov/pubmed/25601965

No, not really. That's no "increasing evidence". The 2nd article is not even relevant...
And if you only had read any of the comments below the first article you would have discarded the study as evidence of anything at all...

It's got nothing to do with humans...

 

[Calathea]

You are the one who brought up homoeopathy, in case you forgot! Comment 34 (how can a modern bluetooth keyboard not have a hashtag?). Anyway, we are now at the point where you are judging me for judging people who judge other people for not eating "healthily" enough, and snarling is starting all round, so I propose we drop this. The three-way (possibly four, depending on where Valentijn) judgeathon made me chuckle, but I am pretty bored by now and unfollowing this thread, so please don't tag me in further comments.

 

[redaxe]

I'm more and more inclined to the opinion that a lot of this diet, vitamins, cleansing.... is really just the other side to psychobabble in what is essentially a double-sided coin that blames the cause of disease on the patient.

1) Psychobabble - You 'think/believer' yourself into illness - you are to blame because you have a poor/lazy attitude.

2) Alternative/Integrative medicine - You are sick because you have not been looking after yourself and you should feel ashamed of eating poorly, being overweight, not exercising etc..... 'You are chronically fatigued because you are overloaded with toxins so you need to do a liver cleanse'...... You should be ashamed of eating gluten, drinking milk, having mecury fillings, not eating probiotics..... believe me I've seen integrative doctors who basically treat their patients like shit and charge them $500 an hour to manipulate them into spending even more money on this stuff. And privately they own large large hobby farms living the dream so to say.

In both cases there is a lot of money, businesses and careers at stake. I think one reason why this pseudomedicine has gotten so much traction is the failure of conventional medicine to 1) obviously diagnose and treat ME/CFS and 2) More generally to dole out drugs that merely treat symptoms too readily WITHOUT really understanding/treating the cause of disease. I'm astonished to see how much commercial tv advertising in America is done by drug companies pushing drugs for various ailements - some with pretty nasty side-effects too.

That said I do think though that this is improving. To give one example; medicine is now researching probiotics, fecal transplants etc - an area that traditionally only alternative medicine would examine. Medicine seems to be taking into account the link between the gut and the brain and immune system for instance. These are things that doctors are listening to today - whereas 20 years ago you'd probably be laughed at. And it will probably revolutionise the way we look at allergies, autism and a range of neurological issues.

A common view on these forums is to see people blaming their present illness on their perceived poor health choices in the past. I think this goes too far. I know people personally who have eaten a diet that has actually given them scuvy! I'm not kidding - they felt really sick and went to the doctor to come out with a diagnosis of scurvy and they then realised they hadn't eaten fruit/vegetables for over a year. This person also used to smoke a tonne but the irony is he still looks 10 years younger than he actually is. I know others that used to drink alcohol way to excess and basically live on a diet of McDonalds and fast food.....
Now none of those people have ME/CFS and my diet/health has always been way better than that. But essentially a naturopath can tell everybody that they have adrenal insufficiency and hey I'm sure that if every person on the planet filled out this questionnaire 90% of the entire human race would be diagnosed with adrenal insufficiency
https://www.adrenalfatigue.org/take-the-adrenal-fatigue-quiz

I am guilty for letting alternative doctors pull things over my eyes. I remember having a phone consulation with one such 'doctor' who told me I was infected with bacteria, viruses, mold and lyme! Essentially the message was that I had to pay $1000s to get long term vitamin c therapy, infrared sauna's, glutathine, cholestyramine and whatever other expensive therapies he prescribes.