Fibromyalgia Association UK - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibromyalgia Association UK

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12 years ago•47 Replies

CALLING PEOPLE WITH FIBROMYALGIA WE NEED YOUR HELP TO COMPLETE THE LARGEST GENETIC STUDY OF FIBROMYLAGIA EVER!

The study can be completed at your local GP practice!

We need to reach our target of 2000 people taking part in this study and we are 60% of the way there! With YOUR help we will have enough people in the study to allow scientists to tease apart the genetic factors contributing to the development of fibromyalgia.

We have spoken to many people with fibromyalgia and have heard their frustration at the poor treatment options available to those living with chronic pain. The team working on this study includes scientists and doctors convinced that we will be able to devise better therapies only with improved understanding of the biology of pain.

Thank you to the 1200 of you who have already enrolled in the fibromyalgia study – your support and effort is invaluable. If you have already received a blood donation kit we should be grateful if you would kindly arrange this by the end of April 2013. If you have received a blood donation kit but are unable to take part in the study, please return the kit to FREEPOST address: Admin Team, Department of Twin Research, St Thomas’ Hospital, FREEPOST LON7776, London, SE1 7YY (no stamp required)

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Fibromyalgia

47 Replies

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linlit12 years ago

how go u sign up

• in reply tolinlit12 years ago

Ive found this

If you have fibromyalgia and would like more information about the study, please call us on 0207 188 1928. On registration you will be sent a questionnaire, a blood donation kit and instructions. Or you can register on line at dtrsurvey.co.uk/fibrogene

SilkyJ• in reply to12 years ago

When I called to enquire more about the study, the lady didn't seem to know much. Is there anything anywhere where I can see what it really is about?

Thanks so my, Eversohappy (love your name )

Silky x

charlii12 years ago

i would be really happy to do this! What do i need to do first?

• in reply tocharlii12 years ago

Hi go on Fibromyalgia Association UK. I signed up a few weeks ago i go for the blood tests next week.

12 years ago

Hi go on Fibromyalgia Association UK. I signed up a few weeks ago i go for the blood tests next week.

12 years ago

There was a link when i did it, ive just had a look but cant see any phone number?

charlii12 years ago

ok, thanks, i will investigate further...would really like to help.

12 years ago

Ive found this

12 years ago

they still need around 800 people x

charlii12 years ago

799 people now! Will ring in the morning...thank you.

12 years ago

No probs, thanks for joining. If we can get any more answers or help to this fibro curse this is our way of contributing

Thank you xx

maribra212 years ago

i will ring in the morning,i would be very happy to join,thank u

• in reply tomaribra212 years ago

hi, its easier online, here the address.

dtrsurvey.co.uk/fibrogene

maribra212 years ago

thank u for the link,i already done it was so easy

NuttyNanna• in reply tomaribra212 years ago

Was your doc ok to do the blood test for you? Our surgery doesnt do bloods so I will have to go to my local hospital and so I feel a bit embarrassed

LindseyMid12 years ago

There is some info here:

fibroaction.org/News/The-Ki...

It's worth pointing out that this study is being run by researchers at Kings College London and is NOT being run by fmauk (or FibroAction).

Do please support it though!

• in reply toLindseyMid12 years ago

I think anything to do with Fibromyalgia is worth supporting, regardless of who its run by. I just hope as many people who suffer can donate a little time to (any) study if its going to get the answers they need to fibromyalgia. I dont understand y its worth pointing it out? who Its not run by?

• in reply to12 years ago

It was advertised on FMUK

Dr Frances Williams,

Senior Lecturer and Hon Consultant Rheumatologist

Dept Twin Research,

King’s College London

St Thomas’ Hospital

London SE1 7EH

LindseyMid• in reply to12 years ago

Because I know we have had people contacting us (FibroAction) directly wanting to join whenever we have publicised trials, and I'm sure that is true of the other organisations publicising this study. If someone wishes to join, they must contact the research team at Kings.

• in reply toLindseyMid12 years ago

Ok that makes scense, I thought id done something wrong putting it on. Sorry lol

Gerry12 years ago

Had the bloods taken about 8 weeks ago and send them back its a simple task.

• in reply toGerry12 years ago

WELL DONE, THANK YOU X

mooo196712 years ago

I would be happy to be included in this study x how do I go about joining?

• in reply tomooo196712 years ago

Hi Mo, heres the details.

you can register on line at dtrsurvey.co.uk/fibrogene

tracey67612 years ago

hi...have just done it on line, easy as well worth to find out well basically anything that'll help or explain

• in reply totracey67612 years ago

Totally agree, i was so glad i came across it. Thank you for supporting it xx

sue3212 years ago

Yes, I did it about 3 weeks ago, dead simple, but be aware, some GP's won't do it, mine wouldn't, cos it wasn't requested by them. I did it myself, it's OK, I'm a retired nurse, and sent it off no probs. It's great cos you just have to drop it in the letter box!! XX

• in reply tosue3212 years ago

Very savy, thank you for supporting it xx

SilkyJ12 years ago

I called and they took all my details promising me the blood kit... that was two months ago and I still haven't received it!? I'm so ill that it just seems to much to reapply.

Silky x

• in reply toSilkyJ12 years ago

Oh thats a shame, Could you do it online maybe? xx

SilkyJ• in reply to12 years ago

I think I will give it a miss as I have so much on my plate and I can't deal with filling in more forms at the moment. I have also just finished my ESA50 and am shattered.

I have also submitted a complaint against my Practice to the Ombudsman so I am still in the middle of that and it's SO draining.

The lady I spoke with did promise me that it would take a couple of day to a week at most for the kit to get to me. I spent a good half hour on the phone to her too.

I may try at a later date if they are still in need of volunteers.

Silky x

Jolie• in reply toSilkyJ12 years ago

Same here never had a answer back 'filled in online form .Very rude to treat people who are very poorly ?Applied twice now ?

SilkyJ• in reply toJolie12 years ago

Jolie, I'm so glad I'm not the only one. x

Fibrofoggiest12 years ago

I've completed the online survey now, so await whatever. foggy

• in reply toFibrofoggiest12 years ago

Brilliant xx

Jolie• in reply toFibrofoggiest12 years ago

I have completed the online form twice now and have never heard anything back 'not even a reply ? Done it in january .

Daphne12 years ago

Posted off my blood sample yesterday morning . The practice nurse at my local surgery happy to help but when I asked about it being done a week or so ago at the reception desk , it had to be OK'd by the practice manager first because the blood test was not initiated by them . I did think , at one point , they would say no but all was well and it went ahead. I asked the practice nurse if they did a lot of this sort of thing and she said no but when they did , it could be a problem if any of the blood sample tubes broke. The ones they had at the surgery were not compatible.We also had a bit of a job sealing up the plastic box for posting. A bit of brute force was required to close it.

• in reply toDaphne12 years ago

Thats good to know, if anyone else has a problem or are refused. Thanks for the info xx

jayjayboy12 years ago

ive got my kit,appointment made at nurse to have blood taken next week

• in reply tojayjayboy12 years ago

Thanks tahts great, im so please so many people have been quick to get involved xx

Izzy5112 years ago

I just registered on line.

mub4012 years ago

just applied .Will do anything to help with fibro

Jolie12 years ago

I have applied twice now and never heard anything back 'very strange ?

12 years ago

I wonder y a few ppl are havin probs, i applied on line and got my box within 10 days?... And they are still advertising saying they had 1200 ppl out of the 2000 needed?, Well you cant do anymore lv, its great youve tried. Unless they havent updated the site. They may have enough now. But you would think they would update asap : / it is strange...

jane136812 years ago

Have just filled in online form. I just hope my gp will agree to do blood test!

• in reply tojane136812 years ago

Unfortunately some do get a bit funny about it, but what i would say is "is it not better to give a 5 min nurses apt, find cures and answers for conditions, rather than having to keep treating people for illnesses longterm. Which in effect would take up more surgery time in the long run!! Lol but thats just me, I have answer for most things...Especially when its a negative reason!! Good luck hope you get your pack through, Some ppl have been having problems getting their blood boxes through. X