Cannabis and other 'alternatives'

But do fringe treatments work?

When you have a long-term condition which can only be ameliorated, not cured, by drugs which can have unpleasant side-effects, you are an eager audience for any innovative treatment. People with Parkinson’s are impatient for anything that may offer hope of improvements in their condition and when they latch on to some alternative treatment they are eager to share it with the community.

In the last week I’ve hosted a couple of online events - one about technology which might help people with Parkinson’s, the other an “Ask Your Pharmacist” webinar where people had submitted questions about their medication. In both cases, many people wanted to inquire about or advocate alternative or novel treatments.

I’m going to go through some of the most popular of these ideas and try to work out what the evidence is for their effectiveness. I start as somebody who is wary when words like “alternative” or “natural” are tacked on to the front of “medicine” but I do try to be open-minded.

Cannabis

Cannabis or rather cannabidiol (CBD) and other derivatives of what in its pure form is still a banned drug is currently the most fashionable new treatment for a whole range of conditions including Parkinson’s. A number of people at the Ask Your Pharmacist event wanted to know about using CBD, and a major supplier of medical cannabis got in touch with me recently to tell me that it had just received a £3 million investment and was “excited about the potential that this treatment has to alleviate the symptoms” of Parkinson’s.

Well, they may be excited but the NHS says CBD can only be prescribed for a very limited set of conditions such as helping people with Multiple Sclerosis who have muscle spasms and they don’t include Parkinson’s. So far, the evidence of the effectiveness of medical cannabis in treating pain is pretty sketchy - the case for and against it is well summed up in this 2017 blog from the research team at Parkinson’s UK. In short, there have been some promising results in lab tests but no clinical trials of any scale.

Five years on, not much has changed - though the charity has funded a trial designed to find out whether CBD can help people with Parkinson’s suffering from hallucinations and delusions. But to give you an idea of how long these things take, Stage 1 of the trial involving 24 people began in 2019 and is now complete, while work has yet to start on enrolling the 120 people who will take part in Stage 2.

Parkinson’s UK has the following advice:

“We would encourage anyone with Parkinson’s who is considering using cannabis for their symptoms to discuss all the implications with their GP or specialist before making a decision, and also to consider the legal implications: cannabis is a class-B controlled drug in the UK, meaning possessing, producing and supplying it are all against the law.”

Vitamin supplements

There seems to be quite a lot of momentum behind the idea that certain vitamins can have a positive effect on the symptoms of Parkinson’s. The most popular is vitamin B1 or Thiamine - someone sent me a whole book about its merits as a treatment.

On the Ask Your Pharmacist webinar the panel was asked whether taking 1600mg of vitamin B1 a day was a good idea. Community Pharmacist Stephanie Bancroft did not seem convinced:”There have been no clinical trials or evidence that vitamin B1, especially at that very high dose, improves symptoms. If you wanted to take vitamin B1, you should start with a low dose anyway.”

The pharmacists also warned that vitamins could affect the absorption of Parkinson’s drugs like Sinemet and they should be taken at least two hours before or after them.

As. with cannabis, while researchers have found some indications from lab tests that vitamin supplements could prove beneficial, there just have not been the kind of clinical trials which are needed to convince doctors that they should recommend them. Reading this blog by the Parkinson’s UK research team describing one trial involving just three people, another where there was no control group taking a placebo, makes me wonder just how long it will be before we learn the truth about vitamins.

Gadgets

After my webinar on technology and Parkinson’s I received several recommendations of gadgets that might be worth trying. One was the Eye Guide MC, developed by Sandra McDonough who had been diagnosed with Parkinson’s nearly twenty years ago. This device, which looks like a Bluetooth earpiece but has no batteries or wires, is said to improve symptoms such as tremors, halting speech and jerky movement.

One woman wrote to me that she’d met someone with the Eye Guide: “She’d not had it long but said it made a big difference to her, and her friends and family all commented how much better she was. The price tag was the equivalent of a family holiday, but she felt it was worth it.”

She’s right about the price - I was taken aback when I visited the Eye Guide website and found that it cost £995 plus VAT. The site says it’s been given a CE mark to show it’s safe - not surprising when it is a non-invasive device with no electrical power. So what is the evidence that it works? Apart from the usual testimonials from happy customers, nothing that would convince the National Institute for Clinical Excellence, NICE, to endorse it.

The manufacturers say they’ve received advice from Parkinson’s UK but they “do not formally endorse the product as it is still at an early stage of development, but they are keen to follow its progress.” The charity seems to be walking a careful line, wishing to encourage innovations like this without lending its name to something which is still unproven.

As I wrote recently, I am trying out another gadget the Cue-1. This too is yet to be validated by a large-scale clinical trial, though it does at least have some science behind it. So far, I can’t say the device has transformed my life, but then again my Parkinson’s symptoms are relatively mild so I’m also never quite sure the drugs I take are making a big difference.

The truth is that there is not substantial evidence that any of these alternative treatments is really effective. And even in the event that somehow the funds are found for the kind of large scale clinical trial which might provide proof, cannabis, vitamins and any number of gadgets are really just a sideshow. At best, they are likely to give temporary relief from some symptoms for some people.

The main event is the search for a drug which can halt or even reverse Parkinson’s but this is proving such a long and costly saga that it is little wonder that we seek out some distractions while we wait.