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Cannabis and ME/CFS

charles shepherd

Senior Member
Messages
2,239
Cannabis should be legalised for medical use - new report from an All Party Parliamentary Group on Drug Policy Reform

BBC report:
http://www.bbc.co.uk/news/health-37336678

Dr Charles Shepherd comments:

This is a useful and interesting new report from the APPG on Drug Policy Reform

We already know from feedback and discussions on MEA Facebook that a small but significant number of people with ME/CFS use cannabis to help relieve pain and some other symptoms of ME/CFS

As with other people who use cannabis purely for medicinal reasons, they risk being prosecuted for breaking the law in relation to illegal possession of this drug

The report from the APPG has once again confirmed that there is sound scientific evidence to support the use of cannabis for certain medicinal purposes and that serious consideration should now be given to allowing doctors to prescribe it for certain conditions - as already happens in some other countries

Further research into the use of cannabis in pain - especially nerve/neuropathic pain, spasticity, nausea, anxiety also needs to be carried out. But this is being held back by the current government classification of cannabis as being of no medical benefit

In relation to ME/CFS, the main symptom where cannabis appears to be helpful in some circumstances is pain. However, other people report that it can be helpful in reducing nausea and/or anxiety

As the APPG report correctly highlights, this is a drug that can also have side-effects - including impaired ability to drive, an adverse effect on lung function and long term use increasing the risk of schizophrenia. In relation to ME/CFS, it is important to note that there is also the possibility that it could have an adverse effect on cognitive function (memory, concentration, attention span).

In addition, the use of cannabis 'off the streets' means that users cannot be certain about the chemical content of the product they are using - adding further weight to the call for it to be legalised and properly controlled for medicinal purposes

If you use cannabis, or have previous experience of using it in the management of ME/CFS, please contribute to our discussion on MEA Facebook
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
the pollution of street drugs with all kinds of dangerous materials is very serious and IMHO will probably be one reason why mental health problems will be exacerbated in some people

the toxic synergistic combinations of chemicals are very, very poorly understood or researched
if you are using this herb who's main drug is THC, but the material is cut with *plastic* (really goes on, see below!), you will have very nasty mix of other chemicals some of which could be a pretty toxic and thus create a very harmful "witches brew"

for example in my area, hash was found to have amongst other things used to "cut" it, chopped up black bin bags and vinyl!

personally I'd love to try hash in food to help with pain, as the pain is pretty damn bad nowadays, but conventional pain killers aren't so great, they do reduced it but not as much as they do for normal problems I had before I got M.E.
I'm guessing the way M.E. seems to be a "neurological feedback" it "amplifies" pains signals and perhaps distorts normal sensory feedback into pain signals? so pain killers normal method of working isn't so effective.

Smoking is *not* a good idea, hence the proverbial "hash cakes" would seem safest method of easy use not relying on tablet form/industrial manufacture and thus would keep costs down. it doesn't really need to be processed, just regulated for quality and to make sure growers do NOT use insecticides!
 
Messages
1,055
@charles shepherd You may find people like me are happier to comment here under the anonymity of their user names rather than on Facebook using their real names!

I've had moderate ME for 6 1/2 years and sleep dysfunction is a major symptom; initiating sleep has been eased by prescription meds and sleep hygiene, but nothing has helped maintain my sleep except cannabis. For the first 2 1/2 years I woke from every REM phase of sleep and struggled to get back to sleep again, I was waking up about 9 times a night.
In desperation I tried a small hash brownie with my night time meds and it worked. I sometimes wake from dreaming once or twice in the night now, mostly in the week before my period, but can usually go straight back to sleep again.
I was very worried it would make my brain fog worse during the day, but the improved sleep has eased my head fog.
If I haven't initiated sleep before the brownie kicks in my thought patterns can become very negative and a little paranoid, so I wouldn't want to use it during the day.
I'm unable to drive now so can't comment on that.
I understand that some strains of cannabis plant have different effects, I'd prefer one that didn't have induce paranoia but did stop me waking from vivid dreams.
 
Messages
2,158
I understand the medicine Sativex which is derived from cannabis can be legally prescribed in the UK for MS. I wonder whether the first step for ME sufferers would be to ask if the medical use could be widened to ME? Perhaps we should ask for a medical trial?
 

charles shepherd

Senior Member
Messages
2,239
I understand the medicine Sativex which is derived from cannabis can be legally prescribed in the UK for MS. I wonder whether the first step for ME sufferers would be to ask if the medical use could be widened to ME? Perhaps we should ask for a medical trial?

Yes, Sativex is licensed here in the UK for the treatment of spasticity in MS where other forms of treatment have not been of benefit

This is an intreating product:

http://www.nhs.uk/ipgmedia/national/multiple sclerosis trust/assets/sativex.pdf
 

wastwater

Senior Member
Messages
1,271
Location
uk
I cannot even be around it,it makes me very unwell,I'm more interested in the non psychoactive form.
 
Messages
2,158
Yes, Sativex is licensed here in the UK for the treatment of spasticity in MS where other forms of treatment have not been of benefit

This is an intreating product:

http://www.nhs.uk/ipgmedia/national/multiple sclerosis trust/assets/sativex.pdf

Thanks for this Charles, the information on Sativex is very interesting.

I wonder why it's only allowed to be tried if other drugs have serious side effects, not as first drug of choice. Would it be just because it's derived from an illegal substance, I wonder. And I note patients can only get it for spasticity symptoms, even though it was also found to be effective for pain.

Maybe one day when cannabis is legalised for more general medical use, we'll be able to find out. In the meantime, I'm too scared of being deported (I'm Australian resident in the UK) to even consider trying cannabis.
 

eafw

Senior Member
Messages
936
Location
UK
I would like to see cannabis legalised, the worry is always standardisation even if home-grown or bought from an approved (ie non-contaminated) outlet.

Sativex or something similar should be part of the solution here - can't GPs and consultants in the UK prescribe off-label nowadays? - and for people who can't tolerate the THC component, THC free or CBD(*) only would be nice for the muscle spasms and pain.

(*) I understand CBD oil is sold legally but not sure whether it has enough active ingredient to make a difference
 

eafw

Senior Member
Messages
936
Location
UK

flybro

Senior Member
Messages
706
Location
pluto
Fairly sure I would have topped myself, with-out it!
Muscle relaxation, more mobility, better sleep, improved appetite and dampens nausea.
Also seems to make breathing easier!! I think it's because my rib cage is able to relax or stretch more easily.
Less skin/sensitivity, crawling feeling, less spasms. Easier getting and giving hugs!


I've more recently tried this https://medipen.co/ they filter out the THC(the psycho active bit) and keep the Cannabinoids, which are the bits that work more on pain.

There's a quite a lot of info on site, I found it useful recently visiting family, a huge benefit of this is it doesn't smell, and it's legal! However not cheap, but lasts for ages.
 

flybro

Senior Member
Messages
706
Location
pluto
Is it legal in the UK, and has it been tested in any sort of medical trial? Any info on safety issues? Sounds too good to be true?

Yep Legal in the UK, and not sure about studies/research, but there's a fair amount of info on site, maybe worth contacting them and asking.

Personal experience is it's pretty good, no where near as good as early cropped weed though. However I imagine for someone that hasn't been a regular with weed this would be a godsend. It's also a lot less fiddly and finicky than the vape things.
 

undiagnosed

Senior Member
Messages
246
Location
United States
Another option is darknet markets. I'm not sure what the possession laws are in the UK, but where I am in the US they are very minor for the first few offenses. Regarding quality, you can find products such as those manufactured by companies like Bhang in legal states that people will sell to anyone. These products are lab tested for residuals and microbes. The products such as THC/CBD mouth spray and THC/CBD vaporizer cartridges are in sealed packages from the manufacturer, so in combination with the seller reviews, there is a good degree of confidence that the product is safe.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I'd be very careful with smoking weed 'Maaan' if it was legalized and you had severe ME CFS.

Cannabis in susceptible people can trigger psychosis, even from brief use.

Redlabs in Belgium , do a cannibioid receptor gene test (CBR1 + 2).

I can't say what the test result would mean for any adverse psychotic reaction though, maybe none, and that's the problem when you have a neurological disease, that can already induce neuropsychiatric symptoms.

Personally, I wouldn't play with fire if you already have episodes of paranoia, severe anxiety etc (from brain inflammation).
 

undiagnosed

Senior Member
Messages
246
Location
United States
I'd be very careful with smoking weed 'Maaan' if it was legalized and you had severe ME CFS.

Cannabis in susceptible people can trigger psychosis, even from brief use.

Redlabs in Belgium , do a cannibioid receptor gene test (CBR1 + 2).

I can't say what the test result would mean for any adverse psychotic reaction though, maybe none, and that's the problem when you have a neurological disease, that can already induce neuropsychiatric symptoms.

Personally, I wouldn't play with fire if you already have episodes of paranoia, severe anxiety etc (from brain inflammation).

Yeah, well, that's just, like, your opinion, man.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Yea, but dude, I'm just looking out for the fellow surfers in here. :cool:

Seriously, of course I'm biased as I'm cautious in 'natural' herbs, if (by bad luck) in our disease we are super sensitive to it.

Naturally, adults are free to do what they want if it's legalized, we just seem to all have very bad luck!
 

undiagnosed

Senior Member
Messages
246
Location
United States
Yea, but dude, I'm just looking out for the fellow surfers in here. :cool:

Seriously, of course I'm biased as I'm cautious in 'natural' herbs, if (by bad luck) in our disease we are super sensitive to it.

Naturally, adults are free to do what they want if it's legalized, we just seem to all have very bad luck!

The first sentence in your original comment came across as stigmatizing cannabis use. Maybe it was meant to be humorous and I misread it. In any case, cannabis use does improve the quality of life for a lot of people. It's true there are potential side effects and people should be aware of these to make an informed decision.