Sheffield Hallam University is conducting a study about the experiences of living with and being treated for fibromyalgia. The study involves completing a survey in which participants will be asked questions about their wellbeing, how symptoms impact on everyday life and treatments they have tried.
The survey, which is a part of a research study, has been generously funded by Folly Pogs Fibromyalgia Research project.
The survey is anonymous, no personal details are requested, takes about 30 minutes and you can save your answers and come back to it later as many times as you need.
This survey will help inform the team of researchers about future possible treatments for fibromyalgia – we hope that you will spare some time to help the cause. The survey is only for people who are 18 and over and who have an official diagnosis of fibromyalgia.
Please make sure to complete the survey to the very end – if the last question won’t be answered and the survey won’t be submitted, it won’t be received by the researchers. The survey will be active until March 2016.
The Link to the Survey:
Deepak told us: ‘’I am climbing Britain’s highest mountain, Ben Nevis on 12th August 2016 to help a close friend, Donna, who suffers from fibromyalgia. I want to raise awareness and collect as much money I can for FMA UK.
Like many people, I had never heard of Fibromyalgia until I met Donna.
When I became aware of what Donna had gone through, prior and during her diagnosis, and how it affects her in everyday life, I became interested in learning about the condition and spreading information to others.
I’ve set a target of £500 to raise for FMA UK, but I hope to raise a lot more’’.
To support Deepak’s efforts you can donate through his JustGiving page:
We have received the following request from The Benefits and Work website. They are asking for information if you have had any experience of ATOS PIP assessment centres. Please let them know by going to their website
Have you been to an Atos PIP assessment centre?
Category: Latest news
Created: Tuesday, 12 January 2016 13:28
PIP claimants are being forced to travel long distances to unfamiliar places in order to have a face-to-face medical assessment, due to a shortage of assessors and assessment centres and a computerised booking system which ignores claimants needs.
We’re asking Benefits and Work readers to help out by telling us about the PIP assessment centre you attended if you have already had a medical. That way new claimants can be better prepared for attending their medical, if they are unable to get it changed to somewhere they know.
Thank you to Jemella Gosling for sharing this poem which is part of her Flutterby Series.
by Jemella Gosling as part of the Flutterby Series
Through my open window,
I smell the world outside.
And I listen to it sounds,
Duly passing by.
Outside my bedroom window,
Lives a wondrous place for me.
I imagine all it wonders,
A magical place to be.
The DWP has today launched a consultation aimed at slashing the number of people eligible for the daily living component of personal independence payment (PIP) by up to 35%. The cuts will be aimed at claimants who qualify for PIP because of their use of aids and appliances and may include replacing awards with discretionary voucher payments.
The press release and consultation document published today claim that 35% of all daily living allowance awards are based solely on the claimant’s need to use aids and appliances.
In addition, the DWP points out that recent upper tribunal decisions have found that a bed, for example, can count as an aid or appliance if a claimant needs to sit on it in order to get dressed.
The DWP argues that the use of readily available or low cost items as aids or appliances isn’t a reliable guide as to whether a person has to meet additional costs because of their disability. As a result the department has launched a brief consultation, ending on 29 January 2016, to decide whether and how to change the system.
MAC are looking for participants for a research study into a potential new drug for pain associated with fibromyalgia. A summary of the study is below, including a link to the full details. If you are interested in taking part please contact MAC directly. Spaces are filling fast and a speedy response is recommended.
MAC Clinical Research are undertaking a 22 week study for people with pain associated with fibromyalgia. The study is being conducted at 300 centres worldwide (including the 4 MAC sites in Manchester,Blackpool, Leeds and Cannock).1200 people will be enrolled (600 already enrolled). The study is testing the safety, efficacy and tolerability of a new compound and patients who take part will be randomised into one of four possible groups:
- 15mg study drug
- 30mg study drug
- 300mg pregabalin ( we wont know who is taking which )
Charlotte Snares has embarked on a number of difficult challenges for FMA UK. The first one was a ‘’rainbow hair’’ challenge when she has coloured her hair in many rainbow colours, as seen on the picture. Fundraising is tough but she doesn’t give up. She told us: ‘’Fundraising has been quite challenging. People sadly have not been that forthcoming with donations. I think the problem is that there is still a major lack of awareness about Fibromyalgia.
I am not giving up though. I am working on a new challenge for the new year. I am aiming to do a two hour gym session on the 27th of February 201: an hour on the cross trainer and an hour on the bike. This for me is a major challenge with both M.E and Fibromyalgia and a slipped disc in my back. I struggle on a daily basis to get about and sometimes even breathing hurts.
I am raising funds as I was diagnosed with M.E several years ago and have been recently diagnosed with Fibromyalgia...although I think I have suffered a lot longer. I have had the symptoms since I was about 11 (now 35) but have struggled with getting diagnosed and supported. I decided to fund raise as I wanted to do something positive and channel some of how I have been feeling into creative projects as a part of healing for me and also helping to raise awareness and funds to help others who are struggling. I will also be offering reiki treatments to raise funds. I will be fundraising for as long as possible’’.
Support Charlotte’s fundraising efforts by donating to her JustGiving page: