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I originally wrote about starting on this oil-regime here (http://www.thisisms.com/forum/general-d ... 61-15.html) but I think this "natural approach" forum is more suitable for this topic - so I just start by copying my original post here:

I'm now on the full doses of the oil-protocol for more than two weeks which consists of taking 3 tablespoons (split over 3 intakes throughout the day) of organic, cold pressed hemp seed oil together with 1 teaspoon of evening primrose oil per day.
Including my initial phase when I slowly increased the daily intake I started about four weeks ago.

I now feel certain enough to claim that - especially the hemp-oil - has a substantial positive effect on my fatigue.

I used to be moderately constrained by my fatigue due to MS. I had to get AT LEAST 9hrs of nighttime sleep. I had to take naps throughout the day and regularly had to lay down after physical or mental activities because I felt REALLY exhausted - and that has been the case for some years now.

I do still feel tired from time to time now, but that is the usual kind of tiredness thats also experienced by healthy people which can be mitigated by a cup of coffee or a shower - its not (or at least to significantly less degree) the overwhelming exhaustion of MS fatigue.


Of course a placebo effect cant be ruled out, but I didnt expect the hemp-oil to have an effect on my fatigue and the effect is significant - its not just a slight improvement. I notice that I am now able to do things in my daily life that I couldn't have done some weeks ago.

Another possible explanation of my improved fitness might be, that because I was excited about trying out something new and felt somewhat energized I therefor did indeed some more workout and walking and that might have been the real cause of my increased endurance. But to me that also appears rather unlikely because my improved endurance seems to have come about too quick to be due to an exercise effect.

Honestly I currently do believe (and certainly hope) its a real effect of the oil-regime.

--Frank

A small update:
-------------------
Unfortunately I have to say that the previous week did not go so well for me.
I did feel more tired/fatigue again and while I would say that there is still some benefit compared to before the oil regime its far less that the week before.

Two circumstances might explain why things got worse:
1. The weather in Germany got really hot - everyday is over 30°C - and I am used to being sensitive to heat to some extent.
2. I did a "strategic mistake" last week: I over strained my exercise/body-mind capabilities last weekend. I do know from previous experiences that this has bad and longer lasting (exhaustion) consequences for me and I DID intend to avoid overdoing things... but here I did it again .

Hopefully I can report to be in a better condition again next week...

--Frank

Hello Frank. I also started a regime based on this iranian study, with the difference that I have mixed it with another study which you may find interesting:
http://www.ncbi.nlm.nih.gov/pubmed/23599375

I get my hemp oil along with my evening primrose oil from "yourhealthbasket" in the UK (I live in Spain), and am doing quite well since I started (over 3 months now). Then my MS is not going too bad for the moment (first attack in November 2011 with sensory symptoms in my right hand from which I did not fully get over- no more relapses since). Fatigue is not much a problem for me either, but I want to fight back as much as I can- with natural remedies only for the moment (I am on no DMD for the moment- my neuro preferred to wait)

May I ask where do you buy your hemp seed oil?

Hi Rayboy,

thanks for the link to that interesting study.
The results look quite promising but on the other hand, the fact that only 51% of the patients completed the trial raises some serious questions about the statistical reliably.

Unfortunately the abstract does not mentioned what kinds of oils and what doses they use in their regimes (it just says what kinds of fatty acid at what ratios are chosen).
What/how much do you use?

I currently get both oils from amazon.de:
Hemp oil:
http://www.amazon.de/gp/product/B001JFJWMM
Evening primrose oil:
http://www.amazon.de/gp/product/B000FS9UZI

Thanks
--Frank

Well, it is true that in the Cyprus clinical trial compliance was poor (41 people out of the 80 enrolled as you mention), but then the p-values obtained for the outcome measures (Annualized Relapse Rate and progression of disease over the 3 years) were good for the studied "PLP" arm (the one combining omega-3, -6 and vitamin E): relapse rate went down from 1.0 to 0.4 on the 9 people who did finish the trial and progression was reduced significatively.

Now there is a clinical trial which just started, a multi-center, phase IIIa, placebo-controlled trial which will enroll 200 people across the UK and Cyprus (it is called "mineral" trial, I attach link hereafter):
http://controlled-trials.com/ISRCTN06166891

I do take only by lunchtime 1 soup spoon of hemp oil (about 9g), along with 2g EPA+DHA and 1.5g of evening primrose oil, as well as a 400g gamma-tocopherol capsule. I did an excel sheet to compare the values I take compared to both the iranian and cyprus trials and more or less I am taking 50% of both tested regimes. I know it is not exactly the same thing, and mixing tested regimes might not be very effective, but then I am adding other 15 different supplements (I am on no "official" DMD), and my MS is not doing very bad either. In October I will have a new MRI test done and then will see how I'm doing compared to my baseline MRI.

By the way, I did contact the leading person for the clinical trial in Cyprus (to try to buy the PLP syrup myself while it is being tested), and he told me this is impossible, but results will be very good on the IIIa trial.

Thanks for the link to the phase IIIa trial - its very encouraging and pleasing to see that they are really advancing a natural and easily affordable treatment.

Regarding some statements of your post:
-----------------------------------------------------
What did the leading trial investigator mean when he said that:

but results will be very good on the IIIa trial.

a) he is HOPEFUL/CONFIDENT that the end-results - after the trial will be completed in 2016 - will be very good. Which might be nice to hear but does not have any legitimate bearing/foundation.
b) he already has an insight into some interim results of the IIIa trial and they are already looking good. That should be impossible because the trial has just started and its double-blind so nobody is supposed to know how things are going until the trial is completed.


The p-value of the completed trial might look good for the PLP arm but the p-value is just a null-hypothesis test. Which means that it tells you that GIVEN the results of that study-arm, how likely would it be that there is NO underlying causal connection between the treatment and the outcome.
So its just a mathematical construct regarding the acquired data but that does not by its nature take into account how scientifically legitimate/good the study was done.

The high dropout rates would give a possibility to greatly bias/manipulate the result - I'm not saying that the results are actually made up, just that its one possible interpretation.
And because such enormously high drop out rates are very unusual and certainly not to be expected with a natural treatment I do think one needs a very good explanation why so many people left the trial.

If you are doing a none blinded study of a treatment and 50% of the patient are doing very well, while the other 50% are doing pretty poor you "just" try to get rid of as many of the the 50% of the non-responding patients as possible and thereby you raise the efficiency levels greatly.
When you do the statistical analysis, as if the dropped-out patients had never been in that study you get fantastic efficacy and very convincing p-values.
The reason why some patients "respond" to the studied treatment may be
a) the substance only works for some patients but not for others
b) the substance might be completely inefficient but the natural course of the disease (MS in our case) is by its nature diverse, so that some patients get better with time regarding ARR and EDSS and some get worse.


Regarding your regime, are you taking the 2g EPA+DHA as isolated supplements? As compared to for example salmon oil capsules?

Thanks
--Frank

Update:

After my being worse the last time I posted it took me a week or so to recover.
Now I to do well again. Its not that I would get better and better and better, its just that I am confident that I feel better with the oil regime compared to the time before I used it.
I'm still not sure whether its really the oil or just the fact that I do more exercise now that I feel better.

What I did was - after I checked that with my neuro - to ask four (two with MS, two healthy) persons in my circle of acquaintances to give the oil regime a try.
After a week two of them (the two healthy people) say that they also tend to feel improved vigilance - nothing dramatic but some noticeable effect...

--Frank

Update:

I dont have anything too exiting to report, I just wanted to state that I'm still using the oil-regime and doing still fine but nothing special happened since my last posting...

--Frank

Thanks for keeping us posted x

Update:

I'm still on the regime but unfortunately I have to say that I feel that I have lost most of the benefits I experienced at the beginning.
Why? I'm not sure.
First its usual for me to feel better in spring and summer and now autumn is here.
Second I had to give up swimming due to some orthopedic issues .
Third it might have been some placebo effect that diminished over time.

But anyway I am going to stay on the protocol for at least until early 2014.

--Frank

Shame you feel you have lost the benefits, thanks for keeping us updated though.
Hopefully it might slow progression or something

Hello Frank: Swimming enhances blood/fluid circulation through the brain, oxygen delivery etc. (CCSVI) It helps me enormously and my health is always better during the summer when I swim regularly. Tens Acupressure self help might help replace the loss of swimming as it has me. So if you are feeling worse, consider that you have stopped swimming.
ms cure enigmas.net

Update - final verdict:

I have been on the oil-regime for 6 month now and unfortunately I have to say that I can not report any certain MS benefits - not to mention any significant EDSS improvement.
But at least there has not been a relapse or significant deterioration in my MS status.
There have been no side-effects for me though the taste of the oils got a bit annoying with time but that would have been easily tolerable had I seen MS improvements.
I am now going to stop taking the oils.

--Frank

@vesta: I am also very confident that swimming is good for my overall health and well-being and it also improves some of my MS symptoms to some extend. Its really sad I had to stop it due to my bad ankle .

Sorry to hear that, Frank. I still continue to take it, along with the other regime from the Cyprus trial. I'm doing fine, but as I said I'm at the beginning of the MS journey (2 years diagnosed now).

Hello Frank: Since you find swimming helpful (I believe it stimulates blood/cerebrospinal fluid through the brain - CCSVI principle) check out other self help options here on my post "CCSVI: Three Treatment Options". (You can find the same blog post on my site MS Cure Enigmas.net.) For example, one can do Tens Acupressure Self Help. That way it is possible to stimulate the fluids circulation without swimming or injuring your ankle. (Serena just asked for clarification of the treatment Under General Discussion.) Best wishes for the Holiday Season, Vesta