kings

[rosylyn]

The Kings Fibro Genetics study needs your support

FibroAction have been asked to help publicise a hugely important study into the genetics of Fibro -info below. Please support this research!

INFORMATION FROM THE RESEARCH TEAM

Could your DNA provide a clue to the reason for fibromyalgia? Be part of the largest genetic study ever conducted into fibromyalgia...

Are you fed up with poor treatment of chronic pain? We will be able to devise better therapies only with improved understanding of the biology of pain.

We are exploring the genetics of chronic pain by:-

• collecting 2000 samples of DNA from people with fibromyalgia/chronic widespread pain

Volunteers urgently needed!

We will ask you simply to

• fill in a pain questionnaire about you and your symptoms

• donate a blood sample at your surgery (we will send the blood taking kit)

We aim to publish the results and will post a summary of the research on the FibroAction website. If you provide an email we can provide feedback from your questionnaire.

Get in touch (0207 188 1928) and we will send you the details or click on the following link dtrsurvey.co.uk/fibrogene

Thank you very much for your help.

Dr Frances Williams,

Senior Lecturer and Hon Consultant Rheumatologist

Dept Twin Research,

King’s College London

St Thomas’ Hospital

London SE1 7EH

[fairytails]

i did mine b4 xmas do they let us know any outcome ? xx

[Hidden]

Hello there Rosylyn, thank you for your message.

We discussed this late last year, if you click on the link below it will take you to our discussion, I hope you find it informative -

fibroaction.healthunlocked....

Thank you for bringing this important study to our attention again.

(((hug))) xxx

Libs

[Saskia]

Hi roslyn,

I tried to register for this study last year but was stumped when it asked for metric height and weight so gave up! I went to bed as it was late. I asked my clever OH to work it out for me, which he did, but then I never got round to completing the reg. form. In the end I felt sure that there would be enough volunteers.

I am happy to volunteer but ....my problem now is that I have mislaid ( or lost! lol) the figures which my Oh had scribbled on a bit of paper for me. I live in a complete muddle I am afraid and my concentration and memory are shot to pieces.

I'll endeavour to find the figures or, failing that, ask OH to work it out again for me and when I can concentrate a bit better (today is not a very good day...I am having trouble even typing this) I'll attempt to register again.

Take care, Love and hugs. Saskia XX

[rosylyn]

hi hun i went and got a converter from feet to metric .then done stones to kg. be good to do it if you can get some energy.

gentle hugs lyn xxxx

[Saskia]

Hi Lyn,

I'll do my best as it sounds like a very worthwhile study and I like to help in whatever way I can. I am not much practical use to people any more so I try to do what I can by way of trying to give emotional support on this and other websites when I have the energy, listen to friends' problems, if I can, and sign campaigns on FB etc. However feeble we end up, we can all do something small to help make the world a better place. I am a great animal lover, too, and I love to feed the garden birds and it gives me great pleasure to watch them. I also have 2 cats and 2 rescue dogs who I adore. Together with my husband, they give me a reason to live and to keep struggling on ...in a muddly sort of way!

I'll keep in touch and let you know when I've registered.

Have a good evening and a good weekend.

Love and hugs Saskia XX

[phlebo123]

I completed my registration before xmas and the blood samples were posted. If anyone is thinking of taking part it was all very straightforward and I just got the blood samples taken at the same time as I was getting other samples taken. Let's hope their research is useful!!

[charlii]

I would love to do this, have never heard of it before but count me in! Please tell me what to do next...Charlii x

[rosylyn in reply to charlii]

Get in touch (0207 188 1928) and we will send you the details or click on the following link dtrsurvey.co.uk/fibrogene

just follow the link hun.xxx

[Hidden]

Thank you i've just done it thanks to your link xx

[Hidden]

Hi Lyn

Thanks for reporting about this. I registered before Christmas, and got the kit. But hadn't actually done it, as getting the appt was too difficult. So this was a good reminder, and yesterday I phoned my surgery and made the appointment for next week.

Kaz

xx

[SapphireStanton]

yes i too have done this and dont panic the gps apparently see these funny blue boxes all the time.

it also feels good to be part of the search for answers

[SilkyJ]

Is this something I can do too, as I also have hypothyroidism which won't respond to treatment. So, in theory, I have both Fibro and Hypthyroidism and symptoms do overlap. Although I do know exactly what the Fibro symptoms are so should be able to fill in those symptoms without confusing them with other Hypo symptoms.

Your thoughts would be appreciated.

Silky x

[Hidden in reply to SilkyJ]

I am sure you can enquire about this Silky if you are interested in taking part.

Here is the contact info -

Get in touch (0207 188 1928) and we will send you the details or click on the following link dtrsurvey.co.uk/fibrogene

[SilkyJ in reply to Hidden]

Thanks Libs... I will give them a call when I'm done with filling in my ESA form... someone from a support group is coming to help me with it. She volunteers and has done quite a few so hopefully she knows what she's doing as I certainly am struggling. x

[pensham]

I took part before xmas and had the blood samples taken at the same time as my annual blood check up. The pain questionnaire is very simple, one A4 piece of paper both sides. The instructions you get with the blood sample box are also very clear so all you have to do is turn up, hand the instructions over to nurse/doctor and give blood!

I really happy to be involved in something that might benefit myself and future sufferers.

[jiw8207]

Just filled in the questionairre on line. Great to be able to take part in something like this.

Julia x