New article on BBC website about ME

Today the BBC have published an article about ME and it’s effects. Specifically it talks about Jennifer Brea and the documentary called ‘Unrest’ that she made about her experiences of living with ME in which she also interviews other sufferers.

Please use the link below to read the full article:

4 days until the first NKMEFF Music Quiz!

We’re so excited (and nervous!) that it’s only 4 days until our first fundraising music quiz. Everyone has been working really hard to make sure things will run as smoothly as possible.

We’ve got a great selection of prizes for the raffle so don’t forget to bring some extra change! Bring your own drinks and nibbles, for the drivers we’ll be able to supply the hot water for teas and coffees but bring your own tea bags etc!

It’s sure to be a great evening and we hope that this will become an annual event. All of the tickets are sold out unfortunately but keep an eye on the website to find out about next year’s music quiz!

Katie to take over organising Socials!

Hi everyone,

As of January 2018 I will be in charge of organising the group’s socials. Emma and Jon have done a fantastic job so far, I hope I can adequately fill their shoes!

If you have any ideas of ME and Fibro friendly activities that the group could do as a social please do let me know, I’m open to ideas! I’d like to do another Playopolis social as that always seems popular and I think it’s our intention to make the quiz night and annual event!

So watch this space 🙂

Katie x


National Fibromyalgia Awareness Week 3-10 September

An insight into living with Fibromyalgia from one of our members, Alison Temple:

I will be real and honest about how Fibromyalgia affects your life. These are just a few personal examples….sometimes it’s too painful and exhausting to wash and dry my hair, I find socialising with lots of people too much, I can’t tolerate alcohol, shopping is so tiring, standing and sitting too long causes fatigue and pain, I have to have regular routines, it’s difficult to deal with lots of different things, I have to limit what I do, housework is hard to keep up with, cooking a meal is sometimes exhausting.

You lose so much, relationships with partners, family and friends are affected. You are not able to be the person you once were. All your strength is being used to get through the day, there’s nothing left for anything or anyone else afterwards. You feel like you let people down. I had to give up the things I enjoy, dance classes, walking, travelling, cycling, I have to conserve all my energy for work and finances are reduced.

You end up worrying about the future and feel your life is worthless which leads to anxiety and periods depression. I hate to be negative but this is the reality of how it is. I know because this is how I felt and on occasions still do, however there is hope and ways of managing life with Fibromyalgia that makes you feel happier and boosts your self confidence again. It means changing how you think and feel about yourself which is a tough journey but worth taking the time and effort to make.

Thank you for reading this if you made it to the end your support for those coping with an invisible illness is greatly appreciated.

National Fibromyalgia Awareness Week 3-10 September

There are an estimated 250,000 people in the UK with Fibromyalgia yet it can take months/years to diagnose as there are no specific tests or investigations that detect it. It’s a long process of elimination.

Even most GP’s have limited knowledge and awareness of the condition. You are usually referred to a Rheumatologist who should take a detailed and comprehensive account of your past and present medical/personal history. It’s best to be open and honest as anything can be significant.

An examination involves applying pressure to 18-21 specific “tender” or “trigger” points over the body which Fibromyalgia patients react to as extreme pain.

There is no cure so you are prescribed antidepressants and/or anticonvulsants to relieve pain and sleep deprivation, however this can start a cycle of relying solely on medication which has side effects.

By attending a Specialist Unit at Guys, Kings or UCLH you will be given the best advice on how to manage the symptoms holistically. Unfortunately due to lack of awareness you will have to be persistent in requesting your GP to refer you to these services and there is a long waiting list.

National Fibromyalgia Awareness Week 3-10 September

Group member Alison Temple writes about her experience:

Although there is no established cause, the most recognised reason for all the symptoms of Fibromyagia is deregulation or ” mis-firing” of neurotransmitters in the brain. This can happen if you have had an accident/injury or extreme movement involving the head and/or experienced deep emotional trauma.

Prior to symptoms I was helping mum care for dad, who had dementia and lung cancer, when he was in hospital and at home for nine months. During this time I also had a lot of stress at work.

After we lost Dad and during the first few months of grieving, my mum had an accident and had problems coming out of anaesthetic after the op. She was left with a disability of her right arm.

On the evening I picked her up from hospital a transit van decided to hit me on the drivers side, which violently spun the car around. I had whiplash and backache for a few months but thought nothing of it.

Although I didn’t realise it as Fibromyalgia at the time, the symptoms started a month later.

I hope my experience raises awareness for you and for others. So please look after each other and don’t be too quick to make assumptions or excuses if someone seems to be struggling.

I appreciate you taking time to read this for Fibromyalgia Awareness Week x x x x x x

9th August 2017 – Official HMRC Recognition For Our Group

Fantastic news!!! After two attempts our group has been fully recognised by the HMRC allowing us to claim Gift Aid on donations. We have built a full constitution which the HMRC accepted after some changes from the first draft which had been rejected. It means that not only is the group run lawfully and fairly but also shows larger companies who may wish to donate that we are a well-run and a forward thinking group. We have learned from history that we do not wish to just remain a small Facebook page group but one that reaches out into the community to try to help others far more than ever before. A HUGE thank you to Nicky from the entire group for her amazing help in sorting out the second draft. Had it not been for her hard work we may still be on the fiftieth draft!

25th July 2017 – NKMEFF Hit the Beach

The annual group day trip was a fantastic day at Minnis Bay that started with the clouds looking threatening but within an hour the sun was out and we were lounging on the beach. All was going well until all the beaches were under water and the sea brought with it half the globes sea weed! But we camped on the promenade and enjoyed many laughs and coffees. Keep thinking about where you would like the group trip to be next year. It will come round fast I bet!