[BBC] GcMAF: Unlicensed HIV drug 'nearly killed patient' (Noakes pleads guilty)

Further details about David Noakes:
https://en.m.wikipedia.org/wiki/David_Noakes

Lastly, a Washington post article about Bradstreet and Noakes.
https://www.washingtonpost.com/news...sm-cures-to-thousands/?utm_term=.78b20a7c8bfc

 

Wow - GcMAF intersects with the third rail of medicine - vaccinations and autism. I never knew that before...

Now I understand the hysteria in the Washington Post article - just looking at the adjectives used!! And 5 patients died (they were terminal!) Gee my mother died after taking chemo when she was terminal... I read and like the Washington Post, we are used to seeing the bias around the PACE trial - and hopefully we can be able to discern and weed it out in this.

Also interesting for me - because I inadvertently did the MAF while I was doing Keto, and trying to figure out why that worked - researched on line and
found something called the Swiss Protocol - which was GcMaf plus keto - as an immunotherapy for cancer patients. But I couldn't find any more info at all - and now I understand why - it was run by Dr Bradstreet, who killed himself. I don't believe in a minute that he was killed by big pharma.

I have two adult children who are heavily into conspiracy theories - and it is deeply distressing to me. Because of this I investigate thoroughly ideas that they bring up - not to debunk them (they are incapable of listening to that) but to learn for myself. They are always the result of poor logic and selective facts. I literally had an argument with one of them just now...he wants to teach me about the Electric Universe - and told me I was threatened when I said honestly I don't want to watch more videos. I would be happy to discuss with him but he is incapable of accepting my belief because he is threatened and projecting. Now I see how that could easily be reversed lol.... And he believes ME is caused by psychological factors - and he has two sisters and a mom with it.

Anyways, I always try to research controversial ideas dispassionately and look for cogent arguments. I'm very much a logical thinker and am curious why the MAF works for me. Jarred Younger's talk about the microglia (Macrophage in brain tissue) not being active in our heads was an eye opener. He is working on recreating this in a lab.

Anyways, love this site - I'm here for the science and logic of the members. And hope I'm not practicing any woo myself!!

 

I find this "snake oil" is a cliche use of word, to me its use appears to conform to the system. Sorry, but everything is snake oil for an ME patient and what you're offered is CBT and GET. The rest is snake oil. Seriously fed up with this. I have tried few "snake oil" or alternatives as I would say- made a little positive changes in my health situation. CBT and GET made me worse.

I do not trust known and tested risk assessments of the current health care system. I have given tested medicine by the system and almost died. I don't know what past and trends etc you are talking about but modern so called tested medicine is full of poison too.

By the way you can't always opt out of chemo, have you not heard some children made to continue with chemo by court order?

I am watching my neighbours 5 year old son being poisoned and suffering terribly and he is very terminal anyway. Would it not be better he was given some quality time with some alternative treatment? But that's not an option for them. He was not given a court order but no other option is offered. Just chemo, he will not survive and if there was a miracle and he did, he'll be very disable with all the poison that he's been given. Cheers for the tested poison/ progress!!?

 

@erin

oops, this is OT. Mods feel free to delete.

I thought one of the treatment options presented for final stage cancer treatment is palliative care: no chemo, just treating discomfort and helping the patient to make the best of their remaining time. It’s odd if that option is not offered, unless they believe the cancer is curable. In any case, it sounds like the parents can decline chemo at any time. Perhaps there are parts of the story that no one has let you in on.

 

Really? Seriously? Do you really think doctors understand the risks and rewards? I don't.
Chemotherapy maybe saved millions but it killed millions too. It is government sanctioned treatment/ drug and it makes pharmaceutical companies billions, it is a business.

Government and agencies won't venture other cheaper alternatives as it's not profitable. MHRA board of directors are the ex pharmaceutical employees and therefore there's a conflict of interest. They are only interested to keep the profits of pharmaceuticals.

 

It depends where you are in the world.

And sorry maybe I was not very clear, family can decline the treatment, but it is this or quick death so they are in a very sorry state and can't make decision. Chemo is given since he was 5,5 months old. It absolutely not helped, cancer keep coming back. They are willing to try other alternatives but they are not allowed.

Anyway, I don't want to divert the thread any more, sorry about this.

 

I understand where your coming from and i agree that modern medicine has mostly turned its back on us and a few malicious players perpetrated fraud.
But CBT/GET is snake oil and using it as an excuse to defend snake oil is ludicrous.
I get that your desperate, i am also, i watch time drifting away and wonder how much worse i will get and when we will actually have a treatment and my hopes tarnish with each passing day. But that does not mean that the easy answers of snake oil are the answer. I want to get better not believe lies or throw away my money and any health i have left.
Easy answers and lies make things worse not better and false hope is used to steal your money and possibly poison you.
If you don't want to accept this then we will never come to an agreement and might as well agree to disagree.

I have also had a nearly fatal reaction to a "safe" drug, it does not mean i will turn my back on science, but it does mean science is more complicated then some realize. This does not justify believing shysters, it means we need to better understand how things work, the opposite of the easy answers.

So because a certain government acts badly the whole concept is wrong and this justifies believing shysters?

People make decisions, good or bad. Because someone makes a bad decision (assuming it is a bad one) that justifies believing shysters?

If we are going to argue that the concept of testing and standards is wrong then thats yet another rationalization for believing shysters.

All roads seem to lead to believing anyone who makes promises they avoid properly backing up and claim persecution as an excuse to take your money.

 

I haven’t digested everything in this thread. Does this apply to the culture grown in yogurt sometimes called MAF 878? Apologies if I am asking something that was clearly explained, I’m not doing that great cognitively.

 

Alvin I am not defending snake oil. Using the word snake oil for all the alternatives is not right and you do not understand where I'm coming from.
I am not saying that alternative therapies are the answer either. Do you realize there is no answer? Do you understand that goverments and drug companies and their systems do not care about you? Can't you see that? Do you really believe that they can cure you, will develop a testing mechanism and a medicine to cure ME?

Alvin, it is not going to happen.

Government and system already giving you lies and throw away your money, yes everyone's money and poison you already. Can't you see this is happening already? That's why I mentioned cbt and get in my first post.

And I guess you don't want to accept this and yes, we will never come to an agreement and might as well agree to disagree.

You turn your back on science or not will not make any change. We do not have a luxury to take on science or turn back etc. These decisions are made on behalf of us. They are made by a machine like system and nothing to do with your choices. If you can't see this, I fear you can't see who really are the "shysters".

I don't think a certain government acts badly, they are more or less directed similar ways and this does not mean same way. Long political subject to discuss. And yes, the whole concept is wrong or should I say fraud. I don't believe in shysters anyway, maybe you should check and see the real
shysters and stop believe in them and believe in that there is a choice, we live in free society, we are progressed etc.

If all roads seem to lead to believing anyone who makes promises they avoid properly backing up and claim persecution as an excuse to take your money, as you say this is the road you have chosen. Your government, health system and the business behind it don't care about you. It is naive to think that they do.

 

Drug companies exist to make money. Shysters want to make money. Both have an incentive to sell you snake oil because its profitable. The system of testing and science is supposed to test and make sure the benefits outweigh the risks. Its not perfect by any means in testing, reporting, after approval followup or in other ways. But its better then unregulated anarchy where you have nothing but the word of someone who wants to take your money and maybe harm you in the process. The answer is to find the flaws and work on them.
As for ME research there is history and bad faith involved. I hope we can force change and research to happen to lead to treatments.

I'm happy to hear better ideas then fixing a flawed system but making it more flawed is not a better idea.

They are making mistakes (some gross) that i would love to fix but they are not equivalent.

You do realize our leaders are voted into office. We choose what road to go down. People often choose bad leaders and as someone once said democracy ensures you get the government you deserve. People who vote on single issues or for lies and easy answers will get them. If we want better we have to demand it not pretend there is no better way or the better way is to undo what little we have accomplished.

Progress is hard fought and well earned for our species, if we turn our backs on what we have accomplished out of a sense of frustration or fatalism then thats not an improvement.

The reflect what they have been elected to for the most part. If we want better then we have to vote for better. If we don't like governments who lie then we have to stop falling for them. A tall ask.
In the US healthcare is a huge issue because people don't want it taken away, they often vote for the party who brags about taking it away, even when that party lies and says they want to save it during election periods then once elected do what they claimed they would before the election was called. Thats all it takes to get votes, easily seen through lies. This is why we get the democracy we deserve and progress from medical research to drug testing is the way it is. That party is currently trying to undo current drug testing protocols leading to less tested and verified drugs in addition to trying to take away healthcare from its citizens.
We also don't really know if money we have been trying to get for ME research from the NIH is still there or will be there in the near future. We might get some more money then the budget gets axed the next day

I think this is the best road here.

 

If you really believe that drug companies exist to make money as you say you do, and obviously sustain their profits, the system of testing and make sure the benefits outweigh the risks that you talk about is out of the window. Testing can be not perfect as you say but pretty accurate but will they seriously and honestly implement this if the end result is against their profit making and sustaining the profit? So it is as bad as "unregulated anarchy", maybe even worse. I'm less afraid of mistake making but very afraid of lies and misleading for profit. Because the later is pure sinister, the intention is evil.

As for ME research I think it does not exists, there is no history and bad faith involved is not actually faith. It is easy to sell exercise, meaningless and non scientific psychiatry and the antidepressants. I don't know how you still hope for change and research leading to treatments. It is not happening and will not happen because it is not profitable.

I don't know what to say to a person who thinks flaws can be fixed when the flaw is profit and you kill the profit the system will collapse.

They are not making mistakes that is fixable @Alvin, they make it look like there are mistakes. They only want to make profit and you can't correct that.


I realize, or I know our so called leaders are voted into office by us gullible lot. We are allowed to choose the muppet or the puppet whom are more or less lead us the same road to go down. If you call that choice no more I can say. You are more than optimist if you think there's gonna be a good leader. Who's leading is not the problem; machine / system is the problem. It has its own mechanical works, driver is merely a part of the machine.

You demand what you want, machine does not care. You can not communicate with a machine anyway.

There is no progress, it is an allusion. Our species behaved shamefully so far within the written historical content. Look at the state of the world; nothing is changed; war, pollution, greed, destruction, racism, etc, I can go on all night about it.

I don't know much about US health care and the government. I don't care who you vote, the government get elected. There is no better one. There is no democracy. It's all an allusion.

You will never know if money you have been trying to get for ME research from the NIH is still there and will never know.

I'm sorry, I'm not at all mainstream person, I have a very different view of the world and the life. Never the less, all I want is same as what you want a cure; my health back and health to all in this world. Unfortunately not a very profitable wish for the world leading design, the truth is that they don't want that to happen.

 

Unfortunately we are in a black hole region of medicine. A previous physician’s copy of PDR recommended amphetamines from my CFS condition. We both had enough sense to realize that that was probably not entirely safe, to put it mildly.

Experimenting with things that are biologically plausible and have anecdotally worked for other people is what we must do. It’s far from ideal, it’s fraught with possible error, but it is neccessary. One could go with the NHS official recommendations of CBT and GET, I’ll pass on those thank you very much.

 

Unproven experimental drugs based on 'pet theories' from 'leading ME specialists' are equally as dangerous as CBT/GET.

 

@Alvin

Neither party is our friend in the USA. My disability benefits were quietly cut back to pay for the US ACA “healthcare for everyone“ program, usually called Obamacare.

Let’s just say that after the fine print the actual result of ACA is that it’s not healthcare and it’s not for everyone, you can’t keep your doctor and it costs more for most people not less. People whose income is cash off the books or who actually have income the qualifies for a subsidy get their healthcare paid for by everyone else. But money represents time, materials, energy, inspiration and effort. There’s a limited supply of those things and when they are re-directed to some, they are taken away from others.

With my cognitive deficit’s and zero social network I bought into the hype when Obamacare was originally proposed. Then I experienced the reality, it was like diving into sparkling blue water and finding out that it is radioactive acid.

Fortunately my plan is not technically part of Obamacare, otherwise I would have had zero coverage at the one reputable MD in the metro area who treated people with our condition and was available to see patients. ZERO.

One of the wonderful features of ACA is fully electronic patient records. Along with that comes fully electronic monitoring of the doctor’s prescriptions for each patient. By the book, the only thing to prescribe for us were powerful stimulants (Such as amphetamines). Somebody with a long established practice may be able to get around that with creative coding, at some professional risk. No surprise then, that the number of people specializing in our condition is going down, not up.

I expect nothing good for us from either political party, the further they will stay away the more room we have to work out something for ourselves. The one thing we need is federal research funding for large scale research. It seems like that will come out of the bureaucracy if at all, not from any party leadership.

 

If it’s from a complete charlatan, yes.

If it is from someone who has used reasonable biological assumptions and has had seen the results of using it on hundreds of people with this illness, then definitely no. Look up Rich van Konneyberg, who was of immense help to many of us. He was not an M.D., so that would meet your criteria for “person out of nowhere”. Yet he came up with more useful treatments for us then our entire federal bureaucracy. He also did more good then every M.D. I saw until I met one of the handful of M.E. specialists in the entire world. Rich did so by using sound biology and partnering with an M.D. who could prescribe, not by looking at the stars, mystical texts or feeling cosmic vibrations.

 

Yes, @Sisyphus it appears to be. The thread is about both- the original articles are about GcMaf only. I haven't heard anything about any dangers associated with MAF 878 (probiotic version) and the cost is $100/month, less than the cost of the injectable GcMaf.

 

This thread is about the fact that David Noakes has plead guilty to manufacturing an unlicensed substance, and money laundering amongst others. I am not sure who manufactures MAF 878, but the fact that it costs 100$ per month in order to access a substance that has not as far as i am aware, been tested in double blinded randomized clinical trials should raise some red flags.

Secondly, everyone could have a positive response providing they are invested (financially, mentally) into a product and into a physician who himself may be invested in the product. This is called the placebo response.

Lastly, the name of this forum is ‘Science for ME’. The promoter of GcMaf was a fraud who made claims that were un-scientific, and who produced a product that did not met manufacture standard let alone scientific standards.

It is red flags after red flags. Science needed.

 

@Milo - respectfully, I am aware that many patients cannot afford the cost of even $100/month for medications or supplements - and I consider myself lucky that I can (so far) afford it. My daughter had the opportunity to go on an antiviral (one of the V's) that is prescribed by the most respected ME drs - with insurance discount it ran to $3000/month. That was absolutely ridiculous!! And who knows if it would have helped her - I don't think there are any studies on that.

I am in FULL remission from the MAF plus my diet - unless I have an inflammatory event. From bed bound to hiking up mountains?? I don't think that's a placebo response. I have gone off and on everything that is part of this for the past two years- and every time the remission goes and comes back.
Yes, in many cases there is a placebo effect - but definitely not in my own experience with MAF.

Yes - I am here for the same reason - Science for ME. A promoter of GcMAF did unethical and fraudulent, as well as criminal things. That doesn't follow that the GcMaf itself (properly manufactured) isn't a good product.

I think I should retire from this thread - my son is giving me too much grief today and I've been a bit harsh on my severely ill daughter - and don't want my home frustration to be pouring onto the page here also.

No hard feelings and love to all

Kafka

 

This 2008 article by Cancer Research UK discusses the small number of GcMAF cancer studies that had taken place in 2008, and points out the flaws in them, and concludes that "although this particular approach isn’t all it’s hyped up to be, harnessing the power of immune system could be a very potent way to treat cancer".

This review 2017 paper from Iran, which is more up to date on the latest studies, says:

However, it's tragic for ME/CFS patients that over-hyped cancer-cure claims resulted in the production of GcMAF being closed down in several instances. Some of the high quality sources were closed down, leaving ME/CFS patients with much less choice regarding buying different brands of GcMAF. If you read the ME/CFS forums, you find patients reporting that some types of GcMAF work for them, but others do not, or have much reduced effects.

Funny how ME/CFS patients have found that one brand of GcMAF works for them, but another type does not work. Is this a new type of brand-specific placebo effect?

 

Ah, but you omitted to mention the multiple retractions on GC-Maf scientific papers. It is red flags after red flags. That article is not good news for the Gc-MAf proponents. There are no clinical trials results, and apart from the paper which you have submitted, here is nothing else showing on Pub Med.

Also, cancer studies have not resulted in oncologists changing their practice and current protocols which represents best evidence.