I cannot believe it’s March already. Longer nights. Warmer days. I can’t wait. It always feels good to me when it feels like we can leave the dark winter days behind. My Fibro is always a bit happier, too.
Firstly, I would like that thank all of you who took a moment to look over the new website. And thanks for all the supportive comments, as well. It is still growing and we hope for it to become a substantial resource for everyone.
Secondly – Dr Gary Lee will be coming to speak to us in March! The projector has been dusted off and Karen is ironing the screen as I type. It’s always a pleasure to have Gary visit us, and this is no exception. Since launching The Future Clinic, Gary has been rushed off his feet, so we’re very grateful to him for making time for us. Let’s all be there to welcome him.
Now, I have an important announcement:
Subs and fees
Until now, we have always paid an annual membership fee of £6.00 and a monthly subscription of £3.00. This has always meant two lots of monies to be found by you, paid, collected and accounted for. And with members joining at different times of the year, our Treasurer, Gill, can have a bit of a task on her hands keeping track of everything.
We need this to be easier and fairer. So, from the 1st of March 2019 the annual fee will be divided up and integrated into the monthly charge, giving a monthly subscription of £3.50. By re-structuring it like this, we can avoid increasing it overall. You’re not paying any extra, and I hope, for some of you, it makes life a bit easier.
Why do this Now?
Our charges are the same as they were in 2014, which is the last time we had any actual increases. Unfortunately, we can’t say the same for anything else. Essentials like tea, coffee and biscuits have all gone up over the last five years.
And in January, the cost of the Church Hall went up too by 16%. So to help us manage these monthly costs it makes sense for us to make the most of our monthly income.
What about Carers and Assistants?
I mentioned making things fairer, and that’s why the £3.50 charge will be payable by all attendees to meetings, including carers and assistants. These valuable supporters have always been welcome and never excluded from the group’s activities, refreshments, talks and so forth. So, if you are a carer, I hope you will understand that we rely on everybody’s financial contribution to help keep the Wight Fibro Group going. Your help and support is just as important to us as everybody else’s, and we’re glad to have you on board.
The tragic cost of a PIP decision
“If they hadn’t cut her PIP, my daughter would still be here.”
The mother of a woman who died after her PIP was stopped has successfully sued Capita, the government-appointed body responsible for the decision.
Victoria Smith passed away last July of a brain haemorrhage, just weeks after being told she was not eligible for Personal Independence Payments (PIP). She was 33.
Although Ms Smith died of a brain haemorrhage, doctors told the family her underlying conditions, particularly the fibromyalgia, had deteriorated as well. The week after she died, a tribunal decided she was eligible for PIP.
Furious with the conclusions the Capita employee had reached, Mrs Kemlo took legal action against the company for maladministration; in essence making inaccurate statements.
The family has now been awarded £10,000 in damages.
This is a terrible case and highlights the struggle we face on a daily basis simply to get the most basic help. My thanks go to Yvonne Yelland for passing this story on to us. You can read the full BBC article using the link at the end of this newsletter.
But things could change…
As doctors start to realize fibro is a real condition like patients have been saying all along, finding a definitive diagnostic test is top of mind. But because we still don’t know what causes fibromyalgia, it’s much harder to develop tests, effective treatments or even a cure because we still don’t know what cause to target. However, experts believe in the next five to 10 years, a definitive yes-no test for fibro will be available.
Two blood tests — FM/a and IsolateFibromyalgia — think they may already have the answer.
At present these tests are only available in America, and, as long as our health department is run by the Posh Boys, we’re unlikely to see in on the NHS anytime soon. But it could be available privately in the UK someday, and wouldn’t that be a good thing, at least? Many of us have a hell of a time trying to get a diagnosis, and this is especially true for men with the condition. An accurate, reliable and repeatable test which give a firm yes/no result would be a life-changing breakthrough for thousands of us.
And it might mean no more tragic cases like Victoria Smith.
Read more using the link at the end.
Our next meeting will be on the 12th of March. All Saints Church Hall, 1:30 onwards, as always.
See you there!