NICE guideline publication – Cannabis... - Fibromyalgia Acti...

Fibromyalgia Action UK

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NICE guideline publication – Cannabis-based medicinal products

desquinn
desquinnAdministrator

Just to inform you that NICE have published their guideline on cannabis-based medicinal products. These can be found here: nice.org.uk/guidance/ng144

We are very pleased to see that fibromyalgia has been explicitly mentioned as the first key recommendation for research, quoted as follows:

more info here: fmauk.org/latest-news-mainm...

14 Replies
desquinn
desquinnAdministrator

ty - copying to multiple channels and they behave differently :(

When they say 'cannabis based products' will this be with or without thc? Good CBD products are widely available already but have little effect on those who have previously been prescribed high doses of opiates.

Speaking from experiences with David

x

desquinn
desquinnAdministrator in reply to Bananas5

no this is cannabis medicines. So, CBD oil (i.e. without any THC) was not part of their consideration. It is lacking in research also and is currently regulated only as a food additive.

Great post ! :)

desquinn
desquinnAdministrator

Its the lack of evidence that is the issue. They can only give an opinion on the trial data they have in front of them so if that is lacking then the evidence will be as well. They were open to research on CBD hence the clinical trial comment. But having a 4% benefit is not good enough for a recommendation.

But where there is evidence (such as it is), it is more likely that cannabis based meds have promise and also I feel the initial scoping was more towards cannabis medicine.

We cannot rule out placebo effect or any other number of factors in uncontrolled use. For example people have found benefit in the "H&B rubbish" :) I am more concerned personally with the non response rate and unreported side effects or contraindications whether from the "treatment" or the application i.e. vaping.

This movement from NICE is in the right direction but there is more miles to travel before we can be sure it may help people generally and people with fibro specifically. Is it just a subset for example - for most prescribed drugs in fibro we are looking at a 35% positive response rate with an effective treatment return. We need numbers above the 30% rate at a minimum and arguably greater due to the societal bias in effect against cannabis or abuse vectors.

Hidden
Hidden

I will gladly volunteer to be a guinea pig if they want any “testers!”

I got a good one from mainland Spain as we live in the Canaries. Tried low strength building up to higher strength but nothing I'm afraid. After 35 years of chronic pain David has an ology in meds etc. I won't say what he uses now as it is against HU rules

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desquinn
desquinnAdministrator in reply to Bananas5

this is why we need proper research. If the sample cohort is predominantly people that have had long term exposure to opioids or other meds then they may react differently to people that have not.

Bananas5
Bananas5 in reply to desquinn

If only these researchers could ask those who have tried and tested it. As you know we have all types of cannabis products here where we live and I know those who take it recreationally only-and others for long term conditions like David. The benefits of taking it, for just about all chronic conditions, are quite obvious to anyone.

But of course that doesn't benefit the huge pharmaceutical giants.

We fight on

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It is very positive.A step in the right direction. The drop down box in the guidelines mentions the cost effectiveness, compared to the benefits. So, even with positive results from future research, do you think it will be available on the NHS for people who suffer with Fibro.

Great news please let them look at how much this can and dose help people what is worse morphine or cannabis ?

I am currently trying CBD but have not found it effective for pain relief yet. Although I have scope to increase the % of CBD still. I try to manage my symptoms holistically as recommended by my GP. It costs me a fortune!! I have to be honest I was a bit disappointed with the report. As I would like them to do research not just with CBD but with different ratios of CBD to THC. Because after reading many articles I believe that CBD alone doesn’t have anywhere near the pain relieving power as a medication with both CBD & THC. I know someone (UK) who uses cannabis (although he has to acquire it illegally and therefore doesn’t always know what ratio of CBD to THC he’s getting). But he has tried functioning with it and without it. And he said he has less flares when on it, sleeps better which in turn helps reduce his fibro symptoms, and cannot function effectively without it. Do you think they’ll look at American research as they have been using it over there for a while now? There is also interesting research coming out of Israel. Although much of this is around cannabis and autism.

Kinda disappointing. Hoped to see it's use in Crohn's by now. These guys are desperate.

With fibro its not just pain, but all the rest of symptoms including tummy ones. there is anecdotal evidence cannabis helps tummies.

desquinn
desquinnAdministrator in reply to Al10

I agree we should be further on in research with this but this is opening the door further to research.

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