Has anyone come across petrovic protocol?

[sulamaye]

Hi, a visitor to my house had severe m.e for seven years and recovered after 3 months of treatment by Dr petrovic. She has been fully recovered for many years now and I just wondered if anyone here has come across it or more importantly tried it as I am giving it serious consideration as I'm just about to get my PIP payment back dated and like throwing money into the never ending black hole of my recovery....

[Hidden]

Never heard of them, what does the treatment entail?

[sulamaye in reply to Hidden]

An intensive quantity of pill taking, up to 100 a day, of a balance of amino acids, supplements, etc etc. Google him

[Hidden in reply to sulamaye]

maybe cut down some of the footwork for me instead of having me trawl the web please?

[ukmsmi4 in reply to Hidden]

Hi Raffs

I've never heard of it either but I found this website. Bear in mind though this is the clinic's own website so it does sound a bit like an advert. I'm looking for reviews and comments from ME organisations which I think will be more pertinent than their own claims.

cfidshealth.co.uk/

Margaret

[Hidden in reply to ukmsmi4]

Thanks Margaret, yeah it looks like an advert with no real substance to the info - I always am weary when I see synergistic written with very little other info.

Would be great if it were true but I would like comprehensive details before I started any treatment and I would like the details on the treatment well published, (I am very weary of people who have laboured their whole lives to cure/treat a condition but then only give it to the highest payers!).

[ukmsmi4 in reply to Hidden]

Exactly. I'm not saying it is unfounded rubbish but as yet I can't find anything about it on other medical or scientific sites or any comment from ME organisations. Only a few comments from people on forums who say it involves taking 100 antioxidant and supplement pills a day and the regime costs thousands of dollars. According to one guy if you read the testimonials even on their own site he reckons most people only get 40% better.

I'm sure there is something in it , but a miracle cure? Sorry to sound sceptical but to me it sounds more like a scam to rob you blind. I may be wrong but like you I remain to be convinced, not so much of the clinics science but it's motive.

[Hidden in reply to ukmsmi4]

That would sum up my feelings on it.

Again if I spent my time developing a cure for something I would be shouting it from every roof top and ensuring that as many people as possible knew at least the basics about it.

To me, with little info being put out it is designed to attract the desperate, monied or gullible people!

[sulamaye in reply to ukmsmi4]

I know for a fact that one person did have a miracle cure else I wouldn't be showing any interest in it.

A social worker came to see me about a personal matter and I had warned her that I had m.e. She told me she understood as she had had it herself for seven years, her life, like mine, had been ruined. She did petrovic and within 3 months she was better, she took the protocol for five months in total. She made a full recovery and has never relapsed. That was fifteen years ago and she returned to social work full time a very stressful job.

She was not evangelical about it, she was matter of fact. She was telling the truth and so as you can imagine it was a very compelling testament. It is the only time I have talked to someone who claims to be cured by a single thing who evidently was still very ill when they started the treatment and recovered so radically and swiftly that the treatment was evidently the cause.

I met this woman two months ago and have been turning it over in my mind since. Perhaps you can see why I am even considering it.

[sulamaye]

Like you I find it hard to know why if someone has something that has potentially worked they charge so much or it has not been properly tested. Although when I think what my supplements cost taking 100 a day could easily cost £30-40 a day.

[ukmsmi4]

Hi Sulamaye

Yes I can absolutely see why you are interested in finding out more. And it may not sound it to you but believe me I am too. I'm delighted that your friend has found a cure for her illness, it's always a good thing to hear when someone who's life has been turned so comprehensively upside down finally manages to get back on their feet. And like you I desperately wish I was there too.

I'm not saying the science is rubbish, that it won't help at all and I'm not even saying that you shouldn't try it. I'm just urging caution. I just think whenever we go searching for that elusive cure I think we need to bear a few things in mind.

•We need to look at the validity of their claims. Is there sound scientific research to back it up. Has it been reviewed by their peers, do they support it. Do the organisations that support the illness have anything to say about it or do they have members that have tried it.

•We need to think about their motivation for offering treatment. Are they driven by a desire to cure or a desire to make money. The less detailed information they provide, the stronger the chances are that they are motivated by money.

•We do also need to apply a similar analysis to any comments from or reviews by others about the treatment

•We also need to apply a similar analysis to any testimonials of people that have tried the protocol

•We need to remember that science and the medical profession are still arguing about what the condition is and what causes it. If someone is claiming to have found a cure why isn’t the rest of the profession aware of it or backing it

•We need to remember that it is said that as many as 40% of people diagnosed with ME in reality have a different but similar condition. Much of the research says ME is linked in some way to all sorts of conditions like MS, fibromyalgia, lupus, rheumatoid arthritis, hashimotos, POTS, lyme disease, food allergies and many more. So if the link is there the chances of the 40% being accurate is quite high, especially as most people don’t get tested for most of these things. I’m not saying she was but it is entirely possible your friend was one of those 40%, or indeed you or I may well be and hence that MAY be why the cure worked for her

•We need to remember that this disease is complex with many many symptoms and aspects to it, so it is possible that there is more than one cure for it. Or that what works for one does not necessarily work for another. After all we all manifest symptoms differently and react to different medications differently. Perhaps it depends on what is the root cause for each of us

Like I say, I'm not saying it's rubbish or don't try it. But just research it a lot more before you throw what money you have at it and bear all these things in mind when you do your research.

As Raffs says, the less information you can find about it, particularly from within the scientific or medical world, then the more sceptical I would be. Though as with everything, it is your money and your life so obviously it is entirely your choice. But I would want to be a lot more certain before I went down yet another potentially blind alley and potentially wasted money I don't even have.

Best of luck and I do hope you and everyone soon finds what works for them.

Margaret.

[Hidden in reply to ukmsmi4]

Perfect post, has it all well said Margaret, glad you could get my thoughts together so well!!!!

[ME65]

The problem is that the term ME is a catch-all diagnosis for anyone with a set of enough matching symptoms. Some people will spontaneously recover, even after several years, and whatever they were trying out at the time becomes their "cure". If someone is able to get the right kind of care and support they can improve, and a good diet with supplements that support energy metabolism at cell level does help (I can tell you what has helped me if you wish). But we are all individual complex personalities with bodies that respond differently. Even in other well understood and supported illnesses there are those that miraculously recover and others that remain in a chronic state or go down and down.

I wish you well but would advise careful research before blowing all your money on stuff that basicly ends up down the toilet!!

[sulamaye in reply to ME65]

Obviously I wouldn't be asking about it on this forum if I wasn't cautious and fully aware of the potential issues.

Secondly though, I think it very unlikely that someone spontaneously recovers going from bed and housebound to fully engaging with life in a matter of weeks. Everyone I know who has 'sponetaneously recovered' after being ill for over 6 years has very slowly made forward movement.

With all due respect I wasn't asking the question to be told what I already know after four and half years of spending money on everything going from Myhill to Gupta to Metabolic typing to all the alternative treatments, EMDR, OHC the lot. I was aksing to see if anyone else on here had first hand experience of the protocol.

I have enough skeptisim to go round, hence my ironic way of phrasing the question.

[ukmsmi4 in reply to sulamaye]

That's a good point about a "spontaneous recovery". Given how ill people can be I too strongly suspect you have to at least have spent a long time laying the ground work before you find what tips you into recovery.

I also wonder whether people who truly have ME, truly do recover, or do they just find something that helps them to manage the condition sufficiently well that they can regain something resembling a normal life.

If the condition really is related to things like rheumatoid arthritis, lupus and MS then they are still considered to be incurable diseases, so is ME also only at best manageable.

Only properly funded and soundly based research is going to tell us that, and as yet we don't have that in this country. We are just left to find out for ourselves like neglected and abused guinea pigs.

[sulamaye in reply to ukmsmi4]

I live with someone who had m.e for sixteen years, she had very similar experience to me, her symptoms etc. I think we're on a hiding to nothing to get into the idea that if you recover you never had it - I personally think that is crazy. Yes some people recover, some people have cancer and die and some recover, it doesn't mean they didn't have cancer. Of course it is tempting to think in frustration how can you be better you don't have what I have? And if people recover after a year or so then I'd say they didn't have what I have, but when we're getting into years and years of illness and then recovery then they had m.e in as much as you or I have it because it is muti faceted and each individual's experience is unique. The same will go for many other illnesses and diseases.

My partner spent 16 years of her life hostage to m.e. Her recovery was very slow, steps forward steps back, no rhyme nor particular reason to why back, each thing tried took a bit forward sometimes fell back etc etc BUt she is recovered because she has been running around caring for me and my daughter for the past four and half years and hasn't crashed yet! She has been recovered for ten years now.

[ukmsmi4 in reply to sulamaye]

I hear what you are saying and you could be right. But don't forget you can prove with tests if someone has cancer and many other similar conditions, you can't yet prove that for ME.

But that was kind of my point. Until science finally once and for all finds out what the condition is, what causes it and therefore how we can test for it we will never really know for sure.

I agree the assumption that if you recover you didn't have the condition in the first place may turn out to be wrong, but that hardly make it crazy. Given that we can't yet prove what is going on and that we cannot yet know for sure how many diagnoses are accurate, it is still a perfectly logical assumption to make. But yes at the moment it is just that, an assumption which may or may not turn out to be right or wrong.

As you say, at the minute we can only judge by our experiences. I have had the condition for nearly 20 years and one of my sisters for 30. Between us we have tried all sorts of potential cures. Between us we also know several other people who have the condition and have tried many things. Yes some of us seem to travel the rollercoaster of getting better, then relapsing. But to date neither of us know anyone that has as yet recovered from the condition. That is the experience that informs our opinions and judgements because that is all we have to go on. Doesn't make it right or wrong, just our opinion.

[sulamaye in reply to ukmsmi4]

When they 'discover' what m.e is - assuming there is a singular condition - you may well find out you do not have it. I stand by my crazy statement. I loathe this hierarchy of illness so vehement throughout the m.e community. It's why I avoid the m.e community most of the time, this: I am iller than you, for longer, therefore I am truly ill and your not etc etc is counter productive and pointless. It all proves nothing. We all live in a glass cage, that is as specific as we can get with any diagnosis, when I escape mine it won't mean I never lived in the glass cage. One things for certain if someone thinks there is no recovery there is no point even trying to recover. You don't have experience of petrovic. It seems no one has first hand experience which was what I was asking for. Thanks for your input.

[ukmsmi4 in reply to sulamaye]

Sorry Sulamaye but I think you have misunderstood what I was saying. In fact it seems to me you have just argued exactly the same point I was making. Until science proves one way or the other what is going on none of us will truly know. Yes I absolutely agree it may well turn out that I am also one of the misdiagnosed and in truth I have something else. In a way I hope that's true. In a way I don't really care as long as whatever it is turns out to be curable.

I have not at any point in this thread argued that I am categorically right, only that this is my opinion based on what evidence I have seen or experienced. Surely that is all any of us can do until we are proved right or wrong. And anyway science at best can only ever be what we currently know to be true and frequently turns out to be wrong. The only wrong people are the ones that stick dogmatically to an opinion regardless of the evidence presented to them, providing of course that the evidence cannot be picked to pieces.

We can only ever have opinions and just as you stand by your crazy statement, I stand by my logical one. If I am proved to be wrong I will be happy to admit it, I'm not that blind or stupid or pig-headed. If only because I will at least know the truth if and when that happens. That's all I want.

And by the way I was not claiming that just because we have been ill for longer means we know more about it or that we are more ill. I absolutely agree that would be counter productive. Just that despite the fact we have been ill for that length of time and therefore being in and around the discussions and debates, we have not personally come across anyone who has claimed to be fully recovered. Please don't try and make out that I was saying I'm right and you are wrong. If you re-read what I said you will see I said that is our experience and therefore that is what we base our opinion on. That is not the same as saying therefore this is the case regardless of what you think.

I also never said there is no recovery point, I hope to high heaven there is. I merely said I haven't found it yet, which by the way in itself suggests that it's not for the want of looking.

And no I don't have experience of the treatment which you will find was the first thing I admitted in my reply to Raffs. You then gave me your opinion and I then replied with mine which I am just as entitled to do as you are. If you don't want people to explain what they are saying then don't say things like "perhaps you can see why I am considering it" without expecting them to reply.

I'm sorry I couldn't give you the answer you wanted but as I said, I hope someone does as I too would be interested to know.

[sulamaye in reply to ukmsmi4]

But it seems you are sticking to your experience regardless of my statement of fact that I have now met two people who have made full recoveries after long and embittered battles with their diagnosis of m.e. I don't dispute that you are still ill and have met no one who has recovered, but by dint of logic you are saying that what I say does not convince you that some people with m.e diagnosis can and have made full recoveries. Therefore you do not accept my experience as truth or fact. It is a fact.

[ukmsmi4 in reply to sulamaye]

No that's not what I'm saying. Obviously they were ill and obviously they got better and I'm very glad for them that they did. Yes obviously you are sticking to what you know from your experience, which is all any of us can do.

I'm not saying that anyone with an ME diagnosis has not made a full recovery. Only that we cannot yet prove one way or the other that that ME diagnosis was correct in the first place. Until we can prove it one way or the other for any of us (and of course that could logically include me) then we will never truly know. And that given that it is believed 40% of people are misdiagnosed I can't see what is crazy about assuming that people who recover perhaps didn't have it in the first place. Surely 40% gives a fairly high probability, especially when nowhere near 40% ever claim to recover. It just seems logical to me.

Sorry my posts can be a bit long but sometimes my brain fog makes me waffle on in an effort to try and explain clearly what I'm saying. And yes it can sometimes work against me.

[TheLadyOfShalott in reply to ukmsmi4]

And the recent paper from Norway (Investigation of Suspected Chronic Fatigue Syndrome/Myalgic Encephalopathy) shows even less: That of all the referrals to their clinic, only *13%* of patients actually had M.E, and a whopping 46% of the patients were psychiatric. - tidsskriftet.no/article/344...

[ukmsmi4 in reply to TheLadyOfShalott]

Bearing in mind that Norway treats ME as a psychological condition, I think that study says more about the way they approach the condition over there than anything else.

[TheLadyOfShalott in reply to ukmsmi4]

I agree with that, exemplifies what many still believe CFS/ME to be.

[sulamaye in reply to ukmsmi4]

ps I don't read everything you say it is too long, too much for my brain fog.

[ME65]

Did not get Margaret's very comprehensive post through til I'd tapped in my little offer!!

Best of luck xx