Skin up!

[struan80]

My 12 year old son Max is very shortly (hopefully) going to be one of the first minors in the UK to trial a Cannabis based drug. It's been a long hard push I tell you!

Edit: He has Lennox Gastaut Syndrome. Pretty debilitating form of epilepsy. He cannot speak or make any sounds anymore, needs fed, still in nappies, stumbles around like a drunk man on a good day when he's actually able to be mobile. On a bad day basically drooling vegetable. He has been declining slowly and steadily over the years.

A snippet from a previous press release for info.
https://www.edinburghnews.scotsman.com/news/health/uk-trial-for-cannabis-epilepsy-treatment-1-3636486. Was also in Times, Daily Mail at that time.

Amazes me how my son can get fed Ketomine and many other prescribed drugs that are slowly fucking him up right up, way more than some CBD ever would, at will, without a thought, to get him out of his status. Now this CBD may not work or do anything.......but for fuck sake my lad has suffered for 12 years it's got to be worth a shot.........hurry up and let us try you fucking twats! Had almost miraculous happenings in some similar conditioned children in the states, not all, but surprisingly many.

This Epidiolex trials are currently being held up by ethics committee bureaucracy. I hope the ethics ensemble are having nice long lunch breaks and Friday afternoons off while they ponder this.

What are peoples thoughts on this? Because I have yet to hear anyone put even a slightly palatable argument against this. So begs the question, where is the resistance coming from?

Wee bugger still cannae roll a spliff right yet mind, but I'm working on it...... (Unfortunately this sort of perception exists still)

And to make this relevant to bikes, if this CBD/THT has any positive effect I will buy a new bike

[Commuter_Tim]

https://www.edinburghnews.scotsman.com/news/health/uk-trial-for-cannabis-epilepsy-treatment-1-3636486

Lose the . fella. (Or possibly the feminine alternative to fella ..fella'ess?)
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The above post is most likely nonsensical.

I ride a Bandit 600... badly.

[Ste]

Best of luck with it all.

It raises the question of if the trail is a success, he will have to go back to the drugs he's currently on? Or would it work along the same lines as Sativex in that it can be prescribed off label and would be funded if your local NHS primary care trust agreed?

[Tracey Suntan-King]

It must be very frustrating having to wait, ethics committees are always so very slow.

Someone should convene an ethics committee to examine the ethics of being so bloody slow, when expectations of patients and carers have been raised.

Anyway good luck with it all.

I hope Max gets the benefits he needs and that you hope for.
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Whether you think you can, or think you can't, you're probably right

[BigShow]

Good luck! If they found any other plant that had positive medicinal effects they'd be all over it, but because it's cannabis they are dragging their heels and being shitty. Even if it means people aren't getting treated.

Do they already use this anywhere in the world to treat it?

[Clanger]

[Bubbs]

Best of luck.

Please keep us in the loop with goings on, I'm really interested to find out the results of this.

Seen a lot of positive results from CBD in documentaries.
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Life begins at the end of your comfort zone.

[oldpink]

lots of groups out there supporting & supplying patients with oil high in CBD for treating such cases
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I have become comfortably numb

Theory & hazard 24-may 2016, CBT 8th June 2016, MOD 1 2nd Aug 2016 Mod 2 2nd-Nov 2016 - Current bike CBR 600 RR

[Andy C]

Best of luck, heard a lot of great success for epilepsy with CBD.

I think people do not realise the reason that cannabis has become "super strong" is that THC has been the main target and not having strains that have more of a balance in CBD and THC. For me it proves how damaging prohibition has been as between high THC strains and synthetic cannabis, has done a lot more damage to people.

Keep us updated!
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99 RS125 --> 02 SV650s --> 03 Speed Four --> 92 RXS100 --> 93 CB400sf --> 01 CB600f Hornet

[Pigeon]

This country does many things right. But having to look at everything politically is a blight.
Political Will completely dictates the speed of change unfortunately.

Best of luck, hope it works out well!

[dydey90]

[-Matt-]

Hope you all get good results from it Interested to hear about any updates.

[struan80]

[struan80]

And another one bites the dust.

https://www.khou.com/story/news/local/texas/2015/06/01/abbott-signs-bill-to-legalize-medical-cannabis-for-epilepsy/28322209/.

This is a huge deal for us. Texas is a rather prominent state with a 'staunch conservative' signing this.

[Ste]

Epidiolex is produced by GW Pharmaceuticals who also make another cannabis based drug called Sativex. It's produced under license in this country, plenty of tax is paid by GW Pharmaceuticals but it's not licensed for use in this country.

Getting it prescribed is very much a postcode lottery as first you've got to find a doctor willing to prescribe it off label and then your local NHS trust has to be willing to fund it, that's the problematic part as there's no consistency or logic applied to who does or doesn't get it.

I'd be surprised if getting it prescribed post trial is as straight forward as it should be or if it's even possible at all. I'm wanting to sound negative with this but I'd be (pleased and) surprised if it's treated any differently to Sativex.

Further to what oldpink says about groups involved with providing medical pot to needy people, there are many many scammer targeting the same market.

[oldpink]

[Ste]

[oldpink]

[struan80]

[oldpink]

[struan80]

[oldpink]

growing cannabis is easy but as you say its all down to the strain the works best in your case
if I can ever help drop me a PM I have access to thousands of strains

another case here that may give you hope

cannabis helps 3 year old girl

[oldpink]

another step forward

[GhostRider]

A lot of it is to do with terrible drug laws - since cannabis is classed as a schedule 1 drug it officially is deemed to have no medicinal benefit and requires a home office licence to even research it, which means it is made virtually impossible - see Prof David Nutts summary on his experience trying to research LSD/Psilocybin, and makes mention of Sativex - the fact that it is schedule 4 (prescription) despite being pharmaceutically identical to plant derived cannabis).

https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.1002047

Politics basically, which in turn is fuelled and funded in large part by the drinks industry, so they have a large say in dictating policy. So as well as no politician having the balls to put forth a sensible agenda, they'd be ignored/suicided anyway as they'd be hurting other MPs backhanders.

I wish you the best of luck, I've seen some inspiring clips from various documentaries, hopefully it proves to be a miracle drug for your boy too

GhostRider
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I have all the characteristics of a human being: blood, flesh, skin, hair; but not a single, clear, identifiable emotion, except for greed and disgust. Something horrible is happening inside of me and I don't know why. My nightly bloodlust has overflown into my days. I feel lethal, on the verge of frenzy. I think my mask of sanity is about to slip.

[struan80]

Update.

Got this today from our man. Good news it is going to happen soon. Will report when any further news.

Dr Richard Chin of Muir Maxwell epilepsy centre deserves a lot of credit for pushing this for years. We met him by accident, so glad we did.

From: CHIN Richard < rchin@exseed.ed.ac.uk>
Date: 27 July 2015 12:30:04 BST
To: Lorraine ROBERTSON < lorrainerobertson2002@yahoo.co.uk>
Subject: Re: Max Robertson

Dear Lorraine and Struan

Hope that you are well. I am just back in office and finally, ethics approval is now in place (hurrah) and we are going through the local necessary R&D approvals; I am trying to drive this though as quickly as possible. We have a site initiation visit planned early August so we should be able to start recruiting by late August/Early Sept. I do hope that you are still keen for Max to be in the study.



Richard