NICE guideline publication – Cannabis-based medicinal products

Just to inform you that NICE have published their guideline on cannabis-based medicinal products. These can be found here: https://www.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:

1 Fibromyalgia or persistent treatment-resistant neuropathic pain in adults

For adults with fibromyalgia or persistent treatment-resistant neuropathic pain, what is the clinical and cost effectiveness of cannabidiol (CBD), containing no, or traces of, delta-9-tetrahydrocannabinol (THC), as an add-on to standard treatment?

To find out why the committee made the research recommendation on fibromyalgia or persistent treatment-resistant neuropathic pain in adults see rationale and impact.

Rationale and impact
People who have fibromyalgia or persistent treatment-resistant neuropathic pain are often taking high doses of medicines for pain relief over long periods. These can cause nausea, drowsiness, mood disturbance and fatigue. The committee noted that this is a significant population of people with chronic pain (around 15%). They therefore made a research recommendation for CBD in adults with fibromyalgia or treatment-resistant neuropathic pain.

No doubt that Fibromyalgia Actions contributions during the scoping stage contributed to this. We believe it is a positive step for us to see that they’ve acknowledged the importance of work in this area. Our expectations are still realistic, and evidence will take time. We will be supporting future initiatives for this research and projects like ProjectTwenty21.

Gudrun Berry: My experience with fibromyalgia

I was always a very active and busy member of the community, having no problems multi-tasking and juggling various things.

I was less and less able to function and fulfil my work requirements.  The process took over one year and ended with a disciplinary hearing, where I was told in no uncertain terms that there are only two ways:  either I'm ill and then need to be signed off work or I'm not ill and have to do my work as required.  My GP was very helpful and also the Occupational doctor from the HR department.

It has taken me several years to come to terms with the slow pace of life and the narrowing of activities.  After several operations because of my arthritis I am now content with my life, trying to manage my pain without medication.  I live for the moment and have accepted the changes in my life.  Having more time and doing things slowly and more aware has changed me profoundly.  I had to re-evaluate the priorities in my life and despite the restrictions and the pain, I have never been more content and fulfilled.

Although it has been a cruel and draining journey it has enabled me to turn my life around and lead it in a more meaningful and happier way. 

New office and charity update

First of all, I would like to share with you the news the charity is moving into a new office. Over the last year the charities staff has grown by 100% and the current office was feeling a bit cramped. Our new office is just across the hall and is over twice the size that we currently have. It will allow us to grow the team and have space to carry out in house training amongst other activities.

Our new office layout is coming together but it will take time over the coming months to settle into our new home. This change has been a long time coming and is only possible due to the dedication of volunteers, fundraisers and our staff team. Without their dedication we would not be able to plan for the future.

It is great to be able to share this news as often we have projects on the go that we are not able to share or opportunities that take longer than expected. The charity is always moving forward and it’s a pleasure to share positive news like this.

Read more...

Office Move

Please Note: From 22nd October our head office will be based at Studio 3006, Mile End Mill, Paisley, PA1 1JS. We will no longer be in Studio 3007. 

A look back at awareness week 2019

Awareness week has ended, and we’ve now got the chance to look back on what was a busy week for the charity.

This year, we used our social media platforms to post a lot of content to increase awareness of both fibromyalgia and the charity. We collected several case studies from people, and had posted photos of them highlighting our BecomeFibroAware campaign. These were generally well received and we’d like to thank Emily, Kayleigh, Stephen and Chloe for taking part in this. Emily, also submitted her own video which highlighted her experience of fibromyalgia and provided an in-depth description of the condition to try and make more people aware of it.

Read more...

Stephen Bailey: Why I want to raise awareness

I want to support FMA UK because this is a really chronic condition that causes pain all over the body. It affects so many people from Lady Gaga to my mum. And that's the reason for my support and wanting to raise awareness. Personally, it doesn't affect me but when it flares up, it really effects my mum. She can't sleep with the pain and it makes her sick. It seems to be one of the few things that isn't discussed and from what I understand is that it is hard to diagnosis. It feels like it needs a little more awareness and support in the hopes of one day if not curing it, there can be some form of medication that can really put it in its place