Fibromyalgia Association UK

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)

47 Replies

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  • how go u sign up

  • 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

  • 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

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

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

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

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

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

  • 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

  • they still need around 800 people x

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

  • 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

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

  • hi, its easier online, here the address.

    dtrsurvey.co.uk/fibrogene

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

  • 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

  • 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!

  • 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?

  • 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

  • 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.

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

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

  • WELL DONE, THANK YOU X

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

  • Hi Mo, heres the details.

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

    x

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

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

  • 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

  • Very savy, thank you for supporting it xx

  • 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

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

  • 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

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

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

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

  • Brilliant xx

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

  • 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.

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

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

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

  • I just registered on line.

  • just applied .Will do anything to help with fibro

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

  • 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...

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

  • 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

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